JayCS’s Fibro Blog

2024-07-04 Thursday

Summary:

  • LDN still slightly better :white_check_mark:. Jun 20th- 1.5mg :white_check_mark: for Energy ’30%’ :white_check_mark:, partly usable = 13% (:x:), energy profile ‘very slow’ to ‘slow’ :x:, TT 2:0 and kids. (:x:/:white_check_mark:), jackknives (:white_check_mark:), walking / cycling 20’ (:x:).
  • Triggers: Doc appts. May 29th: 9 days :x:, Jun 7th ?d :x:, Jun 10th :x::x::x:, Jun 26th :x: - went well :white_check_mark:, but all too much, not recovered. Bite improving (:white_check_mark:).
  • Last focal seizure: Jun 29th (2) (+9d :white_check_mark:).
  • Sleep (:white_check_mark:): Screen curfew late :x:, late bed cos of: blog (insects), feeding ':x:‘. QCS at 10:00 :white_check_mark:.
  • Fresh air: 21h :white_check_mark:.
  • Thoughts: Monday’s dream is making me cut off certain things I wanted to try.
  • Feelings: -
  • Cheer: Appreciating the many little things… New bumblebee, black with white tail – turned out on Sunday to be a tree bumblebee. And a beautiful spider I can’t identify that looks like a baseball…

Pic(k)s of the Day

= expanding happiness

Working with the grid command most of the time today. Easy: Just [grid] and with / before the grid.

But starting with the unspectacular, to me just as meaningful:

These are 3 things, moss and grass which is growing in the gaps between the concrete, something that last year didn’t look successful, but it’s getting there.
This is a new one, crescent-cup liverwort, a neophyte, but at least not invasive, and interesting:


These are ‘normal’ grasses, I just like the way they’re growing:

Unspectacular in that it’s ‘only’ a Western honeybee, but I got some nice results, and I haven’t posted one on the new oregano blossoms:

And this is the pretty behind of a spherical spider, the laptop ID is pointing me to wrong directions, nearest so far is a (wandering) crab spider:

Here the compass lettuce fell down cos of wind and it is after all growing in 2m height in a small gap in the pavement, so I quickly propped it with some long sticks from the deadwood insect palace and am hoping the tip of it will like many plants manage to keep blossoming (spoiler: it will):

Blurry maybe, but I’m all excited about this “new” bumblebee, pretty in black, so despite the white tail not a white-tailed bumblebee, it’s called a “new garden” or “tree bumblebee”.:

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

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

1) MAIN ISSUES: 9:02 everything fine outside, but once I come in I’m panting and feel heavy. 14:15 slightly nauseous from being able to move better and pushing thru the pain. 16:00 still OK, TT 2:0, fairly recovered, surprised now well, meeting kids at 16:15. Managed to carry grandkid for 30’’ as a greeting, that’s always a highlight for both, then ‘play’ 90’, not talking much myself, mainly mimicry – hurting, nauseous, not so much fatigued, fairly nimble still. Fresh air all the time today, last night all night and most of the day, 21h. Talking 10' ➔ 80%/4 (❌), music 5-30', depending ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 2:0 (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87% ❌ and sleep 7h35 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', with ‚8h rest‘, 4h very slow, 4h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.
SLEEP (click for tonight's details): 7h35, all deep ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:15-7:36 3+35+3+5’, 0 deep doze. Sum: h45+7h36-(x5’=)46’ = 8h21-46’ = 7h35.
23:15, late cos of insects and guinea pigs
0:20 3’
1:31-2:06 35’ unrest q7
4:00 3’ light, but 0 birds
5:31 taped, but aside from robin only a crow whilst getting up, blackbird very distant
-07:36 up

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

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

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

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

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

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

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

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

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

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

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

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

No ‘research’ today

Quality of life: 90%

Lessons in self-care:
21:19 about the pillar dream I had on Monday, my wife suggested that the pillar was work or my condition, so praps I should put several things aside where people are messing with me and it’s too much effort to mess back.

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

  • Maybe my blossoms are smaller, but I know the insects aren’t being treacherously attracted, but they’re really getting their money’s worth. Still got lots to look if I’m close, not so much if I’m further away.
  • 18:13 Coming back, compass plant had fallen down, so fastened it with sticks, the 30cm tip broken, hoping it’ll still be able to blossom, like often.

b) Birds:
Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Blackbird family less shy, quiet :white_check_mark: Robins short song :white_check_mark: Sparrows (quiet) :white_check_mark: Blackcap only at TT (:white_check_mark:) Swifts 10x :white_check_mark:, Magpies :white_check_mark: Jacks :white_check_mark:, bathing 10x/d (rain) :white_check_mark:, Crow :white_check_mark:, Great Tits & BlueTits, incl. “black” ones :white_check_mark:, Collared dove :white_check_mark:.
Latest / earliest robin song: …22:30/ <4:00…

(Regular cheer, song/calls/seen - Chaffinch :white_check_mark:, Chiffchaff :white_check_mark:, Wren :white_check_mark:, Great Woodpecker (:white_check_mark:), song thrushes nearby (0), Dunnocks 0, Nuthatches 0.

  • 8:24 crow flew, GreatTits in feeding bowl – is that OK? Pigeon hunched, found Blackie on the dawn chorus recording, blackbirds, singing: wren & chiffchaff.
  • 8:26 magpies, jack, crow cawed. 8:33 magpie on chimney next door, robin scolding a bit.
  • 11:26 GreatTit family.
  • 16:10 chiffchaff singing in cherry
  • 16:22 chaffinch singing next to shops
  • 18:45 saw chaffinch and baby robin when we were at the shops.
  • 19:07 high chirp since a few days, couldn’t find out, edit Sunday: found out it’s a chiffchaff call, by seeing him.
  • 22:32 swifts, maybe back after rain?
  • wife shared: Saw 2 woodpigeon babies in garden.

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

  • 12:24 is that a wood bumblebee? Sunday: No, a tree bumblebee. The app thought a stone bumblebee, but then it’d have a red tail.
  • 13:53 guinea pig rumbled at me when I started giving him something to eat, a sign of joyful greeting to his partner (who doesn’t usually reply loudly). Such a cheerful little chap, he really knows how to enjoy the life I’m giving him by feeding him.
  • 16:05 at last I’ve seen it really is squirrel scratching away in the cornel cherry – took pics, but didn’t work.

e) Human life: (TT laughter :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Music (:white_check_mark:))
f) Environment: (outdoors/fresh air :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

2024-07-05 Friday

Summary:

  • LDN Jun 20th- 1.5mg :white_check_mark: for Energy ’30%’ :white_check_mark:, partly usable = 14% (:x:), energy profile ‘very slow’ to ‘slow’ :x:, TT 2:1, easy, let win (:x:/:white_check_mark:), jackknives (:white_check_mark:), walking / cycling 20’ (:x:). Since Wedn evening (increasing creatine and praps recovering from the last appts) I’m better, more slow than very slow, pushing thru with less pain even tho I didn’t sleep 8h. Bed still too late, but working at it.
  • Triggers: Flare May 29th-July 3rd from strain of 4 doc appts, Jun 7th and 10th worst. 23:05 Fairly loose stools, like potatoes, the only unusual thing I ate today.
  • Last focal seizure Jun 29th (2) (+9d :white_check_mark:).
  • Sleep: Screen curfew late :x:, late bed cos of: blog, pigs ':x:‘. QCS at 10:00 :white_check_mark:.
  • Fresh air: 20h :white_check_mark:.
  • Thought 1: my kid reminded me that these are flares, and that’s dfferent to the ALS of a relative.
  • Thought 2: These pics are therapy / treatments, underlining what Merl @ModSupport replied above that this still still belongs in the subforum “symptoms and treatments”.
  • Self-care: Yes, I am doing a helluva lot, even tho it doesn’t feel enough
  • Feelings: -
  • Cheer: Appreciating the many little things… There’s now 3 young woodpigeons, goldfinch regularly outside shop, robin very close, 2 peregrines around tower nearby.

Pic(k)s of the Day

= expanding happiness
Words for these pics less necessary today…



I’m realising more and more why these are nicknamed devil’s paintbrush: hellfire colours! :imp: :smile_cat:



These are the hydrangeas that have real flowers in the middle, saw them on a cycle walk:


The snowy flies on this celandine are on the top of the leaves: Cos the stem had broken and they’d turned over…:
IMG_20240705_083250 Schöllkraut Blätter waren umgedreht, also waren die weißen Fliegen auf der Rückseite smaller
What a sweet little spider, in German ‘wooley wall jumping spider’:

LDN: After July 3th recovering from the 4 doc appts, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. click for effects/dosage (not under 4 Supps)

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

1) MAIN ISSUES - bit better since Wednesday 3rd 18:00: talking 10' ➔ 80%/3-4 (❌), music 5-30', depending ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 2:1, easy, let win (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 8h09 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts July 3rd with '7h rest‘, 3h very slow, 6h 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): 8h09, all except 10' deep ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-: x5’, 0 deep doze. Sum: h45+8h12-(30+3+6+4+5=)48’ = 8h57-48’ = 8h09.
23:15 bed after A3 & back ex
0:56 q6 30’
3:18 2nd
4:08 3rd, few robin bursts, 4:12 burning tongue all night, right back, 3 robins, blackbird in distance, think I’ll tape
5:36 4th
8:00 5’ should sleep another half hour, try
-8:12 2nd time, and now gut filling up, tick bite area itching again a little bit.

2) Watching TRIGGERS, esp. of exhaustibility. 23:05 Fairly loose stools, like potatoes, the only unusual thing I ate today. Flare May 29th-July 3rd from strain of 4 doc appts, Jun 7th and 10th worst. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Click for list Nov 7th 2022 to Feb 20th...."

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

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

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

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

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

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

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

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

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

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

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

‘Research’ today (that’s Mondaym 8th…)
After realising that creatine seems to be helping and reading that Chris Masterjohn recommends many people that need energy, esp. vegetarians, to take 3-5g of it per day, as creapure, I’m re-ordering it. Turns out that only creapure, made in Germany, can guarantee purity, all others, made in Asia, may only contain 1/3 creatine. Also found out that creatine malate which I’d read can be a good alternative, isn’t allowed yet in the EU, so I will not be switching.

Quality of life: 90%

Lessons in self-care:

  • Better look it in the eye that I’m spending 4-5h for guinea pigs, of that 2h for myself, and 3-4h on blog, plus a few rabbit holes. Part of me wants to do nothing, just look. But that’s just cos I get so carried away with insect identifying and feeding, still fighting for the balance.
  • 17:26 a 2nd dead young blackbird, stopped myself feeling responsible, just let it go.
  • Praps I can simplify the blog more?
  • Difficulty regulating heat today, overheating, air warmer than the lack of sun would suggest, praps that’s why the birds aren’t moving much today.
  • 23:05 wife procrastinating, so I sorted out the right camera, asking & searching online, guinea pigs, pic identifying, haven’t showered today, not sure when to – decide only if unrest at night.

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: Blackbird family less shy, quiet :white_check_mark: Robins short song :white_check_mark: Sparrows (quiet) :white_check_mark: Blackcap only at TT (:white_check_mark:) Swifts 20x :white_check_mark:, Magpies :white_check_mark: Jacks :white_check_mark:, bathing 10x/d (rain) :white_check_mark:, Crow :white_check_mark:, Great Tits & BlueTits, incl. “black” ones :white_check_mark:, Collared dove :white_check_mark:.
Latest / earliest robin song: …22:15/ <4:00…

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

  • 8:30 wife saw: 2 woodpigeon babies, I’ve now heard on the nest that a woodpigeon is nest-calling on the old nest. 12:12 Young Woodpigeon above me in the cherry. 12:24 tucking in his head, like sleeping, a feather-ball above me, like when sat on the nest. Short look when a young blackbird came past nervously, but then back, 20’ at least. 13:16 begging again, with wings flurrying, squealing. 13:25 wings, 2 young woodpigeons fed, parent, parent went cos of me moving, and left the 1+2 young ones.
  • 10:05 robin loud in east park, few yards from home
  • 11:35 Brilliant that the goldfinch that I got identified is in front of my local shop, so I can listen to it every time I go.
  • 12:15 chiffchaff in between, but no chaffinch
  • 14:00 very close female robin with white stripe on right wing and black spot under left eye whilst I was putting sunflower seeds in the feeding bucket on the balcony, 30cm, really, never been closer, 3x.
  • 16:44 peregrines flirting at TT, blackcap & chaffinch short.

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

e) Human life: (TT laughter :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Music (:white_check_mark:))
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

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

Simplified: Grid function :white_check_mark: using the [grid][/grid]-command.

Click for development/summaries and see profile...

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

2024-07-06 Saturday

Summary:

  • LDN Jun 20th- 1.5mg :white_check_mark: for Energy ’30%’ :white_check_mark:, usabiity increasing = 14% (:x:), energy profile from ‘very slow’ more to ‘slow’ :x:/(:white_check_mark:), TT TT 2:1 fairly easy (:x:/(:white_check_mark:), jackknives (:white_check_mark:), walking / cycling 20’ (:x:). Was it upping creatine helping me from Wednesday on?
  • Triggers: my stinging nettles don’t sting me, shop knackered me, an elderly woman in plight too. New pyjama top I suspect I won’t tolerate (Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst.)
  • Last focal seizure: Jun 29th (2) (+9d :white_check_mark:).
  • Sleep: Screen curfew late :x:, late bed cos of: blog, pigs ':x:‘. QCS at 9:00 (left out yesterday, actually) :white_check_mark:.
  • Fresh air: 21h :white_check_mark:.
  • Thoughts: -
  • Feelings: -
  • Cheer: Appreciating the many little things… The black areas of the Great&BlueTits are from moulting, not parasites! Goldfinch!

Pic(k)s of the Day

= expanding happiness … so exciting again today, therapeutic for me as always…

Clouds, traveller’s joy, great vs. small-flowered willowherb, herb Bennet, paintbrush, buttercup, compass plant, leaf-cutting bee, daddy-long-legs. (Reduced the ~100 pics/films to only 73… and of that only 14 pics selected):

I’m thinking of posting clouds first every day, cos it’s where I try to look first thing every morning, and it’s kind of a pre-condition of the day, even tho for me there’s no such thing as bad weather:



Graybeard? Old man’s beard? Nah, maybe from a distance when the flower spheres have developed. Traveller’s joy, yeah that’s the name. I’m so happy I’ve let this grow all over the garden, and not just the 2 sprays up in cherry and cornel cherry, so far up I can hardly see it:


*Now this is today’s biggest surprise for me, didn’t see it coming. Cos as all the many other willowherbs back and front are the small-flowered ones I thought this would be too. But instead it has “enormous” flowers. And then up came the fear it’s the invasive sort, the American/fringed/northern/purple-leaved willowherb… Esp. cos the flowers are so big. But nope, it’s kosher, yipppeee! In German it’s called ‘hairy’, haven’t looked why yet. In English kaporie tea, great willowherb (yeah, great it is, compared, see the small-flowered ones below), fiddlegrass and… codlins and cream. Wait, had that before, it’s a name given to the small-flowered ones too, just cos of this mixture of pink and cream in the blossoms. So what now, great codlins and cream, and small codlins and cream? Haven’t decided yet. But good to compare, so first 2 of the great and then 2 of the small flowered ones.


*I still keep forgetting what this newer one is called, but the fruiting head (a bit like that of buttercups) might help me at least recognise it. In English colewort or herb Bennet (St. Benedic’ts herb).

Repeating those hellish paintbrushes with devilish glee:

Have I overlooked the buttercups recently? Cos they’re sposed to blossom till August. Creeping buttercup, or creeping crowfoot, in German creeping cock’s foot:

Ah, the compass plant is doing its best to stand up against all adversity:

I thought it might be one of the flies (drone fly) mimicking a bee first, but no, now I think this is the leaf-cutter bee again, snuggling itself into the rough hawksbeard, so I couldn’t see if the tail is ‘right’. There’s now 100s of rough hawksbeard blossoms in the grass front and back and they’re attracting all kinds of butterflies and bees:

Had this harvestman type before, a female, but this male is striking with it’s dark legs, yellow joints and reddish body:

LDN: After July 3th recovering from the 4 doc appts (talks), the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. Click for effects/dosage (not under 4 Supps)

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

1) MAIN ISSUES: talking 10' ➔ 80%/4 (❌), music 5-30', depending ➔ 80%/3-4 (❌), white lips 70-80% (❌), TT 2:1 fairly easy, despite wind, slightly seizure-ish in the 3rd game, mate hinted losing last game praps cos the side was dirty with egg rests (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 7h52 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 7h52, all deep ✅, QCS at 9:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:30-7:54 x5’, 0 deep doze. Sum: h30+7h54-(4+22+3+3’=)32’ = 8h24-32’ = 7h52.
23:30 both procrastinated, wife reading, me trying to find out why the Great&BlueTits have black areas (moulting, it turns out)
0:43 4’ outer sock pairs on
1:41-2:03 22’ brushed teeth, unrest, so hanging, longsleeve is new one to try, not organic, I’m wary if I tolerate it. 1:50 can’t get the discomfort out of my body, so QCS. QCS and teeth in almost completely darkness now the street lights are always off. Few slight balance problems.
3:27 3’ 0q6
5:13 3’ open, 0 plugs, jacks
7:54 up

2) Watching TRIGGERS, esp. of exhaustibility. 17:29 even when I stroke against stinging nettles I don’t feel any itch, even less a sting, my TT-mate suggested I need it, something to do with histamine praps? 17:23 Knackered by 10’ of a different nearby shop with my wife, nothing special, as little talking and moving as possible, can’t do anything, not even feed, which shows what a strain the other way round is, feeding first means I need a break first. Everything’s taking longer, increased brain fog caused by increased body fatigue. 19:12 Going home from the shop we came across an elderly woman who’d driven into roadworks and needed help to get out. I soon realised that this plight of hers and the situation was too much for me, so I quickly left after 1’, so stressed that I got a headache and feverishness. 1:41 longsleeve is new one to try, not organic, I’m wary if I tolerate it. 1:50 Few slight balance problems (in the dark).Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Click for list Nov 7th 2022 to Feb 20th...."

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

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

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

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

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

4) UNDER CONTROL ✅ (attention necessary (✅)): At night and morning I read up Chris Masterjohn recommending 3-5g creatine (like I already posted), which might explain the slow energy 'jump' up from 13% to 14%... on Wednesday 18:00 after taking creatine at 15:00. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...

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

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

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

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

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

No ‘research’ today

Quality of life: 90%

Lessons in self-care:
9:52 forum rabbit holes. Fun, but too much time.

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

  • Clematis blossoming
  • Willowherbs in the middle of the pot area are turning out big-flowered, which is lovely, but I fear it’s the invasive form… nope… it’s not, yaaaay, a new one!

b) Birds:
Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Blackbird family less shy, quiet :white_check_mark: Robins short song :white_check_mark: Sparrows (quiet) :white_check_mark: Blackcap only at TT (:white_check_mark:) Swifts 20x :white_check_mark:, Magpies :white_check_mark: Jacks :white_check_mark:, bathing 10x/d :white_check_mark:, Crow :white_check_mark:, Great Tits & BlueTits, incl. ‘black’ moulting ones :white_check_mark:, Collared dove :white_check_mark:.
Latest / earliest robin song: …22:30/ 4:00…

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

  • 8:26 chaffinch, few swifts, woodpigeon nest calls, call as if blackbird practicing, sparrows hardly audible.
  • 19:12 goldfinch at the shops again.
  • 23:30 found out the black areas of the Black&BlueTits I posted (fuzzy) are the black lower ends of the feathers showing as they’re moulting.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel in cornel cherry :white_check_mark:)
Bats (:white_check_mark:) Bank vole(s) (:white_check_mark:). Insects: bees/wasps, flies, butterflies, bugs, spiders :white_check_mark:. Snails & slugs less :white_check_mark:.
15:57 despite gale force winds, butterflies are fluttering, and flirting, cabbage white at least one pair and some orange one.
17:41 redbrown squirrel seems smaller, maybe a young one?

e) Human life: (TT? :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Music (:white_check_mark:))
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

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

Simplified: Grid function :white_check_mark: (…when it works).

Click for development/summaries and see profile...

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

2024-07-07 Sunday

Summary:

  • LDN Jun 20th- 1.5mg :white_check_mark: for Energy ’30%’ :white_check_mark:, usabiity increasing = 14% (:x:), energy profile from ‘very slow’ more to ‘slow’ :x:/(:white_check_mark:), TT 1:2 from tension (:x:), jackknives (:white_check_mark:), walking / cycling 15’ (:x:).
  • Creatine 5mg.
  • Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst.
  • Last focal seizure: Jun 29th (2) (+9d :white_check_mark:).
  • Sleep: Screen curfew OK-ish - insects and ordered guinea pig stuff (:x:), late bed cos of: blog, pigs ':x:‘. QCS at 6:00 :white_check_mark:.
  • Fresh air: 20h :white_check_mark:.
  • Thoughts: -
  • Feelings: -
  • Cheer: Appreciating the many little things… Found out the cheep is chiffchaff’s call.
    Blaxie very near. More on moulting of the Great&BlueTits.

Cheer of the Week:
Birds: Discovering that the Great&BlueTits have been moulting, GreatTits are out on July 3rd, 3 young woodpigeons around, goldfinch nearby, peregrines “back”.
Plants: great willowherb, traveller’s joy & devil’s paintbrush blossoming, honesty seeding.
Animals: tree bumblebee, guinea pig gaining weight, Southern bush-cricket.

Pic(k)s of the Day

= expanding happiness
(14 of 85 pics + 3 vids)

Traveller’s joy again:


The horse mint that’s taken over that area from the suneyes/oxeyes is starting to blossom, looking forward to the more diverse insects it’ll attract:

A new whiter grass-veneer, the Latin name means pasture grass-veneer:

Hmm, this isn’t going to work, I don’t think?: Despite blurry pics, I’m trying to illustrate how this cader-bee catapults away backwards from a celandine blossom, 3x. Hmm… please use your imagination… (that sounds like school or summink, don’t it? :smile_cat: :roll_eyes:)

This tiny red worm has made me think. I’ve been wondering whether to remove all the larvae from a tub at the back of the garden, and conventional wisdom says so, if I want to reduce my bites. But I only want to reduce insects that bite, and leave the others for themselves, others and birds, how do I know? Well this red larva was a challenge, as the laptop app couldn’t help. But it turns out “red larvae” are used to feed fish, and via that I slowly found these are larvae of the “red dancing fly”, or “non-biting midge” - so I should have saved them… Oh well, next time. The frayed end of the “blood worm” is the head end:

LDN: After July 3th recovering from the 4 doc appts (talks), the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. Click for effects/dosage (not under 4 Supps)

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

1) MAIN ISSUES: talking 10' ➔ 80%/4 (❌), music 5-30', depending ➔ 80%/3-4 (❌), white lips 70-80% (❌), TT 1:2 (at 15:32) despite feeling hungry cos before eating. Fun, laughter, lots of funny balls, my mate tells me interesting stuff without me having to say much. I lost cos of a basic tension that stole energy & precision (moving/talking/counting 15%) (✅), moving ➔ 80%/3-4 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 8h39 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 8h39, all deep ✅, QCS at 6:00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:45-7:55 5+4+4+4+14’, 0 deep doze. Sum: 1h15+7h55-(x5’=)31’ = 9h10-31’ = 8h39.
22:45- bed
0:24 5’
1:24 4’
2:43 4’ (unrest)
4:50 4’
6:03 14’ birds, overheated, wet from new longsleeve, so QCS. 6:13 eyes closed, slightly lost balance 5-6x, esp. after QCS. Drank, Bed, plugs.
7:55 (8:12) feeling yucky again from longsleeve

2) Watching TRIGGERS, esp. of exhaustibility. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Click for list Nov 7th 2022 to Feb 20th...."

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

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

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

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

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

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

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

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

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

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

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

No ‘research’ today

Quality of life: 90%

Lessons in self-care:

  • Trying the new flannel longsleeve night top again didn’t work out.

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: Blackbird young ones less, parents quiet :white_check_mark: Robins short song :white_check_mark: Sparrows (quiet) :white_check_mark: Blackcap only at TT (:white_check_mark:) Swifts 20x :white_check_mark:, Magpies :white_check_mark: Jacks :white_check_mark:, bathing 10x/d :white_check_mark:, Crow :white_check_mark:, Great Tits & BlueTits, incl. moulting ones :white_check_mark:, Collared dove :white_check_mark:.
Latest / earliest robin song: …22:30/ <4:00…

(Regular cheer, song/calls/seen - Chaffinch :white_check_mark:, Chiffchaff :white_check_mark:, Wren :white_check_mark:, Great Woodpecker :white_check_mark:, song thrushes nearby 0, Dunnocks 0, Nuthatches 0.

  • 8:26 a Blaxie passed me, but came back, even 1m away, me making sure she doesn’t feel looked at.
  • 10:22 Great Woodpecker call
  • 10:22 but also a similar call, recorded 10:59, 11:03 etc., then at 11:08 it turned out to be a chiffchaff call, cos I saw a little brown bird, either chiffchaff or willow warbler, and could then find out which, after hoping to see.
  • 10:49 Crow in cherry, taped craw at 10:50 for 3’ till it flew away.
  • 15:32 TT: chiffchaff song way there & back, blackcap short, crow deeper, chiffchaff cheep at the back of the garden.
  • MoultingTits: It was yesterday and today that on a forum someone explained the black areas on the Tits are from moulting, the lack of protection being a reason for them to be shyer.
  • 17:18 Saw robin after rustling made me spy around the veranda corner with my phone-camera
  • 6:03 jack sounding a bit like that sound recently.

c) Animals: (guinea pig antics :white_check_mark:. Redbrown squirrel in cornel cherry :white_check_mark:)
Bats (0). Bank vole(s) (0). Insects: bees/wasps, flies, butterflies, bugs, spiders :white_check_mark:. Snails & slugs less :white_check_mark:.
Black flies hardest to identify. One sitting on my laptop makes me be careful…

e) Human life: (TT laughter :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Music (:white_check_mark:))
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

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

Simplified: Grid function :white_check_mark:.

Click for development/summaries and see profile...

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

2024-07-08 Monday

Summary:

  • LDN Jun 20th- 1.5mg :white_check_mark: for Energy ’30%’ :white_check_mark:, usabiity increasing = 14% (:x:), energy profile from ‘very slow’ more to ‘slow’ :x:/(:white_check_mark:), TT 2:1 (:white_check_mark:), jackknives (:white_check_mark:), walking / cycling 20’ (:x:).
  • Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. 1 bite turned out OK :white_check_mark:.
  • Creatine 5mg from 3rd on helped overcome the flare.
  • Last focal seizure: Jun 29th (2) (+9d :white_check_mark:).
  • Sleep: Screen curfew OK-ish (:x:), late bed cos of: blog, pigs, the moth :wink: ':x:‘. QCS at 5:00 :white_check_mark:.
  • Fresh air: 20h :white_check_mark:.
  • Thoughts: -
  • Feelings: -
  • Cheer: Appreciating the many little things… Big & little hedgehog!
    Body & brain fog improving (:white_check_mark:) (unless I’m strained/irritated by people talking).

Pic(k)s of the Day

= expanding happiness
(12 of 92 pics & 8 videos (30’))
Wall-lettuce blossom:

Golden ragwort blossoms:

Surprise 1 of the day, and week, an ‘imperial rove beetle’:


The ‘pasture grass-veneer’ again, better pic than last time:

Surprise 2 of the day, and week, and month, and year, a big hedgehog (scratching) and a littl’un, a hoglet (snorting):




Big one’s scratching himself a lot from lice, and has a white tick at the rear end, wish I could take and bathe:


Honeybee and cader-bee again:

LDN: After July 3th recovering from the 4 doc appts (talks), the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. Click for effects/dosage (not under 4 Supps)

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

1) MAIN ISSUES: talking 10' ➔ 80%/4 - shop 10' (wife did most), much worse than quiet moving ❌, not listening to music at the moment, so not sure, woodpigeon calls are usually my earworms/hooks (❌), white lips 70-80% (❌), TT 2:1, 3rd close, felt OK after (moving/talking/counting 15%) (✅), moving ➔ 80%/3-4 (❌) - not bad despite strain of health bills, supp & camera ordering this morning, balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 8h15 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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, 30' deep doze ✅, QCS at 5:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:15-8:00 4+4+3+4+12+3’, 30’ deep doze. Sum: h45+8h-(x5’=)30’ = 8h45-30’ = 8h15.
23:15-
0:40 4’ Beau lines
1:38 4’ Throat less dry cos of drinking more in the daytime?
2:53 3’
4:21 4’ robin
5:25-36 12’ jacks, 2-3 woodpigeons, 3-4 GreatTits with varying calls, unusual atm. QCS
7:25 3’ still dozing
-8:00

2) Watching TRIGGERS, esp. of exhaustibility. 1 bite turned out OK ✅. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Click for list Nov 7th 2022 to Feb 20th...."

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

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

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

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

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

4) UNDER CONTROL ✅ (attention necessary (✅)): 8th: Wonder if Creapure will cause loose stools if I take 5mg, as more concentrated, so better divide it up. Creatine 5mg July 3rd- helped overcome the flare, Creapure is the right form, malate has too little evidence. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

No ‘research’ today

Quality of life: 90%

Lessons in self-care:

  • Having the energy, I checked health bills, then found I can get cheapest Creapure locally, very rare, ordered the right camera. The strain of all this made me shaky, making feeding harder. 12:27 still feeling OK despite that, 5mg again.
  • Deleted blog voice note note, but I could attach the VN again, cos they’re still there. Wasn’t a foggy, it was just careless, or rather my mate says cos of sweat from the hot weather, so have to be more careful when putting the phone in my pocket, cos it’s doing things by itself, like phoning people, deleting, editing.

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: Blackbird family less shy, quiet :white_check_mark: Robins short song :white_check_mark: Sparrows (quiet) :white_check_mark: Blackcap only at TT (:white_check_mark:) Swifts 10x :white_check_mark:, Magpies :white_check_mark: Jacks :white_check_mark:, bathing 10x/d (chiffchaff? and Blaxie) :white_check_mark:, Crow :white_check_mark:, Great Tits & BlueTits, incl. “black” ones :white_check_mark:, Collared dove :white_check_mark:.
Latest / earliest robin song: …22:30/ <4:00…

(Regular cheer, song/calls/seen - Chaffinch :white_check_mark:, Chiffchaff :white_check_mark:, Wren :white_check_mark:, Great Woodpeckers (:white_check_mark:), song thrushes nearby (:white_check_mark:), Dunnocks 0, Nuthatches 0.
13:31 Keep disturbing the woodpigeon sitting where I want to go.
14:00 Magpie just got a peanut from neighbour’s bird food. Woodpigeon came close as if wanting to make him go. Standing behind beech is a fairly good hiding place.
16:45 peregrine, blackcap and chiffchaff all calling at TT, not seen.
17:27 back in garden a woodpigeon had made itself comfy on the veranda roof, chiffchaff in ivy, hedgehog furrowing in rhododendron, so I went back to the front.
18:32 Got bird calls confused, it was ‘only’ a chaffinch I thought was a willow warbler.
18:32 chiffchaff in yew, 18:39 in Boston ivy.
18:35 wren, wren bathing this morning, too.
19:38 a Blaxie feeding on balcony 1m from my wife, I disturbed unwittingly.
20:44 300 jacks flew over us in groups of 10, so our local group has now grown from all the migrated ones.

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

  • 12:21 Big and smaller hedgehog! Smaller one under giant boxwood, then under the rhododendrons bigger one came and greeted the little one with a surprising chatter (German: keckern) like a magpie, wish I’d got my camera on earlier, cos on many pages where they list 10+ sounds or any youtube videos this sound is not on it. When they came together the little one puffed and they had their snouts close a lot of the time. The bigger one was quiet, but after a while scratched a lot, and there was an enormous white tick on the right of the tail (next day this was black and even larger). I filmed 21’ till the bigger one went to the back, and later another 1’ when they were at the front again together. The littl’un alone still huffing and puffing.
  • 13:31 quite a few butterflies.
  • 18:32 Dark mouse, is that a darker bank vole or a common vole / field mouse?
  • 18:32 hedgehog rustling?
  • 23:04 took a pretty moth outside for my wife, but for better pics to identify it, I’d’ve needed my 2nd torch phone with me.
  • 23:04 No insects, but loads of (Spanish) slugs, altho it’s not moist, most are near my water places tho.

e) Human life: (TT laughter :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Music (:white_check_mark:))
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

Foggies: (Body (:white_check_mark:). Brain (:white_check_mark:).) Improving :white_check_mark:.

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

Tuesday's stub

2024-07-09 Tuesday

Summary:

  • LDN Jun 20th- 1.5mg :white_check_mark: for Energy ’30%’ :white_check_mark:, usabiity increasing = 14% (:x:), energy profile from ‘very slow’ more to ‘slow’ :x:/(:white_check_mark:), TT : (:x:), jackknives (:white_check_mark:), walking / cycling 20’ (:x:).
  • Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst.
  • Creatine 5mg from 3rd on helped overcome the flare.
  • Last focal seizure: Jun 29th (2) (+9d :white_check_mark:).
  • Sleep: Screen curfew late :x:, late bed cos of: blog, pigs ':x:‘. QCS at 10:00 :white_check_mark:.
  • Fresh air: 20h :white_check_mark:.
  • Thoughts: -
  • Feelings: -
  • Cheer: Appreciating the many little things…

Pic(k)s of the Day

= expanding happiness

LDN: After July 3th recovering from the 4 doc appts (talks), the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. Click for effects/dosage (not under 4 Supps)

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

1) MAIN ISSUES: talking 10' ➔ 80%/4 (❌), music 5-30', depending ➔ 80%/3-4 (❌), white lips 70-80% (❌), TT : (moving/talking/counting 15%) (✅), moving ➔ 80%/3-4 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep h ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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 (22 issues under control).

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

2) Watching TRIGGERS, esp. of exhaustibility. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Click for list Nov 7th 2022 to Feb 20th...."

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

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

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

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

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

4) UNDER CONTROL ✅ (attention necessary (✅)): Creatine 5mg July 3rd- helped overcome the flare, Creapure is the right form, malate has too little evidence. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

No ‘research’ today

Quality of life: 90%

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

b) Birds:
Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Swifts 20x :white_check_mark: Jacks 300 :white_check_mark:, all the rest quieter: blackbird (less shy) :white_check_mark: Robins :white_check_mark: Sparrows :white_check_mark: Magpies :white_check_mark: bathing 10x/d :white_check_mark:, Crow :white_check_mark:, Great Tits & BlueTits :white_check_mark:, Collared dove :white_check_mark:, Blackcap always short at TT (:white_check_mark:).
Latest / earliest robin song: …22:30/ 4:15…

(Regular cheer, song/calls/seen - Chiffchaff :white_check_mark:, Wren :white_check_mark:, often Chaffinch :white_check_mark:, Great Woodpeckers 0, song thrushes nearby 0, Dunnocks 0, Nuthatches 0.

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

e) Human life: (TT laughter :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Music (:white_check_mark:))
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

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

Simplified:

Click for development/summaries and see profile...

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

template

2024-07-10 Wednesday

Summary:

  • LDN Jun 20th- 1.5mg :white_check_mark: for Energy ’30%’ :white_check_mark:, usabiity increasing = 14% (:x:), energy profile from ‘very slow’ more to ‘slow’ :x:/(:white_check_mark:), TT : (:x:), jackknives (:white_check_mark:), walking / cycling 20’ (:x:).
  • Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst.
  • Creatine 5mg from 3rd on helped overcome the flare.
  • Last focal seizure: Jun 29th (2) (+9d :white_check_mark:).
  • Sleep: Screen curfew late :x:, late bed cos of: blog, pigs ':x:‘. QCS at 10:00 :white_check_mark:.
  • Fresh air: 20h :white_check_mark:.
  • Thoughts: -
  • Feelings: -
  • Cheer: Appreciating the many little things…

Pic(k)s of the Day

= expanding happiness

LDN: After July 3th recovering from the 4 doc appts (talks), the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. Click for effects/dosage (not under 4 Supps)

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

1) MAIN ISSUES: talking 10' ➔ 80%/4 (❌), music 5-30', depending ➔ 80%/3-4 (❌), white lips 70-80% (❌), TT : (moving/talking/counting 15%) (✅), moving ➔ 80%/3-4 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep h ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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 (22 issues under control).

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

2) Watching TRIGGERS, esp. of exhaustibility. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Click for list Nov 7th 2022 to Feb 20th...."

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

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

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

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

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

4) UNDER CONTROL ✅ (attention necessary (✅)): Creatine 5mg July 3rd- helped overcome the flare, Creapure is the right form, malate has too little evidence. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

No ‘research’ today

Quality of life: 90%

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

b) Birds:
Every day cheer, song/calls/seen: Woodpigeons :white_check_mark: Swifts 20x :white_check_mark: Jacks 300 :white_check_mark:, all the rest quieter: blackbird (less shy) :white_check_mark: Robins :white_check_mark: Sparrows :white_check_mark: Magpies :white_check_mark: bathing 10x/d :white_check_mark:, Crow :white_check_mark:, Great Tits & BlueTits :white_check_mark:, Collared dove :white_check_mark:, Blackcap always short at TT (:white_check_mark:).
Latest / earliest robin song: …22:30/ 4:15…

(Regular cheer, song/calls/seen - Chiffchaff :white_check_mark:, Wren :white_check_mark:, often Chaffinch :white_check_mark:, Great Woodpeckers 0, song thrushes nearby 0, Dunnocks 0, Nuthatches 0.

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

e) Human life: (TT laughter :white_check_mark: Skip-Bo :white_check_mark: Wife :white_check_mark: Music (:white_check_mark:))
f) Environment: (outdoors/fresh air :white_check_mark:.)
g) Body: (“Theoretical” energy 30% (:white_check_mark:).)

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

Simplified:

Click for development/summaries and see profile...

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