2024-01-12 Friday
Summary:
- LDN (2.5mg):
: TT not well possible. Energy 20% (considering), walking cycling 30’ (considering). - Triggers: Still the contrast dye: mainly Ache 5, energy and stiffness not much less. Rest helped.
- Cheer: Some kind of finch?!
- Research: Appelman / Wüst et al.: Muscle abnormalities worsen after post-exertional malaise in long COVID - very interesting and fitting.
(V)LDN: Jan 10th- 2.5mg. (Slowly up from Oct 1st ~0.07mg.) Click for effects/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, Jan 10th 1x2.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
[details=“1) MAIN ISSUES: talking with wife OK, not anyone else 20’ ➔ 70%/3 , music 15’ ➔ 70%/3 , white lips 70-100% , TT impossible, moving ➔ 80%/5-4 (, better in the evening), SO post exertional malaise (), “post postural ache”, “PPA” (), stiffness (), exhaustibility “80%” () and sleep 8h27 (“PPA”: 2 ) - curling up into a ball before getting up decreases stiff time greatly, 20’-NSDR immediately “1h” before getting up was good again. Energy profile: slow, with “8h rest”, 0h very slow, 6h slow, 2h medium, 0h 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): 8h27, all deep, up 3x (40'), all deep. ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:30-8:37 30+5+5=40’ 30+8h37-40 = 9h07-40=
[/details]
2) Watching "monthly" TRIGGERS, esp. of exhaustibility: Contrast dye still. Histamine foods: slight tongue burning from mandarine and walnuts, so that may be adding itself to the contrast dye (✅). Strain ✅: Only research and a nicely challenging work project. 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 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, then injected caused a lot of overall Ache, not too bad for energy and stiffness.
3) DOCS: ONCO: #2 Jan 8th/11th: believes it's nothing docs can find, but just in case contrast CT of torso Jan 11th, results per phone about 18th. CARDIO (Dec 11th): Rosuvastatin? Click for details.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/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?
CVD med effects: Atorvastatin Dec 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.
4) UNDER CONTROL ✅ (attention necessary (✅)) - Reduced histamine/DAO. Got B5, B9/12, rhodiola, resveratrol & honokiol, ordered GABA, L-carnitine and akilwinter cream. Feverfew may reduce serotonin. Supp costs up from 350€ gradually since LDN to now 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 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 9th: got B5, B9/12, rhodiola, honokiol and resveratrol. Leaving ellagic acid (not convinced of use), not sure about feverfew (serotonin). Jan 10th: LDN 2.5mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/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 Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. 11th: ordered GABA, L-carnitine and akilwinter cream. 10th: Got B5, B9/12, rhodiola, resveratrol and honokiol, leaving ellagic acid (not convinced of use) and praps feverfew (may reduce serotonin). 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:
‘Research’ today**
Muscle abnormalities worsen after post-exertional malaise in long COVID
What they found fits exactly to how it feels for me, with both exhaustion from fibro and from the post vac type of Long Covid I have.
And seems to confirm what I’ve long suspected, no surprise to me.
I like reading this stuff put in context by Cort Johnson on healthrising (he sent it in his newsletter on Tuesday).
Two interesting comments of his:
“A small but stunning Dutch study” and “A similar ME/CFS muscle study is underway.”
My summary of Cort Johnson’s explanations of what the researchers found:
- 25 Long CoV vs. 21 recovered people (with same virus levels!). Muscle biopsies before and after exercise.
- Lungs: “problems moving air in and out”, so too low CO2 in blood and too little O2 for muscles (similar in ME/CFS).
- Perhaps slightly thinner muscle blood vessels.
- More “fast-twitch” muscle fibres that don’t need oxygen (“anaerobic”) and are good for short spurts, but not for endurance, they can’t produce as much energy, but leave behind lactate causing “muscle soreness”.
- Thinner fatigue-resistant muscles fibres in females (he doesn’t go into this though, cos the study doesn’t either).
- Less of an enzyme (SDH) in the energy part of each cell (mitochondrion) as opposed to more in recovered people.
- Less substances for the energy production type that uses oxygen, even at rest, e.g. citric acid and creatine.
- Microclots (amyloids) aren’t clotting blood vessel, but the amounts increase, compared to pre-CoV/healthy.
- More wasting (in 80%) or dead (in 36%!) muscle fibres after exercise compared to before (in 50% re. in 10%) (atrophy vs. necrosis). (autoimmune response? But why? Same virus levels in both groups mean it is not the virus! Step counts showed it wasn’t from de-conditioning). Likely means exercise is bad.
- All with Long Covid had this post exertional malaise, but the patterns varied with the same end - likely same in ME/CFS.
- For what we can do, Cort says “exercise does not fix the problem”, only after something else has helped, and
- Some people with ME/CFS get help from creatine, and it’s been recommended for Long Covid too.
If this small study and similar ME/CFS ones before can further be confirmed, the main points I assume are - ME/CFS post exertional malaise and perhaps even fibro fatigue might also come from:
- too little oxygen somehow decimating endurance and causing short spurt muscles to increase, to compensate.
- certain energy production mechanisms are askew,
- decreasing usable muscle fibre by forcing exercise, this is “tissue damage”, “severe exercise-induced muscle damage”.
- possibly microclots causing problems somewhere, even if they didn’t stop blood flow.
For Long Covid incl. post vac: It isn’t the lingering of the virus / spike protein, as the levels were similar in both groups.
My main questions:
- How come oxygen in muscle cells was not found reduced, but oxygen wasn’t being used/taken into muscles properly? (that seems one of the questions for the researchers too).
Creatine I’ve had sitting on my desk for over a year, maybe time to use it. If the HCl doesn’t work well, praps the malate form: Monohydrate or malate - which type of creatine to choose? - Poweringo
Interesting offshoot: My creatine kinase increased in 2022 to over the max. and was still partly high in 2023, which means muscles are injured from exertion, too little oxygen or a fall. But this study showed no increased creatine kinase.
Quality of life: 90%
Lessons in self-care: Rest, rest, rest!
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
b) Saw and heard a pair of some kind of finch ?! near the feeding boxes, very loud, pioing electric type call.
e) Human life: Good to help someone out at work.
g) Body: I think I’m getting away with only a short Ache period from the contrast dye.
Simplified: Just in case I’d occassionally miscount how much I’m up AND how much GABA I’ve taken, I’ve started to put 4 small ones out and can then see if any are left in the morning.
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