JayCS’s Fibro Blog

[JayCS]

2024-10-07 Monday - slight focal seizure from interchanging with a 2nd (bigger, but older) laptop

Summary:

• Specific notes today: 14:01 focal seizure possibly cos I’m now interchanging two laptops, but have to remember to save my various blogs centrally, bit of a mindscrew, calls for better habituation. But my bigger older one has turned out better and quicker for pics. 19:10 2:0, mate playing worse today, wasn’t me playing well.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew OK (), late bed cos of: wife & pigs & 20’ screen procrastination (). Sleep .
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 2:0 (). Listening 5-10’ ➔ pain of 4-5 .
• Latest big trigger Triggers: Fatigue flare with some depression from meeting family members Aug 28th/29th . Easing Sep 17th, considering TT better.
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep , fog (), tension (/), jitter (/) - not enough!
• Last focal seizure: Oct 7th (slight) (+12d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Dunnock, usually hiding pecking on the ground, but mine this year are doing it all, have a natural talent to not only stand on the fat ball ring…

but also slip into the ring and comfortably eat from there. Something I thought only my garden rodents could do…

This is how the slick great tit does it

And this is a different dunnock from the above, cos it’s blue grey I think a male, above a female, the one inside maybe the male, but a twig is fuzzying the view.

Wasps flying around the ivy flowers

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 2:0 (moving/talking/counting 15%) (❌), talking/listening 5' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 86% ❌, SLEEP 8h25, 15' of that deep doze ✅ ('PPA‘: 2 ✅). Energy profile: 'very slow‘ with '5h rest‘, 6h very slow, 5h 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): h, ' of that deep doze (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:15-7:55. Sum: h45+7h55-(3+4+4+4=)15’ = 8h40-15’ = 8h25, 15’ of that deep doze.
1:41 3’ 2:52 4’ oils cos bite playing up, 5:39 4’ oils Traumeel 5:47 NSDR cos thoughts 5:48 helmet headache praps cos of marmite -7:55

2) Watching TRIGGERS, esp. of exhaustibility. Next I'll need 4 tiny fillings (aim: Oct), definitely without anaesthetic. Family members: Aug 28th/29th-Sep (17th...). Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd from. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th.

(3) DOCS: 3) Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again. Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure today, Oct 7th (slight) (+12d). Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 (Oct 7th 2024). Stress, histamine & less GABA. Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified:

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-08 Tuesday: Shuffling a lot. Balance.

Summary:

• Specific notes today: 9:29 did a lot in one go (pigs, dishwasher): possible, but all really hard. 9:30 3 things I can’t find, esp. that doc report, not where else it could be, so back to where it should be (that being 70% likely), and there it was 10:38 in an envelope rather than a sheet of paper I’d been looking for. 9:39 Empty glass fell from tray on stone steps, as if I hadn’t enough on my plate - or off of it . 12:59 blog entries of the last days show why I’m bad: Colleague, jittery, pushing thru with cortisol, 2 small seizures. Correct to postpone dentist, risky to do cardio tomorrow. Burnt tongue, praps from marmite. 15:15 shuffling all day, OK if I don’t move, as soon as I do my energy ends . Downstairs is OK, nimble, that’s the LDN, but upstairs only the first 3-4 steps are fairly normal and 20 steps take over a minute. 15:16 but managing to fill dishwasher in stints, and half emptying it now and cooking quinoa. 16:49 TT 0:2 ➔ 2:2, lost close, won fairly easily, made sure I didn’t walk much, hardly talking. Shouting at kids that had made a mess on a playground bench astonishingly wasn’t stressful at all , unlike for my mate, but on another level I have to watch out, dizzy head and watch I don’t get a seizure. I did it more as a test and cos I felt like it. 16:58 physical imbalance is body rather than head. or as well as. I have to use my arms till I’ve found where my balance is. 2:02 bladder muscles taut, pain 1: GABA? Seizures too?
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew = (), late bed cos of: wife, photos, pigs (). Sleep ().
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 2:2 (). Listening 5-10’ ➔ pain of 4-5 .
• Latest big trigger Triggers: Fatigue flare with some depression from meeting family members Aug 28th/29th . Easing Sep 17th, considering TT better.
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep , fog (), tension (/), jitter (/) - not enough!
• Last focal seizure: Oct 7th (slight) (+12d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Wasps relishing ivy blossoms

Dunnock, male I think, flexible as ever - in the bird house

Fungi behind the garden gate, I want life in every nook and cranny, esp. unexpected forms and places.

Not sure if these are red ants, but they can keep their wings in winter

Unlikely pair: Pretty black spider next to a pretty banded snail

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 2:2 (moving/talking/counting 15%) (✅), talking/listening 5' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 86% ❌, SLEEP 8h14 ✅ ('PPA‘: 2 ✅). Energy profile: 'very slow‘ with '5h rest‘, 6h very slow, 5h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 8h14 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:10-7:41. Sum: h50+7h41-(5+4+4+4=)17’ = 8h31-17’ = 8h14.
0:45 5’ 2:02 4’ bladder muscles taut, pain 1: GABA? Seizures too? 3:42 4’ 5:45 4’ calendula & umckaloabo cos of wife’s sore throat.

2) Watching TRIGGERS, esp. of exhaustibility. Next I'll need 4 tiny fillings (aim: Oct), definitely without anaesthetic. Family members: Aug 28th/29th-Sep (17th...). Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd from. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th.

(3) DOCS: 3) Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again. Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 7th (slight) (+12d)(❌). Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 (Oct 7th 2024). Stress, histamine & less GABA. Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified:

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-09 Wednesday

Summary:

• Specific notes today: 8:41 Wife has turned out with testing positive for covid, so good we started being careful yesterday - distancing, umckaloabo, calendula essence, and now masking and disinfecting too. I tested negative, but last time I did too, yet had loads of symptoms. 13:46 cardio very nice again, whatever I’d need she’d prescribe, mitochondria/ATP she guesses too. Leg veins good, SBP 180, so need to check, but I doubt it (taking jeans off, talking, measured thru 2 hoodies…) 17:42 very soft stools 17:15, can’t imagine it’s from increasing mag threo from 2x1.2g to 2x1.35g. 17:49 getting hot I think is from keeping thick hoodie on cos of rain and being careful. 18:17 feel strangely light, so joked if I get covid I may get better (unlike last time). 18:52 forgot 2nd meal supps, so need to move everything later (which means 3x0.6g GABA inside of 3h). 19:23 after 20’ shop and getting 13 buckets of rain out of the garden I’m still feeling kind of “well in my limbs” for an hour or so, that’ll be the LDN and praps some cortisol, doubt it’s from the late supps. 23:36 desperate to look at more photos, don’t seem to have had enough time for it, so enjoying going late.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew () - late long, but felt the need, it’s OK , late bed cos of: wife, photos, pigs (). Sleep ().
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 2:0 (). Listening slightly better, 5-10’ ➔ pain of 4 ().
• Latest big trigger Triggers: Fatigue flare with some depression from meeting family members Aug 28th/29th . Easing Sep 17th, considering TT better.
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep , fog (), tension (/), jitter (/) - not enough!
• Last focal seizure: Oct 7th (slight) (+12d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Wren - hiding?

Nope:

Magpie

Robin

Not sure if this is an Asian/Harlequin, cos there’s no M / W shape in face, but it has 19 spots, but hasn’t got a 19 spot face:

Definitely an Asian ladybird with a larva of one. Surprising interaction, cos baby doesn’t need feeding. Looking up it turns out if there’s not enough aphids etc. around they do eat larvae, incl. their own - cannibals. In this case tho they just turned to the side.

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 2:0 with 2nd mate in rain (moving/talking/counting 15%) (✅), talking/listening 5' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 86% ❌, SLEEP 7h45, 60'? of that deep doze (✅), ('PPA‘: 2 ✅). Energy profile: 'very slow‘ with '5h rest‘, 6h very slow, 5h 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): 7h45, 60'? of that deep doze (✅), QCS at 8:30 QCS = very quick very cold shower (22 issues under control).

Sleep 23:45-7:50. Sum: h15+7h50-(5+5+5+5=)20’ = 8h08-20’ = 7h45, 60’? of that deep doze.
1:26 5’ 2:51 5’ (felt 3rd break, but can’t be), brilliant dream like an opera or play of someone brilliantly humiliating someone else pretentious, interesting, as if it weren’t from myself. 5:53 5’ BP 116/80-59 despite moving before, pressing the stupid gadget etc. so probably then deep dozing, so 6:48 5’ quicker, best plugs/NSDR - didn’t catch much of it, but still didn’t feel my sleep was that deep.

2) Watching TRIGGERS, esp. of exhaustibility. Next I'll need 4 tiny fillings (aim: Oct), definitely without anaesthetic. Family members: Aug 28th/29th-Sep (17th...). Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd from. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th.

(3) DOCS: 3) Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again. Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 7th (slight) (+12d)(❌). Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 (Oct 7th 2024). Stress, histamine & less GABA. Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified:

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-10 Thursday: Speed-shuffling indoors, faster cycling possible tho, strange dreams.

Summary:

• Specific notes today: 8:36 so after moving a lot 136/92-68 is again brilliant. 8:37 slightly overheated, praps “feverish”, so def. a QCS, and keeping a watch on other symptoms. 8:54 firm stools, 73.2kg, again confirmed less than 74kg. 9:53 ironic that my wife with her severe bout of covid is complaining how difficult movements are now, hard to get up - when she says it she grins sheepishly and knowingly, so I know I can too. 10:43 pretty liquid stools altho I reduced to 1.2g, and also had firm this morning before I took the threonate. 13:03 Forgot 1st meal supps again, this is partly cos I left the box at the side instead of in full view as usual, so have to delay again and never rely on my memory. 17:57 TT OK, fast cycling there on my faster bike almost no problem, walking OK a bit. But at the same time indoors I’m now almost always speed-shuffling (like beginner’s ice-skating) to push thru longer. 4:57 strange dreams (esp. being touched woke me up), then awake twice between 5 and 7 without needing loo.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew = (), willingly late bed (). Sleep .
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 3:1 (). Listening 5-10’ ➔ pain of 4-5 .
• Latest big trigger Triggers: Fatigue flare with some depression from meeting family members Aug 28th/29th . Easing Sep 17th, considering TT better.
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, trying 2x1.35g Oct 9th-.
• Last focal seizure: Oct 7th (slight) (+12d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Jay

Blue Tit

Magpie

Woodpigeon moods

Hornet young queen buries herself into her winter home, first flew at me to check out the situation, then took about 2h, at least only half in after 1h.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 3:1 - praps lost from right elbow (moving/talking/counting 15%) (✅), talking/listening 5' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 86% ❌, SLEEP 8h01, 20' of that deep doze ✅ ('PPA‘: 2 ✅). Energy profile: 'very slow‘ with '5h rest‘, 6h very slow, 5h 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): 8h01, 20' of that deep doze ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:20-7:33. Sum: h40+7h33-(4+8+=)12’ = 8h13-12’ = 8h01, 20’ of that deep doze.
1:47 4’ OK except praps pee muscles. 2:04 inexplicable palpitations & feeling strange. 2:07 107/75-57 100%. 2:08 NSDR instead of QCS - helped! 3:56 4’. 4:57 weird dreams, gasped out cos someone seemed to touch me. Like watching a film, not me, threo? -7:33 after deep dozing, aber between 5 and 7 awake 1’ twice, but no pee nec.

2) Watching TRIGGERS, esp. of exhaustibility. Next I'll need 4 tiny fillings (aim: Oct), definitely without anaesthetic. Family members: Aug 28th/29th-Sep (17th...). Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd from. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th.

(3) DOCS: 3) Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again. Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 7th (slight) (+12d)(❌). Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 (Oct 7th 2024). Stress, histamine & less GABA. Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified:

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-11 Friday

Summary:

• Specific notes today: 11:04 frequent pee cos it’s colder and I forgot warmer shoes. 17:15 seizure-ish after wife chided me for wearing a mask on the balcony when she was close, making me feel really shaky, 17:52 uptight again, caused a 1’ seizure, better for it. 18:04 lmbalance during TT 2:2, after stress by using a different bat, and having to get used to it for 2 games.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew 0 (), late bed cos of: wife, pigs ➔ photos (). Sleep .
• Biggest issues: Usable energy 15% (), energy profile ‘very slow’ , TT 2:2 (). Listening 5-10’ ➔ pain of 4-5 .
• Latest big trigger Triggers: Fatigue flare with some depression from meeting family members Aug 28th/29th . Easing Sep 17th, considering TT better.
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, trying 2x1.35g Oct 9th-.
• Last focal seizure: Oct 7th (slight) (+12d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

4x female blackbirds today, or at least one young one and one old one bathing and looking up

4 woodpigeons

Dunnock on high as if singing in the summer

Great Tit

2 common wasps

Carrion crow bellowing to be heard, getting no answer

The older female blackbird

Young female blackbird with two robins

Woodpigeon

Closed in for the winter: yesterday’s young queen hornet

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 2:2 first with older bat (moving/talking/counting 15%) (✅), talking/listening 5' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 85% ❌, SLEEP 8h37, deep doze ✅ ('PPA‘: 2 ✅). Energy profile: 'very slow‘ with '5h rest‘, 6h very slow, 5h 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): 8h37, 0 of that deep doze ✅, QCS at 9:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:22-8:16. Sum: h39+8h16-(4+7+1+6=)18’ = 8h55-18’ = 8h37, 0 deep doze.
2:40 4’ sore throat: calendula. 5:41 7’ frontal headache (till 9), but not sinus. Between awake 1’, but no need to pee, plugs cos of party passersby. Woke up from dream: 3m high pillar of books or something, but bed below to land on, talking to nice people around me how to get back down, not drastic, and feeling fairly well, saying to them I won’t be taking as long as usual to get things done. Same time I had loads more cotton bags I had to pack with electronic stuff and such than thought (as usual…). 5:44 Imbalance. Bit of a frontal headache till 9, not sinus, but umcka + calendula more regularly.

2) Watching TRIGGERS, esp. of exhaustibility. Next I'll need 4 tiny fillings (aim: Oct), definitely without anaesthetic. Family members: Aug 28th/29th-Sep (17th...). Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd from. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th.

(3) DOCS: 3) Giving up higher disability for a time, too strenuous, too little gain started with GP (Apr 25th), cardio report (Jun 26th) allergist report (Aug 21st), so next GP again. Click for latest (Aug 21st) details.)

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 7th (slight) (+12d)(❌). Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 (Oct 7th 2024). Stress, histamine & less GABA. Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified:

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-12 Saturday

Summary:

• Specific notes today: TT 2:2. Rest of the day bit dizzy & slightly seizure-ish. TT mate recommended I need to tell my wife her chiding caused a seizure. I did, and she was first peeved, then had another “go”, not at me, but generally feeling pent up from the distancing, but that increased my seizure-ishness again, later she was better. Again fast cycling, incl. in the evening, after 10’ managing to go upstairs pretty normally, feels great! My wife asks why, first guess is out of the last flare, 2nd that inklings of her covid are helping my system - doubt that tho. 19:22 But whilst cycling I got a fright from a light reflection that came towards me in the dark, so I must have been a bit jittery and then more so. Morning stools OK , but 71.9kg .
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew , late bed cos of: wife, photos, pigs (). Sleep (). Shouldn’t ever do a q6-relax at night any more, and keep most windows closed Fr/Sat night.
• Biggest issues: Usable energy 17% (), energy profile ‘very slow’ , TT 2:2 (). Listening 5-10’ ➔ pain of 4-5 .
• Latest big trigger: Flare from family Aug 28th/29th , easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, trying 2x1.35g Oct 9th-.
• Last focal seizure: Oct 11th (+4d) (praps from delaying GABA twice).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Toadstool: fly agaric/amanita

Great Tit

Short-toed tree creeper: fuzzy, but directly in front of me

Shaggy inkcap

Female mallard

Grey heron

Cormorants with mallards

Mallards bathing

Young moorhen

Coot

Great woodpecker then hammered a second hole

Carrion crow doing its business

Wasps on ivy blossoms

Robin

Blue Tit

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 2:2 - won 1st & 4th easily, lost not too close (moving/talking/counting 15%) (✅), talking/listening 5' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving: better in the evening, shop 10', then cycling another 10' seemingly brilliant with no backlash ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 32 quick jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (❌), EXHAUSTIBILITY 83% ❌, SLEEP 8h10, 1h of that deep doze (✅) ('PPA‘: 2 ✅). Energy profile: 'very slow‘ with '5h rest‘, 6h very slow, 5h 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): 8h10, 1h of that deep doze. (✅), QCS at 8:30 QCS = very quick very cold shower (22 issues under control).

Sleep 22:57-7:45. Sum: 1h03+7h45-(21+3+3+3+2+4+2+=)38’ = 8h48-38’ = 8h10, 35+20+5’ = 1h of that deep doze.
23:54 Traumeel. q6 -0:15 - deep dozed so 0:49 NSDR & plugs. 0:51 chatterbrain telling me (how) to help mate tidy his paperwork up so he can find his driving license. 1:11 Party passersby so NSDR didn’t work, closed window. NSDR - worked after 5’ 1:53 3’ 3:11 3’ without pills. +2’ for windows, so pills cos of stomach pang. 5:13 4’ passersby. 5:53 2’ 7:45 bit frontal headache, no sinus or throat, feel OK.

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 11th (+4d) ❌❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 (Oct 11th 2024). Stress, histamine & less GABA. Oct 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified:

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-13 Sunday

Summary:

• Specific notes today: 14:55 jittery while cooking quinoa and before that too. 16:34 very exhausted after semi-cleaning balcony 10’ and things falling off my tray. Dreams…
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew , late bed cos of: wife, I’d done everything early (). Sleep ().
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT n/a. Music listening 5-10’ ➔ pain of 4-5 (discomfort, no enjoyment). But phoning with a good mate for 30’ ➔ 85%/4 ! Weight 72.5kg (down from 82, then 78, then 75, then 74). 7:48 Frontal headache gone after first drinking.
• Latest big trigger: Flare from family Aug 28th/29th , easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, trying 2x1.35g Oct 9th-.
• Last focal seizure: Oct 11th (+4d) (praps from delaying GABA twice).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
Peregrine

Grey geese

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 30' ➔ 85%/4 (✅), music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅, once (❌) at night), body fog (✅), 16 (not 32) jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 86% ❌, SLEEP 7h26, 1h30? of that deep doze cos of stretching elbow during sleep - good for my elbows, now do it in daytime instead...? O.o (✅) ('PPA‘: 2 ✅). Energy profile: 'very slow‘ with '5h rest‘, 6h very slow, 5h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 7h28, 1h30? of that deep doze cos of stretching elbow during sleep (✅), QCS at 8:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:15-6:53. Sum: h45+6h53-(4+4+4=)12’ = 7h38-12’ = 7h68, 1h30? of that deep doze cos of stretching elbow during sleep.
0:31 3’ 1:56 4’ dreaming of enormous things like a tractor on a gigantic transporter (over-vivid and overdrawn like a comic) overwhelming me seizure-ish-wise. 3:23 4’ My dreams are quite a lot of déjà vu despite the things not being realistic. 5:21 4’ frontal headache in 2nd part of the night could well be thirst, so good to drink as soon as I get up.

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 11th (+4d) ❌❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 (Oct 11th 2024). Stress, histamine & less GABA. Oct 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified:

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-14 Monday

Summary:

• Specific notes today: 12:16 out too long, hurting 5, despite being able to cycle quick, so still a “radius” of 10’. When I listen thru my voice notes, the nature ones are cheerful and excited, the health ones seem down, but that’ll be cos I often dictate when not feeling well.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew = , not late bed cos of: wife (). Sleep .
• Biggest issues: Usable energy 16% (), energy profile ‘very slow’ , TT 3:1 (). Listening 5-10’ ➔ pain of 4-5 . Weight (ideally 78-80kg): remembered, then forgot.
• Latest big trigger: Flare from family Aug 28th/29th , easing Sep 17th, fairly OK Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, trying 2x1.35g Oct 9th-: stools OK.
• Last focal seizure: Oct 11th (+4d) (praps from delaying GABA twice).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Great tit

Jay

Female Blackbird

Wren

Jackdaw

Collared dove in tree and on roof fluffed up

Squirrel

Moon

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 3:1, effortlessly, only lost first game cos I hadn't brushed any of many leaves off of my side (moving/talking/counting 15%) (✅), talking/listening 5' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 8h17, 23' of that deep doze ✅ ('PPA‘: 2 ✅). Energy profile: 'very slow‘ with '5h rest‘, 6h very slow, 5h 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): 8h17, 23' of that deep doze ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:40-7:11. Sum: 1h20+7h11-(5+5+4=)14’ = 8h31-14’ = 8h17, 23’ of that deep doze.
0:22 5’ 3:08 5’ 6:43 4’

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 11th (+4d) ❌❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 (Oct 11th 2024). Stress, histamine & less GABA. Oct 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified:

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-15 Tuesday

Summary:

• Specific notes today: 9:18 feverish pukey whilst writing about finding a dead rat i the garden 30’ ago, strange cos I didn’t realise it could be a problem for me. Felt better for retching, still feverish ill. But when I distracted it was better, when I tried to write about it again, it started a bit. Burying later and rest of the day almost no problem - such a pretty thing, so unfair for them that they can make us ill and get too much. So wasn’t covid. 10:59 So cold I needed a HWB + tea like my wife suggested. 16:52 Last 1h+ on Balcony had to pee 4x, cos clogs too cold, need to wear winter shoes there. TT 2:1 - lost first by far, rest easy, 4th stopped cos of mate. 19:11 seizure-ish, avoided one 3x by stopping what I was doing. Why? GABA? 23:04 cos not feeling well stopped nature notes and worked on cormorant photos instead, fell much better for it. Sleep seemed shallow, 6 breaks.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel. Constant problem, but keep keeping it down.
• Habits to work on: Screen curfew (), late bed cos of: photos (). Sleep ().
• Biggest issues: Usable energy 17% (), energy profile NOW more ‘slow’ (), TT 2:1 (). Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): ? kg.
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, trying 2x1.35g Oct 9th-.
• Last focal seizure: Oct 11th (+4d) (praps from delaying GABA twice).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

180 migrating Woodpigeons

White-fronted geese and others migrating (or is it adult and young ones? Unclear)

Woodpigeon, young I think

Young female Blackbird making a mess of moss, which I then tidy up so she can do it again

Cranes migrating

Tiny snail

Dead rat’s face… cute, but got a problem, and one less (cat?) didn’t help, so I had to change how I feed the birds…

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 (moving/talking/counting 15%) (✅), talking/listening 5' ➔ 80%/4, bit better ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌) - better, cycling still good all the time up to 10', balance (✅), body fog (✅), 16, not 32, jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 83% ❌, SLEEP 7h47, ? of that deep doze (✅) ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 7h47, ? of that deep doze (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:09-7:21. Sum: h51+7h21-(5+4+4+4+3+4=)24’ = 8h12-24’ = 7h47, ? of that deep doze.
0:22 5’ 1:06 4’ 2:08 4’ 3:31 4’ - from 0 apigenin or 0 curfew? 4:59 3’ praps shallow, but dreaming a lot. 6:23 4’ hardly frontal headache. Curfew!

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 11th (+4d) ❌❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 (Oct 11th 2024). Stress, histamine & less GABA. Oct 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified:

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-16 Wednesday

Summary:

• Specific notes today: 10:12 Decided to use LDN intermittently, every 2 days, not today, atm feeling quite well after 2 shops, cleaning pigs and balcony pot. Got to cut down on noting all nature experiences, what I hear & see in the middle of the garden is just too much. 11:11 avoided focal seizure by stopping what I was doing and (strangely, cos usually stress) writing a text msg. 23:35 Did too much on files, bad curfew, but “I’m gonna sleep tight” (and I did!).
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew , late bed cos of: photos (). Sleep 7h26 ().
• Biggest issues: Usable energy 17% (), energy profile NOW more ‘slow’ (), TT 3:1 (()). Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): 71.2kg - all time low that beats the all time low 72.5 the other day.
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, trying 2x1.35g Oct 9th-.
• Last focal seizure: Oct 11th (+4d) (praps from delaying GABA twice).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Male and female Peregrine with prey

Squirrel enjoying Turkish hazel that I’d got for him so much that he’s running to and around and under me to get, eat and hide it.

I’m decreasing the amount of pics now unless someone asks me to keep it up.
I’d easily be up to date with the text part of the blog if I didn’t have so many pics per day I want to work thru.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 3:1 (moving/talking/counting 15%) (✅), talking/listening NOW 10' ➔ 80%/4 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), didn't try jackknives, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 83% ❌, SLEEP7h26, +10' doze: 2 breaks (✅) ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 7h26, +10' doze: 2 breaks (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:40-7:16. Sum: h20+7h16-(++=)’ = 7h36-10’ = 7h26, +10’ doze. 1:18 5’ 4:37 5’ . 3rd GABA + 3rd passiflora (by mistake).

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Very seizure-ish, but prevented one from coming by stopping what I was doing/thinking. Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 11th (+4d) ❌❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 (Oct 11th 2024). Stress, histamine & less GABA. Oct 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified:

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-17 Thursday

Summary:

• Specific notes today: Someone came to look at 2 things in the house for the landlord who wasn’t quite legitimate to do so, and first I complied, but it took too long and stressed me, so I started getting angry, my wife helped me get him out quicker, but it really exhausted me emotionally then. I shouldn’t have complied, but was unprepared, and that was the real problem, the fault of the ex-landlord (father of the new ones). Energy still OK, but sort of feverish. 8:02 Cramps in right calf last sleep break, and in left foot getting up, so increasing threonate.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel. Difficult one this time.
• Habits to work on: Screen curfew , late bed cos of: photos (). Sleep .
• Biggest issues: Usable energy 16% (), energy profile NOW more ‘slow’ (), TT 2:2 (()). Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): 71.5 kg , better than 71.2 yesterday .
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, trying 2x1.35g Oct 9th-.
• Last focal seizure: Oct 11th (+4d) (praps from delaying GABA twice). Again managed to prevent a few this morning.

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
To be added later and then linked to.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 2:2 (moving/talking/counting 15%) (✅), talking/listening NOW 10' ➔ 80%/4 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (❌), body fog (❌), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 7h58 ✅ ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 7h58 ✅, QCS at 9:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:45-7:57. Sum: h15+7h57-(8+4+3=)15’ = 8h13-15’ = 7h58
1:11 8’ 3:29 4’ 6:43 3’

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 11th (+4d) ❌❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 (Oct 11th 2024). Stress, histamine & less GABA. Oct 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified:

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-18 Friday

Summary:

• Specific notes today: TT 2:2 Won 1st & 4th (close). Met with 2 mates for 5’ at midday. Conversing is much harder than doing something. 18:50+22:44 Stools slightly liquid, but the current eggs (cheapest organic) don’t seem good for me, might not be from taking another 450mg mag threo before 1st meal (so early). 72.6kg. 0:36 6’: calendula on inflammation on 2nd right toe. 3:06 back pain, hanging caused cramp in right upper leg. Increase exercises? Strongly arching back helped.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew , late bed cos of: photos (). Sleep .
• Biggest issues: Usable energy 16% (), energy profile NOW more ‘slow’ (), TT 2:2 (()). Music 5’ ➔ pain of 5 , people 5’ 5 . Weight after sleep (ideally 78-80kg): 72.6kg .
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, trying 2x1.35g Oct 9th-. +0.45g today had gut sfx.
• Last focal seizure: Oct 11th (+4d) (praps from delaying GABA twice).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
To be added later and then linked to.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 2:2 (moving/talking/counting 15%) (✅), talking/listening 5' ➔ 80%/5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 8h12 ✅ ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 8h12 ✅, QCS at 8:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:10-7:41. Sum: h50+7h41-(6+4+5+4=)19’ = 8h31-19’ = 8h12

0:36 6’: calendula on inflammation on 2nd right toe.
1:46 4’ sleep good despite party passersby, fells like I only hear them when I’m already awake.
3:06 5’ up cos of back pain, hanging caused cramp in right upper leg. Props increase exercises? Strongly arching back helped.
6:05 dud VN, why? 4’. 6:08 slight diarrhea at 3 and now. No frontal headache.

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 11th (+4d) ❌❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 (Oct 11th 2024). Stress, histamine & less GABA. Oct 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ()) - haven’t been correcting this lately, but it’s better with more Mg.
Simplified:

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-19 Saturday

Summary:

• Specific notes today: 17:03 Took +.25g mag threo this morning, only slightly liquid stools seems OK, let’s see. Dangerous game. Really I should additionally order mag malate additionally to get full amount of magnesium. 17:04 1:3 - lost likely cos of wet table, and my mate using puddles and leaves on the table to win, I was playing OK. 1:03 bit cold, left string of right calf hurting from the cramp last night, so Traumeel on it. 8:06 queasy gut, but stools OK. Red 2nd right toe bit better, but/so still tea tree oil at least 2x/d, seems to be helping.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew , late bed cos of: photos . Sleep ().
• Biggest issues: Usable energy 16% (), energy profile NOW more ‘slow’ (), TT 1:3 (()). Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): 71.6 kg .
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, trying 2x1.35g Oct 9th-.
• Last focal seizure: Oct 11th (+4d) (praps from delaying GABA twice).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
To be added later and then linked to.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 1:3 (moving/talking/counting 15%) (✅), talking/listening 5' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 32 jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 7h23 (✅) ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 7h23 (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:27-7:04. Sum: h33+7h04-(10+4+=)14’ = 7h37-14’ = 7h23.
1:03 10’ bit cold, left string of right calf hurting from the cramp last night, so Traumeel on it. Nature notes. 5:31 4’ 7:04 too alert.

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 11th (+4d) ❌❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 (Oct 11th 2024). Stress, histamine & less GABA. Oct 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified: -

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-20 Sunday

Summary:

• Specific notes today: Nauseous: 13:17 Feel sick, not sure why, threonate? 22:33 Nauseous in intervals, depending on what I’m doing, all day, sometimes as if I were gonna puke soon (like the other day half an hour after finding the dead rat in the garden).
  Toe: 21:44 Toe worse in the evening: red, hurting, burning. 10:02 Better, maybe worse in the evenings.
  Imbalance: 22:43 Brushing my teeth I fell first backwards, then forwards, with no trigger, no dizziness, just having lost sense of balance again. Different, normally I fall to on side, usually right. Associated with the nausea?
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew OK-ish , earlier bed cos got things done early, including guinea pig cage, cos my wife was out to a comedy show with a friend.
  . Sleep .
• Biggest issues: Usable energy 17% (), energy profile NOW more ‘slow’ (), TT n/a. Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): 72.6kg ().
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, trying 2x1.35g Oct 9th-, trying 2x1.55g Oct 19th-.
• Last focal seizure: Oct 11th (+4d) (praps from delaying GABA twice).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
To be added later and then linked to.

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%/5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16, not 32, jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 83% ❌, SLEEP 8h53, some of that deep doze ✅ ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 8h53, some of that deep doze ✅, QCS at 9:50 QCS = very quick very cold shower (22 issues under control).

Sleep 22:49-7:58 . Sum: 1h11+7h58-(4+4+4+4=)16’ = 9h09-16’ = 8h53, some of that deep doze.
23:51 4’ imbalance
2:03 4’ slight imbalance, toe not too bad.
3:46 4’ imbalance, right calf hurting a bit again.
6:23 4’ - thoughts of what to do.
7:58 can’t have been just deep dozing, but wasn’t as awake as the past days, altho I heard cars and passersby quite a lot.

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 11th (+4d) ❌❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 (Oct 11th 2024). Stress, histamine & less GABA. Oct 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified: -

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-21 Monday

Summary:

• Specific notes today: 20:40 seizure-ish 5’ after sth. fell down whilst preparing a meal, for about 30’, had to keep distracting from certain thoughts, things that caught my attention etc. Wife suggested I don’t work so hard at my blogs, put in some breaks. Dunno if it’s that, but I like the idea. 7:21 feeling quite OK in all respects, and when my wife asked and I said that, she nod-nod-wink-winked: like yeah. Toe + elbow slightly better.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew (), not too late bed cos of: photos (). Sleep ().
• Biggest issues: Usable energy 16% (), energy profile NOW more ‘slow’ (), TT 3:1 (()). Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): 71.8kg .
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems.
• Last focal seizure: Oct 11th (+4d) (praps from delaying GABA twice).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
To be added later and then linked to.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT : (moving/talking/counting 15%) (✅), talking/listening 10' ➔ 80%/5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 8h06 ✅ ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 8h06 ✅, QCS at 7:30 QCS = very quick very cold shower (22 issues under control).

Sleep 23:00-7:21 Sum: 1h+7h21-(3+4+4+4=)15’ = 8h21-15’ = 8h06
22:55 45’ pics,
0:34 3’ imbalance
1:55 4’ „
4:33 4’ „. Elbow stinging a bit, but toe is OK.
6:17 4’ plugs.

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 11th (+4d) ❌❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 (Oct 11th 2024). Stress, histamine & less GABA. Oct 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified: -

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-22 Tuesday

Summary:

• Specific notes today: 15:56 Struggling to avoid seizures today. Being triggered constantly by some thoughts, which I can distract from, but it’s hard work. 16:17 about the 6th-7th time, now I get one, not quite possible to control my mouth muscles, mouth opens fairly widenly. Praps letting it come will help? First brain attacks, then …. Stutter … my hand shakes not brain, then again brain quick. Maybe like this cos I’ve been trying to prevent it. What do I do? Increase GABA? 17:15 TT 3:1, lost the first game, won the rest easily, didn’t get a seizure although I expected one. 19:15 Been taking LDN on and off every 2nd day, maybe that’s the cause. So going back to daily for this 6-day-batch of supps. But there were a few seizures before I did that, so may not be the main reason. I’m pretty sure I took the LDN yesterday and not the day before. 23:08 Feeling better in the evening, screen curfew from 19:00-21:30, then did another hour or so looking at the next photos (and also changing the wild camera outside to photo & film).
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew = (), late bed cos of: photos (). Sleep ().
• Biggest issues: Usable energy 16% (), energy profile NOW more ‘slow’ (), TT 3:1 (()). Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): kg .
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Tried intermittent dosing, leaving out the 1.5mg on I think Oct 16th, 18th, 20th and 22nd, and guessing the seizure-“attacks” are from that. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems.
• Last focal seizure: Oct 22nd (+11d) (praps from intermittent dosing of LDN the past 6 days?).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
To be added later and then linked to.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 3:1, lost the first game, won the rest easily, didn’t get a seizure although I expected one (moving/talking/counting 15%) (✅), talking/listening 10' ➔ 80%/4 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16? jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 83% ❌, SLEEP 7h08, 20' of that deep doze (✅) ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 7h08, 20' of that deep doze (✅), QCS at 7:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:13-6:29. Sum: h47+6h29-(3+5+=)8’ = 7h16-8’ = 7h08, 20’ of that deep doze.

, +20’ of that deep doze.
1:44 3’ hard.
6:07 5’ (before I was awake 3x 1’ without needing to get up)
6:31 still awake, so got up 6:29, altho 7h isn’t enough, dozed

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 22nd (+11d), and before that feeling seizure-prone a few days, maybe from intermittent LDN ❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified: -

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-23 Wednesday

Summary:

• Specific notes today: (6:31 Too wide awake, but only 7h sleep? 6:38 snoozed a bit.) 15:26 less seizure-ish, but still 1-2 situations, like sth. fell of my tray, distraction usually works. Talking about triggers make me trigger-prone, so have to stop talking then. Stools OK. Cold all morning cos of that, so had to warm up a bit indoors. Good reason to go to bed early (edit: wasn’t early enough). 15:30 Problem on balcony is I usually have my indoor shoes (worn out leathery clogs) on, which are comfy and better for my toe, but not warm enough. 18:11 TT 3:1 (VN said 1:3, but I told my wife 3:1), two seizure-spikes, sometimes from TT sometimes from thoughts about things that happen around me. 20:46 shop for 20’ was OK, but shuffled thru, assistants know me, could talk in small bouts.
  3:15 stomach/esophagus „pain“ so drank a bit more almond milk. Traumeel on elbow. 6:46 Calendula for throat. Bit frontal helmet headache, maybe histamine from baked beans and segment of satsuma.
• I think my post postural ache is a bit better atm. so I’m changing () to ().
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew (), not too late bed: photos (). Sleep .
• Biggest issues: Usable energy 16% (), energy profile NOW more ‘slow’ (), TT 3:1 (()). Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): 73.0 kg I think, well better anyway ().
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Tried intermittent dosing, leaving out the 1.5mg on I think Oct 16th, 18th, 20th and 22nd, and guessing the seizure-“attacks” are from that. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems. Better 23rd-
• Last focal seizure: Oct 22nd (+11d) (praps from intermittent dosing of LDN the past 6 days?).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
To be added later and then linked to.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 3:1 (moving/talking/counting 15%) (✅), talking/listening 10' ➔ 80%/4 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 8h36 ✅ ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 8h36 ✅, QCS at 8:00 QCS = very quick very cold shower (22 issues under control).

Sleep 25+3+5=33 1h21+7h48=9h09-33 = 8h36.
22:39-7:48 bed, screen curfew till 7:15 and another 1h+ pics in the evening. 0:28 q6 25’. 3:15 3’ stomach/esophagus „pain“ so drank a bit more almond milk. Traumeel. 6:46 5’ Calendula for throat. Bit frontal helmet headache, maybe histamine from baked beans and segment of satsuma.

2) Watching TRIGGERS, esp. of exhaustibility. Helmety frontal headache 6:00-8:00 maybe from 100g baked beans. Next I'll need 4 tiny fillings (both appts. postponed from beginning Oct cos of continuing flare then to the end), definitely without anaesthetic. Family: Aug 28th/29th-Oct 11th. Tooth cleaning Aug 14/15th: 12 days. Local anaesthesia: Feb 15th-Apr 28th. Talking to 4 docs: May 29th-July 3rd. Histamine foods: 20g goat cheese, avoiding cow (✅). Click for list since Nov 7th 2022..."

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 22nd (+11d), and before that feeling seizure-prone a few days, maybe from intermittent LDN 16th-22nd ❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified: -

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-24 Thursday

Summary:

• Specific notes today: 12:05 1:3, lost first cos I wasn’t coordinated yet, won the 2nd easily, lost 3rd and 4th cos my right elbow had got stiff, not just hurting.
  23:12 bed after 30’ uploading pics, quite a good day all things considered, first curfew 19:15. Tea tree salve on toe. Elbow little bit better. 6 insect bites on left arm. 2:03 had to pin down bird forum thoughts, so wasn’t good to read late, but NSDR helped. Interesting earworms: yesterday a kids’ 5-finger piano practice song, tonight a hymn Von Gott will ich nicht lassen, denn er lässt nicht von mir (translated as From God Shall Naught Divide Me - is that just the tune/chords or is it telling me something?). 8:07 71.8kg not empty, then 73.0 partly empty, LOL. Toe better, maybe salve is better than the oil? Bites annoying, but didn’t hinder sleep, putting oils on them too regularly. Slight frontal headache (baked beans).
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew (), late bed cos of: photos (). Sleep .
• Biggest issues: Usable energy 16% (), energy profile NOW more ‘slow’ (), TT 1:3 (()). Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): 71.8kg not empty, then 73.0kg .
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Tried intermittent dosing, leaving out the 1.5mg on I think Oct 16th, 18th, 20th and 22nd, and guessing the seizure-“attacks” are from that. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-.
• Last focal seizure: Oct 22nd (+11d) (praps from intermittent dosing of LDN the past 6 days?). Better today after taking LDN steady again (and even better on Friday).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
To be added later and then linked to.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 1:3 (moving/talking/counting 15%) (✅), talking/listening 10' ➔ 80%/5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (✅), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 8h11 ✅ ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 8h11 ✅, QCS at 8:00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: h+h-(++=)’ = h-’ = 8h11.
23:12-7:50 48+7h50 = 8h38- 5+10+3+4+5=27, 8h11
0:51 5’
2:03 10’ cos put down forum thoughts
2:50 3’ NSDR just in case - worked.
4:56 4’ Interesting earworms:yesterday a kids piano practice song, tonight a hymn Von Gott will ich nicht lassen, denn er lässt nicht von mir.
6:49 5’ brown pill left
8:07 71.8kg not empty 73.0 partly empty. Toe better. Bites annoying, but didn’t hinder sleep. Slight frontal headache (baked beans).

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 22nd (+11d), and before that feeling seizure-prone a few days, maybe from intermittent LDN 16th-22nd ❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified: -

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-25 Friday: TT OK, but hurting all afternoon after meeting mates for 10’, maybe also cos of forgetting 2nd meal supps, 71.0kg breaking the records…

Summary:

• Specific notes today: 12:49 TT 3:1, won easily lost the last game cos distracted by 10 seagulls flying low over the treetops. 18:02 (no VN): Hurting since I met mates in canteen at 14:50 for 5’, and was invited with wife to a birthday party, pain up to 5-6 and after a friend of ours dropped by, but I wasn’t able to talk with him, just hug hello and goodbye.
  19:44 problem this afternoon may have come from forgetting my 2nd meal supps, having to take everything delayed more to the evening and night. My wife found 2 more spots = 8 on my left arm and suggested some allergy, but we wouldn’t know what to.
  22:35 after 45’ blog, but bed a little earlier. 0:43 tongue problem with 7th/last tooth right bottom, a tooth brush bristle got caught, and now I’m pretty sure that’s cos of a slit under the filling, which my tongue keeps coming up against… 1:40spots next to right elbow playing up. Lying down to the left helped tongue cos it falls to the left side. 4:34 sore throat, tongue a bit, but better, putting akilwinter cream on my hands. 7:41 up, helmety headache, OK-ish are toe, bites/allergy and gut. Only had the closest window open, not all 3. 8:06 71.0kg another all time low. Imbalance sleep breaks towards the morning.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew (), not too late bed cos of: photos (). Sleep .
• Biggest issues: Usable energy 16% (), energy profile NOW more ‘slow’ (), TT 3:1 (()). Music 5’ ➔ pain of 5 , people 10’ 5-6 . Weight after sleep (ideally 78-80kg): 71.0 kg .
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Tried intermittent dosing, leaving out the 1.5mg on I think Oct 16th, 18th, 20th and 22nd, and guessing the seizure-“attacks” are from that. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-.
• Last focal seizure: Oct 22nd (+11d) (praps from intermittent dosing of LDN the past 6 days?).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
To be added later and then linked to.

LDN: 1.5mg ✅ (not 2-3mg, not 0.75mg). Click for effects/dosage (not under 4 Supps)

Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that ‚hangover’ on Oct 20th .) .)
Dosage: (Slowly up from Oct 1st ~0.07mg). Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: TT 3:1 (moving/talking/counting 15%) (✅), talking/listening 10' ➔ 80%/6 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 32 (I think it was) jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (✅), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 8h45, 45' of that deep doze ✅('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 8h45, 45' of that deep doze ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:40-7:41. Sum: 1h20+7h41-(5+4+4+3=)16’ = 9h01-16’ = 8h45, 45’ of that deep doze.
0:43 5’ A3, tongue problem with 7th/last tooth right bottom, a tooth brush bristle got caught, and now I’m pretty sure that’s cos of a slit under the filling, which my tongue keeps coming up against…
1:40 4’ deep. spots next to right elbow playing up. Lying down to the left helped tongue cos it falls to the left side.
4:34 4’ sore throat, tongue a bit, but better, putting akilwinter cream on my hands.
7:06 3’ or get up, dozing 10’ before.
-7:41 deep dozed till now. Helmety headache, OK-ish are toe, bites/allergy and gut. Only had the closest window open, not all 3.
8:06 71.0kg another all time low. Imbalance sleep breaks towards the morning.

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 22nd (+11d), and before that feeling seizure-prone a few days, maybe from intermittent LDN 16th-22nd ❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified: -

Click for development/summaries and see profile...

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

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

[JayCS]

2024-10-26 Saturday: time change: earlier, so I’ll try to keep up getting up at dawn.

Summary:

• Specific notes today: 8:33 Firm stools, so increasing magnesium threonate to 2x(4x0.45)g = 2x1.8g = 3.6g/d 252-288mg has worked. Hope my tongue is going to survive the day.
  16:19 To town to get creatine and back, hardly talking to anyone, just a few words, self-check out, feel injured after an accident, but reconvalescent, so not super-bad
  21:47 OK to do shop in the evening, slouching, shuffling, taking time, got guinea pigs wife and everything earlier but found so many good photos that I don’t know if I’ll get to bed early…
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew (), not too late bed (). Sleep .
• Biggest issues: Usable energy 16% (), energy profile NOW more ‘slow’ (), TT n/a. Music 5’ ➔ pain of 5 , people 10’ 4 . Weight after sleep (ideally 78-80kg): 72.9kg not empty, 72.4 after empty! LOL and 72.3 after showering .
• Latest big trigger: Family flare Aug 29th-Oct 12th (= 6 weeks).
• Last treatment improvements: LDN Jul 18th- 1.5mg for nimbleness . Tried intermittent dosing, leaving out the 1.5mg on I think Oct 16th, 18th, 20th and 22nd, and guessing the seizure-“attacks” are from that. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-.
• Last focal seizure: Oct 22nd (+11d) (praps from intermittent dosing of LDN the past 6 days?).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
To be added later and then linked to.

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%/5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (✅), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 8h19, 20'? of that deep doze (✅) ('PPA‘: 2 ✅). Energy profile: 'slow‘ with '5h rest‘, 4h very slow, 7h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 8h19, 20'? of that deep doze (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:48-6:30 which is actually 7:30 cos of time change. Sum: 1h12+7h30-(4+13+3+3=)23’ = 8h42-23’ = 8h19, 20’? of that deep doze.
= 7:30 bed
0:12 4’
2:16 13’+q5 -2:26 tea tree, calendula
2:36 3’ milk for stomach + NSDR cos dozing, took quite a time. Smell of car fumes.
5:24 3’
-6:30

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

(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Apr 28th) Recovering from the anaesthetic after 10.5 weeks. Unsuccessfully re- trialling DAO (Apr 20th-) for vanilla and raspberry in yogurt (April 16th-24th) and marmite (e.g. 25th): only worked for sinuses, NOT for pee / dryness, sleep and possibly seizures (2 on Apr 22nd).
(May 29th-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(Aug 14&15th) 12 day flare from tooth cleaning Aug 14/15th with long fatigue and short histamine reactions.
(Recent bites were OK-ish, baked beans and even some marmite too.)
(Aug 28th/29th) Flare with some depression from family members. Easing Sep 17th, fairly OK Oct 12th (= 6 weeks).

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) sleep lab psychiatrist not helpful, nor was trying a follow-up per mail. (Jun 10th) appt. with public health officer for retirement too long, so postponed GP & dentist. (Jun 26th) Cardio went well, short, short report adding: fatigue syndrome for more than a year.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD, incl. med effects: OK. Click for latest (Jun 22nd) changes, and details...)

(Jun 22nd) Palpitations down, HR back to 65.
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.

4) UNDER CONTROL ✅ (attention necessary (✅)): Treating elbows tendons by stretching rather than pressing and Traumeel. TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last focal seizure: Oct 22nd (+11d), and before that feeling seizure-prone a few days, maybe from intermittent LDN 16th-22nd ❌. Last esophagus block Sep 25th (able to flush), Aug 7th, Jun 25th, May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

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

1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.

(2) Seizures and esp. esophagus blocks fairly under control - click for details.

Last focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 / 9 / 30 / 34/ 23 / 12 / 4 / 11 Oct 22nd 2024). Stress, histamine & less GABA. Oct 22nd (praps from LDN every 2nd day 16th-22nd?) 11th (wife chiding me) Oct 7th (slight, 12) (double laptops) Sep 24th/25th (23) (forum/disablity application). Sep 1st (+34d) (cos webpage askew) JUL 29th (+30d) JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) Jun 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:

Supps: Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down, 2x1.35g Oct 9th-, 2x1.55g Oct 19th-: gut problems, better 23rd-. Sep 6th 2024: I've been taking ellagic acid again. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: see pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~20h/d .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
Simplified: -

Click for development/summaries and see profile...

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

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