2023-12-29 Friday
Summary:
- LDN (2.25mg):
: TT too social 
. Energy 30% - so it’s jumped back up - peopling today only caused pain, not (like yesterday) an energy dip, so walking / cycling 60’ . - Weight down to 75.2kg, close to where it was March… worries my wife.
- Cheer: Carrots! Walnuts! GreatTit on balcony! No esophagus blocks for ages! Lots of other improvements are stablem too!
(V)LDN: Dec 27th- 2.25mg. (Slowly up from Oct 1st ~0.07mg.) 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 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, 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' ➔ 70%/3 ❌, music 10' ➔ 70%/4 ❌, white lips 70-100% ❌, TT felt too social to do today ❌, moving ➔ 80%/3 (✅), so: post exertional malaise ✅, "post postural ache", "PPA" ✅, stiffness ✅, exhaustibility "70%" ✅ and sleep 8h ✅ ("PPA": 2-3 (✅)), 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): 8h, up 2x (10'), all deep. ✅, everything else OK ✅ (22 issues under control, see template), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:10-7:20 2x5’
Sum: h50+7h20-(10)’ = h-’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅, but peopling 5' ➔ 60%/4 ❌: my wife enjoyed my silence, my TT mates missed me, I couldn't even phone to say no. Weight Friday 75.2kg, Saturday 75.6, after digital first said 73.9 - no better than analog... Click for list...."
(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks took my appetite.
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 7th uro exam and methylene blue trial.
(9) Aug 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.
(X) Improvements (Sep 12th): Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night .
(X) Intermediate status: These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(10) Sept: 10a) Further painful bladder exam injured (‘screaming’ 3d), 10b) scarred me (4th-), 10c) caused UTI (2x3d). 10d) CoV-type infection (12th 10 days) [edit Dec 27th: was that a hantavirus infection from our bank vole?], 10e) binge work stress (mid-month for 4 weeks), 10f) abdomen pains, 10g) listening to music painful (24th), 10h) Harley needs feeding up cos of 3 types of bad teeth starting Aug/Sept, 10i) wife wrought-up Sept. 10j) 18th: CVD meds problems, so stopped again for the time being. (27th: New GP helpful.).
(11) Oct: (V)LDN helping a “lot”, 11a) 17th: Complex filling - only 1-2 days recovery. 11b) 23rd/24th: CVD meds dreadful, so 26th re-started with BP specks up to 4mg spread, with only slight side effects.
(12) Nov: 12a) 13th atorvastatin even specks difficult, 28th: 1+1+2mg caused insomnia, 29th 1mg OK again.
(13) Dec 13a) 7th: One distracted moment let Stuey fall from sofa, breaking his front teeth off, so 13b) now 2 guinea pigs to feed up. 13c) 8th: energy dip in the mornings, probably atorvastatin 13d) 9th: Shop coupon 13e) Boss mail. 13f) Post postural Ache/Pain at night off and on partly from “too good” sleep. 13g) 13th/14th: Histamine reactions: Runny nose, headache and burnt tongue 14h later (lasting till Fr9:00 and counting) after 2x DAO before 200g baked beans and yogurt. But 18-20th: DAO helping with walnuts (even a chip without DAO before?!). 13h) 21st: Harley’s lost 7% in one week. 13i) 26th: 3-5 half walnuts seemed OK, even without DAO, but after 100g baked beans a few hours later tongue burning (right side this time, left side a bit, not tip). 13j) 28th car trip to kids and and only 2x20’ with them with lots of breaks alone outside (1h45 altogether) depleted energy, pain of 5-6, better again 29th, except when peopling, even wife.
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 (✅)) - Dec 28th: New B5, next feverfew & rhodiola, but leaving honokiol and ellagic acid. Walnuts good without DAO, still trialling baked beans (tongue vs. sinus headaches). Drinking only 2L: from LDN? Supp costs seem down to 350€ from taking less and getting them cheaper.
1) GI, pee, local pains, weather, dry mouth, drinking 2L/d well under control: Details...
2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Dec 2nd (1) & 3rd (1), Nov 20th(?) (1,) Nov 13th (1), 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last focal seizures: 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. 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of 2022. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.
SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Dec 28th: New B5, next feverfew & rhodiola, but leaving honokiol (cos not convinced of available products) and 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. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, 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: Shouldn’t overdo the walnuts, but the other day I had 3-5 halves or so, with only a slight reaction, so I should keep this up. Maybe more important than trialling baked beans.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
b) A GreatTit was comfy eating from a new food opportunity I’d hung up for quite a time.
f) Environment:
g) Body:
ga) I can now eat raw carrots and sweet potatoes without getting an esophagus block again - dunno why, but it’s a treat.
gb) Not had a full block for >2m now, apparently!(?), so I’ll reduce the details on that.
gc) I’m delighting in at least half a walnut for every meal without a tongue reaction, increasing to 2 halves now.
gd) Got GABA/serotonin back under control with 4g/d (like always since the jabs)
ge) deleting all the following from #4), as no issue for months now:
gf) Seldom have bladder pain now, sometimes a 1-2. And urge, frequency and loss down since being able to drink a lot less.
gg) stools always good,
gh) dry mouth better with salivating technique(s).
gi) Right foot has hardly any issues. (Only whilst it’s cold?)
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