JayCS’s Fibro Blog

[JayCS]

2024-11-14 Thursday

Summary:

• Specific notes today: 20:01 someone on bird blog is getting on my nerves again. Almost caused seizure. But my wife has the feeling I’m better atm. Curfew OK-ish.
• Changed hours of fresh air from 20h to 18h, cos as colder my wife is in more, so I have to be too. That’s often 4h in the evenings and 2-4h spread over the day, starting November (same December).
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew = (), late bed cos of: wife, photos, pigs (). Sleep ().
• Biggest issues: Usable energy 16% (), energy profile more ‘slow’ (), 11:09 TT 2:2, won 1st + 4th - all close. (()). Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): 70.1kg .
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Tried intermittent dosing, leaving out the 1.5mg on I think Oct 16th, 18th, 20th and 22nd, and guessing the seizure-“attacks” are from that. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-.
• Last focal seizure: Oct 22nd (+11d) (praps from intermittent dosing of LDN the past 6 days?).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Dunnock

Bit gory again (like when humans eat chickens…)

Short-toed tree-creeper

Great woodpecker

Woodpigeon

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 2:2, won 1st + 4th - all close (moving/talking/counting 15%) (✅), talking/listening 10' ➔ 80%/4 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (✅), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 9h06 ✅ ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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): 9h06 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:18-7:35. Sum: 1h42+7h35-(4+4+3=)11’ = 9h17-11’ = 9h06, 0’ of that deep doze.
22:18- 1:36 4’ 3:57 4’ 5:52 3’ -7:35

2) Watching TRIGGERS, esp. of exhaustibility. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

(3) DOCS: 3) Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 22nd (+11d), and before that feeling seizure-prone a few days, maybe from intermittent LDN 16th-22nd ❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~18h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

Happy Christmas! Yup, I’m back… - been concentrating on paper work and getting a site/forum running better, then for relaxing looking thru pics the next days and not so much pinning down notes. Should be catching up quicker now. Not rushing myself

2024-11-15 Friday

Summary:

• Specific notes today: 10:44 TT 0:3 → 1:3 → pain 5. 12:12 Still not feeling particularly good after TT, altho I did sleep longer today. 12:22 Was carrying a 25kg package 1 minute overdoing it? Doing 32 jackknives most evenings now. 15:15 managed to survive talking for 15’ by jittering my feet and pressing myself, but still need recovery time. 15:25 Thoughts almost triggering seizure: every time I have to go down 2 levels, distract, a bit like in hypnosis. Evening OK, did quite a bit, very seizure-ish, every few minutes I have to distract from trigger thoughts/impulses setting off a seizure. 3:49 tongue hurting all the time. 7:15 Woke up with helmety headache, so again histamine, but don’t know what, frostbite on right 2nd toe is very dark underneath, but no longer itchy or hurting.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew, bedtime, sleep .
• Biggest issues: Usable energy 16% (), energy profile more ‘slow’ (), TT 1:3 (()). Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): 72.4 kg ().
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Tried intermittent dosing, leaving out the 1.5mg on I think Oct 16th, 18th, 20th and 22nd, and guessing the seizure-“attacks” are from that. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-.
• Last focal seizure: Oct 22nd (+11d) (praps from intermittent dosing of LDN the past 6 days?).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Blackbird - same pic in varying detail/closeness

Peregrine

Yellow-necked (field/wood) mouse jumps thru birdhouse

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 1:3 (moving/talking/counting 15%) (✅), talking/listening 10' ➔ 80%/4 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (✅), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 8h19 ✅ ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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): 8h19 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:36-7:15. Sum: 1h24+7h15-(4+4+4+4+4=)20’ = 8h39-20’ = 8h19, 0’ of that deep doze.
22:36
23:31 4’ passersby so closed 1 window.
0:21 4’ Still loud despite ear plugs, so closed another window, but woke up cos of OAB.
1:53 4’ Ear plugs out, but in that moment someone fires off 20 bangers, which I wouldn’t have heard with plugs in. Still 1 window open, ear plugs in.
3:49 4’ Party passersby, tongue hurting all the time, dunno what from, ear plugs
5:50 4’ plugs out, windows open 5:53 audio
7:21 up 7:15
7:46 72.4 kg helmety headache, so histamine, but don’t know what, right 2nd toe is very dark underneath, but no longer itchy or hurting.

2) Watching TRIGGERS, esp. of exhaustibility. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

(3) DOCS: 3) Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 22nd (+11d), and before that feeling seizure-prone a few days, maybe from intermittent LDN 16th-22nd ❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~18h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

Big pic this one, that also took a while to work thru…

2024-11-16 Saturday

Summary:

• Specific notes today: 9:05 talking 10-15’ with friend of wife’s tough. 17:13 So seizure-prone that I’m getting used to distracting non-stop. Up GABA? Related to Histamine issue? Tongue still hurting: food? But what? Been avoiding hard cheese so much I needed to throw some away. 22:51 Researching the rats and file transfer. After better curfew.
  23:04 Lanolin wool around toes, bit better: praps cream is better than wool. Tongue still hurting, so taking +1 GABA, and bigger.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew (), bedtime (), sleep ().
• Biggest issues: Usable energy 16% (), energy profile more ‘slow’ (), TT ? (()). Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): ? kg.
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Tried intermittent dosing, leaving out the 1.5mg on I think Oct 16th, 18th, 20th and 22nd, and guessing the seizure-“attacks” are from that. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-.
• Last focal seizure: Oct 22nd (+11d) (praps from intermittent dosing of LDN the past 6 days?).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Big pic day again today

Robin

Magpie in wind

Magpie sitting with and ranting at crow till crow buzzes off, then magpie

Great tits

Black-headed gull over/on lake

Carrion crow

Mallard duck group with black-headed gull feeling at home

Grey heron

Black-headed gulls

Blue tit

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT ? (moving/talking/counting 15%), talking/listening NOW ➔ 80%/4 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (✅), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 7h37, ? of that deep doze (✅) ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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): 7h37, ? of that deep doze (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:04-7:20. Sum: h56+7h20-(5+24+10=)39’ = 8h16-39’ = 7h37, ? of that deep doze.
23:04- Lanolin wool around toes, bit better: props cream is better than wool. Tongue still hurting, so taking +1 GABA, and bigger.
2:29 5’ creaming hands.
5:04 10’ passersby. → Q5. 5:28 Make sure to close laptop.
6:27 woke up from ‚the’ siren. 6:36 trying to sleep.
-7:20 up and out.

2) Watching TRIGGERS, esp. of exhaustibility. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

(3) DOCS: 3) Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 22nd (+11d), and before that feeling seizure-prone a few days, maybe from intermittent LDN 16th-22nd ❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~18h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-17 Sunday

Summary:

• Specific notes today: 15:30 TT 2:2, lost easily, won only when mate played left-handed too. Seizure-ish, wondering whether it might be good to let the seizure come once, to get it to rest? Tongue hurting a lot all night, can see spot. Right foot still has a dark red spot, I think frostbite, so best upload pic to dermatologist. 0:25 5 bites upper inner thighs, oils on, 2 similar on right forearm below wrist: eucalyptus oil.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew, bedtime, sleep: ().
• Biggest issues: Usable energy 16% (), energy profile more ‘slow’ (), TT 2:2 (()). Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): 71.1 / 71.7 / 71.9kg .
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Tried intermittent dosing, leaving out the 1.5mg on I think Oct 16th, 18th, 20th and 22nd, and guessing the seizure-“attacks” are from that. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-.
• Last focal seizure: Oct 22nd (+11d) (praps from intermittent dosing of LDN the past 6 days?).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
Woodpigeon

Squirrel

Female Dunnock

Caught Great Woodpecker at the edge of a snap after all

One last red rose

Feather from the woods

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 2:2, but only winning when mate also played left-handed (moving/talking/counting 15%) (✅), talking/listening 10' ➔ 80%/4 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (✅), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 8h29 ✅ ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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): 8h29 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:21-6:59. Sum: 1h39+6h59-(4+5+=)9’ = 8h38-9’ = 8h29.
22:21 tog so windows shut. Tongue hurting can see spot. Right foot still has a dark red spot, so best upload pic to dermatologist.
0:25 4’ deep. 5 bites upper inner thighs, oils on, 2 similar on right forearm below wrist. Tongue still hurting. 0:26 opened windows.
3:00 5’ oils, checking teeth.
-6:59 up. 71.1 / 71.7 / 71.9

2) Watching TRIGGERS, esp. of exhaustibility. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

(3) DOCS: 3) Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 22nd (+11d), and before that feeling seizure-prone a few days, maybe from intermittent LDN 16th-22nd ❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~18h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-18 Monday

Summary:

• Specific notes today: 10:25 TT ?3:2, but 1 left to left. 22:38 +3 Bites. Online derm said chilblains, need to check if vasculitis. Bites maybe flea, not sure, just recommended antihistamine, so I’ll carry on with cold showering and eucalyptus. Bite itch starts after a few minutes of waking, so tried not to get up just cos of being more awake and that helped.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew, bedtime, sleep ().
• Biggest issues: Usable energy 16% (), energy profile more ‘slow’ (), TT 3:2 (()). Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): ? kg.
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Tried intermittent dosing, leaving out the 1.5mg on I think Oct 16th, 18th, 20th and 22nd, and guessing the seizure-“attacks” are from that. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. — As jitter is improved, I’ll change () to (), like tension.
• Last focal seizure: Oct 22nd (+11d) (praps from intermittent dosing of LDN the past 6 days?).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Blackbird on root sculpture

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT ?3:2 (moving/talking/counting 15%) (✅), talking/listening 10' ➔ 80%/4 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (✅), stiff (✅), nimble (✅), tense/jittery (✅), EXHAUSTIBILITY 84% ❌, SLEEP 8h14 ✅ ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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): 8h14 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:43-7:12. Sum: 1h17+7h12-(4+6+4=)15’ = 8h29-15’ = 8h14.

• 22:43- 1:05 4’ bites OK 2:14 6’ woken by new itch at back of left ankle, so oil, closed first window last break cos of sore throat. 2:18 lanolin cream on chilblain cos forgot. 4:07 4’ bite itch oil. -7:12 Bite itch starts after a few minutes, so tried not to get up just cos of being more awake and that worked.

2) Watching TRIGGERS, esp. of exhaustibility. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

(3) DOCS: 3) Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 22nd (+11d), and before that feeling seizure-prone a few days, maybe from intermittent LDN 16th-22nd ❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~18h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-19 Tuesday

Summary:

• Specific notes today: 11:31 TT with 2nd mate in rain so wet and left-handed lost closely twice. 11:32 putting in iron feelings to keep feet warm, working well. Slit my finger at around 14:00 by falling on a rake, „no“ pain, lot of cortisol, just a bit of dull pain sometimes, hope I’ll tolerate the surgeon’s local anaesthesia better than that of the dentist, worse is having to get a tetanus shot (if possible only tetanus to reduce the risk of issues) and all the doc time, surgeon today and again plus GP tomorrow. Injury itself OK, but fatigue flare. Bites annoying at night, but only up twice.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew, bedtime, sleep .
• Biggest issues: Usable energy 16% - 8% ( ➔ ), energy profile ‘slow’ turning to VERY slow after slitting my finger ( ➔ ), TT 0:2 (). Music 5’ ➔ pain of 5 , people 10’ 4 ( ➔ ). Weight (ideally 80kg): ? kg.
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better.
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Tiny feather

a

Still fresh-looking cuttings from a neighbour is sometimes rummaged in for insects by blackbird - easier to tidy up than when they look in moss.

h

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 0:2 (moving/talking/counting 15%) (❌), talking/listening NOW 10' ➔ 80%/4 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-5 (❌➔❌❌), balance (❌), body fog (❌), 0 jackknives ❌, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (✅), stiff (❌), nimble (❌), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ➔ 92% ❌, SLEEP 8h51 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'slow‘ ➔ 'very slow' with 10h rest, 4h very slow, 2h slow, 0h medium/quick.

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): 8h51 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:39-7:40. Sum: 1h21+7h40-(5+5+=)10’ = 9h01-10’ = 8h51.
22:39- OK considering, oil on bites, changed night leggings in case the bites are from insects in that.
1:55 5’ deep sleep except small break. Now bites worse, so spraying oil.
4:25 5’ oil, deep. 4:26 wool on right tennis elbow, doubt it’ll help.
-7:40? deep , closed 2nd window too.

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger today Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

(3) DOCS: 3) Surgery with tetanus for slit finger today. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~6h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body, brain & jittery ( ➔ ))
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-20 Wednesday

Summary:

• Specific notes today: 12:48 3x docs: GP about chilblains/?vasculitis and insect bites / surgeon for finger bandage change, everything OK / GP tetanus plus diphtheria. Can take bandage off in 2-3 days, stitches out in 10 days. Pain is dull pain all over 5-6, can’t go outside, cos I feel too cold. In the evening I felt good enough for everything: pigs, shops (on foot).
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew, bedtime & sleep .
• Biggest issues: Usable energy 8% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-.
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better.
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Dunnock

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 0 jackknives (❌), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 92% ❌, SLEEP 8h48 ✅ ('PPA‘: 3 ❌). Energy profile: 'rest/very slow‘ with '10h rest‘, 5h very slow, 1h slow, 0h medium/quick.

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): 8h48 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:19-7:15. Sum: 1h41+7h15-(4+4+=)8’ = 8h56-8’ = 8h48.

• 22:19- 1:53 4’ 4:48 4’ -7:15 up. Closed 1 window per break cos of sore throat. 71.6 8:14 slept deeply, bites aren’t annoying anymore. Hungry the past few days, maybe I’m not eating well.

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Wound check and tetanus, 3 doc appts for slit finger Nov 20th. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~12h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-21 Thursday

Summary:

• Specific notes today: 8:57 Can’t manage to be outdoors anymore cos of the injury and hassle, sick kaputt, so QoL down to 80-70%, pushing thru a bit too much. 22:20 Alternately knackered for a long time, very short stints in garden and doing things. Stayed in in the evening, skip-bo. Stomach pain regularly at night, and more hunger in the daytime, praps from too sour apples, have to be careful with them. Is peanut butter triggering histamine or adding to others?
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew, bed & sleep ().
• Biggest issues: Usable energy 8% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-.
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better.
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Dunnock again

Christmas cactus - stopped blooming before Christmas, but 9 of 13 flowers made it this year, better than only 3 or so last year…

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 0 jackknives (❌), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 92% ❌, SLEEP 8h47 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 10h rest, 4h very slow, 2h slow, 0h medium/quick.

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): 8h47 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:25-7:26. Sum: 1h35+7h26-(5+5+4=)14’ = 9h01-14’ = 8h47, ? of that deep doze.

• 22:25- 2:34 5’ OK, closed 3 windows 4:38 Stomach pain (regularly at night, more hunger in the daytime), props from too sour apples, have to be careful with them. Is peanut butter triggering histamine or adding to others? Opened 1 window 6:19 Closed all windows. -7:26

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Wound check and tetanus, 3 doc appts for slit finger Nov 20th. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 75% (cos of not being able to be outdoors long)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~12h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-22 Friday

Summary:

• Specific notes today: 17:39 I guess my energy is around 6-8%, I mean I can move around using my slow energy, but comparing TT time: 40’ = 16% energy, now I could only manage 4’ = 2%. Night: energy still <10%. but managed 32 jackknives, weird! lanolin cream for chilblains. Listening to bird song made my sleep shallower towards the morning.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew & late bed cos of: me (). Sleep still OK ().
• Biggest issues: Usable energy 8% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-.
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better.
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Dunnock (male I think) once again, on the balcony once for over half an hour and often

Female Blackbird on balcony

Chaffinch a bit dark, but I like the wind in its ‘hair’

Sow thistle still blossoming in November! I wish mine would.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 32! jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 92% ❌, SLEEP 8h07, 30' of that deep doze (✅) ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 10h rest, 4h very slow, 2h slow, 0h medium/quick.

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): 8h07, 30' of that deep doze ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:25-7:44. Sum: h35+7h44-(4+5+3=)12’ = 8h19-12’ = 8h07, 30’ of that deep doze.
23:25- q6, chilblains and bites are OK, energy still <10%.
2:30 4’ jackknives 32! Sore throat so closed windows put heating on and took calendula.
5:06 5’ quick air, lanolin cream for chilblains.
6:44 3’ but before that overexcited cos of praps hearing birds, silly.
-7:44 Half an hour doze cos of listening for birds.

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Wound check and tetanus, 3 doc appts for slit finger Nov 20th. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 80% (cos less fresh air)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~14h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-23 Saturday

Summary:

• Specific notes today: 15:03 pain 5-6, like my body is crying when I do a little, less when I do less and distract + am outdoors, but coming it hurts more for a while, pain usually 5, sometimes down to 3. 15:04 get startled again 1-2x a day, now just cos something slipped, yesterday sth sounding as if it were falling scared my system. That triggers seizures a little. Not outdoors 20h/d any more (or 18 may have been more realistic), more like 3-4h in the daytime and 5h at night. 23:18 Again too much forum stuff after showering warm and cold, first time for 2.5d cos of the injury.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew (), late bed cos of: wife, photos, pigs (). Sleep ().
• Biggest issues: Usable energy 8% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): 73.6 (underwear) kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-.
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better.
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

No pics, but some nature notes, these were the main ones as an example, as I’m generally not noting them here anymore: Green woodpecker calls as often, female blackbird around often now. Chaffinches too. Woodpigeons in smaller groups. Carrion crows now often call around sunrise and sunset.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 0 jackknives (❌), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 92% ❌, SLEEP 7h28 (✅) ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 10h rest, 4h very slow, 2h slow, 0h medium/quick.

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): 7h28 (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:25-:7.09 Sum: h35+7h09-(4+4+4+4=)16’ = 7h44-16’ = 7h28
23:25- 1:48 4’ closed 1 window, sore throat, 2:42 4’ stomach pang: drink? 4:14 4’ elbow hurts, hand a little. 5:48 imbalance as usual, tape.
Up -7:09 helmet headache, so drink.

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Wound check and tetanus, 3 doc appts for slit finger Nov 20th. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 80% (outdoors a bit more again)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-24 Sunday

Summary:

• Specific notes today: 11:12 convinced my wife not to put bandaid/plaster on my injury, but a white pad and a woollen glove over it, so air can get thru. 14:28 Altho I can’t do much it’s warmer, so I can sit in the garden almost as long as I want again, for air and song.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew (), late bed cos of: wife, photos, pigs (). Sleep .
• Biggest issues: Usable energy 8% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg.
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-.
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better.
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Blackbird bathing

Robin

Brownred Squirrel

Great woodpecker

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), ? jackknives (✅?), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 92% ❌, SLEEP 7h59, +10' deep doze ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 10h rest, 4h very slow, 2h slow, 0h medium/quick.

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): 7h59, +10' deep doze ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:57-7:22. Sum: 1h03+7h22-(4+18+4=)26’ = 8h25-26’ = 7h59, +10’ deep doze.
22:57- 1:06 4’ OK 3:01-17 „ 18’ „ sweaty cos warmer, bit of sore throat. Wound OK. No more bites. Keep forgetting my toes. Wind moving blinds made me nervous as if animal or bird, so back.
5:56 4’ leaves rustling. -7:22 deep after wind excitement. 73.5kg

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Wound check and tetanus, 3 doc appts for slit finger Nov 20th. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 85% (outdoors almost normal again)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-25 Monday

Summary:

• Specific notes today: 19:41 Took only 3x 0.3 GABA last night, maybe less seizure-ish cos of that, so leaving it at that, altho it might be os of increasing to 5x before (edit 17:27: sticking to 3x has proven right). 0:41 Right 2nd toe burning a bit, looks ok, wasn’t burning the last days, put lanolin cream + wool on it. Knackered in the evening. Not doing anything much, listening, not talking.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew, bedtime later cos of: wife, photos, pigs: sleep ().
• Biggest issues: Usable energy 8% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): 73.0 / 72.1 kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-.
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better.
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Fleecy / Cotton-wool clouds (in German: sheep clouds)

Our marten, beech / stone / white breasted… very casually eating bird food and praps keeping rodents down…

Ichneumon

Marmalade fly (or similar) - late, and not yet(?) on their way to Spain

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16? jackknives (❌), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 92% ❌, SLEEP 7h52 (✅) ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 10h rest, 4h very slow, 2h slow, 0h medium/quick.

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 (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: h+h-(++=)’ = 8h05-13’ = 7h52
22:50 0:41 5’ Right 2nd toe burning a bit, looks ok, wasn’t burning the last days, put lanolin cream + wool on it. Knackered in the evening. Not doing anything much, listening, not talking, all 3 windows open.
2:11 4’
4:58 4’
-6:55

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Wound check and tetanus, 3 doc appts for slit finger Nov 20th. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 85% (outdoors a bit more again)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-26 Tuesday

Summary:

• Specific notes today: 7:53 single new bite on right upper thigh. 20:43 3 bites: upper leg, 2 next to navel. Energy up a litte maybe 8-10%. 20:44 can hold the camera longer, but can’t walk much. 0:51 Traumeel seemed to make elbow worse, tongue + chilblains slightly hurting, bites slightly itching, thumbnail beau lines hurting since yesterday. Finger/hand hurting. 73.2 / 73.0. less firm stools than past days, no stinging.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew, bedtime, sleep .
• Biggest issues: Usable energy 9% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): 73.2 / 73.0 kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-.
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better.
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
No pics today, but notes.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 91% ❌, SLEEP 8h40 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 10h rest, 4h very slow, 2h slow, 0h medium/quick.

EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.

SLEEP (click for tonight's details): 8h40 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:12-7:08. Sum: 1h48+7h08-(4+4+4+4=)16’ = 8h56-16’ = 8h40.
22:12 Hurting, curfew early, bed after just back, 16 jackknives, difficulty moving. Can’t cold shower, warm is difficult enough, just ending cold cos that’s then better after.
23:22 4’ oil closed 1 window. Traumeel
0:51 4’ Traumeel seemed worse, 2 window closed, tongue + chilblains slightly hurting, bites slightly itching, thumbnail beau lines hurting since yesterday. Finger/hand hurting.
2:26 4’
4:46 4’ itch elbow
-7:08 up slight frontal less firm stools than past days, no stinging.

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Wound check and tetanus, 3 doc appts for slit finger Nov 20th. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 85% (cos outdoors more again)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-27 Wednesday

Summary:

• Specific notes today: 20:56 Shops in evening to see if I can, had to stop 3x walking very slowly, cos better no cycle. 0:11 itch, toe + elbow hurting, imbalance. Weight on digital scales 7:14 73.8 73.4 3x73.6 / very firm stools 72.8 73.2 72.9 73.2 73.2 kg. So shows that digital doesn’t mean exact at all, and when I and others on the web think they weigh more after stools that might just be digital scales being only pseudo-exact, rather imprecise. Bit of hurting frontal headache, maybe the cold is sometimes a bit too much for my nostrils atm? (edit: I got used to it.) Belly OK.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew, bedtime, sleep .
• Biggest issues: Usable energy 9% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): 73.6 / 73.2 kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-.
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better.
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Magnolia budding, Chrysanthemums flowering and woodpigeon-group all preening themselves

y

g,

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16? jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 91% ❌, SLEEP 7h53 (✅) ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 10h rest, 4h very slow, 2h slow, 0h medium/quick.

EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.

SLEEP (click for tonight's details): 7h53 (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:52-6:53. Sum: 1h08+6h53-(4+4+=)8’ = 8h01-8’ = 7h53.
22:52- 0:11 4’ itch toe + elbow hurting imbalance. 5:19 4’ toe hurting -6:53

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Wound check and tetanus, 3 doc appts for slit finger Nov 20th. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 85% (outdoors more again)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-28 Thursday

Summary:

• Specific notes today: 12:46 anus stinging again: carrot salad with citrus? Edit: No, just constipation after adjusting to threonate. 15:11 just a normally 5’ walk to post office took me 20’, and frustrating cos I didn’t have the data he needed with me (Edit: did actually have it on my laptop, just couldn’t get my head round where, cos of stress). My wife coming with me to help actually harmed more than it helped, cos she has her own impatience/speed/nerve triggers, and I need time to move, think, calm down in between. 18:51 post office 2nd time no problem, getting there 10’, few breaks, slower, felt better, several reasons. then got worked up shortly before it was my turn, 20 people in the queue, home ok as well, managed to carry 6 buckets of rain water with not many problems, still feel quite well. When I am on my own I can go my own pacer, don’ feel obliged to hurry up, 2ndly I’d been outside again a while, 3rdly forgetting supps and taking 2 closer may have helped (creatine & GABA), often feel better in evenings. Try earlier screen curfew. Now taking glutathione in the liposomal form. Pushing thru this evening, I managed quite a bit. Only took 3x0.3 GABA last night instead of 4, without compensating in the daytime this time, so thinking about continuing that (edit: have done so).
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew , bedtime (), sleep 8h04 .
• Biggest issues: Usable energy 9% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg.
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-.
• Last treatment improvements: liposomal glutathione doesn’t seem to make a difference, but I’m keeping to it till empty, for 6 months. 3x0.3 instead of 4 at night seems better for seizure-ishness now. When I increased threonate to 2x3g I don’t seem to have noted, but that happened before I developed constipation, cos before I had loose stools, so I’ll change it as of now too. LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better.
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Robin trying for firethorn berries like the blackbirds, but getting a dud one first, dropping the 2nd, picking it up again, and then showing what he thinks of it

g

“Our” Woodpigeon near like often (even more so in December)

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 0 jackknives (❌), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 91% ❌, SLEEP 8h04 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 10h rest, 4h very slow, 2h slow, 0h medium/quick.

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): 8h04 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:45-7:01. Sum: 1h15+7h01-(4+4+4=)12’ = 8h16-12’ = 8h04.
22:45- 0:0? 4’
2:57 4’ from noisy passersby
4:26 4’ still 2 windows open.
7:01 helmety headache, rest ok, big toe hurting „?“.

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Wound check and tetanus, 3 doc appts for slit finger Nov 20th. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). 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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 85% (outdoors more again)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-29 Friday

Summary:

• Specific notes today: 9:22 altho I had glove on I injured my finger wound a little. 22:33 OK this evening. Shops at 19:30 using my bike for the first time, but a bit too much pressure on my right hand. Wife wanted time so got a bit late for me, hurting 5+.
  5:17 elbow hurting, tongue only slightly, right toe only slightly in shoes, no more insect bites 8:01 Helmety headache for 20’ or so, no sore throat, rest ok.
  9:22 altho I had glove on I injured my finger wound a little. 22:33 OK this evening. Shops at 19:30 using my bike for the first time, but a bit too much pressure on my right hand. Wife wanted time so got a bit late for me, hurting 5+.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew (), late bed cos of: wife (). Sleep .
• Biggest issues: Usable energy 9% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg.
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-.
• Last treatment improvements: glutathione now liposomal until June 2025. 3x0.3 GABA instead of 4 at night seems better for seizure-ishness now. LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better. Up to 2x3g/d Nov24, paradoxically have constipation! LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better. Idea from reading this in Jan: constipation is more likely from changing glutathione to liposomal rather than increasing threonate, so stop glutathione a while?
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Female chaffinch
(can’t decide which photo is the better one)

Blue tit, on the first one it’s the wildlife camera and it’s about to land on it, which I was watching

Blackbird subsinging

Two yellow-necked field mice pinching from the birds’ fatball again.
Sweet, but it’s my test to see if rats might get it too, so I’m hanging it higher a few days after.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), ? jackknives, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 91% ❌, SLEEP 9h15 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 10h rest, 4h very slow, 2h slow, 0h medium/quick.

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): 9h15 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: 1h22+8:01=9h23-8 = 9h15
22:38- 1:22 4’ closed 3 of 3 windows, feel ok 5:17 4’ ok, elbow hurting, tongue only slightly, right toe only slightly in shoes, no more insect bites, opened 1 window again. -8:01. Helmety headache for 20’ or so, no sore throat, rest ok.

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Wound check and tetanus, 3 doc appts for slit finger Nov 20th. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x3g in Nov. GABA down to 3x0.3g at night, +3x0.6g. Glutathione liposomal till at least June 2025. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025.
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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 85% (outdoors more again)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-11-30 Saturday

Summary:

• Specific notes today: 10:21 Strange, hand shaking so can’t use the trackpad well. 12:21 no stinging colon today. 18:16 did sting after all a bit quite a few hours. 22:56 evening OK, arm hurts more at night than „at day“, atm feels OK, Traumeel. Finger injury still seems OK. Flap seems to have skin under it. Cream, but unsure if that’s good for me. 22:57 Shop in the evening seemed OK, after glass and pond & lake. 5:43 a 4th 0.3g GABA, yesterday and day before only 3x GABA. Energy up to 10%. Dreamt of problem that I’m sometimes quicker and sometimes slower and how it sometimes might influence me when people are watching. 7:16 helmety headache, thirsty, so that’s probably it. 7:32 74.4 / 73.4 kg with more underwear. Colon stinging a bit.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew (), late-ish bed, sleep ().
• Biggest issues: Usable energy 10% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): 74.4/73.4 kg with underwear .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-.
• Last treatment improvements: glutathione now liposomal until June 2025. 3x0.3 GABA instead of 4 at night seems better for seizure-ishness now. LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better. Up to 2x3g/d Nov24, paradoxically have constipation! LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better. Idea in Dec: constipation is more likely from changing glutathione to liposomal rather than increasing threonate, so stop glutathione a while?
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Buzzard sailing over our house for four minutes

50 cranes over our house (in dusk +120)

Magpie at fatball again and Clematis in sun again

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 0 jackknives (❌), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 90% ❌, SLEEP 7h58 (✅) ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 10h rest, 4h very slow, 2h slow, 0h medium/quick.

EXHAUSTIBILITY: Theoretically stably better from circadian rhythm, then LDN since Oct 1st - but moderate triggers bring it down to 10% for days to weeks.

SLEEP (click for tonight's details): 7h58 (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: h57+7h16-(4+4+3+4=)15’ = 8h13-15’ = 7h58.
23:03- 0:31 4’ OK, deep, closing 2nd window. 1:54 temperature after closing was 14°, not 12° like the other days. 4:51 3’. 5:43 4’ 4th GABA, yesterday and day before only 3x GABA. Energy up to 10%. Dreamt of problem that I’m sometimes quicker and sometimes slower and how it sometimes might influence me when people are watching.
-7:16 helmety headache, thirsty, so that’s probably it. 7:32 with 74.4 / 73.4 with more underwear. Colon stinging a bit.

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Wound check and tetanus, 3 doc appts for slit finger Nov 20th. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x3g in Nov. GABA down to 3x0.3g at night, +3x0.6g. Glutathione liposomal till at least June 2025. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025.
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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 85% (outdoors more again)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

Reason I’m now behind even more is cos I’ve been revamping a forum, till everyone’s happier with it, so haven’t managed to wade thru all the snaps faster. But I’ve been noting everything fibro/mcas/postvac-wise (as well as tons of useless but for me rewarding birding stuff). There are actually quite some advantages of going thru the stuff a month later rather than immediately.

2024-12-01 Sunday

Summary:

• Specific notes today: Cos of thinking about how best to curb the rats that come over from neighbour I needed to do quite a bit of NSDR at night, but that worked out.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew (), early bed, sleep fairly long but using NSDR ().
• Biggest issues: Usable energy 10% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): 73.1 / 72.6 kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st.
• Last treatment improvements: glutathione now liposomal until June 2025. 3x0.3 GABA instead of 4 at night seems better for seizure-ishness now. LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better. Up to 2x3g/d Nov24, paradoxically have constipation! LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better. Idea in Dec: constipation is more likely from changing glutathione to liposomal rather than increasing threonate, so stop glutathione a while?
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Our white-breasted stone marten at 22:30 - a bit grainy cos wildlife camera, but for once in colour:

Male house sparrow

Comma in hibernation right before the garden gate… stayed there till Dec 26th, then vanished, I hope still alive!

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16? jackknives, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 90% ❌, SLEEP 8h11, ?60' of that deep doze (✅) (✅) ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 8h rest, 6h very slow, 2h slow, 0h medium/quick.

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): 8h11, ?60' of that deep doze (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:10-6:56. Sum: 1h50+6h56-(1+30+4=)35’ = 8h46-35’ = 8h11, ?60’ of that deep doze.
22:10- together. 0:37 5’ woke in between cos of elbow pain 0:48 - q6 cos of thinking of rats. 1:19 NSDR 1:20 windows closed before, now 1 closed. 5:33 4’ last break caused quite a long need for NSDR, nose stuffy, but with open window and colder room open. Trying to keep elbow twisted is better. 6:12 weird that I can’t get to sleep, deep dozing, NSDR. 6:56 up. 6:58 seem to have had 2 windows open from 1 on

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Wound check and tetanus, 3 doc appts for slit finger Nov 20th. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x3g in Nov. GABA down to 3x0.3g at night, +3x0.6g. Glutathione liposomal till at least June 2025. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025.
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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 85% (outdoors more again)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-12-02 Monday - lots of pics today

Summary:

• Specific notes today: 15:08 Out 45’ to lake, hardly moved, but really hurting, way above limits.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew, late-ish bed (). Sleep ().
• Biggest issues: Usable energy 10% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st.
• Last treatment improvements: glutathione now liposomal until June 2025. 3x0.3 GABA instead of 4 at night seems better for seizure-ishness now. LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better. Up to 2x3g/d Nov24, paradoxically have constipation! LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, gut problems got better. Idea in Dec: constipation is more likely from changing glutathione to liposomal rather than increasing threonate, so stop glutathione a while?
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

White-breasted stone marten again looking oh so cute

Black-headed gull

Grey heron #1

Male and female chaffinch

Little grebe / dabchick… first without fish…

Grey heron #2

Male mallard duck couple

Little grebe / dabchick again: now catches a fish, throws it around and lets it fall again until it’s “done”, then eats it, this is the whole scene, bear with me or scroll quick…

Grey heron #2 again

20 Woodpigeons (as well as 3 crows) in the same tree in which the grey heron flew on the last pic above

Grey heron #1 again

Comma now head down – so the white “comma” of the comma is up top, plus it looks as if it’s laughing and the comma is the eye of a face.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16? jackknives (❌), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 90% ❌, SLEEP 8h27 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 10h rest, 4h very slow, 2h slow, 0h medium/quick.

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): 8h27 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: 1h18+7h16-(4+3+=)7’ = 8h34-7’ = 8h27, ’ of that deep doze.

• 22:42- 3:34 4’ long, deep, sore throat so closed 2 of 3 w. 6:18 3’ NSDR cos late-ish im the night just in case, the last hour is shallowest. -7:16 nose had been closed praps cos I’d left 1 heating on. No NSDR, managed to distract from annoying comment of a bird forum moderator.

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(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 : 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 (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Wound check and tetanus, 3 doc appts for slit finger Nov 20th. Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again: My wife brought them my notes + 1 report Oct 4th (me jittery). Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed 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.
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: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. Mag threonate: Up to 2x3g in Nov. GABA down to 3x0.3g at night, +3x0.6g. Glutathione liposomal till at least June 2025. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (able to flush). LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025.
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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. 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:

Quality of life: 85% (outdoors more again)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-12-03 Tuesday

Summary:

• Specific notes today: 14:11 Colon still stinging regularly, cream helps sometimes, so can’t be from the lemon juice in the carrot salad as I first thought. 22:13 Screen curfew early. Still no chance of table tennis. Chilblains better. Not sure what to do with the broken toenail yet, just taking off a little at a time (edit: it turned out it was a chip with a healthy nail underneath). No bites. No seizure-ishness. But my wife says I look very knackered, white-grey-yellow face. Probably from forum + rodents. But good progress with that today. 22:31 16 jackknives. 11% energy / 89% fatigue, but not sure, cos I didn’t really test it, didn’t do much, only talking and leaves. 2:58+5:24 elbow a bit, slightly imbalanced. 5:24 vivid dreams: running around restaurants/hotels for fun, but taking short cut using a lift got claustrophobic, everything fine + autonomous, built in that I no longer have a life with the purpose of helping, just going around enjoying myself, but a bit ‚empty‘, nice attractive people but all transient.
• Local pain to work on: Elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew / late-ish bed (). Sleep ().
• Biggest issues: Usable energy 11% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st to 11% on 3rd.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Glutathione liposomal Dec24. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. Constipation (me!?) Dec: from switching glutathione to liposomal or from increasing threonate to 2x3g? LDN Jul 18th- 1.5mg for nimbleness .
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

TWO white-breasted stone martens snuggling

Yellow-necked wood mouse looking for a way up, metal didn’t work, but the facade is no problem…

Dunnock

Jay lands, raises its crest – nervous I guess cos of me watching 7m away - and flies off again

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). 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 , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
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-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, 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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 89% ❌, SLEEP 8h03 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 8h rest, 6h very slow, 2h slow, 0h medium/quick.

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): 8h03 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:31-6:48. Sum: 1h29+6h48-(4+4+6=)‘14 = 8h17-14’ = 8h03.
22:31- 0:27 4’ 1:30 ?4’ closed 2nd window nostrils OK 11% the 89%, but not sure, cos I didn’t really test it, didn’t do much, only talking and leaves. 2:58 4’ elbow a bit, slightly imbalanced. 5:24 6’ elbow, rest OK, vivid dreams: restaurants/hotels, taking short cut using a lift claustrophobic, everything elate fine + autonomous, built in that I no longer have a life with the purpose of helping, just going around enjoying myself, but a bit ‚empty‘, nice attractive people but all transient. -6:48 up, but dozing somewhat after the last break.

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-. Dentistry: Next I'll need 4 tiny fillings (postponed from Oct 1st cos of triggers/flares), definitely without anaesthetic. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Family: Aug 28th/29th-Oct 11th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: a little. Click for list since Nov 7th 2022..."

(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 : 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) for disability and Jun 10th retirement (May 29th (9d), Jun 7th & 10th (3 weeks) & 28th ().
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from meeting family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
(Nov 19th-) Surgery with tetanus for slit finger, 4 doc appts.

(3) DOCS: 3) Applying for higher disability now. Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) new sleep lab psychiatrist not helpful any more. (Jun 10th) appt. with public health officer for retirement too long. (Jun 26th) Cardio helped.
GP (Apr 25th): Update (cancer and bp OK), will help with disability.
CARDIO: Checks every 2 months, good as I can’t take the CVD meds.
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: Sorta OK considering no meds tolerated. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(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 , 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 (SBP ~100), so 2mg is a good compromise . (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 (✅)): Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Elbow tendonitis since Aug24, improving Dec24. Mag threonate: Up to 2x3g Nov24- and Glutathione liposomal Dec 2024: is one causing constipation? GABA down to 3x0.3g at night, +3x0.6g. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Oct 22nd (+11d), and before that seizure-ish 6d from intermittent LDN. Last esophagus block Sep 25th (always able to flush them down now with big hard gulps). LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal Dec 2024.
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 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) 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: Sep 25th (able to flush it), Aug 7th, 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. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Nattokinase again Jan 10th- 2025. Mag threonate: Sep 28th- 2x0,9g, to 2x1.35g to 2x1.55g to 3x3g: gut problems. Ellagic acid again Sep 6th-. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. 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 19th/20th 2023: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th- 2x0.1g. 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:

Quality of life: 85% (outdoors more again)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: 100s per day, see the pick of pics
e) Human life: (TT laughter not possible Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical”* energy 30% () since LDN.)*
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Simplified: -

Click for development/summaries and see profile...

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”