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2024-04-06 Saturday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg
: Energy 30% , partly usable = 17% (
), energy profile “very slow”, TT not available, jackknives , walking / cycling 40’ () - due to the creatine. - Creatine monohydrate Mar 19th- 2g, 6th: 2g and 5g seemed good.
- Triggers: (Tooth treatment )
- Cheer: Visited the local Gardens, heat letting things grow and blossom.
- Self-care: Not worrying much about lost wallet, but not helping mood. Deep sleep good, meant taking 1g of GABA in the morning…
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/3-4 ❌, music 5' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT not available, moving ➔ 80%/3-4 (❌), jackknives ✅ SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "83%" ❌ and sleep 8h42 ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 8h42, all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:15-8:07 2x5’, 0 deep doze. Sum: h45+8h07-(2x5’=)10’ = 8h52-10’ = 8h42. First pill at 3 (loud neighbours on balcony.)
2) Watching TRIGGERS, esp. of exhaustibility. Apr 2nd: Last 3 focal seizures were slight & during TT. Apr 2nd: Better sleep 2x, seems from earlier sun? Histamine foods: 30g goat cheese (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Mar 19th online dermatologist: he thought wart - I don't, yet, treating with tea tree oil - on a probably genetic enlargement under toenail. Click for latest (Feb 2nd) details.)
DERM (Mar 19th) wart?
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): LDN Mar 21st- 3mg, creatine Mar 19th- 2g. Seizures Apr 2nd (1), Mar 28th (1), 20th (1) & 2nd (2), Feb 19th (1), 14th (1) & 3rd (1). Click for latest (Mar 21st) & next changes...
Latest: 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 esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec) to 4-weekly (before May, July-Sept). Increases from stress, histamine, and less GABA. Apr 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary Mar 21st- LDN 3mg, Mar 19th- creatine 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). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Lessons in self-care:
a) Lost wallet with documents, I think it was stolen, but at least no bank card, so not worrying much.
b) Deep sleep?: sun all day, insect bite in the evening wasn’t fully developed (forgot to treat it). Had to take 1g of GABA in the morning, hope that’s OK.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
Building site nearby now with a few natural stones I could use for the garden.
Visited the local Gardens - lots of lizards, grey-dark squirrel and blackcap.
Carried on with mini pond.
a) Plants: (Newest blossoms)
Heat letting things grow and blossom, esp. cherry.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: 21:00 (1 in the park continued after) / no idea when they started, not at 3)
(Regular cheer, song/calls/seen: Chaffinch Chiffchaff)
bb) Specials seen in garden/balcony: Blackbird & robin bathing.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bats Bank vole
This time 2 big bats & 1 small, a red-rimmed bumble bee, 2 small bank voles sweet under the feeding bowl at night, and 1 bigger red one between the stones in the morning.
e) Human life: (Skip-Bo Wife ) My article about my garden will be published on Sunday. Nice to be out with wife.
f) Environment: (Outdoors .)
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
2024-04-07 Sunday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 16% (), energy profile “very slow”, TT 3:1, jackknives , walking / cycling 40’ () - due to the creatine.
- Creatine monohydrate Mar 19th- 2g, 6th: 2g and 5g seemed good, 7th 5g made 3:1 easier.
- Triggers: (Tooth treatment )
- Cheer: The Grand-/Kids. Blackcap now in our own garden, close! Redstart?? Grey heron. Enormous “rat” turned out to be…
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/3-4 ❌, music 15' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 3:1 due to 5g creatine before 1st meal - lost energy towards the end, moving ➔ 80%/3-4 (❌), jackknives ✅ SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "84%" ❌ and sleep 8h01 ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 8h01, all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:15-8:01 25+4x5’, 0 deep doze. Sum: h45+8h01-(25+4x5’=)45’ = 8h46-45’ = 8h01. 0:20 5’ 1:25 25’ 3:30 5’ (no robin) 5:10 5’ 1+2 robins, incl. mine, 1 blackbird, no others. 6:45 5’ robins GreatTits, sparrows, not my blackbird, BlueTits, woodpigeons. -8:01 Blackbird sitting in tree opposite, see if he sings? Nope, gone.
2) Watching TRIGGERS, esp. of exhaustibility. Apr 2nd: Last 3 focal seizures were slight & during TT. Apr 2nd: Better sleep 2x, seems from earlier sun? Histamine foods: 30g goat cheese (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Apr 7th: "Wart" seems gone, another scabby bit on right big toe is almost gone, so only the chronic small nailbed inflammation that I treat with Calendula essence almost every day. Mar 19th online dermatologist: he thought wart - I don't, yet, treating with tea tree oil - on a probably genetic enlargement under toenail. Click for latest (Feb 2nd) details.)
DERM (Mar 19th) wart?
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): LDN Mar 21st- 3mg, creatine Mar 19th- 2g/5g. Seizures Apr 2nd (1), Mar 28th (1), 20th (1) & 2nd (2), Feb 19th (1), 14th (1) & 3rd (1). Click for latest (Mar 21st) & next changes...
Latest: 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 esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec) to 4-weekly (before May, July-Sept). Increases from stress, histamine, and less GABA. Apr 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary Mar 21st- LDN 3mg, Mar 19th- creatine 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). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Lessons in self-care:
Still not worrying about wallet.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
Woodpigeon & squirrel walking around in the garden, pecking in the grass.
Carried on with mini pond.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: 21:00 / 5:00 (not 3:30))
(Regular cheer, song/calls/seen: Chaffinch Chiffchaff)
bb) Specials seen in garden/balcony: First blackcap now in our own garden, close, I could record him in full and subsong and take a pic in our magnolia! Nuthatch (pretty sure) in and around feeding box. GreatTit seemingly feeding baby. Redstart on pavilion? Male darker redorange belly than a robin, brown, white stripes. House sparrow pecking close, in boxwood.
bc) Seen above: Grey heron.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bank vole . Enormous “rat” eating horn filings turned out to be a young hedgehog, cute, and didn’t mind being filmed in spotlight…
e) Human life: (Skip-Bo Wife ) My article about my wild garden published, somehow a bit embarrassing. Nice to be out with The Grand-/Kids.
f) Environment: (Outdoors .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body . Brain - losing it a bit recently ().)
Simplified:
a) Less strain on arms while blowing drying by bending over and resting my elbows on my knees, at the same time hair in better shape.
b) Guinea pig now often manages to use one box for pee, one for sleep.
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
2024-04-08 Monday
Summary:
- (3-)4 seizures, & fell to the side 2x.
- Very brain and body foggy, “10%-30%”
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 15% (), energy profile “very slow”, TT 1:2 (or 1:3), 4th seizure in 2nd game , jackknives , walking / cycling 10’ ().
- Creatine monohydrate Mar 19th- 2g, 6th: 2g and 5g seemed good.
- Triggers: (Tooth treatment ) Food: Specks of Marmite burnt tongue a little.
- Cheer: Improved binocular use. Sparrowhawk? (or jay)
- Self-care: Had to take lots of breaks of course when we met with the Kids. Overwhelmed today from trying to do several things, can’t talk well, seizures. So did today come from yesterday?
- Weight: 74.5kg - so still OK-ish, still down rather than back.
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 1:2 (or 1:3), 4th seizure in 2nd game (moving 10%, talking 10%, counting 20%) ❌, moving ➔ 80%/3-5 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually ?"85%" ❌ and sleep ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): , all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:00-: x5’, 0 deep doze. Sum: h+h-(x5’=)’ = h-’ = h.
Robins? 3:35 5’ nice air, no birds, 5:25 5’ again, robin + 2, no blackbird slightly histaminey sinuses. 7:35 woke up from rubbish men, bit troublesome thoughts, but very deep sleep, nostrils slightly stuffy, no full sinus headache, bit overheated, bit nauseous, slight sore throat, mainly firm stools as ever, but sort of firm and liquid/soft at the same time.
2) Watching TRIGGERS, esp. of exhaustibility. Apr 2nd: Last 3 focal seizures were slight & during TT. Apr 2nd: Better sleep 2x, seems from earlier sun? Histamine foods: 30g goat cheese, plus specks of Marmite burnt tongue a little (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): Seizures Apr 8th (1-2, +2) - that's 2 from trying multiple errands with brain fog, or was that fog the aura?, then another at 15:35, another at 17:24 during TT - this can't have been the creatine, cos that's anti-convulsive, but maybe I've been taking too much GABA with 5g so am reducing again back to how it was before I increased (cos I thought I needed to for the increased seizures, maybe the opposite), in the evening I fell to the side twice without feeling dizzy, Apr 2nd (1), Mar 28th (1), 20th (1) & 2nd (2), Feb 19th (1), 14th (1) & 3rd (1). LDN Mar 21st- 3mg, creatine Mar 19th- 2g. Click for latest (Mar 21st) & next changes...
Latest: 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 esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th, 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec) to 4-weekly (before May, July-Sept). Increases from stress, histamine, and less GABA. Apr 8th (1-2 slight from trying to combine 4 simple errands by bike with brain fog, or was that fog the aura? Confused me, a 3rd later), 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary Mar 21st- LDN 3mg, Mar 19th- creatine 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). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%.
This is sort of a measure of happiness too, and that’s often down a bit recently for an hour or so a day, like today newsletter article, work and something past.
Lessons in self-care: I need to break down what I do better.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
Learning to use the binoculars properly, never managed that before.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: 21:00 (1 in the park continued after) / no idea when they started, not at 3)
(Regular cheer, song/calls/seen: Chaffinch Chiffchaff)
ba) Special Song/Calls: Heard piuuu in the morning, the other day I heard that several times quick, that might be sparrowhawk, if it’s not a jay mimicking it…
bb) Specials seen in garden/balcony: Woodpigeon looking for nesting materials, then flying off diagonally to nest.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bats Bank vole . Interesting snail with older looking house.
e) Human life: (Skip-Bo Wife )
f) Environment: (Outdoors .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain .) Very foggy, “10%-30%”.
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
2024-04-09 Tuesday
Summary:
- Pain of 4-5 all day, feeling ill from less creatine and suddenly cold weather again (so creatine back up and GABA down).
- Body () & brain fog , 30%. And falling over again.
- Left thumb nail hurting - enormous dent, whole nail full of Beau lines, sort it out: deficiency? cream?
- Shop twice to reduce the load. Overheated with sore throat.
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 15% (), energy profile “very slow”, TT 1:2 or 0:3 , jackknives , walking / cycling 10’ ().
- Creatine monohydrate Mar 19th- 2g, 6th: 2g and 5g seemed good.
- Triggers: (Tooth treatment )
- Cheer:
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT TT 1:2 or 0:3 (moving 10%, talking 10%, counting 20%) ❌, moving ➔ 80%/3-5 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "85%" ❌ and sleep 7h30 ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 7h30, all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:20-7:35 x5’, 0 deep doze. Sum: h40+7h35-(x5’=)45’ = 8h15-45’ = 7h30.
-1:15 35’? 6 3:30 5’ 2 pills 0 birds 5:35 5’
Stools hard + liquid.
2) Watching TRIGGERS, esp. of exhaustibility. Apr 9th: What triggered the 3-4 seizures yesterday: GABA vs. creatine? Even the kids on Sunday is not reason enough. Apr 2nd: Last 3 focal seizures were slight & during TT. Apr 2nd: Better sleep 2x, seems from earlier sun? Histamine foods: 30g goat cheese (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): LDN Mar 21st- 3mg, creatine Mar 19th- 2g. Seizures Apr 8th (3-4) 2nd (1), Mar 28th (1), 20th (1) & 2nd (2), Feb 19th (1), 14th (1) & 3rd (1). Click for latest (Apr 8th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec) to 4-weekly (before May, July-Sept). Increases from stress, histamine, and less GABA. Apr 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary Mar 21st- LDN 3mg, Mar 19th- creatine 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). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
a) I haven’t been getting round to ‘research’ lately, except bits’n’bobs. Should I delete this line?
b) Here I collected my stuff for Beau lines and now copied it over to my notes: JayCS’s Fibro Blog - #1272 by JayCS. My summary then was wash less, but my thumb-tips are not hurting, and I have been careful not to wash too much and definitely to use my olive oil soap too. So is it calcium and/or zinc deficiency? I can’t imagine that.
Quality of life: 90%
Lessons in self-care:
Wife had to vent about her parents, I had to curb talking time.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: 21:00 (1 in the park continued after) / no idea when they started, not at 3)
(Regular cheer, song/calls/seen: Chaffinch Chiffchaff)
c) Animals: (guinea pig antics . Redbrown squirrel )
Bank vole scarpered up the deadwood-wall to the ivy: nest there?
e) Human life: (Skip-Bo Wife )
f) Environment: (Outdoors .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: Body () Brain , 30%.
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
2024-04-10 Wednesday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 15% (), energy profile “very slow”, TT 0:2 (brain hindered play), jackknives , walking / cycling 10’ ().
- Creatine monohydrate Apr 9th 2x5g Mar 19th- 2g, 6th: 2g and 5g seemed good, increased to 2x5g since reading it’s anti-convulsive.
- Triggers: (Tooth treatment )
- Nosebleed, haven’t had that for a time, so not worrying.
- Sleep good, despite no screen curfew - but lots of early sun.
- Bladder pain and frequency, since reducing GABA.
- Cheer: Baby magpie making such a noise! Blackbird bathing, then BlueTit feeding baby, then robin, all 2m close. Robin even closer 1m at fat ball. Red kite flying in front of the sun, as it left I could see the white windows under the wings. Guinea pig antics. Collared dove every day now - hearing, sometimes seeing, sometimes in park to the West.
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 0:2 - (brain hindered play) (moving 10%, talking 10%, counting 20%) ❌, moving ➔ 80%/3-5 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "85%" ❌ and sleep 8h10 - despite no screen curfew to get this blog up to date, but lots of early sun. ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 8h10, all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:35-7:55 2x5’, 0 deep doze. Sum: h25+7h55-(2x5’=)10’ = 8h20-10’ = 8h10.
Robins? 3:50 thirst, headache praps from thirst, itchy scalp, no robin, 2 brown pills. 5:45 robins & blackbirds, but not mine.
Up: frontal non-sinus headache, occipital, nose bit better after nosebleed, slight sore throat. Kept dreaming I just have to tidy up and will then find my wallet again, cos it’s there.
2) Watching TRIGGERS, esp. of exhaustibility. Apr 2nd: Last 3 focal seizures were slight & during TT. Apr 2nd: Better sleep 2x, seems from earlier sun? Histamine foods: 30g goat cheese (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): LDN Mar 21st- 3mg, creatine Mar 19th- 2g. Seizures Apr 8th (3-4) 2nd (1), Mar 28th (1), 20th (1) & 2nd (2), Feb 19th (1), 14th (1) & 3rd (1). Click for latest (Apr 8th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec) to 4-weekly (before May, July-Sept). Increases from stress, histamine, and less GABA. Apr 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary Mar 21st- LDN 3mg, Mar 19th- creatine 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). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) Lilac in full bloom, as it’s invasive here and has bitter nectar, I’ll be cutting it early for decoration.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: 21:00… (incl. mine) / )
(Regular cheer, song/calls/seen: Greenfinch Chaffinch Peregrine? Chiffchaff Wren Bullfinch)
ba) Special Song/Calls: Baby magpie making such a noise!
bb) Specials seen in garden/balcony: And young magpie easily to be seen too. Blackbird bathing … then BlueTit feeding baby, then robin, all 2m close. Robin even closer 1m at fat ball. Collared dove every day now - hearing, sometimes seeing, sometimes in park to the West, so I’ll put them under “regular”.
bc) Seen above: Red kite flying in front of the sun, as it left I could see the white windows under the wings!!
c) Animals: (guinea pig antics - 1 suddenly settled in my room, looked funny, like someone coming home from work and throwing themselves on the couch. Redbrown squirrel, and a darkred one )
Bank vole
e) Human life: (Skip-Bo Wife )
f) Environment: (Outdoors .)
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
2024-04-11 Thursday
Summary:
- I’m deteriorating, so high time to re-order a supp for MCAS I underestimated: EGCg, see Hoffman’s A-team.
- Research GABA-creatine-interaction: nothing helpful found, so I doubt that’s a problem.
- Still high pee frequency, urge, leak, pain bit better, suggesting a GABA problem - but too high or low?
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 12% (), energy profile “very slow”, TT 2:1 (), jackknives , walking / cycling 10’ (). Feel too weak to “drive 2 bikes” at the same time, that has never happened before.
- Creatine monohydrate Apr 9th 2x5g (Mar 19th- 2g, 6th: 2g and 5g).
- Triggers: (Tooth treatment )
- Cheer: Blackbird bathed in the 3rd then 2nd then 1st water bowl.
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 2:1 (moving 10%, talking 10%, counting 10%) (❌), moving ➔ 80%/3-5 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually ?"85%" ❌ and sleep 7h05, plus 40' doze/NSDR, FCS helped (✅) ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 7h45, 30' of that doze, 10' NSDR, FCS helped ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:25-7:55 5+20+10+5’+5’, +30’ deep doze + 10’ NSDR. Sum: h35+7h55-(x5’=)45’ = 8h30-45’ = 7h45-40’.
Robins? 0:45 no birds, cars. 2:05 6 20’ 2:55 neighbour problem kept me awake, 2 pills, NSDR, 3:05 NSDR no help for heart thumping, so FCS 10’, praps NSDR? no HWB. 4:10 5’ better. 2-3 robins singing on street. Lorry sounding horn on motorway in the middle of the night!? 6:05 dream that I’d find mahonia repens somewhere and take it home, Great&BlueTits, but no woodpigeons, my blackbird in the gardens. 6:10 Enemy from above call yesterday seemed to be to mean me cos I wasn’t sposed to know where the nest is. -7:55 by alarm (shouldn’t leave phone there if not nec.
2) Watching TRIGGERS, esp. of exhaustibility. Apr 8th: What caused 4 seizures? Apr 2nd: Last 3 focal seizures were slight & during TT. Apr 2nd: Better sleep 2x, seems from earlier sun? Histamine foods: 30g goat cheese (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): LDN Mar 21st- 3mg, creatine Mar 19th- 2g. Seizures Apr 8th (3-4) 2nd (1), Mar 28th (1), 20th (1) & 2nd (2), Feb 19th (1), 14th (1) & 3rd (1). Click for latest (Apr 8th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec) to 4-weekly (before May, July-Sept). Increases from stress, histamine, and less GABA. Apr 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary Mar 21st- LDN 3mg, Mar 19th- creatine 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). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
‘Research’ today
a) GABA-creatine-interaction: nothing helpful found, so I doubt that’s a problem.
b) EGCg. Hoffman: EGCg is the one in the A-team I’m missing, vit. C I’ve decreased to 3x1x0.6g/d = 1.8g cos of Masterjohn’s recommendations, sometimes only 1x1?, I could play around with that. Of the B-team I’ve delayed silymarin (Mariendistel), ellagic acid (Ellagsäure/Granatapfel) and feverfew (Mutterkraut).
Quality of life: 90%
Lessons in self-care:
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) Crisp tulip appearing. Placing lilac blossoms in front of the house, tomorrow with a note about them being invasive. Alum-root / rock-geranium (Purpurglöckchen) with tiny blossoms, garlic mustard too. I’m growing cannabis by mistake, cos some hemp seed I’d been given is sprouting.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: …22:30 (subsong, sounded like blackcap) / 4:00…
(Regular cheer, song/calls/seen: Chaffinch Chiffchaff Collared dove)
bb) Specials seen in garden/balcony: Garden robin (sounded a bit like blackcap) subsong at 22:30.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bats Bank vole , Loads of slugs on tulips.
e) Human life: (Skip-Bo Wife )
f) Environment: (Outdoors .)
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
2024-04-12 Friday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 15% (), energy profile “very slow”, TT 0:3 , jackknives , walking / cycling 10’ ().
- Creatine monohydrate Apr 9th- 2x5g seems right to continue (Mar 19th- 2g, 6th: 2g and 5g).
- Pains: Bladder problems better again from GABA. Muscular pain better again, but not sure if from cortisol from too little sleep. Some lower back unrest at night, 30’’ cold shower helped. Strained right groin tendon by bending too far back at night, needs exercising.
- Triggers: (Tooth treatment ) Tongue burning slightly from 150g baked beans without DAO.
- Cheer: magpie chattering at 1am! - What’s wrong? Grey heron again in the morning, low.
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 0:3 (2 games close, using little energy, so could have tried a 3rd, moving 10%, talking 10%, counting 10%) ❌, moving ➔ 80%/2-3 = better!, semi-strenuous garden stuff after TT possible - but not sure if from cortisol from too little sleep (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually ?"85%" ❌ and sleep 7h25 ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 7h25, all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 0:10-8:10 x5’, 0 deep doze. Sum: 8h10-h10-(4x5’+(5+) 10=)30’ = h-30’ = 7h25.
Robins? 1:00 5’ sleep OK, pee OK, magpie chattering! - what’s wrong? 2:25 tongue baked beans 150g, pee pain 0, difficulty getting up, 0-1 robin, cars. LBU, praps cos of 6b4slp. 3:45 forgot GABA in 1st break. Now 2nd & 2 brown pills. Out early didn’t help much wth slp or hasn’t, didn’t keep curfew… 1 street robin. 4:05- FCS cos of the LBU. -4:18 3rd GABA. 6:45 Strained right groin tendon by bending too far back at night, need to treat it. -8:10, sun at 8:45
2) Watching TRIGGERS, esp. of exhaustibility. Apr 8th: What caused 4 seizures? Apr 2nd: Last 3 focal seizures were slight & during TT. Apr 2nd: Better sleep 2x, seems from earlier sun? Histamine foods: 30g goat cheese, tongue slight from 150g baked beans (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): Bladder problems better again. Strained right groin tendon by bending too far back at night, but needs treating anyway. Some lower back unrest at night, FCS helped. LDN Mar 21st- 3mg, creatine Mar 19th- 2g. Seizures Apr 8th (3-4) 2nd (1), Mar 28th (1), 20th (1) & 2nd (2), Feb 19th (1), 14th (1) & 3rd (1). Click for latest (Apr 8th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec) to 4-weekly (before May, July-Sept). Increases from stress, histamine, and less GABA. Apr 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary Mar 21st- LDN 3mg, Mar 19th- creatine 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). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Lessons in self-care: Taking it slow.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms) My new app is saying where possibly goldenrod was last year is now fleabane (Erigeron annuus) - both invasive, so it doesn’t really matter, just I need to remove the flowers in time and keep watching.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks (actually been quite for a week or so, as opposed to all the others) Great&BlueTits Jacks ) Latest / earliest robin song: …21:00 / 3:45 1 street robin…
(Regular cheer, song/calls/seen: Chaffinch Chiffchaff Collared dove)
ba) Special Song/Calls: magpie chattering at 1:00! - what’s wrong?
bb) Specials seen in garden/balcony: GreatTits love looking for insects in the boxwood in front of me. Woodpigeon took place of squirrel in the feeding box, but squirrel won his counter-attack.
bc) Seen above: Grey heron very low, from behind surprisingly thick body, but checked it.
c) Animals: (guinea pig antics . Redbrown and other squirrel antics )
Bank vole around a lot . Snail.
e) Human life: (Skip-Bo Wife )
f) Environment: (Outdoors .)
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
2024-04-13 Saturday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 15% (), energy profile “very slow”, TT 0:4 - kept energy down, jackknives , walking / cycling 10’ ().
- Creatine monohydrate Apr 9th- 2x5g (Mar 19th- 2g, 6th: 2g and 5g).
- Sleep long and deep after a quick cold shower at 4:30, so I think I need to start the night with one again, or at least as soon as I get lower back unrest.
- Triggers: (Tooth treatment ) Baked beans.
- Cheer: Nuthatch on lilac. BlueTit feeding video cute.
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 0:4 (moving 10%, talking 10%, counting 0%) ❌, moving ➔ 80%/3-4 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "85%" ❌ and sleep 8h31 - deep only after a quick cold at 4:30, good for lower back unrest as well as overheating ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 8h31, all deep, but difficulties ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:20-8:53 x5’, 0 deep doze. Sum: h40+8h53-(10+5+25+18=)58’ = 9h33-58’ = 8h31.
Could have been in bed at 23:00, but it took till 23:15 till I actually did for something totally unimportant (phone deleting), then pee, then back exercises. 0:50 LBU, trying without QCS (but why?!) hang pill 10’ 2:15 overheated, even more reason for a QCS, instead of just taking off long sleeve. No birds. Split back exercises, 2nd pill. 3:45-4:10 still overheated with nausea, incl. thinner duvet and taking off long sleeve and longjohns. 6. Trying to stretch loins caused cramps in both legs upper and lower. first robin. 25’. 4:33-4:50 18’ QCS cos of LBU. Taped robin cos of a brilliant motif. Why do robins sing earlier in town: English search.
Robins? -8:55 4h of sleep, just cos of the QCS!
2) Watching TRIGGERS, esp. of exhaustibility. Apr 8th: What caused 4 seizures? Apr 2nd: Last 3 focal seizures were slight & during TT. Apr 2nd: Better sleep 2x, seems from earlier sun? Histamine foods: 30g goat cheese, 150g baked beans (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures Apr 8th (3-4) 2nd (1), Mar 28th (1), 20th (1) & 2nd (2), Feb 19th (1), 14th (1) & 3rd (1). Click for latest (Apr 8th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec) to 4-weekly (before May, July-Sept). Increases from stress, histamine, and less GABA. Apr 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), Mar 21st- LDN 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
Celandine - first blossom in unexpected place where there is only sun in the early morning,
both garlic mustards.
b) Birds:
*(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks - I think Great&BlueTits Jacks ) Latest / earliest robin song: …21:00 / 4:00… *
(Regular cheer, song/calls/seen: Chaffinch, but not much Chiffchaff Collared dove)
ba) Special Song/Calls: My Blackie sang only about once or twice in the evening, too much to do with the nest, but once not loudly, not long at around 9:00. Then “enemy from above” call.
bb) Specials seen in garden/balcony:
bba) Nuthatch on lilac for almost 10’.
bbb) BlueTit feeding video cute - 2 things given the baby bird dropped - feeding is not easy!
bc) Heard clearly above: Grey goose at around 9.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bank vole - I think
e) Human life: (Skip-Bo Wife )
f) Environment: (Outdoors .)
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
2024-04-14 Sunday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 15% (), energy profile “very slow”, TT 1:2 , jackknives , walking / cycling 10’ ().
- Creatine monohydrate Apr 9th- 2x5g (Mar 19th- 2g, 6th: 2g and 5g). Increasing slow energy.
- Working on when best to take the Quick Cold Shower at night… Didn’t help much before sleep.
- Carnitine good for lipids and stamina, tartrate better than base.
- Triggers: (Tooth treatment ) Kefir, and buttermilk with lemon and raspberry. Yesterday warm, but today too cold without longjohns. Flea-market pain of 4-5, looking down, trying to distract and sit at the side.
- Thinking about getting further official diagnoses etc.
- Cheer: lilly-of-the-valley, planting last year’s seeds, orange tip buttefly (Aurorafalter)
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 1:2 (moving 10%, talking 10%, counting 10%) ❌, moving ➔ 80%/3-5 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually ?"85%" ❌ and sleep ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): , all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:40-: x5’, 0 deep doze. Sum: h+h-(x5’=)’ = h-’ = h.
QCS at 11, but then after caring for guinea pig saw a special offer for quercetin in my mails which I wanted to combine with a special offer running out today. Hoping to sleep thru.
0:35 5’ awake again, sleeping deep, but QCS didn’t stop waking in the first part of the night, so praps a bit later?
3:05 tough gettin up means I dream of getting up a while, but don’t manage. 5’ Rain. No birds.
3:35 felt deep, but 4th time(?) awake, no LBU.
6:15 awake from GreatTit 5’
6:35 stomache ache / pressure, wind, heart thumping, just awake. Try to swith to earlier? But that only works if I can get the guinea pig to bed earlier. Now up. At night first part of the night every hour, took too much GABA too quick, instead of spread, so better do that in that case. QCS better at 1 or 2.
Robins?
2) Watching TRIGGERS, esp. of exhaustibility. Apr 14th Pain of 4-5 at the flea-market, looking down holding my wife hands firmly, trying to distract and later sit to the side whilst my wife talked with the kids selling stuff. Histamine foods Apr 14th: Kefir has histamine of 1, like yogurt, whilst lemon and raspberry has 2, so I should only use a bit of that in the kefir to fly under the radar. (✅). Apr 8th: What caused 4 seizures? Apr 2nd: Last 3 focal seizures were slight & during TT. Apr 2nd: Better sleep 2x, seems from earlier sun? Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures Apr 8th (3-4) 2nd (1), Mar 28th (1), 20th (1) & 2nd (2), Feb 19th (1), 14th (1) & 3rd (1). Click for latest (Apr 8th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec) to 4-weekly (before May, July-Sept). Increases from stress, histamine, and less GABA. Apr 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), Mar 21st- LDN 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
‘Research’ today
L-carnitine is good for lipids and stamina, tartrate (like before) is a better form than just “base”.
Quality of life: 90%
Lessons in self-care:
a) Thinking about something someone wrote on a bird forum but self-care recommends not answering emotional stuff and minding my own business.
b) Fed guinea pigs in evening cos 1 had lost weight again a bit, I actually had wanted not to today, esp. cos they had a lot of grass, what luxury. I do need to keep my efforts down if he keeps his weight up.
c) Wife explained to people how I am - and couldn’t help getting emotional, I didn’t watch cos I knew that’d be better for both of us. A doc there suggested pain meds (ha-ha), rehabilitation (ehm…), and getting a long covid diagnosis - that’s something I’d been planning to ask my 2nd GP about already, together with vaccine injury and higher disability.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
aa) First lilly-of-the-valley blossoms. Many 100s green, 5% white.
ab) Planting last year’s seeds stress and fun.
ac) Rhododendrons flowering a lot.
ad) Cherry growing green leaves setting off the white blossoms.
ae) Magnolia still blossoming a bit.
af) Chives blossoms coming up,
ag) and bellflower blossoms under double boxwood.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: …21:00 / 4:00… Robin nearby.
(Regular cheer, song/calls/seen: House sparrow. Greenfinch praps, at least a call similar? Chaffinch Chiffchaff not sure. Wren maybe, pair small and fleeting. Collared dove)
ba) Special Song/Calls:
baa) Blackbird often/long using “flight enemy” cheeps, hardly singing in the daytime, but surprisingly late, then a scolding finale as ever at 20:53.
bab) Heard 2 GreatTits, one singing fast, one slow, same motif, like a battle.
bac) Dunnock very near despite my dictation, then off quick. Heard too.
bad) BlueTit looked into a GreatTit nesting box… what does that infer?
bae) Robin short cheeps seem feeding noises.
baf) Raven calling?
bb) Specials seen in garden/balcony:
bc) Seen above: 3 grey geese Monday morning.
bd) Specials neighbourhood:
c) Animals: (guinea pig antics . Redbrown squirrel )
Big brown (serotine) bat in the evening. Bank vole . Several male orange tip (butterflies) (Aurorafalter) in my “beloved” barren land next to the flea market.
e) Human life: (Skip-Bo Wife ) Using panorama photos of the flowers - not nice yet, trying it out.
f) Environment: (Outdoors .)
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
2024-04-15 Monday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 15% (), energy profile “very slow”, TT 1:2 or 0:3 , jackknives , walking / cycling 15’ ().
- Creatine monohydrate Apr 9th- 2x5g (Mar 19th- 2g, 6th: 2g and 5g). Increasing slow energy.
- Triggers: (Tooth treatment )
- Cheer: Exciting to have gone overboard ordering 100 buckets to collect rain. Getting to know Blackbird life and sharing experiences and singing more. Cool sitting in veranda at the back. Decorating around house with garden and neighbourhood blossoms etc…
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 1:2 or 0:3, too rainy in the evening (strong wind, everything too much: moving 20%, talking 20%, counting 20%) ❌, moving ➔ 80%/3-5 (❌), jackknives ✅ (but not actually doing them, cos I'm a bit skimpy atm) SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "85%" ❌ and sleep 8h08, 4h straight after QCS ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 8h08. 4h straight after QCS, all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:25-8:08 35’, 0 deep doze. Sum: h35+8h08-(x5’=)35’ = 8h43-35’ =
(Teeth and back exercises, still not early enough.)
0:50 5’ 1:45 5’ 3:50 5’+QCS 20’ = 25’
Taping, pee, back to bed at -4:13. 8:35 painfully firm stools, but when did I get up?
Robins?
2) Watching TRIGGERS, esp. of exhaustibility. Apr 8th: What caused 4 seizures? Apr 2nd: Last 3 focal seizures were slight & during TT. Apr 2nd: Better sleep 2x, seems from earlier sun? Histamine foods: 30g goat cheese (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures Apr 8th (3-4) 2nd (1), Mar 28th (1), 20th (1) & 2nd (2), Feb 19th (1), 14th (1) & 3rd (1). Click for latest (Apr 8th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec) to 4-weekly (before May, July-Sept). Increases from stress, histamine, and less GABA. Apr 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), Mar 21st- LDN 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Lessons in self-care:
a) Helped defend Blackbirds against Magpie too close to the nest, nothing happened, but I’m not sure I should get involved, maybe just with presence without throwing chestnuts.
b) Too wet and windy to sit in the cellar entrance, so I moved to the veranda, good idea to not get wet and also avoid neighbours, hidden away.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Ordering 100 used (washed) white buckets for 100€ for rain water is exhilarating fun, with the challenge to get as much rain captured as I can, now I know how collecting it works best, sort of side hobby, easy one, the small pleasures, understanding how my world works. Also a challenge where to put the empty and then full buckets - lots of ideas.
b) Sitting in veranda is a totally different view on the garden, esp. the birds, cos on my mat on the floor of the veranda “doorway”, I’m in full view of and close to the bird house.
a) Plants: (Newest blossoms) Found moss, pretty chestnut blossoms and maple leaves and seeds in the neighbourhood to decorate, as well as the lilac blossoms and redflower currant.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: …21:00 / 4:00…
(Regular cheer, song/calls/seen: Greenfinch(?) Chaffinch Chiffchaff Wren(?) Collared dove)
ba) Special Song/Calls:
Good to have gotten confirmed by reading that earliest singing is only before breeding time, so only 1-2 months, February-March.
bb) Specials seen in garden/balcony:
bba) Blackbird singing quite a bit today, I think relieved after the issues with the Magpie. Even a bit in strong rain and of course esp. afterwards.
bbb) Blaxie “jumping” on Blackie seemed to mean: go take over the nest for a bit - was only a minute or 2 tho.
bbc) Learning to emulate Blackie’s high notes better.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bank vole
e) Human life: (Skip-Bo Wife )
f) Environment: (Outdoors .)
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
2024-04-16 Tuesday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 15% (), energy profile “very slow”, TT 1:1, later 2:0 against lesser players , jackknives , walking / cycling 10’ ().
- Creatine monohydrate Apr 9th- 2x5g (Mar 19th- 2g, 6th: 2g and 5g). Increasing slow energy.
- Triggers: (Tooth treatment ) Sinuses histaminey from the natural kefir with bits of vanilla and rasperry yogurt in
- Cheer: Closer to wildlife in the veranda!
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 1:1 this morning, then 5' with strangers and 1 game with mate late afternoon, knackered (moving 10%, talking 10%, counting 10%) ❌, moving ➔ 80%/3-5 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "85%" ❌ and sleep 8h05 ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 8h05, all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 22:55-7:37 10+22’+5’, 0 deep doze. Sum: 1h05+7h37-(37’=)’ = 8h42-37’ = 8h05.
22:55 bed, 0:50 10’ brushing teeth and back exercises, cos forgotten. Firm stools out with push and pull method. 2:35 10’ + QCS. 2 brown pills. Fall to side, but a few moments later can stand on one leg, worse again directly after the QCS, but stubborn as ever. Tired, druggy, slightly nauseous. 2:45 = QCS. 2:52. Slightly sick nauseous from stomach, so not 3rd GABA yet. Chapped area on right big toe is now healed. -2:57 back. No birds. = 22’ 6:15 5’ 3rd pill. I’d love to hear a full spring dawn chorus. -7:37 up.
Robins?
2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: Slight histaminey headache from adding a smack of raspberry, vanilla and/or lemon buttermilk to the kefir, 30g goat cheese (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4, why? - somehow overwhelmed). Click for latest (Apr 16th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Apr 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), Mar 21st- LDN 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
‘Research’ today
Someone asked about whether OsteoStrong is good. I found possibly, but on Wednesday: much too expensive.
Quality of life: 90%
Lessons in self-care:
a) Rain legs on keeping me warm despite the cold.
b) Wanted to go to bed earlier, but was distracted by a 3rd new old phone using data cos I hadn’t turned them off. Important enough for me.
c) My wife felt I seem a bit better at the moment, not sure, maybe slightly in a certain way.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
Closer to wildlife in the veranda!
a) Plants: (Newest blossoms)
b) Birds:
Found a nice article about my beloved blackbirds. They can eat from hand it seems, confirmed by this short. Surprising also to me is that it says that it’s young males that start singing first in February. And that their song in the mornings is shorter, more “spoken” than in the evening.
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: …21:00 / 4:00…
(Regular cheer, song/calls/seen: Chaffinch Collared dove)
ba) Special Song/Calls:
baa) Veranda: Blackbird close, heard him sing a motif I’d sang to him, maybe he’s listening, why not…
bab) Collared dove with a broken voice very characteristic.
bb) Specials seen in garden/balcony:
bba) Blackbird often close. On sculpture, then to nest. Under yew. Looks out under rhododendrons.
bbb) alarm near magpie nest, after it was more subdued 10 jacks flew around the tree, the young one remained there, adults seemed to want to coax away.
bbc) Nuthatch sat on cherry and on the wall, and there in the ivy.
bbd) 2 brown ones flew quickly by, think robins, cos they were around later, but never sure, they’re so fast.
bbe) GreatTit close in rose, elderberry and deadwood.
bc) Seen above: Duck I think.
c) Animals: (guinea pig antics . Redbrown squirrel close to veranda in bird house then cherry trunk, didn’t mind me typing. )
Bats Bank vole close, running around cherry. Insects: Bee on rhododendron. , 2-3 bugs I don’t know .
e) Human life: (Skip-Bo Wife ) Glass fibre person at the door was misunderstood and sent away by older neighbour. Maybe he understood “glass of water” (like I did, listening from further away).
f) Environment: (Outdoors .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain ().)
Simplified: Dictating these notes is easy, writing them down does take a while tho…
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
2024-04-17 Wednesday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 17% (), energy profile “very slow”, TT 0:3 , jackknives , walking / cycling 10’ ().
- Creatine monohydrate Apr 9th- 2x5g (Mar 19th- 2g, 6th: 2g and 5g). Increasing slow energy. Forgot creatine 1st meal, but seemed slightly more instead of less energy?!
- Triggers: (Tooth treatment ) Vanilla. Playground.
- Cheer: Many close encounters of the bird kind. Veranda helps. Grandkid.
- Simplified: Not needing laptop memos anymore, mainly various phone alarms, sometimes timer now.
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 0:3, pain at start of 3rd game (moving 10%, talking 10%, counting 10%) ❌, moving ➔ 80%/3-5 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "83%" ❌ and sleep 7h23 ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 7h23, all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:20-7:08 25’, 0 deep doze. Sum: h40+7h08-(25’=)’ = 7h48-25’ = 7h23.
Robins?
Kate Bush Aerial & Live, bed at 23:20.
0:52 5’ very deep, bladder very full, 5’, 1st GABA + apigenin.
1:55 10’ 2nd break 2 brown pills no QCS, half back exercises
3:10 5’ 3rd break, brushing teeth, seems too cold for QCS.
5:15 5’ still try without QCS, slightly histaminey sinuses. Robins, black far away dreaming a lot about India people hidden in the bottom of houses, behind walls, dangerous, threatened, by weather and more.
-7:08 didn’t feel sensible to carry on
2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: kefir, adding a smack of raspberry, vanilla and/or lemon buttermilk, 30g goat cheese (✅): left tongue hurting quite a bit for half the day, I think from vanilla. Planning on meeting kid/grandkid, see how far I get with that, sposed to be raining and it's better for me outdoors - Managed quite well to play with grandkid, but suddenly after 1h I started hurting and getting nauseous, inside toilet and sitting a bit showed no improvement, felt really sick a bit, I think cos I'd taken half a bite of a cake and of a scone or something of my grandkid's. So we decided I need to go. Felt sick quite a time. Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): 17th: Forgot creatine 1st meal, seemed slightly more instead of less energy. Taking EGCg and carnitine regularly now, had sometimes forgotten magnolia bark, so installed a new paper reminder. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4, why? - somehow overwhelmed). Click for latest (Apr 16th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Apr 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), Mar 21st- LDN 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
‘Research’ today
Someone my wife told about my conditions gave her a really good German cook book, by modern doctors: 20% I already do, 80% of suggestions I don’t tolerate, 100% of recipes I don’t, 100% of information I already know…
Quality of life: 90%
Reasons to be cheerful:
Why 100 10L buckets? I’d been looking for further rain barrels anyway, and a neighbour had dug out his garden for a 1500L cistern. The buckets I can fill / carry and empty / stack as I choose. Plastic yes, but PP, the best kind, and used, not new, so environmentally better. And easy to get transported to me.
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
Annual honesty: purple blossoms.
I keep seeing a characteristic leaf in garden and neighbourhood, seems to be moschatel (Moschuskraut), but not sure.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: …21:00 / 4:00…
(Regular cheer, song/calls/seen: Chaffinch Collared dove)
ba) Special Song/Calls:
bb) Specials seen in garden/balcony:
Close encounters of the bird kind (often 2m):
bba) Woodpigeon, bbb) GreatTit & bbc) - on my bike - BlueTit.
bbd) Nuthatch at cup with fat & grains, bbe) bank vole under ivy, bbf) filmed blackbird close behind me upside down thru my legs, bbg) dunnock in insect palace, bbh) GreatTit at birdhouse, bbi) later 2-3m near me started singing on branch, bbj) BlueTit chirping. bbk) Coming out of cellar door I disturbed 2 BlueTits close to the door, but bbl) a GreatTit 4m away had been bathing and was shaking itself without feeling disturbed.
bbm) A warning by Blackbird also shows me a nuthatch in the vine, but Magpie was meant.
bbn) Whilst I’m reading the rattlingcrow blog about blackbird alarms my pair are using several alarms, which is funny.
bbo) Blackcap several times.
bbp) Magpie flew away when I came out of the cellar entrance, bbq) woodpigeon stayed. bbr) Magpie in garden didn’t make blackbirds complain, it depends what they are doing.
bbs) Robin bathing close when I came out, but shyer with filming. bbt) Bathing again, another hopped from one bike saddle to another to another near me, for a minute I thought praps a wren too.
bbu) Ate 3rd meal in garden, great for the evensong and robins.
bbv) Late in veranda, robin singing above me till 21:10.
bc) Seen above: 1 + 3 Ducks, probably Mallards.
bd) Specials neighbourhood: Mallard Duck walking around on playground in town.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bank vole Insects: bees, bugs
ca) Night creature noises around me, praps hedgehog, and something more in the distance.
cb) Took out guinea pig earlier and left him alone, just kept looking what else he wants to eat.
cc) He’s now re-gained 250 of 400g he’d lost!
e) Human life: (Skip-Bo Wife )
f) Environment: (Outdoors .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain ().)
Simplified: I’ve put all my laptop memos on “ignore”, cos I haven’t used them for 40-50 days.
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
2024-04-18 Thursday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 17% (), energy profile “very slow”, TT 1:2 , jackknives , walking / cycling 10’ ().
- Creatine monohydrate Apr 9th- 2x5g (Mar 19th- 2g, 6th: 2g and 5g). Increasing slow energy.
- Triggers: (Tooth treatment ) 10g vanilla in yogurt, specks of marmite regularly. Video meeting for work 20’: Cortisol energy, pain only of 4, but sick & strained, careful not to overuse energy. Still better outdoors, indoors I hurt more.
- Watch: Firm stools. Woolen socks still itch. 2 moths in capsule package.
- Cheer: New blossoms on blueberries, lunaria, strawberries, full bloom on lilac and rhododendron. Blackbird chicks chirping! Redstart? Many close encounters of the bird kind again, ducks overhead. Recovering Guinea pig record breaking weight.
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 1:2 (2nd game easy, 3rd game close) (moving 10%, talking 10%, counting 20%) ❌, moving ➔ 80%/3-5 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "83%" ❌ and sleep ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 8h35, all deep ✅, felt too histaminey and sleepy to need QCS, sinusey, sick, throat dry, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 22:55-7:50 4x5’, deep doze a bit. Sum: 1h05+7h50-(4x5’=)20’ = 8h55-20’ = .
Robins? Question still being if it’s the same one that sings late and early, or if it’s one that goes late and another that starts early. Mine prefers neither, I think.
Back exercises in bed 22:55,
0:15 5’ no robin.
1:15 5’
3:00 5’ taxi noisy, felt too histaminey and sleepy to need QCS.
5:50 5’ dawn chorus: My Blackbird is singing the same motifs in the same way as in the daytime, as opposed to what this article said. Sinusey, sick, throat dry.
-7:50 I was going to say deep doze, but if it was 2h that seemed much less, then i was definitely sleeping.
2) Watching TRIGGERS, esp. of exhaustibility. I think it's the vanilla causing the most histaminey problems (night). But Marmite regularly a speck might be part of the problem too, keep forgetting that. Video meeting for work 20' (2 new people and people continually came on) made me extremely knackered sweating, histaminey, broken, cos talking most of the time ➔ cortisol high improving energy, pain only of 4, but sick & strained, gotta take care. Histamine foods: kefir, adding a smack of raspberry, vanilla and/or lemon buttermilk, 30g goat cheese (✅. Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): Firm stools again, heck of a strain, almost like passing out - sick, exhausted, shaky. Taking socks off skin hurting cos woolen socks had gone above the cotton ones under them. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4, why? - somehow overwhelmed). Click for latest (Apr 16th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Apr 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), Mar 21st- LDN 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Lessons in self-care:
The 10% more capsules cos they hadn’t seem my payment had 2 small moths in them, I spose I should get back to them on that. Still gonna use them, don’t see a problem with that.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
- Blueberry blossoms are white.
- Purple blossoms on lunaria annua, like in neighbourhood.
- Lilac in full purple bloom, so I’m regularly taking off blossoms before they wilt and esp. before they turn to seeds, bad for native plants.
- Rhododendron maximum full white on the left, pink buds with white blooms on the middle right, what’s left is middle left and on the right ponticum.
- Strawberries blossoming crimson-pink in a balcony pot.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: …21:00 / 4:00…
(Regular cheer, song/calls/seen: Chaffinch Chiffchaff Bullfinch Collared dove)
- Blackbird chicks chirping!
- Red medium-sized bird flew towards my window, might’ve been a redstart.
- Blackbird close, duet, dunnock at birdhouse, 2 squirrels in cherry eating, not playing, red-brown and brown-grey-black.
- Raven flew over, different call than crows.
- Robin singing and GreatTit calling on balcony.
- GreatTit flew in nesting box and stayed in.
- piew piew piew - bullfinch?
- Robins more nervous at the moment, altho still fairly near, maybe cos of the new female partner not knowing me or cos of breeding.
- New call, high like a Tit, but doubt that, praps again redstart?
- New call at table tennis and collecting grass, too.
- Blackbirds making me aware of Magpies in the cherry, but they’re not alarmed, maybe cos the Magpies seem to be out for practicing flying.
- Chiffchaff at table tennis.
- Pretty close: robin, GreatTit, dunnock, woodpigeon.
- Flying bird with long neck, duck-sized, will have been a mallard duck. Another flying over our house, making a duck-ish sound, gotta check duck flight calls.
- Taped blackbird 2x evensong 20:50 despite washed, turbaned hair.
- Robin in park singing till at least 23:00 (rain).
- 5:50 5’ dawn chorus: My Blackbird is singing the same motifs in the same way as in the daytime, as opposed to what this article said.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bank vole Insects: bees, bugs .
Bank vole near cellar entrance and under cover of sandarium.
Guinea pig record breaking weight yesterday evening, now re-gained 250 of the 400g (30%) he’d lost in half a year.
e) Human life: (Skip-Bo Wife )
Looking forward to re-ordered pills & capsules coming and buckets too (but forgot LDN and buckets didn’t arrive).
f) Environment: (Outdoors .)
Outdoors: I feel fine, sitting and typing, as soon as I come in I start hurting, muscles aching.
g) Body: (“Theoretical” energy 30% ().)
Energy up from video meeting stress, so playing TT and getting grass was OK, feeling fairly normal - just need to be careful not to overuse it.
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
2024-04-19 Friday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 16% (), energy profile “very slow”, TT 0:3 (but effortlessly), jackknives , walking / cycling 10’ ().
(Difficult start. Don’t think cos I forgot to get the next LDN batch from the pharmacy, so had to do it early. Also forgot morning meds till before 2nd meal…) - Creatine monohydrate Apr 9th- 2x5g (Mar 19th- 2g, 6th: 2g and 5g). Increasing slow energy.
- Triggers: (Tooth treatment ) Food: vanilla & raspberry caused histaminey sinuses.
- Cheer: 4 bank voles!
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 0:3, but effortlessly, one game was close, and I could have played a 4th (moving 10%, talking 10%, counting 10%) ❌, moving ➔ 80%/3-5 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "84%" ❌ and sleep 9h05, but felt like, 2h? deep doze at the end (✅) ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 9h05, but felt like, 2h? deep doze at the end (✅), everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:05-8:35 x5’. Sum: h55+8h35-(10+3x5’=)25’ = 9h30-25’ =
acidic nitricum 1x3 gl.
0:55 10’ after 2h
1:50 5’
3:15 5’
6:20 5’ felt dozing after, histaminey headache, so try DAO.
2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: kefir, adding a smack of raspberry, vanilla and/or lemon buttermilk, 30g goat cheese (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): Difficult start. Sore bum muscles a few days, dunno why. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4, why? - somehow overwhelmed). Click for latest (Apr 16th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Apr 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), Mar 21st- LDN 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Lessons in self-care:
- Indoors from 18:30 till bedtime, but at least I did my back exercises whilst airing bedroom for the night, gotta do that more.
- Supps - after having decreased 7-8, it’s confusing to remember which ones, also a challenge to distinguish results. Nicotinic acid won’t make much difference, but how high are my lipids?
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
Nice garden pics in the sun and at night. Feels like my private wood: rhododendron maximum bright white, tulips, wood corner.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: …21:00 / 4:00…
(Regular cheer, song/calls/seen: Chaffinch Chiffchaff Bullfinch Collared dove)
- GreatTit really loud, 4m away.
- Redstart?: Seemingly reddish bird with longer tail, but my eyes were blurred first and I needed to stretch my neck around. Can’t exclude a chaffinch for sure.
- Blue&GreatTits searching the boxwood for the eggs & caterpillars of the box tree moth, that’s a nice help for me and the boxwood, & bathing near me.
- Nuthatch in cellar entrance with full beak, more likely nesting material than food.
- Robin near me on sculpture, GreatTit on the balcony, 2Blue&GreatTit there all in a row on the railings.
- Thought I heard my blackbird singing in our street, that’d be unusual, but possible.
- Identified the pair of brown birds often speeding past me: the robins. The female has white wing rims.
- My singing with the birds is more call & response than duet, it continues to seem as if they answer me and start singing if I animate them.
- When blackbird sounds alarm, I always go and have a look what’s up, at a distance, often my presence calms them. It’s never a cat, the owners here aren’t letting them out. Either magpie or false alarm.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bank vole Insects: bees, bugs
- 4 big bank voles (at least)! One under veranda, one under deadwood, one carrying a chestnut directly in front of me and one to the right of the deadwood pile. Quite busy!
- Redbrown squirrel near Blackbird’s nest, but no trouble, then jumping around in the garden.
- Guinea pigs dining Italian (noodles) when they get fresh grass.
e) Human life: (Skip-Bo Wife )
f) Environment: (Outdoors .)
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
2024-04-20 Saturday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 15% (), energy profile “very slow”, TT 2:1! (), jackknives , walking / cycling bit better, 20’ ().
- Creatine monohydrate Apr 9th- 2x5g (Mar 19th- 2g, 6th: 2g and 5g). Increasing slow energy.
- Triggers: (Tooth treatment ) Slight sinusey headache despite DAO, but much less than expected with a good part of 250g raspberry buttermilk, 150g vanilla yogurt and 125g mango vanilla yogurt. 2.5h deep dozing of 8h sleep - needed a quick cold shower and NSDR: Wondering if it’s the histamine that the DAO doesn’t let sinuses come up, but can’t prevent the insomnia? Acidum nitricum doesn’t seem to be working.
- Cheer: Raptor, I think a red kite, above! And a grey heron low. 100 buckets arrived! Robin pair so cute. Again so many close encounters of the bird kind. Found glove (like a few days ago) before I realized I’d lost it.
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: Shattered from talking with a couple for 5-6 minutes, then double from filming the red kite(?), then table tennis, but surprisingly 0:1, 2:1 - pushed thru, felt sick, but able to walk, not like after filming, where I was stumbling all over the place. So talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 0:1 ➔ 2:1!! (moving 10%, talking 10%, counting 10%) ❌, moving ➔ 80%/3-5 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually ?"85%" ❌ and sleep ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 8h03, of that 2.5h dozing/NSDR ❌, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 23:15-8:15, 0 deep doze. Sum: h45+8h15-(10+30+15+8’=)63’ = 9h-63’ =
0:55 10’ Creaming hands, not too histaminey.
2:35-3:05 30’ (QCS). sinuses & tongue still good, praps QCS next or test if the acidum nitricum helps. 2:48 Things I wanna keep writing keep keeping me awake, first time at bed time, in the breaks. 2 brown pills. Thoughts of things I could write on the bird forum (blue tits feeding each other, GreatTits in nesting box, nuthatch close, veranda, Tits vs. box wood moth, even outside) so now quick cold shower QCS.
2:59 wasn’t able to stand on one leg well, but didn’t try too much, also to save time (important at night!) I put on deodorant whilst peeing, felt something wrong between toes on my right foot, calendula essence.
3:02 made sure to keep my woolen cotton socks higher than my woolen socks, thoughts: What’ll I talk with my GP. 5’
3:28 → NSDR Thoughts keeping me awake, like about work, so taking my phone for yoga nidra and taking 3rd GABA
3:33 First one then the other almond milk tetrapak fell off the table, cos a see-through pill box was in the way I couldn’t see in the dark, had to clean up, tetrapak open and leaking, so had to turn it upside down, then back to NSDR.
5:06 15’ robin in front of window - took ages- NSDR for 20’ before I fell asleep, dropped off in between a little, see if I have to do it again.
5:11 not many birds yet, robin pretty much solo, short quiet bursts.
5:21 wondering if it’s the histamine that the DAO doesn’t let sinuses come up, but can’t prevent the insomnia? Acidum nitricum doesn’t seem to be working.
7:02 8’ break. Dreaming about recommending my wife’s mechanic.
7:07 Stomach ache of 1, pressure, back to bed.
7:09 Or is that all initial worsening, or aren’t I taking them enough?
8:15 Dozed around, now getting up.
8:23 Bit unfair that I’m keeping screen curfew, early sun, but still not sleeping well.
Robins?
2) Watching TRIGGERS, esp. of exhaustibility. Histamine foods: Slight sinusey headache despite DAO. A great part of: 250g raspberry buttermilk, 150g vanilla yogurt and 125g mango vanilla yogurt. 30g goat cheese (✅). Wondering if DAO can only reduce the sinuses hurting, but not prevent insomnia? Acidum nitricum doesn't seem to be working, or I need to adjust dose/time. Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
4) UNDER CONTROL ✅ (attention necessary (✅)): Felt something wrong between toes on my right foot at night, so calendula essence regularly. Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4, why? - somehow overwhelmed). Click for latest (Apr 16th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Apr 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), Mar 21st- LDN 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Lessons in self-care:
Bed late again, and not enough fresh air in the evening, grrrr.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
Rose bud coming up.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: …21:00 / 4:00…
(Regular cheer, song/calls/seen: Chaffinch Chiffchaff Collared dove)
- Robin pair frequently on balcony. Improving the feeding place helps.
- Female robin close, blackbird singing softly with me.
- After disturbing blackbird, he just flew away a bit and started answering my singing, then flew up to another.
- GreatTit & Robin in boxwood after bathing.
- Raptor, praps red kite annoyed a bit by 2 jacks and a crow or raven.
- Grey heron low in neighbourhood in the evening.
- After 6 is a good time for moving, cos birds are resting more.
- Dunnock singing a lot today.
- Magpie baby in neighbourhood alone and still calling and hopping around on a roof, seems a bit helpless. Later back home.
- Blackbirds getting fed even after 8, noisier.
c) Animals: (guinea pig antics . Redbrown squirrel )
Bank vole Insects: bees, bugs
Small greyer mouse in the feeding box again at night (like a week ago a pair) would mean they’re different from the 4 bank voles, maybe house or field mice or just bank vole babies (greyer, smaller), so 6 mice altogether… When the cats are let loose again after breeding season they’ll have a feast, well unfortunately and naughtily they don’t eat up. Wondering if they really are bank voles, cos ears seem too big and nose too pointed.
e) Human life: (Skip-Bo Wife )
- Yippee, the 100 buckets for rain water arrived, don’t take up much room, like I first expected, handles aren’t thick/strong, but more handy, let’s see if they are strong enough. Rain barrel was full, so took out at night, dropped an empty bucket, didn’t get too much stick.
- Found glove before I realised I lost it 2 days ago, same now.
f) Environment: (Outdoors .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain ().)
- Wasn’t able to stand on one leg well at 3, but didn’t try too much.
- 3:33 First one then the other almond milk tetrapak fell off the table, cos a see-through pill box was in the way I couldn’t see in the dark, had to clean up, tetrapak open and leaking, so had to turn it upside down, then back to NSDR.
- Dropping empty buckets outside late at night and early in the morning, luckily didn’t annoy too many people with that.
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
2024-04-21 Sunday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 18% (), energy profile “very slow”, TT 2:2 effortless (), jackknives , walking / cycling 10’ (). Energy after not too good night might: just cortisol, or reason for hope?
- Creatine monohydrate Apr 9th- 2x5g (Mar 19th- 2g, 6th: 2g and 5g). Increasing slow energy.
- Triggers: (Tooth treatment ) Slight headache (top front) 5-8, but migh’ve been thirst.
- Many dryness issues.
- Cheer: Close Encounters. Blackcap bathed in water bowl.
Grey Goose. Yellow mallard duck chick.
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 2:2, the 2 I lost were close, effortless, but may have been cortisol energy from short night (moving 10%, talking 10%, counting 20%) ❌, moving, e.g. fairly long cycle-walk after lunch ➔ 80%/3-5 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "82%" (❌) and sleep 8h - so after going to bed earlier I didn't need QCS, no heart thumping, distracting possible before it happened. 2 brown pills at 3:30. ✅ ("PPA": 2-3 (✅)). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): , all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 22:45-: 43+3x5’, 0 deep doze. Sum: 1h15+7h43-(58’=)58’ = 8h58-58’ = 8h.
22:45 bed,
23:45- 43’ 6 0:28 A3, apigenin, no GABA yet.
2:05 5’ GABA #1
3:35 5’ GABA #2 2 brown. Left eyebrow hurting - pressure or stress? But then better again. And under my lower lip hurting too.
5:40 5’ Slightly histaminey headache, or thirst? Why do I feel I’m getting thirstier and drier? Is that carnitine and/or EGCg? GABA #3. Blackbirds, GreatTits, still can’t here robin. But possibly at 3:30??
-7:43 Still slight headache front of top of head, slightly firm stools.
GABA #4. So after going to bed earlier I didn’t need QCS, no heart thumping, distracting possible before it happened.
8:07 Tea tree oil on chapped skin on toe,
forgot the word for toe
headache still there
75kg net
sore behind right ear - calendula essene
re-order akilwinter cos tube disappeared
When time to tell colleagues I won’t be back? singly and all?
2) Watching TRIGGERS, esp. of exhaustibility. Still no histamine reactions all Sunday morning, so the DAO works for that and I'm continuing it, but still need to curb vanilla, raspberry. 5:40 Slightly histaminey headache, or thirst? Still front of top of head at 8 Monday morning. Histamine foods: kefir, adding a smack of raspberry, vanilla and/or lemon buttermilk, 30g goat cheese (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
Watching lots of small irritations, a lot from increasing dryness:
- like I guessed I do have some problem between 3rd and 4th right toe, so more calendula essence .Then tea tree oil.
- Why am I getting thirstier and drier? Is that carnitine and/or EGCg?
- Beau lines - trying to cream hands and
- re-order akilwinter for dry hands cos tube’s disappeared, not even under bed, and the others aren’t working.
- sore behind right ear - calendula essence.
- Left eyebrow hurting - pressure or stress? But then better again. And under my lower lip hurting too.
- 75kg net is OK.
- bit too firm stools again
- Back exercises in bedroom whilst it’s being aired ,
- stretching loins when sitting on veranda floor, improving, but very painful getting up.
4) UNDER CONTROL ✅ (attention necessary (✅)): Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4, why? - somehow overwhelmed). Click for latest (Apr 16th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Apr 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), Mar 21st- LDN 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Lessons in self-care:
- Decided to write to penpals in the mornings, but should do this blog first, otherwise I don’t get that done and fall back.
- When time to tell colleagues I won’t be back? singly and all?
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
- collected and placed lots of moss for paving stones, so earth not so naked,
- collected maple seeds for additional decoration,
- cut off some redflowering currant twigs for the front of the house as well, “cos it’s Sunday”.
- lime tree in front of my window nice light green,
- my wife and I remind each other of colours we forget.
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: …21:00 / 4:00…
(Regular cheer, song/calls/seen: Chaffinch Chiffchaff Bullfinch(?) Collared dove)
- 2 GreatTits bathing at the same time, woodpigeons & robins close.
- Robin girl sunbathing on the balcony railings until Splitty magpie came & saw me, 5:40 Blackbirds & GreatTits, but no robin.
- of 2 GreatTits 1 shaking feathers, so possibly young’un,
- Blackcap bathed in a water bowl.
- Grey Goose and a yellow mallard duck chick, one of 8.
- woodpigeons not in there any more, nor in cherry that much,
- no robin audible since 21:00.
c) Animals: (guinea pig antics . Redbrown with greybrown squirrel )
Bank vole Insects: bees, bugs
e) Human life: (Skip-Bo Wife )
f) Environment: (Outdoors .)
g) Body: (“Theoretical” energy 30% ().)
Foggies: (Body (). Brain ().) forgot the word for toe, finding words is cumbersome, movements difficult, things falling.
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
2024-04-22 Monday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 15% (), energy profile “very slow”, TT 0:4 , jackknives , walking / cycling 10’ (), “21:30” shattered.
- Creatine monohydrate Apr 9th- 2x5g (Mar 19th- 2g, 6th: 2g and 5g). Increasing slow energy.
- Triggers: (Tooth treatment ) The food histamine I’m beginning to believe is causing the high pee frequency, and some pain and urgency, maybe also the 2 focal seizures via less serotonin.
- Sleep: Good after QCS, acidum nitricum and nux vomica at & trying to reduce blue light while dictating. But as often after long sleep (>9h) less cortisol, bad day.
- Cheer: Just the many regulars.
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, TT 0:4, pain from 2nd on and confused head, but pushed thru, that may have caused the seizure after, didn't get worse, fine motor skills the main/only problem. (moving 10%, talking 10%, counting 20%) ❌, moving ➔ 80%/3-5 - 21:30 tired, kaputt, movements hard, shuffling, letting myself fall, limbs hurt (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "83%" ❌ and sleep 9h22 + 20' doze (best after QCS {and acidum nitricum and nux vomica} at 4:30) - need to watch and reduce blue light while dictating on phone at night. ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 9h22, + 20' doze ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 22:00-8:20 3x5’+43’, of that 20’ deep doze. Sum: 2h+8h20-(x5’=)58’ = 10h20-58’ =
22:00- bed
23:00 5’ A3, pee pain 1, Need to watch and reduce blue light while dictating on phone at night.
1:23 5’
3:00 5’ deep sleep, 2 brown pills
3:55 43’ (20’ doze) noisy people woke me up, no robin, so always 21:30 and 4:00 or later now. Acidum nitricum and nux vomica, altho stomach ache would have needed almond milk with GABA#4
4:23 rummaging to find dry mouth gel cos coughing, more a problem than the stomach, pee again, strong urge upon getting up, got new tube of dry mouth gel, so too awake, so now QCS.
4:34 end of QCS, white light, dress + bed in 4’. = -4:38, stll no robin song. Irritating that health office is further away now, but a few months to go.
-8:20 dozing a bit before, but finally managed to get up.
8:38 bit too firm stools, pain & strain: what to do? slight sore throat maybe from QCS.
2) Watching TRIGGERS, esp. of exhaustibility. Pee, sleep & seizure problems cos histamine up, thus serotonin down? Histamine foods: kefir, adding a smack of raspberry, vanilla and/or lemon buttermilk, 30g goat cheese (✅). Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
Irritations continued:
- epileptic/aura/dizzy feeling whilst listening
- seizure cycling home from TT around 17:45, again 18:40 after I read something about stem cell therapy.
- peeing every 15-20’ all afternoon, slight pee pain at 23:00, urge at 4:20: GABA?
- Stomach ache maybe from egg yolk, maybe it was off, altho it tasted and smelt fine.
- dry mouth gel for dry mouth/coughing
- bit too firm stools, pain & strain: what to do?
- slight sore throat after sleep, maybe from QCS.
4) UNDER CONTROL ✅ (attention necessary (✅)): Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4, why? - somehow overwhelmed), Apr 22nd (2) see above. Click for latest (Apr 16th) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 22nd (2) 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Apr 22nd (2: after TT), 8th (4: errands, eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), Mar 21st- LDN 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Lessons in self-care:
Irritating that health office for deciding is 25’ cycling away now, but a few months to go till they decide that I can no longer work at all.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) Plants: (Newest blossoms)
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: …21:00 / 5:00… (No robin song at 4:38 or before)
(Regular cheer, song/calls/seen: Chaffinch Collared dove)
bd) Specials neighbourhood: unfamiliar very loud and expressive bird call on way home, taped a little.
c) Animals: (guinea pig antics . Redbrown squirrel )
2 of the 4+ bank voles in stone area . Insects: bees, bugs
e) Human life: (Skip-Bo Wife )
f) Environment: (Outdoors .)
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
2024-04-23 Tuesday
Summary:
- LDN Mar 21st- 3mg, 10th- 2.75mg : Energy 30% , partly usable = 16% (), energy profile “very slow”, TT 1:1 (brain fog rather than energy), jackknives , walking / cycling 10’ ().
- Creatine monohydrate Apr 9th- 2x5g (Mar 19th- 2g, 6th: 2g and 5g). Increasing slow energy.
- Triggers: (Tooth treatment ) So this is my working hypothesis for this current flare of many additional issues, dryness irritations and more severe: Mast cells overreacting causing the dryness due to the histamine foods, so DAO can only curb a small part of symptoms. Possible tho that seizures now is “normal”, 2 weeks since the last ones.
- Cheer:
QCS. Curbed TT cos of brain fog/seizure-prevention. Reduced histamine.
(V)LDN: Mar 21st- 3mg, 10th- 2.75mg, 9th 3mg, 8th ?2mg, 6th-7th 2.625mg, Feb 8th-Mar 5th 2.25mg better than 3mg. ✅ (Slowly up from Oct 1st ~0.07mg. Click for effects/dosage...)
Walnuts, all apple sorts, larger portions of baked beans, I think that’s all LDN.
Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and reliably improved mainly energy (from 10%), heaviness, walking (from 5’), fine motor skills, stiffness (from 70% down to 10%), recovery time, Ache, pains, sleep , possibly from Dec on drinking only 2L/d which is helping sleep, and possibly reducing histamine and/or tannin from walnuts , but not my paleness (yellow/white face, black eye rims and white lips) or listening ability/sense . Last side effect was wobbliness, listening problems and Ache on day (1 and) 2 of 2mg (Dec 12th), before that “hangover” on Oct 20th .) .)
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5, Dec 11th 1x2, Dec 27th 1x2.25mg, Jan 10th 1x2.5mg, 16th 1x3mg. Feb 5th 1x1.5mg, Feb 8th 1.5+0.75=2.25mg. Mar 6th-7th 2.625mg, Mar 8th 2mg I think (2.75mg intended), Mar 9th 3mg, Mar 10th 2.75mg, Mar 21st- 3mg.
Additives: white capsules with TiO2 (HPMC with SiO2).
1) MAIN ISSUES: talking 5-10' ➔ 80%/4-5 ❌, music 10' ➔ 80%/3-4 (no nausea, strain less) (❌), white lips 70-100% ❌, #1 TT 1:1 felt OK, but kept it down to prevent seizures associated with pushing thru brain fog. Cycling OK (moving 10%, talking 10%, counting 20%) ❌, moving ➔ 80%/3-5 (❌), jackknives ✅, SO post exertional malaise (❌), "post postural ache", "PPA" (✅), stiffness (✅), exhaustibility theoretically "70%" ✅ / actually "84%" ❌ and sleep 8h08, To reduce the phone's blue light while dictating I just need to hold it askew. QCS at 5, then 3rd duvet 1h after helped, head pretty 0, sore throat 0. So HWB for outdoors too. ✅ ("PPA": 2 ✅). Energy profile: very slow, with "5h rest", 5h very slow, 6h slow, 0h medium, 0h quick. Click for past months...
EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but only if no triggers. Up before from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #2 Triggers.
SLEEP (click for details): 8h08, QCS at 5, all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...
Sleep 1:15-7:50 x5’, 0 deep doze. Sum: 1h15+7h50-(7+5+5+35+5=)57’ = 9h05-57’ = 8h08, QCS at 5.
22:45-
0:20 7’ cos I had to make some half-GABA-pills and take #1.
1:30 5’ GABA#2
3:15 5’ GABA#3 + 1 brown
4:40 35’ to reduce the phone’s blue light while dictating I just need to hold it askew. Strong urge. Dry/Thirst headache 3.
4:45 QCS? No robins or any other bird. GABA#4 brown#2. 4:56 QCS start.
5:00 robins & blackbirds 1h before sunrise, not loud, same motifs as in the daytime, not like churchtimes said “speaking” more…
toe and ear burning: still believe dryness, or circulation (blue hands at least once). -5:15
6:43 5’ cold, so 3rd duvet
-7:50 up, 3rd duvet good idea, head pretty 0, sore throat 0.
9:00 pee again, almost loss, HWB for outdoors, whole GABA for B0, so 1g more today, changed toothbrush cos of praps mould.
2) Watching TRIGGERS, esp. of exhaustibility. Kept histamine foods down again to 30g goat cheese (leaving the lemon buttermilk, rest is finished), seems better, but still pretty frequent, often strong urge, with occasional loss, dry/thirst headache, but this time better by the morning (✅). My working hypothesis: Mast cells overreacting causing the dryness due to the histamine foods, so DAO can only curb a small part of symptoms. Possible tho that seizures now was "normal", cos 2 weeks since the last ones. So increasing +1g GABA today. Reduced histamine foods, just some cheese, not the lemon buttermilk, so maybe symptoms will improve. Peeing a bit better, but still frequent off and on, needed to stop TT cos of pee urge altho I'd been shortly before, bit better in evening, but 9:00 pee again, almost loss. Changed toothbrush cos of praps mould. Strain: dentist#1 on Feb 15th, 20th and 29th (✅)-❌, next #3 for 3 tiny fillings once I'm recovered from those, definitely without anaesthetic. Click for list Nov 7th 2022 to Feb 20th...."
(Nov) 7th 2022 caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
2023:
(Jan) TCM recommendations for a few weeks took my appetite.
(Feb) ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(Mar) inkling of Covid, negative, but cough, appetite, night sweats…
(Apr) cancer checking ending with weird onco,
(May) 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
(June) 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(July) 19th-24th: 3 garden bird deaths
(Aug) July 31st-7th uro exam and methylene blue trial. 9th… severe vertigo, check in clinic no result, so trying blood meds again. Hindsight: Painful uro exam on 7th, stiff neck from bird deaths, twist-stretching too much.
(Résumé) These triggers are “monthly” and kept bringing energy down from 20% to 10%.
(Sept) Histamine/MCAS symptoms (headaches 0%, tongue burning 10-20%, down. Further painful bladder exam injured (‘screaming’ 3d) & scarred me, caused UTI (2x3d). CoV-type infection (12th 10 days) (hantavirus??), work stress, abdomen pains, 24th-: listening to music painful, guinea pig, wife, CVD meds bad.
(Oct) (V)LDN helping a “lot”, Complex filling OK, CVD meds bad, BP low and slow OK.
(Nov) Atorvastatin difficult.
(Dec) Guinea pigs, atorvastatin, boss, often post postural Ache, DAO: baked beans tough, better with less sauce and more DAO, but walnuts OK without now. 28th: car trip to kids and and only 2x20’ bad for several days. NYE stress.
2024:
(Jan): (1st) DAO: 0x: 100g baked beans with reduced tomato sauce for 2nd meal caused tongue to burn a bit for half an hour, 3x: 150g for 3rd meal caused no burnt tongue or histamine reaction at all, despite the addition : Makes a difference! (2nd) Clearly severely woozy brain from talking during TT. (3rd) Are the seizures on Monday, pee and TT issues praps all caused by histamine from the baked beans, despite DAO preventing direct reactions, and that’s decreasing serotonin? 6th: Phone alarm music causing hurt from listening? (8th) Onco appt. better in evening, worse at night and next morning, OK by 10th. (11th) Contrast orally plus injected (doc thinks the excipients) caused a week of overall Ache, but energy and stiffness OK-ish, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea and pain continuing till 18th, 7 days, then suddenly OK. Praps the oral one for gut, rather than the intravenous one (seemed not too bad in August), or praps cos too frequent/soon after the last. (25th) professional tooth cleaning.
(Feb) (3rd) stomach praps from apples & naltrexone, insomnia praps from naltrexone 3mg, pain praps from ezetimibe 3mg. Strain and sadness from guinea pig eating losing appetite and weight again, 7th better. (8th) LDN down to 2.25mg improved 4 issues, so increasing to 2.5, then 3mg was too much (cos next to GABA?). (15th) Dentist (cap-preparation) went well, but flare 17th-… from local anaesthetic (16th) temp cap fell of, (20th) got it put back on. (29th) Cap on.
(Mar) (23rd) and (Apr 3rd) still not at all recovered from dentist anaesthetic.
(3) DOCS: Click for latest (Mar 19th) details.)
DERM (Mar 19th) wart (but tea trea oil helped) on genetic enlargement under toenail.
CARDIO (Feb 2nd) Belly plaque still “25” OK, next April 26th with bloods. (Dec 11th) Rosuvastatin?
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.
Oct 21st (see 20th) pee frequency better now, drinking ~2.6L/d, Jan 10th: 1.75L/d. Nov 8th: URO: IPP/PD self-massage first, maybe shockwave therapy later. (Upon the very painful uro bladder exam Aug 7th followed the vertigo attack on the on 9th - connected?
(CVD med effects: Click for latest (Mar 21st) & next changes, and details...)
Mar 21st: Horse stance 70’’ ➔ 164/107-90 ➔ 139/94-69 ➔ 136/87-70, each inside of 1’. Confirms stopping candesartan.
Mar 17th BP getting too low, so stopped candesartan.
Thought Mar 17th: If BP spikes were from MCAS flare after bladder exam (in the summer), why is it now not spiking after local anaesthetic flare (in the winter)?
Atorvastatin Dec 16th- 0mg and ezetimibe Feb 4th- 0mg - trying 1mg again once LDN is sorted. BP , despite only ~1mg.
CANDESARTAN (BLOOD PRESSURE): Even alone starting Oct 24th was dreadful, but spreading over the day in ~0.5mg specks from 31st on worked, up to 4mg (5) since Nov 6th, but checking RR 24th/25th too low, so down to 2mg from Dec 10th. Dec 17th: BP at night sitting down (SBP ~100), so 2mg is a good compromise . (Jan 28th) been taking <1mg lately. Mar 17th: 0 since a few days now, cos BP low now.
ATORVASTATIN (LIPIDS): Nov 13th 1mg/d, + caused severe fatigue/Ache, stopped 24th, re-started 27th with specks of the middle without the mantle excipients good, but 28th 1+1 and then 2mg too late caused insomnia, so earlier in the day, increasing quickly from 29th to Dec 2nd: 10mg+, un-mantled, with first only slight problems, but increasing week of 4th, so Dec 10th-13th 0mg, 14th 5mg later likely caused pain 20:00-23:00… Summary without coating: Dec 2nd-9th: 10mg+, 10th-13th 0mg, 14th-15th 5mg, 16th- 0mg). Further trials.
EZETIMIBE (LIPIDS): Feb 3rd: muscle pain praps from 3mg, so 4th- 0mg.
Irritations:
- Every movement hurts, aches, is heavy, need to take time to deliberate (more than usual).
- Thirst: Seem to be back to 2L…
- long right loin stretches on veranda makes it very painful to get up again from the position, but improving.
- 0.6 instead of 0.3g GABA for B0, so 0.9g more today,
4) UNDER CONTROL ✅ (attention necessary (✅)): Carnitine Apr 14th-, EGCg Apr 13th-. Creatine Apr 9th- 2x5g, LDN Mar 21st- 3mg, Seizures slight, weekly & during TT from Mar 20th to Apr 2nd, then Apr 8th (3-4), Apr 22nd (2). Click for latest (Apr 23rd) & next changes...
Latest: Seizures increased since Feb, and weekly since Mar 20th.
Reduced vit. C to 3x400mg, like Masterjohn recommends. Nux vomica D12 helping for nausea from music/talk, sleep and bladder not much. Also for sleep: Cocculus and acidum nitricum later. Supp costs ~400€.)
1) GI, pee, local pains (incl. jaw & bladder), weather, dry mouth and drinking well under control: So no details at the moment.
(2) Seizures and esp. esophagus blocks fairly under control - click for details. Last SEIZURES: 1-2x/m - Apr 22nd (2) 8th (4), 2nd, Mar 28th, 20th & 2nd, Feb 19th & 14th & 3rd Jan 1st Dec 22nd & 2nd/3rd Nov 20th Nov 13th & 5th Oct (26th/27th Oct 18th/19th Sep 19th Aug 9th (vertigo day). July 17th. Last ESOPHAGUS BLOCK Oct 21st.)
Last focal seizures: Varying from 2-weekly (May-June, Oct-Dec, Feb-Apr: 11 / 5 / 12 / 18 / 8 / 5 / 6 / 14, so weekly mid-Feb and mid-Mar to mid-Apr, praps cos of creatine vs. GABA) to 4-weekly (before May, July-Sept, Jan). Increases from stress, histamine, and less GABA. Apr 22nd (2: after TT), 8th (4: errands,
eating, TT, after meeting with kids on 7th) 2nd (1, TT) Mar 28th (1, TT) 20th (1, TT) 2nd (2) Feb 19th (1) Feb 14th (1) Feb 3rd (1) Jan 1st (3) Dec 22nd (?2, slight) Dec 2nd (1) & 3rd (1) Nov 20th (1) Nov 13th (1) 5th (1) Oct (26th-)27th (1) Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), 2 slight focal seizures about Dec 22nd? Dec 3rd (1) 13:00 during TT, after feeling a bit seizure-ish, and not able to win: GABA my main suspect, cos of less sleep breaks. Dec 2nd (1) after the dizziness of 15’ of concert or from too little GABA at night. Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Oct 21st 2023. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th. Deleted further details on/from Dec 30th 2023, cos last block worth counting on Oct 21st. Mindfulness, care, stop eating whenever there’s the slightest esophagus pressure.
SELF-TREATMENT & SUPPS optimal, stable, but necessary, Carnitine Apr 14th-, Apr 13th EGCg, Apr 9th- creatine 2x5g (Mar 19th- 2g in the morning), Mar 21st- LDN 3mg, (Jan 16th: Less magnolia bark and pine bark cos of possible vertigo side effect. No ellagic acid (not convinced of use) or feverfew (serotonin and dizziness as possible side effect). Jan 16th: LDN 3mg. Jan 10th: ~29 supps + LDN (was 40) costs ~400€/m (was 350€/m) +20€/m cps. Last changes see before Aug 22nd.)
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept. Nov: salivating technique(s) for dry mouth:
Supps: Carnitine Apr 14th-, EGCg Apr 13th-. Mar 21st- LDN 3mg, Mar 19th- creatine monohydrate 2g before morning meal. If monohydrate doesn't work, then the malate form. Jan 18th: Reduced vit. C to 3x400mg like Masterjohn suggests. Jan 10th: 29 supps + LDN cost 400€/m (was 395€/m) +20€/m cps. Try creatine again when LDN is plateauing, if not the monohydrate then the malate form. 16th: no feverfew (reduces serotonin, possible dizziness), less magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: no ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h. Apigenin for sleep seldom. Dec 19th/20th: DAO working for walnuts, but only 10% (on 13th) for baked beans. No B2 lately. Nattokinase Nov 4th- : 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg, Dec 11th 1x2mg, 27th 2.25mg, 10th 2.5mg, 16th 3mg. Deleted details Dec 30th: Stopped eleuthero, cos of BP. NADH. Theanine 2x0.1g since about Sept. Last changes see before Aug 22nd. Probably not colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
No ‘research’ today
Quality of life: 90%
Lessons in self-care:
- Indoors 9:30-10:45? for 2x feeding, but opened window to hear robin.
- Trying to order books took a bit long, not right time, so stopped.
- Need to remember 3rd duvet after QCS.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
b) Birds:
(Every day cheer, song/calls/seen: Woodpigeons Robins Blackbird Sparrows Nuthatches Magpies Dunnocks Great&BlueTits Jacks ) Latest / earliest robin song: …21:00 / 5:00…
(Regular cheer, song/calls/seen: Greenfinch Chaffinch Chiffchaff Wren Collared dove)
- grey heron Tuesday morning heading South-East (zoo?)
- Unfamiliar bird call again, not cycling home from TT, but on a short errand 2x8’ cycling, so could tape it again. A song thrush I found out on a forum.
- robin in front of my window, flew thru to the garden, so could well have been ours.
- Blackbirds having a moss day again, turning over on the pathways and on the veranda above me.
- 4:45 No robins or any other bird, but 5:00 robins & blackbirds 1h before sunrise, not loud, same motifs as in the daytime, not like the churchtimes-article said “speaking” more…
c) Animals: (guinea pig antics . Redbrown squirrel )
Bank voles Insects: bees, bugs
- 2 bank voles just scarpered towards me under the veranda, so I’m now sitting “on” them… O.o
- Let the guinea pigs out whilst cycling so they’re out longer.
e) Human life: (Skip-Bo Wife )
f) Environment: (Outdoors .) HWB first, cos I seemed a bit too cold after QCS.
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