2024-06-28 Friday
Summary:
- LDN Jun 20th- 1.5mg
for Energy ’30%’ , partly usable = 13% (
), energy profile ‚very slow’ to ‚slow‘ , TT 2:0 (), jackknives , walking / cycling 25’ (). - Triggers: Doc appts. May 29th: 9 days , Jun 7th ?d , Jun 10th , Jun 26th - went well , but all too much, not recovered. 5 bites, but OK .
- Last focal seizure: Jun 20th (+15d). Prevented a block from quinoa/sweet potato by stopping and then drinking.
- Sleep: Screen curfew 20:10, but later some more (), late bed cos of: guinea pigs, blog ‚‘. QCS at 10:00. Airing: 6h .
- Thoughts: Good to get an independent schedule now my wife’s not home 2 days.
- Feelings: -
- Cheer: Appreciating the many little things… Brilliant bird bathing scene at 15:00. Decided upon a camera & lens and narrowed down supplier.
Pic(k)s of the Day
= expanding happiness
Many repetitions today… including one my wife thinks is brilliant … quite a few new ones… some sorta-funnies 10 plants, 3 animals, 1 bird, loads of insects…
Plants:
Red roses again, more groups at last:
Grasses standing out - “sparkling” came to my mind - in the sun again:
Evening primrose blossoms again:
New: Oleander blossoms budding:
I can now show the prickles well which give the China lettuce the name compass plant and its German name prickle lettuce:
St. John’s Wort again:
“Autumn joy” this is called in English, didn’t realise, then let’s see what comes of these buds coming up:
Suneye/oxeye flower shining again, I like the irregularity of this one:
Devil’s paintbrush (‘Orange-red hawkweed’) again, these blossoms will be gone so quick and such a group, before I thought it was only going to be a single one:
My hydrangea/hortensia I’ve now looked in to – no real flowers to be seen, with anthers or stamen! So … this (and my other 3 sorts) are absolutely useless, and even harmful for insects (cos attracting/distracting them), so I’ll not be cutting the ivy back from it:
Animals:
Putting out grass for the guinea pigs in my room into an upside down ‘house’ to try to keep the mess down – why not go directly into it?:
How come the sunflower seeds in the shed are getting less, and there are bits of plaster inside the plastic bag? So … the mice are going into it thru the hole I’ve left at the bottom, so they don’t put in a new hole, then up thru them, dragging the plaster in a futile attempt to “hide” them, and taking seeds to eat out of the bucket – where?
Ahhhhh, here!
Birds:
One of our woodpigeon pair was already in the feeding box, the other wanted to come together, that made a really nice view of the wings spread:
Insects
A cabbage white, a silly name in German and English, cos it doesn’t feed on cabbage at all… - this is my first try at doing better collages:
Cader-bee again:
Great banded furrow-bee on fiddleneck:
Great banded furrow-bee with something else on celandine:
This is the one I caught ‘by mistake’, only saw it on the photo above, and it’s not enough to be ID:
Had a leaf-cutting bee before, but my wife thinks this photo is brilliant, asked if I did it:
Probably a ‘narcissus hover fly’, Germans call the Merodon equestris, brilliantly evoking a red-tailed bumblebee, had to put it in, even tho blurry:
Couldn’t find out what this moth is yet:
A harvestman again, this one new to me:
Quiver spider is the nicer German name for cellar spider, even a dead spider glows in God’s sun:
LDN: 3mg/3.5mg since Feb was no help, so: Jun 20th- 1.5mg: Brilliant sleep, subjectively lighter body, easier movements, but can't use the felt energy, radius same. 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. Jun 19th 3mg. Jun 20th- 1.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 10' ➔ 80%/4 ❌, music 10' ➔ 80%/4 (no nausea, but strain, depending on type of music) (❌), white lips 70-80% (❌), TT 2:0, cos talking less (moving 15%, talking 10%, counting 20%) (✅), moving ➔ 80%/3-4 (✅), balance (✅), body fog (❌), jackknives ✅, SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 87% ❌ and sleep 7h53 ✅ (Airing: (?)8h ✅. QCS: (?)10:00 ✅, '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): 7h53, all deep ✅, QCS at ?10:00 QCS = very quick very cold shower (22 issues under control).
Sleep 23:45-7:58 4+7+4+4’, 0 deep doze. Sum: h+h-(x5’=)19’ =8h12-19’ = 7h53.
23:45-
1:50 1st, air, no plugs,
3:48 7’ 2nd cooing? Sky’s light, street lights still off. But 0 blackbirds or robins. Only 3 pairs of socks, cos downstairs, so bit cold, and long johns on, robin 3:51
5:42 1h50 tape, and probably nothing to here. Past nights nostrils stuffy. Tonight dry throat only partly. But cold from too few socks. In bed overheated.
6:56 4th GABA/break
-7:58
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 ✅. 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: Trying for higher disability from Apr 25th on, cardio (Jun 26th) has helped immediately, let's see when allergist comes and when I'll be able to manage a GP appt. Click for latest (Jun 22nd) details.)
DISABILITY: (May 29th) Allergist helpful (Jun 7th) sleep lab psychiatrist not helpful, trying follow-up per mail. 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 for more than a year.
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 (✅)): Prevented a block from quinoa/sweet potato by stopping as soon as I felt some pressure, waiting till it felt fairly free, and then drinking a few big gulps, not sure if that'll always help, but in this situation it was perfect. 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:
- Annoying that something big I’d sold wasn’t taken. But only took today to get it out of my system.
- cos wife not home guinea pigs took 1/2h longer I guess, but at least I’d been outdoors again and I’ve decided on the camera, that’ll please my wife.
Reasons to be cheerful:
a)-d) Plant, bird & animal life: Decided upon a camera & lens and narrowed down supplier.
a) Plants: (Newest blossoms) Oleander is new, loads of good pics.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Blackbirds, with the 4 juveniles, subsong, only short bursts of full song Robins only short bursts, starting 3:30 Sparrows Blackcap only at TT. Swifts 30x , Magpies Jacks , bathing 30x/d ), Crow (compared and confirmed, but then different calls, even higher, that’s confusing again (22:05) , Great Tits (nesting box) & BlueTits , Collared dove .
Latest / earliest robin song: …22:30/ <4:00…
(Regular cheer, song/calls/seen - Chaffinch sometimes and nearby , Chiffchaff sometimes and nearby, at TT , Wren song and family , Dunnocks 0, Nuthatches 0, Great Woodpeckers left mid-June 0, song thrushes 0)
Brilliant bird bathing scene at 15:00 - woodpigeon lying in a water bowl, juvenile blackbird touched, both got a fright, then back to water bowl and sun-bathing, blackbird bathing in aqua-sandarium…
c) Animals: (guinea pig antics . Redbrown squirrel )
Bats Bank vole(s) . Insects: bees, flies, spiders, butterflies & bugs . Snails & slugs .
e) Human life: (TT Skip-Bo Wife Art: my paintings Music listening () Nice talks ())
f) Environment: (outdoors/fresh air .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body . Brain .) Very foggy, scraped my forearm from something. Things almost falling jolted me, I walk funny and I talk funny (ponderously).
Simplified: Grass up for the guinea pigs in the mornings that I’ve cut in the evenings, so it stays fresh outdoors, insects can move out of it and it doesn’t dry from the sun.
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