2024-05-26 Sunday
Summary:
- LDN May 20th- 3.5mg (Mar 21st- 3mg)
for Energy “30%” , partly usable = 20% (
), energy profile “slow”, TT n/a, (jackknives ), walking / cycling 25’ (). - Creatine monohydrate Apr 9th- 2x5g for more slow energy.
- Triggers: Ear plugs all night improved sleep, so noises are keeping sleep shallower than I realise(d). Stopping walking and stepping aside is (like stopping cycling) a challenge for brain-body-muscles, see 1). My IPP has become drastic, but not hurting, so shockwave therapy before it does?
- QCS at 7:45, at 4:00 might’ve been better.
- Thoughts: (The phrase Merl answered to here is now in Saturday’s entry here.)
- Feelings: Funny now I’ve caught up with the blog that this entry seems pretty short. Still took a few hours it seems, I should note how long.
- Cheer & pic(k)s of the day:
Dreaming about not letting myself be pressurized is good practice. Short walk. Swift swooped near. Guinea pig gained 90g.
What I called Batman hoverfly yesterday isn’t even a fly, it’s a wasp beetle, harmless mimicking a wasp, so I’ll edit that. But:
Hoverfly - yeah, I think that’s the one, Batman hoverfly? - on purple blue fairy bellflower:
2 tiny red spiders on purple blue fairy bellflower (bet you didn’t see them in the last pic, did ya? If you can even zoom in enough now…):
[White rimmed bumblebee on deadwood:
Celandines, stone pile and sandarium (now with some water…) covering the patio for insects and hopefully reptiles, like last year’s Alpine newt:
Elderberry blosssoms:
Hydrangea budding close up:
Climbing rose is shooting new leaves, love that:
Evening primrose growing, love those red tinged leaves at the bottom of the big ones:
Lavender on balcony with brilliantly rotting wooden railing, the wasps love it, so do I:
The Pelargonia (“Geranium”) grew several half-blossoms now before I brought it up to the balcony, yep, it’s gonna be fine:
And my treasure trove of buckets filled with liquid silver 
, some of which now have to be moved…:
Hmm, what made me think I didn’t have anything I felt special today? 
I always have tons.
LDN: May 20th- 3.5mg (Mar 21st-May 19th 3mg), click for effects/dosage...)
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.
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).
19:52 during a short walk I coul confirm very clearly that my body-brain connection goes wonky and I start stumbling as soon as I stop a regular movement, for instance cos someone is in the way or passing. So far I knew this happens after I get off a bike, and realised I have to be careful with any irregularities when in a shop, have to place my feet firmly and slightly apart. But this time it was very clear that it was stopping walking in a line and trying to do something else, in this case going to the side so someone could overtake us. My wife held me a bit so I didn’t stumble. The other day in a shop when someone went past he felt he had to put his arms out just in case. I start stumbling and can’t control my muscles anymore. So apparently they (have to) get into the rhythm of the movement to accomplish something like cycling or walking. That’s walking sort of fairly normal speed down to half normal, instead of less than that, like shuffling in the flat. This might get to be a clue as to causes and treatments, and of course definitely for workarounds, just knowing, anticipating and warning people. And it’s something I can put on the disability claim too.
1) MAIN ISSUES: talking 30' ➔ 80%/3 (❌), music 5/20' ➔ 80%/3 (no nausea, strain less) (❌), white lips 70-80% (❌), TT n/a, moving ➔ 80%/3-4 (✅), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" (❌) and sleep 7h54 ✅, helped by ear plugs all night (vQvCS: ✅, "PPA": 2 ✅). Energy profile: slow, with "5h rest", 3h very slow, 8h slow, 0h medium, 0h quick. Click for past months...
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, all deep, helped by ear plugs all night ✅, QCS at :00 QCS = very quick very cold shower (first unnec due to LDN, but started up again in ?March praps when warmer, everything else OK ✅ (22 issues under control).
Sleep 23:00-7:19 5x5’, 0 deep doze. Sum: 1h+7h19-(5x5’=)25’ = 8h19-25’ = 7h54.
23:00- bed? (or 23:05)
0:14 5‘
2:23 5‘
4:15 5‘ Wondering if I can bend my IPP to the other side, cos it’s very drastic now, altho still not hurting. And makes me think I should get some shockwave therapy done on it before it does start hurting.
4:15 leaving ear plugs in all night seems to be improving my sleep.
4:15 dawn chorus, beginning, cos blackbird further away, and only 1-2 robins.
6:12 5‘ been dreaming a lot about not letting myself be pressurized, as if I were practicing.
6:12 throat dry as ever, bit daft that I’m waking up now, cos it’s too late for a QCS if I want to get up at 7. Again ear plugs seem to be helping sleep.
-7:19 slight sinusey headache, deep dreamy sleep, bit too warm, so QCS now is good.
2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: 20g goat cheese (✅), x specks of marmite (❌). Strain: Dentist's local anaesthesia on Feb 15th triggered a severe flare until around Apr 28th ❌, next I'll need 3 tiny fillings, 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.
(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).
(3) DOCS: Wondering if I can bend my IPP to the other side, cos it’s very drastic now, altho still not hurting. And makes me think I should get some shockwave therapy done on it before it does start hurting. Click for latest (April 26th) details.)
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
CARDIO (Apr 26th): Heart OK, (Feb 2nd) Belly plaque still “25” OK, next with bloods. (Dec 11th) Rosuvastatin?
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 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 (✅)): Last seizure May 21st (1): 8 days without. Last esophagus block May 7th: 7 months without. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN May 20th- 3.5mg. Mar 21st-May 19th 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2), May 2nd (1) 13th (1). Click for latest (May 13th) & 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 - May 21st (1) 13th (1) & 2nd (1). Apr 22nd (2) & 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st 2024. 2023: 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 BLOCKs May 7th. Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8, 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. May 21st (1 after TT probably from forgetting GABA the day before) & 13th (1: too little sleep) 2nd (1: after TT) 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: 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 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), LDN May 20th- 3.5mg. Mar 21st-May 19th 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-. LDN May 20th 3.5mg (Mar 21st-May 19th). 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: 92%
Lessons in self-care:
Reasons to be cheerful:
Wife annoyed about my buckets where she hangs up clothes in the cellar, but no problem to find new places for them, like on the veranda, and I know actually she was just narked that she had to hang up clothes late when she long needed to be in bed. I’d tried to help by leaving her to feed the guinea pig(s), but he was starved, cos he can’t pick his food up, so I was similarly up much longer than I wanted, which took the blast out of her annoyance, esp. when she heard that he’d gained 90g, 8% weight.
6:12 Been dreaming a lot about not letting myself be pressurized, as if I were practicing - not bad, ey?
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
19:52 On a short walk in the neighbourhood we saw the enormous branch of a chestnut fallen and cut up under it, dunno if it bust any cars.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows (Nuthatches) Magpies (Dunnocks) Great&BlueTits Jacks Chaffinch (Chiffchaff) Collared dove Blackcap Swifts 20x Birds bathing 2x ) Latest / earliest robin song: …22:05 / 4:00… (10’ later/earlier since May 16th).
(Regular cheer, song/calls/seen: Wren Raven(s) Crow)
- Blackcap 9:39 blackcap’s back 10:16 again, always shopping around, big area.
- Woodpigeons 9:45 never see woodpigeon’s nest unattended, even feel it’s always the same one, but usually can’t see from the angles possible. 18:57 could see her neck area for a change, same as one I’d seen before. I then heard cooing from there, no one else in sight, which seemed to say: Someone come and swap please, I need to eat!
- Blackbirds 21:14 our blackbird and the neighbour are both singing on their highest peak, both on the highest houses, 5 storeys, on something human-made sat vs. normal antenna, and us in the middle of their auditorium, in full stereo.
- Swifts 21:48 A swift 5‘ came past the balcony 3-4x, my wife first asked if it was a big brown bat, but then I saw him very clearly. So maybe checking out our nesting boxes?? Looking at yesterday’s tapes I see that swifts too near will be too blurred cos of their fast movement.
c) Animals: (guinea pig antics . Redbrown squirrel 0)
Bats 0. Bank voles 0 (more back of garden now). Insects: bees, bugs
Guinea pig: roller coaster for me, 22:45: I started feeding him from 21:30 on, realised he can’t take any food, weighing he’d gained 90g over the day, repeated weighing cos I couldn’t believe it.
e) Human life: (TT laughter Skip-Bo Wife Art Music listening Nice talks )
21:14 been talking to wife and exchanging photos from what we’ve been doing the past days.
f) Environment: (Outdoors .) Rain: Strong, but too short for anything effective, not even a bucket full. Wife narked about where I’ve put the buckets, so I’ll adjust that.
8:10 One of so many wonders of nature that when I make mush for the guinea pigs I can fill a bit of mush up with water and the water disappears. Yeah, I know, it displaces air and diffuses on a cellular and praps even atomic level, but it’s still a miracle to me.
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain ().) See above 1) for the “stopping walking” co-ordination & balance problem.
Simplified:
I could pile more deadwood under the rhododendrons for wildlife, maybe with paths between
Not using the rain for toilet water until all 100 buckets are full, except the veranda roof buckets cos that may have some asbestos (doubt it).
I can sort my bird notes into the various species whilst typing them instead of afterwards
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