2024-06-26 Wednesday
Summary:
- LDN Jun 20th- 1.5mg Jun 19th 3mg. May 20th-Jun 18th. 3.5mg (Mar 21st- 3mg)
for Energy ’30%’ , partly usable = 13% (
), energy profile ‚very slow’ to ‚slow‘ , TT imp., jackknives (), walking / cycling 15’ . - Triggers: Doc appts. May 29th: 9 days , Jun 7th ?d , Jun 10th , Jun 26th - went well, but all just too much, not recovered from the ones before yeet. 5 bites, but OK .
- Last focal seizure: Jun 20th (+15d). So 6d now.
- Sleep : Screen curfew 20:00 (), another 30’+ later tho (), late bed cos of: guinea pigs etc. ‚‘. QCS at 8:00 . Airing: 8h . Too short, cos of breaks and doc appt. early. Need to pull forward or at least be more disciplined.
- Docs: Cardio quick and helpful for reporting fatigue. Sleep lab mailed asking me to phone, but I can’t.
- Thoughts: -
- Feelings: Slow. Late. Confused: got something sold (Friday it turned out not), looking for a big tripod and phone adapter, trying to catch up with blog. Missing the garden cos of feeding the littl’un so long. After screen curfew 20:00, later felt I needed to get something done, reduce tabs and mails, which felt good. I’m behind with “feeling good”, vicious circle.
- Cheer: Appreciating the many little things.
Pic(k)s of the Day
= expanding happiness
Codlins and cream, what a cute name for the hairy, hoary, or small-flower(ed) willowherb. Reminds me of the duo Godley & Creme. Codlins means cooked apples:
And staying in front of the house I saw that the small grass there is flowering too, this is annual bluegrass / meadow grass - oh, I love bluegrass music, back to the country, back to the roots:
This compass plant / China lettuce up front is now budding…:
And back of house the broad-leaved is one “common” one good for insects I’ve wanted to encourage and see blossoming, but one the way there some fungus has turned the oldest leaves to beautiful colours for a few days. Good for skin (I remember that from kid times) and diarrhea, but oxalates and bitterness make it difficult to eat:
This might be a carpenter bee, rather than a fly, gotta try and get better pics, 8 weren’t enough:
Again honeybee on fiddleneck:
Again suneye/oxeye close-up:
Again marmalade fly on rough hawksbeard flowers:
One of my last mysteries was a very black feather, and I found one like this in a park nearby under where the jacks overnight, so I’m sure it was a black jack feather. 
But these black round things (0.5mm granules) are a new black mystery I’ve probably wrongly associated with the devil’s coach horse beetle a week back…:
LDN: 3mg since Feb hasn't helped, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy, radius same. Side effects from reduction only 1 day and a little on others. Jun 19th 3mg. May 20th-Jun 18th 3.5mg, click for effects/dosage (not under 4 Supps)
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: (Slowly up from Oct 1st ~0.07mg). 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-Mar 5th 1.5+0.75=2.25mg - ‚better than 3mg‘. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st-May 19th 3mg. May 20th-Jun 18th 3.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 10' ➔ 80%/4 (❌), music 15' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT imp., moving ➔ 80%/4 (✅), balance (✅), body fog (❌), jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87% ❌ and sleep 6h46 ❌ (Airing: 8h ✅. QCS: 8:00 ✅, 'PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', with ‚8h rest‘, 4h very slow, 4h 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): 6h46, 10' deep doze ✅, QCS at 8:00 QCS = very quick very cold shower (22 issues under control).
Sleep 23:35-7:36 30+20+25’, 10’ of that deep doze. Sum: h25+7h36-(x5’=)1h15 = 8h01-1h15 = 6h46.
23:35 after back, cocked up supps, A2 now
1:15 30’ A3 – risky cos amino acids, so drank quite a bit. Q6 turned out 30’.
2:05 20’ doze trying to go to sleep for 20’, but can’t, probably cos of screen time, so NSDR
3:26 25’ awake again, so QCS. Robin 3 short bursts, once every 5’!! And that’s despite street lights being off. 2 of 3 windows closed, plugs in. T-shirt, no trousers, 3 of 5 pairs of socks. Several bites, but only slightly troubling, with oils OK. NSDR again, but only short.
7:26, doze till -7:36 did wake up without getting up. Again GABA-problem, have to take more in the daytime and watch seizures and bladder pain. 1 window open, plugs in, 0 trousers, 0 long sleeves, 3 of 5 socks.
2) Watching TRIGGERS, esp. of exhaustibility. Strain: (May 29th) doc appt. (9d) ❌, (Jun 7th) Bad 20-25' sleep lab psychiatrist appt, from Jun 8th on ❌. (Jun 10th) Too long 55' public health officer appt., immediately: ❌❌❌. Dentist's local anaesthesia on Feb 15th flared till Apr 28th ❌, next I'll need 3 tiny fillings, definitely without anaesthetic. Histamine foods: 20g goat/cow cheese (✅). Bites OK ✅ - several, but only slightly troubling, with oils OK. 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).
(May 29th) Good 20-25’ allergist appt., fairly recovered Jun 7th (9d) ,
(Jun 7th) Bad 20-25’ sleep lab psychiatrist appt, first , from Jun 8th on .
(Jun 10th) Too long 55’ public health officer appt., immediately: .
(3) DOCS: Cardio successful - for report fatigue too: Cardio immediately gave me a report confirming severe fatigue for longer than a year, something needs to be done too. And she understood that talking is difficult, said yeah, we'll do it non-verbally. When she gave me a report saying 'severe fatigue syndrome', she asked if that were OK, I added: 'for more than a year', and she complied with that too.Other doc’s office asked me to phone. My wife suggests to tell them I can’t phone, to please mail an answer. Trying for higher disability from Apr 25th on. But (Jun 20th): Are the 7+ day-flares after appts. worth it?! Click for latest (Jun 22nd) details.)
DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful. (Jun 10th appt.) with public health officer for retirement too long, so postponing GP & dentist. (Jun 26th) Cardio went well, short, short report adding fatigue syndrome.
GP (Apr 25th): Just update (cancer and bp OK), and asking about possible help with sick notes and disability.
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, incl. med effects: Jun 22nd: Palpitations down, HR back to 65. Jun 7th: Watching palpitations (regularly lately) / HR 40 (new discovery Jun 7th). Click for latest (Jun 7th) & next changes, and details...)
(Jun 7th) Watching palpitations / HR 40 = bradycardia.
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 (✅)): Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Jun ~10th creatine down to 1x2mg (see tub). Creatine monohydrate Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN - malate form next? Last seizure Jun 20th (1) (+15d ✅). Last esophagus block May 7th ✅: 7 months without ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jun 22nd) & next changes...
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 focal SEIZURES: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14 / 10 / 11 / 8 / 6 / 9 / 15 (Jun 20th 2024). Stress, histamine & less GABA. JUN 20th (+15d) (23:19 rabbit hole) Jun 5th (2x, +9d) (9:54 rabbit hole, 17:52 TT, < GABA). MAY (4x): 27th (+6d) 21st (+8d, after TT, < GABA) & 13th (+11d: < sleep) 2nd (+10d: TT), APR (3x): 22nd (2x: after TT), 8th (4x: errands, eating, TT, kids on 7th) 2nd (TT) MAR (3x): 28th (TT) 20th (TT) 2nd. FEB (3x): 19th, 14th, 3rd. JAN24 (1x): 1st (3x) DEC23 (2-3x): ~22nd (2x, slight) 2nd & 3rd (15’ of concert & GABA; TT & GABA) NOV (3x): 20th (food fell off spoon) 13th (wind noise) 5th (slight, after TT & GABA) OCT (2x): 27th (ex-flat mate, but 2x seizure-ish 26th), 18th/19th (3x, busy street, emotional music). SEP (1x): 19th? AUG (2x): 9th, vertigo day: (2x, 13:42 & 15:40). 1st: 4-5x seizure-ish. JULY (2x): 25th seizure-ish 3-4x. 17th (2x, thunderstorm). 9th TT. July 7th seizure-ish 4x. JUN (3x): 23rd (4): 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, confused night, sleep meds too late etc. & 16th 20:05, 6th 2x. MAY (3x): 25th 2x, histamine & GABA, 14th. 13th (stress? GABA). APR (2x): Apr 16th 15th (GABA late, cold type symptoms = histamine), MAR (1x): 31st 19:00 (GABA, meeting), FEB 0x. JAN (3x): 15th pee urge 14th ?GABA 5th (scolded). DEC22 11th. NOV22 21st 2x.
Last esophagus BLOCKS: Jun 25th & 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 if slightest pressure, 0224-06-22: better acid / gut.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, re-ordering silymarin Jun 24th. Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning). 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). LDN see separately. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd 2023.)
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: Re-order silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids), see research Jun 22nd. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal, next praps as malate. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th 2024: 29 supps + LDN cost ?400€/m (was 395€/m) +20€/m cps. 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. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans, retried, but hardly useful. No/hardly B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now (till when?), LDN see separately. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. 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:
- Slow. Late. Confused. Got something sold, looking for a big tripod and phone adapter, trying to catch up with blog. Missing the garden cos of feeding the littl’un so long.
- I’m behind with “feeling good”.
- Doc appt. was so early that I didn’t eat properly, 1st meal at 11:00, 2nd at 16:00, 3rd at 21:00.
- Managed shop very slowly, guy at check-out of my shop wished me well, I said: yeah, not in good spot, he said: yeah, I know, that’s why I’m not talking to you, to not drain more energy. Great guy.
- Screen curfew 20:00, but later felt I needed to get something done, reduce tabs and mails, which felt good: After feeding guinea pig altho listening to great music (which was fairly OK). Reduced tabs and mails in my work inbox from 31 to 7 and business inbox from 140 to 75. Which is good, but wrong time of the day.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) Nothing new.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Blackbirds, with the 4 juveniles, subsong, only short bursts of full song, like 19:44 Robins only short bursts, starting 3:30 Sparrows Blackcap Swifts 30x , Magpies Jacks , bathing 20x/d ), Crow - not raven, Great Tits (nesting box) & BlueTits , Collared dove .
Latest / earliest robin song: …22:40/ <4:00…
(Regular cheer, song/calls/seen - Chaffinch sometimes and nearby , Chiffchaff sometimes and nearby , Wren song and family , Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June 0, song thrushes 0)
19:23 Nice squeak chattery sounds, maybe the juvenile blackbirds, made sure just to tape, not interrupt by looking. Unusually intense.
Much less blackbirds in the morning, not woken by one despite open window.
3:26 Robin 3 short bursts, once every 5’!! And that’s despite street lights being off.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bats () Bank vole(s) (). Insects: bees, flies, spiders, butterflies & bugs . Snails & slugs .
e) Human life: (TT imp… Skip-Bo Wife Art: my paintings Music listening () Nice talks () Kids? Friends? Family? )
f) Environment: (outdoors/fresh air .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain ().) On the verge of . Thinking, feeling, but mono, lots is too much.
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