2024-01-03 Wednesday
Summary:
- LDN (2.25mg):
: TT 6x (2:4) , altho energy 30% and no woozy head - no idea why, walking / cycling around for guinea pig grass 60’ . - DAO: 3x at 19:40 for 175g baked beans , no reactions…
- But are the seizures etc. caused by histamine from baked beans?!
- 30’ music in short stints, even complex.
- Cheer: Very near Blackie and Robin! So looking forward to the early bloomers! Ford from all the rain!
- Self-care: Can’t be praised enough
for taking over all the feeding care of (my wife’s) guinea pigs, incl. the emotional challenge, to save her from that.
(V)LDN: Dec 27th- 2.25mg. (Slowly up from Oct 1st ~0.07mg.) It's likely LDN reducing histamine/tannin of walnuts. Mustn't forget it! Click for details on effects and dosage...
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and
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: 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.
Additives: white capsules with TiO2 (HPMC with SiO2).
CVD med effects?: Atorvastatin 16th- 0mg ✅ - postponing further trials. BP ✅. Click for details...
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 . 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.
1) MAIN ISSUES: talking 10' ➔ 80%/3 (❌), music 30' in shorter stints/background, even complex ➔ 70%/2 (❌), white lips 70-100% ❌, TT 2:4 (moving 40%, talking 20%, counting 20%) ➔ 80%/3-4 (✅) - don't know what went wrong, my mate also believed it's something to do with me and my wife said I was white-grey-green when I came back (but see Triggers and Self-Care a)); moving ➔ 80%/3 (✅), SO post exertional malaise ✅, "post postural ache", "PPA" ✅, stiffness ✅, exhaustibility "70%" ✅ and sleep 8h30 ✅ ("PPA": 2 ✅), energy profile: medium, with "4h rest", 0h very slow, 2h slow, 9h medium, 1h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but improvement only if I stop atorvastatin for a few days.... Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 8h30, up 5x (20'), all deep. ✅, everything else OK ✅ (22 issues under control, see template), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:30-8:20 5x4’=20’ Sum: h30+8h20-(20)’ = h-’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Trialling baked beans with DAO, today (3rd) 175g with 3xDAO seemed OK. But are the seizures, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that's decreasing serotonin? Click for list...."
(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 issues and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin?
3) DOCS: CARDIO (Dec 11th): Rosuvastatin? ONCO: Appt. with onco#2 Jan 8th. (Check lymph nodes, liver and spleen sizes onco#1 wrote.) Click for details.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
4) UNDER CONTROL ✅ (attention necessary (✅)) - Jan 3rd: Slight pee pain, urge, loss. Got B5 and B9/12. Ordered rhodiola, resveratrol and honokiol. Not sure about feverfew now cos it may reduce serotonin. Trialling DAO for baked beans. Supp costs down from 450€ to 350€.
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 esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec) to 4-weekly (before May, July-Sept). Increases from stress, histamine, and less GABA. Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th(?) (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 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 whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Jan 3rd: got B5 and B9/12, ordered rhodiola, and resveratrol, not sure about feverfew, found and ordered a possibly good honokiol product, leaving ellagic acid (not convinced of use). 27th: LDN 2.25mg. Dec 24th: ~28 supps + nattokinase (was 40) costs ~350€/m (was 435€/m) +20€/m cps. Last changes see before Aug 22nd.
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 Dec 24th: 28 supps (was 40) costs 353€/m (was 435€/m) +20€/m cps. Dec 28th: New B5, next feverfew & rhodiola, but leaving honokiol (cos not convinced of available products) and ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h, so new. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Lessons in self-care:
a) Full 30% energy for TT and no woozy head, felt good and concentrated, but lost 2:4 and came back white-grey-green, said my wife. That and slight pee pain/urge/loss fits in with the seizures on Monday 1st, also the times - seizures around eating time: so do I need to increase GABA? Is it caused by histamine from baked beans, decreasing serotonin? I’ll stop eating them and see if it adjusts itself.
b) It’s a big emotional challenge to feed etc. Harley for 5h/d (not all the time, but still) and then put him back and he loses more weight in between than he gains from feeding, so it’s a long drawn out farewell, but I’m saving my wife from the full depression of it and that’s good and she’s very thankful for that. And he’s having a good time, it seems he’s enjoying life more than suffering, so we don’t at all feel we’re “prolonging his suffering”. Who knows when and how that will flip, I hope I’ll just find him asleep one morning.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Rain encouraged me to stay away from any new snowdrop sprouts.
b) Blackie and redbreast were really close in the firethorn and I could walk slowly and very quietly past them with my cycle.
ca) Sweet how Harley often sits directly next to me on the floor to eat, and
cb) how he sweet talks with his cage friend, this evening esp. loving.
f) Environment:
fa) Went to the new meadow again, heard a robin or praps wren.
fb) A ford near a sea had developed from all the rain, reminded of driving thru a ford in a Ford as child.
g) Body: Energy fun.
Click for development/summaries and see profile...
More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023