2024-04-25 Thursday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg
: Energy 30% , partly usable = 15% (
), energy profile “very slow”, TT 2:0 , jackknives , walking / cycling 10’ (). - Creatine monohydrate Apr 9th- 2x5g (Mar 19th- 2g, 6th: 2g and 5g). Increasing slow energy.
- Triggers: (Tooth treatment ) 15’ GP appt. 15’, 15’ work video conference. Specks of marmite.
- GP visit: Sick notes sometime next, he thinks earlier, I think later (cos I’m still working a bit).
- Cheer: Robins coupled 1m from my foot! 3 ravens attacked magpie nest! Field mouse jumped out of feeding bag (not unexpected)!
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
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: 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 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 2:0, effortless (moving 10%, talking 10%, counting 20%) ❌, moving ➔ 80%/3-5 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "85%" ❌ and sleep 7h15 ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. 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): 7h15, all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep :-: x5’, 0 deep doze. Sum: h+h-(x5’=)’ = 7h30-15’= h.
#1 bed 22:35- 23:45 5’ pee pain 3, 1:15 5’ 4:05 5’ 2 brown -6:05 5’ slight headache. +5’ doze. = 1h25+6h05-3*5 = 7h30-15.
2) Watching TRIGGERS, esp. of exhaustibility. 15' doc appt. 15', 15' work video conference. marmite. Histamine foods: kefir, 20g goat cheese, specks of marmite (✅). (Pee better) Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(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.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: GP suggested I take up contact with school if sick notes are necessary and would think about possible diagnoses, however Long Covid doesn't really fit, and post vac isn't on the ICD yet. Afterwards my wife agreed with me that adding CFS might be fitting. And possibly try increasing my severely disabled status. Wife came with me and explained the "drama of the situation" from her point of view, how bad I am, even talking time with her limited. Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
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: Click for latest (Mar 21st) & next changes, and details...)
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 (✅)): Praps reduce washing hands again to improve the severe Beau lines? Pee problems a lot better today, but pee pain 3 at 23:45, and still occasional accidents. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2). Click for latest (Apr 23rd) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
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 SEIZURES: 1-2x/m - Apr 22nd (2) 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd 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, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Apr 22nd (2: after TT), 8th (4: errands,
eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) 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, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), Mar 21st- LDN 3mg, (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). Jan 16th: LDN 3mg. 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: Carnitine Apr 14th-, EGCg Apr 13th-. Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 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 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. 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, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not 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:
If and when I go to the public health officer to finalise my disabled retirement, which may take up to end of the year I guess, I may be able to do it by phone, hopefully someone I already know, that would make it easier, but there’s nothing new anyway.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
- I keep forgetting that one of the rhododendrons that isn’t flowering yet is the one behind the rest. Pic 2023-05-09 10.11.52 was identified as maximum, but then it’d be flowering now along with the maximum at the front (took first 2 rhododendron maximum flowers off, cos wilted.)
- Sightwort (chelidonium) blossoms increasing (neighbourhood much more than mine) at front and now back of house, but the main pot area is still waiting for sun.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: …21:00 / 5:00…
(Regular cheer, song/calls/seen: Greenfinch Chaffinch Chiffchaff Wren Collared dove, down the road: song thrush)
- 3 Ravens attacked magpie nest, in and around there loudly more than 5’ till the magpie pair chased the first 2 and the 3rd raven finally flew off. One magpie child did remain, but praps some eggs were lost. Tried to film (12:40).
- Magpie eating something on sculpture, but couldn’t detect afterwards what, before the raven incident.
- Robins coupled 1m from my foot. Both close to me singly after too.
- Nuthatch down cherry trunk and into the birdhouse.
- Willow warbler (Fitis) I think, during table tennis, sounds a bit like a chaffinch to me.
- Song thrush: Listened to and filmed again on the way back from TT (also a chaffinch with a slightly different motif to the main one, and a chiffchaff).
- GreatTit into nesting box after shaking water off from bathing. Another time: soft GreatTit alarm call near nesting box again.
- BlueTit baby ate sunflower seeds in birdhouse and parent got box wood moth stuff (so animal food) out of the boxwood. (Blackbirds need a lot of animal stuff in the beginning, so praps all birds).
- Rest is mainly blackbirds preparing their 3rd nest, today, Apr 25th:
- Blaxie gathering nesting materials in the wood corner and in the pot area, so the 3rd nest isn’t finished yet.
- Blackie flew up to their old nest, all I heard then was a sharp enemy call,
- Blaxie continued gathering and suddenly vibrated her wings as if she were a little one.
- Heard a loud sharp cheeping like from the nest or behind it early Sunday morning in the garden diagonally, but only once. Is that a hatchling (Ästling)?
- Blaxie making short high calls, but don’t know for whom.
- I’m wondering if this will be their 3rd nest, cos looking back (here) she was gathering nesting materials Mar 1st, flying to the garden diagonally from ours. However this 2nd brood only seemed fed for around 3 days: 18th to 21st, or did I catch on late?
- Looking back: Feb 28th Blaxie found last year’s nest. Mar 1st to 4th gathering for 1st nest (diagonally). Mar 22nd+23rd gathering material for 2nd nest in my ivy. 29th I disturbed Blaxie from nest. Apr 25th gathering for 3rd nest.
- Read their schedule on wp: 2-5 days for building, 1-3 days for first egg, +1 for each further one. Hatching after 10-19 days, for 2 days. Leave after 13-15d, start flying on 18th day. Humans, cats and magpies biggest problem. Low nests better. So shortest nest to hatch possible: 13 days, leaving 13 days later = 26.
- So at that rate I think it’s well possible that the broods were “finished”, altho maybe unsuccessfully.
- Blaxie appeared to fly sharply around the corner as if to the old nest, confusing.
- Blackbirds and robin don’t “like” me singing or looking to them any more, fly away quicker than before, but maybe just generally more unrest. But they are “Bird watching” = I’m often being watched by them, esp. the robins, on the balcony don’t mind me standing near inside or out.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bank voles Insects: bees, bugs
- Harley so happy to be in my room again for the 2nd meal that he started making squeaky enjoying noises, rumbling.
- Field(?) mouse in the right feeding box shortly before bed, filmed close, definitely not a bank vole (Still need to distinguish which mouse and also which it likely was in the cellar).
- Field(?) mouse “shook” and jumped out of the bird food bag whilst cleaning the feeding box earlier than usual (7), so that answers the question I was pondering if it’s the bank voles or the field mice in there…
e) Human life: (Skip-Bo Wife )
f) Environment: (Outdoors .) Before bed too. Hot water bottle sometimes.
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain ().)
Simplified: Thought of any easy way to start preparing my new supps altho I haven’t quite finished the last one.
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