JayCS’s Fibro Blog

JayCS · January 15, 2024, 9:00pm

2024-01-16 Tuesday

Summary:

LDN (3mg): : no TT or walking, hardly cycling cos too nauseous and ill when I move. Energy possibly 25%+ .
Triggers: contrast dye - diarrhea, but firm before and after, nausea continuing. 3x DAO for 200g baked beans.
Cheer: Squirrels weren’t run over! Magpies! Jack cutely calling mate! New bud! No additional swallowing issues!

(V)LDN: Jan 16th- 3mg, despite vomiting yesterday. (Slowly up from Oct 1st ~0.07mg.) Click for effects/dosage...

Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and
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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: phoning 15' ➔ 70%/4 (nauseous) ❌, music 15' ➔ 70%/3 ❌, white lips 70-100% ❌, no TT, moving ➔ 80%/3?, but nausea (✅), SO post exertional malaise ("✅"), "post postural ache", "PPA" ✅, stiffness ✅, exhaustibility "75%" ✅ and sleep 8h38 ✅ ("PPA": 2 ✅). Energy profile: medium, with "3h rest", 0h very slow, 3h slow, 10h medium, 0h quick. Click for past months...

EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but improvement only if I stop atorvastatin for a few days.... 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): 8h38, up 2x (12'), all deep, except last hour off and on deep doze ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...

Sleep 23:25-8:15 Sum: h35+8h15-(7+5=)12’ = 8h50-12’ = 8h38

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Trigger contrast dye OK for energy & stiffness, worst esp. for pain, diarrhea, but firm yesterday, before and after, nausea continuing for days. Histamine foods: 3x DAO for 200g baked beans at 19:30 (✅). Strain ✅: phoning. Click for list...."

(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 and injected caused a lot of overall Ache, not too bad for energy and stiffness. (15th) fairly severe vertigo with walking problems and then 3h of vomiting.

3) DOCS: ONCO: #2 Jan 8th/11th: believes it's nothing docs can find, but just in case: contrast CT of torso Jan 11th, results per phone about 18th. CARDIO (Dec 11th): Rosuvastatin? Click for details.

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: Atorvastatin Dec 16th- 0mg ✅ - postponing further trials. BP ✅. Click for details...

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 . 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.

4) UNDER CONTROL ✅ (attention necessary (✅)) - Reducing magnolia bark and pine bark cos of vertigo side effect, leaving feverfew (serotonin and dizziness as side effect). Reduced histamine/DAO. Supp costs up from 350€ gradually since LDN to now 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 - 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. 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 - NEW Jan 16th: Reducing magnolia bark and pine bark cos of vertigo side effect. Jan 9th: got B5, B9/12, rhodiola, honokiol and resveratrol. Leaving ellagic acid (not convinced of use) and feverfew (serotonin and dizziness as 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 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: leaving feverfew (reduces serotonin, dizziness), reducing magnolia bark and pine bark cos of dizziness/vertigo. 11th: ordered GABA, L-carnitine and akilwinter cream. 10th: leaving ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h, so new. 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: 3-4 15’ things: shop, garden, phone.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
a) All 3 hydrangea are budding already, incl. the 2 that didn’t come last year.
ba) Magpie alarm!
bb) Jack cutely calling for his mate all day! (Hope they find each other soon!)
bc) The tip of the female blackbird’s beak is turning yellow, rest is brown. Sitting fairly close, calmly (except when there’s an alarm like there was today, maybe from the magpie’s, couldn’t see or hear anything else.)
c) 2 black squirrels weren’t run over! Longest sprouts now have a bud, so I’ll be able to identify which of 4 possibilities they are.
c) The piggies always make me laugh.
e) Human life: Nice phoning with mate, even if short.
f) Environment: Nice outside with a hot water bottle.
g) Body: No additional swallowing issues from the vomiting, like when I got gastritis.

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

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

JayCS · January 16, 2024, 6:25pm

2024-01-17 Wednesday

Summary:

LDN (3mg): : Energy seems 25%+? , no TT, walking or cycling, don’t feel up to it yet.
Triggers: Still contrast . 50g of baked beans unprotected.
Cheer: Magpie! Both blackbirds sit long! Robin! 3 squirrels! (sharing wife wife!) Bank vole? 40 syringes per Harley meal, +40g! Energy 30% despite feeling ill when I move!

(V)LDN: Jan 16th- 3mg, despite vomiting Monday morning, can't see any (additional) problems. (Slowly up from Oct 1st ~0.07mg.) Click for effects/dosage...

Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and
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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 70%/3 ❌, music 15' ➔ 70%/3 ❌, white lips 70-100% ❌, no TT, moving ➔ 80%/3 (✅), but minimal cos of nausea, SO post exertional malaise (✅), "post postural ache", "PPA" ✅, stiffness ✅, exhaustibility "70%" ✅ and sleep 8h30 except 20' NSDR ✅ ("PPA": 2 ✅). Energy profile: medium, with "12h rest", 2h very slow, 2h slow, 0h medium, 0h quick. Click for past months...

EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but improvement only if I stop atorvastatin for a few days.... 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): 8h30, up 3x (20'), all deep, except NSDR 20' of that. ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...

Sleep 23:25-6:20, with NSDR -8:15 Sum: h35+8h15-(2x5+10=)20’ = 8h50-20’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Trigger contrast dye OK for energy & stiffness, worst esp. for pain. This time I had both oral contrast dye for my gut and intravenous for my lungs, so probably both iodine and radioactive. In August it was only intravenous, so I guess it was the oral one, I think, iodine, that explains why the strong reaction this time. Diarrhea day #5 after the vomiting day #4, but firm before and after, nausea continuing for days after all fits to gut. Histamine foods: 50g baked beans (✅). Strain ✅: Click for list...."

(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 and injected caused a lot of overall Ache, not too bad for energy and stiffness. (15th) fairly severe vertigo with walking problems and then 3h of vomiting.

3) DOCS: ONCO: #2 Jan 8th/11th: believes it's nothing docs can find, but just in case: contrast CT of torso Jan 11th, results per phone about 18th. CARDIO (Dec 11th): Rosuvastatin? Click for details.

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: Atorvastatin Dec 16th- 0mg ✅ - postponing further trials. BP ✅. Click for details...

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 . 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.

4) UNDER CONTROL ✅ (attention necessary (✅)) - Reducing magnolia bark and pine bark cos of possible vertigo side effect, leaving feverfew (serotonin and possibly dizziness as side effect). Reduced histamine/DAO. Supp costs up from 350€ gradually since LDN to now 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 - 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. 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 - NEW Jan 16th: Reducing magnolia bark and pine bark cos of possible vertigo side effect. Jan 9th: got B5, B9/12, rhodiola, honokiol and resveratrol. Leaving ellagic acid (not convinced of use) and 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 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: leaving feverfew (reduces serotonin, possible dizziness), reducing magnolia bark and pine bark (cos of possible dizziness/vertigo). 11th: ordered GABA, L-carnitine and akilwinter cream. 10th: leaving ellagic acid (not convinced of use). Dec 22nd/23rd: stopping ginkgo caused hearing/tinnitus/balance problems for 15h, so new. 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: Completely cold showering is too hormetic (challenging) for me at the moment, another sign I’m not well, so I’m starting lukewarm ending lukecold twice, then fully cold for a few seconds at the end to seal it off and make sure the warmth doesn’t rebound too much.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
ba) Single magpie in the garden, as opposed to the pair that was visiting this morning.
bb) Blackbird female calm long again, except when defending territory.
bc) Blackbild male also calm and long in and on the balcony food pot.
bd) CockorHenRobin feeding too.
ca) Lots of squirrels, not just the 2 black ones, at least one red one too.
cb) Thought I heard and saw bank vole jumping into the food bowl, before blackbird and robin, but couldn’t confirm. There quite often cos takes the sunflowers into the small bird box like im the summer, not in the cellar much the past week, no droppings.
cc) Harley is now eating 40 syringes per meal, and still eating a bit in between too.
cd) Friday morning: All the 3 squirrels frolicing at once in the cherry, one of the jumps I could see in slomo, beautiful ballerinas.
e) Human life: My wife called me to see the squirrels, nice to share. I shared their risky manoeuvre yesterday, too.
f) Environment: My wife seeing the squirrels put me on to going down in pyjamas to put out water, after I’d gotten the frozen pot saucers in yesterday, and new sunflower seeds. Good to be in the fresh air “early”.
g) Body: Energy seems full 30% Friday morning, but nausea and ill feeling still same - trying TT.

Foggies: I’m getting the hang of preparing and tidying up the guinea’s feeding time.

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

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

JayCS · January 18, 2024, 10:01pm

2024-01-18 Thursday

Summary:

LDN (3mg): : Energy now seems back up to 30% , confirmed by TT 3:1 (), some walking / cycling would’ve been OK, but only 2x5’ cycling to 1x 15’ shop and talking 30’ + 10’.
Triggers: Contrast dye (excipients): Energy up, less ‘ill’, still often a bit nauseous (), occasionally slightly pukey. Food tests: 50g baked beans, 2g strawberry in yogurt, quarter mandarine, semi-sour apples all OK .
Cheer: Better! Shooting star! Jupiter! Starry-bright! Jay twice (fatball)! Sparrowhawk or buzzard calling! Magpie! Birds bathing in icy water! ‘New’ bird calls! ‘New’ bird! Blackbird cock subsong with alarm calls! Blackbird male: juvenile brown wings! Female with thrushily spotted breast! Pigeon cooing despite frost!

(V)LDN: Jan 16th- 3mg. (Slowly up from Oct 1st ~0.07mg.) Click for effects/dosage...

Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and
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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 70%/3 ❌, music 15' ➔ 70%/3 ❌, white lips 70-100% ❌, TT 3:1 (could've easily been more, but no picking up balls, moving 20%, talking 10%, counting 20%) ✅, moving ➔ 80%/3 (✅), but still pretty nauseous, esp. after looking at CT-CD and trying to watch short bits of a wildlife film, cos of nausea, SO post exertional malaise ✅, "post postural ache", "PPA" ✅, stiffness ✅, exhaustibility "70%" ✅ and sleep 6h45 - deliberately short, see if that feels better (cos I always feel awake after 7h) and helps get to bed earlier ✅ ("PPA": 2 ✅). Energy profile: medium, with "6h rest", 0h very slow, 7h slow, 3h medium, 0h quick. Click for past months...

EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but improvement only if I stop atorvastatin for a few days.... 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): 6h45, up 3x (15'), all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...

Sleep 23:45-6:45, Sum: h15+6h45-(3x5=)15’ = 7h-15’ = 6h45

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Trigger contrast dye OK for energy & stiffness, worst esp. for pain. Energy better today (Friday even more), feeling less ill, still often a bit nauseous, esp. before meals (as often anyway), and after scroilling thru the pics of my CT-CD and trying to watch a few minutes of videos, but better, altho still occasionally slightly pukey. Doc thinks the excipients rather than the contrast dyes themselves. Praps the oral one for gut, rather than (like August) the intravenous one. Vomiting 3h day #4, diarrhea once day #5, firm before and after, nausea continuing for days after all fits to gut. Histamine foods: 50g baked beans, 2g strawberry in yogurt, quarter of a mandarine ✅. Need to watch apples, diversifying is a bit on the sour side for stomach and teeth, and the guinea pigs aren't eating them anyway which is why I started that (❌). (✅). Strain ✅: 10' phoning with doc + 2 more short calls, 20' video conference for work. Click for list...."

(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 and injected caused a lot of overall Ache, not too bad for energy and stiffness, then (15th) fairly severe vertigo with walking problems and then 3h of vomiting, diarrhea the following day, but firm before and after, nausea continuing for days after, till (?). Bit better Friday 19th.

3) DOCS: ONCO: #2 Jan 8th/11th/18th: believes it's nothing docs can find, nothing found in bloods or contrast CT, whether cancerous, immune or anything else. Reaction probably excipients rather than the contrast itself, he thinks, didn't let on what it was, didn't deny iodine, but did radioactivity, a misunderstanding of mine. CARDIO (Dec 11th): Rosuvastatin? Click for details.

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: Atorvastatin Dec 16th- 0mg ✅ - postponing further trials. BP ✅. Click for details...

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 . 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.

4) UNDER CONTROL ✅ (attention necessary (✅)) - Supps back to normal after reducing to vital ones during the nausea, but carnitine still reduced cos order is taking longer than a week. Reducing magnolia bark and pine bark cos of possible vertigo side effect, leaving feverfew (serotonin and possibly dizziness as side effect). Reduced histamine/DAO. Supp costs up from 350€ gradually since LDN to now 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 - 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. 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 - NEW Jan 16th: Reducing magnolia bark and pine bark cos of possible vertigo side effect. Leaving ellagic acid (not convinced of use) and 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 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: leaving feverfew (reduces serotonin, possible dizziness), reducing magnolia bark and pine bark (cos of possible dizziness/vertigo). 10th: leaving 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) Had a quick look for vertigo after injury, but that’s usually head injury, not a system injury like mine.
b) Contrast dyes for X-rays (& CT = CAT) seem mainly iodine or barium (not radioactive like I thought), for MRIs gadolinium.

Quality of life: 90%

Lessons in self-care: Wasn’t sure if I’m up to TT, it was a test, but after 2 games I realized 4 would be no problem, after 4 I could have gone on. Always good to try at least a moment.
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
ba) Jay twice (fatball),
bb) sparrowhawk or buzzard calling,
bc) 2 magpies,
bd) our blackbird hen and later
be) robin bathing in the cold water I’d put out,
bf) several bird calls I don’t recognize, possibly a great woodpecker too,
bg) a bird brown top white with brown birts under in the feeding box after a fairly high one-syllable call,
bh) robin,
bi) our blackbird cock subsong with 5+ alarm calls built in ‘for fun’, and later without, but used the alarm calls properly later too,
bj) he’s still got a juvenile brown touch to his wing feathers,
bk) our female has a thrushily spotted breast, didn’t realize that either (confirmed both on wikipedia),
bl) Pigeon cooing short despite frost!
bm) Woodpigeon BobStar, Duey’s wife, is back,
bn) they sat in the feeding boxes and ‘slept’ one left, one right.
bo) Both have changed a little, BobStar’s neck white has become a little more symmetrical (left side less Bob-straight, more like the right, Starry), but still without her characteristic visible black wing stripe, whilst Duey’s seems broader, maybe 7-8 stripes rather than 6 in the summer, and possibly a bit less symmetrical, esp. the back of the neck.
c) A pic of a bug end of December I’ve narrowed down to probably being a weevil / snout beetle, I hope not one that’s bad for any good plants, but could well be rhododendron - which were completely OK this year, no problems if they just eat leaves from the back and sides.
e) Human life: (TT laughter. Skip-Bo.) Wife:
f) Environment: (Outdoors.) shooting star (= meteor) Venus(?) star-bright! (but also car noises overhighly audible)
g) Body: (Energy - increasing.)

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

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

JayCS · January 18, 2024, 10:02pm

2024-01-19 Friday

Summary:

LDN (3mg): : Energy 30-32%! (21st: corrected energy profile accordingly), TT : , walking / cycling ’ 6x5-8’ (). Was that energy more from increasing LDN to 3mg or subjective cos it was down before?
All time weight low of 73.3kg Saturday morning, my wife worrying and thinks it’s mainly cos of caring for Harley.
Triggers: Slight nausea & dizziness from contrast excipients(?) (). Food: Walnuts. ()
Cheer: dunnock back! Aggressive woodpigeon battle, ending in victory cooing.

(V)LDN: Jan 16th- 3mg. (Slowly up from Oct 1st ~0.07mg.) Click for effects/dosage...

Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and
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.
Additives: white capsules with TiO2 (HPMC with SiO2).

[details=“1) MAIN ISSUES: talking 2’+5’ ➔ 70%/4 , longer and easier with kids, with lots of laughter 60’ ➔ 80%/2 , music 15’ ➔ 70%/3 , white lips 70-100% (e.g. after shaving, cleaning floor). TT 4:0! (moving 20%, talking 10%, counting 20%) , moving (bringing, fetching, 2x5’ cycling, bit strained on back,
2h! with Kids, in café and on playground ➔ 80%/3 () until after 2h finally 70%/5 (), SO post exertional malaise (), “post postural ache”, “PPA” , stiffness , exhaustibility “70-68%” and sleep 7h30, up 3x (15’) - again short, let’s see (“PPA”: 2 ). next: nattokinase: fx, sfx, €? Energy profile: medium, with “4h rest”, 0h very slow, 2h slow, 9h medium, 1h quick. Click for past months…”]

EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but improvement only if I stop atorvastatin for a few days.... 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, up 3x (15'), all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...

Sleep 23:05-6:50, Sum: h55+6h50-(3x5=)15’ = 7h45-15’ =
self-care: forum worry to overlay work worry before sleep.
Kids: 2h, then breakdown. Body: Energy higher, stiffness one type higher (upstairs, getting up, lifting leg, back from top down to glutes), one lower (downstairs, cycling). Forgot A3 Thursday eve.

[/details]

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Jan 11th-18th: contrast dye (doc thinks excipients), then OK, except some nausea. Histamine foods: (✅). Strain ✅: Click for list...."

(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. 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.

3) DOCS: ONCO: #2 (Jan 8th/11th/18th): nothing in bloods or contrast CT, believes it'll be nothing docs can find, the week of reactions likely from some excipient(s). CARDIO (Dec 11th): Rosuvastatin? Click for details.

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: Atorvastatin Dec 16th- 0mg ✅ - postponing further trials. BP ✅. Click for details...

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 . 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.

4) UNDER CONTROL ✅ (attention necessary (✅)) - Less carnitine cos order taking ages. Less magnolia bark and pine bark cos of possible vertigo side effect, no feverfew (serotonin and possibly dizziness as side effect). Less histamine/DAO. Supp costs up from 350€ gradually since LDN to now 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 - 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. 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 - NEW 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 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:
Reasons to be cheerful:
a)-d) Plant, bird & animal life:
b) Birds:
ba) dunnock definitely back again.
bb) Aggressive woodpigeon battle for our feeding boxes, ending in victory cooing.
bc) But seems a new one won, with green at the beginning of the white neck patch.
bd) But then all up into the cherry anyway, 5-6, quite a bit of to and fro all morning.
be) Female woodpigeon partly on nest towards the street, not BobStar, but also without the black wing stripe very pronounced forehead.
bf) Magpie.
bg) Carrion crow.
bh) Thought a new bird call, but seemed to come from GreatTits.
c) Animals: Harley eating loads again, didn’t tally, but often around 40 1l syringes per meal
e) Human life: (TT laughter. Skip-Bo.) Wife: nice talks.
f) Environment: (Outdoors.) Quite a bit.
g) Body: (Energy.)
Simplified: Managing to combine tasks a lot better.

Click for development/summaries and see profile...

More details before Aug 22nd.
Entry changes (June 19th 2023)
Biggest successes (June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023

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

JayCS · January 19, 2024, 3:29pm

2024-01-20 Saturday

Summary:

LDN (3mg): : Energy 30% (“pity”, not 32%, or rather only sometimes and in the evening quite a bit less), TT 2:2 , walking / cycling 30’, seemed OK at first, harder in the evening at shop (), it again feels like on Friday a certain kind of stiffness is better (downstairs), a certain just as bad (upstairs), along with variability.
Triggers: Main? Food?
Self-care: Successful distraction from potentially worrying! Too much? Up earlier! 2L/d!
Cheer: Noting more! Harley ate 181 syringes of mush! (details how) Birds ice bathing! Woodpigeon battles. Binoculars better! Bank vole nest. Red squirrel cute behaviours. Nice colleague mails. (Luke-)cold showering is Iron Man.
Simplified: Better day start! Distributing stuff effectively!
Foggies: Often clear-headed!

(V)LDN: Jan 16th- 3mg. (Slowly up from Oct 1st ~0.07mg.) Click for effects/dosage...

Forgetting Dec 23rd caused big energy dip immediately, so there’s no drug level, it works day to day. (It’s constantly and
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.
Additives: white capsules with TiO2 (HPMC with SiO2).

1) MAIN ISSUES: talking 10' ➔ 70%/3 ❌, music 25' ➔ 70%/3 ❌, white lips 70-100% ❌, TT 2:2 (moving 20%, talking 10%, counting 20%) ✅, moving (cycling earlier OK, strangely more difficult in the evening, different kind of "stiffness" ➔ 80%/3 (✅), SO post exertional malaise (✅), "post postural ache", "PPA" ✅, stiffness ✅, exhaustibility "70%" ✅ (68% only sometimes, but in the evening quite a bit less) and sleep 7h50 ✅ ("PPA": 2 ✅). Energy profile: medium, with "4h rest", 0h very slow, 2h slow, 10h medium, 0h quick. Click for past months...

EXHAUSTIBILITY: Stably better from LDN since Oct 1st at 20%+, but improvement only if I stop atorvastatin for a few days.... 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): 7h50, up 3x (15'), all deep ✅, everything else OK ✅ (22 issues under control), 80%/2, ➔ getting up: 80%/2 ✅. Click for details...

Sleep 23:00-tog-7:05, Sum: 1h+7h05-(3x5=)15’ = 8h05-15’ = 7h50

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Jan 11th-18th: contrast dye (doc thinks excipients), then OK, except some nausea. Histamine foods: just a little, with no problems ✅, appetite seemed OK. Strain ✅: Colleague mail, turned out OK. Click for list...."

(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.