2024-06-04 Tuesday
Summary:
- LDN May 20th- 3.5mg (Mar 21st- 3mg)
for Energy “30%” , partly usable = 20% (
), energy profile “slow”, TT n/a, jackknives , walking / cycling 20’ (). - Triggers: Allergist appt. on 29th. Bites better ()
- Small issues at night: Mouth dry, Traumeel on sore thumb nail, Stomach ache again, Sleeping longer cos I’m deliberately keeping overheated.
- Self-care: 2h work mail was OK, esp. as it’s the last ones now. Guinea pig still 1h per stint, 3xd.
- QCS after getting up .
- Thoughts:
- Feelings:
- Cheer: Now added swift pics on Monday’s entry, incl. when one flew directly at me in my window. Blackbird young one! Evening walk 1km, keeping under limits: ducklings & moorhen pair & fungus at lake.
Pic(k)s of the Day
Now looking in the same direction as “the pretty maids”, towards the front
Poppies in company, maybe less than last year, cos of letting everything else grow wild:
Grass may seem so slight, but to me it’s a sensual experience seeing how long and wild it’s grown:
Hydrangea / hortensia flowers budding - I think I like them better now than later, let’s see:
Rose campion: wham! And in true life the colour is a deeper neon violet:
“If I look into the corner maybe he won’t find me”
Found ya, littl’un!
Hmm, yummy washing powder water? Better put you back somewhere healther:
Pink bush roses on the streets around our house, not correct colour tho…
Big fat fungus wedge on tree, someone stuck a feather and a stick in it:
Just some weeping willows. But sinking into bits of anything intensely makes anything special:
Big stinging nettle: how many types of green?
These orange feet flashed at me over 20m, had to get closer:
Not a stinging nettle, a white dead nettle or white archangel blossoming:
*And another tree:"
A crisped / curly thistle caught our attention, growing inside of pond railings:
The clouds did too:
And my wife pointed out she loves these orange roses on the street around the corner:
Just believe me, this is a snip of the robin girl jumping up for an insect…:
People of colour: white mother duck:
*White mum needs more of a break from swimming than her 3 littl’uns"
7 ducklings - we’d expected 8 from this mum, but later saw 1 was alone in the connected pond… The contrast of the brown ducks “in” the white reflection of the sky…
Ducklings warmly coloured by evening sun, not sure if it comes across:
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).
1) MAIN ISSUES: talking 10' ➔ 80%/3 ❌, music 5' ➔ 80%/3 (no nausea, strain less) ❌, white lips 70-80% (❌), TT n/a, moving ➔ 80%/4 (❌), balance (8h25), body fog (❌), jackknives ✅, SO post exertional malaise ❌, "post postural ache", "PPA" (❌), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "80%" (❌) and sleep 8h25 ✅ (vQvCS: morning ✅, "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): 8h25, all deep ✅, QCS morning 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 23:05-7:55 5x5’, 0 deep doze. Sum: h55+7h55-(5x5’=)25’ = 8h50-25’ = 8h25.
23:05 after back exercises
0:15 5’
2:34 5’ (or praps 1:34?)
2:50 5’ dry mouth gel
2:52 rained a bit, less lights on in the street than usual recently, not bad.
4:59 5’ Traumeel on thumb nail, dry mouth gel
6:13 street blackbird sang me awake. Almond milk for dry mouth, pills thru, no QCS nec.
6:14 stomach ache – is that from the dry mouth gel or from the veggies Monday?
7:55 up, I think I’m sleeping long cos I’m keeping warm and overheated, hope that’s better. Now switch oe of the warm duvets for a colder one.
2) Watching TRIGGERS, esp. of exhaustibility. Allergist appt. on 29th. Bites (❌❌). 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: 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 (✅)): * Small issues at night: Mouth dry, Traumeel on sore thumb nail, Stomach ache again, Sleeping longer cos I’m deliberately keeping overheated. Resumee Jun 2nd of Creatine monohydrate Apr 9th- 2x5g for more (slow) energy has had a small positive effect, but less than the LDN. Might be trying creatine malate next. Last seizure May 27th (1) (1): 6 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 27th (1) 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 / 6, 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 27th (1) 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: 90%
Lessons in self-care:
- 9:45 Guinea pig is taking 3h/d on average
- 11:28 2h mails for work, the last things that need doing, passing the baton.
- 20:01 kept under the limits all the time on the evening walk.
- 22:58 played skip-bo till 22:00, guinea pig for 30’, after that sorting his stuff, so then again far more than 1h for him.
- 22:58 washing hair in the evening didn’t take too long or too much energy.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
- 14:47 deadheading the Alba fairy bellflowers I was surprised the juice is white too, and sticky like organic glue.
- 20:01 Pics of interesting big fungus on a tree at the smaller lake.
- 20:01 Pity the pink bush roses don’t come out right on the pics, try at dusk.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbirds Sparrows (Nuthatches 0) Magpies Dunnocks Great&BlueTits Jacks on the increase (from immigrated ones) Chaffinch (Chiffchaff at lake) Collared dove Blackcap Swifts 18x Birds bathing 4x ) Latest / earliest robin song: …22:35 / ?4:00…
(Regular cheer, song/calls/seen: Greenfinch? Wren? Bullfinch? Treecreeper? Great Woodpecker? Green woodpecker? Raven(s)? Crow(s)? Song thrush? Above: Ducks? Heron? Peregrine(s)? Grey goose?)
- Now added swift pics on Monday’s entry, incl. when one flew directly at me in my window.
- 12:25 taped bird similar to blackcap, probably was.
- 13:36 house sparrow chirping in the garden, that’s rare, they live on the street side
- 14:48 baby blackbird! I think our male nearby. First breeding success after the 3 GreatTits.
- 14:48 blackcap, GreatTits…
- 14:53 standing near the nest looking up, saw magpie running past, so praps still good for the pigeons that I’m nearby anyway.
- 16:40 robin female close again.
- 16:40 swifts louder again, cos sunny and warm, so insects are out.
- 16:59 blackcap, great woodpecker, woodpigeons not shy
- 20:01 ducklings at nearer lake
- 22:35 was the last time I heard a short robin phrase
- 22:58 taped blackbird and robin evensong again for 1h.
- 0:15 and 2:52 amazing how the moorhen’s nest in the nearer lake is built up about at least 60cm high, 40cm above the water, sitting patiently.
- 7:55 dunnock loud as ever
c) Animals: (guinea pig antics . Redbrown squirrel 0)
Bats Bank voles 0. Insects: bees, bugs
- 9:48 this morning was maximum weight he’s had in the mornings for many months, and accordingly the night before he’d bust the next 100g, so eaten 50g the last meal yesterday, eating grass by himself a lot, not feeding quite as much now.
- 12:43 2 bumblebees in the celandines
- 14:47 heard squirrel squawking, feared they were annoying the woodpigeon, so went there quick just in case, but was embarrassed it was 2 playing squirrels who ran away.
- 15:13 the Spanish slug which I put 5-6m into the garden has come back into the cellar and is hiding in the corner of the cellar entrance, seems able to get under the door… 16:36 made me laugh again, again in that corner, pretty sure it’s the same one, read they like going to the place they came from if displaced, now it was on its way to get something to drink from the washing machine water rest, so now put it at the other end of the garden, 20m, let’s see when she comes back!
- 16:40 reading up how ants live symbiotically with aphids, how they build & heat nests. Different kinds of ants, I do have yellow ones at the back of the garden, didn’t realise that’s a different type, lasius flavus, yellow path / meadow ant.
e) Human life: (TT n/a. Skip-Bo Wife Art Music listening Nice talks )
20:01 nice evening walk 1km together, after bringing a bust bike to a neighbour for repair.
f) Environment: (Outdoors .) Rain 0.
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain ().)
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