JayCS’s Fibro Blog

2024-05-11 Saturday

Summary:

  • LDN Mar 21st- 3mg :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 20% (:x:), energy profile “slow”, TT 13:03 2:2 with effort (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Creatine monohydrate Apr 9th- 2x5g for more slow energ
  • Triggers: Tahin 30-40g along with 150g baked beans yesterday and 150g today. At night problems from bite, awake praps from bb + tahin (tongue slight, 0 sinus, but stomach ache at 5 and runny nose at 6:45
  • QCS at 2:00 (VQVCS)
  • Cheer: GreatTit flirt. Bees at the celandines. Visited The Gardens. Cats.
LDN: Mar 21st- 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 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 2:2 with effort (moving 15%, talking 15%, counting 15%) ❌, moving ➔ 80%/3-4 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" ❌ and sleep 7h ✅ (QCS: 2:00 ➔ 3h stint ✅, but then wide awake, praps histamine ❌ ("PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h 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): , all deep ✅, QCS at :00 QCS (VQVCS?) (first unnec from LDN, started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).

Sleep 23:05-7:20 5+20+5+5+40’, 30’ deep doze. Sum: h55+7h20-(x5’=)75’ = 8h15-1h15 = 7h.
-23:05:00
0:36 5’
1:55 20’ scratched bite under navel, so need QCS 2:00, plus check my backups.
2:11 considering bb + tahin my tongue was only slight, and 0 sinus.
5:18 robins, blackbirds & greattits singing.
5:21 stomach ache, dunno what from, throat hurting cos dry
6:06 awake again, maybe histamine from tahin/baked beans??
-6:43 6. Runny nose seems a bit histaminey.
-7:15 only deep dozing the half hour, but feel a bit more awake.
7:20 I’d forgotten one of the brown pills, might have added to it.

2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: 14:25 150g baked beans yesterday, 150g today, tongue tip numb, but not burnt, 14:37 some tahin = sesame might have added, 30-40g 5:21 stomach ache, dunno what from, 6:06 awake again, maybe histamine, 6:43 runny nose seems a bit histaminey too ❌, 0 marmite. Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around 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).

(3) DOCS: Click for latest (April 26th) details.)

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 med effects: Click for latest (Mar 21st) & next changes, and details...)

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 (✅)): Drank 2.5L. Esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2), May 2nd (1). Click for latest (May 7th) & 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 - May 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 , 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. May 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), Mar 21st- LDN 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-. Mar 21st- LDN 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: 92%

Lessons in self-care:
Unburdened myself by unburdening my storage space, digitally saving my stuff and transferring / saving to external disks. So easy to re-format them - why not before! :face_with_monocle: Only the notes are difficult to migrate.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
16:22 A visitor of my neighbour’s called my garden rustic, and I agreed I’m trying to make it as rustic as possible.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Robins :white_check_mark: Blackbird :white_check_mark: Sparrows :white_check_mark: Nuthatches :white_check_mark: Magpies :white_check_mark: Dunnocks :white_check_mark: Great&BlueTits :white_check_mark: Jacks :white_check_mark: Chaffinch :white_check_mark: Chiffchaff :white_check_mark: Collared dove :white_check_mark: Blackcap :white_check_mark: Swifts 8x :white_check_mark: Birds bathing 3x :white_check_mark:) Latest / earliest robin song: …21:40 / 4:30…
(Regular cheer, song/calls/seen: Wren Great Woodpecker? Crows Song thrush in local gardens)

  • 9:23 2 GreatTits seeming to flirt, spiralling upwards against and around each other, bit similar to blackbirds, but not fighting.
  • 13:03 Praps Great Woodpecker in neighbourhood.
  • 22:04 Light brown bird in the rose, not a female blackcap, cos they have a brown cap, I think a willow warbler (Fitis) or a chiffchaff, hearing them often doesn’t mean we know what they look like.
  • 22:19 Raptor today 400m high had a white body, so don’t think red kite.

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:

  • Bees at the celandines around the house (despite them not offering that much for them).
  • Caring for friend’s cats is a chore, but nice.

e) Human life: (Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark:)
f) Environment: (Outdoors :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)
Foggies: (Body (:x:). Brain (:x:).)
Simplified: To make the mountain of digital storage a molehill I’m focusing on it and researching how to simplify, which is saving a lot of energy in the mid-term.

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

Wednesday 15th: Weird stuff happening, so didn’t catch up with this today either. Gotta feed the guinea pig again. Getting used to the new laptop, migrating stuff. Wife’s problems with parents’ health and stubbornness. Wife had a small car accident today. Lots of new stuff in the garden. But tomorrow - tomorrow will come. :wink:

2024-05-12 Sunday

Summary:

  • LDN Mar 21st- 3mg :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 20% (:x:), energy profile “slow”, TT whoops, didn’t note that, 2:2? (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Creatine monohydrate Apr 9th- 2x5g for more slow energy.
  • Triggers: kept them down.
  • QCS at :00 (VQVCS?)
  • Cheer: Lots of nature at habitat place, esp. 4 pairs of Canada geese, at least one with goslings, and a turquoise with a brown-orange dragonfly, and a black one. Dawn chorus incl. GreatTit started at 4:15-4:30.
  • self-care: habitat place a bit further away – bit too far, and then caring for cats made everything get too late, which cost a lot of sleep.
LDN: Mar 21st- 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 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 2:2? (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (✅) - long but slow cycle ride, jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" ❌ and sleep 6h01, 95' of that deep doze. (QCS at 4:20, unsuccessful (❌), "PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h 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): 6h01, 95' of that deep doze, QCS at 4:20, unsuccessful (❌), QCS at :00 QCS (VQVCS?) (first unnec from LDN, started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).

Sleep 23:55-7:01 5+5+25+25, 30+65 of that deep doze, QCS at 4:20, unsuccessful (:x:). Sum: h05+7h01-(x5’=)60’ = 7h06-60’ =
23:35 2nd bite on navel is behaving, had to drink a lot when we were back home (sun, no drink with me), so dunno if I’ll have to get up even more.
23:55 after Back exercises and looking up how to migrate my notes.
1:43 5’ A3 apigenin
3:35 Dreamt about transferring notes. Overheated, so took longsleeve off and switching upper duvet.
4:10 Can’t sleep too well, but good time for QCS cos still overheated.
4:13 Brilliant time to wake up, cos birds not singing now, but Between toes stinging, so tea tree oil next.
4:15 Now street robin and one further away are starting up in very short bursts.
4:22 First blackbird: street one at 4:20 in short bursts. QCS. Putting that on template.
4:32 70’ before sunrise. 2 robins and even a GreatTit calling, several blackbirds.
4:34 back to bed at -4:35
5:40 like yesterday feeling as tho I’m only deep dozing, 6, all the time since 4 or before .
-6:04 end of 6. 2 white and 1 brown pill.
-7:23 wren up at 7:01, wide awake, too little sleep. Bed too late.

2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: 20g goat cheese (✅), no marmite or other histaminey stuff. Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around 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).

(3) DOCS: Click for latest (April 26th) details.)

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 med effects: Click for latest (Mar 21st) & next changes, and details...)

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 (✅)): 15:29 peeing is a strain, as often. Esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2), May 2nd (1). Click for latest (May 7th) & 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 - May 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 , 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. May 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), Mar 21st- LDN 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-. Mar 21st- LDN 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: 92%

Lessons in self-care:
23:16 Much too long cycle, then cats, quicker, worrying about guinea pig losing weight, so I’m be feeding again. Not too much histaminey stuff. Taking off longjohns on cycle, but feeling cold.
Bed too late reduced proper sleep to 4.5h, plus 1.5h of deep doze.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Robins :white_check_mark: Blackbird :white_check_mark: Sparrows :white_check_mark: Nuthatches :white_check_mark: Magpies :white_check_mark: Dunnocks :white_check_mark: Great&BlueTits :white_check_mark: Jacks :white_check_mark: Chaffinch :white_check_mark: Chiffchaff :white_check_mark: Collared dove :white_check_mark: Blackcap :white_check_mark: Swifts x :white_check_mark: Birds bathing x :white_check_mark:) Latest / earliest robin song: …21:40 / 4:15…
(Regular cheer, song/calls/seen: Greenfinch Wren Green woodpecker Ravens Crows Song thrush)

  • 15:57 Stork with 1+ young one.
  • 15:59 Green woodpecker, 8 Canada geese, with goslings.
  • 16:39 raven
  • 16:41 6+ starlings
  • 17:09 nestling behind fence,
  • 17:09 song thrush
  • 18:05 30+ jacks, carrion crows, blackcaps, chiffchaffs, all sorts.

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

  • butterflies,
  • turquoise + orange-brown dragonflies flirting.

e) Human life: (Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark:)
18:05 wife’s idea of a shortcut turned out wrong (like I thought and asked 2x), cost us 30’ strain, we came out at a Hof with Rassetaube and a turkey. No problem for me emotionally, radical acceptance - plus her mistakes distract her from mine :stuck_out_tongue_winking_eye:

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

Despite today Thursday being again another emotionally taxing one I’ve managed to catch up with a 2nd entry - by disregarding my screen curfew a little…

2024-05-13 Monday

Summary:

  • LDN Mar 21st- 3mg :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 20% (:x:), energy profile “slow”, TT 0:1 ➔ 2:1 (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Creatine monohydrate Apr 9th- 2x5g for more slow energy.
  • Triggers: 3rd insect bite. Thirsty.
  • QCS at :00 (VQVCS?)
  • Did: helped neighbour 45’, grass 30’, fed guinea pig (strain, keeps me indoors), glass/grocery, planted, phoned public health officer, focal seizure, deep 5‘ conversation with ‚stranger‘, contacted attorney.
  • Cheer: * First blossoms: firethorn, portenschlagiana, wild rose white, Tradescantia, buds of fairy bellflowers (persicifolia), white. Found veronica.
LDN: Mar 21st- 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 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 0:1 ➔ 2:1, despite seizure and strenuous day - brain feels "cleared". (moving 15%, talking 15%, counting 20%) ❌, moving ➔ 80%/3-4 (✅), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually ?"80%" ❌ and sleep 8h21 ✅: 3rd bite, thirst helmet headache (QCS: ✅ "PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h 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): 8h21, all deep ✅, QCS at :00 QCS (VQVCS?) (first unnec from LDN, started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).

Sleep 22:30-7:06 3x5’, 0 deep doze. Sum: 1h30+7h06-(3x5’=)15’ = 8h36-15’ = 8h21.
bed at 22:30 after back exercises. sore throat and sneezing cos I’d only had 3 pairs of socks and no longjohns on, partly longsleeve, and cooler towards the evening.
22:25 3rd insect bite: 2 under navel, 1 lower back.
0:56 5’ bit sore throat cos longjohns off.
3:09 5’ 2+2 pills, itch tolerable, sore throat still, and dry,
6:01 5’ thirst helmet headache
-7:06 still bit of helmet headache, so drinking now.

2) Watching TRIGGERS, esp. of exhaustibility. 3rd insect bite: 2 under navel, 1 lower back, itch tolerable at night. Histamine foods: 20g goat cheese (✅), ?marmite ❌. Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around 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).

(3) DOCS: Click for latest (April 26th) details.)

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 med effects: Click for latest (Mar 21st) & next changes, and details...)

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 (✅)): 16:15 focal seizure just from taping a bird (actually probably too little sleep), but 1h later TT 2:1 - brain feels "cleared". Esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 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 7th) & 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 - May 13th (1) May 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, 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. May May 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), Mar 21st- LDN 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-. Mar 21st- LDN 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: 92%

Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms, 17:00-18:15)

  • First: firethorn, portenschlagiana, wild rose white, Tradescantia, buds of fairy bellflowers (persicifolia), white. Found veronica.
  • Increased: iris, onion of Persia and yellow rose.
  • Growing: Evening primroses, less than last year visible as yet, only 5-6 big ones.
  • daughter of neighbour brought me about 8 Balkan / long-rooted geraniums.

b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Robins :white_check_mark: Blackbird :white_check_mark: Sparrows :white_check_mark: Nuthatches :white_check_mark: Magpies :white_check_mark: Dunnocks :white_check_mark: Great&BlueTits :white_check_mark: Jacks :white_check_mark: Chaffinch :white_check_mark: Chiffchaff :white_check_mark: Collared dove :white_check_mark: Blackcap :white_check_mark: Swifts x :white_check_mark: Birds bathing x :white_check_mark:) Latest / earliest robin song: …21:50 (blackbirds 21:40-45) / 4:30…
(Regular cheer, song/calls/seen: Greenfinch? Wren? Bullfinch? Treecreeper? Great Woodpecker? Green woodpecker? Ravens? Crows? Song thrush? Above: Ducks? Heron? Peregrine? Grey goose?)

  • 18:12 house sparrow.
  • 18:12 BlueTit turns almost black from bathing.
  • 18:12 wren
  • 21:37 both blackbirds were very singing prominent right up at, mine longer stint, now scolding, neighbour still.
  • 21:41 My blackbird one last motif, and neighbour one as well, same short motif as mine, robins now battling.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank voles 0. Insects: bees, bugs :white_check_mark:
e) Human life: (Skip-Bo :white_check_mark: Wife :white_check_mark: Art :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

2024-05-14 Tuesday

Friday’s interlude: self-caring meant not pinning down my voice notes today, so still lagging behind… - seemingly eventful day, quite good all in all.
Summary:

  • LDN Mar 21st- 3mg :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 20% (:x:), energy profile “slow”, 18:11 TT easy 1:3 (:white_check_mark:) , jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Creatine monohydrate Apr 9th- 2x5g for more slow energy.
  • Triggers: 22:35 3 bites now around my waist.
  • QCS at 3 (VQVCS)
  • Cheer: 18:11 peregrine.
LDN: Mar 21st- 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 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 1:3 - easy (moving 15%, talking 15%, counting 20%) ❌, moving ➔ 80%/3-4 (✅), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" ❌ and sleep 7h30 ✅ (QCS at 3 ✅, "PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h 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): 7h30, all deep ✅, QCS at :00 QCS (VQVCS?) (first unnec from LDN, started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).

Sleep 23:00-7:00 5+20+5’, 0 deep doze. Sum: h+h-(x5’=)30’ = 8h-30’ = 7h30.
23:00‘
1:46 5‘ everything’s behaving, woke up from a dream of 2 moles half dead, praps needing water, probably something to do with our guinea pigs.
3:05 5‘+15‘=20‘ bum bite OK, but overheated, so QCS, despite no longsleeve and only 4 pairs of socks, but longjohns on, still best to keep it that way.
3:23 so looking forward to it raining cats and dogs Saturday and Sunday, not wanting to let one drop go uncollected, running thru the rain to fill up all the buckets and get the rain barrel again.
3:23 Put tea tree oil on the 2 spots under my foot, bigger and smaller, might be injury, but also fungus, so switching as ever between tea tree oil and calendula essence.
3:23 Keep thinking of the disability officer contacting me for making sure that it’s OK for me that I will now be retired, and she contacted her phone, but I’ll answer her mail. It’s easier than she fears, cos I want to be retired.
6:10 2+2 pills
7:00 up
A lot of 95% sleeping, had feeling always thinking about things. Nothing dramatic, but not deepest possible.

2) Watching TRIGGERS, esp. of exhaustibility. 22:35 3 bites now around my waist, a mean place, so have to oil my whole body, hope it doesn’t disturb my sleep too much: nope, didn't. Histamine foods: 20g goat cheese (✅), ?marmite ❌. Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around 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).

(3) DOCS: Click for latest (April 26th) details.)

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 med effects: Click for latest (Mar 21st) & next changes, and details...)

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 (✅)): At TT I was able to reduce my brain excitement every time I realized I was too overconcentrated, overstressed, playing points, thinking of something else, managed to keep the danger of a seizure down. 22:35 bit annoyed that my itchy feet do have a reason, at least my right foot has a sore spot. 3:23 Put tea tree oil on the 2 spots under my foot, bigger and smaller, might be injury, but also fungus, so switching as ever between tea tree oil and calendula essence. Esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 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 7th) & 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 - May 13th (1) May 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, 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. May 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), Mar 21st- LDN 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-. Mar 21st- LDN 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: 92%

Lessons in self-care:
3:23 Keep thinking of the disability officer contacting me for making sure that it’s OK for me that I will now be retired, and she contacted her phone, but I’ll answer her mail. It’s easier than she fears, cos I now want to be retired.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
9:31 50 buttercups, 30 daisies, 10 veronica
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Robins :white_check_mark: Blackbird :white_check_mark: Sparrows :white_check_mark: Nuthatches :white_check_mark: Magpies :white_check_mark: Dunnocks :white_check_mark: Great&BlueTits :white_check_mark: Jacks :white_check_mark: Chaffinch :white_check_mark: Chiffchaff :white_check_mark: Collared dove :white_check_mark: Blackcap :white_check_mark: Swifts 12x :white_check_mark: Birds bathing 4x :white_check_mark:) Latest / earliest robin song: …21:50 / 4:20…
(Regular cheer, song/calls/seen: Greenfinch Wren Raven Crow )

  • 9:16 crow flew over me, answered a crow in the background, I was surprised how small it was, so it seems what we are seeing if we’re not sure is a raven.
  • 9:31 just saw what I read the other day: The coal tits we saw the other day, they are mum and dad flying to the nesting box. The flurrying of their wings must mean something else, pair activity, can’t be small ones
  • 11:11 wren again, short calls, think I’ve identified it now, not bird babies. Blackbirds. Robins all around. Pigeons wooing in amelanchier
  • 11:15 GreatTit after all, last call on my bird call training CD.
  • 11:52 first swifts at 7:15 or 7:30
  • 18:11 during TT: 2-3 blackbirds very close to each other with a lot of echo effects, singing 50 yards apart
  • 18:11 didn’t hear, but saw peregrine fairly low down, need to look upwards more
  • 18:11 wren
  • 18:11 chiffchaff
  • 18:11 unknown in attorney’s backyard
  • 20:28 carrion crow
  • 20:29 raven
  • 20:30 blackbird and 2 greatTits bathing at the same time, then blackbird singing his main motif.
  • 7:13 So happy about the blackbird song everywhere, my heart goes up and out every time – only 2 months to go, then 6 months without!

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:
11:11 Bank vole, much bigger, full size, 13cm, shyer than it used to be.
7:16 It seemed yesterday I got guinea pigs weight up by 90g, praps a scale error? First vet couldn’t find anything, so have to go to the tooth vet. Relieved that he’s completely normal and seems getting used to all this doc stuff.

e) Human life: (Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark:)

  • 22:35 In the evening I was able to comfort my wife with her family and guinea pig worries.

f) Environment: (Outdoors :white_check_mark:.)
3:23 so looking forward to it raining cats and dogs Saturday and Sunday, not wanting to let one drop go uncollected, I’ll run thru the rain to fill up all the buckets and get the rain barrel full again.
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

2024-05-15 Wednesday

Summary:

  • LDN Mar 21st- 3mg :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 20% (:x:), energy profile “slow”, TT 3:0 with 2nd mate (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Creatine monohydrate Apr 9th- 2x5g for more slow energy.
  • Triggers: no.
  • QCS upon getting up (VQVCS)
  • Thoughts:
  • Feelings: Relieved and happy about the phone, that’ll make such a difference.
  • Cheer: Lots of new and increasing blooms, lots about blackbirds, bit magpies, Wife overhappy that I got her beloved old phone repaired.
  • Foggies: forgot several things, doubled my distance.
LDN: Mar 21st- 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 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT TT 3:0 with 2nd mate, last game was close (moving 15%, talking 15%, counting 20%) (❌), moving ➔ 80%/3-4 (✅), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" ❌ and sleep 7h27 ✅ (QCS: ✅ "PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h 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): 7h27, all deep ✅, QCS at :00 QCS (VQVCS?) (first unnec from LDN, started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).

Sleep 23:05-:7+5’, 0 deep doze. Sum: h55+6h44-(x5’=)12’ = 7h39-12’ = 7h27.
23:05 after back exercises
2:45 7‘ A3 + apigenin supps cos feeding the cats late made everything much later and prepared GABA
5:19 weird, 2+2 pills, sleeping so well, can’t imagine why
6:42 while thinking about getting up I got the image of a child in a go-cart driving under a moving train, which made me start, before that I’d had some train images, so re-imagined the go-cart idea by imagining the child driving under the train and coming out at the other end and being able to stay in the space under the train until it was gone.
6:44 not sure if I should get up, but light is so bright?

2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: 20g goat cheese (✅), marmite 0. Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around 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).

(3) DOCS: Click for latest (April 26th) details.)

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 med effects: Click for latest (Mar 21st) & next changes, and details...)

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 (✅)): Esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 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 - May 13th (1) May 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, 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. May 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), Mar 21st- LDN 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-. Mar 21st- LDN 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: 92%

Lessons in self-care:
6:42 while thinking about getting up I got the image of a child in a go-cart driving under a moving train, which made me start (before that I’d had some train images), so re-imagined the go-cart idea by imagining the child driving under the train and coming out at the other end and being able to stay in the space under the train until it was gone.
14:29 Spent whole morning indoors after guinea pig and cooking and computer problems, so feeling bad. Better try feeding inside the cage.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
7:42 :new: deutzia, elderberry, treble blossomed rose, still not too heavy yet, dianthus (sweet William) more than last year (5), the first white fairy bellflowers, 5-6, yellow wallflowers 6 now, haven’t be aware up to now there’s celandines behind the hazel and in the stairs up to the first flat, the grass in the concrete is now 60cm high and seeding beautifully, the red-yellow-orange wallflowers are still there, the bees are still in the celandine and nowhere else, OK the Scotch broom (partly finished), the dog rose now has 3 flowers.
7:53 40 buttercups, hedgemaids still blossoming 20-30 in garden, more in front of house.

b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Robins :white_check_mark: Blackbird :white_check_mark: Sparrows :white_check_mark: Nuthatches :white_check_mark: Magpies :white_check_mark: Dunnocks :white_check_mark: Great&BlueTits :white_check_mark: Jacks :white_check_mark: Chaffinch :white_check_mark: Chiffchaff :white_check_mark: Collared dove :white_check_mark: Blackcap :white_check_mark: Swifts x :white_check_mark: Birds bathing x :white_check_mark:) Latest / earliest robin song: …21:40 / 4:30…
(Regular cheer, song/calls/seen: Song thrush)
7:14 Blackie on street flew up from street to neighbour’s lonicera, started scolding, flew up to our rooves, no idea what that was about.
7:53 Magpie Splitty around, then another whilst flying didn’t spread the tail, so maybe they’d have a split too.
14:29 Blackie bathing in front of the cellar window.
14:33 magpie in front of cellar
14:35 brown ball with yellow beak on it turned out Blaxie bathing
15:46 again female Blaxie, this time sunbathing on stones, then bathing in 2 bowls, 2 GreatTits around me
18:53 song thrush after TT
21:13 GreatTit young ones still squeaking in the nesting box
21:36 Brilliant black bird scolding battle cos they alternated the various scolding types and echoed them, my blackbird then ending on a high single note scold, the other one on a lower. Thought he’d sing again, but didn’t catch it.

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:
e) Human life: (Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark:)
Wife overhappy that I got her ancient phone repaired by bringing a used one I’d ordered to a phone shop. Only now could she - first almost disbelieving - admit that she was also fault about it breaking, finally.
After 3rd TT game my mate chopped the ball towards me in frustration – but I caught it all the same, we laughed our heads off about the double humiliation.

f) Environment: (Outdoors :white_check_mark:.) Rain?
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)
Foggies: (Body (:x:). Brain (:x:).)
18:33 Forgot my rucksack for TT, and thought I forgot one of the phones when I was at the phone shop, back home it turned out I hadn’t looked in my rucksack properly.

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

(finished Sunday - had to transfer notes twice cos of a glitch plus a foggy :roll_eyes:)

2024-05-16 Thursday

Summary:

  • LDN Mar 21st- 3mg :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 20% (:x:), energy profile “slow”, TT not available, jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Creatine monohydrate Apr 9th- 2x5g for more slow energy.
  • Triggers: stomach ache till 2 from tahin / sesame. Work issue angering.
  • QCS at 4:00 (vQvCS) cos of anger.
  • Thoughts: -
  • Feelings: Work anger is good, just a bit difficult to keep it out of my thoughts at night.
  • Cheer: Quick shop. Screaming party. Woodpigeon nest above GreatTit nesting box. Birdsong later and earlier. Guinea pig OK(?)
LDN: Mar 21st- 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 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT not available, moving ➔ 80%/3-4 (✅), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" (❌) and sleep 7h14 (✅ - cos of anger), (QCS: ✅, "PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h 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): 7h14, all deep, but troubled by work issue ✅, QCS at 4:00 QCS but didn't help enough (very quick very cold shower; first unnec due to LDN, but started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).

Sleep 23:25-7:57 5’+1h08+5’, 0? deep doze. Sum: h35+7h57-(x5’=)1h18 = 8h32-1h18 = 7h14
23:08- bed
23:24 now bed
2:04 still stomach ache slightly and sore throat from late hair washing & drying
3:44 2nd break 1+1 pills sore throat better after calendula and putting 5th pair of socks on, now longsleeve too, dry throat, sleeping deep.
3:54 first 2 robins audible, that’s 20‘ earlier than the other day
3:57 thinking about how to answer the clarification at work
4:07 VQVCS to get stress out of system, altho it’s only slight, just in case tho, or seems it.
4:18 back to bed, no 4:22 q6 -4:52 = 3:44-4:52 = 1h08
6:28 5‘, have been sleeping, still sore throat
-7:57 praps not that deep sleep, usually thinking about work
.

2) Watching TRIGGERS, esp. of exhaustibility. Work issue angering. Sore throat from late hair washing & drying. Histamine foods: belly ache from tahin / sesame until 2 ❌, 20g goat cheese (✅), 0 specks of marmite. Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around 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).

(3) DOCS: Click for latest (April 26th) details.)

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 med effects: Click for latest (Mar 21st) & next changes, and details...)

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 (✅)): Last seizure May 13th: 11 days without, last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 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 - May 13th (1) May 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, 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. May 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), Mar 21st- LDN 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-. Mar 21st- LDN 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: 92%

Lessons in self-care:
15:30 For shop only 18‘ from start to finish, getting everything I wanted incl. Money at the checkout, small talk, cycling there and back! :trophy:
20:09 got really angry at midday getting 2 mails at the same time explaining my work perspective and financial situation, one being perfectly correct explaining that I have no overtime, my direct boss had said something different. :anger:
3:57 thinking about how to answer the clarification at work. :roll_eyes:
Fun to be angry :anger: :+1:, esp. cos the mails confirm I was right – but annoying that it comes up at night. :roll_eyes:

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
20:07 small elderberry under lonicera now has a 2nd blossom group
20:07 elderberry tree at back now has two sets of blossoms.
20:07 I think the pink rhododendron is not ponticum (invasive), so catawbiense, but I haven’t got an official answer yet.

b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Robins :white_check_mark: Blackbird :white_check_mark: Sparrows :white_check_mark: Nuthatches :white_check_mark: Magpies :white_check_mark: Dunnocks :white_check_mark: Great&BlueTits :white_check_mark: Jacks :white_check_mark: Chaffinch :white_check_mark: Chiffchaff :white_check_mark: Collared dove :white_check_mark: Blackcap :white_check_mark: Swifts 10x :white_check_mark: Birds bathing 2x :white_check_mark:) Latest / earliest robin song: …22:00 / 3:55… (10’+ later/earlier since May 16th).
(Regular cheer, song/calls/seen: Wren.)
12:10 wren just flew at me, I think.
15:30 a screaming party with 10 swifts over my shop
17:42 greattit babies chirping very loudly
17:42 woodpigeons making a nest between elderberry and serviceberry.
21:15 swifts 3-5 still flying around this late.
22:00 still one blackbird singing, praps the street blackbird and my and neighbour’s robin.
3:54 first 2 robins audible, that’s 20‘ earlier than the other day

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank voles (20:07 short glimpse) :white_check_mark: Insects: bees, bugs :white_check_mark:
12:10 guinea pigs tooth problems aren’t as big as thought, the 2nd vet thinks, hope so.
17:42 hornet in the cherry.

e) Human life: (TT laughter :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark:)
f) Environment: (Outdoors :white_check_mark:.) Eager for the rain, but only two 10L buckets full came down.
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

(2nd entry I’ve managed today, Sunday)

2024-05-17 Friday

Summary:

  • LDN Mar 21st- 3mg :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 20% (:x:), energy profile “slow”, TT 4:0 body OK, brain overloaded (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Creatine monohydrate Apr 9th- 2x5g for more slow energy.
  • Triggers: 50‘ video meeting with sis. Listening to music a bit more. Pushing thru both is OK.
  • QCS after getting up.
  • Thoughts: Talking to my sis and a neighbour spawned my ideas about my = the blog’s development from research to reasons to be cheerful… see under Quality of Life (text I wrote and adjusted above the template since Friday.
  • Feelings: Getting clearer about work and trying for more disability, see Quality of Life too.
  • Cheer: video meeting with sis. Sitting in the veranda with wife.
LDN: Mar 21st- 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 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 4:0 effortless and no pain, but brain on overload, that was the reason to stop (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (✅), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" (❌) and sleep ✅ (vQvCS: ✅, "PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h 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): , all deep ✅, QCS at :00 QCS = very quick very cold shower (first unnec due to LDN, but started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).

Sleep :-: x5’, 0 deep doze. Sum: h+h-(x5’=)’ = h-’ = h.

2) Watching TRIGGERS, esp. of exhaustibility. 12:22 50‘ video meeting with sis - pushing thru turned out OK. Histamine foods: 20g goat cheese (✅), x specks of marmite (❌). Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around 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).

(3) DOCS: Click for latest (April 26th) details.)

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 med effects: Click for latest (Mar 21st) & next changes, and details...)

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 (✅)): Last seizure May 13th: 11 days without, last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 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 - May 13th (1) May 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, 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. May 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), Mar 21st- LDN 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-. Mar 21st- LDN 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: 92%

Thoughts about the blog’s development:

From “better” to “best”: from focusing on „making my health better* to focusing on an attitude of „making the best of it“ by searching for reasons: to be cheerful and happy with a high quality of life.

Every action or rest can well be a trigger and/or a reason to be cheerful/happy.
Now I know my triggers (>90%) and how to reduce their effects, I can focus more on cheer.
If I want to be cheerful, I can be. It’s a choice I have every second of my day. Now. Now. And Now. My long lists are only my faves. The short times / events where I’m not cheerful are under “lessons in self-care”.

Lord, thank You for continuing to give me the wisdom to distinguish what I can change from what I can’t, the power to challenge both, to change and to cope (see Reinhold Niebuhr’s Serenity Prayer). I admit I’m getting bored with and laxer at focusing on my health.

Feelings about work and disability
I’m getting used to the idea of applying for more disability as my working time is coming to its end. It’s helped that I read that I’ll be getting 11% less retirement pay due to stopping earlier. Which is OK. But makes me want to balance that out by getting more tax back via more disability and praps the tax office will then be more inclined to set off my supps and other extra health costs for liability.

Lessons in self-care:
Pushing thru the video call was OK in the end, exhilerating, that’s probably the difference to people who aren’t as close

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
8:29 phacelia at front of house blossoming now
8:29 hydrangea budding in the middle of the flowerbed
8:29 all beautiful with raindrops
8:36 strange how quick the 3 iris blossoms wilted inside of a few days, glad I had a good look.
8:36 3 poppy buds getting thick and colour peeping out.
8:36 The snail on the mugwort/artemisia inspires me to look at all the old stems even more closely, they’re beautiful, I have absolutely no desire to remove them.
8:39 I did clean up some celandine and other dead leaves tho, to improve their growth.
8:39 don’t want to take out more celandines out of the pot area, but I’m still not sure what to do with it, praps I should just watch what happens, like last year and see if other plants manage to get thru – some that do are valuable for insects, like stinging nettles.
9:37 wild roses blossoming more and more 50, and the red roses 35 too.

b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Robins :white_check_mark: Blackbird :white_check_mark: Sparrows :white_check_mark: Nuthatches :white_check_mark: Magpies :white_check_mark: Dunnocks :white_check_mark: Great&BlueTits :white_check_mark: Jacks :white_check_mark: Chaffinch :white_check_mark: Chiffchaff :white_check_mark: Collared dove :white_check_mark: Blackcap :white_check_mark: Swifts x :white_check_mark: Birds bathing x :white_check_mark:) Latest / earliest robin song: …21:50 / 4:00… (10’ later/earlier since May 16th).
(Regular cheer, song/calls/seen: Wren Raven. Above: Heron)
8:29 Saw robin pair again, first 1 bathing, then 1 singing, first subsong a bit, then louder sounding a bit like a blackcap
8:29 Baby GreatTits making a lot of noise, until then I can’t get the rhododendron blossoms off
8:29 Sang to Robin, sang back, tail up looks like flirting, like I saw from the female one a while back when trying to two-time.
9:37 after a short scuffle on the flat roof next door, my Blackie went up to his high tree and sang, to show he’s a boss here, and then the other one did the same to his high tree.
9:37 jacks in the background, praps a raven too
21:50 bedlam from greattits and robins – realized next day that the greattits had flown out.
21:50 physical battle between 2 or 3 blackbirds, as a result neither mine sang, the robin sang only 5‘ at 21:30, nothing else, silent, weird, pity, but interesting.
21:50 the grey heron flying east (sleeping place).

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:
8:29 buff-tailed bumblebees in the celandines and Scotch broom in celandines as ever
8:36 snail on one of the old mugwort stems from last year.
21:50 2 bats, before sundown I could see the wings well.
21:52 tiny red spider buzzing around on a white pot in front of our eyes, we were joking it’s on LSD and cocaine.

e) Human life: (TT laughter :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark:)
12:22 wonderful talking to my sis in a 50‘ video meeting that started hurting after only 2‘, so it hurt a lot, but ebbed, and worth it. Fine with work, which is excellent. Last 5’ I got carried away about my Blackie who’d just started singing.
Very nice half an hour after TT my wife came to me in the veranda to sit under the cherry and talk a bit and listen to the GreatTits feeding, pigeon nest and robins flying to and fro.
Listening bit by bit to a band that had awakened my interest that had recently done a gig in my home town.

f) Environment: (Outdoors :white_check_mark:.) Rain?
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

(Wow, managed a 3rd entry on this Sunday, due to drive - and also lovely rain etc. keeping my wife indoors)

2024-05-18 Saturday

Summary:

  • LDN Mar 21st- 3mg :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 20% (:x:), energy profile “slow”, TT not available, walking / cycling 25’ (:x:).
  • Creatine monohydrate Apr 9th- 2x5g for more slow energy.
  • Triggers: After the anaesthetic flare ended I can now push thru better, but a small flare at 18:20, dunno why. New bite annoying.
  • QCS at 6:00 :white_check_mark: and NSDR at 3:30 :white_check_mark:.
  • Thoughts: churning up a lot about how my positive attitude works, see template and next days. Spawned by people asking me back how this came about.
  • Feelings: Tension from problems lately relieving more and more.
  • Cheer: Can push thru better now. Music. Screaming laughter about… Encouragement to put further plant information sheets up. Found my akilwinter cream - where it should’ve been. Yup, the chick’s are off! Magpie cute sounds. Swift screaming parties. Marguerite, lavendere, soapwort,
LDN: Mar 21st- 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 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT not available, moving ➔ 80%/3-4 (✅), jackknives - better not atm cos I'm doing my back exercises directly before bed, but otherwise it'd be no or hardly a problem, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" (❌) and sleep 9h09, annoyed first by party people outside, plus peeing regularly, then 30' dozing, but NSDR at 3:30 helped ✅ and vQvCS: 6:00 ✅, "PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h 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): 9h09, 30' of that dozing, NSDR helped. ✅, QCS at :00 QCS = very quick very cold shower (first unnec due to LDN, but started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).

Sleep 23:15-9:25 4+5+2+3+30+12’, Sum: h45+9h25-(x5’=)56’ = 10h05-56’ =
23:15-‘
00:16 4‘ Managing to distract myself from a silly post on a forum by thinking about my garden plants
00:19 5‘
0:57 another pee 2‘
1:54 3‘ and another one, long
2:30 q6 30‘
3:34 after 30‘ dozing now NSDR helped
6:19-31 12‘ QCS cos I need to sleep till 8, ear plugs all night cos it was noisy outside first
-9:25‘

2) Watching TRIGGERS, esp. of exhaustibility. New bite next to my navel annoying, but not for sleep. Cut off bit of thumb was OK. Histamine foods: 20g goat cheese (✅), x specks of marmite (❌). Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around 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).

(3) DOCS: Click for latest (April 26th) details.)

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 med effects: Click for latest (Mar 21st) & next changes, and details...)

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 (✅)): Last seizure May 13th: 11 days without, last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 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 - May 13th (1) May 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, 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. May 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), Mar 21st- LDN 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-. Mar 21st- LDN 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: 92%

Lessons in self-care:
I spose now the anaesthetic’s worn off after 11 weeks I can now push thru strain and pain better without much of a backlash. BUT: 18:22 went to a shop, pushed thru, but feeling sick, dunno why.

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

  • 18:24 end of the walk going to a local barren area which had been planted with wild flowers last year, 3-4 types are already there, like some poppies, and lots of full blown crimson clover (like I had one last year).
  • 9:44 first marguerite blossoming
  • 21:54 all on balcony: lavender blossoms coming up, 30 small ones
  • big new ones, I’m guessing it’s (only, invasive) erigeron
  • the saponaria / soapwort blossoming,
  • carnations on balcony in pretty full bloom, 20 blossoms
  • 21:54 in garden: elderberry tree now in full bloom
  • white dog roses 70, red 30, yellow one wilting, peony disintegrated, .

b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Robins :white_check_mark: Blackbird :white_check_mark: Sparrows :white_check_mark: Nuthatches (hardly heard/seen now probably whilst breeding) :white_check_mark: Magpies :white_check_mark: Dunnocks (seldom now too) :white_check_mark: Great&BlueTits :white_check_mark: Jacks :white_check_mark: Chaffinch :white_check_mark: Chiffchaff :white_check_mark: Collared dove :white_check_mark: Blackcap :white_check_mark: Swifts 12x :white_check_mark: Birds bathing 3x :white_check_mark:) Latest / earliest robin song: …22:00 / 4:00… (10’ later/earlier since May 16th).
(Regular cheer, song/calls/seen: Wren Bullfinch Crows)
9:46 the GreatTit young ones are no longer to be heard chirping in their nesting box, but moving around, that confirms they’ve flown. 18:25 GreatTits less shy atm, praps the young ones? 19:44 GreatTits came up front with “all” kids, we thought 3, feeding and chirping to be fed, so nice, watched with wife.
15:26 Magpie was making cute sounds on the balcony railings and I managed to film thru loopholes without being discovered, sunbathing, mouth open, lying on the railings.
19:46 4 swifts in a screaming party directly above us, 10m at the most, maybe they’ll find our nesting boxes 21:15 swifts still flying
20:44 jackdaws noisy this evening for the first time, might be more now.
20:44 5 pigeons around us for a short time.
21:53 Heard my Blackie sing two phrases and no bedtime scolding.

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:
21:54 big brown bat came towards me, little ones further away.

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

  • The group I saw had played even has videos from that gig in our town put up on youtube, not nec good quality, but lets me come closer to (them) having been there. Lovely to listen to.
  • A good long laugh with my wife for 5‘ straight cos I’d left a birthday present for her in a place I sort of thought was hidden, but actually it was exactly where she had to hang the washing up. :roll_eyes: :rofl:
  • Repeated that screaming laughter together again at 22:00
  • very regular visitor of my neighbours at the moment said she enjoyed the „stories“ (= short information sheets) I put up front in the street about how those native vs. invasive plants are good for insects & birds) and asking & encouraging me to do a new one.

f) Environment: (Outdoors :white_check_mark:.) Rain: still not much, but tomorrow I hope.
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)
Foggies: (Body (:x:). Brain (:x:).) Found 2 creams I’d been looking for, one for weeks – lying directly where I expected them!?!

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

2024-05-19 Sunday

Summary:

  • LDN May 20th 3.5mg. Mar 21st- 3mg :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 20% (:x:), energy profile “slow”, TT n/a, jackknives :white_check_mark:, walking / cycling 20’ (:x:) - always have my bike with me nowadays.
  • Creatine monohydrate Apr 9th- 2x5g for more slow energy.
  • Triggers: no.
  • QCS at 9:00
  • Thoughts: It’s also having tried “(almost) everything” that’s putting cheer even more into focus.
  • Feelings: Deflected moodiness, lakes wonderful.
  • Docs: snse of balance (altho I’ve adjusted)
  • Cheer / Pic(s) of the Day: Cycle walk to our lakes: Mother Duck and my Wife hindered grey heron from going for ducklings. Grey goslings. 5’ listening to music now a regular. Rain!

Grey Heron after being chased away by a very adamant Mother Mallard Duck:

Grey Heron edging away from my Wife coming:


Mother Grey Goose and 5 Goslings preening:

Rhododendron blossoms, these ones hiding at the back of the woody area of my small garden, not sure which sort yet:

LDN: Mar 21st- 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 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT n/a, moving ➔ 80%/3-4 (✅), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" (❌) and sleep 8h15 ✅ (vQvCS: after getting up ✅, "PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h 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): 8h15, all deep ✅, QCS at :00 QCS = very quick very cold shower (first unnec due to LDN, but started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).

Sleep 23:52-8:27 4x5’, 0 deep doze. Sum: h08+8h27-(4x5’=)20’ = 8h35-20’ = 8h15.
23:40 after guinea pigs and back exercises… no:
23:52- got stuck noting which plants are best for insects, then back exercises
1:02 5‘
2:35 5‘ put sense of balance in my records
3:46 5‘
6:29 5‘
-08:27 to the sound of swifts and woodpigeons

2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: 20g goat cheese (✅), 0 specks of marmite. Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around 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).

(3) DOCS: I'll try to get sense of balance put in my reports for disability as well as fatigue. Click for latest (April 26th) details.)

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 med effects: Click for latest (Mar 21st) & next changes, and details...)

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 (✅)): Last seizure May 13th: 11 days without, last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 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 - May 13th (1) May 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, 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. May 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), Mar 21st- LDN 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-. Mar 21st- LDN 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: 92%

Having tried almost all viable treatments is another reason for focusing more on „coping“: reasons to be cheerful.

Lessons in self-care:
Wife’s worried about mother.
Mustn’t let chiding cos of getting in the rain get to me – she’d said now or never.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
18:31 Managing to watch short bits of a wild gardening seminar now
19:30 really big fat chestnut tree with 5 trunks always impressive
21:05 1 magnolia bud – is that an old or new one, is another flowering going to happen (like the rhododendron maximum did 3 buds last year), or did it just “get stuck”?

b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Robins :white_check_mark: Blackbird :white_check_mark: Sparrows :white_check_mark: Nuthatches :white_check_mark: Magpies :white_check_mark: Dunnocks :white_check_mark: Great&BlueTits :white_check_mark: Jacks :white_check_mark: Chaffinch :white_check_mark: Chiffchaff :white_check_mark: Collared dove :white_check_mark: Blackcap :white_check_mark: Swifts x :white_check_mark: Birds bathing x :white_check_mark:) Latest / earliest robin song: …21:50 / 4:00… (10’ later/earlier since May 16th) - last great tit 20’, last blackbird at 30’ and last robin at 50’ after sundown (21:25).
(Regular cheer, song/calls/seen: Wrens Bullfinch Great Woodpecker Ravens Crows Song thrush Heron Grey geese)
12:13 Now the GreatTits have flown out I had a look at the rhododendrons, forgetting the woodpigeon now nesting – looking thru binoculars I don’t even know this one, short thin white neck patch. Once sitting she isn’t budging anymore, so giving a rest.
12:13 swifts flying lower today
13:09 Blaxie looking in the long grass – good protection, praps even better than the cherry laurel I regretted a bit cutting back.
17:54 GreatTits a lot in the neighbour’s garden.
19:30 blackbird singing in the rain with a woodpigeon a yard or two away, a few houses later same again!
19:38 Grey heron tried to get ducklings twice, but the mother chased him off the 1st time, then my wife the 2nd time.
19:38 Moorhen on a nest keeps turning the eggs, mate brings more twigs to improve the nest, praps enlarge it, and feeding it.
19:48 50 woodpigeons and 1 raven on a local sports club field, probably looking for worms after the rain.
19:52 2nd heron, or the same on, nearby the bigger lake.
20:09 Grey goslings here, lots of mallard ducks, a female duck flying up in the air perpendicular 3m, amazing.
20:21 funny how the wild birds here at the lake aren’t disturbed by us or the camera, as opposed to in the garden
21:05 swifts in our streets aiming for house rooves, flying low
21:05 wife pointed out the difference between chaffinch rain call and the shorter more pointed call of the great woodpecker

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:
13:09 Watched bank vole on my insect palace, the deadwood pile next to the veranda
21:05 snail on the oxeyes pointed me to lots of slugs there too, but I think they didn’t do too much damage least year, doesn’t matter anyway, snails and slugs are important for the garden.

e) Human life: (TT laughter :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Art :white_check_mark: Music listening :white_check_mark: Nice talks :white_check_mark:)
17:16 art exhibition 15:15-40 boring for me/us, and couldn’t take a 2nd one.
21:05 Nice cycle walk together to our smaller and bigger lake, where we saw and heard all the birds.
22:03 putting listening to music back here, cos I’ve been enjoying it again, at least for a few minutes regularly now.

f) Environment: (Outdoors :white_check_mark:.) Rain! First only 2 buckets when 10 forecast, but later 8 more buckets. Next Tues/Wed.

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

1 Like

2024-05-20 Monday

Summary:

  • LDN May 20th- 3.5mg (Mar 21st-May 19th 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 20% (:x:), energy profile “slow”, TT “3:1”, cos I got lax (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Creatine monohydrate Apr 9th- 2x5g for more slow energy.
  • Triggers: 100g baked beans OK, bites playing up at night.
  • QCS at :00
    Thoughts 1: „All my life is cheerful except.…“ etc. {certain moments}. Even by conditions with the suffering they cause OTOH are OTO R2bC, they are both, they are not black or white, we can make things black or white. Everything has many facets to it and to a certain extent we are the blacksmith of our happiness as Germans say (Glückes Schmied).
    Thoughts 2: One prompt for these are cos someone at church had asked back how I came to my attitude.
    Thoughts 3: It’s the end of the anaesthetic flare that’s allowing me to reflect more about my situation / development. Always good to use those times before the start of the next flare. These may well come due to various events coming up in the next 2 months, work, doc and health officer appointments and also the next tooth fillings without anaesthetic. Last year May was the start of a long dangerous triggering period, it’s time of the year. But I’m not scared or even wary of these things happening, I just know they are a possibility and that I can do a bit more in the period before them, but also it’s good to prepare myself for the next one.
  • Thoughts 4: Magpie - Everything is Black and White
  • Feelings:
  • Cheer: 8:38 Grey Heron flying down our street. Grasses seeding beautifully. First blue fairy bellflower. Magpie sounds. Canada geese pair. 3x song thrush. Stroking goats. Nice talks & interactions.
  • Watch this: I’m not at all sure I took GABA A2+A3 Sunday evening, so might be seizure-prone. (And did get a slight one on Tuesday after table tennis.)

Fly on velvet - woolly honey grass.
(The favourite type of grass in my garden atm. Wish I could already identify the fly. I’ve only just discovered the yellow spots at the bottom middle of the pic, wonder what they are, I’ll try to find them tomorrow - = Friday - again.)

Red roses branching over pathway (A bit of kitsch offsets all the wildness. Need to do another one with the small flagstones on it.)

Single elderberry flowers fallen into wet grass, with honeysuckle leaves
(I first thought it was a new kind of flower. I love fallen petals. And grass. And raindrops. The small honeysuckle is a side shoot off a bigger one behind the red roses.)

Onion of Persia ‘Purple Rain’ close-up
Kitsch my neighbour b(r)ought for me, I like looking at things from all perspectives.

2 Canada geese in synchronicity
We had a Canada and grey goose pair a few months ago on our lake, but seems each has found a closer partner after all, just these haven’t got goslings yet.

2 Nanny Goats Gruff can’t get enough -
(all hands full to keep 2 women satisfied, as my wife joked)

2 mallard ducklings a-beak-playing, one watching them
(my wife pointed their playing out for me to film, lovely to watch their interaction on the video)

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 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 1:1, cos I got lax, after winning most points before we started counting, so probably 3:1 (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (✅), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" (❌) and sleep 7h48 ✅ (vQvCS at 3:00, then immediately adding NSDR sent me off for 3h (bites was the problem, stomach ache, very dry throat) ✅, "PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h 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): 7h48, all deep ✅, stomach ache, very dry throat - QCS at 3:00, very quick very cold shower (first unnec due to LDN, but started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).

Sleep 23:25-7:55 4+20+13+5’, 0 deep doze. Sum: h35+7h55-42’ = 8h30-42’ = 7h48.
23:25- after sorting out book offer, and computer problem.
1:03 4‘ sore throat, bit of a bite itch on right arm
2:22- 3 bites playing up
-2:41 20‘ had to get my oils from the cellar. Very dry throat
3:02 dozed cos of bites, so QCS
3:14 bit stomach ache, almond milk, end of QvCS
3:15 adding NSDR
6:19 5‘ only caught a few minutes of the NSDR. Pee. Lavender oil. NSDR again.
7:34 awake from the bites, having pressed it. Dunno what could help, I’d prefer to sleep another hour.2
7:40 6‘ cold water on itch, ear plugs cos of street blackbird’s beautiful song, drank, sore throat dry
7:55 alarm, only dozing 15‘

2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: 100g of baked beans OK again, even tho this time only skimming half the tomato sauce off. Bites playing up at night. 20g goat cheese (✅), 0 specks of marmite. Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around 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).

(3) DOCS: Click for latest (April 26th) details.)

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 med effects: Click for latest (Mar 21st) & next changes, and details...)

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 (✅)): Trying 0.5mg of LDN more, so 3.5mg. I’m not at all sure I took GABA A2+A3 Sunday evening, so might be seizure-prone. (And: Did get a slight one "tomorrow" = Tuesday 21st, after table tennis.) Last seizure May 13th: 11 days without, 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 - May 13th (1) May 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, 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. May 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: 92%

Lessons in self-care:

  • 14:28 made sure to write a mail to a colleague cos of my work issue before midday, I’ll be improving it bit by bit, again before midday, before sending it some time, no rush.
  • Losing 1 game of TT should have cost me (one-sided) a cappucino, but my (2nd) TT mate turned the one-sided one into a both-sided in the game after. The cappuccino does actually stress me a little bit, embarrassingly, cos of old social phobia type stuff, but I do detach pretty well from it. So what’s self-care about this? It’s my mate caring for himself and caring for me. Where I come into it is that the cappuccino wager stresses me. Not the money of course, it’s how to organize it, specially as we hardly meet. I spose I’d just have to bring him one to go from a local shop. I could talk with my wife how socially intelligent and nimble people - like her - would do this. She always knows that sort of stuff. :face_with_open_eyes_and_hand_over_mouth:

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

  • 10:46 now the grasses are seeding I can identify them at last. ryegrass, velvet grass, meadow grass (Weidelgrass, wolliges Honiggras, Rispengras). “Velvet” grass for #2 is nice, but I think I prefer the German “wooly honey grass”.
  • 11:07 First blue fairy bellflower at the back of the garden, where it was hard to get anything to grow last year!
  • 19:09 Love walking thru the paths in the lush grass. esp. Now I’ve learnt and got used to different lengths of grass being a good thing.
  • Been looking up which native plants are best for the insects.

b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Robins :white_check_mark: Blackbird :white_check_mark: Sparrows :white_check_mark: Nuthatches sometimes :white_check_mark: Magpies :white_check_mark: Dunnocks back again :white_check_mark: Great&BlueTits always :white_check_mark: Jacks increasing :white_check_mark: Chaffinch yep :white_check_mark: Chiffchaff yep, esp. in neighbourhood :white_check_mark: Collared dove usually :white_check_mark: Blackcap not quite every day :white_check_mark: Swifts 12x :white_check_mark: Birds bathing 4x :white_check_mark:) Latest / earliest robin song: …22:10 / 4:00… (10’ later/earlier since May 16th).
(Regular cheer, song/calls/seen: Wren Raven Crow Song thrush Above: Ducks? Heron? Peregrine? Grey goose?)

  • 8:38 Grey Heron flying down our street!
  • 11:07 Collared dove on roof next door, wooing and calling
  • 11:07 Keep surprising birds by moving too fast out of the cellar entrance,
  • 13:30 Magpie making cute sounds again, but Blackbird chased off, so not just cute… Everything is Black and White, everything is Magpie.
  • 13:30 Very loud clear song from my Blackie again this morning, taping him sometimes
  • 16:15 a pair of Canada geese without goslings in our smaller lake, and mallard ducks of course.
  • 16:27 2+1 raven, lots of woodpigeons on the fields, 15 Highlanders, a Great Woodpecker.
  • 18:53 magpie or more likely jay call.
  • 19:00 heard song thrush again after a long time
  • 19:09 GreatTit chicks in boxwood like the adults always, praps for the moth eggs
  • 19:39 another song thrush whilst collecting grass for the guinea pigs
  • 20:55 jacks are gathering on the antennae above our gardens a bit more in the evenings, this will increase till autumn.
  • 22:00 last blackbirds, but mine 21:35 or 40. Robins not yet, but bats. 22:05 now my robin started, got the whole arena for himself 22:06 neighbour robin is chiming in
  • 22:14 everyone quiet now, but my wife pointed out a song thrush still singing in the background, I think the one where I got the guinea pigs’ grass - always excited to hear one at home, which is only possible when all others are quiet, so very early and very late.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats every evening :white_check_mark: Bank voles always there, rustling or scuttling :white_check_mark: Insects: bees, bugs :white_check_mark:
When we visited the goats, I hesitantly started stroking the chief she-goat and then she taught me - by throwing my hand up - how/where she likes it, she loved lying her head in the palm of my hand and also “wrestling” - pressing towards each other. Once I’d put myself on the right side of her, I was allowed to stroke the other mothers and then the smaller ones too, she let them come.

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

  • 10:46 Enjoyed getting some housework done for my wife, in a good mood today.
  • 15:53 Wife dropped my old laptop, it’s good she’s worried, so she doesn’t get angry, :wink:
  • 15:53 Good laughs playing skip-bo cos my hidden rule not to use jokers if I am winning ended in me only having jokers which put me in a funny tight spot.
  • 18:53 at TT a lot of philosophical talk about mindfulness, positive thinking, radical acceptance and how to enjoy losing.
  • 18:53 many funny TT rallies to and fro, like where the ball just about reaches the table.
  • 18:53 Cute to see a mum and 3 boys on the playground, 2 boys were preening each others hair, looking round I saw the older boy was doing the same with his mum, nice to see how loving and caring they seemed.
  • Nice evening with wife

f) Environment: (Outdoors :white_check_mark:.) No rain, yearning for Wednesday.

  • Love the smells in my garden too, whether stinky manure-y or rose-y
  • Moon half coloured by clouds, bit of a halo: nice piece of creation art.

g) Body: (“Theoretical” energy 30% (:white_check_mark:).)
Foggies: (Body (:x:). Brain (:x:).)
18:56 brain getting foggy during talking and TT, whilst my body is totally OK, praps from adding the LDN – hope it won’t cause a problem tonight, or any other side effect.

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

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2024-05-21 Tuesday

Still didn’t catch up more today, Friday, cos lots of colleague mails before midday, vid talk with sis, collecting loads of rain water, watching webinar about proper insect gardens…

Summary:

  • LDN May 20th- 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 20% (:x:), energy profile “slow”, TT 2:2 (lost close) (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 25’ (:x:). Walking on clouds a bit for a few hours from LDN
    Seizure 18:57, after TT, probably from forgetting GABA yesterday. Taped talking during it, couldn’t say anything intelligible for slightly under 1 minute.
  • Creatine monohydrate Apr 9th- 2x5g for more slow energy.
  • Triggers: Nope, except forgetting GABA.
  • QCS at 3:30 (:x:)
  • Thoughts: Practicing ‘positive’ thinking further.
  • Feelings: Treating myself to bad sleep to get all that rain is gonna be worth it, cos it’s an exciting aim to get all 100 buckets full.
  • Cheer and pic(s) of the day: Colours. Peregrines. Screaming parties. 22 buckets of rain. First pink rose.

First pink rose amidst the white dog roses. Guess where all the bees and other insects are? Not on that cultivar rose. But on the 100 briar / dog roses around it, the cultivar’s base that has freed itself. I’m aiming have to educate myself and my wife, but those dog roses are something we both love. A gardner friend had told me to saw off the dog roses for more cultivars, but luckily I only did it to one of 2 or 3, cos it’s not at all what we wanted. Most professional gardeners don’t know anything about wildlife.

And where’s this (?)hoverfly sitting? On an elderberry leaf - again a native plant. How pretty. My sis last week used watching flies as her example of being mindful - not brushing it away, but looking at its beauty and watching how it washes itself.

LDN: 10:08 Feeling lighter from LDN, walking on clouds feeling, but only for a few hours, and gotta watch out cos that’s subjective, can’t push thru too much. 12:01 suddenly lightness gone, heaviness back slodging up stairs. 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 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 2:2, 2 won well, 2 lost only close (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (✅), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" (❌) and sleep 6h50, 1h31 of that deep doze/NSDR (❌) (vQvCS 3:30 ✅, "PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h 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): 6h50, 1h31 of that deep doze/NSDR (❌), QCS at 3:30 vQvCS = very quick very cold shower (first unnec due to LDN, but started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).

Sleep 23:25-7:29 18+5+26+5+20, 39+5+20+27 of that deep doze/NSDR. Sum: h35+7h29-(x5’=)74’ = 8h04-1h14 = 6h50, 1h31 of that deep doze/NSDR.
23:25-‘
1:15 18‘ getting rain
1:31 6.5 buckets, half a rain barrel of rain
1:31 heart’s been pumping a lot today, like in the ice cream parlour
1:32 back to bed
2:11 5‘ got up and whilst in bed I started dictating this, LOL. Seems to have stopped raining, so won’t need to get more rain
2:11 maybe should have used NSDR immediately, see if I need a QCS, yeah, both, maybe deep dozing, not sure
2:16 back to bed
3:00 realised where I got the burn on my right elbow, something in bed or collecting rain water.
3:00 get up or not? Didn’t hear much of the NSDR, so must have slept.
3:20 -20’ NSDR again, just woke up, but it was a dream of a bird coming towards me near the rubbish bins, sitting on a branch that dipped so much that it could just jump on to a rubbish bin, turned into a horse without the head.
3:23 rain app doesn’t show too much rain coming down now. Bit of a sore throat, dunno why. QCS?
3:33 only 4 buckets, getting used to this, was pretty quick, then QCS.
3:42 quirky strong pain in right wrist when in the cold shower, had the feeling it was really bad, hardly able to move hand, suddenly it was gone again, similar to a sharp pain in left foot going downstairs and to a pain in my clavicle this afternoon, where I already mentioned it’s a strange day, lots of weird pains coming up, wondering if that’s LDN. Clavicle would be an old pain, foot and wrist wouldn’t be typical. Also not just subjective, but dysfunctional. But also despite them being strong I had the feeling I could wait a bit and they’d stop and they did. Very weird.
3:44 It’s not just a pain, it’s a dysfunction as well, so I do have to be careful how I do things. Had one during table tennis as well, where I had to hold my arm playing, my mate asked if we should stop, I said no, just keep holding, and then it was OK again.
3:46‘ -26’ back to bed after cold shower. Feeling slightly as if I’m getting a cold, gotta watch out cos my wife nearly had one, and my TT mate did have one. So gargling with calendula essence, and still tea tree oil between toes and under sole of right foot.
4:33 5’ street blackbird loud in front of my room, and another, GreatTit too, robin of course. Sunrise 5:20 sunset 21:25
6:43 20’ no pee urge, but get up all the same, q6? Left voice note running 20‘ 7:02 yeah, q6, very curved IPP now.
7:29 that was just 27’ NSDR, no sleep, just deep rest, but kept on NSDR further, so half the night was NSDR, let’s see if that was anything like 8h including it.

2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: 20g goat cheese (✅), x specks of marmite (❌). Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around 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).

(3) DOCS: 1:31 heart’s been pumping hard a few times today, like in the ice cream parlour, night too occasionally, maybe I should tell my cardio, despite BP always being normal, but I guess it's 'just' my conditions, doesn't seem a worrying amount. Click for latest (April 26th) details.)

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 med effects: Click for latest (Mar 21st) & next changes, and details...)

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 (✅)): 18:57 Focal seizure (1) after TT wasn’t nec cos of it, but praps forgetting 2x0.6g and possibly 1-2x0.3g of GABA as well. Taped talking during the seizure: couldn’t say anything intelligible for slightly under 1 minute. 9:56 Bit on tongue, not as bad as bites or histaminey burnt tongue. (later: it hurting for 2 days. 3:42 quirky strong pain in right wrist when in the cold shower, had the feeling it was really bad, hardly able to move hand, suddenly it was gone again, similar to a sharp pain in left foot going downstairs and to a pain in my clavicle this afternoon, where I already mentioned it’s a strange day, lots of weird pains coming up, wondering if that’s LDN. Clavicle would be an old pain, foot and wrist wouldn’t be typical. Also not just subjective, but dysfunctional. So I do have to be careful how I do things. Had one during table tennis as well, where I had to hold my arm playing, my mate asked if we should stop, I said no, just keep holding, and then it was OK again. So despite them being strong and feeling like a real injury, I had the feeling I could wait in a relief posture a bit and they’d stop and they did. Very weird. Last seizure May 13th: 11 days without, 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 - May 21st (1) May 13th (1) May 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, 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. May 21st (1: after TT), May 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: 92%

Lessons in self-care:

  • Sorting out a phone problem wasn’t too stressful, didn’t have to talk to anyone.
  • Despite having been in all morning I’m OK cos windows open, lots of fresh air.
  • 11:51 So hot outside from moving for 5‘, so took longjohns off and 1 pair of socks, thought it might be LDN, but wife said it’s real heat.
  • 12:54 sent off 2 of the mails about work before midday. I was angered about colleagues/boss when my wife pointed out that he could have answered me a month ago.

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

  • 11:23 admiring all the variety of colours: lots of purple (tradescentia, new bell flowers, onion of Persia, pink of catawbiense rhododendrons ferrugineum rust-coloured alprose, which have added to the white of the elderberry, dog rose, fairy bell flowers, red from the red roses and alumroot, now greatly setting off the yellow that was the first one from the celandine and then the buttercups and wallflowers, the first with orange and red too, then the yellow one and purple honesty. On the basis of dark to light sorts of green and contrasting the red-brown leaves of the hazelnut and the new bigger hydrangea bush. Contrasts between long and short grass and between the new plants and the old stems I’ve just left, and are almost vanished or hidden anyway.
  • 19:13 Blackie blackbird in the juneberries, so that’s why they’re called that as well as serviceberries. The small berries are now visible looking thru my binoculars that I didn’t see last year and are turning from green to pink red at the rosehip-like tips and then thru. Still might be an Allegheny serviceberry, getting advice on that, but at least both are neophyte and neither invasive in Germany, both good for nature. Gotta watch out for the leaf colour in autumn, supposed to be bronze, but missed that.

b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Robins :white_check_mark: Blackbird :white_check_mark: Sparrows :white_check_mark: Nuthatches :white_check_mark: Magpies :white_check_mark: Dunnocks :white_check_mark: Great&BlueTits :white_check_mark: Jacks :white_check_mark: Chaffinch :white_check_mark: Chiffchaff :white_check_mark: Collared dove :white_check_mark: Blackcap :white_check_mark: Swifts 12x :white_check_mark: Birds bathing 2x :white_check_mark:) Latest / earliest robin song: …22:05 / 4:00… (10’ later/earlier since May 16th).
(Regular cheer, song/calls/seen: Wren Great Woodpecker Raven Crow Song thrush above: peregrines)

  • 8:44 raven (yesterday too), wife heard jay, GreatTits scolding
  • 11:29 Blackie singing near above me, not full-blown, but nice variations, Blaxie came out of the rhododendrons, shaking the whole bush first, scolding a little, Blackie continued singing.
  • 18:39 Peregrines visible around their tower, big female, the other half the size, so either very small male, or is that already one of the chicks, which have hatched, I read. Did I mistake the peregrine for a red kite recently?
  • 19:20 crow
  • 20:13 small screaming parties, 12 at most, but really close around cherry, on the first („2nd“) floor balcony almost in our height.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank voles 0. Insects: bees, bugs :white_check_mark:
e) Human life: (TT laughter :white_check_mark: 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: lots!

  • 22:57 small thunderstorm, quite a bit of rain, 2h rain barrel full, 12 buckets, very happy, must be >30 buckets now
  • Another 10 buckets at night – for me worth it, but lost a lot of sleep.

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

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Wednesday's stub

2024-05-22 Wednesday

Summary:

  • LDN May 20th- 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 20% (:x:), energy profile “slow”, TT : (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Creatine monohydrate Apr 9th- 2x5g for more slow energy.
  • Triggers:
  • QCS at :00
  • Thoughts:
  • Feelings:
  • Cheer:
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 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT : (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (✅), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" (❌) and sleep ✅ (vQvCS: ✅, "PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h 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): , all deep ✅, QCS at :00 QCS = very quick very cold shower (first unnec due to LDN, but started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).

Sleep :-: x5’, 0 deep doze. Sum: h+h-(x5’=)’ = h-’ = h.

2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: 20g goat cheese (✅), x specks of marmite (❌). Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around 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).

(3) DOCS: Click for latest (April 26th) details.)

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 med effects: Click for latest (Mar 21st) & next changes, and details...)

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 (✅)): Last seizure May 21st (1): 8 days without. 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 - May 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, 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. May 21st (1 after TT probably from forgetting GABA the day before) & 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: 92%

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: Robins :white_check_mark: Blackbird :white_check_mark: Sparrows :white_check_mark: Nuthatches :white_check_mark: Magpies :white_check_mark: (Dunnocks) :white_check_mark: Great&BlueTits :white_check_mark: Jacks :white_check_mark: Chaffinch :white_check_mark: Chiffchaff :white_check_mark: Collared dove :white_check_mark: (Blackcap) :white_check_mark: Swifts 12x :white_check_mark: Birds bathing 2x :white_check_mark:) Latest / earliest robin song: …22:05 / 4:00… (10’ later/earlier since May 16th).
(Regular cheer, song/calls/seen: Greenfinch? Wren? Bullfinch? Treecreeper? Great Woodpecker? Green woodpecker? Raven(s)? Crow(s)? Song thrush? Above: Ducks? Heron? Peregrine(s)? Grey goose?)

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank voles 0 (more back of garden now). Insects: bees, bugs :white_check_mark:
e) Human life: (TT laughter :white_check_mark: 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?
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

Thoughts about the blog’s development (version 4d):

Now focusing more on „making the best of it“, cos I know “all” my triggers, have tried “all” treatments.

My many examples illustrate how many reasons to be cheerful I’ve discovered - the garden things that weren’t important to me 2 years ago - or at least weren’t able to get thru to me. Now I’ve looked for things on my doorstep. And if I hadn’t got the garden it would have been something else, maybe nature in the neighbourhood. But here I can actively change Bad to Good by finding out what Creation needs.

Now I’m targeting and reducing any short times / events where I’m not cheerful.

*Lord, Thank You for giving me all this overflow of cheerfulness and happiness, turning Bad to Good."

template

2024-05-23 Thursday

Summary:

  • LDN May 20th- 3.5mg (Mar 21st- 3mg) :white_check_mark: for Energy “30%” :white_check_mark:, partly usable = 20% (:x:), energy profile “slow”, TT : (:white_check_mark:), jackknives :white_check_mark:, walking / cycling 25’ (:x:).
  • Creatine monohydrate Apr 9th- 2x5g for more slow energy.
  • Triggers:
  • QCS at :00
  • Thoughts:
  • Feelings:
  • Cheer:
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 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT : (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (✅), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" (❌) and sleep ✅ (vQvCS: ✅, "PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h 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): , all deep ✅, QCS at :00 QCS = very quick very cold shower (first unnec due to LDN, but started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).

Sleep :-: x5’, 0 deep doze. Sum: h+h-(x5’=)’ = h-’ = h.

2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: 20g goat cheese (✅), x specks of marmite (❌). Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around 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).

(3) DOCS: Click for latest (April 26th) details.)

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 med effects: Click for latest (Mar 21st) & next changes, and details...)

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 (✅)): Last seizure May 21st (1): 8 days without. 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 - May 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, 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. May 21st (1 after TT probably from forgetting GABA the day before) & 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: 92%

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: Robins :white_check_mark: Blackbird :white_check_mark: Sparrows :white_check_mark: Nuthatches :white_check_mark: Magpies :white_check_mark: (Dunnocks) :white_check_mark: Great&BlueTits :white_check_mark: Jacks :white_check_mark: Chaffinch :white_check_mark: Chiffchaff :white_check_mark: Collared dove :white_check_mark: (Blackcap) :white_check_mark: Swifts 12x :white_check_mark: Birds bathing 2x :white_check_mark:) Latest / earliest robin song: …22:05 / 4:00… (10’ later/earlier since May 16th).
(Regular cheer, song/calls/seen: Greenfinch? Wren? Bullfinch? Treecreeper? Great Woodpecker? Green woodpecker? Raven(s)? Crow(s)? Song thrush? Above: Ducks? Heron? Peregrine(s)? Grey goose?)

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel :white_check_mark:)
Bats :white_check_mark: Bank voles 0 (more back of garden now). Insects: bees, bugs :white_check_mark:
e) Human life: (TT laughter :white_check_mark: 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?
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