JayCS’s Fibro Blog

[JayCS]

2024-09-17 Tuesday

Summary:

• Specific notes today: 5:46 Chatterbrain, QCS/NSDR didn’t help, so now will try to pull sleep forward by getting up early.
• Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew = none , late bed cos of: photos . 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 . May be easing, 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: Sept 1st (+34d ).

Pic(k)s of the Day

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

Young blackbird

Woodpigeon

This robin likes a firethorn berry too

Blackbird male with moulting head hidden

Snail on artemisia

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 and 4th easily, 2nd and 3rd close, hardly talking (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 6h21, plus 10' 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): 6h21, plus 10' deep doze ❌, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:13-5:46. Sum: h47+5h46-(4+4+4=)12’ = 6h33-12’ = 6h21, plus 10’ deep doze.
0:40 4’ 3:28 4’ 4:50 4’ 5:46 14’ chatterbrain: GP/disabled, so QCS 5:49 overheated imbalanced, 5:59 slight sinus burning, NSDR. 6:08 NSDR. 6:18 too awake, so up, pull forward.

2) Watching TRIGGERS, esp. of exhaustibility. Fatigue flare with a little depression from family members Aug 28th/29th. May be easing Sep 17th. 12 day flare from tooth cleaning Aug 14/15th. Flare from local anaesthesia Feb 15th-Apr 28th and May 29th-July 3rd from talking to 4 docs, next I'll need 4 tiny fillings (aim: Oct), definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). 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. May be easing Sep 17th.

(3) DOCS: Trying for higher disability from Apr 25th on: cardio report (Jun 26th) allergist report (Aug 21st), so now GP. 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 pressing and Traumeel. Magnesium threonate Aug 15th- is definitely deepening sleep, gut problems OK with meals, increasing to 2x0.6g Sep 16th. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 1st (+34d ✅✅). Last esophagus block 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 (Sep 1st 2024). Stress, histamine & less GABA. 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: 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. 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: 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. Magnesium threonate Aug 15th- is definitely deepening sleep, after spreading doses, with meals, better not 3rd meal. 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]

2024-09-18 Wednesday

Summary:

• Specific notes today: 16:29 slight pee tension/pain, and exhaustion after but shows that’s been quite good lately. 18:02 TT 6 games cos 2nd mate was off too long. Able to cos of tired drive, won 1st and 5th game. Shows social flare is easing. 5:02 Bad dream: Speech without being prepared, probably after advice from my wife about retirement farewell.
• Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew = OK-ish + 10’ (), early bed . Sleep ().
• Biggest issues: Usable energy 16% (), energy profile ‘very slow’ , TT 2:4 (). 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: Sept 1st (+34d ).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Robin

Brown marmorated stink bug BMSB, in German simply Marmorated tree bug. I don’t like calling people names.

Buttoned snout

Two-spot ladybird

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 2:4, 6 cos 2nd mate was off too long, but OK, considering (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 6h53, 10' 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): 6h53, 10' of that deep doze (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:15-6:43. Sum: h45+6h43-(4+3+4+4+17+2=)34’ = 7h27-34’ = 6h53, 10’ of that deep doze.
0:35 4’ 0:53 3’ 2:10 4’ 3:41 4’ 5:02 bad dream: Speech without being prepared, probably after advice from my wife about retirement farewell, so QCS. 5:19 NSDR 5:50 Woken up by the following song, from playlist, but continuing. 6:43 up.

2) Watching TRIGGERS, esp. of exhaustibility. Fatigue flare with a little depression from family members Aug 28th/29th. May be easing Sep 17th. 12 day flare from tooth cleaning Aug 14/15th. Flare from local anaesthesia Feb 15th-Apr 28th and May 29th-July 3rd from talking to 4 docs, next I'll need 4 tiny fillings (aim: Oct), definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). 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 weeks.

(3) DOCS: Trying for higher disability from Apr 25th on: cardio report (Jun 26th) allergist report (Aug 21st), so now GP. 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 pressing and Traumeel. Magnesium threonate Aug 15th- is definitely deepening sleep, gut problems OK with meals, increasing to 2x0.6g Sep 16th. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 1st (+34d ✅✅). Last esophagus block 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 (Sep 1st 2024). Stress, histamine & less GABA. 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: 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. 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: 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. Magnesium threonate Aug 15th- is definitely deepening sleep, after spreading doses, with meals, better not 3rd meal. 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]

2024-09-19 Thursday

Summary:

• Specific notes today: 19:30 Meeting kids instead of TT - needed breaks every few minutes, they keep forgetting, so I have to flee. TT 2:4 yesterday praps cos of short sleep.
• Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew: helped by wife being home first, but then needed more later = (), earlier bed (). Sleep (). Again trying to jolt-pull everything forward and trying to take over guinea pig cage from my wife which could help that too.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 0, kids . 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: Sept 1st (+34d ).

Pic(k)s of the Day

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

Wren with robin

Great tit (German: coal tit) drinks out of the wheelbarrow. Not as if I had bird baths etc. everywhere…

Jay

Woodpigeon kung fu again

200 jackdaws, always a moving sight and sound, my mates and wife love this too (my wife used to be superstitious about them until I told her how cute they can be. Except like the other day when two got into a really big fight on the ground.

Woodpigeon from below giving me the eye

Young blackbird with firethorn berry

A jackdaw flying

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

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

1) MAIN ISSUES: TT 0, meeting kids: ❌, 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 7h58, 10' 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): 7h58, 10' of that deep doze (✅), QCS at 7:30 QCS = very quick very cold shower (22 issues under control).

Sleep 22:31-7:15. Sum: 1h29+7h15-(6+5+34=)45’ = 8h43-45’ = 7h58, 10’ of that deep doze.
23:51 6’ 2:16 5’ 3:35 10’ cos couldn’t find Traumeel. 3:44 Q6? -4:07 hungry, almond milk, GABA, 4:09 phone for NSDR 4:35 people outside, so NSDR, 7:15 up, didn’t hear much of the NSDR, pretty deeply.

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. Started Apr 25th on: cardio report (Jun 26th) allergist report (Aug 21st), so next GP. 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 pressing and Traumeel. Magnesium threonate Aug 15th-, then Sep 16th: 2x0.6g. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 1st (+34d ✅✅). Last esophagus block 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 (Sep 1st 2024). Stress, histamine & less GABA. 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: 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. 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: 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. Magnesium threonate Aug 15th- is definitely deepening sleep, after spreading doses, with meals, better not 3rd meal. 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]

2024-09-20 Friday

Summary:

• Specific notes today: 7:32 Garden early.
• Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew = (), bedtime OK despite washing hair late (). Sleep .
• Biggest issues: Usable energy 16% (), 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 (/) - not enough!
• Last focal seizure: Sept 1st (+34d ).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Robin singing next to me in the elderberry

Male blackbird – what’s he doing with his jaw, before he flies down thru the curtains of the spruce tree?

Robin on the root sculpture

Cormorant pair in flight (above the garden)

Marmorated tree bug again, here the light parts seem to blend with the white, yesterday with the yellow background, but actually it’s somewhere in between, isn’t transparent.

Brown red squirrel munching away a walnut, losing and finding it

„Double-headed“ Moorhen(s)

Woodpigeon flying in the evening sun

Hybrid mallard (not a female tufted duck)

Mallard angel

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 5' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving: able to push thru on a cycle walk ➔ 80%/3-4 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 84% ❌, SLEEP 8h09 ✅ ('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): 8h09, all deep ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:45-7:28. Sum: 1h15+7h28-(4+5+25=)34’ = 8h43-34’ = 8h09.
1:10 4’ 2:22 5’ 5:05 3’-- 5:10 q6 -5:28

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 pressing and Traumeel. Magnesium threonate Aug 15th-, then Sep 16th: 2x0.6g. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 1st (+34d ✅✅). Last esophagus block 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 (Sep 1st 2024). Stress, histamine & less GABA. 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: 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. 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: 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. Magnesium threonate Aug 15th- is definitely deepening sleep, after spreading doses, with meals, better not 3rd meal. 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]

2024-09-21 Saturday

Summary:

• Specific notes today: -
• Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew = 20:30+? (), late bed cos of: looking if our new rodent is a rat (), but still: Sleep 8h30 .
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT : (). 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: Sept 1st (+34d ).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Blackbird still severely moulting, but subsinging so beautifully

Blue tit flying to the spruce tree

Spider with wasp as prey for her 3 nests

Common wasp, I can now distinguish them by their face and back.

Robin singing to me on a cherry branch

Young blackbird with a brain screw while bathing

Bird house on the window still near the great woodpeckers hole in the house. There’s actually a second smaller hole to the other side too.

Squirrel’s back of tail

Speckled wood in front of hazel near the ivy where the insects are now usually on its late flowers

The light coloured bits of the legs are lighter than the wall, so it was just coincidence that it had blended on pics in the past few days.

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 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 8h30 ✅ ('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): 8h30 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:22-7:58. Sum: h38+7h58-(++=)6’ = 8h36-‘6 = 8h30, deep.
22:40 looked for rat 23:00 looked up stuff about rat.
2:23 3’ 3:49 3’

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 pressing and Traumeel. Magnesium threonate Aug 15th-, then Sep 16th: 2x0.6g. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 1st (+34d ✅✅). Last esophagus block 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 (Sep 1st 2024). Stress, histamine & less GABA. 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: 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. 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: 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. Magnesium threonate Aug 15th- is definitely deepening sleep, after spreading doses, with meals, better not 3rd meal. 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]

2024-09-22 Sunday

Summary:

• Specific notes today: 8:46 73.9kg.
• Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew = ? (), early bed despite looking for the rodent . Sleep .
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 0:4 (): mostly close, lost mainly cos of elbows and my mate chattering a lot (moving/talking/countingListening 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: Sept 1st (+34d ).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Black-tailed brown red squirrel

Young blackbird flying

Strange white things in my moss decoration on the pavement in front of the house: chrysalises?

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

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

1) MAIN ISSUES: TT 0:4 - mostly close, mainly cos of elbows and my mate chattering a lot (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 8h, +5' 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): 8h00, +5' deep doze ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:30-6:39. Sum: 1h30+6h39-(4+4+=)9’ = 8h09-9’ = 8h00, +5’ deep doze.
0:45 4’ 1:40 4’ 6:39 6’ but had to go downstairs to pee, woke me up, so only dozed a little and then got up.

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 pressing and Traumeel. Magnesium threonate Aug 15th-, then Sep 16th: 2x0.6g. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 1st (+34d ✅✅). Last esophagus block 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 (Sep 1st 2024). Stress, histamine & less GABA. 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: 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. 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: 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. Magnesium threonate Aug 15th- is definitely deepening sleep, after spreading doses, with meals, better not 3rd meal. 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]

2024-09-23 Monday

Summary:

• Specific notes today: 13:48 p2/strain, 15:20 colon burning like from tomatoes: orange choc? passion fruit? (Edit 3rd: Wasn’t passion fruit. So try orange choc now. With only 0.1% orange oil in it.) 18:26 TT good, almost lost 2nd game cos of people close talking. Before tense cos of posing questions on a nature forum.
• Local pain to work on: Treating elbows tendons by stretching instead of pressing and Traumeel. Better, so TT better.
• Habits to work on: Screen curfew OK (), bed OK (). 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 (/) - not enough!
• Last focal seizure: Sept 1st (+34d ).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Robin

Ivy blossoms, now great for the wasps (neighbourhood, but similar in garden)

Rose campion flower, colour now better with camera

Sundown

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 cos elbows better (moving/talking/counting 15%) (✅), talking/listening 5' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving: shop (today in evening) always makes me tense which quickly leads to exhaustion & pain ➔ 80%/3-5 (❌), balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 86% ❌, SLEEP 7h44 ✅ ('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): 7h44 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:30-6:33. Sum: 1h30+6h33-(5+14+=)19’ = 8h03-19’ = 7h44
1:10 5’ 3:00 Imbalance, Colon OK again. 4:22 14’ q5. 6:33 up.

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 pressing and Traumeel. Magnesium threonate Aug 15th-, then Sep 16th: 2x0.6g. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 1st (+34d ✅✅). Last esophagus block 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 (Sep 1st 2024). Stress, histamine & less GABA. 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: 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. 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: 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. Magnesium threonate Aug 15th- is definitely deepening sleep, after spreading doses, with meals, better not 3rd meal. 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]

2024-09-24 Tuesday

Summary:

• Specific notes today: 14:08 felt fine outside, but really hurting inside now, praps it’s the wind outside? 16:50 wife helped me with shop 8’, so I could work at keeping my tension down. 17:26 focal seizure thinking of putting tree creeper pic on forum - so why? (Some kind of social stress?) 19:29 tense from posting even simple stuff, where I’m more confident, on a health forum. 22:37 forum crap almost gave me another focal seizure, but managed to deflect it. 1:11 Imbalance isn’t just from darkness, it’s more or in combination with getting up from something.
• Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew = (), bedtime OK (). Sleep () - up (too) early.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 1:3 (). 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: Sept 1st (+34d ).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Two! male blackbirds, one here flying (and a young one was in that tree too). At last the blackbirds have come out of their summer hiding.

Chaffinch enjoying sweet chestnuts broken up by cars on the street

Collared doves also, having to fly up and down when cars and bikes come by.

Blue tit just hangs on the fat ball and has a good long look at the world from there.

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 - 12:57 TT won 3rd game really clearly, lost the other 3 really clearly (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 7h25, plus 10' 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): 7h25, plus 10' deep doze (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:40-:. Sum: 1h20+6h17-(4+4+4=)12’ = 7h37-12’ = 7h25, plus 10’ deep doze.
22:40 NSDR hardly nec. 23:46 4’ 1:11 4’ nose stuffy, so long-sleeve. Imbalance isn’t just darkness, it’s combination with getting up from something. 2:06 4’ 6:17 + 10’ fdoze

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 pressing and Traumeel. Magnesium threonate Aug 15th-, then Sep 16th: 2x0.6g. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 24th (+23d ✅). Last esophagus block 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 (Sep 24th 2024). Stress, histamine & less GABA. Sep 24th (23) (forum?) 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: 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. 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: 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. Magnesium threonate Aug 15th- is definitely deepening sleep, after spreading doses, with meals, better not 3rd meal. 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]

2024-09-25 Wednesday

Summary:

• Specific notes today: Bad all. day. 10:13 focal seizure tackling the disability application (post vac/covid). Too little sleep too? (GABA?) Paper work made me so tense I had to give up again. 17:58 TT not good, jittery, severe balance problems 15x aeroplane, lost 3 games, won last easily. Talking about the disability form. 20:38 block from quinoa, managed to flush it with gulps of water, which wouldn’t always work. Always need to put some yoghurt on quinoa. Didn’t manage to open a big parcel till the evening (wife wanted to do it for me).
• Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew , early bed . Sleep , after bad day and short last night.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 1:3 (). 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 seizures: Sept 24/25th (2) (+23d ).

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Too windy for wildlife, so hardly any pics without going out of my way.
Not sure if this wasp flying for the ivy blossoms is hanging on a spider’s thread…

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 tough, jittery, imbalanced, see specific notes (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 8h12 ✅ ('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): 8h12 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:10-7:07. Sum: 1h50+7h07-(5+29+4+4+3=)45’ = 8h57-45’ = 8h12.
22:03 Teeth, back, bed. 23:19 5’ cos had to go to loo downstairs, but slowly, imbalance. 0:06 3’ + q6 - 0:32 1:46 4’ 2:37 4’ Traumeel 4:58 3’ 7:07 up.
robin 17:17 10’’

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 pressing and Traumeel. Magnesium threonate Aug 15th-, then Sep 16th: 2x0.6g. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 24th/25th (2) (+23d ✅). Last esophagus block Sep 25th, 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 (Sep 25th 2024). Stress, histamine & less GABA. Sep 24th/25th (2) (+23d) (forum/disability 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 (but could flush it down). 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. 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: 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. Magnesium threonate Aug 15th- is definitely deepening sleep, after spreading doses, with meals, better not 3rd meal. 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]

2024-09-26 Thursday

Summary:

• Specific notes today: 18:14 TT-playing easy, no jitteriness, hardly pain, fine motor skills OK, won 1st and 4th.
• Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew (), bedtime OK (). 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: Sep 24th/25th (2) (+23d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Nothing really to share here today, for once…

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: 18:14 TT 2:2 playing easy, no jitteriness, hardly pain, fine motor skills OK, won 1st and 4th. (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 8h09 ✅ ('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): 8h09 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:40-6:58. Sum: 1h20+6h58-(3+3+3=)9’ = 8h18-9’ = 8h09.
0:28 3’ 3:59 3’ 5:46 3’ interesting ideas during “sleep”.

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 pressing and Traumeel. Magnesium threonate Aug 15th-, then Sep 16th: 2x0.6g. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 24th/25th (2) (+23d). 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 (Sep 24th/25th 2024). Stress, histamine & less GABA. 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. 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: 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. Magnesium threonate Aug 15th- is definitely deepening sleep, after spreading doses, with meals, better not 3rd meal. 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]

2024-09-27 Friday

Summary:

• Specific notes today: 9:12 jitteriness may be from taking much less magnesium, cos of not tolerating the threonate first, so now increasing (like I’d already prematurely written whilst catching up), to first 2x0.7mg (= 110mg elemental magnesium). 15:06 met with friends for 7’ ➔ pain of 4-5 , nauseous (6’ cycle each way).
• Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew OK-ish (), bedtime OK (). Sleep ().
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT : (). 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: Sep 24th/25th (2) (+23d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Cormorants on our small lake nearby, not one, not two, but 3!
(but bit too fuzzy to share the pics with 3 on)

After work’s done, everyone relaxes as they can best…

And one wants to dry up in the trees, to fly they have to “walk on the water”, in this case about 8m.

Relax: Ommmmmm…

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 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 8h, 20' of that NSDR (✅) ('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): 8h, 20' of that NSDR (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:25-6:40. Sum: 1h35+6h40-(++=)’ = 8h15-10’ = 8h, 20’ of that NSDR.
23:57 A3 5’ 2:20 5’ Traumeel on elbows and calves. 2:32-53 too awake, praps cos A3 supps too late, so QCS, then NSDR. 6:25 5’ NSDR

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 pressing and Traumeel. Magnesium threonate Sep 27th up to 2x0.7g. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 24th/25th (2) (+23d). 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 (Sep 24th/25th 2024). Stress, histamine & less GABA. 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. 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: 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. Magnesium threonate Aug 15th- is definitely deepening sleep, after spreading doses, with meals, better not 3rd meal. 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]

2024-09-28 Saturday

Summary:

• Specific notes today: 13:12 lost 3 games close, elbow started stabbing again, won 2nd I think, so 1:3. Taking double mag threonate now = 180mg Mg: watch out for diarrhea. Colon stinging: excluded passion fruit yogurt now. Sleep: 5h sleep stint, longest for years!!
• Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew = (), late bed cos of: bird subsong, wife, photos (). Sleep ().
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 1:3 (). 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: Sep 24th/25th (2) (+23d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Apparently there are two male blackbirds here that don’t mind each other, cos preening themselves close. Both seem juvenile. Means there are at least 4 regulars, just no females.

Two dunnocks looking at each other: in love? (Often polyamorous)

One goes up to the even higher spruce treeptop, but

it’s rather windy the past few days…

too windy…

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 (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 86% ❌, SLEEP 8h23, 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): 8h23, 5' of that deep doze ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:55-7:27. Sum: 1h05+7h28-(5+5=)10’ = 8h33-10’ = 8h23, 5’ of that deep doze.
Late cos of blackbird sub, making bed, sups, wife late. 0:52 5’ apigenin 6:34 5’

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 pressing and Traumeel. Mag threonate: 2x0,9g since today. = 180mg Mg, watch out for diarrhea. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 24th/25th (2) (+23d). 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 (Sep 24th/25th 2024). Stress, histamine & less GABA. 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. 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: 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. Magnesium threonate Aug 15th- is definitely deepening sleep, after spreading doses, with meals, better not 3rd meal. 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]

2024-09-29 Sunday

Summary:

• Specific notes today: 11:15 Soft stools now and 30’ ago could be from taking expired ATP spontaneously, not from threo. Stomach hurt too. 16:14 drove off for birthday which is 25’ cycle-minutes away, but I said I’d only manage 10’ and pushed thru to 15’, but then had to rest cos bad/nausea, nausea, wife cycled on, it took 1.5h to get home, felt trapped not knowing how to do it best. 18:08 still not recovered, but need to walk stairs and cycle 5’ to bring my wife something. Sleep: Web. Decision to add pics later to blog entries. Again a 5h sleep stint!
• Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew = , late bed cos of: web . Sleep .
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 2:2 (). Listening 5-10’ ➔ pain of 4-5 .
• Latest big trigger: 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: Sep 24th/25th (2) (+23d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Woodpigeon

Comma

Fungus

Canker

IMG_72370 Baum Geschwulst 5 Gart-Wäldchen sm bv v2|690x460

Grey heron

Jackdaws - our flock of 200+ doing their beautiful cheering evening round, whilst there’s still a slight bit of light…
… after which the robins sing their bedtime song, sometimes short, sometimes, long and the blackbirds scold themselves to bed.

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 13:04 2:2 lost first 2, hearing bird calls in 3rd made me try to win quick and try to ‚catch‘ the birds. (moving/talking/counting 15%) (✅), talking/listening 5' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving: Slow cycling time limit was 10’ as thought, pushing thru ➔ 70%/5-6 ❌, balance (✅), body fog (✅), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 86% ❌, SLEEP 7h59 ✅ ('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): 7h59, 5' of that deep doze ✅, QCS at 5:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:25-8:00. Sum: h35+8h-(4+22+=)26’ = 8h25-26’ = 7h59, 5’ of that deep doze.
Sleep: cos of a site where some important info was to expire today, so wanted to copy it. 4:46 4’ 5h stint, longest ever. 4:56 QCS 5:04 clothes 5:08 bed with phone for NSDR. 6:19 3’ tape.

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 (✅)): Mag threonate: Sep 28th- 2x0,9g, no diarrhea. Treating elbows tendons by pressing and Traumeel. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 24th/25th (2) (+23d). 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 (Sep 24th/25th 2024). Stress, histamine & less GABA. 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. 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. 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]

2024-09-30 Monday

Summary:

• Specific notes today: -
• Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew = (), late bed cos of: ? (). Sleep ().
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 2:1 (). Listening 5-10’ ➔ pain of 4-5 .
• Latest big trigger: 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: Sep 24th/25th (2) (+23d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Woodpigeon all cuddly directly above me

Pair of older female meadowhawks sitting on a park bench - why not?

Sydney Opera House

aka White Swan

Female tufted duck

Female northern goshawk

Speckled wood

Blue hawker

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%/4-5 ❌, 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 7h35 (✅) ('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): 7h35 (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:57-7:18-:. Sum: 1h03+7h18-(4+4+30?+4+4=)46’ = 8h21-46’ = 7h35.
2:51 4’ severe sore throat and cold, som calendula and closing closest window. 0:39 4’ 1:03 q6 2:51 4’ severe sore throat and cold, som calendula and closing closest window. 5:50 4’ frontal headache

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 (✅)): Mag threonate: Sep 28th- 2x0,9g, no diarrhea. Treating elbows tendons by pressing and Traumeel. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 24th/25th (2) (+23d). 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 (Sep 24th/25th 2024). Stress, histamine & less GABA. 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. 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. 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]

2024-10-01 Tuesday: TENS made me seizure-ish even at low dose as I expected, and didn’t help my likely inflamed elbow tendons

Summary:

• Specific notes today: 9:23 curious I asked for and tried neighbour’s TENS on 15 for 4’ on my right elbow, so I could feel it, but sets my seizure-ishness off. She takes it up to 30. 10:36 cos right elbow seemed to feel better when carrying things I tried again for 4’ on my left elbow, on 10 for 2’, then 8 for 2’. Nauseous. 10:40 now dizzy, numb in head, not quite seizure-ish. 6:43 Since doubling mag threo my jitteriness has decreased, when things fall it’s no longer such a jolt. The TENS at a dose I can’t tolerate doesn’t help something like my elbow tendons, which are I think inflamed anyway, so don’t think it’s appropriate.
• Local pain to work on: Treating elbows tendons by pressing 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: Sep 24th/25th (2) (+23d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Blue tit standing sideways on bricks: what a circus artist!

Two great tits flying

Blue tit landing

Great tit flying

Blue tit on roof

Jay seems to be laughing like a kookaburra

Beautifully shiny black pill-bug

House sparrow right up top, very unusual here:

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 in the rain 2:2 cos of the side I was on, probably partly cos of puddles on one side, going upstairs after made me nauseous (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 h, 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 22:55-:. Sum: h+h-(++=)’ = h-’ = h, +5’ deep doze.
Curfew OK till 22:00, then bird forum.
2:08 4’ 2:59 4’ 4:37 4’ 6:07 3’ deep doze -6:40

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 (✅)): TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Treating elbows tendons by pressing and Traumeel. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 24th/25th (2) (+23d). 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 (Sep 24th/25th 2024). Stress, histamine & less GABA. 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. 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. 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]

2024-10-02 Wednesday

Summary:

• Specific notes today: TT 2:2, won easily on better side, lost 1st & 3rd close. Then upset cos we saw a pair of jackdaws in fight during TT. Cortisol flash gave me the verve to work on my mail inbox. But got to watch out, cos colleague is coming tomorrow to “see me off”, so I need to sleep well. 5:32 switching to a 2nd duvet helped sore throat. Bit sinusey.* Local pain to work on: Treating elbows tendons by pressing and Traumeel.
• Habits to work on: Screen curfew = (), bedtime OK (). 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: Sep 24th/25th (2) (+23d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Jackdaw after fight with another, who’d’ve thought, eye maybe damaged, needs to recover:

Seeking refuge with a woodpigeon, but not admitting it:

![IMG_73779 sn2 bv vf v2|690x313](upload://gbRSS7TT2goGFe0hDA3Hp2Q2s2V.jpeg

Left leg pulled up:

Light coloured leopard slug again

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

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

1) MAIN ISSUES: TT : (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 7h30 (✅) ('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): 7h30 (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:37-7:19. Sum: h23+7h19-(4+4+4=)12’ = 7h42-12’ = 7h30, 0’ of that deep doze.
1:11 4’ sore throat, so calendula 2:53 4’ (party people cos national holiday tomorrow) 2nd warm duvet 5:32 4’ switching to a 2nd duvet helped, so no more calendula nec. Bit sinusey. realised I often leave 1 heating on despite opening windows, which is silly, but also makes me wonder why I got the sore throat - praps not from the air, but the heating? But the warmer duvet?

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 (✅)): TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Treating elbows tendons by pressing and Traumeel. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 24th/25th (2) (+23d). 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 (Sep 24th/25th 2024). Stress, histamine & less GABA. 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. 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]

2024-10-03 Thursday: Retirement visit and small exhausting catastrophes

Summary:

• Specific notes today: 12:51 20-25’: Colleague came round to “retire” me in my garden with a tripod and voucher as presents and single or group notes from most of the colleagues. Nice, moving, shaky first, but could calm down a bit in between, so managed quite long, had to cry at the end when I said colleagues are welcome to come round for 5’ spontaneously. And after 15’ break very slow cycle-walk, good pics, pain after of seemingly only 4. 13:45 pain from emotions 4-5, but do have a little energy, probably cortisol drive. 14:28 jittery when dropping a yoghurt. 16:02 pee every 20’, cos cold feet, need to switch to warmer shoes & socks (was still 5 pairs, but outside ones have been a bit thinner). 18:28 struggle to semi-survive several “catastrophes”, 1.75h to the lake, couldn’t find a certain good place for guinea pigs’ grass (an empty house), so chose a place we’d been an hour before, then the small shears I had with me were smashed after I’d lost them from my bike the other day and they’d obviously been run over. So I had to cut grass with hands, which exhausted me even more. A rabbit hole (or rather: hamster wheel) of increasing exhaustion. [Edit later: Ironically, the place I was looking for was only 50m away from the place I then got the grass from. Irony 2: the place I got it from was actually better for grass than the place I was looking for. But that other place had 2 good guinea pig herbs, like dandelion.] A warning once again to keep things easier and doing demanding things when I’m feeling OK. 20:29 73.8kg.
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew = ? (), OK-ish bed cos of: wife, photos, pigs (). Sleep ().
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT n/a. 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: Sep 24th/25th (2) (+23d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Woodpigeons

Brown red squirrel climbing around and then sunbathing for an hour

Maple seed standing up straight!

Centipede, not sure which, but sure looks good

Buzzard

Orangie

Tiny snail

Tachina fera, German: hedgehog fly

Firebug

Another tiny snail

Female tufted duck

Hybrid/crossbreed mallard

Mallard group

Hybrid mallard

Young moorhen

Collared dove

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 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 7h56, 50'? 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): 7h56, 50'? of that deep doze (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:45-6:58. Sum: 1h15+6h58-(4+5+5+3=)17’ = 8h13-17’ = 7h56, 50’? of that deep doze.
0:34 4’ opened windows after wife had been with me who doesn’t like windows open, and turned one heating off, and then my nostrils opened. Praps only deep dozing 50’. Noisy person outside. 1:24 5’ Traumeel. Warning horn outside. 2:49 5’ people, so plugs now. 4:17 3’ dreaming of selecting pics. -6:58. Right elbow started stinging at night. Forgot stretches.

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 (✅)): TENS: Harms, no help. Mag threonate: Sep 28th- 2x0,9g, no diarrhea, jitteriness down. Treating elbows tendons by stretching and Traumeel. Run of out lumbrokinase, been taking ellagic acid, but not B2, B3, Betain HCl. Last seizure Sep 24th/25th (2) (+23d). 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 (Sep 24th/25th 2024). Stress, histamine & less GABA. 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. Local pain to work on: 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]

2024-10-04 Friday: Severe jitters cos of disability application stuff

Summary:

• Specific notes today: 10:54 Wife came to GP’s office with me, had the jitters so severely, that she told me to stay outside. I’d forgotten one of the reports I meant to give them, too, for the disability application. [Edit on 8th: Just found it after unsuccessfully looking upstairs, returning to where it was sposed to be, and there it was, just tidy in an envelope… So that’s my task for the day done.] 20:35 My wife is at a loss and asks me for explanations. Hard to say. But she believed it to be mental, it’s just things that “cross my path” severely exhaust me, like things falling, decisions, talking etc, it’s physical. On the one hand the disability application is a hell of a strain for me, and I’m unsure and last time increasing disability from 50 to 70 was turned down. This time my exhaustion will surely let it get waved thru, maybe even up to 100. But it’s only a bit of a tax advantage, not sure if it’s the effort. And in this case it was simply that the GP and office expected to send their report for disability to the disability office (which is usual), but that says it’s easier for them if it’s sent to me and I put it in together with the form. This was no problem when I asked the cardio or the allergist for their reports, why is their expectancy now a problem? Maybe all this effort for it, the flares from the previous doc talks, is summing up. In the evening TT 2:0: moving 20% talking 40% counting 30%), then talking/listening - talked 2x5’ with passersby cos of the peregrine I was photographing, then 2 people I’d been wanting to talk to for quite a time, pushing thru with cortisol ➔ 80%/4-6 .
• Local pain to work on: Treating elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew = OK-ish (), late bed cos of: mainly wife, but also photos, pigs (). 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: Sep 24th/25th (2) (+23d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Young Blackbird splashing and preening himself

Dad flying from the tree top

Black-Brown Squirrel with Biiiig Apple: all mine!

Our magpie couple at last close together:
So that’s where the treasure is?

Over there?

Ah, that’s just a made up story about magpies treasure hunting

Two cute woodpigeons

The one on the left

The one on the right

Male peregrine on his tower

Bat, I think pipistrel, a bit sharper now, at least a „Batman“-sign’s visible

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 20% talking 40% counting 30%) (✅), talking/listening - talked 2x5' with passersby cos of the peregrine I was photographing, then 2 people I'd been wanting to talk to for quite a time, pushing thru with cortisol ➔ 80%/4-6 ❌, 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 8h19, 50' 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): 8h19, 50' of that deep doze ✅, QCS none today. QCS = very quick very cold shower (22 issues under control).

Sleep 23:10-7:43. Sum: h50+7h43-(4+3+3+4=)14’ = 8h33-14’ = 8h19, 50’ of that deep doze.
0:30 4’ 1:54 3’ deep 5:16 3’ plugs cos of party people. Sinus burning, don’t think it was marmite tho. 6:47 4’ robin song. -7:43 only deep dozing.

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 Sep 24th/25th (2) (+23d). 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 (Sep 24th/25th 2024). Stress, histamine & less GABA. 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]

2024-10-05 Saturday: down to 71.7kg. Increase mag threo possible. Long sleep after loads of noisy passersby.

Summary:

• Specific notes today: 8:15 71.7kg, after loo: that’s worryingly less, considering we’ve been cooking a bit more, so eating’s a bit easier. 8:33 slight constipation means I can now increase the mag threo even more, so trying 2x1g now (160mg).
• 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 9h03 (up late cos of noisy passersby) .
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT n/a (). 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: Sep 24th/25th (2) (+23d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Great woodpecker hammering a hole in a house, what a din it made, and more to come…

If this is a Western honey bee it seems too round to me

Great tit with a very slick black hairdo after moulting

Blue tit in a high class bathing establishment

And this is the great woodpecker’s hole 2 hours later, twice as big… more to come…

In German a „rabbit dung beetle“ (= rabbit dumble dor - now that’s where his name comes from…)

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 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 9h03, 10' 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): 9h03, 10' of that deep doze ✅, QCS at 3:50 QCS = very quick very cold shower (22 issues under control).

Sleep 22:40-8:21. Sum: 1h20+8h21-(6+3+3+23+3=)38’ = 9h41-38’ = 9h03, 10’ of that deep doze.
0:01 6’ 1:25 3’, noisy passersby. 3:16 3’ dreaming of great woodpecker with peregrine. 3:47-4:10 23’ 5th or 6th time passersby, chatterbrain, mails, so QCS. Imbalance. Best NSDR. 6:56 3’ tape. 8:21 up, after 10’ dozing.

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 Sep 24th/25th (2) (+23d). 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 (Sep 24th/25th 2024). Stress, histamine & less GABA. 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]

2024-10-06 Sunday - TT shows I need to postpone dentist again

Summary:

• Specific notes today: 13:25 TT 1:3, won last, pain 5, exhaustion high, feel bad, confirming to postpone dentist again.
• 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 1:3 (). 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: Sep 24th/25th (2) (+23d)()

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Grey geese, praps with some white-fronted ones

Made it!

(Brown marmorated stink bug again)

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

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

1) MAIN ISSUES: 13:25 TT 1:3, won last, pain 5, exhaustion high (moving/talking/counting 15%) ❌, talking/listening 5' ➔ 80%/4-6 ❌, music 5' ➔ 80%/5 ❌, white lips 70-90% ❌, moving ➔ 80%/4-6 ❌, balance (✅), body fog (✅), no 16 jackknives (❌), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (✅), nimble (✅), tense/jittery (✅/❌), EXHAUSTIBILITY 86% ❌, SLEEP 7h37, 10' of that 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): 7h37, 10' of that doze (✅), QCS at 4:45 QCS = very quick very cold shower (22 issues under control).

Sleep 23:20-7:33. Sum: h40+7h33-(3+4+4+15=)26’ = 1h13-26’ = 7h37, 10’ of that doze.
q6. 0:53 3’ 2:9 4’ 4:31 4’ 4:43 qcs cos tax delay worrying. 4:54 clothes on. 4:58 bed. NSDR. 7:33 up.

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 Sep 24th/25th (2) (+23d). 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 (Sep 24th/25th 2024). Stress, histamine & less GABA. 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”