JayCS’s Fibro Blog

2024-06-14 Friday

Summary:

  • LDN May 20th- 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 10% (:x:), energy profile “very slow” :x::x:, TT imp. :x:, jackknives :white_check_mark:, walking / cycling 15’ (:x:).
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:. 0 bites :white_check_mark:. 100g baked beans ➔ 1h sinuses (:white_check_mark:). Weight 74.4kg :x:. Balance (:x:).
  • Last focal seizure: Jun 5th (9d), 10d since then: :white_check_mark:.
  • Sleep: 22:40 bed before daylight’s left. Screen curfew 19:00? :white_check_mark:, not that late bed cos of: guinea pigs :white_check_mark:. QCS at 9:00 :white_check_mark:. Airing: 5.5h :white_check_mark:.
  • Thoughts:
    • If my Devil’s paintbrushes bloomed, that’d be of the big ones & Pics of the year! Pics of the week or even month might further expand happiness, instead of forgetting good moments.
    • The normal, not-Starsky, woodlouse scandal reminds me that we should always look at the most probably sorts first, and that a web search by description can be good, but also misleading, if we don’t follow up. That’s a life principle for any researching and thinking.
    • I spose learning names of things in my new area / home = garden, is a bit like a baby or pupil. Not essential, but apart from intensifying mindfulness and happiness by watching for details, it is good to know and helps me feel at home, secure, self-confident, competent.
  • Feelings: -
  • Cheer: Beautiful bird scene with 4! young blackbirds, 3 bathing at the same time, 1 flurrying, then 1 robin too. “BlackBlueTit” back, altogether 3. Taped dawn chorus and altogether 2x2h with phone on my street/bedroom window sill, luckily protected cos I didn’t think that it might rain.

Pic(k)s of the Day

= expanding happiness

Coming up is as Plant: oxeye/suneye. Birds: Swift groups and blackbird feeding. Insects: White-tailed bumblebee, woodlice and a baby cross orbweaver (spider)

Oxeyes or German “suneyes”, they’re pretty, and good for 52 wild bee types, altho they don’t belong here (N.Am.). I had 120 blossoms of them last August, this year so far they look as if most’ve been eaten by the Spanish slugs. But that’s left more space for the native horse mint, good for 56 insects, which I like too and smells wonderful:

Bud up close: I do think “suneyes” is more fitting!:

VID_20240614_101651 0'52'' swift Mauersegler snip

Hard to catch a good pic of a group, these are 4 of the group of 6:

Hard to recognize, this is Blackie on the right feeding one of his 4 kids with a cherry the brownish thing in the middle of the pic:

Ready for the 2nd or 3rd try cos it keeps falling out of littl’uns beak, here Blackie has it in his beak. I think he was a bit impatient, cos normally I’ve seen them manage cherries themselves, unless this one was smaller:

*Haven’t caught a white-tailed bumblebee lately, and here also it was hard to get all bits on at the same time, but apart from them looking so cosy and furry, the orange is spectacular and I’ve only now noticed that the white tail has 3 black stripes and the black bit above has 2-3 white ones:

Now I’m into woodlice cos of that for me unusual “shiny woodlouse”, and sure enough, these aren’t shiny:

…but this one is, but much less yellow spots:
IMG_20240614_134443.jpg Mauerassel unter Wasserschale unter Oleander

I didn’t recognise this spider as being a small = baby normal garden spider. I’ve decided the German name “cross spider” is fitting, and all English alternatives aside from garden spider are wonderful: cross orbweaver, diadem spider, orangie (sometimes have an orange touch I think), cross spider, and crowned orb weaver. The jack(daw) I once cared for yonks ago loved them, which was ambivalent for me: made me lose all fear of them, whilst so admiring their look and feeling sorry for them turning into a quick meal:

LDN: May 20th- 3.5mg (Mar 21st-May 19th 3mg), click for effects/dosage...)

10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. :white_check_mark: (Slowly up from Oct 1st ~0.07mg.
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th :white_check_mark:.) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/4 (❌), music 15', 11:27 Trying to listen to complicated music, does interest me ➔ 80%/4 (slight nausea & strain) (❌), white lips 70-80% (❌), TT imp. ❌, moving ➔ 75%/4-5 (✅), balance (❌), body fog (❌), jackknives (✅), SO post exertional malaise (❌), "post postural ache", "PPA" 3-5 ❌, stiffness (❌), exhaustibility theoretically "70%" ✅ / actually 90% ❌ and sleep 8h55 ✅ (Airing: 5.5h ✅. vQvCS: 9:00 ✅, "PPA": 3 ✅). Energy profile: since Jun 10th "very slow", with "8h rest", 5h very slow, 3h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 8h55, all deep ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:40-8:00 5’5’10’5’, 0 deep doze. Sum: 1h20+8h-(x5’=)25’ = 9h20-25’ = 8h55.
22:40 bed before daylight’s left
0:10 1st GABA, airing, plugs, nostril slightly closed, throat dry.
1:45 5’ 2nd GABA, street lamp out, dry mouth & hands, airing, plugs now out.
4:07 10’ 3rd GABA, closing windows cos loud robins woke me, cos plugs out already. 4:12 taping dawn chorus with phone on window sill.
6:11 4th GABA, checking phone on nesting boxes, putting it back out.
-08:00 up. Another 2h of bird song on tape.

2) Watching TRIGGERS, esp. of exhaustibility. 11:27 74.4kg after meal, not good. Bites OK ✅. Histamine foods: 16:13 another 100g of baked beans again was praps too early, but a good test, resulted only in 1h of slightly burning sinuses, a warning to leave the last 100g for 36h (✅). 20g goat/cow cheese (✅). Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on. Click for latest (Jun 7th) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, coming up: (Jun 10th) public health officer. Then make another GP appt. and (Jun 26th) Cardio.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Watch GABA intake (compliance) better! Resumee Jun 2nd of Creatine monohydrate Apr 9th- 2x5g for more (slow) energy has had a small positive effect, but less than the LDN. Might be trying creatine malate next. Last seizure Jun 5th (2), 9 days since last. Last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2), May 2nd (1) 13th (1). Click for latest (May 13th) & next changes...

Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Jun 5th (2) May 27th (1) 21st (1) 13th (1) & 2nd (1). Apr 22nd (2) & 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st 2024. 2023: Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCKs May 7th. Oct 21st.)

Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Jun 5th (2) (9:54 rabbit holing, 17:52 beginning of TT, from less GABA). May 27th (1) 21st (1 after TT, forgot some GABA) & 13th (1: too little sleep) 2nd (1: after TT) Apr 22nd (2: after TT), 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. LDN May 20th 3.5mg (Mar 21st-May 19th). 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:

  • 9:47 forgot to look for the sun, but swifts reminded me.
  • 19:47 fake fever from taking celandines pots out of the pot area to give others more space, fluey sick.
  • 22:14 wife warns me that the Germany vs. Scotland soccer game might make passersby noisier, but as opposed to her I don’t let things like that worry me, airing with ear plugs was fine, only 2 disturbances, despite winning 5:1.
  • 4:07 & 6:11 I put phone outside a window that was hard to open & close to tape the dawn chorus, then laid down, but thought it wouldn’t be good to have to do the same again in 1-2h, so got up and put it outside my bedroom window behind the swift nesting boxes. That was a good idea for my sleep, but also cos it then rained (and later it poured).

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

b) Birds:
(Every day cheer, song/calls/seen, new order of frequency Jun 9th, with :heavy_plus_sign: = increase: Woodpigeons :white_check_mark: Blackbirds :white_check_mark: Robins :white_check_mark: Sparrows :white_check_mark: Blackcap :heavy_plus_sign: :white_check_mark: Great Woodpecker :heavy_plus_sign: :white_check_mark: Swifts 16x :heavy_plus_sign: :white_check_mark:, Magpies :white_check_mark: Jacks on the increase (from immigrated ones) :heavy_plus_sign: :white_check_mark:, Birds bathing 4x :white_check_mark:), Raven(s) :heavy_plus_sign: :white_check_mark:, and these all minimized :heavy_minus_sign, (maybe hatching): Great&BlueTits - now BlueTits are here more too, incl. the BlackBlue one :white_check_mark: Dunnocks 0, (Chaffinch nearby :white_check_mark:) (Chiffchaff here for once :white_check_mark:) Collared dove 0 (Nuthatches 0).
Latest / earliest robin song: …22:30/ 4:00…

(Regular cheer, song/calls/seen - all :heavy_minus_sign: = decrease: 0)

  • Beautiful bird scene: It’s 4 young blackbirds – 3 bathing at the same time in the 3 bird bath up front, a 4th had already done so and was flurrying dry on the pavillon, when a 2nd had finished bathing, after 1’ robin came and bathed, so again all baths full at the same time.
  • 4! Young blackbirds: 12:01 1 bathing when I came out of the cellar entrance 2x, someone in the cherry begging for food might be 1 too. 12:08 All flying to and fro nervously when Blackie calls out alarm. 12:18 Blackie(?) fed a begging littl’un with a cherry again and again, like a gob-stopper, instead of small bits. Probably not necessary any more, since they were all feeding themselves quite well since they appeared here. Not the filming noise, but pointing the camera at him, irritated, slow flew away, gotta be more careful. 12:25 with the gusts of wind there’s often a loud squeak from the trees. 14:21 Blackbird family – about 5 – in the cherry, with squeaks and squawks. 19:12 Blackie bathing too.
  • Swifts 10:16 close. Regularly for 5’ when I put the swift sounds on.
  • Blue Tits: 12:08 one in the feeding boxes is still severely discoloured, that’ll be one of this year’s babies come back (bred next door). It’s a lighter yellow but has black areas everywhere, face and body. Still Moving nimbly tho, so doesn’t seem sick. 12:46 Black-blue-tit pretty active. 13:21 again. 17:32 at least 2 BlueTits came along, I think not as discoloured as the BlackBlue one. 19:12 2 sitting on twigs of aqua-sandarium.
  • Sunflower seeds: mainly the woodpigeons, who it’s meant for.
  • House sparrow: 16:58 but too shy.
  • Chiffchaff 18:15 a rare visitor at the moment.
  • Wife shared: at 7:00 saw 3 of 4 blackbirds, 3 BlueTits on balcony, then 2 squirrels, 1 chasing magpie, 2 magpies chasing back on garden house next-door.
  • Robin: Girlie sat 30cm behind me on a branch, watching.
  • Latest/earliest: Very different tonight, 22:23: Neighbour’s blackbird (hasn’t been recently) and Blackie both more to the street, and a robin to the left and right, not sure if mine. 22:35 not dark yet, but loudest nearest birds almost stopped, only in background. The main blackbird motif here once, with no bed alarm – have bed alarms stopped? Maybe swift after 22:00.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel and a 2nd one my wife shared :white_check_mark:)
Bats: 22:35 pipistrel in the street, before 1 in the gardens. :white_check_mark: Bank voles 0. Insects: bees, bugs :white_check_mark:

e) Human life: (TT n/a. Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark: Music listening :white_check_mark: Nice talks :white_check_mark:)
f) Environment: (Outdoors :white_check_mark:.) Love it.
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)
Foggies: (Body (:x:). Brain (:x:).) Balance.

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-15 Saturday

Summary:

  • LDN May 20th- 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 10% :x::x:, energy profile “very slow” :x::x:, TT imp. :x:, jackknives: 16 (:white_check_mark:), walking / cycling 10’ :x:.
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:. 0 bites :white_check_mark:. Balance (:x:). 73.4 kg (:x:). 100g baked beans 30h after last :white_check_mark:.
  • Last focal seizure: Jun 5th (9d), now 10d…
  • Sleep: Screen curfew 7:00(?) :white_check_mark:, late bed cos of: guinea pigs? “:white_check_mark:”. QCS at 5:20 ➔ +2h deep sleep :white_check_mark:. Airing: 4h :white_check_mark:.
  • Thoughts about feelings: Usually can’t remember anything from the day before, often lots of wows, the pics aren’t just holding on to that fleeting moment, they are often much better, cos I can see and relish more: details, quick movements, constellation/context. Each time I look at them I can look at them a different way, like I do art, whilst if I looked at them straight without a camera, at most 1 way of is possible, usually not even that, cos of brain fog, eye issues, feeling overwhelmed, etc. When photos aren’t that wow, I make them wow for myself by deepening (reading up about the background / identification) and comparing. This’ll be the reason why I now very much look forward to doing the blog entries, however much others may or may not be getting out of them.
  • Feelings: Wife rightly laughed at me for worrying about scaring blackbird away by mistake.
  • Cheer: Cheer: Clouds! Pics: Really fun selecting, Saturday, and Sunday I’m looking forward to identifying today’s turquoise beetle.
    The woodpigeon loud now on an early morning recording Vocaroo | Online voice recorder

Pic(k)s of the Day

= expanding happiness

PicsWoodpigeon call, hemp, crack, rain, larva, guinea pigs, turquoise weevil, marmalade hoverfly, devil’s paintbrush buds coming up, 46x swift vid snapshots to flick thru, black woodlouse:

Listening thru a few hours of bird singing I at last found a better recording of the unusual / funny woodpigeon: Vocaroo | Online voice recorder

After the ‘bigger’ hemp plantation another crack in the grey sky,

The cracks is where the light comes in:

Rain which drove the swifts way (41 pics coming up last except a black pill-bug)

Gotta see how the larva is doing every day:

Here are both guinea pigs close, as often nowadays, the littler one with a bit of carrot I’d cut small for him:

This was the emerald of the day, turns out the green immigrant leaf weevil isn’t too good for fruit trees, but it’s only one, our cherry can take that and more! I love how he looks and moves:

(Took the walking pics out again, cos blurry, and post too long.)

A “devil’s paintbrush”, all 3 apps now confirm this is, and maybe this is already a bud of a blossom, aaaand I seem to have at least 6 of them, so am freeing them of grass and hoping and waiting for the burst of colour:

And these golden flies I always have to have a look at:

And I worked thru only a short swift video, and all these were invisible to me when I filmed and very difficult to find, so I gotta post all 46 to “flick thru”. Around #40-41 I’ve now at last proven that their wings can sometimes seem more frayed:


VID_20240615_081140 8'.mp4 1'45'' swift 3
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LDN: May 20th- 3.5mg (Mar 21st-May 19th 3mg), click for effects/dosage...)

10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. :white_check_mark: (Slowly up from Oct 1st ~0.07mg.
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th :white_check_mark:.) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/4 ❌, music 15' ➔ 80%/3 (strain) (❌), white lips 70-80% (❌), TT imp. ❌, moving ➔ 80%/4-5: fake fever ❌❌, balance (❌), body fog (❌), jackknives: 16x (✅), SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually 90% ❌ and sleep 7h50 ✅ (Airing: 4h ✅. vQvCS: 5:20 ✅, "PPA": 2 ✅). Energy profile: since Jun 10th "very slow", with "10h rest", 4h very slow, 2h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 7h50, -10' deep doze ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:05-7:30 4x5’+15’, -10’ deep doze. Sum: h55+7h30-(x5’=)35’ = 8h25-35’ = 7h50.
23:05 back exercises properly cos of slight clavicle pain
0:53 1st plugs in deeper, cos passersby had disturbed and kept me from deep sleep, maybe 30’ of deep dozing.
1:50 2nd
3:13 3rd praps more peeing cos of drinking more? Taping dawn chorus. Ear plugs out, windows closed.
4:59 4th 1h40 dawn chorus tape, ear plugs still out. Dreamt pharmacy being complicated – which reflects an unnecessary prescription problem the other day. Interesting I could sleep so long altho I thought I need a QCS.
5:01 1 A3 pill left, I think glutamine
5:22 don’t feel like sleeping, so QCS after all. Sunrise 5:05 woodpigeon and jacks? Singing this early.
5:35 fresh air good, reasons for waking up may be late sleep, not enough early sun, 100g histamine, screen curfew was early.
7:30 up after another 2h, good, starting with swifts again. Belly ache. Stools normal colour and firm.

2) Watching TRIGGERS, esp. of exhaustibility. 10:30 slight balance regularly, not much, so I can compensate, but fairly noticeable ❌. 10:54 after garden stuff pain up to 5, but still exhilarated from managing to do some new things ❌. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: Last 100g baked beans for last meal, 30h after the last ones ✅. 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on. Click for latest (Jun 7th) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, coming up: (Jun 10th) public health officer. Then make another GP appt. and (Jun 26th) Cardio.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

[details=“4) UNDER CONTROL :white_check_mark: (attention necessary (:white_check_mark:)): 73.4kg :x:. 9:13 3rd or 4th time I got 1 liquid stools after normal stools :x:. This time it can’t be egg being off.
11:43 Wind starting to make me feel sick, should’ve put a 2nd hoodie on :x:. Took evening supps a bit late. Realized last focal seizure is 10 days ago :white_check_mark:. 22:55 back exercises properly and hanging 15’’ cos of slight clavicle pain again :white_check_mark:. Watch GABA intake (compliance) better! Resumee Jun 2nd of Creatine monohydrate Apr 9th- 2x5g for more (slow) energy has had a small positive effect, but less than the LDN. Might be trying creatine malate next. Last seizure Jun 5th (2), 9 days since last. Last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2), May 2nd (1) 13th (1). Click for latest (May 13th) & next changes…”]
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Jun 5th (2) May 27th (1) 21st (1) 13th (1) & 2nd (1). Apr 22nd (2) & 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st 2024. 2023: Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCKs May 7th. Oct 21st.)

Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Jun 5th (2) (9:54 rabbit holing, 17:52 beginning of TT, from less GABA). May 27th (1) 21st (1 after TT, forgot some GABA) & 13th (1: too little sleep) 2nd (1: after TT) Apr 22nd (2: after TT), 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. LDN May 20th 3.5mg (Mar 21st-May 19th). 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

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No ‘research’ today

Quality of life: 90%

Lessons in self-care:

  • 10:40 Doing ‘so’ much in the garden & carrying rain water I’m getting the fake fever which again reminds me of how I used to push thru having the flu (before the swine fever 2011)
  • Felt sorry for scaring a blackbird away by throwing a stick by (but my wife laughed at my oversensitivity), and 2 insects were in the grass I put on a bucket outside for guinea pigs, so I do have to watch out, and the bucket may be a good idea for checking it.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
10:30 Exhilarating to go against my previous precepts of letting everything grow as it wants to, and now give other plants like dovesfoot cranesbill more room by removing lily-of-the-valley leaves (may bells) as well as old stems. Looked up that that won’t destroy those. Like early bloomers they’re sposed to be left on, but they’re almost useless for insects, only the flowers for 2 wild bee sorts. And the pretty orange berries I only had 3 of last winter, not worth it either.

b) Birds:
(Every day cheer, song/calls/seen, new order of frequency Jun 9th, with :heavy_plus_sign: = increase: Woodpigeons :white_check_mark: Blackbirds :white_check_mark: Robins :white_check_mark: Sparrows :white_check_mark: Blackcap :heavy_plus_sign: :white_check_mark: Great Woodpecker :heavy_plus_sign: :white_check_mark: Swifts 16x :heavy_plus_sign: :white_check_mark:, Magpies :white_check_mark: Jacks on the increase (from immigrated ones) :heavy_plus_sign: :white_check_mark:, Birds bathing 10x :white_check_mark:), Raven(s) :heavy_plus_sign: :white_check_mark:, and these all minimized :heavy_minus_sign, (maybe hatching): Great&BlueTits - back again :white_check_mark: Dunnocks (:white_check_mark:), (Chaffinch here :white_check_mark:) (Chiffchaff nearby :white_check_mark:) Collared dove 0, (Nuthatches 0).
Latest / earliest robin song: …22:35/ 4:00…

(Regular cheer, song/calls/seen - all :heavy_minus_sign: = decrease: 0)

  • Swifts 8;20 12 speeding over our street, even in light rain, near, pics? Away to a dryer place when it got harder
  • Woodpigeon nest: 11:11 feeding. Nestling squealing, begging, first time this year. 11:28 see parent and kid sitting next to each other for the first time without it being fed, cute.
  • Singing: 12:04 robin near. 16:22 Blackie venturing into neighbourhood territory again. Blackcap close. Started taping in the evening, cos not only blackbird singing at the same time as robin, but also blackcap a few times. Robins answering each other. Not sure which robin, but I’m beginning to feel I can recognise my robin, an arpeggio up and down.
  • Near: 16:07 BlueTit behind me in the ivy
  • Last robins 22:35, but 1 blackbird a little, praps Blackie, again I think without bedtime scolding, seems calmer atmosphere, cos no more nest.
  • 3:15 tape another dawn chorus to see when and how they actually start.
  • Sunrise 5:05 woodpigeon and jacks? Or sparrows? singing at 5:22, check tape.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats: pipistrel again :white_check_mark:. Bank voles :white_check_mark:. Insects: bees, bugs :white_check_mark:

  • 11:51 bank vole from under me.
  • Other guinea pig 13:10 made me laugh, cos I gave him some food, but he took a piece of straw instead, which is all around.
  • Insects: 16:07 Pretty turquoise beetle in suneye and hazel, thought I’d missed it while fetching my phone, but it appeared from under a leaf again. Thought I heard grasshoppers (“cicadas”), like a few weeks ago at TT, which is unlikely, cos they usually start in July, apart from the field-cricket from May on, which does occur in gardens, but has become very rare. For a tiny orange and tiny white insect at 18:24 I wasn’t quick enough with the phone, so I had to make do with a black fly I should identify “on the fly” by now.

e) Human life: (TT n/a. Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark: Music listening :white_check_mark: Nice talks :white_check_mark:)
f) Environment: (Outdoors :white_check_mark:.)

  • Rain: 10:30 full barrel after drizzle and cloudburst, but only 8 buckets empty. Still fun.
  • Clouds! Need to look at them more. Didn’t think to take a good pic of a nice formation, need to do that more.

g) Body: (“Theoretical” energy 30% (:white_check_mark:).)
Foggies: (Body (:x:). Brain (:x:).)
Simplified:

  • 8:21 realised 2h audios hardly use phone battery at all 10%, but 10’ videos 30%
  • 8:27 socks off before trousers off I usually do automatically if nec, usually n/a
  • 22:36 To get the guinea pigs in with less stress: Cut them off with not just my body, but a box they could flee into.
Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-16 Sunday

Summary:

  • LDN May 20th- 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 10% :x::x:, energy profile “very slow” :x::x:, TT imp., jackknives (:white_check_mark:), walking / cycling 5’ :x::x:.
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th :x: & Jun 10th :x::x::x: “?d”. 0 bites :white_check_mark:. 21:03 Trying to smell marmite, see if histamine reaction or not. Not the same of course.
  • Last focal seizure: Jun 5th (9d), now 12d :white_check_mark:
  • Sleep: Screen curfew 8:20 :white_check_mark:, late bed cos of: revenge bedtime procrastination “:x:”. QCS at 6:20 ➔ 2h deep sleep :white_check_mark:. Airing: 4h :white_check_mark:.
  • Thoughts: Whether tiniest or least liked, my love for all creatures comes from my faith, influence of Buddhist principles and respect for life like Albert Schweitzers.
  • Feelings: dissecting swift video felt over the top, but rewarding, just not something I can do every day.
  • Cheer: Confirmed 6x devil’s paintbrush! Robin girlie 6x and dunnock 1x near! Magpie pair! Young blackbirds!

Pic(k)s of the Day

= expanding happiness

Plants, guinea pigs, birds, snail, insects:

Plants:

Guinea pigs:

Birds:

Snail:

Insects: Ladybirds, flies, spiders:



Flies - couldn’t find out the names, except the last of course:




Spiders - found out all 3 names, roughly at least:


IMG_20240616_100959 Gewächshaus-Mondspinne common house spider Parasteatoda tepidariorum, syn. Achaearanea tepidariorum snip

LDN: May 20th- 3.5mg (Mar 21st-May 19th 3mg), click for effects/dosage...)

10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. :white_check_mark: (Slowly up from Oct 1st ~0.07mg.
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th :white_check_mark:.) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/4 ❌, music 20' ➔ 80%/3-4 (nausea, strain) (❌), white lips 70-80% (❌), TT imp. (❌), moving ➔ 80%/3-5 ❌❌, balance (❌), body fog (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (❌, slightly better), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually 90% ❌❌ and sleep 8h ✅ (Airing: 4h ✅. vQvCS: 6:00 ✅, "PPA": 2 ✅). Energy profile: since Jun 10th "very slow", with "10h rest", 4h very slow, 2h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 8h, all deep ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:45-8:20 4x5’+15, 0 deep doze. Sum: h15+8h20-(x5’=)35’ = 8h-35’ = 8h.
23:45’
1:16 1st
2:26 2nd
3:33 3rd (haha, 3 3 3 3), robins woke me up! So plugs in, windows closed
4:29 4th – street light is now on, when does it go on then, now?
6:09 5th, made mush, tried without QCS, but 6:10 belly ache OK again., 6:20 not sleeping deep, thinking of mails to write, so QCS
8:20 up

2) Watching TRIGGERS, esp. of exhaustibility. 21:03 Trying to just smell marmite, without tasting, see if histamine reaction or not. Not the same of course! Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on. Click for latest (Jun 7th) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, coming up: (Jun 10th) public health officer. Then make another GP appt. and (Jun 26th) Cardio.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): 7:50 belly ache from 5 on, praps cos of taking glutamine late. Stools normal tho. Watch GABA intake (compliance) better! Resumee Jun 2nd of Creatine monohydrate Apr 9th- 2x5g for more (slow) energy has had a small positive effect, but less than the LDN. Might be trying creatine malate next. Last seizure Jun 5th (2), 9 days since last. Last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2), May 2nd (1) 13th (1). Click for latest (May 13th) & next changes...

Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Jun 5th (2) May 27th (1) 21st (1) 13th (1) & 2nd (1). Apr 22nd (2) & 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st 2024. 2023: Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCKs May 7th. Oct 21st.)

Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Jun 5th (2) (9:54 rabbit holing, 17:52 beginning of TT, from less GABA). May 27th (1) 21st (1 after TT, forgot some GABA) & 13th (1: too little sleep) 2nd (1: after TT) Apr 22nd (2: after TT), 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. LDN May 20th 3.5mg (Mar 21st-May 19th). 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:

  • Took all day to do the blog entry, altho I’d finished the notes by 10:00, but the swift pics took ages, and I was so enjoying finding the hidden treasures. Screen curfew 20:20, guinea pigs on time 23:00, revenge bedtime procrastination, but got lots done that way.
  • Better not watch another swift video that closely, enough!
  • Phone tripod would help decrease strain

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
Looking forward to devil’s paintbrush and others. And: Yep, it’s devil’s paintbrush, both PlantNet app types identify it to a high degree, and also I have at least 6, now they just have to make it despite the shade 4 are in.

b) Birds:
(Every day cheer, song/calls/seen, new order of frequency Jun 9th, with :heavy_plus_sign: = increase: Woodpigeons :white_check_mark: Blackbirds :white_check_mark: Robins :white_check_mark: Sparrows :white_check_mark: Blackcap :heavy_plus_sign: :white_check_mark: Great Woodpecker :heavy_plus_sign: :white_check_mark: Swifts 16x :heavy_plus_sign: :white_check_mark:, Magpies :white_check_mark: Jacks on the increase (from immigrated ones) :heavy_plus_sign: :white_check_mark:, Birds bathing 6x :white_check_mark:), Raven(s) :heavy_plus_sign: :white_check_mark:, and these all minimized :heavy_minus_sign, (maybe hatching): Great&BlueTits :white_check_mark: Dunnocks :white_check_mark:, (Chaffinch back 17:07 :white_check_mark:) (Chiffchaff nearby :white_check_mark:) Collared dove: 17:38 3x call :white_check_mark:, (Nuthatches 0).
Latest / earliest robin song: …22:35/3:30!:white_check_mark:

(Regular cheer, song/calls/seen - all :heavy_minus_sign: = decrease: Wren)

  • Robin girlie visited me again for 10 seconds, but looking directly at me, cocking her head. Then 16:19 vid and pics, no problem 16:39 again and again 6x now!
  • 15:38 Magpie pair so cute on next door’s garden house, we watched together, one combing the other (like I know from jacks)
  • Swifts 7:30 taping swoops near when I put the sounds on.
  • Latest/earliest: Taping more cos curious when and it seems to be changing, and copying the tapes onto the laptop to listen thru better/quicker. My wife says she did hear blackbirds bedtime scold, but I think only short. Blackcap even singing late. Swifts still out at 22:30!
  • Several ravens making 3 different cawing sounds at the same time.
  • Woodpigeon nest: 12:39 again switch and begging. 16:03 nestling still looks furry rather than feathery, can see the tail while feeding. 16:17 Begging squeals are on the tape when I was wanting to tape blackbird 16:18 first time I’ve seen the face, eye with just pupil, no iris, of course, seemed broad baby beak (Monday that turned out wrong tho)
  • 13:00 The small light brown bird near like robin that flew away with another was likely a dunnock.
  • 17:07 Blackbird subsong, 17:38 Blackie singing loud and long
  • Young blackbirds: 20:56 3 on shed roof, watched from balcony.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank voles :white_check_mark:. Insects: bees, bugs :white_check_mark:

  • Insects: Started listing each insect in my notes, like with plants, birds and other animals. Now possible cos the laptop app isn’t bad for identifying.
  • Squirrels: redbrown 15:23 scarped past me on the balcony pipes. And 2 in the cornel cherry all morning again, sometimes making their laser sounds.
  • Discovering loads of insects now, woodlouse that was lighter coloured at the end, and a small thin long black fly on the lonicera that kept moving backwards.

e) Human life: (TT n/a. Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark: Music listening :white_check_mark: Nice talks :white_check_mark:)
Birding together from balcony after a very short cycle-walk

f) Environment: (Outdoors :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)
Foggies: (Body (:x:). Brain (:x:).)
Simplified:
Putting cut grass on a bucket, the insects can “get off” and I can take good pics of them on it.

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-17 Monday

Summary:

  • LDN May 20th- 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 10% :x:, energy profile “very slow” :x:, TT imp. :x:, jackknives :white_check_mark:, walking / cycling 5’ :x::
    Should I decrease LDN again, as recovery times were better then than now?
  • Triggers: Bit nauseous sometimes, like 13:43 after cutting grass and going upstairs. Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:. 0 bites :white_check_mark:.
  • Last focal seizure: Jun 5th (9d), 13d now :white_check_mark:.
  • Sleep: Screen curfew 20:00, but then 1h before bed, and 45’ at night :white_check_mark:/:x::x:, late bed cos of: procrastination “:x:”. QCS at 9:00 :white_check_mark: (but should have done it at night :x:). Airing: 4h :white_check_mark:. So no wonder I couldn’t sleep well - and airing isn’t a one-all help.
  • Thoughts: -
  • Feelings: -
  • Cheer: Swift swoops, new bird calls, tiny birds, saw nestling’s head properly, enjoying blackbirds all the time.

Pic(k)s of the Day

= expanding happiness

Coming up: “Performance art” by me, sunlight view, 4 blossoms, 2x birds, grasshopper, ladybird, mask spider, 3 snails.

And now for something completely different: performance art, by myself. This is some blueberry yogurt I threw at the inside of a fridge as a result of ‘body fog’. I glossed over my slight annoyance, laughed, made a pic, and decided how to clean it up quickest and most sustainably - with an old piece of cotton cloth(ing), which I put into one of the Tetra paks I use for many things now, mainly to throw them away in small quick containers (My wife said good she wasn’t there):

My wife asked me to capture this when we were sitting in the veranda:

New blossoms:
St. John’s wort suddenly blossoming all at once:


Small flowered willowherb more blossoms than ever up to now:

First suneye oxeye blossom:

Nipplewort blossoms:

*Birds:
2 young Blackbirds bathing:


Swift, only 1, the nearest, from now on only more special ones:
VID_20240617_082539 7'23'' swift close

New insects:
Male speckled bush-cricket / climbing locust on a poppy petal:


Asian ladybird with less spots, as often ‘untidier’:

…and from the side, with same coloured ‘shirt’ seeming to stick out, I can’t find what that is, abdomen? wings?:

This orb-weaver spider, zilla diodia, is called mask spider in German, fittingly:
![IMG_20240617_115556 Maskenspinne (mask spider) Zilla diodia (Fam Echten Radnetzspinnen orb-weaver spider) smaller|690x388]
Ant re-created sand-piles away from cellar steps after heavy rain, but further rain again uncovered their tunnels:

New snails:
More dark than light brown-rimmed banded snail:


Cute tiny snail:

(upload://zCIiDtLzinjZtkMgdzEcOhk4e7L.jpeg)
Flesh-coloured snail on Scotch broom:

LDN: May 20th- 3.5mg (Mar 21st-May 19th 3mg), click for effects/dosage...)

10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. :white_check_mark: (Slowly up from Oct 1st ~0.07mg.
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th :white_check_mark:.) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 5' ➔ 80%/4-5 ❌, music 20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT imp. ❌, moving ➔ 80%/4-5 - 13:43 nauseous after cutting grass and going upstairs (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), "post postural ache", "PPA" (❌), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually 90% ❌❌ and sleep 6h40 ✅ (Airing: 4h ✅. vQvCS: morning (❌), "PPA": 2 ✅). Energy profile: since Jun 10th "very slow", with "10h rest", 4h very slow, 2h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 6h40, all deep ✅, QCS morning, QCS = very quick very cold shower (22 issues under control).

Sleep 23:35-7:20 45+4+4+7+5’, 0 deep doze. Sum: h25+7h20-(x5’=)65’ = 7h45-65’ = 6h40.
Curfew 20:00, 22:40-23:40 blog, 0:16-1:04, so no wonder I couldn’t sleep.
23:35- so late again
0:16 back’s not good, so q6 and hanging till 1:04
2:11 2nd street light is off
3:33 3rd light still off, closed 2 windows, plugs in
5:01 7’ 4th 2 mush, closed 3rd window cos of light.
7:02 5th
7:20 bit early, try to pull sleep forward now, cos long sleep the past days.

2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on. Click for latest (Jun 7th) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, coming up: (Jun 10th) public health officer. Then make another GP appt. and (Jun 26th) Cardio.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): 11:58 should I decrease LDN again, as recovery times were better then than now? Watch GABA intake (compliance) better! Resumee Jun 2nd of Creatine monohydrate Apr 9th- 2x5g for more (slow) energy has had a small positive effect, but less than the LDN. Might be trying creatine malate next. Last seizure Jun 5th (2), 9 days since last. Last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2), May 2nd (1) 13th (1). Click for latest (May 13th) & next changes...

Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Jun 5th (2) May 27th (1) 21st (1) 13th (1) & 2nd (1). Apr 22nd (2) & 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st 2024. 2023: Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCKs May 7th. Oct 21st.)

Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Jun 5th (2) (9:54 rabbit holing, 17:52 beginning of TT, from less GABA). May 27th (1) 21st (1 after TT, forgot some GABA) & 13th (1: too little sleep) 2nd (1: after TT) Apr 22nd (2: after TT), 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. LDN May 20th 3.5mg (Mar 21st-May 19th). 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:
I try to stop guinea pig from getting depressed when one morsel falls out of his mouth several times by immediately picking it up, or if he knows it was ‘a bad piece’ cutting it smaller or giving a new morsel as stick with a pointed end, so small enough. But that puts me under pressure and makes me sad too, gotta watch out for that more again.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
The Japanese creeper (as more telling name than Boston ivy) now has a lighter green area, with quite a bit of red tinge, additionally to the first, which is a darker green one.
b) Birds:
(Every day cheer, song/calls/seen, new order of frequency Jun 9th, with :heavy_plus_sign: = increase: Woodpigeons :white_check_mark: Blackbirds :white_check_mark: Robins :white_check_mark: Sparrows :white_check_mark: Blackcap :heavy_plus_sign: :white_check_mark: Great Woodpecker 0! :heavy_minus_sign:, Swifts 24x :heavy_plus_sign: :white_check_mark:, Magpies (pair) :white_check_mark: Jacks stable, not increasing more atm (from immigrated ones) :heavy_plus_sign: :white_check_mark:, Birds bathing 8x :white_check_mark:), Raven(s) :heavy_plus_sign: :white_check_mark:, and these all minimized :heavy_minus_sign:, (maybe hatching): Great&BlueTits - regularly more, not as much as whilst and after hatching tho :white_check_mark: Dunnocks 0, (Chaffinch :white_check_mark: - 1-2x/d) (Chiffchaff 0) Collared dove :white_check_mark:, (Nuthatches 0).
Latest / earliest robin song: …22:30/ 4:00…
- Yesterday night 3:30, tonight nothing, much later.
(Regular cheer, song/calls/seen - all :heavy_minus_sign: = decrease: Wren, I think.)
Swifts 8:36 Again loads of really really near swoops, as if targeting my window. Around all day.
*

  • Found only 1 short alarm call on yesterday eve’s recording.
  • 10:53 New call, I think GreatTits, cos both were around. 13:18 warning call from some small bird (wasn’t a normal wren warning I think).
  • Tiny bird, wren I think - or smaller?
  • Woodpigeon nest 17:43 Bit worried woodpigeon’s left the nestling, or even the nest is empty, but turned out nestling was just hiding, beak moving to and fro, see head clearly, enormous beak on small head, and read it’s normal for the parents to leave it unattended even the whole day after a time (Tuesday on nest all the time, esp. in rain). Keeping an eye on it, esp. cos it’s a single one, not 2 as is usual, and I hear the 2 magpies.
  • Blackbirds: Young blackbirds 16:19 bathing again 18:02 trying for serviceberries. Enjoying Neighbour male blackbird’s squeaks in his song. 21:55 Two males sitting on neighbour’s garden house (right) without the least battling or scolding 1m away from each other. One flies away, the other one preens itself. So relaxed now the kids have flown.
  • Robin song: Listening out for the 1 motif, if arpeggios up then down, then like Abba’s !Arrival?

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel scratching open cornel cherries :white_check_mark:)
Bats 0. Bank voles 13:18 :white_check_mark:. Insects: bees, bugs :white_check_mark:
8:50 Guinea pigs doing as well as can be, bigger one’s teeth are OK, smaller one is happy when I feed him.
e) Human life: (TT n/a. Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark: Music listening :white_check_mark: Nice talks :white_check_mark:)
f) Environment: (Outdoors :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)
Foggies: (Body (:x:). Brain (:x:).)
Simplified:

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-18 Tuesday

Summary:

  • Decreasing LDN from tomorrow. May 20th- 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 11% :x:, energy profile “very slow” :x:, TT imp. :x:, jackknives OK (:white_check_mark:), walking / cycling 10’ :x:.
  • Triggers: Stumbling and losing my balance to me seems a bit more body fog than sense of balance alone. Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:. 0 bites :white_check_mark:.
  • Last focal seizure: Jun 5th (9d) - now 12d :white_check_mark:.
  • Sleep: Screen curfew 19:50, but then ➔ 1h(?) late :white_check_mark::x:, late bed cos of: pic identifying addiction :x:. QCS no, still deep sleep :white_check_mark:. Airing: 4h :white_check_mark:.
  • Thoughts: -
  • Feelings: Pic addiction, altho at the same time simplifying: allowed.
  • Cheer: Garden fuller and busier. Woodpigeon parents back on nest. Beautiful blackbird songs, no longer territorial.
  • Simplifying/Self-care: Image identifying indoors/balcony whilst feeding / cooking, with better wifi, audio notes downstairs.

Pic(k)s of the Day

= expanding happiness

Coming up today: 2x squirrel feeding, clouds, grass, 2x willowherb, bush roses, willowherb, nipplewort, bumblebee, honeybee, Asian ladybird, harvestman, woodlouse, flies, moth, spider, snail, 9x nearer/more swifts.

Squirrel:


Environment: Cloud Nine…:

Plants:
Bent grass:


Small flower willowherb soon to blossom:

"Small flower willowherb bottom leaves even redder now:*

Bush roses on street opposite my window:

Broad-leaved willowherb:

Nipplewort flowers again:

White-tailed bumblebee on fiddleneck in front of house:

Western honeybee on deadwood in front of house:

Another Asian ladybird:

Harvestman (“daddy longlegs” = aren’t spiders), I think fork-palped or similar:

Light brown woodlouse with dark brown head, maybe “shiny” - fascinating variety, beautiful wooden colour:

Small yellow-legged robber fly, I think, altho the white neck seems strange, should be thinner:

Marsh hover fly’, sun fly, thought it was a marmalade fly first, so nice to find a new sort just as pretty:


Another surprise, not a fly, a moth, Argyresthia albistria, I’m pretty sure (but it should be flying at night?):

Crab spider, xysticus:

A lighter banded snail - I’ve always loved these, never knowing what a variety there is:

Swifts: only nearest and ones where there are several on 1 pic. It’s hard with their speed to get all 6 or even just 3 close, but I’ll keep trying:



VID_20240618_090855 1'35'' 1 swift near 1


VID_20240618_090855 10'12'' 1 swift near


LDN: Decreasing tomorrow. May 20th- 3.5mg (Mar 21st-May 19th 3mg), click for effects/dosage...)

10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. :white_check_mark: (Slowly up from Oct 1st ~0.07mg.
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th :white_check_mark:.) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 3-10' ➔ 80%/4 ❌, music 15' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT imp. ❌, moving ➔ 80%/3-4 (✅), balance (✅), body fog (❌), jackknives ✅, SO post exertional malaise ❌, "post postural ache", "PPA" ❌, stiffness (✅), exhaustibility theoretically "70%" ✅ / actually 89% ❌ and sleep 7h58 ✅ (Airing: 4h ✅. vQvCS: nope ✅, "PPA": 2 ✅). Energy profile: since Jun 10th "very slow", with "9h rest", 4h very slow, 3h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 7h58, 25' deep doze (✅), QCS nope. QCS = very quick very cold shower (22 issues under control).

Sleep 23:40-7:50 4*3’, of that 25’ deep doze. Sum: h20+7h50-(x5’=)12’ = 8h10-12’ = 7h58.
23:40 after pic addiction, back & q6
1:48 3’ 1st street light’s out
3:59 3’ 2nd mainly robin’s singing, blackbird only in distance, shut, plugs
6:00 3’ 3rd throat dry, deep
7:23 4th simplify blog
7:50 up, only deep dozing 25’

2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on. Click for latest (Jun 7th) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, coming up: (Jun 10th) public health officer. Then make another GP appt. and (Jun 26th) Cardio.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Watch GABA intake (compliance) better! Resumee Jun 2nd of Creatine monohydrate Apr 9th- 2x5g for more (slow) energy has had a small positive effect, but less than the LDN. Might be trying creatine malate next. Last seizure Jun 5th (2), 9 days since last. Last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2), May 2nd (1) 13th (1). Click for latest (May 13th) & next changes...

Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Jun 5th (2) May 27th (1) 21st (1) 13th (1) & 2nd (1). Apr 22nd (2) & 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st 2024. 2023: Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCKs May 7th. Oct 21st.)

Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Jun 5th (2) (9:54 rabbit holing, 17:52 beginning of TT, from less GABA). May 27th (1) 21st (1 after TT, forgot some GABA) & 13th (1: too little sleep) 2nd (1: after TT) Apr 22nd (2: after TT), 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. LDN May 20th 3.5mg (Mar 21st-May 19th). 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:

  • Arms keep really hurting and strained from holding phone steady, whether films or close-ups. Can’t manage to pick the cherries atm.
  • Ate early, see if down early
  • Stumbling and losing my balance to me seems a bit more body fog than sense of balance alone
  • Pic addict.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

  • Rose campions 150, bellflowers after deadheading, first 2 suneyes.
  • Cherries ripe.

b) Birds:
(Every day cheer, song/calls/seen, new order of frequency Jun 9th, with :heavy_plus_sign: = increase: Woodpigeons :white_check_mark: Blackbirds :white_check_mark: Robins :white_check_mark: Sparrows :white_check_mark: Blackcap :heavy_plus_sign: :white_check_mark: Great Woodpecker gone, Swifts 16x :heavy_plus_sign: :white_check_mark:, Magpies :white_check_mark: Jacks :heavy_plus_sign: :white_check_mark:, Birds bathing 8x :white_check_mark:), Raven(s) a lot :heavy_plus_sign: :white_check_mark:, and these all minimized :heavy_minus_sign:, (maybe hatching): Great&BlueTits :white_check_mark: Dunnocks 0, (Chaffinch 0) (Chiffchaff 0) Collared dove :white_check_mark:, (Nuthatches 0).
Latest / earliest robin song: …22:40/ <4:00…

(Regular cheer, song/calls/seen - all :heavy_minus_sign: = decrease: Wren(?))

  • Magpies in cherry and on garden house roof several times a day.
  • Woodpigeon nest: parent back on, good seeing as magpies around and raining most of the day. Standing over nestling like an umbrella, not sitting. Other woodpigeons look bedraggled, thin and darker, wet thru, but don’t seem to need shelter, sitting on chimney.
  • Singing: 16:58 Taped neighbour blackbird subsong and bursts of loud with lovely squeaks and whistles above in cherry pretty long whilst it’s pouring. Blackie singing in the street area. No boundaries any more. 17:21 Blackcap, GreatTits & swifts loud again, as rain’s calmed down.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats 0 Bank voles 0. Insects: bees, bugs more :white_check_mark:

  • Squirrels: in cornel cherry. Near.
  • Tiny spherical “crab spider” on my mat, xysticus. And more.

e) Human life: (TT n/a. Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark: Music listening :white_check_mark: Nice talks :white_check_mark:)
f) Environment: (Outdoors :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)
Foggies: (Body (:x:). Brain (:x:).)
Simplified: Do image identifying upstairs (indoors/balcony) whilst feeding / cooking, with better wifi, audio notes downstairs (cellar entrance/veranda).

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-19 Wednesday

Summary:

  • LDN Lowered Jun 19th back to 3mg. May 20th- 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 10% (:x:), energy profile “very slow” :x:, TT imp. :x:, jackknives - weirdly :white_check_mark:, walking / cycling 10’ :x:. Holding phone steady for pics/films is strenuous sports exercise! :x:
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:. 0 bites :white_check_mark:.
  • Last focal seizure: Jun 5th (9d), since then 14d.
  • Sleep: Screen curfew 0:30 :x:, late bed cos of: camera “:x:”. QCS at 6:00 ➔ 1.5h deep sleep (:white_check_mark:). Airing: 5h :white_check_mark:.
  • Thoughts: -
  • Feelings: I don’t know if I really want that camera, but my wife feels I do. Once I’ve got it, doesn’t mean I need to use it.
  • Cheer: 19:03 hatchlings chirping begging in 2nd GreatTit nesting box! Bumblebee hoverfly! Both gold lacquer wallflowers! Moth. 5 different snails.

Pic(k)s of the Day

= expanding happiness
Blossoms:
The darker rose campion here is what the normal ones actually look like, I’ve learnt cameras aren’t much better at deep purple colours, the pics need to be reworked to show them as they are:


Another rose campion nicely offset amidst my stone “pyramid”

My first evening primrose blossom (neighbour has tons, but I think the cherry shadow makes everything come later in my garden, and I think she coaxes them, whilst in mine they have to fight themselves thru grasses and concrete (not native):

Oh how wonderful, the wallflower, or I prefer the German name “gold lacquer” is coming again, here the red-orange one:

and also the yellow one, I loved these when I first discovered them:

And another red rose has appeared, I need to cherish each single one as they’re not gonna be abundant this year I don’t think, after the first flash of about 20:

Snails with a large variety of colours:
This I think is a baby…:

and this one with the least colour:

here a lovely uniform orange brown:

here regularly brown and white alternately:

but wow, what striking colours here:

Insects:
Butterfly/moth, controversial, to us it looks more like a moth, Tawney Grey or occasionally “little grey moth”, in German occasionally hawthorn moth:


Flies - with a big surprise!!!:
*Variable duskyface fly (in German black head hover fly, altho the head often doesn’t shine black). I think I’ve had this one without being able to identify it, so another mystery solved:

Like this light orange brown colour, but can’t get it identified - yet:

And I thought strange, how come this bumblebee has a face like a fly, and sure enough, it’s another expert mimic, a bumblebee hoverfly!!



Small brown spider, can’t get it identified:
Spinne auf Goldtaubnessel
And our redbrown squirrel (his partner nearby), in a hanging pot - I looked in the pot when he was gone, but nothing to be seen that he’d been there, altho he was eating there for 3-4 mins:

LDN: Jun 19th 3mg (May 20th-Jun 18th 3.5mg), click for effects/dosage...)

Mar 21st-May 19th 3mg, Mar 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. :white_check_mark: (Slowly up from Oct 1st ~0.07mg.
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th :white_check_mark:.) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st 3mg. May 20th 3.5mg. Jun 19th 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/4 ❌, music 5' ➔ 80%/4 (some nausea, some strain) (❌), white lips 70-80% (❌), TT imp. ❌, moving ➔ 80%/4 - Holding phone steady for pics/films is strenuous sports exercise ❌, balance (✅), body fog (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (❌), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually 90% ❌ and sleep 6h29 ❌ (Airing: 5h ✅. vQvCS: 6:00 ✅, "PPA": 2 ✅). Energy profile: since Jun 10th "very slow", with "10h rest", 4h very slow, 2h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 6h29, all deep ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 0:35-7:43 x5’, 0 deep doze. Sum: h+h-(x5’=)39’ = 7h08-39’ = 6h29.
0:35- back
2:49 1st 3’
4:45 2nd 3’ air, plugs in now
5:43 3rd 33’, closed all 3, ear plugs out again, looked up bidding, 6:07 QCS, 6:16 4th GABA bed
-7:43 up or not? 7:58 bed again or not? 8:38 bed again or not? 8:43 bed? 8:55 5’ doze, then gave up.

2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on. Click for latest (Jun 7th) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, coming up: (Jun 10th) public health officer. Then make another GP appt. and (Jun 26th) Cardio.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Watch GABA intake (compliance) better! Resumee Jun 2nd of Creatine monohydrate Apr 9th- 2x5g for more (slow) energy has had a small positive effect, but less than the LDN. Might be trying creatine malate next. Last seizure Jun 5th (2), 9 days since last. Last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2), May 2nd (1) 13th (1). Click for latest (May 13th) & next changes...

Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Jun 5th (2) May 27th (1) 21st (1) 13th (1) & 2nd (1). Apr 22nd (2) & 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st 2024. 2023: Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCKs May 7th. Oct 21st.)

Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Jun 5th (2) (9:54 rabbit holing, 17:52 beginning of TT, from less GABA). May 27th (1) 21st (1 after TT, forgot some GABA) & 13th (1: too little sleep) 2nd (1: after TT) Apr 22nd (2: after TT), 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. LDN May 20th 3.5mg (Mar 21st-May 19th). 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:

  • As wife asked me to get a camera, I started looking for a tripod (23:13), then ending 0:30 bidding for a Canon camera and zoom lens, starting cheap and it’s a really good expensive one.
  • Computer tells me the time every 15’. Not helping tho.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
Both gold lacquer wallflowers!

b) Birds:
(Every day cheer, song/calls/seen, new order of frequency Jun 9th, with :heavy_plus_sign: = increase: Woodpigeons :white_check_mark: Blackbirds :white_check_mark: Robins :white_check_mark: Sparrows :white_check_mark: Blackcap :heavy_plus_sign: :white_check_mark: Great Woodpecker 0. Swifts 16x :heavy_plus_sign: :white_check_mark:, Magpies 2 :white_check_mark: Jacks :heavy_plus_sign: :white_check_mark:, Birds bathing 8x :white_check_mark:), Raven(s) 2 :white_check_mark:, Great&BlueTits :white_check_mark: and these all minimized :heavy_minus_sign: (maybe hatching): Dunnocks 0/:white_check_mark:, (Chaffinch nearby :white_check_mark:) (Chiffchaff nearby :white_check_mark:) Collared dove :white_check_mark: , (Nuthatches 0).
Latest / earliest robin song: …22:40/ <4:00…

(Regular cheer, song/calls/seen - all :heavy_minus_sign: = decrease: Starling! Song thrush.)

  • Ravens, young starling in neighbour’s cherry, Great&BlueTits incl. BlackBlueTit, swifts, blackcap, small … willow warbler?
  • 18:11 jacks cute calls
  • 19:03 hatchlings chirping / begging in 2nd GreatTit nesting box!
  • 22:30 song thrush in the distance (small lake)
  • 4:45 GreatTit already singing

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats: Both 1 Pipistrel and 1 big brown bat :white_check_mark: Bank voles (:white_check_mark:). Insects: bees, bugs :white_check_mark:
Flies and bug underwater in aqua-sandarium, water now covering all sand.
Bumblebee hoverfly! Moth! 5 different snails!

e) Human life: (TT n/a. Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark: Music listening :white_check_mark: Nice talks :white_check_mark:)
f) Environment: (Outdoors :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)
Foggies: (Body (:x:). Brain (:x:).)

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-20 Thursday

Summary:

  • LDN reduced Jun 20th to 1.5mg: Brilliant sleep, but frontal sinusey headache, all Friday, maybe only temporary. Jun 19th 3mg. May 20th- 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 10% :x:, energy profile “very slow” :x:, TT imp. :x:, jackknives :white_check_mark:, walking / cycling 5’ :x:.
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:. 0 bites :white_check_mark:.
  • Last focal seizure: Today, Jun 20th (+15d). Jun 5th (+9d).
  • Sleep :white_check_mark:: Altho Screen curfew late :x:, late bed cos of: guinea pig and camera/lens bidding “:x:”. QCS at 10:00 :white_check_mark:. Airing: 4h :white_check_mark:.
  • Thoughts: -
  • Feelings: After the first rush I need to be more restrained about bidding on camera etc.
  • Cheer: Grandkid 30’! Beautiful scene: Willow warbler? and blackcap! bathing! in the aqua-sandarium! Robin watching!

Pic(k)s of the Day

= expanding happiness

Discovered some more purple fairy bellblowers at the back of the garden:


Awmless brome-grass? or tall fescue? - again a beautiful grass:

Pity this tree around the corner had to be cut up, but lovely to look at wood and I took a bit for my street plants:

New snails, yesterday’s were all banded, even if we can’t see it, same as this new brown-lipped one, seems most are brown-lipped here:


This tiny one had muck on it, and turned out that it didn’t move a day, so is no longer alive, but still sweet. So often do I think something is muck and it turns out to be a creature, so now I inspect everything, just in case:

How’s my friend the Asian invader doing?:

Swift groups and nearer. Wing span is 40cm. One has been recorded to have been in the air for 10 months without a single break:


VID_20240620_085846 Swifts.mp4 3'24'' 1 in sun 1
VID_20240620_085846 Swifts.mp4 3'24'' 1 in sun 2
VID_20240620_085846 Swifts.mp4 3'24'' 1 in sun 3
VID_20240620_085846 Swifts.mp4 3'24'' 1 in sun 4
VID_20240620_085846 Swifts.mp4 4'19'' 1 near 1
VID_20240620_085846 Swifts.mp4 4'19'' 1 near 2

LDN: Jun 20th 1.5mg: Brilliant sleep, but frontal sinusey headache, all Friday, maybe only temporary. Jun 19th 3mg. May 20th-Jun 18th 3.5mg (Mar 21st-May 19th 3mg), click for effects/dosage...)

10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. :white_check_mark: (Slowly up from Oct 1st ~0.07mg).
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th :white_check_mark:.) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 5' with grandkid/mum, neighbour more but with lots of breaks ➔ 80%/4 ❌, music 20' a bit better ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT imp. ❌, moving ➔ 80%/3-5 ❌, balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), "post postural ache", "PPA" (❌), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually 90% ❌ and sleep 7h33 ✅ (Airing: 4h ✅. vQvCS: 10:00 ✅, "PPA": 2 ✅). Energy profile: since Jun 10th "very slow", with "10h rest", 4h very slow, 2h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 7h33, all very deep ✅, QCS at 10:00 QCS = very quick very cold shower (22 issues under control).

Sleep 0:10-7:55 3x4’, 0 deep doze. Sum: 7h55-h10-(x5’=)12’ = 7h45-12’ = 7h33.
0:10- q6 + back exercises
4:06 1st! Blackbirds and robins, 0 else.
6:24 4’ 2nd must be LDN. Frontal sinusey headache.
7:35 3rd wonderfully deep
7:55 up, 8:10 4th GABA

2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on. But Jun 20th: Are these flares worth it?! Click for latest (Jun 7th) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, coming up: (Jun 10th) public health officer. Then make another GP appt. and (Jun 26th) Cardio.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): 23:19 focal seizure from the culmination of guinea pig not being able to eat properly, bidding for the camera unsuccessful, and being misunderstood writing to the seller. 9:13 praps it’s the ALA half an hour before the first meal setting my acid off and causing the liquid stools sometimes, maybe if I wait too long before eating? Watch GABA intake (compliance) better! Resumee Jun 2nd of Creatine monohydrate Apr 9th- 2x5g for more (slow) energy has had a small positive effect, but less than the LDN. Might be trying creatine malate next. Last seizure Jun 5th (2), 9 days since last. Last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Jun 20th 1.5mg. Jun 19th 3mg. May 20th-18th 3.5mg. Mar 21st-May 19th 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2), May 2nd (1) 13th (1) 21st (1) May 27th (1) Jun 5th (2) Jun 20th (1). Click for latest (May 13th) & next changes...

Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Jun 20th (1).Jun 5th (2) May 27th (1) 21st (1) 13th (1) & 2nd (1). Apr 22nd (2) & 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st 2024. 2023: Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCKs May 7th. Oct 21st.)

Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Jun 5th (2) (9:54 rabbit holing, 17:52 beginning of TT, from less GABA). Jun 20th (1).Jun 5th (2) May 27th (1) 21st (1 after TT, forgot some GABA) & 13th (1: too little sleep) 2nd (1: after TT) Apr 22nd (2: after TT), 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), LDN Jun 20th- 1.5mg. Jun 19th 3mg. May 20th-Jun 18th 3.5mg. Mar 21st-May 19th 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. LDN Jun 20th- 1.5mg Jun 19th 3mg. May 20th-Jun 18th 3.5mg (Mar 21st-May 19th). 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:

  • Tooth guinea pig is sometimes depressed, distracts, gets hyperactive, probably hunger and mouth pain, but also often squeaks cheerfully when I feed him. Wife comforting and calming me, not to worry about him not able to eat at all, I suggested pain killer and hope that’ll bring it back to normal.
  • Wondering together with my wife if disability is really worth it, need to take a break from the idea.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
Red wallflower, yellow wallflower, more evening primrose blossoms.
b) Birds:
(Every day cheer, song/calls/seen, new order of frequency Jun 9th, with :heavy_plus_sign: = increase: Woodpigeons :white_check_mark: Blackbirds :white_check_mark: Robins :white_check_mark: Sparrows :white_check_mark: Blackcap :heavy_plus_sign: :white_check_mark: Great Woodpecker :heavy_plus_sign: :white_check_mark: Swifts 16x :heavy_plus_sign: :white_check_mark:, Magpies :white_check_mark: Jacks :heavy_plus_sign: :white_check_mark:, Birds bathing 8x :white_check_mark:), Raven(s) 0, and these all minimized :heavy_minus_sign:, (maybe hatching): Great&BlueTits :white_check_mark: Dunnocks 0, (Chaffinch :white_check_mark:) (Chiffchaff nearby :white_check_mark:) Collared dove :white_check_mark:, (Nuthatches 0).
Latest / earliest robin song: 22:40/ <4:05

(Regular cheer, song/calls/seen - all :heavy_minus_sign: = decrease: Wren)

  • Woodpigeon parent sitting next to the nest, not on it any more
  • 2 swifts came out of neighbour house’s natural nest. Neighbour in our house told me when the neighbour house was renovated, they had to “throw birds out” – always guessed. Nice to know.
  • Magpies heard and saw 1x, BlueTit, blackbirds bathing,
  • 12:23 Blackbird subsong with alarms in it in the hazel, was that a young one or adult and which? Then flew past me, but I didn’t realise.
  • 17:32 Beautiful scene!: Bathing in the aqua-sandarium were tiny brown-grey bird, praps willow warbler, still not identified, and then our male blackcap, so this is now my biggest birdbath! Robin came up to me curiously and bathed in a normal bird bath, but had a look at them in the big one, hopped on to the twigs there, and again, when they’d left, but decided it’s not his size. I don’t think the little bird didn’t have any kind of ‘cap’ so doubt it was a female or young blackcap.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank voles :white_check_mark:. Insects: bees, bugs :white_check_mark:. Snails/slugs :white_check_mark:.
Yesterday’s 5 snails were all banded, whether we see the bands or not. And more brown-rimmed than white.

e) Human life: (TT n/a. Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark: Music listening :white_check_mark: Nice talks :white_check_mark:)
Lovely to see grandkid and mum. Managed to partake in her playing with lively mimicry rather than talking, which she much appreciated.

f) Environment: (Outdoors :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)
Foggies: (Body (:x:). Brain (:x:).)

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-21 Friday

Summary:
(Updated & simplified template Jun 22nd)

  • LDN Jun 20th- 1.5mg Jun 19th 3mg. May 20th-Jun 18th. 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 12% (:x:), energy profile “very slow” :x:, TT 1:0 (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:. 0 bites :white_check_mark:.
  • Last focal seizure: Jun 20th (+15d).
  • Sleep: Screen curfew 19:46 screen curfew. :white_check_mark:, no too late bed “:white_check_mark:”. QCS at 9:00 :white_check_mark:. Airing: 8h! :white_check_mark::white_check_mark:.
  • Thoughts: -
  • Feelings: -
  • Cheer: Woodpigeon nestling is now a brancher, altho doesn’t yet look quite like a woodpigeon with that “long” beak.

Pic(k)s of the Day

= expanding happiness
Coming up today: Wallflower, suneyes collage and singly, 2 hydrangeas, a grass, carder-bee collage, 3 snails, 2 woodlice
Again my beloved wallflower:


The suneyes (oxeyes) will need to be cherished like the roses:
And here I’ve started piecing together as a collage:

But singly too:





The biggest newest hydrangea/hortensia, with a few details:



The medium, older hydrangea/hortensia:

And a grass I hadn’t noticed before, nice colour, not identified:

I knew this isn’t the normal white-tailed bumblebee: it’s a carder-bee, maybe just as normal, but not here it ain’t (and everything is special, anyway):

3 banded snails, all brown-lipped, then a more normal(?) rough woodlouse and the ‘Starsky’ shiny woodlouse. Who ever thought they all look the same? ;-P:





LDN: Looking back, increasing to 3mg has not helped with anything, if anything harmed, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy. Frontal sinusey headache all Friday, maybe only temporary. Still a bit of a headache, but movements like walking on clouds, lighter, easier, less stiff. At 22:44 slight sinus burning and headache at back of head. But from halving: I think my body will get used to the lower dose. I’d noted that 3mg was worse, and pushing thru hasn’t worked. Jun 19th 3mg. May 20th-Jun 18th 3.5mg, click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th :white_check_mark:.) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - “better than 3mg”. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/4 (❌), music 10' ➔ 80%/4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 1:0 - 1:0 in thunder and slight rain, with muck on table, just about able to play, but winning easily. (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-5 (❌), balance: lose it slightly 3-4x/d (✅), body fog (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually 88% ❌ and sleep 8h25 ✅ (Airing: 8h ✅. QCS: 9:00 ✅, "PPA": 2 ✅). Energy profile: since Jun 10th "very slow", with "10h rest", 4h very slow, 2h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 8h25, all deep ✅, QCS at 9:00 QCS = very quick very cold shower (22 issues under control).

Sleep :-: x5’, 0 deep doze. Sum: 1h10+7h40-(x5’=)25’ = 8h50-25’ = 8h25.
22:50- after back
0:26 15’ 1st air, plugs, cream, q6
2:10 2nd
3:51 3’ 3rd woken by loud robin
6:52 3’ 4th air, plugs still in, deep
7:40 up, dry mouth 1h, plugs still.

2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on. But (Jun 20th): Are the 7+ day-flares after appts. worth it?! Click for latest (Jun 22nd) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, coming up. Jun 10th appt. with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio, or postponing.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Re-order silymarin?? Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Jun 20th (1) (+15d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 (Jun 20th 2024). Stress, histamine & less GABA. JUN 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

Last esophagus BLOCKS: May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating if slightest pressure, 0224-06-22: better acid / gut.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing, tinnitus & balance problems for 15h. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) More Suneyes, wallflower, hydrangea fully developed (a 3rd seems dead, the 4th on the balcony is slow, cos too shaded).
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Blackbirds :white_check_mark: Robins :white_check_mark: Sparrows :white_check_mark: Blackcap :white_check_mark: Swifts 20x :white_check_mark:, Magpies (:white_check_mark:) Jacks :white_check_mark:, bathing 8x :white_check_mark:), Raven(s) :white_check_mark:, Great&BlueTits (back and in nesting box) :white_check_mark:, Collared dove back :white_check_mark:.
Latest / earliest robin song: …22:40/ <3:50 (loud!)…

(Regular cheer, song/calls/seen - Chaffinch :white_check_mark:, Chiffchaff nearby :white_check_mark:, Wren :white_check_mark:, Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June 0)

  • 8:12 Woodpigeon nestling is now a brancher, up sitting next to parent on neighbour’s garden house. 16:43 back on nest, bedraggled after thunderstorm, not protected by parent.
  • Singing 11:28 taped blackbirds and chaffinch (song and rain call) and wren (all morning). Sparrows, Great&BlueTits

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank vole(s) :white_check_mark:. Insects: bees, flies, spiders, butterflies & bugs :white_check_mark:. Snails & slugs :white_check_mark:.

e) Human life: (TT? :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Art: my paintings :white_check_mark: Music listening (:white_check_mark:) Nice talks (:white_check_mark:) Kids? :white_check_mark: Friends? :white_check_mark: Family? :white_check_mark:)
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body (:x:). Brain (:x:).)

Simplified: Cleaning ear plugs with tissue is enough for a while, I’d been using new ones every day, then cleaning them all under water together.

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-22 Saturday

Summary:
(Updated & simplified template Jun 22nd)

  • LDN Jun 20th- 1.5mg Jun 19th 3mg. May 20th-Jun 18th. 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 13%, improving from 10% from reducing LDN (:x:/:white_check_mark:), energy profile “very slow” :x:, TT n/a, jackknives :white_check_mark:, walking / cycling 15’ (:x:).
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:. 0 bites :white_check_mark:.
  • Last focal seizure: Jun 20th (+15d).
  • Sleep: Screen curfew 20:20 cos did template new :white_check_mark:, late bed cos of that, plus cooking, and guinea pig. “:white_check_mark:”. QCS at 11:00 :white_check_mark:. Airing: 8h :white_check_mark:.
  • Thoughts: -
  • Feelings: -
  • Cheer: See pics.
  • Research: Silymarin is not evident, but promising, incl. for lipids, so I’ll order it again.

Pic(k)s of the Day

= expanding happiness

Coming up today (from conventional beauty to unconventional): Roses, ammonites, evening primrose, grass, bellflowers with hydrangea, robin singing, bee moth, common marble, bird-cherry ermine, large cabbage white, crane fly:

Plants:
Red roses against blue sky:


Rose campions blossoms are now around 200, that’s close to double last year… - as non-native I may have to keep them in check:

Ammonite fossils in potting table behind grass in sun, got both from neighbour who found them himself, 2nd one a few days ago:

Evening primrose blossoms at night (to be improved ;-)):


Grasses in green grass - cutting the grass down to 20-25cm is revealing yellow grass roots in some areas, but also making it greener, and I think that’s gonna happen everywhere now. The guinea pigs are thoroughly enjoying me cutting the grass mosaic wise, fresh grass 3x a day, even tho I leave it half a day so any insects have a chance to move:

Light purple fairy bellflower, darker wilted blossom, besides hortensia buds & leaves - contrast native vs. foreign, and good for insects vs. pretty useless (I’ll have to have a closer look, having read it up, but I fear they are deceptive for insects, that’s the reason why I let them become closed in with ivy, these bellflowers, mugwort etc.):

Robin singing a duet with me on the lower cherry branch in front of the veranda several minutes:
VID_20240622_131407.mp4 0'15'' Rotkehlchen singt auf unterem Kirsch-Ast Mund offen

Insects: 3 moth butterflies, 1 butterfly butterfly (remember moths are butterflies, hard to distinguish), crane fly, spider:
3 beautiful moths (left out a brown moth I couldn’t identify cos I could only catch it in flurrying flight):
Bee moth / green honey moth:


Common marble - clear why, or dark strawberry tortrix. The German name “Lacunana-Wickler” accidentally reminds of the band name “Lacuna coil” (Wickler could be said to mean coiler):

Bird-cherry ermine - hmm, what’s this one doing on the rhododendrons under our sweet cherry, if normally only on bird cherries? (Which confusingly is called bird cherry in Latin):

Large cabbage white butterfly - the two wing spots each side mean it’s a female (to be improved…):
VID_20240622_171502.mp4 0'19'' Großer Kohlweißling, Weibchen Pieris brassicae large cabbage white
Crane fly with a sun shadow (left out marsh mosquito (not sure why), beetles: rough-haired Lagria beetle & Vine weevil cos I’ve got better pics of those already):

*Spider (left out cellar spider & steatoda nobilis, cos blurry), this is a triangulate cobweb spider throwing a nice shadow in the phone torch light:

LDN: Lightness has remained, headache gone, I can go up and down stairs more easily, but my radius/limit is almost the same, just I can do more inside that limit, sleep still good, pee urge/frequency reduced helps. Looking back, increasing to 3mg has not helped with anything, if anything harmed, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy. Frontal sinusey headache all Friday, maybe only temporary. Jun 19th 3mg. May 20th-Jun 18th 3.5mg, click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th :white_check_mark:.) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - “better than 3mg”. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 20', improving a little ➔ 80%/3 (❌), music 10' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT n/a, moving ➔ 80%/3-5 (✅), balance (✅), body fog (❌), jackknives ✅, SO post exertional malaise (❌), 'post postural ache', 'PPA' (✅), stiffness (✅), exhaustibility theoretically '70%' ✅ / actually 87% ❌ and sleep 7h41 ✅ (Eye mask the other day cos blackout blinds don't keep out all the sun if the windows are open. Airing: 8h ✅. QCS: 11:00 ✅, 'PPA': 2 ✅). Energy profile: since Jun 10th 'very slow', with '10h rest', 4h very slow, 2h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 7h41, all deep ✅, QCS at 11:00 QCS = very quick very cold shower (22 issues under control).

Sleep 0:15-8:34 4+4+22+4+4’, 0-30? deep doze. Sum: h+h-(x5’=)’ = 8h19-38’ = 7h41.
0:15 after back
2:44 1st
04:13 2nd ear plugs back cos of the odd Saturday night talking cyclists. Didn’t even feel pee urge.
5:09-26 22’ q6 3rd
7:35 4th thought of getting up, but better not
8:34 up, seemed like only deep dozing, but longer than I expected.

2) Watching TRIGGERS, esp. of exhaustibility. LDN is managing to counteract all these triggers now I've reduced it, so maybe since February part of the flares is the LDN not being dosed right (but it'd've been the same without LDN I believe). Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on. But (Jun 20th): Are the 7+ day-flares after appts. worth it?! Click for latest (Jun 22nd) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, coming up. Jun 10th appt. with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio, or postponing.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Re-ordering silymarin: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Jun 20th (1) (+15d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 (Jun 20th 2024). Stress, histamine & less GABA. JUN 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

Last esophagus BLOCKS: May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating if slightest pressure, 0224-06-22: better acid / gut.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Re-ordering silymarin: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing, tinnitus & balance problems for 15h. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today: silymarin seems not “evident”, but “promising”
Impact of Silymarin Supplements on Liver Enzyme Levels: A Systematic Review - PubMed 2023
Silymarin and Inflammation: Food for Thoughts - PubMed 2024 vivo/vitro
Role of silymarin as antioxidant in clinical management of chronic liver diseases: a narrative review - PubMed 2022 3x0.14g
Silymarin: Unveiling its pharmacological spectrum and therapeutic potential in liver diseases-A comprehensive narrative review - PubMed 2024 promising
The effects of Silymarin on the features of cardiometabolic syndrome in adults: A systematic review and meta-analysis - PubMed 2022 reduced glucose, total cholesterol, triglyceride, LDL, and increased HDL compared to placebo. But high heterogeneity.
Effects of silymarin supplementation on liver and kidney functions: A systematic review and dose-response meta-analysis - PubMed 2024: May ameliorate certain liver markers with potential hepatoprotective effects, specifically with long-term and high-dose supplementation.
A Comprehensive Review of the Cardiovascular Protective Properties of Silibinin/Silymarin: A New Kid on the Block - PubMed 2022 improved glucose & lipids, hardly BP. (Great variety in doses and cohorts, the underlying conditions, the small sample sizes, the short duration and the absence of pharmacokinetic/pharmacodynamic tests prior to study.)

Quality of life: 90%

Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Blackbirds :white_check_mark: Robins :white_check_mark: Sparrows :white_check_mark: Blackcap :white_check_mark: Swifts 16x :white_check_mark:, Magpies (:white_check_mark:) Jacks :white_check_mark:, bathing 12x/d :white_check_mark:), Raven(s): still there, varying big caws with breaks and one more plaintive regular one. :white_check_mark:, Great&BlueTits (back, and in nesting box) :white_check_mark:, Collared dove back :white_check_mark:.
Latest / earliest robin song: …22:40/ <4:00… - 5:20 Wood pigeons, swifts, jacks, blackcap, raven!

(Regular cheer, song/calls/seen - Chaffinch nearby :white_check_mark:, Chiffchaff back! :white_check_mark:, Wren :white_check_mark:, Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June 0)

  • Begging noises from woodpigeon branchling in neighbour’s cherry. Woodpigeon nest in neighbour’s big pavement lonicera again.
  • Male Blackbird sunbathing, young ones too a bit, and water bathing, and foraging all around. Always best to look at them out of the corner of my eyes, and not all the time, or via phone camera. They’re getting slightly used to me. A new blackbird is singing beautifully quite often in our garden, not a single same motif as our 3 ones. Young blackbird using bird food bowl for sun bathing and preening… that’s a new one.
  • Sparrowhawk call? (or jay mimicking?)
  • Subsong maybe robin, or blackcap, can’t be sure, cos everything’s changing and I didn’t want to go too near.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank vole(s) :white_check_mark:. Insects: bees, flies, spiders, butterflies & bugs :white_check_mark:. Snails & slugs :white_check_mark:.

e) Human life: (TT? :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Art: my paintings :white_check_mark: Music listening (:white_check_mark:) Nice talks (:white_check_mark:) Kids? :white_check_mark: Friends? :white_check_mark: Family? :white_check_mark:)
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body (:x:). Brain (:x:).)

Simplified:

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-23 Sunday

Summary:
(Updated & simplified template Jun 22nd)

  • LDN Jun 20th- 1.5mg :white_check_mark: Jun 19th 3mg. May 20th-Jun 18th. 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 13% (:x:), energy profile “very slow” to “slow” (:x:), TT n/a, jackknives :white_check_mark:, walking / cycling 20’ (:x:).
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:. 0 bites :white_check_mark:.
  • = LDN vs. appt.-flares: Reducing LDN is curbing the appt.-flares, so I can move a bit more nimbly, energy up a little.
  • Last focal seizure: Jun 20th (+15d). Esophagus block Jun 25th: sweet potato.
  • Sleep: Screen curfew late :x:, late bed cos of: birds, bees, blog, camera, guinea pigs. “:white_check_mark:”. QCS at 10:00 :white_check_mark:. Airing: 6h :white_check_mark:.
  • Thoughts: -
  • Feelings: -
  • Foggies: I can no longer compensate dropping things with fast intuitive body movements. What falls, falls.
  • Simplifying: Less voice notes, pics are enough (time- and example-wise).
  • Cheer: see:

Pic(k)s of the Day

= expanding happiness … re-living loads of exciting moments…
Coming up today: Clouds, blossoms, grass, gosling quintuplets, ducks, heron, guinea pig, ladybird mystery, bit of danger today…:

Just clouds…… drifting….:

Plants
Death come quickly close-up (yeah, that’s really one of the English names! Comes from being used as a herb, so associated with witchcraft (but aren’t many?). It’s been studied for its improving the likes of Parkinson’s):


”Gold lacquer” (once again), studied for inflammation, used as a herb in traditional Persian medicine:

Lazy phacelia (again) in front of the house growing and attracting more and more bees – altho non-native):

”Wooly honey grass in the sun, again:
IMG_20240623_160455 Wollige Honiggras Holcus lanatus im Gras in Sonne smaller
Need to capture it, as I’m harvesting the grass bit by bit, like here cock’s foot:

Birds
Boy have the grey geese quintuplets grown, mum is really proud (dad hasn’t been around a while):


…and here 2 of the goslings – being ‘twins’-plus - are scratching themselves synchronically: at least 5 of their movements were identical, and ended at the same time

The ducklings haven’t developed full plumage yet, but the lake now seems “full” (at least when they think they’re getting fed), more than double, something like 100:

And here also the movements together illustrate them being ‘twins’-plus, these 4 are I think 4 of 8:

2 moorhen littl’uns we saw too, here’s one with mum and goose mum:

When I slow-cycled back home this grey heron flew over 50m in front of me to the {Graben} and then slowly went down:
VID_20240623_174905.mp4 0'17'' Graureiher flog 100m vor mir zum Graben und ging dann langsam rein
This white willow is always an amazing sight:

Taped loads of swifts near, like this:

but now more often a group of 6 near, caught 5 of them…:

…and they were part of a group of 10:

Maybe a small woodpigeon feather, blacker than the pic:


The jacks often sit on 1 or 2 of the houses opposite…:

…if the raven/crow doesn’t come over to play catch with them, a domino effect…:*
VID_20240623_210801 4'11'' Raven-Crow out to chase a row of chattering jackdaws from a roof
VID_20240623_210801 4'11'' Raven-Crow out to chase a row of chattering jackdaws from a roof 2
…or a short time later someone lights a banger after the goal Germany scored against Switzerland (before when people cheered they “answered” but didn’t fly up.):
Listen those few seconds by clicking here (if vocaroo works for you).

The reception team on the antenna (which always call and greet the incoming jacks for the night’s roost) left last, but left too:
VID_20240623_211648 0'07'' Schuss jagt Dohlen hoch, zuletzt von Antenne

Animals: the oat flake tub wasn’t meant for self-service, but our cheeky little tooth guinea pig found out that he can eat them well that way, so loves it, and it’s a nice simplification for my feeding:



Insects
One of many examples where I couldn’t see if it was muck or alive. 2 days later it’s still there, so proves it’s muck:

And this was much tinier, only 1mm, impossible to discern with bare eye, difficult to focus on, but turns out to be the tiniest ladybird there is. I could only find out that ladybirds don’t grow after morphing from larva, but the only ladybird I’ve found that’s 1mm is so rare that I can’t find a pic, and grouped together with ones that don’t look like our typical ladybirds, whilst this does. Here the untidy spots remind us of an Asian ladybug, but they’re bigger than native ones, 5.5-7.5mm. So another mystery – no wonder I’m behind with the blog!:


Here s/he’s moving the right fore-foot, a film snip, so s/he’s definitely alive, but I’m unsure what black thingy s/he’s sitting on, my wife thinks it’s the larva rest, could be. Next day the ladybird was gone and the rest does look a bit lady(bird)like:

This would be the normal pretty big Asian lady beetle, don’t think I’ve had this one yet:

The last ‘nice’ one, a Western honey bee in the trailing bellflowers again. As they were looking bedraggled after I dragged them from the flowerbed over the patio slabs to give the dovesfoot geranium some space, I put some old twigs under them, and that’s helping them recover, whilst the dovesfoot is doing its best:

Warning - now come the beautifully yucky ones…:
The green bottle fly, so lovely shiny and their maggots brilliant bacteria-free for clearing up bad wounds. Couldn’t find out why they’re called gold flies in German, reminds me of the German phrase “to make gold out of shit” – some may say that’s part of my philosophy/attitude…:

This devil’s coach horse beetle (whoa! ;-P) was first under the mat I’d left outside in the damp overnight together with some woodlice, but it was too fast for me yesterday. Then today I found it in the cellar under my shoes, sadly not fast anymore, but at least now immortalized:

A similar sad case. Why is sad a reason to be cheerful? Cos it’s getting to grips with reality, all part of nature, like what’s happened to me, acceptance, this is all a necessary part of creation. So… this cute garden grass-veneer on the cellar door…:

… fell into the threads and hands of pretty steatoda nobilis. In German “noble globe spider”: why do Germans have vernacular names for spiders, the English for once don’t, are they scareder of spiders? ;-P. I find it makes a bit of difference knowing who this is happening to. Spiders keep our world cleaner - like slugs and probably every being - so we leave the webs be that aren’t yet uselessly dusty cobwebs, we have around 6 spiders in our bathroom, and that’s OK and natural. As well as making life easier.

Snails – just a tiny one on the oxeyes/suneyes today:

LDN: Looking back, increasing to 3mg has not helped with anything, if anything harmed, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy. Frontal sinusey headache all Friday, maybe only temporary. Jun 19th 3mg. May 20th-Jun 18th 3.5mg, click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th :white_check_mark:.) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - “better than 3mg”. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 20' ➔ 80%/4 ❌, music 10' ➔ 80%/3 (no nausea, strain less) ❌, white lips 70-80% (❌), TT n/a, moving easy inside a certain 'radius' ➔ 80%/3-4 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache', 'PPA' (✅), stiffness (✅), exhaustibility theoretically '70%' ✅ / actually 87% ❌ and sleep 8h41 ✅ (Airing: 6h ✅. QCS: 10:00 ✅, 'PPA': 2 ✅). Energy profile: since Jun 10th 'very slow', with '8h rest', 4h very slow, 4h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 8h41, all deep ✅, QCS at 10:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:30-8:31 4+4+4+4+4=20’, 0 deep doze. Sum: h30+8h31-(x5’=)20’ = 9h01-20’ = 8h41.
23:30- cos of birds, bees, blog, camera, guinea pigs.
2:03 4’ A3 supps
3:33 2nd, 1st GABA, dry throat, deep sleep, ear plugs since 1st break, airing.
4:09 3rd cos of street blackie, 2nd GABA, throat very dry, so dry mouth gel.
5:18 4th woke from stinging wrist, Traumeel. woodpigeon’s starting made me close 2 of 3 windows, so 6h.
6:59 woke praps from sun, ear plugs back.
-8:31 deeper with windows shut and ear plugs. Frontal Headache 1 + nausea 2-3 for the last few hours.

2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on. But (Jun 20th): Are the 7+ day-flares after appts. worth it?! Click for latest (Jun 22nd) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, coming up. Jun 10th appt. with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio, or postponing.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Jun 25th: block from sweet potato, after it didn't go down, it was very easy to get out again this time. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Jun 20th (1) (+15d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 (Jun 20th 2024). Stress, histamine & less GABA. JUN 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

Last esophagus BLOCKS: Jun 25th: sweet potato. May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating if slightest pressure, 0224-06-22: better acid / gut.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, re-ordering silymarin Jun 24th. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Re-order silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids), see research Jun 22nd. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing, tinnitus & balance problems for 15h. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today
https://www.healthrising.org/blog/2024/06/21/anaerobic-exercise-long-covid-chronic-fatigue-oxygen/
German sport doc Perikles Simon says for Post Covid and ME/CFS we should be doing exercises 30’’ at a time. Well, tell me something new… But now instead of preaching this to everyone, I can say a doc said so, and that Cort reported it.

Quality of life: 90%

Lessons in self-care:
My wife wanted me to stay at the lake, she only had time for 10’, but when she’d gone, I was nauseous after cycling fairly normally there, so decided to go back immediately, which let me see the heron and rest at home.
Reasons to be cheerful: See pics.
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Blackbirds :white_check_mark: Robins :white_check_mark: Sparrows :white_check_mark: Blackcap :white_check_mark: Swifts increased: 30x :white_check_mark:, Magpies often :white_check_mark: Jacks :white_check_mark:, bathing drastically increased today, cos of heat and no wind: 8x/h, I had to fill up the 3 main saucers 5-6x today :white_check_mark:), Raven(s)/crows (I’ve started doubting again) 0, Great&BlueTits (back, and in nesting box, we think) :white_check_mark:, Collared dove back :white_check_mark:.
Latest / earliest robin song: …22:40/ <3:45… (blackbirds mostly finished by 22:15, only 1 22:30)

(Regular cheer, song/calls/seen - Chaffinch :white_check_mark:, Chiffchaff :white_check_mark:, Wren lots :white_check_mark:, Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June 0.

  • Goslings and ducklings in the lake are almost fully grown.
  • 19:23 taped a new kind of squawking near me, but maybe just a young blackbird.
  • 21:19 Raven/crow chased jacks after “they got too loud”, it seemed - couldn’t quite get it on tape. After there was a cheer cos of an EM-goal, jacks moved a little, then something like a gun shot further away, which made them all fly up, whilst the raven/crow made a cawing sound as if laughing.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank vole(s) (:white_check_mark:). Insects: bees, flies, spiders, butterflies & bugs :white_check_mark:. Snails & slugs :white_check_mark:.

e) Human life: (TT n/a. Skip-Bo :white_check_mark: Wife :white_check_mark: Art: my paintings :white_check_mark: Music listening (:white_check_mark:) Nice talks (:white_check_mark:))
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body (:x:). Brain (:x:).) Dropping a boiled egg several times made me jittery, my wife comforted me not to worry. Noticeable that I can no longer compensate dropping things with fast intuitive body movements. What falls, falls.

Simplified: Less voice notes, pics are enough (time- and example-wise).

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-24 Monday

Summary:

  • LDN Jun 20th- 1.5mg Jun 19th 3mg. May 20th-Jun 18th. 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy ’30%’ :white_check_mark:, partly usable = 13% (:x:), energy profile ‚very slow’ to ‚slow‘ :x:, TT 1:1 (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:. 0 bites :white_check_mark:.
  • Last focal seizure: Jun 20th (+15d).
  • Sleep: Screen curfew late :white_check_mark:, late bed cos of: same ':x:‘. QCS at 10:00 :white_check_mark:. Airing: 7h :white_check_mark:.
  • Thoughts: -
  • Feelings: -
  • Cheer:

Pic(k)s of the Day

= expanding happiness
Just clouds again:

Cornflowers now 4 blossoms in that unlikely place on the balcony, but nowhere else altho I’ve placed seeds everywhere in the garden, 2023 and 2024:

Insects:
Looks like a fly, but seems to be a blue-eyed Ensign Wasp, to be confirmed…:


Such useful flies the fruit flies, not sure if this is a brown eyed mutation or the more normal wild red eye sort, have to check that in real life (if I can see with my eyes):

Ah, there’s still some garden grass-veneers around, to feed themselves or be fed upon, this time where they belong, on the grass:

Brown house moth - may seem normal, but I just like to know what they’re called:

This with a millimeter-ruler is we think the rest of the larva of that mini-ladybird or lady bug or lady beetle:

'This was a challenge, cos an Asien larva should have 5 orange spots on each side, and on most photos only 2 were visible, on this one there are 5, on another without blossom there are 5 (just 2 are faint), so that’s another mystery solved. My wife is getting used to my sudden interest in insects, I’d never have thought, she helped me get pics of this for over 5 minutes!:*

*Doesn’t this golden fly look fake? I can’t even remeber where I took it, seems to be indoors, I’ll have to look around. And of course it can’t be identified. Instead of the green bottle this one should be called golden fly. Or even Midas fly!:"
![IMG_20240624_192453 Goldene Fliege auf blauem Textil smaller|690x388]
(upload://uthRDgb3bkp5uYMPZ8LwT4YU89.jpeg)

Mouse antics - trying to hide their food using plaster this time, which is closer than the aluminium and seeds and stuff they used when it was somewhere else. And funnily now I’ve left the lid off they don’t eat as much…: I’m feeding the birds again, esp. for the woodpigeons, alttho the young woodpigeon has gone somewhere else, which is praps good cos of the new wren family being here a lot:

Swift collage. The sun makes the 1st look like an aeroplane, the 2nd the moment before it was flying straight the other way round, so this is semi on its back (hope I’ll catch fully on back, too), and the 3rd just cos close:

LDN: 3mg since Feb hasn't helped, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy, radius same. Side effects from reduction only 1 day and a little on others. Jun 19th 3mg. May 20th-Jun 18th 3.5mg, click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th :white_check_mark:.) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 20' ➔ 80%/4 (❌), music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT : (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (✅), balance (✅), body fog (❌), jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87% ❌ and sleep 8h49 ✅ (Airing: 8h? ✅. QCS: 10:00 ✅, 'PPA‘: 2 ✅). Energy profile: since Jun 10th 'very slow‘ to 'slow', with ‚8h rest‘, 4h very slow, 4h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 8h49, all deep ✅, QCS at 10:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:15-8:25 15+3+3’, 0 deep doze. Sum: h45+8h25-(x5’=)21’ = 9h10-21’ = 8h49.
23:15-
2:12 q6 15’ plugs after trying without, dry mouth, throat OK
3:48 3’ robins since 3:40, and 1 blackbird distance.
5:21 3’ 3rd white 2nd brown pill, dry throat, robin & woodpigeons, 0 blackbirds etc. great&BlueTits, jacs, swifts.
-8:25

2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on. But (Jun 20th): Are the 7+ day-flares after appts. worth it?! Click for latest (Jun 22nd) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, coming up. Jun 10th appt. with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio, or postponing.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Jun 25th: block from sweet potato. Re-ordering (soon) silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Jun 20th (1) (+15d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 (Jun 20th 2024). Stress, histamine & less GABA. JUN 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

Last esophagus BLOCKS: Jun 25th & May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating if slightest pressure, 0224-06-22: better acid / gut.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, re-ordering silymarin Jun 24th. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Re-order silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids), see research Jun 22nd. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing, tinnitus & balance problems for 15h. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:
Keep fearing I’m forgetting something, cos so much to think about and try to get on with. So having a look in my mails at least makes sure the most important things are done. But I should be ordering silymarin and other supps. My inbox (as of now writing on 26th) contains 130 mails, my business inbox 140, my work inbox 31. That last one is easiest, all but 7 had been ‘done’, so shoved them into their respective files, that feels much better!

Reasons to be cheerful: See pics.
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) -
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Blackbirds: all 4 young ones, pecking water and bathing :white_check_mark: Robins :white_check_mark: Sparrows: female in garden :white_check_mark: Blackcap: possibly female around near :white_check_mark: Swifts 30x :white_check_mark:, Magpies (:white_check_mark:) Jacks :white_check_mark:, bathing 20x/h!!: once blackbird and robin came and went bathing together, sometimes just pecking water :white_check_mark::white_check_mark::white_check_mark::white_check_mark::white_check_mark:), Raven(s) :white_check_mark:, Great&BlueTits (back, and in nesting box) :white_check_mark:, Collared dove back :white_check_mark:.
Latest / earliest robin song: …22:40/ <3:40!..

(Regular cheer, song/calls/seen - Chaffinch nearby :white_check_mark:, Chiffchaff nearby :white_check_mark:, Wren family of at least 3 kids, 1 even coming close :white_check_mark::white_check_mark::white_check_mark::white_check_mark::white_check_mark:, Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June 0)
Quite a bit more without noting.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank vole(s) :white_check_mark:. Insects: bees, flies, spiders, butterflies & bugs :white_check_mark:. Snails & slugs :white_check_mark:. Guinea pig really put on weight today, that’s a relief, even tho I know the fight goes on every day relentlessly, like with my own weight.

e) Human life: (TT :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Art: my paintings :white_check_mark: Music listening (:white_check_mark:) Nice talks (:white_check_mark:) Kids 0 Friends at TT :white_check_mark: Family 0) Watching birds together in the evening from the balcony, cos nice n hot.
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body (:x:). Brain (:x:).) Things falling, overwhelming a bit.

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-25 Tuesday

Summary:

  • LDN Jun 20th- 1.5mg Jun 19th 3mg. May 20th-Jun 18th. 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy ’30%’ :white_check_mark:, partly usable = 13% (:x:), energy profile ‚very slow’ to ‚slow‘ :x:, TT 1:1 (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 15’ (:x:).
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:. 5 bites, but only 1 itching a bit, oils enough :white_check_mark:.
  • Last focal seizure: Jun 20th (+15d). 7d since.
  • Sleep :white_check_mark:: Screen curfew at 20:00 first, but then probably another 1h later on :white_check_mark:, late bed cos of guinea pig & tabs/mails ':white_check_mark:‘. QCS at 10:00 :white_check_mark:. Airing: 8h :white_check_mark:.
  • Thoughts: Feeling more and more like a Zen monk sweeping the path walked as free as possible, so no insects are trodden upon :person_in_lotus_position:
  • Feelings: -
  • Cheer: Re-living yesterday’s happy moments took a lot of today… Devil’s paintbrush blossom!! Wren family!! Swifts a joy as ever.
  • Environment: Heat means long johns off, 2 of 5 pairs of socks off, and on again indoors.

Pic(k)s of the Day

= expanding happiness

Only 5 today, I hope re-living isn’t making me experience less? :face_with_monocle::

But best news of the day is the first devil’s paintbrush blossom has appeared like I’ve long been hoping:


and the other best news is a wren family visiting our garden all day, here I can only give a blurry impression of the tiny littl’uns 1st flying to the right, then 3x flying up, and 1x a size comparison, more like a robin than a blackbird. These are the sort of pics a camera would definitely make all the difference for:

A new one, a cute red brown leaf beetle, Serica beetle, belonging to the May beetle and Junebug family, found in the cellar entrance:

Two further banded snails, don’t look that familiar to me, but haven’t checked with the last similar ones…:


LDN: Still nimbler from reduction. 3mg since Feb didn't help, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy, radius same. Side effects from reduction only 1 day and a little on others. Jun 19th 3mg. May 20th-Jun 18th 3.5mg, click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th :white_check_mark:.) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/3 (❌), but high fog ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 1:1, both close, body feeling just as well after as before, just my mate talking increases fog, which he realised himself (moving 15%, talking 15%, counting 20%) (❌), moving very slowly ➔ 80%/3-4 (✅), balance (✅), body fog (❌), jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87% ❌ and sleep 8h05 ✅ (Airing: 8h ✅. QCS: 10:00 ✅, 'PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', with ‚8h rest‘, 4h very slow, 4h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 8h05, all deep ✅, QCS at 10:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:10-7:31 16’, 0 deep doze. Sum: h+h-(x5’=)16’ = 8h21-16’ = 8h05.
23:10-
1:54 10’ laptop transfer 10’, A3 supps, airing, plugs praps out now.
2:00 didn’t really need to pee, slight dry throat.
4:38 street Blackie with 3 common motifs and robins in background. 2 of 3 windows closed, ear plugs in. Praps my Blackie as well, but if so, shortened motifs, so I doubt it. Heard crow/raven, altho 30’ before sunrise. Again didn’t need to pee. 1st GABA!
-7:31 still got 1 A3 GABA I’d forgotten and 3x0.3 GABA to take, but time to get up.

2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Mailed sleep lab psychiatrist if they are able to confirm my chronic fatigue and perhaps diagnose ME/CFS. Trying for higher disability from Apr 25th on. But (Jun 20th): Are the 7+ day-flares after appts. worth it?! Click for latest (Jun 22nd) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, coming up. Jun 10th appt. with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio, or postponing.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): The heat (up to 30° C) means I have to take care not to put on or take off too much. Left long johns on first and partly took 2 of 5 pairs of socks off, but trying long johns off today, feet cold, so have to regulate that via socks. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Jun 20th (1) (+15d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 (Jun 20th 2024). Stress, histamine & less GABA. JUN 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

Last esophagus BLOCKS: Jun 25th & May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating if slightest pressure, 0224-06-22: better acid / gut.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, re-ordering silymarin Jun 24th. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Re-order silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids), see research Jun 22nd. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing, tinnitus & balance problems for 15h. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) Yes, the first devil’s paintbrush blossom has arrived! :partying_face:
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Blackbirds all around, but singing much less :white_check_mark: Robins :white_check_mark: Sparrows: male and female singly, dunno if it’s always the same ones :white_check_mark: Blackcap :white_check_mark: Swifts 20x :white_check_mark:, Magpies cute ‘subsong’ chatter (:white_check_mark:) Jacks :white_check_mark:, bathing 20x/d :white_check_mark:), Raven/crow once or twice a day :white_check_mark:, Great&BlueTits (back, and cheeping in nesting box, I spose GreatTits) :white_check_mark:, Collared dove cooing a lot :white_check_mark:.
Latest / earliest robin song: …22:40/ <4:00… - 3 robins singing at the same time at 22:20, that’s unusual, no blackbirds singing now, praps that’s why.

(Regular cheer, song/calls/seen - Chaffinch occasionally (:white_check_mark:), Chiffchaff too :white_check_mark:, Wren family around all day, dad singing a lot :white_check_mark::white_check_mark::white_check_mark::white_check_mark::white_check_mark:, Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June 0)
12:43 Taped the magpie sweet chatter and robin subsong.
c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank vole(s) yep :white_check_mark:. Insects: bees, flies, spiders, butterflies & bugs :white_check_mark:. Snails & slugs :white_check_mark:.
Quite a few insects that were too fast for me, flies and some golden? bug?

e) Human life: (TT :white_check_mark: Skip-Bo :white_check_mark: Wife - nice to listen to the cheeps of the wren family together, my wife could see them, I stayed back a bit. :white_check_mark: Art: my paintings :white_check_mark: Music listening (:white_check_mark:) Nice talks (:white_check_mark:) Kids 0 Friends at TT :white_check_mark: Family 0)
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body (:x:). Brain (:x:).) Fog high from TT. Have to mono-task. Slow.

Simplified:

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-26 Wednesday

Summary:

  • LDN Jun 20th- 1.5mg Jun 19th 3mg. May 20th-Jun 18th. 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy ’30%’ :white_check_mark:, partly usable = 13% (:x:), energy profile ‚very slow’ to ‚slow‘ :x:, TT imp., jackknives (:white_check_mark:), walking / cycling 15’ :x:.
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:, Jun 26th :x: - went well, but all just too much, not recovered from the ones before yeet. 5 bites, but OK :white_check_mark:.
  • Last focal seizure: Jun 20th (+15d). So 6d now.
  • Sleep :x:: Screen curfew 20:00 (:white_check_mark:), another 30’+ later tho (:x:), late bed cos of: guinea pigs etc. ‚:white_check_mark:‘. QCS at 8:00 :white_check_mark:. Airing: 8h :white_check_mark:. Too short, cos of breaks and doc appt. early. Need to pull forward or at least be more disciplined.
  • Docs: Cardio quick and helpful for reporting fatigue. Sleep lab mailed asking me to phone, but I can’t.
  • Thoughts: -
  • Feelings: Slow. Late. Confused: got something sold (Friday it turned out not), looking for a big tripod and phone adapter, trying to catch up with blog. Missing the garden cos of feeding the littl’un so long. After screen curfew 20:00, later felt I needed to get something done, reduce tabs and mails, which felt good. I’m behind with “feeling good”, vicious circle.
  • Cheer: Appreciating the many little things.

Pic(k)s of the Day

= expanding happiness
Codlins and cream, what a cute name for the hairy, hoary, or small-flower(ed) willowherb. Reminds me of the duo Godley & Creme. Codlins means cooked apples:



And staying in front of the house I saw that the small grass there is flowering too, this is annual bluegrass / meadow grass - oh, I love bluegrass music, back to the country, back to the roots:

This compass plant / China lettuce up front is now budding…:

And back of house the broad-leaved is one “common” one good for insects I’ve wanted to encourage and see blossoming, but one the way there some fungus has turned the oldest leaves to beautiful colours for a few days. Good for skin (I remember that from kid times) and diarrhea, but oxalates and bitterness make it difficult to eat:

This might be a carpenter bee, rather than a fly, gotta try and get better pics, 8 weren’t enough:

Again honeybee on fiddleneck:


Again suneye/oxeye close-up:

Again marmalade fly on rough hawksbeard flowers:

One of my last mysteries was a very black feather, and I found one like this in a park nearby under where the jacks overnight, so I’m sure it was a black jack feather. :grin:
But these black round things (0.5mm granules) are a new black mystery I’ve probably wrongly associated with the devil’s coach horse beetle a week back…:
IMG_20240626_115336 wovon schwarze Körner vor Kelllereingang smaller

LDN: 3mg since Feb hasn't helped, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy, radius same. Side effects from reduction only 1 day and a little on others. Jun 19th 3mg. May 20th-Jun 18th 3.5mg, click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th :white_check_mark:.) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/4 (❌), music 15' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT imp., moving ➔ 80%/4 (✅), balance (✅), body fog (❌), jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87% ❌ and sleep 6h46 ❌ (Airing: 8h ✅. QCS: 8:00 ✅, 'PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', with ‚8h rest‘, 4h very slow, 4h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 6h46, 10' deep doze ✅, QCS at 8:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:35-7:36 30+20+25’, 10’ of that deep doze. Sum: h25+7h36-(x5’=)1h15 = 8h01-1h15 = 6h46.
23:35 after back, cocked up supps, A2 now
1:15 30’ A3 – risky cos amino acids, so drank quite a bit. Q6 turned out 30’.
2:05 20’ doze trying to go to sleep for 20’, but can’t, probably cos of screen time, so NSDR
3:26 25’ awake again, so QCS. Robin 3 short bursts, once every 5’!! And that’s despite street lights being off. 2 of 3 windows closed, plugs in. T-shirt, no trousers, 3 of 5 pairs of socks. Several bites, but only slightly troubling, with oils OK. NSDR again, but only short.
7:26, doze till -7:36 did wake up without getting up. Again GABA-problem, have to take more in the daytime and watch seizures and bladder pain. 1 window open, plugs in, 0 trousers, 0 long sleeves, 3 of 5 socks.

2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅ - several, but only slightly troubling, with oils OK. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Cardio successful - for report fatigue too: Cardio immediately gave me a report confirming severe fatigue for longer than a year, something needs to be done too. And she understood that talking is difficult, said yeah, we'll do it non-verbally. When she gave me a report saying 'severe fatigue syndrome', she asked if that were OK, I added: 'for more than a year', and she complied with that too.Other doc’s office asked me to phone. My wife suggests to tell them I can’t phone, to please mail an answer. Trying for higher disability from Apr 25th on. But (Jun 20th): Are the 7+ day-flares after appts. worth it?! Click for latest (Jun 22nd) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful. (Jun 10th appt.) with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio went well, short, short report adding fatigue syndrome.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Jun 20th (1) (+15d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 (Jun 20th 2024). Stress, histamine & less GABA. JUN 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

Last esophagus BLOCKS: Jun 25th & May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating if slightest pressure, 0224-06-22: better acid / gut.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, re-ordering silymarin Jun 24th. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Re-order silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids), see research Jun 22nd. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing, tinnitus & balance problems for 15h. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:

  • Slow. Late. Confused. Got something sold, looking for a big tripod and phone adapter, trying to catch up with blog. Missing the garden cos of feeding the littl’un so long.
  • I’m behind with “feeling good”.
  • Doc appt. was so early that I didn’t eat properly, 1st meal at 11:00, 2nd at 16:00, 3rd at 21:00.
  • Managed shop very slowly, guy at check-out of my shop wished me well, I said: yeah, not in good spot, he said: yeah, I know, that’s why I’m not talking to you, to not drain more energy. Great guy.
  • Screen curfew 20:00, but later felt I needed to get something done, reduce tabs and mails, which felt good: After feeding guinea pig altho listening to great music (which was fairly OK). Reduced tabs and mails in my work inbox from 31 to 7 and business inbox from 140 to 75. Which is good, but wrong time of the day.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) Nothing new.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Blackbirds, with the 4 juveniles, subsong, only short bursts of full song, like 19:44 :white_check_mark: Robins only short bursts, starting 3:30 :white_check_mark: Sparrows :white_check_mark: Blackcap :white_check_mark: Swifts 30x :white_check_mark:, Magpies :white_check_mark: Jacks :white_check_mark:, bathing 20x/d :white_check_mark:), Crow :white_check_mark: - not raven, Great Tits (nesting box) & BlueTits :white_check_mark:, Collared dove :white_check_mark:.
Latest / earliest robin song: …22:40/ <4:00…

(Regular cheer, song/calls/seen - Chaffinch sometimes and nearby :white_check_mark:, Chiffchaff sometimes and nearby :white_check_mark:, Wren song and family :white_check_mark:, Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June 0, song thrushes 0)
19:23 Nice squeak chattery sounds, maybe the juvenile blackbirds, made sure just to tape, not interrupt by looking. Unusually intense.
Much less blackbirds in the morning, not woken by one despite open window.
3:26 Robin 3 short bursts, once every 5’!! And that’s despite street lights being off.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats (:white_check_mark:) Bank vole(s) (:white_check_mark:). Insects: bees, flies, spiders, butterflies & bugs :white_check_mark:. Snails & slugs :white_check_mark:.

e) Human life: (TT imp… Skip-Bo :white_check_mark: Wife :white_check_mark: Art: my paintings :white_check_mark: Music listening (:white_check_mark:) Nice talks (:white_check_mark:) Kids? :white_check_mark: Friends? :white_check_mark: Family? :white_check_mark:)
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body (:x:). Brain (:x:).) On the verge of :x:. Thinking, feeling, but mono, lots is too much.

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-27 Thursday

Delay caused by rabbit holes like deciding on a camera+lens and lots of difficult insects.

Summary:

  • LDN Jun 20th- 1.5mg Jun 19th 3mg. May 20th-Jun 18th. 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy ’30%’ :white_check_mark:, partly usable = 13% (:x:), energy profile ‚very slow’ to ‚slow‘ :x:, TT 1:1 or 0:2 (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:, Jun 26th :x: - went well :white_check_mark:, but all too much, not recovered. 5 bites, but OK :white_check_mark:.
  • Last focal seizure: Jun 20th (+15d).
  • Sleep: Screen curfew ? (:white_check_mark:), late bed cos of: ? ‚:white_check_mark:‘. QCS at : ➔ ?3h deep sleep :white_check_mark:. Airing: ?6h :white_check_mark:.
  • Thoughts: -
  • Feelings: -
  • Cheer: Appreciating the many little things…

Pic(k)s of the Day

= expanding happiness

Coming up today, after many rabbit holes: rose, ‘Firefly’, oregano, clematis, hawksbeard, honey grass, yellow leaf as plants, and as insects: 3 bees, 2 hover flies, a different wasp, the lost larva rest, and unconventional, Crane fly, snowy fly, larvae…:
Plants:
Conventional beauty: a red rose and one of 10 last blossoms of Scotch broom (‘firefly’):



Up and coming buds: oregano and clematis – what that orange blossom is on the clematis photo I’ve got to have another look, may be a camera flaw for yellow hawksbeard:


And this would be the yellow blossoms of rough hawksbeard at the back of the garden: blossoming altho the plant is lying down – yup, that’s us!:
IMG_20240627_085622 Liegender Wiesen-Pippau smaller
Still finding it hard to cut off the first flowering, now seeding grasses, like my favourite woolley honey grass:


So this is just a yellowed leaf in the grass, but so what, it sure made me look!:

Only bird pics were blurry robin close-ups.

Insects – lots, now it’s sunny, and identified most, altho difficult and many rabbit holes here:
3 bees, all on the St. John’s Wort:
sweat bee 2x:



leafcutter bee:

and carder-bee 2x, how furry, cuddly, fluffy:


2 hover flies, also on the St. John’s Wort:
Baccha elongata hover fly (German “shadow” hover fly):

Cheilosia Scutellata hover fly (German “fungus arch” hover fly):

A wasp! on velvet grass – that is parasite of beneficial hover flies, so a sort of ‘pest’. I’m getting used to trying to distinguish different bee kinds, but also not to jump to conclusions what kind of insect something is:


At last I’ve found the rest of the larva of the Asian lady beetle I’d lost track of for a few days, morphing’s ended, so maybe the lady beetle I posted was that one:

Semingly not so nice, in my eyes unconventional beauty – an ex-crane fly(?), a snowy fly, larvae, some black fly, Tiger mosquito (larva)?, drain fly:
I think a crane fly - was…:

A snowy fly (tiny!, <1mm!) on celandine:

"Larvae, mosquitos or gnats:*

The app has no idea what this black fly is:

The app says this is an Asian tiger mosquito, I sure hope not:

A drain fly - aren’t they just so fluffy, when you look at them properly!! - but like everything else it was outdoors, on the veranda, near the dung water stuff. And I must say I do prefer that to indoors… - trying to get rid of the queasy feeling when I see them, cos they’re harmless, except in hospitals):

LDN: 3mg/3.5mg since Feb was no help, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy, radius same. click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th :white_check_mark:.) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th- 1.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/4 ❌, music 10' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 1:1 or 0:2 (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (✅), balance (✅), body fog (❌), jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87% ❌ and sleep 7h55, NSDR ✅ (Airing: 6h? ✅. QCS: 10:00? ✅, 'PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', with ‚8h rest‘, 4h very slow, 4h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 7h55, 1xNSDR ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-: x5’, 0 deep doze. Sum: h50+7h56-(17+10+4+20’=)51’ = 8h46-51’ = 7h55, NSDR.
23:10- No airing, no ear plugs.
2:43 17’ 1st, A3, dry throat, q6+identifying. Airing, ear plugs.
4:14 robin woke me up 10’ ago, street blackbird started.
5:37 4’
6:20-6:39 pang in whole GI, so more almond milk, dry throat. NSDR cos of thoughts.
7:56 up, NSDR worked, despite thoughts difficult.

2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Still trying a follow-up to the sleep lab mail. Trying for higher disability from Apr 25th on, cardio (Jun 26th) has helped immediately, let's see when allergist comes and when I'll be able to manage a GP appt. Click for latest (Jun 22nd) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, trying follow-up per mail. Jun 10th appt. with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Jun 20th (1) (+15d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 (Jun 20th 2024). Stress, histamine & less GABA. JUN 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

Last esophagus BLOCKS: Jun 25th & May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating if slightest pressure, 0224-06-22: better acid / gut.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, re-ordering silymarin Jun 24th. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Re-order silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids), see research Jun 22nd. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing, tinnitus & balance problems for 15h. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) New buds of oregano and clematis, see pics.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons (the littl’un around, begging regularly, e.g. 17:00-18:00 - but not visible), cooing only sometimes. :white_check_mark: Blackbirds (often together) the 4 juveniles, squeaking and squawking, parents there, males with subsong (before 18:16, quite a lot all day, half an hour, irritated by me moving, but carried on from another place when I calmed him by answering), and only short bursts/motifs of full song (17:51), and occasional warning calls :white_check_mark: Robins only short bursts, starting 3:30 and evening, only male here now (blurry pics) :white_check_mark: Sparrows :white_check_mark: Blackcap only at TT :white_check_mark: Swifts 30x :white_check_mark:, Magpies: also cute squeaks, e.g. before 18:16 :white_check_mark: Jacks - regularly one pleading for company, 17:51 2 chattering with one another (taped) :white_check_mark:, bathing 20x/d :white_check_mark:), Crow, not raven :white_check_mark:, Great Tits (nesting box) & BlueTits :white_check_mark:, Collared dove (loudest) :white_check_mark:.
Latest / earliest robin song: …22:30/ <3:30…

(Regular cheer, song/calls/seen - Chaffinch sometimes and nearby (e.g. TT) :white_check_mark:, Chiffchaff sometimes and nearby :white_check_mark:, Wren song and family, male singing at 18:19 after a few hours break :white_check_mark:, Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June 0 (back 29th), song thrushes 0)
c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats (:white_check_mark:) Bank vole(s) (:white_check_mark:). Insects: bees, flies, spiders, butterflies & bugs :white_check_mark:. Snails & slugs :white_check_mark:.
e) Human life: (TT? :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Art: my paintings :white_check_mark: Music listening (:white_check_mark:) Nice talks (:white_check_mark:) Kids? :white_check_mark: Friends? :white_check_mark: Family? :white_check_mark:)
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body (:x:). Brain (:x:).) Definitely, with jolts.

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-28 Friday

Summary:

  • LDN Jun 20th- 1.5mg :white_check_mark: for Energy ’30%’ :white_check_mark:, partly usable = 13% (:x:), energy profile ‚very slow’ to ‚slow‘ :x:, TT 2:0 (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:, Jun 26th :x: - went well :white_check_mark:, but all too much, not recovered. 5 bites, but OK :white_check_mark:.
  • Last focal seizure: Jun 20th (+15d). Prevented a block from quinoa/sweet potato by stopping and then drinking.
  • Sleep: Screen curfew 20:10, but later some more (:white_check_mark:), late bed cos of: guinea pigs, blog ‚:white_check_mark:‘. QCS at 10:00. Airing: 6h :white_check_mark:.
  • Thoughts: Good to get an independent schedule now my wife’s not home 2 days.
  • Feelings: -
  • Cheer: Appreciating the many little things… Brilliant bird bathing scene at 15:00. Decided upon a camera & lens and narrowed down supplier.

Pic(k)s of the Day

= expanding happiness

Many repetitions today… including one my wife thinks is brilliant … quite a few new ones… some sorta-funnies 10 plants, 3 animals, 1 bird, loads of insects…

Plants:
Red roses again, more groups at last:


Grasses standing out - “sparkling” came to my mind - in the sun again:

Evening primrose blossoms again:

New: Oleander blossoms budding:

I can now show the prickles well which give the China lettuce the name compass plant and its German name prickle lettuce:

St. John’s Wort again:

“Autumn joy” this is called in English, didn’t realise, then let’s see what comes of these buds coming up:

Suneye/oxeye flower shining again, I like the irregularity of this one:

Devil’s paintbrush (‘Orange-red hawkweed’) again, these blossoms will be gone so quick and such a group, before I thought it was only going to be a single one:

My hydrangea/hortensia I’ve now looked in to – no real flowers to be seen, with anthers or stamen! So … this (and my other 3 sorts) are absolutely useless, and even harmful for insects (cos attracting/distracting them), so I’ll not be cutting the ivy back from it:

Animals:
Putting out grass for the guinea pigs in my room into an upside down ‘house’ to try to keep the mess down – why not go directly into it?:

How come the sunflower seeds in the shed are getting less, and there are bits of plaster inside the plastic bag? So … the mice are going into it thru the hole I’ve left at the bottom, so they don’t put in a new hole, then up thru them, dragging the plaster in a futile attempt to “hide” them, and taking seeds to eat out of the bucket – where?


Ahhhhh, here!

Birds:
One of our woodpigeon pair was already in the feeding box, the other wanted to come together, that made a really nice view of the wings spread:

Insects
A cabbage white, a silly name in German and English, cos it doesn’t feed on cabbage at all… - this is my first try at doing better collages:




Cader-bee again:

Great banded furrow-bee on fiddleneck:

Great banded furrow-bee with something else on celandine:

This is the one I caught ‘by mistake’, only saw it on the photo above, and it’s not enough to be ID:
IMG_20240628_084512 Fliege oder Rüssler, NOT Langrüssliges Stockrosenspitzmäuschen auf Schöllkraut vor Haus snip
Had a leaf-cutting bee before, but my wife thinks this photo is brilliant, asked if I did it:

Probably a ‘narcissus hover fly’, Germans call the Merodon equestris, brilliantly evoking a red-tailed bumblebee, had to put it in, even tho blurry:

Couldn’t find out what this moth is yet:

A harvestman again, this one new to me:

Quiver spider is the nicer German name for cellar spider, even a dead spider glows in God’s sun:

LDN: 3mg/3.5mg since Feb was no help, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy, radius same. click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th :white_check_mark:.) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th- 1.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/4 ❌, music 10' ➔ 80%/4 (no nausea, but strain, depending on type of music) (❌), white lips 70-80% (❌), TT 2:0, cos talking less (moving 15%, talking 10%, counting 20%) (✅), moving ➔ 80%/3-4 (✅), balance (✅), body fog (❌), jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87% ❌ and sleep 7h53 ✅ (Airing: (?)8h ✅. QCS: (?)10:00 ✅, 'PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', with ‚8h rest‘, 4h very slow, 4h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 7h53, all deep ✅, QCS at ?10:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:45-7:58 4+7+4+4’, 0 deep doze. Sum: h+h-(x5’=)19’ =8h12-19’ = 7h53.
23:45-
1:50 1st, air, no plugs,
3:48 7’ 2nd cooing? Sky’s light, street lights still off. But 0 blackbirds or robins. Only 3 pairs of socks, cos downstairs, so bit cold, and long johns on, robin 3:51
5:42 1h50 tape, and probably nothing to here. Past nights nostrils stuffy. Tonight dry throat only partly. But cold from too few socks. In bed overheated.
6:56 4th GABA/break
-7:58

2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on, cardio (Jun 26th) has helped immediately, let's see when allergist comes and when I'll be able to manage a GP appt. Click for latest (Jun 22nd) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, trying follow-up per mail. Jun 10th appt. with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Prevented a block from quinoa/sweet potato by stopping as soon as I felt some pressure, waiting till it felt fairly free, and then drinking a few big gulps, not sure if that'll always help, but in this situation it was perfect. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Jun 20th (1) (+15d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 (Jun 20th 2024). Stress, histamine & less GABA. JUN 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

Last esophagus BLOCKS: Jun 25th & May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating if slightest pressure, 0224-06-22: better acid / gut.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, re-ordering silymarin Jun 24th. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Re-order silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids), see research Jun 22nd. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing, tinnitus & balance problems for 15h. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:

  • Annoying that something big I’d sold wasn’t taken. But only took today to get it out of my system.
  • cos wife not home guinea pigs took 1/2h longer I guess, but at least I’d been outdoors again and I’ve decided on the camera, that’ll please my wife.

Reasons to be cheerful:
a)-d) Plant, bird & animal life: Decided upon a camera & lens and narrowed down supplier.
a) Plants: (Newest blossoms) Oleander is new, loads of good pics.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Blackbirds, with the 4 juveniles, subsong, only short bursts of full song :white_check_mark: Robins only short bursts, starting 3:30 :white_check_mark: Sparrows :white_check_mark: Blackcap only at TT. Swifts 30x :white_check_mark:, Magpies :white_check_mark: Jacks :white_check_mark:, bathing 30x/d :white_check_mark:), Crow (compared and confirmed, but then different calls, even higher, that’s confusing again (22:05) :white_check_mark:, Great Tits (nesting box) & BlueTits :white_check_mark:, Collared dove :white_check_mark:.
Latest / earliest robin song: …22:30/ <4:00…

(Regular cheer, song/calls/seen - Chaffinch sometimes and nearby :white_check_mark:, Chiffchaff sometimes and nearby, at TT :white_check_mark:, Wren song and family :white_check_mark:, Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June 0, song thrushes 0)
Brilliant bird bathing scene at 15:00 - woodpigeon lying in a water bowl, juvenile blackbird touched, both got a fright, then back to water bowl and sun-bathing, blackbird bathing in aqua-sandarium…
c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank vole(s) :white_check_mark:. Insects: bees, flies, spiders, butterflies & bugs :white_check_mark:. Snails & slugs :white_check_mark:.
e) Human life: (TT :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Art: my paintings :white_check_mark: Music listening (:white_check_mark:) Nice talks (:white_check_mark:))
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body :x:. Brain :x:.) Very foggy, scraped my forearm from something. Things almost falling jolted me, I walk funny and I talk funny (ponderously).

Simplified: Grass up for the guinea pigs in the mornings that I’ve cut in the evenings, so it stays fresh outdoors, insects can move out of it and it doesn’t dry from the sun.

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-29 Saturday

Summary:

  • LDN Jun 20th- 1.5mg :white_check_mark: for Energy ’30%’ :white_check_mark:, partly usable = 13% (:x:), energy profile ‚very slow’ to ‚slow‘ :x:, TT 1:1 (:x:), jackknives (:x:), walking / cycling 15’ :x:.
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:, Jun 26th :x: - went well :white_check_mark:, but all too much, not recovered. 1 of 5 bites playing up (:x:).
  • Last focal seizure: Jun 20th (+15d).
  • Sleep :x: - late and thunderstorm: Screen curfew late :x:, late bed cos of: camera, blog, rain ‚:x:‘. QCS at 10:00 :white_check_mark: (skipped it yesterday, it turns out). Airing: 7h :white_check_mark:.
  • Air: Trying for fresh air all day out and in too, by keeping down times without.
  • Thoughts: Central sensitisation may actually play a part in my fibro, altho secondary: and I may have managed to decrease mine, decreasing each local pain and keeping them down manages to prevent old pains coming up.
  • Feelings: -
  • Cheer: Appreciating the many little things… 6! young blackbirds all at once! Water is a matter of life and death for my wildlife. I can now radically accept any death better than last year…:-/ Jay.

Pic(k)s of the Day

= expanding happiness

New: oregano blossoms increasing:


Devil’s paintbrush blossoms as long as they last:

Nice suneyes/oxeyes:

Great swift videos again, here some impressions as 2 collages:

Marmalade fly is nothing new, here on pelargonia blossoms tho (= wrongly “geranium”), but dissecting a video I found it “clapping hands”, very likely spreading pollen to where it’s sposed to be…:


…here it looks like a torpedo…:

… and here a good view of the wing pattern. I thought I’d caught the wing movement in flight, but checking that it was just a short stop before landing completely, maybe flight will be better possible with the speed of the proper camera:

LDN: 3mg/3.5mg since Feb was no help, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy, radius same. click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th :white_check_mark:.) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th- 1.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

Air

Fresh air not: 10:13-10:45, 14:52-16:00 feeding time…When it’s hot I need to do any housework early or late where we air anyway. 19:48 in for eating and washing hair. But after 5’ balcony. 20:47 in after trying to finish blog and ordering/buying camera. Then cooking in kitchen with balcony door open, and feeding guinea pigs in my room with window open. Feels much better, just gotta watch out that we don’t catch a cold, the piggies 'n me.

1) MAIN ISSUES: talking 10' ➔ 80%/4 = 14:32 met someone in shop, spoke 3’, but kept energy completely down, someone who used to drain me, but also now grown wiser, shuffled a lot, at check-out same nice guy, so didn’t have to talk, neighbour 1’ and someone came past and called me, but I didn’t follow up much, leaving such things. (❌), music, depending on how energetic 5-15' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 12:40 1:1 playing pretty precisely, maybe cos seizure earlier and sleeping better, managed to keep seizure-ishness down whilst playing. (moving 15%, talking 15%, counting 20%) (✅), moving 14:05 Cycling to shop 3’ was fine, but being in difficult ➔ 80%/4 (❌), balance (✅-❌), body fog (❌), jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87% ❌ and sleep 6h30 ❌ (Airing: 7h? ✅. QCS: 10:00? ✅ (but not yesterday, it turns out), 'PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', with ‚8h rest‘, 4h very slow, 4h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 6h30, not all deep ❌, QCS at ?10:00 QCS = very quick very cold shower (22 issues under control).

Sleep 0:35-8:07 x5’, 0 deep doze. Sum: 8h07-h35-(50+5+4+3’=)62’ = 7h32-62’ = 6h30.
0:35- sleep, late cos of camera blog rain.
1:45-2:35 q7, thunder sounding like a plane, tape at 2h28 missed claps
5:16 2nd GABA 1st brown, 2h36 audio of dawn chorus after rain, nice blackbird song
6:37 3rd/2nd 4’, wren & everyone singing, blackbirds no more.
7:35 3’
8:07 up, maybe cos of airing with light/sound

2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on, cardio (Jun 26th) has helped immediately, let's see when allergist comes and when I'll be able to manage a GP appt. Click for latest (Jun 22nd) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, trying follow-up per mail. Jun 10th appt. with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): 2 focal seizures: 10:55 slight, could talk, but right hand shaking hard, after inkling Friday evening too, from too little GABA Thursday? 17:57 (live, 30’’) 2nd seizure, cos I first fell for some supposed special offers the camera supplier I’d chosen, had difficulty saying the words right and left, mixing them up both ways about 10x, i.e. exchanging them whole (right for left) and half (light and reft), which is interesting as it shows how my mind with . Right finger moving. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

Last esophagus BLOCKS: Jun 25th & May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating if slightest pressure, 0224-06-22: better acid / gut.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, re-ordering silymarin Jun 24th. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Re-order silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids), see research Jun 22nd. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing, tinnitus & balance problems for 15h. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Central sensitisation may actually play a part in my fibro, altho secondary: and I may have managed to decrease mine, decreasing each local pain and keeping them down manages to prevent old pains coming up. So I should differentiate more when answering posts about it.

Lessons in self-care:

  • Attempt fresh air all day, keep down times without.
  • 10:15 didn’t cold shower Friday, about time.
  • 14:35 Neighbour asked if I’m OK, I said mostly not, but the rest I make myself nice.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Blackbirds, with the 4 juveniles (6 today, so I’m thinking it’s 2x3!), subsong, only short bursts of full song :white_check_mark: Robins only short bursts, starting 3:30 :white_check_mark: Sparrows :white_check_mark: Blackcap :white_check_mark: Swifts 30x :white_check_mark:, Magpies :white_check_mark: Jacks :white_check_mark:, bathing 20x/d :white_check_mark:), Raven/Crow :white_check_mark:, Great Tits (nesting box) & BlueTits :white_check_mark:, Collared dove :white_check_mark:.
Latest / earliest robin song: …22:30/ <3:40…

(Regular cheer, song/calls/seen - Chaffinch :white_check_mark:, Chiffchaff occasionally, and nearby :white_check_mark:, Wren song, family less :white_check_mark:, Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June, but back today, song thrushes 0)

  • 8:43 Jay and magpies. Robin near. Still occasional bursts of blackbirds song.
  • 9:57 Brilliant bird scene: Five young blackbirds in my view, 3 on shed, 1 chasing another on the balcony railings, 1 more round the corner.
  • Different crow/raven call… raven? Magpies
  • mainly woodpigeons in the feeding bowls, and squirrel.
  • 11:28 woodpecker’s back
  • 12:32 Managed to bury dead young blackbird I found on the pavement near our house with only compassion, no distress (dehydration plus window?). 14:32 Jay, magpie, head…? Really dead.
  • 13:07 Jay…
  • 14:37 interrupted blackbird bathing, but came back. Water is a matter of life and death.
  • 16:16 jack on chimney next door, rare that they come down from the roofes.
  • 17:03 chiffchaff, 2 male blackbirds bathing at the same time, no squabbling.
  • 19:09 wren
  • 19:15 GreatTits plus young blackbird bathing in aqua-sandarium.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats 0. Bank vole(s) (:white_check_mark:). Insects: bees, flies, spiders, butterflies & bugs :white_check_mark:. Snails yes, but slugs less, cos of heat :white_check_mark:.

  • 13:08 orange butterfly, too fast for me.
  • 19:09 squirrel at water bowl!
  • 19:09 a wasp, and a 2nd on beech leaves, seemed a pair, flew around each other, the first I managed to get a pic of.

e) Human life: (TT laughter :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Art: my paintings :white_check_mark: Music listening (:white_check_mark:) Nice talks (:white_check_mark:))
f) Environment: (outdoors/fresh air :white_check_mark:.) Increasing by opening windows more when I have to be indoors.
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body :x:. Brain :x:.)

Simplified:

  • Sleeping 8h makes quite a bit of difference
  • Just going thru normal routine alone (wife away) helps find my own schedule better (but then why did it get so late today… :slightly_frowning_face: * ).
  • Laptop whilst feeding only after I’ve eaten myself, and with open window.
Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-06-30 Sunday

Summary:

  • LDN Jun 20th- 1.5mg :white_check_mark: for Energy ’30%’ :white_check_mark:, partly usable = 13% (:x:), energy profile ‚very slow’ to ‚slow‘ :x:, TT 1:1, probably cos people were talking next to us. (:x:), jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:, Jun 26th :x: - went well :white_check_mark:, but all too much, not recovered. 1 of 5 bites playing up (:x:).
  • Last focal seizure: Last seizures Jun 29th (2) (+9d :white_check_mark:). Almost 1 today 21:49.
  • Sleep: Screen curfew late :x:, late bed cos of: Insect identifying ‚:x:‘. QCS at 10:00 :white_check_mark:. Airing: 7h :white_check_mark:.
  • Thoughts: -
  • Feelings: -
  • Cheer: Appreciating the many little things… Taped my Blackie for at least 8’ at 4:40. Getting guinea pig to put on weight, pretty stably!

Pic(k)s of the Day

= expanding happiness

Nothing really “new” today cos the rain is stopping everything (except me):
Red roses shining from the raindrops:


The oleander blossoms are suffering from the rain:

Even “bent grass” (German: ‘red bouquet grass’) has its beauty:

The evening primroses (with the oleander blossom left) are filling up the spaces beautifully:

The other day I was wondering if that orange bud was a camera glitch, turns out the rough hawksbeard usually has orange buds before they grow yellow. Reminds me of rhododendron blossoms always being a deeper colour when budding, like pink becomes white, I wonder why:

Have to tout devil’s paintbrush once again, now lying down in the grass… cos…:

…the rain snapped the stalk:

LDN: 3mg/3.5mg since Feb was no help, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy, radius same. click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th :white_check_mark:.) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th- 1.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: Air: Newly realising I can air more indoors, I didn’t go out whilst procrastinating with cooking, so not ideal yet, talking 20' ➔ 80%/4 (❌), music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 17:03 1:1, 1st easy, 2nd started losing, guess cos 2...-6 people were talking at the table next to ours, but at least managed to catch up to 15:21 from 3:18 or so (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (✅), balance (✅), body fog (❌), jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87% ❌ and sleep 8h13 ✅ (Airing: 7h ✅. QCS: 10:00 ✅, 'PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', with ‚8h rest‘, 4h very slow, 4h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 8h13, all deep ✅, QCS at 10:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:25-7:42 3+3+5+3’, 0 deep doze. Sum: h35+7h42-(x5’=)14’ = 8h17-14’ = 8h13.
23:25 after insect identifying
1:47 3’ dry throat, 1st GABA/brown, very deep sleep, raining, airing, plugs out
3:32 3’ 2nd, raining, air, no plugs
4:31 5’ several robins & 1-2 blackbird/s, not one known motif. Rain may be the reason to sing once more. Closing 2 of 3 windows, maybe plugs. I’ll tape dawn chorus and thunder
5:50 3’ tape was 70’, didn’t know there was anything, but actually it was my Blackie singing 4h41-4h49, praps it was him before too. Ear plugs out and windows open.
-7:42 cos council workers cleaning the street

2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅. Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: Trying for higher disability from Apr 25th on, cardio (Jun 26th) has helped immediately, let's see when allergist comes and when I'll be able to manage a GP appt. Click for latest (Jun 22nd) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, trying follow-up per mail. Jun 10th appt. with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): 21:49 almost seizure when disappointed by guinea pig not wanting to eat more - unnecessarily. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Jun 29th (2) (+9d) (✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 (Jun 29th
2024). Stress, histamine & less GABA. JUN 29th (9d) 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

Last esophagus BLOCKS: Jun 25th & May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating if slightest pressure, 0224-06-22: better acid / gut.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, re-ordering silymarin Jun 24th. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Re-order silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids), see research Jun 22nd. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing, tinnitus & balance problems for 15h. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:
Getting guinea pig to put on weight is very hard work, I need to remember that.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

  • 9:27 the snowy fly is under the leaves of the celandines as expected - good for bird food or other insects.

b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Blackbirds, with the 4 juveniles, subsong, only short bursts of full song, 18:16 Blackbird #4 with his new motif :white_check_mark: Robins only short bursts, starting 3:30 :white_check_mark: Sparrows :white_check_mark: Blackcap :white_check_mark: Swifts 30x, less after the rains :white_check_mark:, Magpies :white_check_mark: Jacks :white_check_mark:, bathing 10x/d :white_check_mark:), Raven/Crow :white_check_mark:, Great Tits (nesting box) & BlueTits :white_check_mark:, Collared dove :white_check_mark:.
Latest / earliest robin song: …22:30/ <4:00…- 4:31 5’ several robins & 1-2 blackbird/s, not one known motif. Rain may be the reason to sing once more. Taping dawn chorus and thunder 70’ had my Blackie on it singing 4h41-4h49, praps it was him before too!

(Regular cheer, song/calls/seen - Chaffinch - rain call all morning, and 18:32! :white_check_mark:, Chiffchaff 18:30 :white_check_mark:, Wren song, sometimes family :white_check_mark:, Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June, but back sometimes, 16:37 at TT too :white_check_mark:, song thrushes 0)

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank vole(s) :white_check_mark:. Insects: bees, flies, spiders, butterflies & bugs :white_check_mark:. Snails & slugs :white_check_mark:.

  • Guinea pig putting on weight, pretty stably!

e) Human life: (TT laughter :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Art: my paintings :white_check_mark: Music listening (:white_check_mark:) Nice talks (:white_check_mark:)

  • 22:14 suddenly +389 views in 48h, must be a search engine glitch, but still nice.

f) Environment: (outdoors/fresh air :white_check_mark:.)

  • 12+6 buckets of water, getting normal, after exciting thunderstorm tonight with 2 really loud thunderclaps, but I could only tape about 6 rolls.

g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body (:x:). Brain (:x:).)

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-07-01 Monday

Summary:

  • LDN Jun 20th- 1.5mg :white_check_mark: for Energy ’30%’ :white_check_mark:, partly usable = 13% (:x:), energy profile ‚very slow’ to ‚slow‘ :x:, TT n/a, jackknives (:white_check_mark:), walking / cycling 15’ (:x:). Standing more, but it does hurt, and pushing thru pain decreases power.
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:, Jun 26th :x: - went well :white_check_mark:, but all too much, not recovered. 1 bite pretty big now (:x:).
  • Last focal seizure: Jun 29th (2) (+9d :white_check_mark:).
  • Sleep: Screen curfew fairly early, then only a bit later (:white_check_mark:), late bed cos of: ':x:‘. QCS at 10:00 :white_check_mark:. Airing: 7h :white_check_mark:.
  • Fresh air: Getting used to opening the window in almost every room I’m in, or going on the balcony. For that it’s best to do the guinea pigs early on hot days. Aired a lot today.
  • Environment: Didn’t watch out enough now weather’s got colder again, but I counter-acted by overheating after freezing a bit.
  • Thoughts: -
  • Feelings: -
  • Cheer: Appreciating the many little things… and unravelling mysteries I’m curious about, the camera will help me… like if it’s really the squirrel ‘scratching’ in the cornel cherry all morning most mornings. Robin near, young blackbird less shy. Lakes nice, if short: 3-4 song thrushes! Heron near! further details below. Guinea pig interplay getting more and more sophisticated. And gained 80-90g today!
  • Self-care Standing more for feeding and typing hurts, but better than it used to be. Drinking more in between, see if sleep is still OK. Guinea pig feeding is 3x 1 - 1.5h. Nighmare-ish dream.
  • Various Simplfications for wi-fi, guinea pig and pic collages here.
  • Foggy: Forgot to get the washing out of the rain altho standing next to it with an umbrella.

Pic(k)s of the Day

= expanding happiness
and making things spectacular:
Total pic numbers I have to identify and choose from have gone down to 120 pics today, yesterday only 47, not 200 like when the sun was shining. So I can try to catch up better.
Couldn’t manage to get the table on this platform work for pics, but adobe express is good for the time being (edit Thursday whilst writing down: after uploading pics here, I’ve now found a grid function, but I’m not sure how good for my purposes).

Annual honesty is actually biannual and this year was its prime, with nice blossoms, and now at last the seed capsules that give it the German name ‘silver leaf’ - non-native, but quite good for bees, considering. I was thinking if it’s better to cut off the leaves the slugs had decimated, but for these seeds every bit of green helps, I also think if I leave the rests they can just finish them off anyway:


This was/is all on the balcony…
My beloved cornflowers increasing to 6 blossoms whilst hiding in an ugly part of the balcony, need to remove that bucket:

The ‘gold lacquer’ (wallflower) on the balcony has nice fresh seeds now, hope it can make more of itself next year, like those on the ground:

Hmm, yellow woodsorrel this is identified as, and last year none of the oxalis went yellow, so the name is fitting, even tho the first 2 pics of leaves turned yellow couldn’t be identified, I thought those leaves are now wilted, now I’m not sure:*



Hmm, why is this cricket called/identified as Southern (oak) bush-cricket? Cos it’s a new one emigrating from the Mediterranean - using cars on motorways! But has my laptop identified right, or is it just the normal (oak) bush cricket? Its wings would be short stumps, so it can’t fly (but it can ride cars, how useful…). It is slowly taking over from the normal bush cricket. And it protects chestnuts by feeding on the larvae of the horse-chestnut leaf miner (moth). We do have quite a few chestnuts around. The name “oak” is misleading, many trees will do:


And back down in the garden:
We planted blueberries in our garden 2 years ago, last year there was nothing, but this is the first blueberry (bilberry, huckleberry):

And above the blueberries the honeysuckle is budding, last year I overlooked its leaves being infested, this time I put coffee dregs and guinea pig poo on it to strengthen it and watched out to take off all leaves in time:

On our short cycle-walk, my wife pointed out this sea of white bush roses at our street corner:

and at our nearest sea, OK pond, the crisped/curled thistles have grown beautifully, I hope I get some in the garden too:

One of the problem of these invasive and very proliferous slugs is that they look so pretty (I read that too, it’s not just me), like this one with its black antennae offsetting the brown, a bit darker on this one. Despite all the rain there aren’t as many around as a month or two ago, and most plants have survived them. Most important thing I’ve read is not to bring them anywhere else alive: either kill 'em or leave 'em be in our own space, I’ve decided for the latter:

LDN: 3mg/3.5mg since Feb was no help, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy, radius same. click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th :white_check_mark:.) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th- 1.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' (e.g. neighbour) ➔ 80%/4 (❌), music 5-20', depending (slow and emotional OK) ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT n/a (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/4-5 - the lakes were hardly worth it, hurting from the cold, and we started out too late, at 19:40 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (✅) standing more for feeding and typing hurts (30' ➔ 80%/4-5), but better than it used to be (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87% ❌ and sleep h ✅ (Airing: 8h? ✅. QCS: : ✅, 'PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', with ‚8h rest‘, 4h very slow, 4h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 8h34, all except 15' deep ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:00-7:55 3+3+5+7+3=21’, of that 15’ deep doze. Sum: 1h+7h55-(x5’=)21’ = 8h55-21’ = 8h34
23:00-
23:48 1st
0:35 2nd, bite playing up, bit of unrest, try again.
2:52 very sore throat, so calendula and umckaloabo.
4:29 3rd GABA, sleeping quite well, throat a bit better, but another treatment.
6:30 7’ 4th so a blackbird was singing, a new one I think, but didn’t tape (by mistake). A common motif was di-djü-diii, not totally new. Longer phrases.
Great Tits with an octave jump call, a bit like the alarm call, but not alarmed.
Didn’t scare or disturb me much while sleeping, but nightmare-type I was lying on my back on top of an enormous 100m high pillar, not able to move, a kid was blackmailing me to play a game which was bad for them, and I was saying no, but to do so I had to keep lying on my back up there. No idea what it’s referring to, what I feel blackmailed my, praps my wife has an idea.
7:41 Don’t forget Cardio results, pulse down to 40 and palpitations
-7:55 Deep dozed another 15’ minutes, but better get up now.

2) Watching TRIGGERS, esp. of exhaustibility. 1 bite has got pretty big, 10cm wide, 0.5cm high, quite a lump, altho the red inflammation is only 1cm diameter (❌). Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Jun 29th- 1 of 5 bites playing up (❌). Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.

(3) DOCS: 7:41 Don't forget cardio results, and if possible add/mention that pulse had been down to 40 with palpitations. Trying for higher disability from Apr 25th on, cardio (Jun 26th) has helped immediately, let's see when allergist comes and when I'll be able to manage a GP appt. Click for latest (Jun 22nd) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, trying follow-up per mail. Jun 10th appt. with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Drinking more in between, see if sleep is still OK. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun
20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

Last esophagus BLOCKS: Jun 25th & May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating if slightest pressure, 0224-06-22: better acid / gut.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, re-ordering silymarin Jun 24th. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Re-order silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids), see research Jun 22nd. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing, tinnitus & balance problems for 15h. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:

  • Cos everything got late from the late cycle-walk to the lakes I made sure I did the guinea pigs as soon as we got back home.
  • Guinea pig feeding is 3x 1 - 1.5h. My wife says I should only do 0.5h, but if he’s still hungry, I can’t stop.
  • Often annoyed when I want to go to the bathroom before bed and my wife’s in there, but that’s my fault, I need to just brush my teeth etc. beforehand.
  • 6:30 It didn’t scare or disturb me while sleeping, but nightmare-type I dreamt I was lying on my back on top of an enormous 100m high pillar, not able to move, a kid was blackmailing me to play a game which was bad for them, and I was saying no, but to do so I had to keep lying on my back up there. No idea what it’s referring to, what I feel blackmailed by, praps my wife has an idea.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) -
b) Birds:
It’s got very quiet now!
(Every day cheer, song/calls/seen: Woodpigeons - the littl’un squeak-begging, still haven’t seen yet :white_check_mark: Blackbirds subsong, only short bursts of full song, first time I hear at 11:36 2x5 notes, the juveniles are tolerating my presence and looking at them better, sometimes flutter by, not quite as nervously :white_check_mark: Robins shorter bursts, or subsinging, visited me several times :white_check_mark: Sparrows (:white_check_mark:) Blackcap more nearby than here :white_check_mark:. Swifts much less cos of rain (:white_check_mark:), Magpies :white_check_mark: Jacks :white_check_mark:, bathing 6x/d :white_check_mark:), Crow :white_check_mark:, Great Tits (nesting box) & BlueTits :white_check_mark:, Collared dove :white_check_mark:.
Latest / earliest robin song: …22:40/ <4:00…

(Regular cheer, song/calls/seen - Chaffinch sometimes and nearby :white_check_mark:, Chiffchaff sometimes and nearby :white_check_mark:, Wren song and family :white_check_mark:, Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June, back today at/after 18:10, song thrushes 0)

  • Blackcap at TT, to make up for my mate not being there.
  • Call a bit like a great woodpecker, taped but inaudible, but later I confirmed it was one.
  • Nearer lake: Song thrush, moorhen still on nest, but moving a lot, so praps with chicks under her, mother duck with 4+ ducklings around. May have seemed bad that everything was cut down, but now some parts look better, cos lots of smaller bushes have developed. Blackbird singing 20:05. Saw male + female chaffinch, sang later, like chiffchaff. Great woodpecker visible. Ducks different: from the hybrids cos of white bits, but also moving slower. Nice thistle. 3-4 song thrushes on the way to the farther lake! Goslings almost full size, but still squeaking around like babies. New small ducklings here too. A heron flew up when we came close to where the goslings usually are.
  • 6:30 A blackbird was singing, a new one I think, but didn’t tape (by mistake). A common motif was di-djü-diii, not totally new. Longer phrases than usual at the moment.
  • 6:30 Great Tit with an octave jump call, a bit like the alarm call, but not alarmed.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel eating the sunflower seeds via the Boston ivy :white_check_mark:)
Bats :white_check_mark: Bank vole(s) :white_check_mark:. Insects: bees, flies, spiders, butterflies & bugs :white_check_mark:. Snails & slugs :white_check_mark:.

  • Interplay between guinea pig and me is getting more and more sophisticated. I’m learning to give him slack in between, and we’re learning how he can best get my attention for the next tidbit when I’m distracted like with laptop: if I’m sitting on the floor in my room, he has to climb on my leg; if I’m feeding into the cage, he has to come out of a hut and if that’s not enough squeak a little bit.
  • When I prepared and slowly closed him in instead of running away he rumbled, as if he were happy I was going to take him slowly!
  • Gained 80-90g!

e) Human life: (TT n/a :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Art: my paintings :white_check_mark: Music listening (:white_check_mark:) Nice talks (:white_check_mark:))
f) Environment: (outdoors/fresh air :white_check_mark:.) No need for more rain, buckets are always full, thank ye ;o).
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body (:x:). Brain (:x:).)
Big foggy: My wife had put washing out next to me and asked me to keep my eyes on it in case it rains, but I was too engrossed and put an umbrella over me, but completely forgot the clothes.

Simplified:
My new place outdoors for better wi-fi, the rubbish bins (cleaned tops), is OK for watching birds bathing too, cos I’m more hidden from view by wall, post and the small beech I’m letting grow there (with the side effect of it hiding the rubbish bins). For rain I can put an umbrella (if not enough, a sunshade) over me, cos it’s next to a wall that it can rest on. Main problems are that I have to stand: good for my back, but not for Ache. And the neighbours sit fairly close. But both is better than having to go indoors for better wi-fi. For standing I need to switch as soon as I don’t use the wi-fi.
I’m also standing more whilst feeding the guinea pig in the cage for 1st and 2nd meal, but for short laptop times once I’ve finished eating myself I can alternate with kneeling on a cushion with straight back.
Adobe express for collages for the photos does consume even more time, but it’s slicker and better to compare photos when birds & insects are flying.

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-07-02 Tuesday

Summary:

  • LDN Jun 20th- 1.5mg :white_check_mark: for Energy ’30%’ :white_check_mark:, partly usable = 13% (:x:), energy profile ‚very slow’ to ‚slow‘ :x:, TT TT 0:2, later 2:0, hurting (:x:), jackknives (:white_check_mark:), walking / cycling 20’ (:x:).
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:, Jun 26th :x: - went well :white_check_mark:, but all too much, not recovered. Bite still 10cm x 0.5cm (:x:).
  • Last focal seizure: Jun 29th (2) (+9d :white_check_mark:).
  • Sleep: Screen curfew 20:20, but some again later (:x:), late bed cos of: blog, pigs, forums ':x:‘. QCS at 10:00 :white_check_mark:.
  • Fresh air: 20h :white_check_mark:.
  • Thoughts: -
  • Feelings: -
  • Cheer: Appreciating the many little things… Blackbird singing at TT, song thrush after. Goldfinch next to my shop in the evening.
    Foggies: Quite a few.

Pic(k)s of the Day

= expanding happiness
I’ve seen I can use a grid function here after I’ve uploaded pics, so maybe I don’t need to make a collage anymore or in every case!

Plants:
Today I’m starting with the unspectacular plants and ending on conventional beauty.
Again something that looks like nothing, except a very characteristic leaf attachment. But it’s a new plant in my garden, important for bio-diversity and a good one for insects. Bistort or snakeroot. Need to care for it:


Neighbour’s hollyhock blossoms I’d like on my side too…:
![IMG_20240702_083016 Stockmalven Stockrosen smaller|690x388 (upload://wGl0lUn0ixfHGEk2RWN2FkQSHFQ.jpeg)

…and they gave me seeds last year, didn’t come up last, and this year these 2 tiny leaves were now identified as being some… well, don’t think they’ll make it this year, but I won’t give up hope. (Despite seeming very native to us however, the big blossoms are telling: non-native, so it doesn’t matter, most of my plants up front are all native):

Also in front of the house, I’d taken and put down pieces of bark from trees around the corner. The left one with lichen looks a bit like mould, so I was ashamed and turned it over to the brown inside. A few weeks ago I decided to provoke and challenge by showing the contrast:


Up on our balcony…:
*The beautiful fungus “many-zoned bracket” (or “many-coloured polypore”, in German ‘butterfly fungus’) on the balcony railings keeps reminding me of one of my first identifying adventures, cos there were loads on the lilac tree trunk last year.


Not sure when I last had a proper look at the pelargonium blossoms, and as often I like buds, as well as the look and smell of the leaves:

Insects
My laptop says this might just be a house fly, but also Cheilosia, in German a type of ‘arch hover fly’, and that fits better to my eye, plus I don’t think I’ve got one yet, this is on the wall/false barley:


And talking about grains, we sometimes have brown bugs suggesting to us we might need to clean up somewhere, and sure enough this cute little bug(ger) is a biscuit/bread beetle:

Animals
After our little guinea pig charges thru the straw protection he builds himself, he looks like a crub cake:


Squirrel in the feeding box again:

Birds

So in the morning the young woodpigeon was on the shed and then together with parent on the lowest mini-‘balcony’, first time directly here again, first time I see begging outside the nest (altho been hearing it for 2 weeks now) and first time I’ve been able to get shots:

But in the afternoon whilst I was feeding the guinea pigs, littl’un tried to fly into the upper window for 20-30’', only stopped and flew down when I closed the lower one, and flew away after I opened again:

Human
Some joker put a sun around a no parking sign, made me laugh, and looks pretty good.

LDN: 3mg/3.5mg since Feb was no help, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy, radius same. click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th :white_check_mark:.) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th- 1.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/4 (❌), music 5-30', depending ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 17:29 TT 0:2, later 2:0, hurting tho. Someone from work that came by asked if I’m OK, I said yeah, just listening. Untrue: I was also hurting from TT so in a relief position. (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (✅), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87% ❌ and sleep 7h17: Council workers cutting & blowing woke me up, another reason to get to bed earlier ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', with '8h rest‘, 4h very slow, 4h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 7h17, all deep ✅, QCS at 10:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:10-7:33 3+28+3’+15’+5’ x5’, 15’ deep doze. Sum: h50+7h33-(x5’=)54’ = 8h23-54’ = 7h17.
(Monday night: 7:56 bit of stuffy nostrils, frontal headache, overheated cos of longsleeve on)
Screen curfew 20:20, then a bit whilst feeding, finished Saturday’s entry and forums after that…
23:10- after back
0:43 1st, no apigenin
0:59-1:26 28’ q6 cos of unrest
2:31 bite getting smaller
3:23 ? 15’? bed with phone in case NSDR nec - wasn’t…
6:32 4th 5’
7:21 closed windows cos of council workers cutting rose beds, then 7:31 blowing leaves. 7:33 something’s hurting on back of foot.
15’ of that deep dozing

2) Watching TRIGGERS, esp. of exhaustibility. Jun 29th- 1 of 5 bites playing up: Bite still 10cm radius 0.5cm high. (❌) Praps I’ve had less bites this year so far cos of more rain and not cos of changed body? ✅. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.
(Jun 26th) Did go well :white_check_mark:, but all too much, not recovered beforehand, so stays :x:.
(Jun 29th-) 1 of 5 bites playing up (:x:).

(3) DOCS: Trying for higher disability from Apr 25th on, cardio (Jun 26th) has helped immediately, let's see when allergist comes and when I'll be able to manage a GP appt. Click for latest (Jun 22nd) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, trying follow-up per mail. Jun 10th appt. with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun
20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

Last esophagus BLOCKS: Jun 25th & May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating if slightest pressure, 0224-06-22: better acid / gut.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, re-ordering silymarin Jun 24th. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Re-order silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids), see research Jun 22nd. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing, tinnitus & balance problems for 15h. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Not feeling too well, but let’s keep it at 90% today (tomorrow/Wednesday worse for a day, then from the evening on better than today.)

Lessons in self-care:
14:37 something fell out of my pocket, startled. My wife asks why I startle lately, saying it’s normal for things to fall down. Thing is I’m losing control, things are falling in a different way, I’m not used to it, sometimes I can just let it go, but sometimes I do startle. But I don’t startle at startling, it’s just that, nothing more.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) See pics.
b) Birds:
Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Blackbird family less shy, some subsong and only short bursts of full song :white_check_mark: Robins here only short bursts :white_check_mark: Sparrows (:white_check_mark:) Blackcap singing less here, same at TT (:white_check_mark:) Swifts 4x, those not breeding are off cos of the rain period :white_check_mark:, Magpies :white_check_mark: Jacks less now :white_check_mark:, bathing 10x/d cos of rain :white_check_mark:, Crow :white_check_mark:, Great Tits now hatched a few days ago, lost track of when exactly & BlueTits :white_check_mark:, Collared dove :white_check_mark:.
Latest / earliest robin song: …22:40/ <4:00…

(Regular cheer, song/calls/seen - Chaffinch :white_check_mark:, Chiffchaff :white_check_mark:, Wren song and family here less (:white_check_mark:), Great Woodpeckers left mid-June but back around 30th, all song thrushes singing a lot again nearby :white_check_mark:), Dunnocks 0, Nuthatches 0.

  • 12:00 chaffinch all morning singing, altho it’s raining. Then 12:56 rain call all the time.
  • 12:53 jay call? Or jack?
  • 13:35 young blackbird came past me near on the veranda, bedraggled from the rain, only nervous when I started talking.
  • 15:23 young woodpigeon thankfully didn’t hurt himself while trying to fly into the upper window of the guinea pig room for 30 seconds. (No images came up, only slight memory, of the young woodpigeon last year breaking a wing (and then losing life after a few days) by flying into the cellar door.) When I closed the window it made him fly down; when I opened again, he flew away, parent was on the shed and flew away too.
  • 15:54 taping woodpigeon there were baby and juvenile sounds in the background.
  • 16:38 blackbird singing in the background and blackcap in the foreground at TT, taped while playing, so dreadful recording.
  • 17:14 song thrush back on the way home from TT. Taped. Now hardly blackbird song to listen to I concentrated on this song, which I’d deprecated a bit. Realised the repetitions have quite a variety and progression, then there’s periods of song without repetitions.
  • 17:27 GreatTit babies down the road from the song thrush, chiffchaff, chaffinch.
  • 20:50 I thought a dunnock next to my shop, but 21:08 I taped a bird a bit further that sounded like a cross between wren and blackcap identified as a goldfinch, so it might have been that.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel in cornel cherry and feeding bowl :white_check_mark:)
Bats (:white_check_mark:) Bank vole(s) (:white_check_mark:). Insects: bees, flies, spiders, butterflies & bugs :white_check_mark:. Snails & slugs :white_check_mark:.
17:39 squirrel in sunflower seeds again, the only one other than woodpigeons. The blackbirds are never in there any more, nor the parent of the woodpigeon baby. Cos I’m not sure if they’re OK for the GreatTits brood I’m not putting them out regularly.
Cabbage white(s) several times a day.

e) Human life: (TT laughter 2x :white_check_mark::white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Art: my paintings :white_check_mark: Music listening (:white_check_mark:) Nice talks (:white_check_mark:))
f) Environment: (outdoors/fresh air :white_check_mark:.) 21h :white_check_mark:.
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body (:x:). Brain (:x:).)
14:33 after unloading my sweeper after sweeping my carpet, I knocked over some bleaching powder on it, so had to then clean that up again.
14:34 before that knocked something down in the kitchen.
17:50 just stumbled backwards over nothing.

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

2024-07-03 Wednesday

Summary:

  • LDN Jun 20th- 1.5mg :white_check_mark: for Energy ’30%’ :white_check_mark:, partly usable = 13% (:x:), energy profile 'very slow’ to 'slow‘ :x:, TT TT 1:1, improving (:x:), jackknives (:white_check_mark:), walking / cycling 20’ (:x:).
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:, Jun 26th :x: - went well :white_check_mark:, but all too much, not recovered. 1 of 5 bites playing up (:x:).
  • Last focal seizure: Jun 29th (2) (+9d :white_check_mark:).
  • Sleep: Screen curfew OK (:x:), earlier bed :white_check_mark:. QCS at 10:00 :white_check_mark:.
  • Fresh air: 20h :white_check_mark:.
  • Thoughts: Thoughts: Lots of self-care thoughts, necessary, see below! Pushing thru pain and fatigue decreases effectiveness! My life is tough, so there! Prepare pills better!
  • Feelings: Feelings: depressed. Too much. Had to write back to bosses about retirement by today. Looking at a form or theirs overwhelmed me, one I should have long filled, it was the amount of data I need to look up and copy for them. At least I asked for an @ddress instead of a phone number that I can ask for help. Next big thing was that I’d ordered a camera and lens which weren’t compatible, after putting my ‘last’ energy into ordering it at the weekend. Not at all sure what to do next, feel like just sending it all back and leaving it at that. But probably wiser to exchange the camera. Triggers for the depressiveness will be not sleeping enough, bed too late, combination of feeding, wife, blog and camera decision. 17:12 Also trying to back up my new old laptop didn’t work, supposedly not enough room on the drive, which isn’t true. So bottom line is I need to push away all these apparent reasons for the feeling of depressiveness, talk a bit about it, and start getting happy again first. Then tackle all the stuff bit by bit. Also not being able to play TT I thought, better when I could. Made me forget what I could eat first, so I ate muesli for 2nd meal, instead of like I remembered for the 3rd meal using beans.
    Energy coming back in the 2nd TT game at around 18:30, which is strange, but nice, hope not fake (it wasn’t). Maybe from re-starting 5g creatine with the 2nd meal? Or overcoming the insect bite as an additional strain? Or telling my wife about everything that happened, even tho she didn’t seem to take me seriously – “we’ll find a solution”. And/or telling my TT-mate I was glad to play to counteract my depressiveness. Encouraging myself to go to bed early, before 23:00, so tomorrow will be a good day.
  • Cheer: Appreciating the many little things… Exciting: GreatTits have flown! Strangely black spots on 1-2, same as on BlueTits - hope that’s OK. :face_with_monocle: Taped Blackie in dawn chorus (5’ of a 2h recording…).

Pic(k)s of the Day

= expanding happiness

My laptop thinks it can distinguish between a German wasp…:
VID_20240703_164504 19'' Deutsche Wespe Vespula germanica 0'19'' 2
…and a “common” or English wasp… - well, I’d need a better pic of this one to decide if it’s right:
VID_20240703_165010 Gemeine Wespe Vespula vulgaris zB 0'13'' 2

Got a better pic of robin near me today. Robin girlie I saw the other day, too, surprisingly, with her white stripe (now only on right wing, not both) and black spot under left eye, but this then will be her man:

And at last I’ve got closer pics of the new/fresh black spotted GreatTit (worrying?):


VID_20240703_173024 20'' Kohlmeise snip 1

LDN: 3mg/3.5mg since Feb was no help, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy, radius same. click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep :white_check_mark:, possibly from Dec on drinking only 2L/d :white_check_mark: which is helping sleep, and possibly reducing histamine and/or tannin from walnuts :white_check_mark:, but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense :x:. Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th :white_check_mark:.) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th- 1.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: Airing: Did air during feeding, but not before and after in my room, may be 21h again ✅, talking 10' ➔ 80%/4 (❌), music 5-30', depending ➔ 80%/3-4 (no nausea, strain less) - 21:40 when my wife went out, a comforting music track came up in my mind and I listened to that and then old tracks of mine, music for 1h!! without pain, thought mine were fairly good, both extremely unusual. Caught up with the blog a little. (❌), white lips 70-80% (❌), TT TT 1:1, managed to catch up in the 2nd game, and as if my energy were coming back (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-5 - hard to hold the camera (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87%, worse till 18:00 ❌, better during TT, 22:44 still energy, overdrive? ✅, feels good, and sleep 8h40 ✅, still nimble in the morning ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', with ‚8h rest‘, 4h very slow, 4h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 8h40, all deep ✅, QCS at 10:00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:50-7:44 3+3+3+5’, 0 deep doze. Sum: 1h10+7h44-(x5’=)14’ = 8h54-14’ = 8h40.
22:50 after back
0:12 3’ 1st
2:51 2nd
4:11 3’ 3rd robins, 0 blackbird, but I’ll tape the ‘dawn chours’
6:26 171MB, let’s see if a blackbird is on it.
-7:44 greeted by woodpigeon and chiffchaff. Slight frontal headache, maybe from slightly damp hair going to bed, or just the weird weather or too cold bedroom. BP 124/83-61. Still feel nimble after a night of very deep sleep.

2) Watching TRIGGERS, esp. of exhaustibility. Jun 29th- 1 of 5 bites playing up (❌). Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Click for list Nov 7th 2022 to Feb 20th...."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition :white_check_mark:: Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) :x:,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first :white_check_mark:, from Jun 8th on :x:.
(Jun 10th) Too long 55’ public health officer appt., immediately: :x::x::x:.
(Jun 26th) Did go well :white_check_mark:, but all too much, not recovered beforehand, so stays :x:.
(Jun 29th-) 1 of 5 bites playing up (:x:).

(3) DOCS: Trying for higher disability from Apr 25th on, cardio (Jun 26th) has helped immediately, let's see when allergist comes and when I'll be able to manage a GP appt. Click for latest (Jun 22nd) details.)

DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, trying follow-up per mail. Jun 10th appt. with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: July 4th, 7:50: BP 124/83-61, perfect. Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)

(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP :white_check_mark:, despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down :white_check_mark: (SBP ~100), so 2mg is a good compromise :white_check_mark:. (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun
20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

Last esophagus BLOCKS: Jun 25th & May 7th 2024. Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating if slightest pressure, 0224-06-22: better acid / gut.

SELF-TREATMENT & SUPPS optimal, stable, but necessary, re-ordering silymarin Jun 24th. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Re-order silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids), see research Jun 22nd. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing, tinnitus & balance problems for 15h. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

Quality of life: 90%

Lessons in self-care:

  • Maybe trying to keep away from my laptop in the daytime means getting less done and adding it on before bed?
  • If holding the camera is getting harder, it may be time to think about supps more, for body & brain fatigue.
  • Mixed up pills again, cos of not managing to get them all prepared. Dangerous esp. cos of GABA, like 9:29 I had 2 GABA pills in my hand and suddenly forgot what it was and took both, then realised 1 was meant for my 2nd meal. Had no bladder or seizure problems tho, and felt better during TT at 18:00. But still I need to prepare them better, in one go.
  • Feeding the guinea pig 4h/d I have to keep reminding myself is a big strain.
  • (Need to test my ‘new’ used (11 year old) laptop, everything was refurbished except the battery it seems, so on certain pages the ventilator goes on overdrive, like on the old one. Wondering if I should just get a new battery put in for 210€, cos together with the price it’s still OK.)
  • The problem with pushing thru the pain (like now standing more) is: being able to think / concentrate less. Pushing thru the fatigue even more so, another reason I can do less and less. I become less effective, thinks go wrong, so I have to repeat them, and it’s not enjoyable any more. So better decrease standing again.
  • With being outside, the machine noises in the neighbourhood aren’t good for me. (Same as with airing more, esp. at night.)
  • Bed before 23:00 helped → helps (of course…).

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
Realising that all plants with big blossoms are not native, whether it’s hydrangea, suneyes/oxeyes, Rose campion, roses, evening primrose, and smaller a lot of the bellflowers too: trailing and Alba. So that means a lot of the flowers useful for bio-diversity, insects, birds, animals have small blossoms, less spectacular, and I have to get used to a green garden first. (Edit: But the tree blossoms, like the cornel cherry and cherry in the spring may be small, but make up for it by being a large amount.)
b) Birds:
Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Blackbird family less shy, subsong, short bursts of full song :white_check_mark: Robins short bursts :white_check_mark: Sparrows (:white_check_mark:) Blackcap singing only at TT (:white_check_mark:) Swifts 10x :white_check_mark:, Magpies :white_check_mark: Jacks :white_check_mark:, bathing 10x/d :white_check_mark:, Crow :white_check_mark:, Great Tits (nesting box) & BlueTits :white_check_mark:, Collared dove :white_check_mark:.
Latest / earliest robin song: …22:30/ <4:00…

(Regular cheer, song/calls/seen - Chaffinch :white_check_mark:, Chiffchaff :white_check_mark:, Wren song and family here less (:white_check_mark:), Great Woodpeckers left mid-June but back around 30th :white_check_mark:, all song thrushes singing a lot again nearby :white_check_mark:), Dunnocks 0, Nuthatches 0.

  • 11:37 incited robin to sing by playing a recording. I was actually looking for a wren, but a robin is on the same recording and he heard it.
  • 11:50 young blackbird again near me, less shy.
  • 13:49/13:55 wren!? Bathing: small, but darker than wren, fluttering tail, but not upwards), before him GreatTit. BlueTit in feeding bowl. Before the woodpigeon pair.
  • 16:51 maybe woodpecker.
  • 16:56 The GreatTits(s) have flown out, and they have black areas like the BlueTit(s). Strange. I hope they’re OK. 17:35 managed to film the GreatTits. Been making one hell of a noise all day.
  • 17:50 Robin alarm call too, thought it might be the wren first, but then saw him chirp.
  • 18:25 2 woodpigeons cooing at exactly the same time, same rhythm, same speed, one high and emphatic, one low and calm, just one stopped before the other. Never heard that coincidence happen before.
  • 4:35 on the dawn chorus tape it’s actually my Blackie singing from 4:35-4:40 and 2x short motifs 5 and 10’ later.
  • 7:44 chiffchaff

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel in cornel cherry and feeding bowl :white_check_mark:)
Bats (:white_check_mark:) Bank vole(s) (:white_check_mark:). Insects: bees, flies, spiders, butterflies & bugs :white_check_mark:. Snails & slugs :white_check_mark:.

  • 11:49 funny I heard the “kissing” type sound to warn everyone I’m around, so they’re not startled. Then saw it came from squirrel above me in the elderberry next to the nest. Has he copied that from me?
  • 12:09 bank vole coming ‘home’ to the insect palace.

e) Human life: (TT laughter (after all) :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Art: my paintings :white_check_mark: Music listening (:white_check_mark:) Nice talks (:white_check_mark:))
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body (:x:). Brain (:x:).)
Forgetting supps: dangerous, esp. GABA.

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023