2024-08-14 Wednesday
Summary:
- LDN Jul 18th- 1.5mg (
) for usable energy = 15% (
), energy profile between ‘very slow’ and ‘slow’ /(), no TT cos of tooth cleaning (), jackknives (), walking / cycling 20’ (). - Triggers: Tooth cleaning today Aug 14th causing sinus headache and some nimbleness and drive despite exhaustion via histamine. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst. July 28th: Slightly more progress than setbacks.
- Creatine 5g July 3rd-. Lumbrokinase Jul 17th- at 8:00 and Aug 3rd- 13:00.
- Last focal seizure: Jul 29th (+30d! ).
- Sleep: Screen curfew late , late bed cos of: wife, photos, pigs '‘. QCS at 10:00 .
- Fresh air: 20h .
- Thoughts: -
- Feelings: -
- Cheer: Appreciating the many little things… To allotments, but only dragonfly.
Need to take extra SD cards with me, esp. if I take cRAW-pix as well as
Pic(k)s of the Day
= expanding happiness
Beautiful “wasteland” trees
And there I did catch another emperor dragonfly in flight, but still doesn’t touch my first good one
Garden impressions: the horse mint has really come out well due to the slugs eating up some of the oxeyes, which is bringing loads of honey and other bees, often I can see >10 at once.
Leopard slug in composter
I really wanna know what kind of a fly this is sposed to be on the fairy bellflower Alba
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 5' ➔ 80%/4 ❌, music 5' ➔ 80%/4 ❌, white lips 70-80% (❌), 8:05 feel slow, so better no TT before tooth cleaning (❌), moving ➔ 80%/3-4 (❌), balance (❌), body fog (❌), jackknives (✅), SO post exertional malaise (❌), 'post postural ache‘, 'PPA‘‚ (❌), stiffness (❌), tense/jittery (❌), exhaustibility theoretically ’70%‘ ✅ / actually 85% ❌ and sleep 8h18 ✅ ('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): 8h18, all deep ✅, QCS at :00 QCS = very quick very cold shower (22 issues under control).
Sleep 22:35-7:10 x5’, 0 deep doze. Sum: 1h25+7h10-(5+4+4+4’=)’ = 8h35-17’ = 8h18.
22:35 bed. Went out in the eve, so I could do the pigs earlier, ate late tho, so had to delay bed a bit. A3 a bit late
1:28 5’. hard but 0q6
3:16 4’ feel like not getting up, but stomach pain, praps GABA? So almond milk. T-shirt, no long trousers, 1p of sox, OK.
5:17 4’
6:03 4’
7:10 up, tired, but must be 8h.
2) Watching TRIGGERS, esp. of exhaustibility. 11:39 tooth cleaning first part 40’ (2nd part tomorrow): talking, noise hard, but ultrasonic worst, and gotta see if I tolerate the surface anaesthetic. Don’t feel heavy, but still can’t move, like in trance, feel as if moving too much would cause problems, so shuffling, cycling and thinking very slowly. (histamine?) 11:41 didn’t think I should try to go up the stairs yet. 13:21 slight pee pain, exhaustion, hardly able to move, 2 buckets up cellar steps wasn’t the problem, just moving and balance. 13:25 kind of flu feeling, light not heavy, but still can’t move: histamine… 13:30 joints totally nimble e.g. coming downstairs, very hard to explain. Flare May 29th-July 3rd from strain of 4 doc appts (talks), Jun 7th and 10th worst, and still not "fully" recovered by Aug 2nd ('20%'), had to delay tooth cleaning to Aug 15th. 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 26th) 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 (✅)): 13:24 often thirsty and hungry now, since starting magnesium threonate actually, wife believes that's good cos I then eat and drink more, but I don't necessarily, it's just it hurts. Lumbrokinase Aug 3rd- 8:00 & 13:00 (Jul 17th-). Silymarin Jul 12th- (anti-infl., anti-ox., detox & lipids). Creatine as Creapure 5mg July 3rd- ✅. Last seizure Jul 29th (+30d ✅✅). Last esophagus block Aug 7th, Jun 25th, 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 / 30 (Jul 29th 2024). Stress, histamine & less GABA. JUL 29th (+30d) 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: Aug 7th, 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 Aug 3rd- 8:00 & 13:00, cos my gut didn't take Jul 17th- at 3:00 & 8:00 too well (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, Aug 3rd- 8:00 & 13:00 (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:
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
b) Birds (Aug 11th: removed cos never/rare to see/hear: wren, swifts, song thrush, dunnock, nuthatch, goldfinch, chiffchaff):
Every day: Woodpigeons , Great & BlueTits , Magpies 2 . All the rest (directly) above: Jacks 1000 to roost , Crows 2-6 . The others/rest quiet, occasionally visible: blackbird () Robins () Sparrows () bathing 0-2x/d.
Latest / earliest song: Late 0, early 0.
(Regular cheer, song/calls/seen: often short-toed tree creeper , Chaffinch (), sometimes green or great Woodpecker 0.
- 8:13 robin scolding, (young) blackbird warning, moved, louder, only wanted to take a pic, 2 warning, so 1 young, 1 parent. 8:33 young blackbird on garden shed.
- 11:51 GreatTits calling in the background fairly near in neighbour’s garden, fairly loud.
- 14:25 think robin visited me, but didn’t see him, flurried to composter when I moved, chuck-chucking.
- 14:35 tree creeper around 1x/h, greatTits too.
- Allotments: screech, praps green woodpecker, cos afterwards there was one.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bats () Bank vole(s) (). Insects: bees/wasps, flies, butterflies, bugs, spiders, crickets . Snails & slugs less .
19:48 just taped and a dragonfly noise behind me might be on it (isn’t, only 1 pic moderate pic of it). (Taping if with phone in my pocket makes loud noises at the slightest movement.)
e) Human life: (TT laughter Skip-Bo Wife Music ())
f) Environment: (outdoors/fresh air .) gushing of rain in the evening, so down 14 buckets, pouring like heck,
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain (). Jittery ())
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