JayCS’s Fibro Blog

[JayCS]

2025-01-19 Sunday

Summary:

• Specific notes today: 0:14 procrastinated: improving forum as admin. Don’t seem to have played TT? - I think I’ll adjust the “latest trigger” now, cos energy has remained fairly stable at around 14% on average during the days, and weight around 72kg.
• Local issues to work on: Elbows tendons by stretching and Traumeel. Beau lines on left thumbnail by minimising water contact. Constipation (+ a inflammation): linseed oil, stopping glutathione, t inflammation/pain - no ideas.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT ?. 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, from 11 to 14% Dec 8th, but first short table tennis on 12th, Jan 6th: downgrading that to 11-12%. Jan 8th: 16%, so end?
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. 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: Dec 15th +54d! .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Two blackbirds

‘My’ Squirrel

Sparrowhawk – didn’t know what it was at the time

… and some white-fronted geese migrating, details of overtaking each other rather than dropping back

Mallard ducks, normal and different coloured, details of tongue and beak

Cormorant, head glinting in the sun

Moorhen on ice, legs crossed

Bullfinch male

Great woodpecker male nearer than ever

Bullfinch pair and female

Woodpigeon neck colours

Jay

Blackbird female eating ivy berries

City pigeons – altho we see them everywhere in town centres, I’ve never taken them seriously, and now have been long keen to study them, but never been long enough in town: but today.

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 ?, 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 86% (❌), SLEEP partly dozing the last 2h (❌) ('PPA‘: 2➔4 ❌). Energy profile: 'very slow' with 6h rest, 8h 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): 7h44, partly dozing the last 2h (❌), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: 8h12-h17-(4+4+3=)11’ = 7h55-11’ = .
Bed 0:17- 1w 3:13 4’ imbalance now 2w 5:13 4’ 6:45 noisy bit sick 3’ 8:12, dozing since 6 cos of phone-calls to do.

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: Dec 15th (+54d). 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 / 54 Dec 15th 2024. Stress, histamine & less GABA. Dec 15th (slight) 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: 88% (outdoors more again, some table tennis)

Reasons to be cheerful - most important, but always quite high standard:
Plant, bird & animal life/interaction: 100s per day, see the pick of pics
Human life: (TT laughter ? Skip-Bo Wife )
Environment: (outdoors/fresh air ~15h/d .)
Body: (“Theoretical” energy/nimblenss “30%” () since LDN.)
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Omitting ‘Research’, ‘Lessons in self-care’ and ‘Simplified’, cos no longer helpful.

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”

[JayCS]

2025-01-20 Monday

Summary:

• Specific notes today: 18:35 1:2 against 2nd mate, I was playing well, but he was playing very well. Glass fiber guy made me nervous, but in the evening energy started coming up again. Trying screen curfew again, cos of procrastinating too much lately.
• Local issues to work on: Elbows tendons (partly by stretching and Traumeel, mainly just waiting and playing etc. left-handed). Beau lines on left thumbnail by minimising water contact. Constipation (+ a inflammation): linseed oil, linseeds, stopping glutathione, t inflammation/pain - no ideas.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 1:2 (). Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ~71-72 kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-Jan 8th = 7 weeks.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- great for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. But constipation (me!?) since Dec: apparently from increasing threonate to 2x3g rather than from switching glutathione to liposomal. LDN Jul 18th- 2024 1.5mg for nimbleness .
• Last focal seizure: Dec 15th 2024 +54d! .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
No pics worth sharing, but lively atmosphere, cos a 2nd male blackbird turned up often, so more blackbird chasing than ever, the old pair chasing the new cheeky female and male. Dunnock being chased by robin.
What happened in March was then that 3 of those blackbirds disappeared, maybe the sparrowhawk, not sure yet, see if I can figure it out from my Jan/Feb notes. And robin is now so occupied with his girlfriend that he has no time to chase dunnocks, who sing a lot, along with the chiffchaffs and wrens, and sometimes come down into the garden too, without being chased any more. The robin pair sometimes chase each other, whilst singing. The first evening they did that they flew in a circle around the garden 20 times!

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 1:2 (❌), talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), usually 32, sometimes 16 jackknives before bed during back exercises (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 86% (❌), SLEEP 7h44 (✅) ('PPA‘: 4 for 10-30' ➔ 2 ❌). Energy profile: 'very slow' with 6h rest, 8h 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): 7h44 (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: h16+7h39-(4+4+3=)11’ = 7h55-11’ = 7h44.
22:44- 0:08 4’ 16 jackknives, 16 press-ups before bed, left elbow hurting cos of the press-ups. 3w, now 1w. 3:11 4’ 5:37 3’ Blässgänse sehr niedrig, laut. -7:39

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-Jan 8th. Dentistry: Next I'll need 4 tiny fillings (postponed from Oct 1st cos of triggers/flares), definitely without anaesthetic. Tooth cleaning Aug 14/15th 2024: 12 days. Local anaesthesia: Feb 15th-Apr 28th 2024. Family: Aug 28th/29th-Oct 11th 2024. Talking to 4 docs: May 29th-July 3rd 2024. 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 2024-Jan 8th 2025) Surgery with tetanus for slit finger, 4 doc appts. Energy from 9 to 10% on Dec 1st, from 11 to 14% Dec 8th, but first short table tennis on 12th, Jan 6th: downgrading that to 11-12%. Jan 8th: 16%.

(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: threo seems the 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: Dec 15th (+54d). 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 / 54 Dec 15th 2024. Stress, histamine & less GABA. Dec 15th (slight) 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: 88%. In hindsight (Apr 1st 2025) I don’t think I’m getting back up to 90% after slitting finger in Nov incl. tetanus jab, life has become slightly harder.

Reasons to be cheerful - most important, but always quite high standard:
Plant, bird & animal life/interaction: 100s per day, see the pick of pics
Human life: (TT laughter Skip-Bo Wife )
Environment: (outdoors/fresh air ~15h/d .)
Body: (“Theoretical” energy/nimblenss “30%” () since LDN.)
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Omitting ‘Research’, ‘Lessons in self-care’ and ‘Simplified’, cos no longer helpful.

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”

[JayCS]

2025-01-21 Tuesday

Summary:

• Specific notes today: 12:22 TT 2:1 left-handed without gloves. Lost 3rd cos of time pressure. Speaking with a passerby made me nauseous and weak, so had to stop watching the peregrines. 13:05 After stopping liposomal glutathione still got constipation, but can’t stop the threonate cos it’s so good for sleep.
• Local issues to work on: Elbows tendons (partly by stretching and Traumeel, mainly just waiting and playing etc. left-handed). Beau lines on left thumbnail by minimising water contact. Constipation (+ a inflammation): linseed oil, linseeds, stopping glutathione, t inflammation/pain - no ideas.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 2:1 (as always now left-handed cos of elbow tendinitis) (). Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ~71-72 kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-Jan 8th = 7 weeks.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- great for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. But constipation (me!?) since Dec: apparently from increasing threonate to 2x3g rather than from switching glutathione to liposomal. LDN Jul 18th- 2024 1.5mg for nimbleness .
• Last focal seizure: Dec 15th 2024 +54d! .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Peregrine on entering ramp

Pergrine in gutter

Carrion crow pair next door

Male Blackbird bathing

Blue tit feeding and bathing

Blackbird and robin sitting and subsinging next to each other in the firethorn and on the steps!

My ‘decoration’ on the street in front of the house at the moment

Peacock butterfly still hibernating indoors

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 2:1 left-handed (❌), talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), usually 32, sometimes 16, jackknives before bed during back exercises (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 86% (❌), SLEEP 7h31, 30' of that dozing (✅) ('PPA‘: 4 for 10-30' ➔ 2 ❌). Energy profile: 'very slow' with 6h rest, 8h 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): 7h31, 30' of that dozing (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: h27+7h15-(4+4+3=)11’ = 7h42-11’ = 7h31, 30’ of that dozing.
7:46 bed at 23:33, up at 0:52 4’ 2nd fingr on right hand eating 3 → 1w. 2:15 4’ finger Traumeel 4:38 3’ -7:15 up after 30’ dozing. Headache, but awake altho bed too late.

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-Jan 8th. Dentistry: Next I'll need 4 tiny fillings (postponed from Oct 1st cos of triggers/flares), definitely without anaesthetic. Tooth cleaning Aug 14/15th 2024: 12 days. Local anaesthesia: Feb 15th-Apr 28th 2024. Family: Aug 28th/29th-Oct 11th 2024. Talking to 4 docs: May 29th-July 3rd 2024. 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 2024-Jan 8th 2025) Surgery with tetanus for slit finger, 4 doc appts. Energy from 9 to 10% on Dec 1st, from 11 to 14% Dec 8th, but first short table tennis on 12th, Jan 6th: downgrading that to 11-12%. Jan 8th: 16%.

(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: threo seems the 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: Dec 15th (+54d). 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 / 54 Dec 15th 2024. Stress, histamine & less GABA. Dec 15th (slight) 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: 88%. In hindsight (Apr 1st 2025) I don’t think I’m getting back up to 90% after slitting finger in Nov incl. tetanus jab, life has become slightly harder.

Reasons to be cheerful - most important, but always quite high standard:
Plant, bird & animal life/interaction: 100s per day, see the pick of pics
Human life: (TT laughter Skip-Bo Wife )
Environment: (outdoors/fresh air ~15h/d .)
Body: (“Theoretical” energy/nimblenss “30%” () since LDN.)
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Omitting ‘Research’, ‘Lessons in self-care’ and ‘Simplified’, cos no longer helpful.

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”

[JayCS]

2025-01-22 Wednesday

Summary:

• Specific notes today: 8:55 narked cos my pension can’t be increased as I hoped. TT n/a. Night spoilt by glass fibre thoughts and cardio early.
• Local issues to work on: Elbows tendons (partly by stretching and Traumeel, mainly just waiting and playing etc. left-handed). Beau lines on left thumbnail by minimising water contact. Constipation (+ a inflammation): linseed oil, linseeds, stopping glutathione, t inflammation/pain - no ideas.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT n/a. Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ~71-72 kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-Jan 8th = 7 weeks.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- great for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. But constipation (me!?) since Dec: apparently from increasing threonate to 2x3g rather than from switching glutathione to liposomal. LDN Jul 18th- 2024 1.5mg for nimbleness .
• Last focal seizure: Dec 15th 2024 +54d! .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Two woodpigeons – always on the lookout for my MIA one, never seeing him again.

But there was a sparrowhawk around shortly after last time I saw him, hope he made it short and as sweet as possible.

Brown red squirrel drinking and 1x Black brown squirrel climbing

Female blackbird a-preening

Male blackbird

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 n/a, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), usually 32, sometimes 16 jackknives before bed during back exercises (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 86% (❌), SLEEP 7h49, 60' of that dozing/NSDR (✅) ('PPA‘: 4 for 10-30' ➔ 2 ❌). Energy profile: 'very slow' with 6h rest, 8h 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): 7h49, 60' of that dozing/NSDR (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: 1h21+7h04-(4+4+24+4=)36’ = 8h25-36’ = 7h49, 60’ of that dozing/NSDR.
22:39- after forums, wife & piggies, no curfew. 1:37 2nd finger’s hurting as if I’d broken it, praps from carrying ladder and sawing a little.
3:45 4’ still 2w. Finger hurting a bit yet. Imbalance as often.
4:19 glass fibre thoughts, so only dozing 35’, so NSDR. Stomach ache, hunger ache, heated up. 5:47 still deep dozing after q6 but screen too bright + NSDR. -7:04 enjoyed NSDR, of this last hour I only heard 10-15’ so I must have been sleeping, but felt as if I’m awake, so good for that reason to do NSDR as well. Feel fairly restored. Noises outside and thought in my head die spoil deep sleep. Got my 8h fairly full cos of NSDR (except q6)

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-Jan 8th. Dentistry: Next I'll need 4 tiny fillings (postponed from Oct 1st cos of triggers/flares), definitely without anaesthetic. Tooth cleaning Aug 14/15th 2024: 12 days. Local anaesthesia: Feb 15th-Apr 28th 2024. Family: Aug 28th/29th-Oct 11th 2024. Talking to 4 docs: May 29th-July 3rd 2024. 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 2024-Jan 8th 2025) Surgery with tetanus for slit finger, 4 doc appts. Energy from 9 to 10% on Dec 1st, from 11 to 14% Dec 8th, but first short table tennis on 12th, Jan 6th: downgrading that to 11-12%. Jan 8th: 16%.

(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: threo seems the 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: Dec 15th (+54d). 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 / 54 Dec 15th 2024. Stress, histamine & less GABA. Dec 15th (slight) 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: 88%. In hindsight (Apr 1st 2025) I don’t think I’m getting back up to 90% after slitting finger in Nov incl. tetanus jab, life has become slightly harder.

Reasons to be cheerful - most important, but always quite high standard:
Plant, bird & animal life/interaction: 100s per day, see the pick of pics
Human life: (TT laughter Skip-Bo Wife )
Environment: (outdoors/fresh air ~15h/d .)
Body: (“Theoretical” energy/nimblenss “30%” () since LDN.)
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Omitting ‘Research’, ‘Lessons in self-care’ and ‘Simplified’, cos no longer helpful.

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”

[JayCS]

2025-01-23 Thursday

Summary:

• Specific notes today: TT 2:1 left-handed. Despite doc (cardio at 8:00, taking bloods for vasculitis - as I didn’t get a phone call that wasn’t confirmed). 14:30 shop, wife helped me try on 3 tops and 2 jeans, pain 5. Evening: Weird how able to do things, can cycle really quickly, as soon as I got off in the shop I had to shuffle the whole time, hold arms up, all difficult.
• Local issues to work on: Elbows tendons (partly by stretching and Traumeel, mainly just waiting and playing etc. left-handed). Beau lines on left thumbnail by minimising water contact. Constipation (+ a inflammation): linseed oil, linseeds, stopping glutathione, t inflammation/pain - no ideas.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 2:1 left-handed despite doc (). Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ~71-72 kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-Jan 8th = 7 weeks.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- great for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. But constipation (me!?) since Dec: apparently from increasing threonate to 2x3g rather than from switching glutathione to liposomal. LDN Jul 18th- 2024 1.5mg for nimbleness .
• Last focal seizure: Dec 15th 2024 +54d! .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Peregrine flying around its tower

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 2:1 left-handed despite doc (❌), talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), usually 32, sometimes 16 jackknives before bed during back exercises (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 86% (❌), SLEEP 8h12 ✅ ('PPA‘: 4 for 10-30' ➔ 2 ❌). Energy profile: 'very slow' with 6h rest, 8h 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): 8h12 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: 1h29+6h52-(5+4+=)’ = 8h21-9’ = 8h12.
22:31- bed 1:51 5’ drank cos slight helmet headache 4:34 4’ -6:52

2) Watching TRIGGERS, esp. of exhaustibility. Surgery with tetanus for slit finger Nov 19th-Jan 8th. Dentistry: Next I'll need 4 tiny fillings (postponed from Oct 1st cos of triggers/flares), definitely without anaesthetic. Tooth cleaning Aug 14/15th 2024: 12 days. Local anaesthesia: Feb 15th-Apr 28th 2024. Family: Aug 28th/29th-Oct 11th 2024. Talking to 4 docs: May 29th-July 3rd 2024. 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 2024-Jan 8th 2025) Surgery with tetanus for slit finger, 4 doc appts. Energy from 9 to 10% on Dec 1st, from 11 to 14% Dec 8th, but first short table tennis on 12th, Jan 6th: downgrading that to 11-12%. Jan 8th: 16%.

(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: threo seems the 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: Dec 15th (+54d). 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 / 54 Dec 15th 2024. Stress, histamine & less GABA. Dec 15th (slight) 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: 88%. In hindsight (Apr 1st 2025) I don’t think I’m getting back up to 90% after slitting finger in Nov incl. tetanus jab, life has become slightly harder.

Reasons to be cheerful - most important, but always quite high standard:
Plant, bird & animal life/interaction: 100s per day, see the pick of pics
Human life: (TT laughter Skip-Bo Wife )
Environment: (outdoors/fresh air ~15h/d .)
Body: (“Theoretical” energy/nimblenss “30%” () since LDN.)
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Omitting ‘Research’, ‘Lessons in self-care’ and ‘Simplified’, cos no longer helpful.

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”

[SophieJo]

Hi @JayCS,
Love the photos!

[JayCS]

Thank yoouuuu!
Lots of rich, exciting moments for me keeping spirits up,
that I hope by sharing can be re-recreated pretty fully without too much imagination!

[JayCS]

2025-01-24 Friday

Summary:

• Specific notes today: 18:54 Strangely feel quite OK, never felt as good after any dentist treatment than I can remember. Absolutely no pain. Wife asked if dead, but no, I could feel everything, just a tiny pain, but no nerve pangs. Probably good not doing anything else except shop 3’ there and back and 3’ there. Definitely didn’t want to talk to anyone, altho I did talk quite a bit before and after at the dentist’s. Bed 23:21 after forum stuff. 1:16 4’ slight imbalance, slight t pain, 2w, ear plugs cos Friday night. 4:04 4’ 32 jackknives no problem and 16 press-ups also without problems. 4:18 somehow wide awake so had to get up to get phone for NSDR, hunger pang so drinking more almond milk. Praps ear plugs again together with louder NSDR. Sensitive at the moment, so ear plugs better. Dozing since the last break, 10’. 5:35 didn’t catch much of NSDR, 10’, but still awake again, so trying NSDR again. -7:30 up, seem to count it all as sleep, cos didn’t catch any of the NSDR either. 2w open the whole night. Elbows and right 2nd finger better. Tongue hurting a bit: Histamine surge from tooth treatment waking me up and hurting tongue? Or is the tongue from marmite twice the last 2 days but one? Cleaning fissure with water from now.
• Local issues to work on: Elbows tendons (partly by stretching and Traumeel, mainly just waiting and playing etc. left-handed). Beau lines on left thumbnail by minimising water contact. Constipation (+ a inflammation): linseed oil, linseeds, stopping glutathione, t inflammation/pain - no ideas.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT no cos of dentist’s (). Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ~71-72 kg .
• Latest big trigger: Tooth filling Jan 24th(-Mar15th). Surgery with tetanus for slit finger Nov 19th-Jan 8th = 7 weeks.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- great for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. But constipation (me!?) since Dec: apparently from increasing threonate to 2x3g rather than from switching glutathione to liposomal. LDN Jul 18th- 2024 1.5mg for nimbleness .
• Last focal seizure: Dec 15th 2024 +54d! .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

No pics, unusually, and in my notes I’ve been mainly watching out for predators - a group of four carrion crows are down in our gardens quite a lot. Plus subsong from robin and the homie blackbird and I believe a new one, so there’ll be some beef coming up… (actually the new one will eventually take over in February cos the homie one will disappear, as will two females, and one further male definitely will be killed - that’s why I’m now in hindsight looking out for predators. All exciting, but quite a lot of sadness coming up, too. That’s the problem watching birds and animals in such detail, distinguishing individuals, giving them names, etc.

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 no cos of tooth filling (❌), talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 32 jackknives and 16 press-ups before bed during back exercises (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 86% (❌), SLEEP 7h52, 30' of that dozing - awake likely cos of histamine from tooth filling (✅) ('PPA‘: 4 for 10-30' ➔ 2 ❌). Energy profile: 'very slow' with 6h rest, 8h 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, 30' of that dozing (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: h39+7h30-(4+4+4+5=)17’ = 8h09-’ = 7h52, 30’ of that dozing.
Bed 23:21 after forum stuff. 1:16 4’ slight imbalance, slight t pain, 2w, ear plugs cos Friday night. 4:04 4’ 32 jackknives no problem and 16 press-ups also without problems. 4:18 somehow wide awake so had to get up to get phone for NSDR, hunger pang so drinking more almond milk. Praps ear plugs again together with louder NSDR. Sensitive at the moment, so ear plugs better. Dozing since the last break, 10’. 5:35 didn’t catch much of NSDR, 10’, but still awake again, so trying NSDR again. -7:30

2) Watching TRIGGERS, esp. of exhaustibility. Dentistry: Today 1st filling which luckily turned out to be one that needed doing anyway. Next I'll need another 2 tiny fillings (postponed from Oct 1st cos of triggers/flares), better without anaesthetic. Surgery with tetanus for slit finger Nov 19th-Jan 8th. Tooth cleaning Aug 14/15th 2024: 12 days. Local anaesthesia: Feb 15th-Apr 28th 2024. Family: Aug 28th/29th-Oct 11th 2024. Talking to 4 docs: May 29th-July 3rd 2024. 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 2024-Jan 8th 2025) Surgery with tetanus for slit finger, 4 doc appts. Energy from 9 to 10% on Dec 1st, from 11 to 14% Dec 8th, but first short table tennis on 12th, Jan 6th: downgrading that to 11-12%. Jan 8th: 16%.
Jan 24th(-Mar15th): tooth filling Jan 24th(-Mar15th), despite it not hurting at all and no anaesthetic, but a histamine surge all the same, causing worse sleep for while and then. long backlash.

(3) DOCS: 3) Tooth filling Jan 24th (causing a 7 week flare). 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: threo seems the 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: Dec 15th (+54d). 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 / 54 Dec 15th 2024. Stress, histamine & less GABA. Dec 15th (slight) 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: 88%. In hindsight (Apr 1st 2025) I don’t think I’m getting back up to 90% after slitting finger in Nov incl. tetanus jab, life has become slightly harder.

Reasons to be cheerful - most important, but always quite high standard:
Plant, bird & animal life/interaction: 100s per day, see the pick of pics
Human life: (no TT cos of dentist, Skip-Bo Wife )
Environment: (outdoors/fresh air ~15h/d .)
Body: (“Theoretical” energy/nimblenss “30%” () since LDN.)
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Omitting ‘Research’, ‘Lessons in self-care’ and ‘Simplified’, cos no longer helpful.

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”

[JayCS]

2025-01-25 Saturday

Summary:

• Specific notes today: 14:30 Got to watch out with TT altho I don’t feel well at all. 18:00 shop with wife 19:00 shop alone. First shop a strain, couldn’t relax, 2nd shop tried to push thru, making decisions terrible, making me tense up. Not sure why. Wife asked but I couldn’t tell her, which annoyed her, so she started narking around loudly. Doing things alone, like cage was OK.
• Local issues to work on: Elbows tendons (partly by stretching and Traumeel, mainly just waiting and playing etc. left-handed). Beau lines on left thumbnail by minimising water contact. Constipation (+ a inflammation): linseed oil, linseeds, stopping glutathione, t inflammation/pain - no ideas.
• Biggest issues: Usable energy 11% , energy profile ‘very slow’ , TT ? (). Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ~71-72 kg .
• Latest big trigger: Tooth filling Jan 24th(-Mar15th). Surgery with tetanus for slit finger Nov 19th-Jan 8th = 7 weeks.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- great for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. But constipation (me!?) since Dec: apparently from increasing threonate to 2x3g rather than from switching glutathione to liposomal. LDN Jul 18th- 2024 1.5mg for nimbleness .
• Last focal seizure: Dec 15th 2024 +54d! .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Woodpigeon pair cuddling / pair preening – all pigeons are monogamous for years or their whole life

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 ? (❌), talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), usually 32, sometimes 16 jackknives before bed during back exercises (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 89% ❌, SLEEP 7h04 (✅) ('PPA‘: 4 for 10-30' ➔ 2 ❌). Energy profile: 'very slow' with 6h rest, 10h very slow, 0h 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): 8h21 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: h45+7h44-(4+4+=)’ = 8h29-8’ = 8h21.
23:15- 1:47 4’ deep 5:07 4’ -7:44 with a few good ideas, slept deeply.

2) Watching TRIGGERS, esp. of exhaustibility. Dentistry: Today 1st filling which luckily turned out to be one that needed doing anyway. Next I'll need another 2 tiny fillings (postponed from Oct 1st cos of triggers/flares), better without anaesthetic. Surgery with tetanus for slit finger Nov 19th-Jan 8th. Tooth cleaning Aug 14/15th 2024: 12 days. Local anaesthesia: Feb 15th-Apr 28th 2024. Family: Aug 28th/29th-Oct 11th 2024. Talking to 4 docs: May 29th-July 3rd 2024. 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 2024-Jan 8th 2025) Surgery with tetanus for slit finger, 4 doc appts. Energy from 9 to 10% on Dec 1st, from 11 to 14% Dec 8th, but first short table tennis on 12th, Jan 6th: downgrading that to 11-12%. Jan 8th: 16%.
Jan 24th(-Mar15th): tooth filling Jan 24th(-Mar15th), despite it not hurting at all and no anaesthetic, but a histamine surge all the same, causing worse sleep for while and then. long backlash.

(3) DOCS: 3) Tooth filling Jan 24th (causing a 7 week flare). 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: threo seems the 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: Dec 15th (+54d). 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 / 54 Dec 15th 2024. Stress, histamine & less GABA. Dec 15th (slight) 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: 86%. In hindsight (Apr 1st 2025) I don’t think I’m getting back up to 90% after slitting finger in Nov incl. tetanus jab, life has become slightly harder.

Reasons to be cheerful - most important, but always quite high standard:
Plant, bird & animal life/interaction: 100s per day, see the pick of pics
Human life: (TT laughter Skip-Bo Wife )
Environment: (outdoors/fresh air ~15h/d .)
Body: (“Theoretical” energy/nimblenss “30%” () since LDN.)
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Omitting ‘Research’, ‘Lessons in self-care’ and ‘Simplified’, cos no longer helpful.

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”

[JayCS]

2025-01-26 Sunday

Summary:

• Specific notes today: 8:08 washed a, feels slightly less painful. 11:32 TT 1:1 lost closely won easily, had to switch to right hand cos of left elbow playing up a little. 15:10 improved a, not perfect, but only 10% of what it was. Evening OK: screen curfew at 19:00 plus another 1h at 22:00, but pigs and blow drying.
• Local issues to work on: Elbows tendons (partly by stretching and Traumeel, mainly just waiting and playing etc. left-handed). Beau lines on left thumbnail by minimising water contact. Constipation (+ a inflammation): linseed oil, linseeds, stopping glutathione, t inflammation/pain - no ideas.
• Biggest issues: Usable energy 11% , energy profile ‘very slow’ , TT 1:1 (). Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ~71-72 kg .
• Latest big trigger: Tooth filling Jan 24th(-Mar15th). Before that: Surgery with tetanus for slit finger Nov 19th-Jan 8th = 7 weeks.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- great for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. But constipation (me!?) since Dec: apparently from increasing threonate to 2x3g rather than from switching glutathione to liposomal. LDN Jul 18th- 2024 1.5mg for nimbleness .
• Last focal seizure: Dec 15th 2024 +54d! .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Cute li’l yellow-necked mouse still around pinching neighbour’s nuts from birdfood several times a night

Snowberries aren’t just white

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 1:1 (❌), talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), usually 32, sometimes 16 jackknives before bed during back exercises (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 89% ❌, SLEEP 7h04 (✅) ('PPA‘: 4 for 10-30' ➔ 2 ❌). Energy profile: 'very slow' with 6h rest, 10h very slow, 0h 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): 7h04 (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: h22+6h50-(4+4+=)’ = 7h12-8’ = 7h04.
23:38 3:04 4’ 6:25 4’ 6:50 up after deep dozing, too awake. Need to take sleep forwards.

2) Watching TRIGGERS, esp. of exhaustibility. Dentistry: 1st of 3 fillings done Jan 24th (causing a 7 week flare despite no pain and no anaesthetic). Next I'll need another 2 tiny fillings (postponed from Oct 1st cos of triggers/flares), better without anaesthetic. Surgery with tetanus for slit finger Nov 19th-Jan 8th. Tooth cleaning Aug 14/15th 2024: 12 days. Local anaesthesia: Feb 15th-Apr 28th 2024. Family: Aug 28th/29th-Oct 11th 2024. Talking to 4 docs: May 29th-July 3rd 2024. 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 2024-Jan 8th 2025) Surgery with tetanus for slit finger, 4 doc appts. Energy from 9 to 10% on Dec 1st, from 11 to 14% Dec 8th, but first short table tennis on 12th, Jan 6th: downgrading that to 11-12%. Jan 8th: 16%.
Jan 24th(-Mar15th): tooth filling Jan 24th(-Mar15th), despite it not hurting at all and no anaesthetic, but a histamine surge all the same, causing worse sleep for while and then. long backlash.

(3) DOCS: 3) Tooth filling Jan 24th (causing a 7 week flare). 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: threo seems the 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: Dec 15th (+54d). 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 / 54 Dec 15th 2024. Stress, histamine & less GABA. Dec 15th (slight) 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: 86%. In hindsight (Apr 1st 2025) I don’t think I’m getting back up to 90% after slitting finger in Nov incl. tetanus jab, life has become slightly harder.

Reasons to be cheerful - most important, but always quite high standard:
Plant, bird & animal life/interaction: 100s per day, see the pick of pics
Human life: (TT laughter Skip-Bo Wife )
Environment: (outdoors/fresh air ~15h/d .)
Body: (“Theoretical” energy/nimblenss “30%” () since LDN.)
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Omitting ‘Research’, ‘Lessons in self-care’ and ‘Simplified’, cos no longer helpful.

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”

[JayCS]

2025-01-27 Monday

Summary:

• Specific notes today: 11:09 TT 0:2 left, afterwards talking, nauseous. Pain of 3-4, more fatigue and nausea. Talked with neighbor this morning, nauseous after the too. 20:00 Evening OK, brought in 12 buckets of water without problems. 32 jackknives 10 push-ups before bed with no problems to fall asleep directly after, similar the past few days. Washing, drying and creaming a is helping.
• Local issues to work on: Elbows tendons (partly by stretching and Traumeel, mainly just waiting and playing etc. left-handed). Beau lines on left thumbnail by minimising water contact. Constipation (+ a inflammation): linseed oil, linseeds, stopping glutathione, t inflammation/pain - no ideas.
• Biggest issues: Usable energy 11% , energy profile ‘very slow’ , TT 0:2 . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ~71-72 kg .
• Latest big trigger: Tooth filling Jan 24th(-Mar15th). Surgery with tetanus for slit finger Nov 19th-Jan 8th = 7 weeks.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- great for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. But constipation (me!?) since Dec: apparently from increasing threonate to 2x3g rather than from switching glutathione to liposomal. LDN Jul 18th- 2024 1.5mg for nimbleness .
• Last focal seizure: Dec 15th 2024 +54d! .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Yellow-necked fiel mouse again every few night hours for 10-15 mins

Woodpigeon in I think a ewe

Young female blackbird

Young female blackbird waiting to swoop, but the ‘old’ established one is waiting to pounce

Young one

Old one

Snowdrops budding

White flies on the composter, can’t ID them “on the fly”.

Peacock butterfly still hibernating indoors

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 ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), usually 32, sometimes 16 jackknives before bed during back exercises (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 89% ❌, SLEEP 8h33, 50' of that deep dozing ✅ ('PPA‘: 4 for 10-30' ➔ 2 ❌). Energy profile: 'very slow' with 6h rest, 10h very slow, 0h 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): 8h33, 50' of that deep dozing ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: 1h07+7h38-(4+4+4=)’ = 8h45-12’ = .
22:53- 2:05 4’ A3 sore throat calendula closed 2nd w. 32 jackknives 10 push-ups with no problems to fall asleep directly after, similar the past few days. 5:34 4’ bit hot, taking both brown pills 6:43 feeling sick, stomach upset, were the 2 brown pills too much? More almond milk. 4’ or getting up - dozed quite well 7:38 creaming after washing a stopped itch. Discovered a is still moist if I don’t dry it after I’ve washed it, so now definitely drying and creaming.

2) Watching TRIGGERS, esp. of exhaustibility. Dentistry: 1st of 3 fillings done Jan 24th (turned out causing a 7 week flare despite no pain and no anaesthetic). Next I'll need another 2 tiny fillings (postponed from Oct 1st cos of triggers/flares), better without anaesthetic. Surgery with tetanus for slit finger Nov 19th-Jan 8th. Tooth cleaning Aug 14/15th 2024: 12 days. Local anaesthesia: Feb 15th-Apr 28th 2024. Family: Aug 28th/29th-Oct 11th 2024. Talking to 4 docs: May 29th-July 3rd 2024. 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 2024-Jan 8th 2025) Surgery with tetanus for slit finger, 4 doc appts. Energy from 9 to 10% on Dec 1st, from 11 to 14% Dec 8th, but first short table tennis on 12th, Jan 6th: downgrading that to 11-12%. Jan 8th: 16%.
Jan 24th(-Mar15th): tooth filling Jan 24th(-Mar15th), despite it not hurting at all and no anaesthetic, but a histamine surge all the same, causing worse sleep for while and then. long backlash.

(3) DOCS: 3) Tooth filling Jan 24th (causing a 7 week flare, despite not hurting). 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: threo seems the 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: Dec 15th (+54d). 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 / 54 Dec 15th 2024. Stress, histamine & less GABA. Dec 15th (slight) 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: 86%. In hindsight (Apr 1st 2025) I don’t think I’m getting back up to 90% after slitting finger in Nov incl. tetanus jab, life has become slightly harder.

Reasons to be cheerful - most important, but always quite high standard:
Plant, bird & animal life/interaction: 100s per day, see the pick of pics
Human life: (TT laughter Skip-Bo Wife )
Environment: (outdoors/fresh air ~15h/d .)
Body: (“Theoretical” energy/nimblenss “30%” () since LDN.)
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Omitting ‘Research’, ‘Lessons in self-care’ and ‘Simplified’, cos no longer helpful.

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”

[JayCS]

Tuesday, Jan 28th's stub

2025-01-28 Tuesday

Summary:

• Specific notes today:
• Local issues to work on: Elbows tendons (partly by stretching and Traumeel, mainly just waiting and playing etc. left-handed). Beau lines on left thumbnail by minimising water contact. Constipation (+ a inflammation): linseed oil, linseeds, stopping glutathione, t inflammation/pain - no ideas.
• Biggest issues: Usable energy 11% , energy profile ‘very slow’ , TT (). Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ~71-72 kg .
• Latest big trigger: Tooth filling Jan 24th(-Mar15th). Surgery with tetanus for slit finger Nov 19th-Jan 8th = 7 weeks.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- great for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. But constipation (me!?) since Dec: apparently from increasing threonate to 2x3g rather than from switching glutathione to liposomal. LDN Jul 18th- 2024 1.5mg for nimbleness .
• Last focal seizure: Dec 15th 2024 +54d! .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

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 : (❌), talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), usually 32, sometimes 16 jackknives before bed during back exercises (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 89% ❌, SLEEP 7h04 (✅) ('PPA‘: 4 for 10-30' ➔ 2 ❌). Energy profile: 'very slow' with 6h rest, 10h very slow, 0h 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): ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: h+h-(4+4+=)’ = h-’ = h.

2) Watching TRIGGERS, esp. of exhaustibility. Dentistry: 1st of 3 fillings done Jan 24th (turned out causing a 7 week flare despite no pain and no anaesthetic). Next I'll need another 2 tiny fillings (postponed from Oct 1st cos of triggers/flares), better without anaesthetic. Surgery with tetanus for slit finger Nov 19th-Jan 8th. Tooth cleaning Aug 14/15th 2024: 12 days. Local anaesthesia: Feb 15th-Apr 28th 2024. Family: Aug 28th/29th-Oct 11th 2024. Talking to 4 docs: May 29th-July 3rd 2024. 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 2024-Jan 8th 2025) Surgery with tetanus for slit finger, 4 doc appts. Energy from 9 to 10% on Dec 1st, from 11 to 14% Dec 8th, but first short table tennis on 12th, Jan 6th: downgrading that to 11-12%. Jan 8th: 16%.
Jan 24th(-Mar15th): tooth filling Jan 24th(-Mar15th), despite it not hurting at all and no anaesthetic, but a histamine surge all the same, causing worse sleep for while and then. long backlash.

(3) DOCS: 3) Tooth filling Jan 24th (causing a 7 week flare, despite not hurting). 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: threo seems the 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: Dec 15th (+54d). 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 / 54 Dec 15th 2024. Stress, histamine & less GABA. Dec 15th (slight) 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: 86%. In hindsight (Apr 1st 2025) I don’t think I’m getting back up to 90% after slitting finger in Nov incl. tetanus jab, life has become slightly harder.

Reasons to be cheerful - most important, but always quite high standard:
Plant, bird & animal life/interaction: 100s per day, see the pick of pics
Human life: (TT laughter Skip-Bo Wife )
Environment: (outdoors/fresh air ~15h/d .)
Body: (“Theoretical” energy/nimblenss “30%” () since LDN.)
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Omitting ‘Research’, ‘Lessons in self-care’ and ‘Simplified’, cos no longer helpful.

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”

[JayCS]

template

2025-01-29 Wednesday

Summary:

• Specific notes today:
• Local issues to work on: Elbows tendons (partly by stretching and Traumeel, mainly just waiting and playing etc. left-handed). Beau lines on left thumbnail by minimising water contact. Constipation (+ a inflammation): linseed oil, linseeds, stopping glutathione, t inflammation/pain - no ideas.
• Biggest issues: Usable energy 11% , energy profile ‘very slow’ , TT (). Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ~71-72 kg .
• Latest big trigger: Tooth filling Jan 24th(-Mar15th). Surgery with tetanus for slit finger Nov 19th-Jan 8th = 7 weeks.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- great for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. But constipation (me!?) since Dec: apparently from increasing threonate to 2x3g rather than from switching glutathione to liposomal. LDN Jul 18th- 2024 1.5mg for nimbleness .
• Last focal seizure: Dec 15th 2024 +54d! .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

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 : (❌), talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), usually 32, sometimes 16 jackknives before bed during back exercises (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 89% ❌, SLEEP 7h04 (✅) ('PPA‘: 4 for 10-30' ➔ 2 ❌). Energy profile: 'very slow' with 6h rest, 10h very slow, 0h 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): ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: h+h-(4+4+=)’ = h-’ = h.

2) Watching TRIGGERS, esp. of exhaustibility. Dentistry: 1st of 3 fillings done Jan 24th (turned out causing a 7 week flare despite no pain and no anaesthetic). Next I'll need another 2 tiny fillings (postponed from Oct 1st cos of triggers/flares), better without anaesthetic. Surgery with tetanus for slit finger Nov 19th-Jan 8th. Tooth cleaning Aug 14/15th 2024: 12 days. Local anaesthesia: Feb 15th-Apr 28th 2024. Family: Aug 28th/29th-Oct 11th 2024. Talking to 4 docs: May 29th-July 3rd 2024. 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 2024-Jan 8th 2025) Surgery with tetanus for slit finger, 4 doc appts. Energy from 9 to 10% on Dec 1st, from 11 to 14% Dec 8th, but first short table tennis on 12th, Jan 6th: downgrading that to 11-12%. Jan 8th: 16%.
Jan 24th(-Mar15th): tooth filling Jan 24th(-Mar15th), despite it not hurting at all and no anaesthetic, but a histamine surge all the same, causing worse sleep for while and then. long backlash.

(3) DOCS: 3) Tooth filling Jan 24th (causing a 7 week flare, despite not hurting). 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: threo seems the 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: Dec 15th (+54d). 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 / 54 Dec 15th 2024. Stress, histamine & less GABA. Dec 15th (slight) 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: 86%. In hindsight (Apr 1st 2025) I don’t think I’m getting back up to 90% after slitting finger in Nov incl. tetanus jab, life has become slightly harder.

Reasons to be cheerful - most important, but always quite high standard:
Plant, bird & animal life/interaction: 100s per day, see the pick of pics
Human life: (TT laughter Skip-Bo Wife )
Environment: (outdoors/fresh air ~15h/d .)
Body: (“Theoretical” energy/nimblenss “30%” () since LDN.)
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Omitting ‘Research’, ‘Lessons in self-care’ and ‘Simplified’, cos no longer helpful.

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”