JayCS’s Fibro Blog

[JayCS]

2024-12-04 Wednesday

Summary:

• Specific notes today: 11:03 Creaming myself before stools worked this morning, hope that continues (edit: hardly, pity), 17:27 talked with neighbour 10’ OK, pain of 3 rather than 4, just stopped talking myself and didn’t nod too much. 22:55 had to push thru to get quite a few things done this evening. Screen curfew early. Another 5-10’ later. 5:37 elbow & imbalance. Headache so drank more. 7:26 seems morst elbow tendons recovered, esp. left, on right 1 tendon that goes upwards and outwards causing the most problems, freezing in at night, causing pain.
• Local pain to work on: Elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew / late-ish bed (). Sleep ().
• Biggest issues: Usable energy 11% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Glutathione liposomal Dec24. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. Constipation (me!?) Dec: from switching glutathione to liposomal or from increasing threonate to 2x3g? LDN Jul 18th- 1.5mg for nimbleness .
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Squirrel climbing the house facade again, this time much faster, so I couldn’t focus well.

The comma hibernating upside down still there…

Blurred cute mouse, rat and spider:
Yellow-necked field mouse unsuccessfully trying for the higher fatball again.
Great-tit immediately finds and feeds from it (robin didn’t find it immediately). And a brown Norway rat (cute as ever) at the feeding bowl again in the morning shows why I’ve hung the fatball higher and means I’ll be reducing the feeding bowl a while. A lovely shiny spider.

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

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

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16? jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 89% ❌, SLEEP 8h05 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 8h rest, 6h very slow, 2h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 8h05 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:00-7:13. Sum: 1h+7h13-(4+4+=)8’ = 8h13-8’ = 8h05.
23:00- 1:32 4’ apigenin, deeply, closed 1 window. 5:37 4’ elbow imbalance. 2 windows open. Headache so drank more. Phone in case I need NSDR. -7:13. Sweating from having all windows closed by mistake. Open with plugs in - slept beautifully. 7:26 seems morst elbow tendons recovered, esp. left, on right 1 tendon that goes upwards and outwards causing the most problems, freezing in at night, causing pain.

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

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

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) new sleep lab psychiatrist not helpful any more. (Jun 10th) appt. with public health officer for retirement too long. (Jun 26th) Cardio helped.
GP (Apr 25th): Update (cancer and bp OK), will help with disability.
CARDIO: Checks every 2 months, good as I can’t take the CVD meds.
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD: Sorta OK considering no meds tolerated. Click for latest (Jun 22nd) changes, and details...)

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

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

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal Dec 2024.
Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

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

Supps: Nattokinase again Jan 10th- 2025. Mag threonate: Sep 28th- 2x0,9g, to 2x1.35g to 2x1.55g to 3x3g: gut problems. Ellagic acid again Sep 6th-. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th 2023: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th- 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 85% (outdoors more again)

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

Click for development/summaries and see profile...

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

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

[JayCS]

2024-12-05 Thursday

Summary:

• Specific notes today: 9:44 shaving 20’ really knackered me. 10:26 after cardio call about appts, not well at all. 12:43 5’ in shop 5’ there, ok considering family coming at 13:30. 22:44 Thinking the insect bites may have been from the flies in the great tit nest, which I thought didn’t have any, been sitting 1.5m from it, altho lid shut. Semi-survived meeting with family members 2-3h, I was with them 3x15-20’. Worse was preparing the flat and shaving. But not as bad as family meeting in August. At night: elbow, no bites, toes OK.
• Local pain to work on: Elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew / late-ish bed (). Sleep ().
• Biggest issues: Usable energy 11% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Glutathione liposomal Dec24. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. Constipation (me!?) Dec: from switching glutathione to liposomal or from increasing threonate to 2x3g? LDN Jul 18th- 1.5mg for nimbleness .
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Robin singing subsong on the old candlestand in the firethorn,
the hibernating comma once again
the “ashes” of the fungi growing in this unlikely spot next to the garden gate.

an

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

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

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16? jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 89% ❌, SLEEP 7h25 (✅) ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 8h rest, 6h very slow, 2h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 7h25 (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:05-6:42 Sum: h55+6h42-(4+4+4=)12’ = 7h37-12’ = 7h25.
23:05 0:11 4’ sore throat so closed 1 w., bit sweaty again. 4:56 4’ elbow. No bites. Toes ok too. 5:20 no bites, but itchy right nipple, so put oils on it. -6:42 very awake

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

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

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) new sleep lab psychiatrist not helpful any more. (Jun 10th) appt. with public health officer for retirement too long. (Jun 26th) Cardio helped.
GP (Apr 25th): Update (cancer and bp OK), will help with disability.
CARDIO: Checks every 2 months, good as I can’t take the CVD meds.
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD: Sorta OK considering no meds tolerated. Click for latest (Jun 22nd) changes, and details...)

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

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

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal Dec 2024.
Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

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

Supps: Nattokinase again Jan 10th- 2025. Mag threonate: Sep 28th- 2x0,9g, to 2x1.35g to 2x1.55g to 3x3g: gut problems. Ellagic acid again Sep 6th-. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th 2023: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th- 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 85% (outdoors more again)

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

Click for development/summaries and see profile...

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

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

[JayCS]

2024-12-06 Friday

Summary:

• Specific notes today: 2:51 Big toes hurting - again chilblains cos I’ve been careless, don’t feel the cold, got to be really careful now, lanolin cream. 3:08 imbalance, up cos chilblains worrying me vs. vasculitis, heart thumping, so NSDR. 5:37 dreamt I was taken to hospital cos of a lymphoma or something cos of the possible vasculitis. Research vasculitis a bit. Traumeel on elbow. 6:38 imbalance, only 3x0.3 GABA - change to that, cos seems better. Only showering every 1.5-2 days, alternate warm-cold. NSDR to get to 8. 7:12 up, cos didn’t work.
• Local pain to work on: Elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew / late bed . Sleep ().
• Biggest issues: Usable energy 11% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Glutathione liposomal Dec24. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. Constipation (me!?) Dec: from switching glutathione to liposomal or from increasing threonate to 2x3g? LDN Jul 18th- 1.5mg for nimbleness .
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Just loads of blackbird subsong, but no pics.

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

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

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16? jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 89% ❌, SLEEP 7h09 (✅) ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 8h rest, 6h very slow, 2h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 7h09 (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:42-6:. Sum: h18+7h12-(3+4+4+5+5=)21’ = 7h30-21’ = 7h09.
23:42-
0:55 3’ closed 2w.
2:51 4’ plugs. Big toes hurting - again chilblains cos I’ve been careless, don’t feel the cold, got to be really careful now, lanolin cream.
3:08 imbalance, up cos chilblains worrying me vs. vasculitis, heart thumping, so NSDR.
5:37 5’ dreamt taken to hospital cos of a lymphoma or something cos of the possible vasculitis. 2w open. Research vasculitis a bit. Traumeel elbow.
6:38 5’ cloud 2nd w, imbalance, only 3x0.3 GABA - change cos seems better. Only showering every 1.5-2 days, alternate warm-cold. NSDR to get to 8.
7:12 not sleeping, not tired so up after deep dozing using NSDR.

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

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

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) new sleep lab psychiatrist not helpful any more. (Jun 10th) appt. with public health officer for retirement too long. (Jun 26th) Cardio helped.
GP (Apr 25th): Update (cancer and bp OK), will help with disability.
CARDIO: Checks every 2 months, good as I can’t take the CVD meds.
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD: Sorta OK considering no meds tolerated. Click for latest (Jun 22nd) changes, and details...)

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

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

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal Dec 2024.
Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

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

Supps: Nattokinase again Jan 10th- 2025. Mag threonate: Sep 28th- 2x0,9g, to 2x1.35g to 2x1.55g to 3x3g: gut problems. Ellagic acid again Sep 6th-. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th 2023: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th- 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 85% (outdoors more again)

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

Click for development/summaries and see profile...

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

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

[JayCS]

2024-12-07 Saturday

Summary:

• Specific notes today: 18:24 shop 10’, really shattered me, difficult. Early screen curfew, but another 30’ before bed. lanolin on big 2nd toes + big toes. Bepanthen on finger injury. 1:37 Traumeel on elbow. 7:46 too occupied with Todos like posting & disability. That happens often lately from 5 or usually 6 on.
• Local pain to work on: Elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew () / late bed (). Sleep .
• Biggest issues: Usable energy 11% , energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Glutathione liposomal Dec24. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. Constipation (me!?) Dec: from switching glutathione to liposomal or from increasing threonate to 2x3g? LDN Jul 18th- 1.5mg for nimbleness .
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Apart from blackbird subsinging tons again, despite rain, then even shortly before and in the dusk again, I believe cos the sun came out a bit before.
Pics: Only the comma again… but what a sight.
If you haven’t got it yet (someone didn’t first time) this is not a leaf.
It’s a butterfly, called ‘comma’. Named after the white “c” on the back wings. Which are the top ones, cos it’s sitting head down from day 2 on (Dec 2nd)! (Hibernating for 3 weeks, then probably pinched by a bird, but I sure hope not, they’re not very common 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 not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16? jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 89% ❌, SLEEP 8h24 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 8h rest, 6h very slow, 2h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 8h24 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:14-7:46. Sum: h46+7h46-(4+4+=)8’ = 8h32-8’ = 8h24.

• 23:14-
  1:37 4’ closed 1w. Traumeel on elbow.
  5:46 4’ elbow closed 2nd w
  -7:46 too occupied with Todo like posting, disability. That happens often lately from 5 or usually 6 on.

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

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

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) new sleep lab psychiatrist not helpful any more. (Jun 10th) appt. with public health officer for retirement too long. (Jun 26th) Cardio helped.
GP (Apr 25th): Update (cancer and bp OK), will help with disability.
CARDIO: Checks every 2 months, good as I can’t take the CVD meds.
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD: Sorta OK considering no meds tolerated. Click for latest (Jun 22nd) changes, and details...)

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

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

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal Dec 2024.
Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

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

Supps: Nattokinase again Jan 10th- 2025. Mag threonate: Sep 28th- 2x0,9g, to 2x1.35g to 2x1.55g to 3x3g: gut problems. Ellagic acid again Sep 6th-. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th 2023: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th- 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 85% (outdoors more again)

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

Click for development/summaries and see profile...

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

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

[JayCS]

2024-12-08 Sunday

Summary:

• Specific notes today: 13:12 Surprisingly OK after out for almost 1h to the lake, pain 4-5, but can carrying on pushing thru, so energy may be 14%. 22:35- woah, would you believe I’ve managed to go to bed early despite blocked bathroom - just in case I need to bring any rats away early. 6:36 woken by robin 2’ ago!
• Local pain to work on: Elbows tendons by stretching and Traumeel.
• Habits to work on: Screen curfew / late-ish bed (). Sleep ().
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Glutathione liposomal Dec24. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. Constipation (me!?) Dec: from switching glutathione to liposomal or from increasing threonate to 2x3g? LDN Jul 18th- 1.5mg for nimbleness .
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Robin has found the meatball I put up higher so the rodents don’t get it. (Wildlife camera)

Caught a black squirrel first time with camera.

Pair of tufted ducks, one or both may be juvenile, not sure

How different a blackbird looks if the beak isn’t as bright yellow as those mine have

Great tit looks into a branch hole like a woodpecker

Carrion crow walking proud and blinking its third eyelid

‘Miscoloured’ mallard drake or my dictionary says “drake mallard”.
Would that be “of colour”?

The two tufted ducks again on our way back, with a black-headed gull

Tiny brown snail

f

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

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

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16? jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 86% (❌), SLEEP 7h51 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 8h rest, 6h very slow, 2h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 7h51 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:35-6:34. Sum: 1h25+6h34-(4+4+=)8’ = 7h59-8’ = 7h51.
22:35- woah, would you believe I’ve managed to go to bed early despite blocked bathroom just in case I need to bring any rats away early.
1:21 4’ 4:20 4’ elbow exercises, closed 2nd window, managing to distract, and will close the door now. 6:36 woken by robin 2’ ago!

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

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

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) new sleep lab psychiatrist not helpful any more. (Jun 10th) appt. with public health officer for retirement too long. (Jun 26th) Cardio helped.
GP (Apr 25th): Update (cancer and bp OK), will help with disability.
CARDIO: Checks every 2 months, good as I can’t take the CVD meds.
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD: Sorta OK considering no meds tolerated. Click for latest (Jun 22nd) changes, and details...)

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

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

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal Dec 2024.
Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

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

Supps: Nattokinase again Jan 10th- 2025. Mag threonate: Sep 28th- 2x0,9g, to 2x1.35g to 2x1.55g to 3x3g: gut problems. Ellagic acid again Sep 6th-. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th 2023: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th- 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 88% (outdoors more again, today even at our lake, 1h cycle-walk)

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

Click for development/summaries and see profile...

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

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

[JayCS]

2024-12-09 Monday

Summary:

• Specific notes today: Beau lines split my thumb nail 3-4mm at the base on my left thumb worse than right, so caused cos of not drying properly and more contact with water whilst right hand has been injured.
• Local issues to work on: Elbows tendons by stretching and Traumeel. Beau lines on left thumbnail by minimising water contact.
• Habits to work on: Screen curfew / late-ish bed (). Sleep ().
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Glutathione liposomal Dec24. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. Constipation (me!?) Dec: from switching glutathione to liposomal or from increasing threonate to 2x3g? LDN Jul 18th- 1.5mg for nimbleness .
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…
White breasted stone marten still coming round at night

Robin subsinging again - watch the changing throat marking

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

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

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 22 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 86% (❌), SLEEP 8h02 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 8h rest, 6h very slow, 2h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 8h02 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:45-6:59. Sum: 1h15+6h59-(4+4+4=)12’ = 8h14-12’ = 8h02.
22:40 no rats at 9, haven’t looked again, washed hair, back.
22:45-0:08 no elbow, 22 jackknives, Beau lines split my left thumb nail 3-4mm, so trying to stop contact with water and dry quick and properly, 3:51 4’ hot and sweaty made me check heating and windows, 2 were closed, so opened 1 again, 4:14 Strong forum thoughts, so NSDR 10’ ear plugs -6:59

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

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

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) new sleep lab psychiatrist not helpful any more. (Jun 10th) appt. with public health officer for retirement too long. (Jun 26th) Cardio helped.
GP (Apr 25th): Update (cancer and bp OK), will help with disability.
CARDIO: Checks every 2 months, good as I can’t take the CVD meds.
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD: Sorta OK considering no meds tolerated. Click for latest (Jun 22nd) changes, and details...)

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

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

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal Dec 2024.
Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

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

Supps: Nattokinase again Jan 10th- 2025. Mag threonate: Sep 28th- 2x0,9g, to 2x1.35g to 2x1.55g to 3x3g: gut problems. Ellagic acid again Sep 6th-. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th 2023: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th- 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 88% (outdoors more again)

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

Click for development/summaries and see profile...

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

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

[ModSupport]

Hey @JayCS,
How are you going? Things here have been going backwards and to get services I’ve needed to find documentation from the archives in my computer (somewhere) and although I didn’t get my camera out, I did find some images and thought of you. So here are a few
(P.S. I still haven’t located said documentation yet, so I’m sure, in my hunting I’ll find some others )

A couple of pink Galahs

A Rosella on a tomato stake

A local hawk checking around before having a dip

A dusty wizard after a firestorm blew through

A Monarch butterfly

Merl from the Modsupport Team

[JayCS]

Hey Merl, wow - that’s really cool, such great pics, such great creatures!
Hope you find your stuff soon, always nerve-wracking such “paper”-work.
When it happens (like tax up next, I tidy up at the same time, which I quite like doing, if I have to… Luckily last time was only 2-3 months ago and I’ve been fairly tidy since then, meaning I name things properly, soi just need to re-allocate everything in my download-file).

Galahs would be the sort of bird we keep as pets. Thankfully Australia forbad export/import, how dreadful to pinch and transport them. Very noisy I read!

You know from my postings how I like pics of birds in various positions, and your hawk ones are no exception.

The wizard’s greyed fittingly… and survived!

What beautiful colours the butterfly has.
Looking up several types of monarch and following the lead of my laptop this instead seems a lacewing - and it has the laces on the wings for that. But I can only find it on alamy, which isn’t exactly reputable, not on wp. But some Australian sort of “red lacewing”?

Beautiful Red Lacewing Butterfly on a leaf in north Queensland, Australia...

What d’you think?

Thanks, very much looking to more of your beauties!

[JayCS]

2024-12-10 Tuesday

Summary:

• Specific notes today: Elbow partly better 3:49 bellyache. Elbow I twist before I get up. Lanolin on 2nd right toe, Traumeel on elbow. 5:52 elbow hurting again, plugs.
• Local issues to work on: Elbows tendons by stretching and Traumeel. Beau lines on left thumbnail by minimising water contact.
• Habits to work on: Screen curfew / late-ish bed (). Sleep .
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT not possible . Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Glutathione liposomal Dec24. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. Constipation (me!?) Dec: from switching glutathione to liposomal or from increasing threonate to 2x3g? LDN Jul 18th- 1.5mg for nimbleness .
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

White-breasted stone marten just discovered something interesting in the garden and softly jumps down the steps to find it…

The remains of mushrooms on the tree stump and a few small ones (30? of 300?) around it, plus again the comma butterfly hibernating/wintering.

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

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

1) MAIN ISSUES: TT not possible ❌, talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16? jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 86% (❌), SLEEP 8h18 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'rest/very slow' with 8h rest, 6h very slow, 2h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 8h18 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:10-7:40. Sum: h50+7h40-(4+4+4=)12’ = 8h30-12’ = 8h18.
23:10- 1:32 4’ deep, elbow better 3:49 4’ bellyache, elbow I twist before I get up. Lanolin on 2nd right toe, Traumeel on elbow. 5:52 4’ screen curfew, but q6 b4 bed, elbow hurting again, plugs. -7:40 + dozing 5’

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

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

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) new sleep lab psychiatrist not helpful any more. (Jun 10th) appt. with public health officer for retirement too long. (Jun 26th) Cardio helped.
GP (Apr 25th): Update (cancer and bp OK), will help with disability.
CARDIO: Checks every 2 months, good as I can’t take the CVD meds.
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD: Sorta OK considering no meds tolerated. Click for latest (Jun 22nd) changes, and details...)

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

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

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal Dec 2024.
Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

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

Supps: Nattokinase again Jan 10th- 2025. Mag threonate: Sep 28th- 2x0,9g, to 2x1.35g to 2x1.55g to 3x3g: gut problems. Ellagic acid again Sep 6th-. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th 2023: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th- 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 88% (outdoors more again)

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

Click for development/summaries and see profile...

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

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

[ModSupport]

Hey JayCS,
I’m in South Australia and I ordered those butterflies from Queensland for my Neice and her Grandmother to release. The niece was butterfly mad when she was younger, they were sold as monarch’s. The export of many creatures (even interstate) is fairly heavily regulated here now. Many, many years ago in Queensland they decided to grow sugarcane and it was being attacked by a beetle, so they introduced a type of toad from South America, known here as a cane toad.

Problem was those cane toads have no natural predators here and they produce a poison that kill anything that eats them. We’ve lost thousands of marsupials to their poison. Now they are taking over all of the northern 1/2 of Australia and spreading south rapidly. They’re now considered a pest.

The English brought rabbits and pigs (for food) and foxes(to hunt) to Australia and now they’ve become a pest too, but it wasn’t until they got to endemic levels that they decided to do something about it. So now, they ‘try’ to regulate the movement of fauna and flora to prevent the dispersion. We’ve always had issues regarding the illegal export of lizards and birds because we have some fairly unique species of both. The common pet Budgie is an Australian bird actually called a Budgerigar and there’s literally thousands of them around the world. I’m not sure if you’ve ever seen the flocks of starlings that fly in a swarm in some European citys, but up around 1000km from me is a river called the Murrumbidgee River. Up around a town called Griffith in New South Wales there were flocks of budgies in swarms just like those in Europe. The Government regulate all wildlife now. But still people go out trapping them to make a dollar and the birds and lizards seem the easiest to catch.

Merl

[JayCS]

Hi Merl, thanks! Interesting how Australia seems esp. hit by the introduction of species that don’t belong and become so difficult.
Is that cos of colonisation combined with a fairly limited area, I wonder?
Yeah, I’ve actually seen flocks of many thousands of starlings one or two times from a distance, a spectacular sight how they swarm, not in cities, but in the countryside. So of course I had to have a look if a budgerigar swarm is the same…

Biggest Swarm of Budgies

Here I think very similar, but they do seem more ground bound than starlings on that recording, cos strarlings also fly high into the sky like clouds of smoke, also divide up and come together again more often.

Both brilliant!

[JayCS]

2024-12-11 Wednesday

Summary:

• Specific notes today: None, just sleep, which was good, no TT yet, but as from tomorrow.
• Local issues to work on: Elbows tendons by stretching and Traumeel. Beau lines on left thumbnail by minimising water contact.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT not yet (). Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Glutathione liposomal Dec24. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. Constipation (me!?) Dec: from switching glutathione to liposomal or from increasing threonate to 2x3g? LDN Jul 18th- 1.5mg for nimbleness .
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Yellow-necked mouse again, closer: love the big ears

Everything else was at our lake: mallard ducks and a male tufted duck (a carrion crow and chafffinchs)

Mallard ducks: couples, flying, diving (a female finding something big), flapping…

Also mallard ducks, but a “miscoloured” (?)female

Tufted male duck scratching himself (plus coot)

Carrion crow and Chaffinches

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

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

1) MAIN ISSUES: TT not yet (❌), talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16? jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 86% (❌), SLEEP 8h35, 20' of that deep dozing ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'very slow' with 7h rest, 7h very slow, 2h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 8h35, 20' of that deep dozing ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: 1h17+7h26-(4+4+=)8’ = 8h43-8’ = 8h35, 20’ of that deep dozing.
22:37 screen curfew OK, no shower
22:43- 2:11 4’ closed 1st w, slight sore throat. 5:43 4’ closed 2nd w still slight sore throat, imbalance, plugs. -7:26, last 20’ deep dozing, still sore throat, calendula, not feeling that restored.

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

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

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) new sleep lab psychiatrist not helpful any more. (Jun 10th) appt. with public health officer for retirement too long. (Jun 26th) Cardio helped.
GP (Apr 25th): Update (cancer and bp OK), will help with disability.
CARDIO: Checks every 2 months, good as I can’t take the CVD meds.
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD: Sorta OK considering no meds tolerated. Click for latest (Jun 22nd) changes, and details...)

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

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

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal Dec 2024.
Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

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

Supps: Nattokinase again Jan 10th- 2025. Mag threonate: Sep 28th- 2x0,9g, to 2x1.35g to 2x1.55g to 3x3g: gut problems. Ellagic acid again Sep 6th-. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th 2023: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th- 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 88% (outdoors more again)

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

Click for development/summaries and see profile...

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

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

[ModSupport]

Hey JayCS,

@JayCS

Is that cos of colonisation combined with a fairly limited area, I wonder?

Yes, it is.
I’m originally from New Zealand and a similar thing happened over there with colonisation. They brought their European ways and tried to farm the same way. NZ was covered in forest, they chopped it down and burnt it all to grow grass for livestock. But the forests were holding all of the soil and nutrients together, when the rains came it washed all the soils away, silting up the rivers and reducing the productivity of the land. 100yrs later and they figured it all out, now they’re having a big push to revegetate and rehabilitate, finding this is increasing their productivity and less use of chemicals and fertilisers to maintain soil health.

In Australia, they diverted the waters from the Murrumbidgee River to grow rice. Thousands and thousands of hectares of land is flooded to grow rice in the middle of what is naturally desert. They have irrigation channels zigzagging all over an area called the Riverina in New South Wales, taking the water to flood the land. This happened back in the 60’s and 70’s and what has happened now is that it has raised the underground salt table, there are areas now that the salt has risen all of the way to the surface and as far as the eye can see, for miles around, everything glistens with white salt crystals, and NOTHING can be grown there. It’s been natural desert for millennia, but then along comes a European mindset and really messed it up. It’s now, you’d think ‘obviously’, had a huge impact on river flows further downstream too. The problem is that each individual state thinks that the water belongs to them and now they’re finding they have to dredge the river mouth because the flows aren’t enough to keep it open. If it closes up fully the whole river would die, but the upriver states don’t care, just so long as they have THEIR water. Very narrow minded. “It’s mine. All MINE” (Evil laugh).

The Aboriginal people knew all of this, but the European’s didn’t listen because they knew better (or so they thought). And now they’re considering using Aboriginal land management practices to better deal with the extremes Australia is having. Bit late, in my humble opinion.

Merl

[JayCS]

@ModSupport

(Evil laugh).

The Aboriginal people knew all of this, but the European’s didn’t listen because they knew better (or so they thought). And now they’re considering using Aboriginal land management practices to better deal with the extremes Australia is having. Bit late, in my humble opinion.

Yep, fully agree, and hope this will dawn upon more/enough Australians, finally! … as well as all people all over the world… (And the current Egomania that is on the rapid increase in all the Western world will fairly quickly dry itself up in a similar way before our whole planet is gutted out… )

Yeah, I can see how my idea was right with the colonisation, not necessarily the limited area. At home similar things were done. England used to be all forest too, wasn’t it even the Roman “civilisation” that started cutting trees down everywhere? But the changes were a bit slower and the people doing it had the consequences a little more under control cos they sensed the dangers better and had a feeling it’s their own place and can’t just rage around haphazardly as they wish like madpeople, ignoring consequences.

OK, after a quick search it seems research is now showing it started long before the Romans, it was all on the go in the Bronze Age already, which was already doing intensive farming:

Who chopped down Britain’s ancient forests? | Aeon Essays

[ModSupport]

Yes, it’s being recognised, but by the time it becomes accepted practice, it’ll probably be too late. We had HUGE bushfires blast through here a few years ago and from all reports the local fires around this state are getting hotter, burning more fierce and more destructive. For them to now finally decide to have a look at indigenous fire management, it’s all a bit late. It’s as if the white man stole the land, stripped the land, made a hell of a mess, then hands it back to the black man and says “you fix it”. The white man has only been in Australia since 1770, 255yrs. The black man been here for 20,000yrs, he has the knowledge.

After the fires tore through here, the local council had a few town meetings, explaining some of the aboriginal fire management ideas. The timings of their fires, so the growth isn’t too big, less fuel=less fire. They have fires when there’s still moisture in the plants, slows the fire spread down. With the big fires it burns everything, intensely, destroying any seed. Again, quick fire, less heat. This is all knowledge the white man doesn’t usually know. We live in houses, not on the land. But here in Australia, knowing some of this stuff can save your life if you get stuck in a fire storm. It can be damn scary, I can tell you that much.

Merl

[JayCS]

@ModSupport

aboriginal fire management ideas. The timings of their fires, so the growth isn’t too big

That’s they make small controlled fires to prevent big ones? Great. I guess some white people know that, but not the details, more about protecting buildings than nature.

Stuck in a fire storm? All hell let loose I guess, unless you have a guardian angel, or are there management ideas for that too?

[JayCS]

2024-12-12 Thursday

Summary:

• Specific notes today: 11:40 table tennis first time again! 0:1 (left-handed) 15:21 Felt ok, I can continue (what?), but 1h later hard holding doing things. 14:01 strong pain in left testicle after bike, no pressure, no injury, but 1-2’ after pain started (in January still). 15:31 shop/post office 1-2’. 15:15 did something against pain, seems OK again. 16:45 fetching grass for the piggies went OK, some energy back, pain 3, not over my limits.
• Local issues to work on: Elbows tendons by stretching and Traumeel. Beau lines on left thumbnail by minimising water contact.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 0:1 (). Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Glutathione liposomal Dec24. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. Constipation (me!?) Dec: from switching glutathione to liposomal or from increasing threonate to 2x3g? LDN Jul 18th- 1.5mg for nimbleness .
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

White-breasted stone marten once again

Brown-black squirrel

Blue tit bathing in metal tub

Woodpigeon

Brown red squirrel

Female blackbird on metal tub

Great tit after and whilst bathing

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 0:1 (❌), talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16? jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 86% (❌), SLEEP 7h58 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'very slow' with 6h rest, 8h very slow, 2h slow, 0h medium/quick.

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

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

Sleep 22:47-6:57. Sum: 1h13+6h57-(4+4+4=)12’ = 8h10-12’ = 7h58.
22:47- 0:18 4’ 1:45 4’ 2w open 4:25 4’ 7:06 up at -6:57

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

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

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) new sleep lab psychiatrist not helpful any more. (Jun 10th) appt. with public health officer for retirement too long. (Jun 26th) Cardio helped.
GP (Apr 25th): Update (cancer and bp OK), will help with disability.
CARDIO: Checks every 2 months, good as I can’t take the CVD meds.
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD: Sorta OK considering no meds tolerated. Click for latest (Jun 22nd) changes, and details...)

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

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

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal Dec 2024.
Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

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

Supps: Nattokinase again Jan 10th- 2025. Mag threonate: Sep 28th- 2x0,9g, to 2x1.35g to 2x1.55g to 3x3g: gut problems. Ellagic acid again Sep 6th-. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th 2023: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th- 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 88% (outdoors more again) - Dec 12th TT possible again!

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: 100s per day, see the pick of pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical”* energy 30% () since LDN.)*
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Simplified: -

Click for development/summaries and see profile...

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

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

[JayCS]

2024-12-13 Friday

Summary:

• Specific notes today: TT 0:2, knackered, but recovery time OK-ish. 18:24 OK afternoon evening , bit in garden, hurting 3-4, fetching guinea-pig-grass no worse. Imbalance + elbow at night.
• Local issues to work on: Elbows tendons by stretching and Traumeel. Beau lines on left thumbnail by minimising water contact.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 0:2 (). Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st, from 11 to 14% Dec 8th, but first short table tennis on 12th.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Glutathione liposomal Dec24. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. Constipation (me!?) Dec: from switching glutathione to liposomal or from increasing threonate to 2x3g? LDN Jul 18th- 1.5mg for nimbleness .
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

White-breasted stone marten … again…

Peacock butterfly hibernating on the bedrom window …
(Spoiler: for 47 days until end of Jan, then moved 30cm, so I brought it into the garden shed, cos I read up it wasn’t getting the <12° it needs. (He did move a little during transport under a glass and afterwards decided I didn’t have the right place for him, but now it’s sitting comfortably on a picture frame, horizontally, head towards the wall)

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

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

1) MAIN ISSUES: TT 0:2 (❌), talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 86% (❌), SLEEP 9h02 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'very slow' with 6h rest, 8h very slow, 2h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 9h02 ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: 1h44+7h30-(4+4+4=)12’ = 9h14-12’ = 9h02.
22:16- 23:47 5’ 0:11 4’ imbalance 1:34 4’ imbalance
3:56 4’ elbow traumeel -7:30

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

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

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) new sleep lab psychiatrist not helpful any more. (Jun 10th) appt. with public health officer for retirement too long. (Jun 26th) Cardio helped.
GP (Apr 25th): Update (cancer and bp OK), will help with disability.
CARDIO: Checks every 2 months, good as I can’t take the CVD meds.
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD: Sorta OK considering no meds tolerated. Click for latest (Jun 22nd) changes, and details...)

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

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

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal Dec 2024.
Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

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

Supps: Nattokinase again Jan 10th- 2025. Mag threonate: Sep 28th- 2x0,9g, to 2x1.35g to 2x1.55g to 3x3g: gut problems. Ellagic acid again Sep 6th-. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th 2023: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th- 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 88% (outdoors more again, starting table tennis)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: 100s per day, see the pick of pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical”* energy 30% () since LDN.)*
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Simplified: -

Click for development/summaries and see profile...

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

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

[JayCS]

2024-12-14 Saturday

Summary:

• Specific notes today: 10:07 TT 2nd mate 3:0 (2:1 cos in 3rd game my mate added 2 points) 17:10 surprising that able to get the guinea pig grass, carry on to the lake, but also sped to catch up with wife on cycle-walk, and hearing some interesting beats from a van I started mentally improvising. Energy now 22-23%, pain 3, maybe histamine flash, or did the tetanus shot help my immune system? f(edit: didn’t). But listening to music just 5’ inspired by the mental improvising hurt. 23:07 evening OK, but procrastinated.
• Local issues to work on: Elbows tendons by stretching and Traumeel. Beau lines on left thumbnail by minimising water contact.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT 3:0 (). Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st, from 11 to 14% Dec 8th, but first short table tennis on 12th.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Glutathione liposomal Dec24. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. Constipation (me!?) Dec: from switching glutathione to liposomal or from increasing threonate to 2x3g? LDN Jul 18th- 1.5mg for nimbleness .
• Last focal seizure: Oct 22nd (+11d) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Just the stone marten 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 3:0 (❌), talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16 jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 86% (❌), SLEEP 8h34 ✅ ('PPA‘: 2➔4 ❌). Energy profile: 'very slow' with 6h rest, 6h very slow, 4h 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): 8h34 ✅, QCS (= most evenings) at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: h48+7h58-(4+4+=)12’ = 8h46-12’ = 8h34.
23:12- 0:44 4’ 2w open. 2:24 4’ 1w open 5:18 4’ -7:58

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

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

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) new sleep lab psychiatrist not helpful any more. (Jun 10th) appt. with public health officer for retirement too long. (Jun 26th) Cardio helped.
GP (Apr 25th): Update (cancer and bp OK), will help with disability.
CARDIO: Checks every 2 months, good as I can’t take the CVD meds.
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD: Sorta OK considering no meds tolerated. Click for latest (Jun 22nd) changes, and details...)

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

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

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal Dec 2024.
Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

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

Supps: Nattokinase again Jan 10th- 2025. Mag threonate: Sep 28th- 2x0,9g, to 2x1.35g to 2x1.55g to 3x3g: gut problems. Ellagic acid again Sep 6th-. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th 2023: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th- 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 88% (outdoors more again, starting table tennis)

No ‘research’ today
Lessons in self-care: -
Reasons to be cheerful:
a)-d) Plant, bird & animal life/interaction: 100s per day, see the pick of pics
e) Human life: (TT laughter Skip-Bo Wife )
f) Environment: (outdoors/fresh air ~15h/d .)
g) Body: (“Theoretical”* energy 30% () since LDN.)*
Foggies: (Body (). Brain (). Jittery () since 2x3g/d magnesium threonate)
Simplified: -

Click for development/summaries and see profile...

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

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

[JayCS]

2024-12-15 Sunday

Summary:

• Specific notes today: TT n/a 13:21 hurting 4 coming up stairs, dunno why. Put iron filing pads in for warm feet works a treat. 17:14 managed 2h with the kids with a few breaks, most difficult bit was where I spoke about myself/my injury for 5’, able to play and listen tho. 23:04 no backlash after the kids. Evening procrastinated together. Something my wife said jolted a set of quick memories / thoughts about life might have been different, which set off a short power-cut in my brain, so slight seizure. Make sure not to repeat.
• Local issues to work on: Elbows tendons by stretching and Traumeel. Beau lines on left thumbnail by minimising water contact.
• Biggest issues: Usable energy 14% (), energy profile ‘very slow’ , TT n/a. Music 5’ ➔ pain of 5 , people 10’ 4-5 . Weight (ideally 80kg): ? kg .
• Latest big trigger: Surgery with tetanus for slit finger Nov 19th-. Energy from 9 to 10% on Dec 1st, from 11 to 14% Dec 8th, but first short table tennis on 12th.
• Last treatment improvements: Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Glutathione liposomal Dec24. 3x0.3 GABA instead of 4 at night improves seizure-ishness. Magnesium threonate Aug 15th- for sleep, fog, tension & jitter, GI sfx better. Up to 2x3g/d Nov24. Constipation (me!?) Dec: from switching glutathione to liposomal or from increasing threonate to 2x3g? LDN Jul 18th- 1.5mg for nimbleness .
• Last focal seizure: Dez 15th (+54d!) .

Pic(k)s of the Day

= expanding happiness, appreciating the many little things…

Wren in my meadow

Small Spider and even smaller Leafhopper I can’t identify

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

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

1) MAIN ISSUES: TT n/a (❌), talking/listening 10' ➔ 80%/4-5 ❌, music 5' ➔ 80%/5 ❌, white lips 80-100% ❌, moving ➔ 80%/4-5 (❌), balance (❌), body fog (❌), 16? jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘ (❌), stiff (❌), nimble (❌), tense/jittery (✅), EXHAUSTIBILITY 86% (❌), SLEEP 7h54, 30' of that deep doze (✅) ('PPA‘: 2➔4 ❌). Energy profile: 'very slow' with 6h rest, 8h very slow, 2h slow, 0h medium/quick.

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

SLEEP (click for tonight's details): 7h54, 30' of that deep doze (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-:. Sum: h50+7h20-(4+4+4+4=)16’ = 8h10-16’ = 7h54, 30’ of that deep doze.
23:10- After cold showering like almost every evening, 3w open.
1:02 4’ elbow. Curfew late. Fresh air only 16-18h/d,
2:36 4’ 4’ Traumeel.
3:57 4’
4:19 doing something on laptop 2’ woke me up too much, rather than calming thoughts like I hoped, so NSDR.
-7:20

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

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

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

DISABILITY: (May 29th) Allergist helpful, report came (Aug 21st) after asking again. (Jun 7th) new sleep lab psychiatrist not helpful any more. (Jun 10th) appt. with public health officer for retirement too long. (Jun 26th) Cardio helped.
GP (Apr 25th): Update (cancer and bp OK), will help with disability.
CARDIO: Checks every 2 months, good as I can’t take the CVD meds.
DERM (Mar 19th): wart (but tea trea oil helped) on genetic enlargement under toenail.
ONCO: #2 (Jan 8th/11th/18th 2024): nothing in bloods or contrast CT, believes it’ll be nothing docs can find, the week of reactions likely from some excipient(s). That finishes the cancer exclusion Odyssey since April 2023.
URO (Nov 8th) IPP/PD shockwave therapy? (Bladder exam July 31st and bloods Aug 7th followed the vertigo/BP attack on the 9th - so maybe contributing, altho Aug 8th I could play TT 5:1.

(CVD: Sorta OK considering no meds tolerated. Click for latest (Jun 22nd) changes, and details...)

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

4) UNDER CONTROL ✅ (attention necessary (✅)): Starting up Nattokinase 1x0.1g again Jan 10th- 2025 concurs with coming out of the finger slit flare. Elbow tendonitis since Aug24, improving Dec24. Mag threonate: Up to 2x3g Nov24- and Glutathione liposomal Dec 2024: is one causing constipation? GABA down to 3x0.3g at night, +3x0.6g. Run of out lumbrokinase. Taking ellagic acid, but not B2, B3, Betain. Last focal seizure: Dez 15th (+54d!) ✅. Last esophagus block Sep 25th (always able to flush them down now with big hard gulps). LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal Dec 2024.
Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)

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

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

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

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

SELF-TREATMENT & SUPPS optimal, stable, but necessary. Mag threonate: Up to 2x3g in Nov24 with constipation. GABA down to 3x0.3g at night Nov 28th-, +3x0.6g. Glutathione liposomal till at least June 2025. Treating elbows tendons by stretching rather than pressing and Traumeel. Lumbrokinase Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)

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

Supps: Nattokinase again Jan 10th- 2025. Mag threonate: Sep 28th- 2x0,9g, to 2x1.35g to 2x1.55g to 3x3g: gut problems. Ellagic acid again Sep 6th-. Run ouf of lumbrokinase, C 3x0.6, not (like Masterjohn suggests) 0.4, no B2, B3 or Betain HCl any more for a month or so. Lumbrokinase Jul 17th- at 3 & 8, Aug 3rd- 8:00 & 13:00 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 19th/20th 2023: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. Nattokinase Nov 4th- : 1x0.1g, from 15th- 2x0.1g. LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 88% (outdoors more again, starting table tennis)

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

Click for development/summaries and see profile...

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

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