JayCS’s Fibro Blog

[JayCS]

2024-07-04 Thursday

Summary:

• LDN still slightly better . Jun 20th- 1.5mg for Energy ’30%’ , partly usable = 13% (), energy profile ‘very slow’ to ‘slow’ , TT 2:0 and kids. (/), jackknives (), walking / cycling 20’ ().
• Triggers: Doc appts. May 29th: 9 days , Jun 7th ?d , Jun 10th , Jun 26th - went well , but all too much, not recovered. Bite improving ().
• Last focal seizure: Jun 29th (2) (+9d ).
• Sleep (): Screen curfew late , late bed cos of: blog (insects), feeding '‘. QCS at 10:00 .
• Fresh air: 21h .
• Thoughts: Monday’s dream is making me cut off certain things I wanted to try.
• Feelings: -
• Cheer: Appreciating the many little things… New bumblebee, black with white tail – turned out on Sunday to be a tree bumblebee. And a beautiful spider I can’t identify that looks like a baseball…

Pic(k)s of the Day

= expanding happiness

Working with the grid command most of the time today. Easy: Just [grid] and with / before the grid.

But starting with the unspectacular, to me just as meaningful:

These are 3 things, moss and grass which is growing in the gaps between the concrete, something that last year didn’t look successful, but it’s getting there.
This is a new one, crescent-cup liverwort, a neophyte, but at least not invasive, and interesting:

These are ‘normal’ grasses, I just like the way they’re growing:

Unspectacular in that it’s ‘only’ a Western honeybee, but I got some nice results, and I haven’t posted one on the new oregano blossoms:

And this is the pretty behind of a spherical spider, the laptop ID is pointing me to wrong directions, nearest so far is a (wandering) crab spider:

Here the compass lettuce fell down cos of wind and it is after all growing in 2m height in a small gap in the pavement, so I quickly propped it with some long sticks from the deadwood insect palace and am hoping the tip of it will like many plants manage to keep blossoming (spoiler: it will):

Blurry maybe, but I’m all excited about this “new” bumblebee, pretty in black, so despite the white tail not a white-tailed bumblebee, it’s called a “new garden” or “tree bumblebee”.:

LDN: Still better. 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: 9:02 everything fine outside, but once I come in I’m panting and feel heavy. 14:15 slightly nauseous from being able to move better and pushing thru the pain. 16:00 still OK, TT 2:0, fairly recovered, surprised now well, meeting kids at 16:15. Managed to carry grandkid for 30’’ as a greeting, that’s always a highlight for both, then ‘play’ 90’, not talking much myself, mainly mimicry – hurting, nauseous, not so much fatigued, fairly nimble still. Fresh air all the time today, last night all night and most of the day, 21h. Talking 10' ➔ 80%/4 (❌), music 5-30', depending ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 2:0 (moving 15%, talking 15%, 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 7h35 ✅ ('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): 7h35, all deep ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:15-7:36 3+35+3+5’, 0 deep doze. Sum: h45+7h36-(x5’=)46’ = 8h21-46’ = 7h35.
23:15, late cos of insects and guinea pigs
0:20 3’
1:31-2:06 35’ unrest q7
4:00 3’ light, but 0 birds
5:31 taped, but aside from robin only a crow whilst getting up, blackbird very distant
-07:36 up

2) Watching TRIGGERS, esp. of exhaustibility. Jun 29th- 1 of 5 bites playing up (❌). 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 (✅). 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: .
(Jun 26th) Did go well , but all too much, not recovered beforehand, so stays .
(Jun 29th-Jul 3rd) 1 of 5 bites played up ().

(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 (✅)): 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 Last seizure Jun 29th (2) (+9d ✅). 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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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:
21:19 about the pillar dream I had on Monday, my wife suggested that the pillar was work or my condition, so praps I should put several things aside where people are messing with me and it’s too much effort to mess back.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

• Maybe my blossoms are smaller, but I know the insects aren’t being treacherously attracted, but they’re really getting their money’s worth. Still got lots to look if I’m close, not so much if I’m further away.
• 18:13 Coming back, compass plant had fallen down, so fastened it with sticks, the 30cm tip broken, hoping it’ll still be able to blossom, like often.

b) Birds:
Every day cheer, song/calls/seen: Woodpigeons Blackbird family less shy, quiet Robins short song Sparrows (quiet) Blackcap only at TT () Swifts 10x , Magpies Jacks , bathing 10x/d (rain) , Crow , Great Tits & BlueTits, incl. “black” ones , Collared dove .
Latest / earliest robin song: …22:30/ <4:00…
(Regular cheer, song/calls/seen - Chaffinch , Chiffchaff , Wren , Great Woodpecker (), song thrushes nearby (0), Dunnocks 0, Nuthatches 0.

• 8:24 crow flew, GreatTits in feeding bowl – is that OK? Pigeon hunched, found Blackie on the dawn chorus recording, blackbirds, singing: wren & chiffchaff.
• 8:26 magpies, jack, crow cawed. 8:33 magpie on chimney next door, robin scolding a bit.
• 11:26 GreatTit family.
• 16:10 chiffchaff singing in cherry
• 16:22 chaffinch singing next to shops
• 18:45 saw chaffinch and baby robin when we were at the shops.
• 19:07 high chirp since a few days, couldn’t find out, edit Sunday: found out it’s a chiffchaff call, by seeing him.
• 22:32 swifts, maybe back after rain?
• wife shared: Saw 2 woodpigeon babies in garden.

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats () Bank vole(s) (). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .

• 12:24 is that a wood bumblebee? Sunday: No, a tree bumblebee. The app thought a stone bumblebee, but then it’d have a red tail.
• 13:53 guinea pig rumbled at me when I started giving him something to eat, a sign of joyful greeting to his partner (who doesn’t usually reply loudly). Such a cheerful little chap, he really knows how to enjoy the life I’m giving him by feeding him.
• 16:05 at last I’ve seen it really is squirrel scratching away in the cornel cherry – took pics, but didn’t work.

e) Human life: (TT laughter Skip-Bo Wife Music ())
f) Environment: (outdoors/fresh air .)
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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-05 Friday

Summary:

• LDN Jun 20th- 1.5mg for Energy ’30%’ , partly usable = 14% (), energy profile ‘very slow’ to ‘slow’ , TT 2:1, easy, let win (/), jackknives (), walking / cycling 20’ (). Since Wedn evening (increasing creatine and praps recovering from the last appts) I’m better, more slow than very slow, pushing thru with less pain even tho I didn’t sleep 8h. Bed still too late, but working at it.
• Triggers: Flare May 29th-July 3rd from strain of 4 doc appts, Jun 7th and 10th worst. 23:05 Fairly loose stools, like potatoes, the only unusual thing I ate today.
• Last focal seizure Jun 29th (2) (+9d ).
• Sleep: Screen curfew late , late bed cos of: blog, pigs '‘. QCS at 10:00 .
• Fresh air: 20h .
• Thought 1: my kid reminded me that these are flares, and that’s dfferent to the ALS of a relative.
• Thought 2: These pics are therapy / treatments, underlining what Merl @ModSupport replied above that this still still belongs in the subforum “symptoms and treatments”.
• Self-care: Yes, I am doing a helluva lot, even tho it doesn’t feel enough
• Feelings: -
• Cheer: Appreciating the many little things… There’s now 3 young woodpigeons, goldfinch regularly outside shop, robin very close, 2 peregrines around tower nearby.

Pic(k)s of the Day

= expanding happiness
Words for these pics less necessary today…

I’m realising more and more why these are nicknamed devil’s paintbrush: hellfire colours!

These are the hydrangeas that have real flowers in the middle, saw them on a cycle walk:

The snowy flies on this celandine are on the top of the leaves: Cos the stem had broken and they’d turned over…:

What a sweet little spider, in German ‘wooley wall jumping spider’:

LDN: After July 3th recovering from the 4 doc appts, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. 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 - bit better since Wednesday 3rd 18:00: talking 10' ➔ 80%/3-4 (❌), music 5-30', depending ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-80% (❌), TT 2:1, easy, let win (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 8h09 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts July 3rd with '7h rest‘, 3h very slow, 6h 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): 8h09, all except 10' deep ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep :-: x5’, 0 deep doze. Sum: h45+8h12-(30+3+6+4+5=)48’ = 8h57-48’ = 8h09.
23:15 bed after A3 & back ex
0:56 q6 30’
3:18 2nd
4:08 3rd, few robin bursts, 4:12 burning tongue all night, right back, 3 robins, blackbird in distance, think I’ll tape
5:36 4th
8:00 5’ should sleep another half hour, try
-8:12 2nd time, and now gut filling up, tick bite area itching again a little bit.

2) Watching TRIGGERS, esp. of exhaustibility. 23:05 Fairly loose stools, like potatoes, the only unusual thing I ate today. Flare May 29th-July 3rd from strain of 4 doc appts, Jun 7th and 10th worst. 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 (✅). 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), so have given them up.
(May 29th-July 3rd) doc appts. May 29th , Jun 7th , 10th & 28th ()
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): 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 Last seizure Jun 29th (2) (+9d ✅). 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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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:

‘Research’ today (that’s Mondaym 8th…)
After realising that creatine seems to be helping and reading that Chris Masterjohn recommends many people that need energy, esp. vegetarians, to take 3-5g of it per day, as creapure, I’m re-ordering it. Turns out that only creapure, made in Germany, can guarantee purity, all others, made in Asia, may only contain 1/3 creatine. Also found out that creatine malate which I’d read can be a good alternative, isn’t allowed yet in the EU, so I will not be switching.

Quality of life: 90%

Lessons in self-care:

• Better look it in the eye that I’m spending 4-5h for guinea pigs, of that 2h for myself, and 3-4h on blog, plus a few rabbit holes. Part of me wants to do nothing, just look. But that’s just cos I get so carried away with insect identifying and feeding, still fighting for the balance.
• 17:26 a 2nd dead young blackbird, stopped myself feeling responsible, just let it go.
• Praps I can simplify the blog more?
• Difficulty regulating heat today, overheating, air warmer than the lack of sun would suggest, praps that’s why the birds aren’t moving much today.
• 23:05 wife procrastinating, so I sorted out the right camera, asking & searching online, guinea pigs, pic identifying, haven’t showered today, not sure when to – decide only if unrest at night.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) -

b) Birds:
Every day cheer, song/calls/seen: Woodpigeons Blackbird family less shy, quiet Robins short song Sparrows (quiet) Blackcap only at TT () Swifts 20x , Magpies Jacks , bathing 10x/d (rain) , Crow , Great Tits & BlueTits, incl. “black” ones , Collared dove .
Latest / earliest robin song: …22:15/ <4:00…
(Regular cheer, song/calls/seen - Chaffinch , Chiffchaff , Wren , Great Woodpeckers (), song thrushes nearby (), Dunnocks 0, Nuthatches 0.

• 8:30 wife saw: 2 woodpigeon babies, I’ve now heard on the nest that a woodpigeon is nest-calling on the old nest. 12:12 Young Woodpigeon above me in the cherry. 12:24 tucking in his head, like sleeping, a feather-ball above me, like when sat on the nest. Short look when a young blackbird came past nervously, but then back, 20’ at least. 13:16 begging again, with wings flurrying, squealing. 13:25 wings, 2 young woodpigeons fed, parent, parent went cos of me moving, and left the 1+2 young ones.
• 10:05 robin loud in east park, few yards from home
• 11:35 Brilliant that the goldfinch that I got identified is in front of my local shop, so I can listen to it every time I go.
• 12:15 chiffchaff in between, but no chaffinch
• 14:00 very close female robin with white stripe on right wing and black spot under left eye whilst I was putting sunflower seeds in the feeding bucket on the balcony, 30cm, really, never been closer, 3x.
• 16:44 peregrines flirting at TT, blackcap & chaffinch short.

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats () Bank vole(s) (). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .

e) Human life: (TT laughter Skip-Bo Wife Music ())
f) Environment: (outdoors/fresh air .)
g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().)

Simplified: Grid function using the [grid][/grid]-command.

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-06 Saturday

Summary:

• LDN Jun 20th- 1.5mg for Energy ’30%’ , usabiity increasing = 14% (), energy profile from ‘very slow’ more to ‘slow’ /(), TT TT 2:1 fairly easy (/(), jackknives (), walking / cycling 20’ (). Was it upping creatine helping me from Wednesday on?
• Triggers: my stinging nettles don’t sting me, shop knackered me, an elderly woman in plight too. New pyjama top I suspect I won’t tolerate (Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst.)
• Last focal seizure: Jun 29th (2) (+9d ).
• Sleep: Screen curfew late , late bed cos of: blog, pigs '‘. QCS at 9:00 (left out yesterday, actually) .
• Fresh air: 21h .
• Thoughts: -
• Feelings: -
• Cheer: Appreciating the many little things… The black areas of the Great&BlueTits are from moulting, not parasites! Goldfinch!

Pic(k)s of the Day

= expanding happiness … so exciting again today, therapeutic for me as always…

Clouds, traveller’s joy, great vs. small-flowered willowherb, herb Bennet, paintbrush, buttercup, compass plant, leaf-cutting bee, daddy-long-legs. (Reduced the ~100 pics/films to only 73… and of that only 14 pics selected):

I’m thinking of posting clouds first every day, cos it’s where I try to look first thing every morning, and it’s kind of a pre-condition of the day, even tho for me there’s no such thing as bad weather:

Graybeard? Old man’s beard? Nah, maybe from a distance when the flower spheres have developed. Traveller’s joy, yeah that’s the name. I’m so happy I’ve let this grow all over the garden, and not just the 2 sprays up in cherry and cornel cherry, so far up I can hardly see it:

*Now this is today’s biggest surprise for me, didn’t see it coming. Cos as all the many other willowherbs back and front are the small-flowered ones I thought this would be too. But instead it has “enormous” flowers. And then up came the fear it’s the invasive sort, the American/fringed/northern/purple-leaved willowherb… Esp. cos the flowers are so big. But nope, it’s kosher, yipppeee! In German it’s called ‘hairy’, haven’t looked why yet. In English kaporie tea, great willowherb (yeah, great it is, compared, see the small-flowered ones below), fiddlegrass and… codlins and cream. Wait, had that before, it’s a name given to the small-flowered ones too, just cos of this mixture of pink and cream in the blossoms. So what now, great codlins and cream, and small codlins and cream? Haven’t decided yet. But good to compare, so first 2 of the great and then 2 of the small flowered ones.

*I still keep forgetting what this newer one is called, but the fruiting head (a bit like that of buttercups) might help me at least recognise it. In English colewort or herb Bennet (St. Benedic’ts herb).

Repeating those hellish paintbrushes with devilish glee:

Have I overlooked the buttercups recently? Cos they’re sposed to blossom till August. Creeping buttercup, or creeping crowfoot, in German creeping cock’s foot:

Ah, the compass plant is doing its best to stand up against all adversity:

I thought it might be one of the flies (drone fly) mimicking a bee first, but no, now I think this is the leaf-cutter bee again, snuggling itself into the rough hawksbeard, so I couldn’t see if the tail is ‘right’. There’s now 100s of rough hawksbeard blossoms in the grass front and back and they’re attracting all kinds of butterflies and bees:

Had this harvestman type before, a female, but this male is striking with it’s dark legs, yellow joints and reddish body:

LDN: After July 3th recovering from the 4 doc appts (talks), the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. 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 5-30', depending ➔ 80%/3-4 (❌), white lips 70-80% (❌), TT 2:1 fairly easy, despite wind, slightly seizure-ish in the 3rd game, mate hinted losing last game praps cos the side was dirty with egg rests (moving 15%, talking 15%, counting 20%) (✅), moving ➔ 80%/3-4 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 7h52 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 7h52, all deep ✅, QCS at 9:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:30-7:54 x5’, 0 deep doze. Sum: h30+7h54-(4+22+3+3’=)32’ = 8h24-32’ = 7h52.
23:30 both procrastinated, wife reading, me trying to find out why the Great&BlueTits have black areas (moulting, it turns out)
0:43 4’ outer sock pairs on
1:41-2:03 22’ brushed teeth, unrest, so hanging, longsleeve is new one to try, not organic, I’m wary if I tolerate it. 1:50 can’t get the discomfort out of my body, so QCS. QCS and teeth in almost completely darkness now the street lights are always off. Few slight balance problems.
3:27 3’ 0q6
5:13 3’ open, 0 plugs, jacks
7:54 up

2) Watching TRIGGERS, esp. of exhaustibility. 17:29 even when I stroke against stinging nettles I don’t feel any itch, even less a sting, my TT-mate suggested I need it, something to do with histamine praps? 17:23 Knackered by 10’ of a different nearby shop with my wife, nothing special, as little talking and moving as possible, can’t do anything, not even feed, which shows what a strain the other way round is, feeding first means I need a break first. Everything’s taking longer, increased brain fog caused by increased body fatigue. 19:12 Going home from the shop we came across an elderly woman who’d driven into roadworks and needed help to get out. I soon realised that this plight of hers and the situation was too much for me, so I quickly left after 1’, so stressed that I got a headache and feverishness. 1:41 longsleeve is new one to try, not organic, I’m wary if I tolerate it. 1:50 Few slight balance problems (in the dark).Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. 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 (✅). 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-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): At night and morning I read up Chris Masterjohn recommending 3-5g creatine (like I already posted), which might explain the slow energy 'jump' up from 13% to 14%... on Wednesday 18:00 after taking creatine at 15:00. 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 Last seizure Jun 29th (2) (+9d ✅). 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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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:
9:52 forum rabbit holes. Fun, but too much time.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

• Clematis blossoming
• Willowherbs in the middle of the pot area are turning out big-flowered, which is lovely, but I fear it’s the invasive form… nope… it’s not, yaaaay, a new one!

b) Birds:
Every day cheer, song/calls/seen: Woodpigeons Blackbird family less shy, quiet Robins short song Sparrows (quiet) Blackcap only at TT () Swifts 20x , Magpies Jacks , bathing 10x/d , Crow , Great Tits & BlueTits, incl. ‘black’ moulting ones , Collared dove .
Latest / earliest robin song: …22:30/ 4:00…
(Regular cheer, song/calls/seen - Chaffinch , Chiffchaff , Wren , Great Woodpeckers (), song thrushes nearby (), Dunnocks 0, Nuthatches 0.

• 8:26 chaffinch, few swifts, woodpigeon nest calls, call as if blackbird practicing, sparrows hardly audible.
• 19:12 goldfinch at the shops again.
• 23:30 found out the black areas of the Black&BlueTits I posted (fuzzy) are the black lower ends of the feathers showing as they’re moulting.

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats () Bank vole(s) (). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .
15:57 despite gale force winds, butterflies are fluttering, and flirting, cabbage white at least one pair and some orange one.
17:41 redbrown squirrel seems smaller, maybe a young one?

e) Human life: (TT? Skip-Bo Wife Music ())
f) Environment: (outdoors/fresh air .)
g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().)

Simplified: Grid function (…when it works).

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-07 Sunday

Summary:

• LDN Jun 20th- 1.5mg for Energy ’30%’ , usabiity increasing = 14% (), energy profile from ‘very slow’ more to ‘slow’ /(), TT 1:2 from tension (), jackknives (), walking / cycling 15’ ().
• Creatine 5mg.
• Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst.
• Last focal seizure: Jun 29th (2) (+9d ).
• Sleep: Screen curfew OK-ish - insects and ordered guinea pig stuff (), late bed cos of: blog, pigs '‘. QCS at 6:00 .
• Fresh air: 20h .
• Thoughts: -
• Feelings: -
• Cheer: Appreciating the many little things… Found out the cheep is chiffchaff’s call.
  Blaxie very near. More on moulting of the Great&BlueTits.

Cheer of the Week:
Birds: Discovering that the Great&BlueTits have been moulting, GreatTits are out on July 3rd, 3 young woodpigeons around, goldfinch nearby, peregrines “back”.
Plants: great willowherb, traveller’s joy & devil’s paintbrush blossoming, honesty seeding.
Animals: tree bumblebee, guinea pig gaining weight, Southern bush-cricket.

Pic(k)s of the Day

= expanding happiness
(14 of 85 pics + 3 vids)

Traveller’s joy again:

The horse mint that’s taken over that area from the suneyes/oxeyes is starting to blossom, looking forward to the more diverse insects it’ll attract:

A new whiter grass-veneer, the Latin name means pasture grass-veneer:

Hmm, this isn’t going to work, I don’t think?: Despite blurry pics, I’m trying to illustrate how this cader-bee catapults away backwards from a celandine blossom, 3x. Hmm… please use your imagination… (that sounds like school or summink, don’t it? )

This tiny red worm has made me think. I’ve been wondering whether to remove all the larvae from a tub at the back of the garden, and conventional wisdom says so, if I want to reduce my bites. But I only want to reduce insects that bite, and leave the others for themselves, others and birds, how do I know? Well this red larva was a challenge, as the laptop app couldn’t help. But it turns out “red larvae” are used to feed fish, and via that I slowly found these are larvae of the “red dancing fly”, or “non-biting midge” - so I should have saved them… Oh well, next time. The frayed end of the “blood worm” is the head end:

LDN: After July 3th recovering from the 4 doc appts (talks), the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. 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 5-30', depending ➔ 80%/3-4 (❌), white lips 70-80% (❌), TT 1:2 (at 15:32) despite feeling hungry cos before eating. Fun, laughter, lots of funny balls, my mate tells me interesting stuff without me having to say much. I lost cos of a basic tension that stole energy & precision (moving/talking/counting 15%) (✅), moving ➔ 80%/3-4 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 8h39 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 8h39, all deep ✅, QCS at 6:00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:45-7:55 5+4+4+4+14’, 0 deep doze. Sum: 1h15+7h55-(x5’=)31’ = 9h10-31’ = 8h39.
22:45- bed
0:24 5’
1:24 4’
2:43 4’ (unrest)
4:50 4’
6:03 14’ birds, overheated, wet from new longsleeve, so QCS. 6:13 eyes closed, slightly lost balance 5-6x, esp. after QCS. Drank, Bed, plugs.
7:55 (8:12) feeling yucky again from longsleeve

2) Watching TRIGGERS, esp. of exhaustibility. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. 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 (✅). 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-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): 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 Last seizure Jun 29th (2) (+9d ✅). 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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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:

• Trying the new flannel longsleeve night top again didn’t work out.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

b) Birds:
Every day cheer, song/calls/seen: Woodpigeons Blackbird young ones less, parents quiet Robins short song Sparrows (quiet) Blackcap only at TT () Swifts 20x , Magpies Jacks , bathing 10x/d , Crow , Great Tits & BlueTits, incl. moulting ones , Collared dove .
Latest / earliest robin song: …22:30/ <4:00…
(Regular cheer, song/calls/seen - Chaffinch , Chiffchaff , Wren , Great Woodpecker , song thrushes nearby 0, Dunnocks 0, Nuthatches 0.

• 8:26 a Blaxie passed me, but came back, even 1m away, me making sure she doesn’t feel looked at.
• 10:22 Great Woodpecker call
• 10:22 but also a similar call, recorded 10:59, 11:03 etc., then at 11:08 it turned out to be a chiffchaff call, cos I saw a little brown bird, either chiffchaff or willow warbler, and could then find out which, after hoping to see.
• 10:49 Crow in cherry, taped craw at 10:50 for 3’ till it flew away.
• 15:32 TT: chiffchaff song way there & back, blackcap short, crow deeper, chiffchaff cheep at the back of the garden.
• MoultingTits: It was yesterday and today that on a forum someone explained the black areas on the Tits are from moulting, the lack of protection being a reason for them to be shyer.
• 17:18 Saw robin after rustling made me spy around the veranda corner with my phone-camera
• 6:03 jack sounding a bit like that sound recently.

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats (0). Bank vole(s) (0). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .
Black flies hardest to identify. One sitting on my laptop makes me be careful…

e) Human life: (TT laughter Skip-Bo Wife Music ())
f) Environment: (outdoors/fresh air .)
g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().)

Simplified: Grid function .

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-08 Monday

Summary:

• LDN Jun 20th- 1.5mg for Energy ’30%’ , usabiity increasing = 14% (), energy profile from ‘very slow’ more to ‘slow’ /(), TT 2:1 (), jackknives (), walking / cycling 20’ ().
• Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. 1 bite turned out OK .
• Creatine 5mg from 3rd on helped overcome the flare.
• Last focal seizure: Jun 29th (2) (+9d ).
• Sleep: Screen curfew OK-ish (), late bed cos of: blog, pigs, the moth '‘. QCS at 5:00 .
• Fresh air: 20h .
• Thoughts: -
• Feelings: -
• Cheer: Appreciating the many little things… Big & little hedgehog!
  Body & brain fog improving () (unless I’m strained/irritated by people talking).

Pic(k)s of the Day

= expanding happiness
(12 of 92 pics & 8 videos (30’))
Wall-lettuce blossom:

Golden ragwort blossoms:

Surprise 1 of the day, and week, an ‘imperial rove beetle’:

The ‘pasture grass-veneer’ again, better pic than last time:

Surprise 2 of the day, and week, and month, and year, a big hedgehog (scratching) and a littl’un, a hoglet (snorting):

Big one’s scratching himself a lot from lice, and has a white tick at the rear end, wish I could take and bathe:

Honeybee and cader-bee again:

LDN: After July 3th recovering from the 4 doc appts (talks), the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. 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 - shop 10' (wife did most), much worse than quiet moving ❌, not listening to music at the moment, so not sure, woodpigeon calls are usually my earworms/hooks (❌), white lips 70-80% (❌), TT 2:1, 3rd close, felt OK after (moving/talking/counting 15%) (✅), moving ➔ 80%/3-4 (❌) - not bad despite strain of health bills, supp & camera ordering this morning, balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 8h15 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 8h15, 30' deep doze ✅, QCS at 5:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:15-8:00 4+4+3+4+12+3’, 30’ deep doze. Sum: h45+8h-(x5’=)30’ = 8h45-30’ = 8h15.
23:15-
0:40 4’ Beau lines
1:38 4’ Throat less dry cos of drinking more in the daytime?
2:53 3’
4:21 4’ robin
5:25-36 12’ jacks, 2-3 woodpigeons, 3-4 GreatTits with varying calls, unusual atm. QCS
7:25 3’ still dozing
-8:00

2) Watching TRIGGERS, esp. of exhaustibility. 1 bite turned out OK ✅. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. 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 (✅). 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-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): 8th: Wonder if Creapure will cause loose stools if I take 5mg, as more concentrated, so better divide it up. Creatine 5mg July 3rd- helped overcome the flare, Creapure is the right form, malate has too little evidence. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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: Creatine 5mg July 3rd- helped overcome the flare, Masterjohn recommends that and Creapure is the right form, malate has too little evidence. 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. 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:

• Having the energy, I checked health bills, then found I can get cheapest Creapure locally, very rare, ordered the right camera. The strain of all this made me shaky, making feeding harder. 12:27 still feeling OK despite that, 5mg again.
• Deleted blog voice note note, but I could attach the VN again, cos they’re still there. Wasn’t a foggy, it was just careless, or rather my mate says cos of sweat from the hot weather, so have to be more careful when putting the phone in my pocket, cos it’s doing things by itself, like phoning people, deleting, editing.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) -
b) Birds:
Every day cheer, song/calls/seen: Woodpigeons Blackbird family less shy, quiet Robins short song Sparrows (quiet) Blackcap only at TT () Swifts 10x , Magpies Jacks , bathing 10x/d (chiffchaff? and Blaxie) , Crow , Great Tits & BlueTits, incl. “black” ones , Collared dove .
Latest / earliest robin song: …22:30/ <4:00…
(Regular cheer, song/calls/seen - Chaffinch , Chiffchaff , Wren , Great Woodpeckers (), song thrushes nearby (), Dunnocks 0, Nuthatches 0.
13:31 Keep disturbing the woodpigeon sitting where I want to go.
14:00 Magpie just got a peanut from neighbour’s bird food. Woodpigeon came close as if wanting to make him go. Standing behind beech is a fairly good hiding place.
16:45 peregrine, blackcap and chiffchaff all calling at TT, not seen.
17:27 back in garden a woodpigeon had made itself comfy on the veranda roof, chiffchaff in ivy, hedgehog furrowing in rhododendron, so I went back to the front.
18:32 Got bird calls confused, it was ‘only’ a chaffinch I thought was a willow warbler.
18:32 chiffchaff in yew, 18:39 in Boston ivy.
18:35 wren, wren bathing this morning, too.
19:38 a Blaxie feeding on balcony 1m from my wife, I disturbed unwittingly.
20:44 300 jacks flew over us in groups of 10, so our local group has now grown from all the migrated ones.

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats () Bank vole(s) . Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .

• 12:21 Big and smaller hedgehog! Smaller one under giant boxwood, then under the rhododendrons bigger one came and greeted the little one with a surprising chatter (German: keckern) like a magpie, wish I’d got my camera on earlier, cos on many pages where they list 10+ sounds or any youtube videos this sound is not on it. When they came together the little one puffed and they had their snouts close a lot of the time. The bigger one was quiet, but after a while scratched a lot, and there was an enormous white tick on the right of the tail (next day this was black and even larger). I filmed 21’ till the bigger one went to the back, and later another 1’ when they were at the front again together. The littl’un alone still huffing and puffing.
• 13:31 quite a few butterflies.
• 18:32 Dark mouse, is that a darker bank vole or a common vole / field mouse?
• 18:32 hedgehog rustling?
• 23:04 took a pretty moth outside for my wife, but for better pics to identify it, I’d’ve needed my 2nd torch phone with me.
• 23:04 No insects, but loads of (Spanish) slugs, altho it’s not moist, most are near my water places tho.

e) Human life: (TT laughter Skip-Bo Wife Music ())
f) Environment: (outdoors/fresh air .)
g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().) Improving .

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-09 Tuesday

Summary:

• LDN Jun 20th- 1.5mg for Energy ’30%’ , usabiity increasing = 15% (), energy profile from ‘very slow’ more to ‘slow’ /(), TT 2:1 ()/(), jackknives (), walking / cycling 20’ ().
• Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. Tooth cleaning on Friday, don’t think I’m up to it, wife confirmed so am postponing (August). 2 bites OK left waist, right wrist. 2:38 Bellyache, 2x350g beans? 10:46 queasy and sick 5-10’, then feverish 30’.
• Creatine 5mg from 3rd on helped overcome the flare.
• Last focal seizure: Jun 29th (2) (+9d ). 19:56 prevented focal seizure.
• Sleep: Screen curfew late , late bed cos of: pigs, washing hair late, out in garden, looking up my energy development '‘. QCS at 3:00 .
• Fresh air: 20h .
• Thoughts:
• Feelings: -
• Tracking energy levels: I’m still recovering from the 2 appts. Jun 7th and 10th.
• Cheer: Appreciating the many little things…
• Simplifying: voice note transcription.

Pic(k)s of the Day

= expanding happiness

Starting with the my typical ones, then chiffchaff first (blurry) pics, hedgehog and next to them another Wow of the year for me, a hornet mimic hoverfly, 3 butterflies, and some dainty creepy-crawlies:

“The devil is in the details” - these devil’s paintbrush blossoms are hiding a bit:

Chiffchaff bathing in the zinc tub (very blurry, but first time I’ve got the chiffchaff) - which supposedly old neighbours’ kids used to be bathed in half a century ago:

Wow, the big hedgehog here again. “Rustling in the hedgerow” every now and then shows they’re around, not sure where, they have several deadwood areas to choose from:

This is one of the wows of the year: a hornet mimic hoverfly:

A pearl grass-veneer again, cute the way they hide on stalks of grass, with their big eyes:

A peacock:

Green-veined white, identical to a cabbage white from above, 2 spots meaning female, but green-veined from below:

Black-tipped or common red soldier beetle (why are so many called “soldier”? Ah, cos the first ones discovered supposedly reminded of soldier’s jackets… Hmm… Alternatively ‘leatherwings’ or in German ‘red soft beetle’):

*The big ants are around now, many with wings. The little ones are sterile, but these are male and female and bred to mate, the males to die, the females to start a new colony, become a queen ant and bite their wings off.

Don’t laugh, don’t cry , this is a tiny “orangie” = (cross) garden spider with its orb web (only visible on photos) on my work desk (a bar table) keeping things clean by catching any small flies. Been there for 3-4 days now, my pet spider, hasn’t got a name yet, but Orangie is very fitting… :

LDN: After July 3th recovering from the 4 doc appts (talks), the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. 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: Shop 10' in evening for Creapure, wife came with me, but was narked when I couldn't wait for her to get a roll to go/takeway. That's why it's ambivalent her helping me. Talking 10' ➔ 80%/4 (❌), hardly music (❌), white lips 70-80% (❌), TT morning 2:1, only lost 1 cos of a heavier “wind ball” I wasn’t used to, took a lot of energy and re-adjustment, but quite good (moving/talking/counting 15%) (✅), moving ➔ 80%/3-4 (❌), balance (❌), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 85% ❌ and sleep 7h51 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 7h51, 10' deep dozing ✅, QCS at 3:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:30-7:56 7+21+4+3, of that 10’ deep doze. Sum: h+h-(x5’=)35’ = 8h26-35’ = 7h51.
23:30- back. Flash of lightning, long johns off, 3p of socks
0:55 7’ 1:02 trying to film lightning unsuccessfully, now 5p sox
2:38-2:59 21’, cos 4’, then 2:46 unrest, so QCS 2:56 2 bites OK left waist, right wrist. Bellyache, 2x350g beans? Praps dry mouth gel.
5:15 4’
7:44 4th GABA, trying to doze a bit.
7:56 up after deep dozing 10’

2) Watching TRIGGERS, esp. of exhaustibility. Tooth cleaning on Friday, don’t think I’m up to it, wife confirmed so am postponing (August). 2 bites OK left waist, right wrist. 2:38 Bellyache, 2x350g beans? Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst, and still not "fully" recovered ('20%'). 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 (✅). 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-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): 10:46 suddenly queasy and sick for 5-10' whilst kneeling straight, laptop, cool in guinea pig's room, so can't be weather, feeling feverish after. 19:56 prevented focal seizure after reading something that had been strenuous for me, but managed to relax in time. This shows how I can recognise triggers and alleviate trigger reactions. Creatine 5mg July 3rd- helped overcome the flare, Creapure is the right form, malate has too little evidence. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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: Creatine 5mg July 3rd- helped overcome the flare, Masterjohn recommends that and Creapure is the right form, malate has too little evidence. 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. 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:
When my wife helps, she is often narked, cos actually anything is too much, that’s why it’s ambivalent her helping me, or actually: don’t like it.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants:
Counting big blossoms: ‘44’ each of white and blue fairy bellflowers, rose Campion 130. Counting seems silly, but it often shows me I’ve overlooked something, like in this case dead heads to deadhead. Tradescantia has lost this year, 5, suneyes 15, but I think they’ll increase with more sun, OTOH the horse mint is starting its bushy blossoms, that’s promising for insects, if not as showy.
b) Birds:
Every day cheer, song/calls/seen: Woodpigeons Swifts 20 Jacks 300 , all the rest quieter: blackbird (less shy) Robins Sparrows Magpies bathing 10x/d , Crow , Great Tits & BlueTits , Collared dove , Blackcap always short at TT ().
Latest / earliest robin song: …22:30/ 4:15…
(Regular cheer, song/calls/seen - Chiffchaff , Wren , often Chaffinch , Great Woodpeckers 0, song thrushes nearby 0, Dunnocks 0, Nuthatches 0.

• 9:20 Woodpigeon expected food, and managed to stay 1-2m near whilst I filled in the sunflower seeds:*
• 11:47 Enormous(?) black bird flew up and over the rooves, crow or raven?
• 11:47 chiffchaff bathing in zinc bath tub come sandarium, which I’ve put stones in for birds and near me, less shy now.
• 13:35 chaffinch in garden and TT.
• 14:25 woodpigeon looking for twigs for a new nest next door.
• Home from shops yesterday evening a blackbird sang abit, then while flying.
• Only woodpigeons (& robins) main singers now.

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats () Bank vole(s) (). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails less, slugs in rain .

• 12:07 green-veined white pair on oregano and rough hawksbeard
• 12:12 Another brown butterfly, too fast, praps a peacock.
• 23:22 20 Spanish slugs in the garden. Grass veneer praps twice.

e) Human life: (TT laughter Skip-Bo Wife Music ())
f) Environment: (outdoors/fresh air .)

• 23:22 In garden in the evening to catch up on fresh air, cos of closed windows to keep the heat out.
• Thunderstorm, love it! Still managed to keep windows open all night.

g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().)

Simplified:

• Can’t make my mini-tripod useful, even using a microphone tripod with it. But my daylight lamp helps improve the Orangie photos, feels like in a studio.
• Voice notes best in writer, then do sum last instead of first, copying sleep notes first too, and anything important into Sum. So maybe put Sum column at end of the file.

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

New era begins: From now on I’m mainly using a “big” camera…

2024-07-10 Wednesday

Summary:

• LDN Jun 20th- 1.5mg for Energy ’30%’ , usabiity increasing = 16% ()/(), energy profile from ‘very slow’ more to ‘slow’ /(), TT 3:1 no problem. (), jackknives (), walking / cycling 20’ (). Managed pension stuff & camera, both a strain .
• Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst.
• Creatine 5mg from 3rd on helped overcome the flare. Creapure OK.
• Last focal seizure: Jun 29th (2) (+9d ).
• Sleep: Screen curfew late , delayed bed from 22:45 to 23:23 from insect identifying '‘. QCS at 10:00 .
• Fresh air: 20h .
• Thoughts: Not bad delaying blog a few days, even tho it puts me unter pressure, that way I prompted, reminded, can compare how things have developed. Edit Saturday: Sometimes I’m really surprised when some things occurred, like I couldn’t remember it was the wren family was here again that recent, whilst everything else (shop strain, getting stuff done, camera, peregrines) is present. Sometimes I edit, like that, and research I just write down when I do it, not on the respective blog entry. May be a bit confusing, but not that much. (After pinning this down, and getting up, the Wren was 2m away from me, I could have got 10 beautiful shots, but the camera didn’t work like I wanted. :groan:)
• Feelings: Weird using a camera now, cos I’ve never been one to take photos, esp. not of people, esp. esp. not having photos taken of me…
• Self-care: Need to tackle how shops are straining me, making me shaky.
• Cheer: Appreciating the many little things…

Pic(k)s of the Day

= expanding happiness

Just testing: Carnations on balcony:

Just testing: Geranium (Pelargonia) on balcony:

Then more adventurous, birds far away…:
Magpie on house opposite, 60m away:

Woodpigeons billing and cooing on next door’s garden house:

Swift before a vague rainbow:

"Swift snips, eyes etc. now better visible:*

LDN: After July 3th recovering from the 4 doc appts (talks), the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. 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).

Details of today’s main issues:

• 8:51 even early shop is a heck of a strain. Shaky that I knocked over blueberries and a sweet potato fell down, picking that up was a strain, but good that no one was around and I could just pick and clean up in my own speed.
• 16:15 Managed quite a lot of strain things today: looking for pension stuff & camera and skipped feeding at 3. So energy might be 15-16%.
• Do seem to be recovering a bit energy-wise, but shops floor me just as much.

1) MAIN ISSUES: talking 10' ➔ 80%/4 (❌), no music (❌), white lips 70-80% (❌), TT 0:1 ➔ 3:1, no problem, except having to relax brain, but body wasn’t tense. (moving/talking/counting 15%) (✅), moving ➔ 80%/3-4 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 84% ❌ and sleep 8h37 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 8h37, 40' deep ✅, QCS at 10:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:23-8:32 16+3+3+3+4+3’, 39’ deep doze. Sum: h37+8h32-(x5’=)’ = 9h09-32’ = 8h37.
23:23 bed after insect
0:29 16’ Q6, encapsulate GABA
1:48 3’
2:46 3’
4:12 0 birds
5:55 now ear plugs 4’
7:53 3’, dozing
8:32 after deep doze

2) Watching TRIGGERS, esp. of exhaustibility. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst, and still not "fully" recovered ('20%'). 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 (✅). 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-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): 9:10 Creapure 3g seems OK. On the previous sort it does say “100%” pure and “Made in Germany”, altho a company name Hirundo sounds Asian. Taste and texture is different to Creapure tho. Creatine 5mg July 3rd- helped overcome the flare, Creapure is the right form, malate has too little evidence. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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: Creatine 5mg July 3rd- helped overcome the flare, Masterjohn recommends that and Creapure is the right form, malate has too little evidence. 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. 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:
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) -
b) Birds:
Every day cheer, song/calls/seen: Woodpigeons Swifts 20 Jacks 300 , all the rest quieter: blackbird (less shy) Robins Sparrows () Magpies bathing 10x/d , Crow (), Great Tits & BlueTits , Collared dove (), Blackcap always short at TT .
Latest / earliest robin song: …22:30/ 4:15…
(Regular cheer, song/calls/seen - Chiffchaff , Wren , often Chaffinch , Great Woodpeckers 0, song thrushes nearby 0, Dunnocks 0, Nuthatches 0. Peregrines above .

• 10:38 Wren family close to the veranda, 2 very close to each other, but I couldn’t see if flirting or feeding. Close contact, sometimes front to back, sometimes front to front. 10:49 singing loudly in cherry, squeaks around are the family. 10:56 again, both family below in front of me in wood corner and him I could see singing on lower branch cherry. 10:58 scolding & scared them away when I got up. But 11:09 again singing in cherry, flying whilst singing to the magnolia.
• 10:56 chiffchaff. Peregrines above us squealing like I thought baby magpies.
• 11:56 woodpigeon nest-building all day, haven’t identified which ones, had difficulty distinguishing them the past few months.

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats () Bank vole(s) (). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .

e) Human life: (TT laughter Skip-Bo Wife - In the garden a bit together Music ())
f) Environment: (outdoors/fresh air .)
g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().)

Simplified:

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-11 Thursday

Summary:

• LDN Jun 20th- 1.5mg for Energy ’30%’ , usabiity increasing = 15-16% (), energy profile from ‘very slow’ more to ‘slow’ /(), TT 1:1 (), jackknives (), walking / cycling 20’ ().
• Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst.
• Creatine 5mg from 3rd on helped overcome the flare.
• Ordered lumbrokinase for blood clots and plaque, supposedly much better than nattokinase.
• Last focal seizure: Jun 29th (2) (+9d ).
• Sleep: Screen curfew late , late bed cos of: blog, pigs '‘. QCS at 10:00 .
• Fresh air: 20h .
• Thoughts: Strain from people from over-empathy and “irritation”/over-“excitement”.
• Feelings: -
• Self-care / rabbit holes: Camera old and new, identifying, baby squirrel…,
• Cheer: Appreciating the many little things… see pics, plus occasional blackbird song.

Pic(k)s of the Day

= expanding happiness

Golden ragwort blossoming more fully:

First firethorn blossoms:

Devil’s paintbrush, what is that “dirt” on the blossom?"…:

Ah, it’s loads of tiny anthers, that’s how they compensate for the few blossoms!!:

Redbrown squirrel feeding:

Young blue tit feeding, here there’s too little black, unlike the adults moulting:

Sundown with swifts:

Swift nosediving:

My first Comma butterfly! - wings slightly up, wings slightly down, it came 4x to sun itself, last it was fittingly where the pavilion was rusty…:

And rust to rust!:

2 peacocks on wall nearby:

A new bee! Hole-dwelling bee on suneye/oxeye:
(upload://j9I1UtxiaHvnaEckr9qHEUGg2DB.jpeg)

Another new one, Hercules ant / northern carpenter ant, always difficult to distinguish ants, bees, hoverflies, see the difference between the hole-dwelling bee above and this Hercules ant?! - yeah, I’m learning to…:

Honeybees on oregano:

LDN: After July 3th recovering from the 4 doc appts (talks), the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. 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 (❌), hardly music (❌), white lips 70-80% (❌), TT 1:1, playing brilliantly until our 2nd TT-mate praised that, see self-care (moving/talking/counting 15%) (✅), moving: Energy 15-16%, but shaky and jittery making movements like feeding difficult, whilst TT was OK for 1.5 games ➔ 80%/3 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 85-86% (❌) and sleep 7h41 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 7h41, all deep ✅, QCS at 10:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:15-7:13 4+4+5+4’, 0 deep doze. Sum: h+h-(x5’=)’ = 7h58-17’ = 7h41.
23:15 back/bed
0:38 4’ pillow over head was enough for people talking and singing on the street. A3 meds!
1:50 4’ 1st GABA
3:44 5’ 2nd GABA, 1st brown of ?3?! 0 birds. Dreaming of insect identifying. Remembered I may need to export 2 pdfs for work/pension. Squirrel thought.
5:07 3rd dreaming of wildlife ID and an enormous ladder for garden/birds
-7:13 slowly to loo downstairs, balance, but after that street cleaning machines, so -7:23 doesn’t count.

2) Watching TRIGGERS, esp. of exhaustibility. I spose it counts as a trigger too, when I over-empathise/over-excite from peopling. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst, and still not "fully" recovered ('20%'). 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 (✅). 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-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): Creatine 5mg July 3rd- helped overcome the flare, Creapure is the right form, malate has too little evidence. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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: Creatine 5mg July 3rd- helped overcome the flare, Masterjohn recommends that and Creapure is the right form, malate has too little evidence. 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. 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:

‘Research’ today
Someone pointed me to lumbrokinase for plaque. I didn’t know of it, but have been using fairly “high” dose nattokinase for half a year now, which seems to have similar effects, is easier to get and a lot cheaper. However here

Lumbrokinase vs Nattokinase vs Serrapeptase: What's the Difference?

it points to “a study comparing lumbrokinase to Serrapeptidase, aka serrapeptase, and nattokinase on a milligram to milligram basis, researchers found that lumbrokinase is about 300 times (1/294) stronger than serrapeptase and 30 times (1/36) times stronger than nattokinase. (R)” R = saying: that’s the fibrinolytic strength.

Lumbrokinase – An Enzyme for More Than Just Circulatory Health!

Seems I’m on the safer side with nattokinase than with serrapeptase that article also says. “serrapeptase is not considered a strong fibrinolytic enzyme and should primarily be used for inflammation and pain association with oral/facial surgeries, sinus infection, arthritis, or chronic airway diseases. Respectively, nattokinase and lumbrokinase would be more suited for patients with mild and severe hypercoagulation or for patients with low and high cardiovascular risks.” Serrapeptase which I’ve also tried is also pretty expensive and I didn’t feel it did anything.
The “R”-article explains that lumbrokinase is hardly known outside Asia, cos most research is Chinese. Couldn’t find striking research in on it the last 3 years.
As I definitely need alternatives to the statin/ezetimibe/fillers I can’t take, I really shouldn’t be stingy about lumbrokinase, so I immediately decided to order it - via import.

Quality of life: 90%

Lessons in self-care:

• Rabbit holes: 10:14 Under pressure to send the wrong camera back, and trying to download a pic transfer app for the camera which was incredibly annoying and just taking out the SDHC-card turned out much easier, so late with eating & feeding. Stress of camera making me shaky. 21:39 timely, then blog, then forum, made me find and order lumbrokinase, so eating and feeding 21:15. 23:13 Identifying new insects is too exciting *sigh. All that makes me dream of doing so, which is nice, may take my mind off other things, but…
• Interesting when my wife found such a cute squirrel baby on a street in front of our house she was sad and that made me sad too, but taking later and burying under the cherry on my own was just lovingly (my ritual was “I love you”), like with the young blackbird a while ago I found myself.
• Similarly during TT I played brilliantly until my 2nd TT-mate commented on that, and then I lost all last points and the last game.
• I felt unsure about taking the camera to TT with me, cos I’d surely not be on my toes about it if anything unusual happened. But the peregrines there are tempting, a major reason for the camera.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

b) Birds:
Every day cheer, song/calls/seen: Woodpigeons Swifts 20 Jacks 300 ,
all the rest except crow(s) quiet, so many in double brackets: blackbird (()) Robins (()) Sparrows (()) Magpies () bathing 6x/d , Crow(s) , Great Tits & BlueTits (), Collared dove (()), Blackcap always short at TT (()).
Latest / earliest robin song: …??22:00 / ??5:00…, but 22:15 and 5:08 blackbird scolding time (Sunrise 5:25, sunset 21:43)
(Regular cheer, song/calls/seen - Chiffchaff (), Wren (), often Chaffinch (), Great Woodpeckers 0, song thrushes nearby 0, Dunnocks 0, Nuthatches 0.

• 10:30 short burst of blackbird song!
• 19:20 possibly Great Woodpecker call once (next day there def. was one around)

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats () Bank vole(s) (). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .

e) Human life: (TT laughter Skip-Bo Wife Music ())
f) Environment: (outdoors/fresh air .)
g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().)

Simplified:
Sunday: Easier to manage entering to leave the pic uploads at the end of the entry until I’ve finished entering the voice notes into the template.

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-12 Friday

Summary:

• LDN Jun 20th- 1.5mg for Energy ’30%’ , usabiity increasing = 15% (), energy profile from ‘very slow’ more to ‘slow’ /(), TT 0:2 (), jackknives (), walking / cycling 20’ ().
• Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst.
• Creatine 5mg from 3rd on helped overcome the flare.
• Last focal seizure: Jun 29th (2) (+9d ). Not so seizure-ish atm.
• Sleep: Screen curfew late , late bed cos of: blog, pigs… '‘. QCS at 5:00 . Apigenin more often? Or just go to bed earlier. Easy. .
• Fresh air: 20h .
• Thoughts: -
• Feelings 1: 14:26 Knowing the names of what’s around me isn’t just making me feel at home, that has to do with security in a world in which I feel insecure. Why I’ve always been ‘afraid’ when I went elsewhere or started new things, altho I loved that at the same time. It was always a strain, which now has gotten too much. (Pity party.)
• Feelings 2: Wife rolled her eyes when I told her the difference between a green-veined and a cabbage white (Rapsweißling and Kohlweißling). So other may be bored about my insects, but no need to read. (Bit embarrassing all the same, opening myself this nerdy.) My wife often doesn’t seem interested in what I’m interested in, but she says and I guess that’s cos I overdo it. Birds and animals are one of several common interests, probably many actually.
• Cheer: Appreciating the many little things…

Pic(k)s of the Day and some more from Wednesday 10th

= expanding happiness

Our young woodpigeon is around again:

Moulting magpie flying up to roof opposite:

Severely moulting GreatTit 3x, one moulting less 1x, BlueTit moulting less 5x:

Clear brown line as pattern on this fly, but laptop or general websearch can’t ID it:

And these I took with my phone on Wednesday 10th before I started with the camera:

Firethorn blossom close-ups:

Honeysuckle blossoms:

Broomtail millet (that name is fitting!) next to the balcony sunflower:

Upright / yellow woodsorrel / oxalis clover blossom:

Artemisia-blossoms at night - I used to take more pics at night:

No ID, despite a pretty clear picture:

LDN: After July 3th recovering from the 4 doc appts (talks), the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. 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 (❌), no music (❌), white lips 70-80% (❌), TT 0:2 in rain (moving/talking/counting 15%) (✅), moving ➔ 80%/3-4 (❌), balance (❌), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 85% ❌ and sleep 7h50 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 7h50, all deep ✅, QCS at 5:00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:43-8:15 4+4+4+3+27’, 0 deep doze. Sum: h17+8h15-(x5’=)42’ = 8h32-’ = 7h50.
23:43 back/q6/bed
01:11 4’ regularl balance problems since evening, slightly sore throat, bit cold, so longsleeve
2:19 4’
2:51 3’ no pee urge, feeling as if I’ve been dozing. Dry throat.
4:13 3’
05:37-6:03 27’ QCS cos of dozing 10’ and too awake.
-8:15 QCS was worth it

2) Watching TRIGGERS, esp. of exhaustibility. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst, and still not "fully" recovered ('20%'). 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 (✅). 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-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): 5:37 some pangs Friday, in my right hand, similar to those I had recently in my left or right foot. And a short pang in my left frontal lobe, couldn’t feel if inside or outside, I guess there aren’t that many muscles outside. 5:51 maybe underestimating apigenin and should take it more regularly. But I bet it’s going to bed late. Creatine 5mg July 3rd- helped overcome the flare, Creapure is the right form, malate has too little evidence. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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: Creatine 5mg July 3rd- helped overcome the flare, Masterjohn recommends that and Creapure is the right form, malate has too little evidence. 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. 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:

• 14:22 finished papers/files to copy, copy shop was OK using a copy card. But post at 2 was a strain, altho short, and people nice, seem to realise how rattled I am, help me. So hard to speak.
• 17:14 After fun of playing in rain and thunder and the heavy shower following, good that I was sensible to want to go home to change wet clothes – not too much risk.
• Active today, post office, cooking, forum stuff (bird & MCAS), supp stuff, guinea pig early cos needed to go to the vet, identifying interesting stuff - so now 4 days behind with blog.
• 2:52 Think I should go back to washing just finger tips, not hands, to put less strain on my knuckles (left 3rd and 5th)
• Wife worries about the 1’ “brain cramp” yesterday evening, but no idea what from, too random to focus on it.
• No idea what this meant at 2:19 Last few blurry photos possibly cos switching the camera too soon, a tenth. But at least this shows my voice notes are usually intelligible.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) -
b) Birds (new order July 12th):
Every day cheer, song/calls/seen: Woodpigeons Swifts 20 Jacks 300 to roost (1-2 in garden) , Magpies Crows , Great Tits & BlueTits , all the rest quiet: blackbird (less shy) () Robins () Sparrows () bathing 6x/d , Collared dove 0, Blackcap usually short at TT (0).
Latest / earliest robin or blackbird song: ?22:00/ ?4:30…
(Regular cheer, song/calls/seen - Chiffchaff , Wren , often Chaffinch , Great Woodpeckers at TT , song thrushes nearby 0, Dunnocks 0, Nuthatches 0.
14:22 Blackbird sang next to a dual carriageway road at post office!
05:37 may have heard blackbird in sleep, maybe memory, maybe real, aside from woodpigeons, jacks.
Listening to recordings of them makes me wistful, prefer waiting for the occasional short bursts.

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats () Bank vole(s) (). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .

• Luckily guinea pig’s upper teeth are OK, vet said, despite no lower teeth, and he’s still gaining weight and can now eat even better on his own.
• “Brown moth” on the kitchen tray up on cupboard turned into an orange butterfly when it flew out, too fast for pic.

e) Human life: (TT laughter Skip-Bo Wife Music 0)

• 17:14 Happy to have brought the paper work / wrong camera to the post office.
• Good for my wife I found a moth before she did… (altho she wasn’t as grateful as I wanted her to be. )

f) Environment: (outdoors/fresh air .)
17:14 Exciting to play TT in rain and thunder, fun to be ‘careless’. When it started pouring, we got under a roof for 15’, and then my mate thought we might even continue, altho fairly wet.

g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().)

Simplified:
Found a new way to get up at night, by throwing my legs/knees circular to the right, that seems to take less energy and heart pump

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-13 Saturday

Summary:

• LDN Jun 20th- 1.5mg for Energy ’30%’ , usabiity increasing = 14% (), energy profile from ‘very slow’ more to ‘slow’ /(), TT 2:1 (), jackknives (), walking / cycling 20’ ().
• Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst.
• Creatine 5mg from 3rd on helped overcome the flare.
• Last focal seizure: Jun 29th (2) (+9d ).
• Sleep: Screen curfew late , late bed cos of: blog, pigs '‘. QCS at 6:30 .
• Fresh air: 20h .
• Thoughts: -
• Feelings: Never liked taking photos, never liked getting them taken, but this is cherishing nature as art, making an art of cherishing. Cos it’s quick I don’t have to work much, apart from learning the technical know-how, doesn’t take weeks like when I made a piece of music. I can just take what’s Given.
• Feelings: Annoying when the camera doesn’t work like I expect and I miss brilliant pics, like the wren.
• Brain fog: Exasperating to see playing Labyrinth is way above my limits.
• Cheer: Appreciating the many little things… Guinea pig heavier than ever before!

Pic(k)s of the Day

= expanding happiness

Buds again of Herb Robert / death come quickly / red robin / Robert geranium:

Buds of one of the 2 blackberries I didn’t plant - good stuff, “native” and “attractive”:

Devil’s paintbrush today:

If this is Calystegia sepium, there’s 25 English names for this new one with first blossom. Brilliant. I’ll choose bellbind for today. But Plantnet says it’s more likely Calystegia sylvatica / sylvestris, then I’ll choose “great bindweed”:

The cushion-like moss I got from the neighbourhood and planted to fill up the wood corner has grown very well:

Jack(daw)s: one near the garden, the group trooping up and flying off to roost. Like my avatar picture. Maybe my favourite bird, used to be at least, now I’ve lost “favourites”, each is brilliant:

Woodpigeon pair:

Rest of a green and scarlet leafhopper (Graphocephala fennahi / coccinea) /
rhododendron cicada / leafhopper. Good or bad? When alive very pretty, but “native to the mountains of southern Virginia, the western Carolinas, and northern Georgia”, introduced here in the 1970s. “Vital food for ladybugs, spiders, and some parasitic wasps.” Possibly causes rhododendron fungus, but mine are fine this year. Seen this last year and this, live pic soon.

Lesser yellow underwing, here the flash belies its brown colouring with yellow/orange underwings, and this will be the moth/butterfly I found in the kitchen yesterday evening, another mystery likely solved:

LDN: After July 3th recovering from the 4 doc appts (talks), the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. 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: Two shops in the evening, 5’ per shop, took it slow, quite a strain ❌. Talking 10' ➔ 80%/4 (❌), no music(❌), white lips 70-80% (❌), TT at 12:16 was 2:1 losing energy in the 3rd game (moving/talking/counting 15%) (✅), moving ➔ 80%/3-4 (❌), balance (✅), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (✅), stiffness (✅), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 7h04 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 7h04?, all deep ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:17-7:35 38+3+4+3+26’, 0 deep doze. Sum: h43+7h35-(x5’=)1h14 = 7h78-74’ = 7h04.
23:17- back bed, A3
0:28-1:06 38’ wondering if/when LDN will reduce sleep breaks, like when I first took it they went down to 3, q6.
02:27 3’ feel slightly cold, altho got everything on, so thicker 2nd duvet
3:48 4’ 2 warm duvets are better when windows open despite it being cold.
4:33 3’
6:28-6:52 26’ up waiting to go to toilet, so went downstairs, 5’ deep doze, too awake so QCS
-7:35 I think?

2) Watching TRIGGERS, esp. of exhaustibility. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst, and still not "fully" recovered ('20%'). 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 (✅). 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-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): Creatine 5mg July 3rd- helped overcome the flare, Creapure is the right form, malate has too little evidence. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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: Creatine 5mg July 3rd- helped overcome the flare, Masterjohn recommends that and Creapure is the right form, malate has too little evidence. 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. 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:
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
b) Birds (new order July 12th):
Every day: Woodpigeons Swifts 20 Jacks 300 to roost (1-2 in garden) , Magpies Crows , Great Tits & BlueTits , all the rest quiet: blackbird (less shy) () Robins () Sparrows () bathing 6x/d , Collared dove 0, Blackcap usually short at TT (0).
Latest / earliest robin or blackbird song, only 5’: ?22:00/ ?4:30…
(Regular cheer, song/calls/seen - Chiffchaff , Wren , Chaffinch , Great Woodpeckers 0, song thrushes nearby 0, Dunnocks 0, Nuthatches 0.

• 10:33 chiffchaff & 12:40 singing, after jacks early, woodpigeons always, no swifts
• 11:27 Heard Great Woodpecker at TT
• 14:30 blackbird singing at shop, but 0 goldfinch any more. (wren? Not sure of my VN).
• Interesting that the blackbird like the goldfinch are near shops, and the other blackbird singing ther other day was near a dual carriageway road. So more active birds in more active environments, but which is cause, which effect, and what’s choice, what’s necessity, if necessity: necessity of active place or of action.
• 17:48 Chaffinch rain call
• 17:56 keep hearing a sound like a young magpie
• 17:59 crow for the first time today (usually before sunrise tho)
• 18:40 wren nearby in full pearly attire
• 22:05 Bedtime scolding call by robin, then wren, then together, then GreatTit, then blackbird on street 3’. 0 birds late or early. Woodpigeons. Jacks only early, not late.
• It’s getting so rare to hear and see most bird types that I have to change the template on that.
• 6:52 swifts, crows, Great&BlueTits

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats () Bank vole(s) (). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .

• 10:29 taking water out of the rain barrel I’ve realised I can’t avoid taking gnat larvae out, so not too much zen.
• Guinea pig heavier than ever before!

e) Human life: (TT laughter Skip-Bo Wife Music ())
Wife comforted me about not being able to play Labyrinth
f) Environment: (outdoors/fresh air .)
g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().)
21:39 Tried to play Labyrinth, but I couldn’t get my head around it. (My wife suggested it warily, cos I’d always beaten her at it.) Exasperating to realise I’m way above my limits. My wife comforted me that I’d done so much today. After we played skip-bo and I walked thru that winning in <10’ (cos I had lots of skip-bos and didn’t make any mistakes), and she said see, Jesus loves me, and she does too. And that it’s hard for her too, tomorrow’s another day. And that skip-bo is easier for us as we play it every day.

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-14 Sunday

Summary:

• LDN Jul 14th-17th 0.75mg Jun 20th-Jul11th 1.5mg () for usable energy = 14% (), energy profile from ‘very slow’ more to ‘slow’ /(), TT 1:2 (), jackknives (), walking / cycling 20’ .
• Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst.
• Creatine 5mg from 3rd on helped overcome the flare.
• Last focal seizure: Jun 29th (2) (+9d ).
• Sleep: Screen curfew late , late bed cos of: blog, pigs '‘. QCS at 4:45 . (eyebrow hurting during it: trigeminus/?stress?) .
• Fresh air: 20h .
• Thoughts: -
• Feelings: -
• Cheer: Appreciating the many little things…

Pic(k)s of the Day

= expanding happiness
Had to select from 750! pics, cos of using serial, reduced to 550, identifying & selecting for ages, very rewarding, with peregrines, buzzard, possibly a raven, definitely a crow, young robin, adult robin with severely moulting GreatTit and more… and starting with myriads of beautiful cloud formations without and with swifts.
Easier to focus with camera than with the unnatural 3D of binoculars

The buzzard drifting slowly like this for a minute till out of sight:

The peregrine(s) for once directly above us:

I thought this was a carrion crow, but my laptop says a raven? Gotta get that checked:

5th of the 6 carrion crows that suddenly revealed themselves today:

Tons of closer swift pics:

My wife could appreciate this contrast like me of rough hawksbeard in hydrangea:

I’d seen this before, but forgotten: a blackberry nightshade has made it right to the top… of the veranda roof, two more on the ground:

Western honeybee flying over suneye/oxeye, I’ve been trying to capture more action like this:

Cabbage white (says laptop) on rough hawksbeard:

Western honeybee and carder-bee on oregano:

Seems a new one, some sand wasp, hope I get a better pic:

This pic’s perfect, but couldn’t get it identified myself. It’s so similar to the (large) rose sawfly / arge, but - [edit] has turned out to be a turnip / beet sawfly. Sawflies I didn’t realise are related to wasps, altho in German they are called leaf wasps:

Is this really Ochina ptinoides? Then it’d live off ivy, yeah, but it’d be an endangered species!:

Not endangered as said, the rhododendron cicada / green and scarlet leafhopper I’ already found a rest of, this is a live one:

Squirrel up front climbing in the small corkscrew hazel, see the little paws, got several views of that cute behind…!:

Another wow of the day, a young robin on the wheelbarrow, then buzzing off:

And another: Robin making friends with the severley moulting GreatTit:

Severely moulting GreatTit:

Less moulting GreatTit in birdbath:

Less moulting GreatTit:

BlueTits bathing:

Two woodpigeons examining the old nest together they’d been trying to choose… but nothing came of it, altho it’s been successfully used:

Woodpigeons “afterglow hop” of the female:

LDN: 10:02 better (that won’t be continuing tho), bit walking on clouds after halving again to 0.75g, but only for a day. After July 3th recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. 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-Jul 13th 1.5mg. Jul 14th- 0.75mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/4 ❌, no music (❌), white lips 70-80% (❌), TT 1:0➔1:2, could have praps played a 4th, but better not, wife thinks so too (moving/talking/counting 15%) (❌), moving: 20:04 shattered after 30’ slow cycle-walk, but my wife needed it ➔ 80%/4-5 ❌, balance (❌), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (❌), stiffness (❌), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 7h45 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 7h45, 10' of that deep doze (✅), QCS at :00 QCS = very quick very cold shower (22 issues under control).

Sleep 23:25-7:55 3+3+3+28+3’, 10’ deep doze. Sum: h35+7h55-(x5’=)40’ = 8h25-40’ = 7h45.
23:25- late
0:38 3’
1:53 3’
3:09 3’
4:34 0 robin, but blackbird scolding and singing, taping that.
05:02 was that a QCS? 28’? 9:26 yes, and left eyebrow was hurting, later stings in right eyebrow.
7:45 3’
-7:55 up after 10’ doze

2) Watching TRIGGERS, esp. of exhaustibility. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst, and still not "fully" recovered ('20%'). 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 (✅). 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-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): Forgot Creapure for 1st meal, so 5g at 14:20. Left eyebrow tender, hurting during QCS at 4:45, later 9:26 stings in right eyebrow. That's I believe a trigeminus reaction and usually signals stress, can't imagine what from cos I wasn't stressed during sleep. Creatine 5mg July 3rd- helped overcome the flare, Creapure is the right form, malate has too little evidence. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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: Creatine 5mg July 3rd- helped overcome the flare, Masterjohn recommends that and Creapure is the right form, malate has too little evidence. 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. 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:

• Wife annoying me by blaming my condition on things she doesn’t like me doing, altho they’re good for me.
• Out late (19:30), then knackered, annoyed, ate 20:15-21:15, wife later, 21:30 skip-bo, guinea pigs 21:45, ate a lot, wife had to finish cage before I could put them back etc… I need to anticipate all that and start eating at 7 so we could go out after. But I keep saying that and don’t do it. Need to talk with her about it.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

b) Birds (new order July 14th):
*Every day: Woodpigeons , Great Tits & BlueTits , Magpies 3 , all the rest (directly) above: Swifts 20 Jacks 300 to roost (1-2 in garden) , Crows 6 , all the rest quiet: blackbird (less shy) () Robins () Sparrows () bathing 6x/d , Collared dove 0, Blackcap usually short at TT (0).
Latest / earliest robin or blackbird song: Late 0, early 4:34 blackbird scolding, then singing 5’, tape corrupt by phone reset, then 5’ robin, 10’ wren, song thrush, 5:02 pigeons cooing
(Regular cheer, song/calls/seen - Chiffchaff , Wren , often Chaffinch , Great Woodpeckers 0, song thrushes nearby 0, Dunnocks 0, Nuthatches 0.
Missed wren again on wheelbarrow and crow above
Great&BlueTits cheeping cutely with one another
13:23 Young robin
13:33 chiffchaff singing near, slightly differently
14:13 Unsure if strange noises were new birds, but probably neighbours.
chaffinch 17:35 at TT and 19:41 on short cycle-walk
19:51 several crows, 20:46 first one, then 2nd, then a pair, then a 5th (pic). All flying East, jacks West. 21:43 Even more carrion crows, or just those 6 in circles.
20:43 Magpies, jacks, 15 swifts, woodpigeons chasing and cooing

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats: big brown bat . Bank vole(s) (0). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .

• 13:19 butterflies: missed brimstone butterfly, lots of whites.
• Guinea pig stably heavy

e) Human life: (TT laughter Skip-Bo Wife Music 0)
f) Environment: (outdoors/fresh air .)
g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().)

Simplified:

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-15 Monday

Summary:

• LDN Jul 18th- 1.5mg Jul 14th (or 12th?-)-17th 0.75mg Jun 20th-Jul11th 1.5mg for Energy ’30%’ , usabiity = 14% (), energy profile from ‘very slow’ more to ‘slow’ /(), TT : (), jackknives (), walking / cycling 20’ (). 14:39 muscles a bit sore, maybe cos of reducing LDN?
• Triggers: Flare May 29th-July (3rd) from strain of 4 doc appts (talks), Jun 7th and 10th worst. July 17th: Still more setbacks than progress.
• Creatine 5mg from 3rd on helped improve a bit.
• Last focal seizure: Jun 29th (2) (+9d ).
• Sleep: Screen curfew OK , late bed cos of: wife late, pigs ‘‘ (I did my best). QCS at 6:40, didn’t work for 40’, but then . Slept “long” (despite longer dozing) tho: LDN or screen curfew?
• 74.2kg at 6:40.
• Fresh air: 20h .
• Thoughts: -
• Feelings: -
• Cheer: Appreciating the many little things…

Pic(k)s of the Day

= expanding happiness

**Today: Squirrel, snail, young chiffchaff, billing and cooing, moon, honey beee close up, flies/wasps/bees/moth/flying ants/harvestman: **
Ross mint starting its furry blossoms, bet they’ll attract many…:

Our adult ‘typically’ redbrown squirrel in the elderberry:

Hmm, I need help to find out what this snail is…:

At last I’ve caught one of the young chiffchaffs cheeping away in the Scotch broom! (it had been difficult to get the focus right here):

Lovey-dovey, dove love, well woodpigeons, actually, but soooo cute, and I can’t decide which pic is best, nor can my wife, these are already only a third:

Took quite a lot of swift pics, but none turned out as near as I’m now aiming for. So just two atmospheric ones of swifts under the moon, and then an aeroplane under the big fat moon:

Now I’ve found out the turnip / beet sawfly turns up again. Well, it’s no rarity, altho so pretty:

No idea, so small, hard to get a good pic, I spose a fly, but how often was that wrong…:

Another sand wasp, I think, on suneye:

A “hole-dwelling bee” (not a sweat or leaf-cutter bee) on a suneye:

Drone fly, in German ‘dung bee’, on oregano:

One of the ant flying days, preparing again, only takes an hour or two. Haven’t found out yet whether the big ones are queen ants and the smaller the males, but I guess so:

Brown house moth, good to know who lives with us:

Beauty and the beast? - for me two beauties each of their own, a harvestman on a fairy bellflower:

LDN: Decrease Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg. After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. Jun 20th-Jul11th 1.5mg ✅ 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. Jun 19th 3mg. Jun 20th-Jul 11th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/5 (❌) - 16:50 shattered from talking with one of my best friends for 15’, last time 1h was possible., music 5-30', depending ➔ 80%/3-4 (❌), white lips 70-80% (❌), 17:22 TT was 1:1 after all, I played well, once I started moving, my pain started going down a bit, stiffness and energy wasn’t there, but not gone, I could react fairly quickly, several things were working, but still very knackered, so better just 2 games, altho both fairly easy, 1st game close (moving/talking/counting 15%) (✅), moving ➔ 80%/3-4 (❌), balance (❌), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (❌), stiffness (❌), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 8h49 (40' deep doze) ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 8h49, 40'? deep doze ✅, QCS at 6:40 QCS = very quick very cold shower (22 issues under control).

Sleep 23:30-8:54 13+4+4+11+3’, 40’? deep doze. Sum: h30+8h54-(x5’=)’ = 9h24-35’ = 8h49.
23:30 bed after back
-01:40 13’, 1:53 heard it raining, remembered cardboard boxes outside, so got them in. Lightning even.
4:54 4’ 2nd, maybe cos I did have screen curfew at around 20:00, only looked at pics a bit with my wife, and only 15’ identifying. Blackcap
6:24 4’ hardly pee urge, slept good: LDN or screen curfew?
6:39-48 QCS after 10’ doze. Dry throat. Ear plugs, eye mask now. 74.2kg. 5th? day of GABA 1.5mg. Windows closed + polugs
7:19 bellyache, maybe from GABA, trying to doze further.
7:20 rubbish bins being emptied soon.
-8:54 did manage to sleep long, despite the bin emptying. If I press in ear plugs deep enough, I only feel the vibration from the lorries.

2) Watching TRIGGERS, esp. of exhaustibility. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst, and still not "fully" recovered ('20%'). 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 (✅). 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-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): Creatine 5mg July 3rd- helped overcome the flare, Creapure is the right form, malate has too little evidence. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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: Creatine 5mg July 3rd- helped overcome the flare, Masterjohn recommends that and Creapure is the right form, malate has too little evidence. 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. 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:
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

b) Birds (new order July 14th):
*Every day: Woodpigeons , Great Tits & BlueTits , Magpies 2-3 , Wren , Chiffchaff . All the rest (directly) above: Swifts 20 Jacks 300 to roost (1-2 in garden) , Crows 2-!6 . The others/rest quiet, occasionally visible: blackbird () Robins () Sparrows () bathing 4x/d .
*Latest / earliest robin or blackbird song: Late 0, early 4:34
(Regular cheer, song/calls/seen: often Chaffinch , Great Woodpeckers I think , song thrushes nearby 0, Dunnocks 0, Nuthatches 0.
12:22 Great Woodpecker “chip”ping in the background, or is it the GreatTits again, could be both
12:30 Chiffchaff on speed, singing very fast
13:01 first a ?carder?? sound, then a chiffchaff calling, not singing
04:56 taped dawn chorus: blackcap? before, def. Wren, swifts at 5:00.

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats () Bank vole(s) (). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .
Guinea pig is gaining more and more mate, doesn’t need mush any more, manages to eat quickly, to take things securely, not always by himself, but ‘buffet sticks’ like I’d tried before and had to give up again.

e) Human life: (TT laughter Skip-Bo Wife Music ())
16:50 one of my best friends came by.
f) Environment: (outdoors/fresh air .)
Nice but quiet lightning storm at night.
g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().)

Simplified:

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-16 Tuesday

Summary:

• LDN: Better increase LDN back to 1.5mg. See if lumbrokinase changes anything. Remember NAC sometime. If 1.5mg doesn’t keep working, maybe some kind of alternation? Jul 18th- 1.5mg (16th: 0.75, better increase again.) Jul 14th-17th 0.75mg Jun 20th-Jul11th 1.5mg () for usable energy = 14% (), energy profile from ‘very slow’ more to ‘slow’ /(), TT TT 0:2, hurting , jackknives (), walking / cycling 20’ ().
• Triggers: 5:59 Bite under right thigh itching. Peanuts OK. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. July 17th: Still more setbacks than progress.
• Creatine 5mg from 3rd on helped improve a bit.
• Last focal seizure: Jun 29th (2) (+9d ).
• Losing balance at night.
• Sleep: Screen curfew OK-ish , bed earlier . QCS at 3:40 .
• Fresh air: 20h .
• Thoughts: -
• Feelings: -
• Cheer: Appreciating the many little things… Wren and crows (overhead) near.

Pic(k)s of the Day

= expanding happiness

Squirrel story 1 Yummy, nice evening meal

Squirrel story 2 What’s that?

Squirrel story 3 Up higher to check out what’s up…

Squirrel story 4 … and back down

Squirrel story 5 Watch it!

Squirrel story 6 So if you don’t get lost…

Squirrel story 7 Then what?

Squirrel story 8 Then you’re gonna get a good LICKING

Squirrel story 9 Off with ya, and stay…

Squirrel story 10 Yumm, can’t a squirrel have a bit of peace?

Or… just wanting a bit of contact?

Woodpigeon nest not taken after all

Woodpigeon preening intimately with self in rain

Marmalade fly over rough hawksbeard

Western honeybee on fairy bellflower Alba

Long hoverfly (thought it was a marmalade fly at first, but saw the moustache is missing:

Nephrotoma flavipalpis cranefly:

White-tailed bumblebee on Oregano:

Helophilus pendulus hover fly:

Ichneumonid wasp:

Onesia blowfly:

LDN: Decrease Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg. After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. Jun 20th-Jul 13th 1.5mg ✅ 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. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/4 (❌), music 5-30', depending ➔ 80%/3-4 (❌), white lips 70-80% (❌), 13:14 TT 0:2 had to break off after 2 games, mate offered a break, but couldn’t recover. So better increase LDN to 1.5mg. 13:59 Knackered, hurting (moving/talking/counting 15%) ❌, moving ➔ 80%/3-4 (❌), balance (❌), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (❌), stiffness (❌), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 8h04 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 8h04, all deep ✅, QCS at 3:40 QCS = very quick very cold shower (22 issues under control).

Sleep 22:35-7:13 4+3+22+5’, 0 deep doze. Sum: 1h25+7h13-(x5’=)’ = 8h38-34’ = 8h04.
22:35, screen curfew 20:30+15’ OK-ish.
23:57 4’
1:45 3’
3:18-40 22’, first 4’, then 3:26 hanging for unrest and -3:38 QCS, took quite a time to get back to sleep.
5:59 5’ woke to craw of crow. Bite under right thigh itching, oils on it, closing windows, trying to continue.
-7:13 quite OK sleep now, didn’t take as long to get back to sleep, despite itch. Fell backwards, lost balance. Belly-ache, praps cos almond milk off. Slightly lost balance again, again fell backwards.

2) Watching TRIGGERS, esp. of exhaustibility. 13:59 8 half-peanuts, but remembered I had short tongue burning the night before, left, then right. 6:00 Bite under right thigh itching, oils on it helped. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst, and still not "fully" recovered ('20%'). 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 (✅). 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-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): Creatine 5mg July 3rd- helped overcome the flare, Creapure is the right form, malate has too little evidence. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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: Creatine 5mg July 3rd- helped overcome the flare, Masterjohn recommends that and Creapure is the right form, malate has too little evidence. 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. 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:
15:47 cried cos wife moody, but hid it, maybe should have said something. 22:16 conflict after similar. She does like today sometimes say I’m a burden for her. But not usually. And remembers what a help I am for her, like with the guinea pig.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

b) Birds (new order July 14th):
*Every day: Woodpigeons , Great Tits & BlueTits , Magpies 2-3 , Wren , Chiffchaff . All the rest (directly) above: Swifts 20 Jacks 300 to roost (1-2 in garden) , Crows 2-!6 . The others/rest quiet, occasionally visible: blackbird () Robins (0) Sparrows (0) bathing 0x/d!
*Latest / earliest robin or blackbird song: Late 0, early 4:34
(Regular cheer, song/calls/seen: often Chaffinch , Great Woodpeckers 0, song thrushes nearby 0, Dunnocks 0, Nuthatches 0.
9:27 wren singing
15:47 young wren near again, camera not near enough. And again 2h later.
19:33 2 crows flew over fairly close, 1 looked as if moulting too, lighter underneath.

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats () Bank vole(s) (). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .

e) Human life: (TT laughter () Skip-Bo wasn’t fun Wife Music (0))
f) Environment: (outdoors/fresh air .)
g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().)

Simplified:

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-17 Wednesday

Summary:

• LDN Jul 18th- 1.5mg Jul 14th-17th 0.75mg Jun 20th-Jul11th 1.5mg () for usable energy = 14% (), energy profile from ‘very slow’ more to ‘slow’ /(), TT 3:0 (), jackknives (), walking / cycling 20’ ().
• Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. July 17th: Still more setbacks than progress.
• Severe vertigo attack, anti-clockwise after lying down in a TT break. 3:26 balance off, strongest getting up and lying down, falling to right.
• Creatine 5mg from 3rd on helped improve a bit.
• Lumbrokinase at 3 & 8 starting today.
• Last focal seizure: Jun 29th (2) (+9d ).
• Sleep: Screen curfew late , late bed cos of: blog, pigs '‘. QCS at 10:00 .
• Fresh air: 20h .
• Thoughts: -
• Feelings: -
• Cheer: Appreciating the many little things… Great and Green woodpecker

Pic(k)s of the Day

= expanding happiness
Clouds:

Guinea pig veggie stick buffet:

Tradescantia, “threemaster” - less this year…:

Jackdaw on roof:

Swift in evening sun:

Sicus ferrugineus, a new fly, on golden ragwort:

Marmalade fly on oleander:

Banded snail, haven’t seen any around lately:

LDN: Decrease Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg. After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. Jun 20th-Jul 13th 1.5mg ✅ 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. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 80%/4 (❌), music 5' ➔ 80%/3 (✅), white lips 70-80% (❌), TT 3:0 (moving/talking/counting 15%) (✅), moving ➔ 80%/3-4 (❌), balance (❌), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (❌), stiffness (❌), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 9h24 ✅ ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 9h24, some deep dozing ✅, QCS at 10:00 QCS = very quick very cold shower (22 issues under control).

Sleep 22:50-8:33 6+5+4+4’, some deep doze. Sum: 1h10+8h33-(x5’=)19’ = 9h43-19’ = 9h24.
22:50- x
0:53 6’ A3
3:26 5’ balance off, strongest getting up and lying down, falling to right. Bite itchy. Toppled to right again
4:40 4’ Blackbird song
6:15 4’ woken up by broken manhole cover.
-8:33 seemed like dozing, so many realistic dreams tho about what I want to get done in the garden, people I used to know.

2) Watching TRIGGERS, esp. of exhaustibility. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst, and still not "fully" recovered ('20%'). 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 (✅). 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-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): 16:13 Severe vertigo attack, anti-clockwise, after lying down in a TT break. Walked 100m before I felt safe enough to cycle. Lumbrokinase at 3 & 8 from today on. Creatine 5mg July 3rd- helped overcome the flare, Creapure is the right form, malate has too little evidence. Re-ordering silymarin Jun 24th: praps anti-infl., anti-ox., praps praps detox (cf. Iberogast) & lipids). Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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: Creatine 5mg July 3rd- helped overcome the flare, Masterjohn recommends that and Creapure is the right form, malate has too little evidence. 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. 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:
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

b) Birds (new order July 14th):
*Every day: Woodpigeons , Great Tits & BlueTits , Magpies 2-3 , Wren , Chiffchaff (). All the rest (directly) above: Swifts 20 Jacks 300 to roost (1-2 in garden) , Crows 2-!6 . The others/rest quiet, occasionally visible: blackbird () Robins 0 Sparrows 0 bathing 0.
*Latest / earliest robin or blackbird song: Late 0, early 4:34
(Regular cheer, song/calls/seen: often Chaffinch , Great Woodpeckers , song thrushes nearby 0, Dunnocks 0, Nuthatches 0.
7:38 Great Woodpecker ‘chip’.
7:46 Wren family around, magpie further.
10:05 Young Woodpigeon begging.
10:10 Chiffchaff cheep call.
16:13 Chiffchaff (‘chiffchiff’), chaffinch, peregrine, blackcap.
19:45 Young wren near again in front of veranda.
21:35 Green woodpecker . 20+ swifts. Blackbird scolding time.
4:40 4’ Blackbird song, recorded

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats () Bank vole(s) (). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .
Guinea pig squeaked for mush, cos I hadn’t given it a few days, cos it didn’t seem nec.

e) Human life: (TT laughter Skip-Bo Wife Music ())
f) Environment: (outdoors/fresh air .)
g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().)

Simplified:

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-18 Thursday

Summary:

• LDN Jul 18th- 1.5mg Jul 14th-17th 0.75mg Jun 20th-Jul11th 1.5mg () for usable energy = 14% (), energy profile from ‘very slow’ more to ‘slow’ /(), TT 4:0 , jackknives (), walking / cycling 20’ (). Let’s see if it’s the 1.5 LDN or sleeping longer or both if I improve.
• Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. July 17th: Still more setbacks than progress. BP normal 10:28 136/81-65 after vertigo yesterday and last night. Bite better .
• Creatine 5mg from 3rd on helped improve a bit. Lumbrokinase Jul 17th- at 3 & 8.
• Last focal seizure: Jun 29th (2) (+9d ).
• Sleep: Screen curfew 20:30 , late bed cos of: wife (holidays – gotta sort that out) '‘. QCS 6:50 didn’t work (too late).
• Fresh air: 20h .
• Thoughts: Focusing on phone in shop helps me, my wife scolds me for that looking ‘autist’, altho I’m not, but I have to sort it out with her that this like for an autist helps me cope with overstimulation.
• Feelings: -
• Cheer: Appreciating the many little things… Heard blackcap, goldfinch, great and green woodpecker

Pic(k)s of the Day

= expanding happiness

Oleander:

Artemisia and great willowherb:

Hazel-leaf sparkling in sun:

Wing peeking under hazel-leaf:

That wing under the hazel-leaf was a boxwood moth - nice and dangerous for my boxwoods, so I need watch out:

Blue tit:

Our young woopigeon:

Small squirrel climbing in the cherry:

Green-veined white on grass:

Yellow underwing caterpillar:

Meadow grass moth, Crambus lathoniellus (not a grass-veneer):

Nowickia ferox fly:

LDN: Decrease Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg. After July 3rd recovering from the 4 doc appts (talks) a bit, the reduction Jun 20th- to 1.5mg has not only improved sleep, lighter/easier movements, I can slowly use the felt energy a bit more. Jun 20th-Jul 13th 1.5mg ✅ 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. Jun 19th 3mg. Jun 20th-Jul 13th 1.5mg. Jul 14th-17th 0.75mg only worked a day or 2, so Jul 18th- 1.5mg.
Additives: white capsules with TiO2 (HPMC with SiO2).

BP normal 10:28 136/81-65 (considering the buttons on the gadget hardly work any more, so it’s a heck of an effort to press them)
TT 4:0 effortless, 0 pain, brain OK too, as I keep relaxing it quick.

1) MAIN ISSUES: BP normal 10:28 136/81-65. Talking 10' ➔ 80%/4 (❌), music 5-30', depending ➔ 80%/3-4 (❌), white lips 70-80% (❌), TT 4:0 effortless, 0 pain, brain OK too, as I keep relaxing it quick (moving/talking/counting 20%) (✅), moving ➔ 80%/3-4 (❌), balance (❌), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (❌), stiffness (❌), exhaustibility theoretically ’70%‘ ✅ / actually 86% ❌ and sleep 6h54, deep, plus 35' deep doze (✅) ('PPA‘: 2 ✅). Energy profile: since decreasing LDN from 'very slow‘ to 'very slow'/'slow', since recovering from doc appts (talks) July 3rd with '7h rest‘, 3h very slow, 6h 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): 6h54, deep, plus 35' deep doze (✅), QCS at 6:50 QCS = very quick very cold shower (22 issues under control).

Sleep 23:22-6:41 13+4+3+5, +35’ deep doze. Sum: h38+6h41-(x5’=)25’ = 7h19-25’ = 6h54.
23:22 late cos wife, A3+apigenin
0:45-58 q6!
2:17 4’
3:40 3’
5:06 5’ wren, tape garden
6:41 20’ lumbrokinase, 1.5h tape, qcs cos not deep? 6:51 QCS 7:00 bite less. Council workers, plugs deep. Small spot of fungus from wife, so tea tree oil.
7:28 after only dozing 30’

2) Watching TRIGGERS, esp. of exhaustibility. Bite better ✅. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst, and still not "fully" recovered ('20%'). 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 (✅). 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-July 3rd) doc appts (talks). May 29th (9d), Jun 7th & 10th (3 weeks) & 28th () not helping.
(Jun 29th-July 3rd) 1 of 5 bites played up ().
(July 3rd, added July 8th) slowly better from very slow to more slow.

(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 (✅)): Lumbrokinase Jul 17th- at 3 & 8 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Last seizure Jun 29th (2) (+9d ✅). Last esophagus block May 7th ✅ (7m!) ✅. Carnitine Apr 14th-, EGCg Apr 13th-. LDN: see separately (Jun 21st). Click for latest (Jul 8th) & next changes...

Creatine Apr 9th-Jun 9th 2x5g gave slightly more (slow) energy, but less than LDN. Jun ~10th creatine down to 1x2mg (cos it said that on the tub). Back up to 5mg Jul 3rd- helped overcome the doc appt (talk) flare.
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 / 9 (Jun 29th 2024). Stress, histamine & less GABA. JUN 29th (+9d) 20th (+15d) (23:19 rabbit hole) 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. Lumbrokinase Jul 17th- at 3 & 8 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. 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: Lumbrokinase Jul 17th- at 3 & 8 (plaque, lipids). Silymarin Jul 12th (anti-infl., anti-ox., detox & lipids, see 'research' Jun 22nd). Creatine as Creapure 5mg July 3rd- ✅ - helped overcome the flare, Masterjohn recommends that and Creapure is the right form, malate has too little evidence. Carnitine Apr 14th-, EGCg Apr 13th-. LDN see separately. Mar 19th- creatine monohydrate 2g, then 5g before morning meal. 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:
17:00 in shop focusing on my phone ‘like an autist’ helps me, altho it makes my wife mad, so I’ll have to try to explain that. Like next time she wants to come with me, I’ll ask before if I may use the phone to distract/focus. Energy OK, but tenseness high, so I took just as long altho I had more energy. Relaxing again and again every 1-2 minutes.

Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)

b) Birds (new order July 14th):
*Every day: Woodpigeons , Great Tits & BlueTits , Magpies 2-3 , Wren , Chiffchaff . All the rest (directly) above: Swifts 20 Jacks 300 to roost (1-2 in garden) , Crows 2 . The others/rest quiet, occasionally visible: blackbird () Robins (0) Sparrows (0) bathing 0x/d (why??).
Latest / earliest song: Wren early 5:05, no blackbird or robin:
(Regular cheer, song/calls/seen: often Chaffinch , Great Woodpeckers 0, song thrushes nearby 0, Dunnocks 0, Nuthatches 0.

• 12:56 blackcap singing 5 bursts in the park east at TT
• 16:45 Goldfinch at shop. Chaffinch too.
• 19:02 GreatTits around quite a bit today, even tho or cos I had bird sounds on a bit.
• 21:15 Sound like a green woodpecker (next days again occasionally).
• 21:34 young woodpigeon, blackbird bed calling (‘scolding’)(& at 21:53), still swifts.

c) Animals: (guinea pig antics . Redbrown squirrel in cornel cherry )
Bats () Bank vole(s) (). Insects: bees/wasps, flies, butterflies, bugs, spiders . Snails & slugs less .

• 12:08 Tiny yellow ladybird, probably Asian
• 12:08 big dragonfly in the park east.
• 21:53 Big brown bat

e) Human life: (TT laughter Skip-Bo Wife Music 0)
14:11 Trying to get a supp in a capsule didn’t work, had to laugh when I saw I hadn’t opened the capsule yet.

f) Environment: (outdoors/fresh air .)
g) Body: (“Theoretical” energy 30% ().)

Foggies: (Body (). Brain ().)

Simplified:
Setting birdsong I want to learn as an alarm reminder.

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

• 8 weeks after jab#3: stabilized
• 1st Jab-sfx-summary, last edit: Feb 7th.
• My food 2023.
• My blog references, e.g. abbreviations, supp chart/overview
• My “How to symptom track & trigger hunt”

[JayCS]

2024-07-19 Friday

Summary:

• LDN Jul 18th- 1.5mg Jul 14th-17th 0.75mg Jun 20th-Jul11th 1.5mg () for usable energy = 15% (), energy profile from ‘very slow’ more to ‘slow’ /(), TT 3:0 easy (2nd mate) (), jackknives (), walking / cycling 20’ (). * 11:25 feeling OK, managed grass.
  16:25 still OK, altho indoors. 20:22 lake quite OK, lots of pauses. Shaving knackered me completely despite starting with energy. I feel energy when I don’t do anything.
• Triggers: Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. July 17th: Still more setbacks than progress.
• Creatine 5mg from 3rd on helped improve a bit. Lumbrokinase Jul 17th- at 3 & 8.
• Last focal seizure: Jun 29th (2) (+9d ).
• Sleep: Screen curfew late , late bed cos of: wife phoning '‘. QCS at 10:00 .
• Fresh air: 20h .
• Thoughts: -
• Feelings: -
• Cheer: Appreciating the many little things…

Pic(k)s of the Day

= expanding happiness

At our lake:

Sneezing young duck:

Young moorhen:

Ducklings:

Different coloured mallards, praps hybrid with house ducks:

In and around our garden:
One of countless swift pics started the day:

Pearl grass-veneer seeming to “hang in the air”:

The 3 young woodpigeons eating berries together, flapping their wings beautifully:

Jack(daw)s pre-gathering to roost: