JayCS’s Fibro Blog

[JayCS]

2023-10-29 Sunday - recovery?: Possibly slightly better again. CVD med side effects? Better after longer sleep. LDN?: jumping up to 0.5mg from 20th on: OK.

What … worked / went wrong … today:
BP meds - no problem after long sleep. Big hamster wheel due to the plant identifying tool having been improved.

Habit encouragement… :
Time (= stress) management: Blog earlier , forums less , jump off hamster wheels () - plant identifying, 3rd meal 18:00-19:00 (), altho I was going there, then got distracted with hunger but lack of appetite .
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Saturday night , sleep Sunday night .

Today working mainly on … time management , energy, esp. via LDN .

(V)LDN - added fine motor skills & available short term energy

Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th-19th 10:00 0.25mg. 20th- 0.5mg
VLDN for:

1. Energy up from 10% to 18%: for activities - would have been quite OK, walking: up from 5’ to 30’ - yep, listening: up from 3’ to 15’ () - nope, no TT mate available, shorter recovery times - yep, all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache - OK-ish, local: lower back - OK-ish despite sitting much too much, less - yep, hangover - nope.
3. Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - .
5. Nothing really since Oct 18th , except 20th: hangover 3h.

How to continue: Increase to 0.75mg or to 1mg on 29th?

CVD med effects?:

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅ - yep. no TT mate available, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "84%" ✅ and sleep ✅ - 7h50, up 4x (37'), all deep except nervous the last hour cos of mate coming round. Slight sore throat, but no more thoughts of a cold or anything. Had to cream my dry hands, cos I'd washed them a bit more, but that's well in balance too. Click for details:

EXHAUSTIBILITY today: “84%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 2h very slow, 5h slow, 2h30 medium, 30' quick

SLEEP (click for details): 7h50, up 4x (37'), all deep. ✅/❌, everything else OK ✅/❌, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:45- 0:30 4’ 2:09 17’ fl13’ 4:28 12’ fl9’ 6:12 4’ -7:12 Sum: 7h12+1h15-(4+17+12+4=)37’ = 8h27-37’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Wife crying a lot cos she believes we'll lose Harley soon, as well maybe as 2 close people and worrying about my deteriorating conditions - I'm trying to distract and keep from being sad. And mate coming around early Monday morning made me nervous. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Oct 26th: GP#2 say an onco appt in my home town will take 3 months, but further away will be too taxing. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, 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: 80%

Lessons in self-care:
a) Gotta keep sadness under control, not too much, not too little.
b) To keep nervousness out of bed I’d best not agree to meetings before 10:00.
Reasons to be cheerful: Hard today, sad cos of Harley
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-10-30 Monday - recovery?: Nope. CVD med side effects? Yep. LDN?: 20th 0.5mg: Not increased yet.

What … worked / went wrong … today:
CVD side effects and sad about Harley’s condition.
Finding distraction in identifying more plants.
Trying to lie together was partly great, but much too little sleep.

Habit encouragement… :
Time (= stress) management: Blog earlier , forums less , jump off hamster wheels (identifying plants is a pretty deliberate hamster wheel), 3rd meal 18:00-19:00 .
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Sunday night , sleep Monday night .

Today working mainly on … time management , energy, esp. via LDN , keeping spirits up ().

(V)LDN

Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th-19th 10:00 0.25mg. 20th- 0.5mg
VLDN for:

1. Energy up from 10% to 18%: for activities - sort of up sort of not like days before, walking: up from 5’ to 30’ - could have I think, listening: up from 3’ to 15’ () - 60’ with mate was difficult but talking was harder so I curbed myself there, no TT mate available, stiffness - fine, shorter recovery times () - took long but I think cos of the BP med, all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache - together with the heaviness from the CVD meds, and talking plus feeding guinea pig, local: lower back - fine, less - yep, hangover - no.
3. Muscles: eyes = vision () - terrible I think from the BP med, bladder: pee frequency & urge () - OK-ish.
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - .
5. Nothing really since Oct 18th , except 20th: hangover 3h.

How to continue: Not sure if/when to increase now (Oct 30th) cos of the CVD med effects. But maybe I should out of desperation try doubling LDN and see if it compensates them?

CVD med effects?:

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅ - great. no TT mate available, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌ - had to curb myself more and more when mate was there, music 5' ➔ 70%/4-5 ❌. White lips 80% (❌). Exhaustibility "85%" ✅ and sleep ✅ - 5h30, up 2x (35'), all deep, plus praps 1h, at most 2h, of dozing, but my heart thumping, which even my wife told me after she was worried about. But I feel so good Tuesday that maybe there was more dozing time, unless it's just cortisol up. So careful tonight! ❌, click for details:

EXHAUSTIBILITY today: “85%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 2h very slow, 4h slow, 3h30 medium, 30' quick

SLEEP (click for details): 5h30, up 2x (35'), all deep, plus praps 1h, at most 2h, of dozing. But I feel so good that maybe there was more dozing time, unless it's just cortisol up. So careful tonight! ❌, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 23:05-0 tog! 0:05 149/99 (60) 121/76 (55) wide awake, so fl40’ 0:45-0 wife’s bed still heart thumping, no sleep, so cold shower, 1:05- NSDR (max. 35’) 2:00 6 2:08-
4:02 4’ sore throat from being a bit too hot, bedclothes off too long., calendula essence helped. Nostrils 10% a lot of the night. 6:03 31’ fl25’ -8:13 8:40-8:51
Sum: 8h13-2h08-(4+31=)35’+30’+30’+10* = 6h05-35’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) (❌ - whoops I haven't been using the ❌ the past days I think!): nervous cos of mate, sad cos of Harley. Tongue burning (tip and left this time) after 100g of baked beans from a glass that had been open about 2 days old, so maybe the age explains the histamine reaction, cos the amount was always OK the past few days (but spreading over a few days was good last time, let's see how long the tongue takes). Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Oct 30th: GP#2 have organized an onco appt Jan 8th, so in 3 months, but not 20 mins away. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today?

Cranberries are low histamine, I thought they might be high, which’d’ve explained my burnt tongue, but that’s then only from the baked beans.

Quality of life: 80%

Lessons in self-care: Nice night all the same. Got to think up something for the CVD meds.

Reasons to be cheerful:
a) Plant/fungi life: Identifying lots is fun altho it takes a long time.
b) Bird life: -
c) Animal life: Squirrel making its funny noises in our cherry like an electric impulse.
d) Plant, bird & animal life: -
e) Human life: Good to be together.
f) Environment: Slightly warmer and a good bit of lovely sun.
g) Body: Tough, but fluid.
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-10-31 Tuesday - recovery?: Slightly better with less CVD med side effects? LDN?: 20th 0.5mg: Increasing tomorrow.

What … worked / went wrong … today:
Splitting up the CVD meds may be working.

Habit encouragement… :
Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00 - no, but shortly after 19:00 which is good enough considering 1st meal was much later from sleeping later.
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 80-90%-ish (), energy today (, relatively), sleep Monday night , sleep Tuesday night (bit short, but not too tired Wednesday).

Today working mainly on … time management , energy, esp. via LDN , keeping spirits up () - wife and I working together on that, having crying times, but also deliberating our plan.

(V)LDN

Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th-19th 10:00 0.25mg. 20th- 0.5mg
VLDN for:

1. Energy up from 10% to 18%: for activities - yep, walking: up from 5’ to 30’ - yep, listening: up from 3’ to 15’ () - , TT fine motor skills and available short term energy , stiffness - yep, shorter recovery times - yep, all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache - yep, local: lower back () - OK, less - yep, hangover - nope.
3. Muscles: eyes = vision () - slightly better, bladder: pee frequency & urge () - better.
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - .
5. Nothing really since Oct 18th , except 20th: hangover 3h.

How to continue: Yes, like thought I’ll try doubling LDN tomorrow and see if it compensates them, as well as spreading the “candy”.

CVD med effects?:

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Starting to spread the “candy” (candesartan) over the day in about 0.5mg specks worked, I think I felt it a little after 2nd meal, but that got better again.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 4:0 (moving 30%, talking 30%, counting 0%) ➔ 80%/3 ✅, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep (❌) - 6h47, up 4x (1h20, of that 61' plant identifying), all deep ✅, but taut from too intense plant identifying, click for details:

EXHAUSTIBILITY today: “82%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 2h very slow, 2h slow, 5h30 medium, 30' quick

SLEEP (click for details): 6h47, up 4x (1h20, of that 61' plant identifying), all deep ✅, but taut from too intense plant identifying ❌, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 23:00-
0:05 17’ fl15’
1:05 13’ fl10’
1:26 51’ Traumeel on underarm spot 10cm from left elbow and rib area under/behind left shoulder, after pressing/massaging quite a bit all evening. Taut from too much plant identifying. 6 30’ fl21’
4:25 19’ fl15’ .7:07 20’ fl15’ Sum: 1h+7h07-(17+13+51+19=)100’ = 8h07-1h20 =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Sorrow, lack of sleep was OK. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Oct 30th: GP#2 have organized an onco appt Jan 8th, so in 3 months, but only 20 mins away. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅) - elbows a bit whilst on a walk with my wife, but not as much as usual, and just twisting them for a few minutes each they were OK again, no knee problems. Worked on jaw a little again. At 1:30 Traumeel on underarm spot 10cm from left elbow and rib area under/behind left shoulder, after pressing/massaging quite a bit all evening. The underarm spot isn't a problem, but the rib makes me feel iller):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today?

Only bits’n’bobs.

Quality of life: 85%

Lessons in self-care:
a) Very pleased to have thought up to spread the dose over the day.
b) In the evening and night a bit strained, I need to jump out of the plant identifying wheel soon.
Reasons to be cheerful:
a) Plant/fungi life:
aa) Saw a brilliant mushroom plate sized patch yesterday with 3 tiers of them, what a work of art.
ab) The balcony trough now has even more mushrooms.
ac) More and more identifying, and got advice for a plant too.
b) Bird life: Wife and I listened to a robin for a few minutes on our evening walk.
c) Animal life: Harley is so cute. Whether we lose him or not, we are enjoying interacting with him, partly as farewell, trying to give him as good time as possible, spoiling him a bit. He’s ripping around at a bit of paper at the moment, after having been fed up a little more than the past few ‘meals’, playful and coltish as ever. I suggested to give him some more liquid care stuff, my wife getting her head around it now wants to give it a try - working well up to now.
d) Plant, bird & animal life: -
e) Human life: Nice walks and talks with wife.
f) Environment: Much more sun than was harbingered.
g) Body: Nice to be back with daily table tennis and my body coping with the small dose ‘candy’.
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-01 Wednesday - recovery?: possibly, CVD med side effects?: by pulverizing, LDN? (Nov 1st on 2x0.5mg): maybe slightly better.

What … worked / went wrong … today:
Playground with grandkid an hour was brilliant: balancing (good treatment!), swinging (small mat swing with little effort), talking with statue were all things, elating.

Habit encouragement: time management (✅), self-treatments ✅.

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00 ()
Self-treatments: Horse stance , balancing - 20’ with grandkid, doing much better.

How was I today?: Feeling 75-85%-ish (), energy today (, relatively), sleep Tuesday night , sleep Wednesday night .
Mainly working on time management , energy with LDN , keeping spirits up ().

(V)LDN: Nov 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ & heaviness ✅ incl. for walking ✅, fine motor skills (✅), stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. No more side effects ✅.

Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th-19th 10:00 0.25mg. 20th- 0.5mg, Nov 1st on 2x0.5mg.
VLDN for:

1. Energy up from 10% to 18%: for activities - definitely, walking: up from 5’ to 30’ - playground an hour is walking quite a bit, listening: up from 3’ to 15’ () - may be getting slightly better, TT fine motor skills and available short term energy but somehow not enough to compensate the wet table, stiffness - definitely, shorter recovery times - definitely, all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache - definitely, local: lower back - yes, less () - rib and forearm pains improving from treatment and movement, hangover - no.
3. Muscles: eyes = vision () - better, bladder: pee frequency & urge () - OK-ish.
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - better after less evening screen time.
5. Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and amounts of 1-2.5 mg once a day took all LDN energy tooi.

Oct 24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Starting to spread the “candy” (candesartan) over the day in about 0.5mg specks worked, I think I felt it a little.

1) SYMPTOMS: Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 2:2 (moving 30%, talking 30%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), playing with grandkid for 60' ➔ 90%/5 (✅)/❌, talking 60' with son together with my wife, moving helped ➔ 80%/4 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅ - 7h40, up 3x (48'), all deep, sore throat 60%, 4 possible reasons see details of details of details. Only 3 short sleep breaks. Bit tired, but up at 7 trying to pull sleep forward, bed at 22:00, click for details:

EXHAUSTIBILITY today: “82%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 2h very slow, 2h slow, 5h30 medium, 30' quick

SLEEP (click for details): 7h40, up 3x (48'), all deep. Bit tired, but up at 7 trying to pull sleep forward, bed at 22:00. ✅/❌, everything else OK ✅/❌, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:30-
23:43 13’ fl8’
2:25 30’ 6
5:10 5’ strange: no idea what sore throat 60% is from. Forgetting 2nd pair of trousers until 2? Forgetting to put the heating on? Uncovered myself without realizing? Forgetting my 2 loop scarves some time yesterday and it only seeming warm enough? (But 18°C as ever all the same.) Umckaloabo and calendula essence.
-6:58 woken by our bird song clock now resounding in the bathroom… sore throat down to 30%.
Sum: 6h58+1h30-(13+30+5=)48’ = 8h28-48’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Annoyance of unexpectedly having to pay pay 1-2 big hospital bills is something I'm only going to clarify in the mornings, so next step early tomorrow, phoning the hospital. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: (Nov 2nd: Hospital bills 1200€ and 500€ unexpected. I shouldn't have asked for treatment by chief physicians, didn't make enough difference.) Oct 30th: Onco appt scheduled for Jan 8th - so time far away, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Quality of life: 90%

Lessons in self-care:
a) Playtime was well worth the pain, and recovery was pretty quick, afterwards I could still get a meal for my wife 5’, feed up Harley and go to a shop 10’ - it was a lot, but not too much.
b) Brought down plant identifying time, incl. in the evening and at night.
Reasons to be cheerful:
a) Plant/fungi life: More identifying.
c) Animal life: Squirrel munching on pavillon near me so I could take many pics.
e) Human life: Great with grandkid, one of the funnies was when we went into the café to go toilet and she very nicely asked if we could do so, and thanked on the way out, grins all over. Another was a totally different toddler who wanted to talk to me called me granddad, laughter again, his mum tried to explain that that’s not my name. When I manage to actively play, however slowly it’s fun how many kids are excited and either want to play with us too, or like today at least want to interact with me, tell me things, look at me. The parents often thank me. Made my wife and me think about parents nowadays hardly playing with kids on the playgrounds, even if they’re not on their phones. I’ve often defended them, thinking it’s only sometimes, but more and more I get the feeling it’s an exception for parents to play properly with their kids. I’m not sure of all the reasons, I just know I don’t care what people think. My son is similar actually, altho he’s bigger than me.
f) Environment: I quite like this stormy rainy autumn weather, altho others are complaining. Just got to make sure I get my sore throat down again.
g) Body: I was able to hold/carry my grandkid in my arms and hug for a few minutes, and we kept my speed down while playing, but I was able to do everything we felt like doing, which was wonderful.
Simplified: Summarizing more things in these blog entries now, deleting bits that aren’t relevant that day, altho I spose it’s always good to be conscious of the framework, like all of the many areas we can be cheerful about, lest we forget, which most of us do.

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-02 Thursday - recovery?: slightly better, despite 1h playground yesterday. CVD med side effects? Down by spreading, despite praps increasing very slightly. LDN? (Nov 1st on 2x0.5mg): Doubling may be working, didn’t cause side effects at first, not even sleep like I feared, but I’m getting more and more agitated and GI problems over night.

What … worked / went wrong … today:
Brought excitement down a bit more, but still a lot to go.

Habit encouragement: time management (✅), self-treatments ✅:

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels (), 3rd meal 18:00-19:00 .
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 85-90%-ish (), energy today (, relatively), sleep Wednesday night , sleep Thursday night () - too short.
Mainly working on time management , energy with LDN /, keeping spirits up /().

(V)LDN: Nov 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ (cycling 60'!) & heaviness ✅ incl. for walking ✅, fine motor skills ✅, stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. Side effects ❌, overactive, hyper, agitated, heartburn, diarrhea, weight decreasing. Click for details on dosage and symptoms:

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.
VLDN for:

1. Energy up from 10% to 18%: for activities - I’d say 20% considering cycling 60’, walking: up from 5’ to 30’ - , listening: up from 3’ to 15’ () - I’ve been regularly re-training listening to music in very small doses but shouldn’t overdo it, TT fine motor skills and available short term energy , stiffness - fine, shorter recovery times - good, all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache - OK-ish, local: lower back - good, less - only short, hangover - nope.
3. Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - .
5. Nothing really since Oct 18th , except 20th: hangover 3h, but getting more agitated & heartburn Nov 2nd, diarrhea morning 3rd.

CVD med effects?: Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 (moving 30%, talking 30%, counting 0%) ➔ 80%/4 (✅), gardening/moving / cycling slowly 60'! ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 15' ➔ 80%/3 (✅) - better. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep (✅) - 6h28, up 3x (1h22), all deep, but too short, awake early, maybe from doubling LDN. ✅, heart thumping, organic cotton underpants itchy I guess from dye, sore throat 30% from cold but sinuses 20% from warmer ❌, click for details:

EXHAUSTIBILITY today: “82%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 2h very slow, 2h slow, 5h30 medium, 30' quick

SLEEP (click for details): 6h28, up 3x (1h22), all deep, but too short, awake early, maybe from doubling LDN. ✅, heart thumping, organic cotton underpants itchy I guess from dye, sore throat 30% from cold but sinuses 20% from warmer ❌, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:35-
NO PLANT ID AT NIGHT - MUCKS UP MY NIGHT & DAY
23:45 6 55’ heart thumping at least 15’ after, I think unusual.
2:35 12’ fl9’ Kids with fireworks as if Nov 5th Guy Fawkes Night were coming up. Is being overstrung & heart thumping from doubling the LDN? But I think the heart thumping was on the 30th or 31st too, as my wife said, and I doubled on the 1st.
4:30 15’ Organic cotton doesn’t mean organic dye - my cheap new long underpants claiming to be out of organic cotton are itchy. Researched that. fw4’. Sore throat, heating wasn’t on, but 18°C, 70%.
-6:25 Better after switching underpants. No sore throat, now heating has brought the temperature up to 19°C, but sinuses left 20%, probably also from that. And heartburn increasing, I think cos of the LDN. Weight digital 75.4kg, analog 80-3=77kg. Decreasing.
Sum: 1h25+6h25-(55+12+15=)82’ = 7h50-1h22 =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Phoning with the patient management of the hospital about the unexpected extra bills was a strain, esp. when I still wanted to understand a bit more and she was 'finished' twice, but I was persistent, now understand, and have the hope that at least my semi-state insurance will absorb those costs, so it'll be less than 1000€ and also know what to watch out for next time. Lot of cycling and then too much plant identifying again in the evening, that's the LDN I think, need to counteract it. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - weight decreasing further:

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today?

Organic cotton doesn’t mean organic dye - my cheap new long underpants claiming to be out of organic cotton are itchy, had to take them off again at night. Wash or return?

Quality of life: 90%

Lessons in self-care:
Need to get a grip on myself cos doubling the LDN is making me hyper too much. Or reduce again.
Reasons to be cheerful:
a) Plant/fungi life:
aa) The biggest mushroom is turning colours, I’m taking at least one pic a day, and am curious if the other 3 will get as big.
b) Bird life:
ba) Out cycling for guinea pig grass the jackdaws were gathering over the fields slowly aiming to get back into town to the trees near us.
bb) Loud geese squawking while flying over the garden after dark.
bc) Crazy chattery solo Magpie around again.
c) Animal life:
ca) Now feeding Harley with care stuff is working, but I’d hoped for more.
cb) Thought I was on to a big thing following better web recommendations first - but my wife is change resistant, not a good day today to discuss that, let’s see.
f) Environment:
fa) Wow, what a wind, exciting, but in a positive way.
fb) It provided lots of laughter during table tennis, balls stopping in mid-air, or flying to and fro.
g) Body:
ga) Great how I’m able to move a bit more now, and even cycle longer.
Simplified: I spose leaving tha a)-g) of areas to be cheerful about is a reminder that I couldn’t think of anything in that area. (Often happens when I write the whole entry next morning.)

Foggies: Dropped laptop twice, Thurs eve (stone) and Fri morn together with whole of tray, still working well, luckily. Combination of worrying/agitatedness about Harley and from LDN.

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-03 Friday - recovery?: OK-ish. CVD med side effects? nope (but forgot the morning speck). LDN? (Nov 1st on 2x0.5mg): I was just indecisive about reducing again that I mistakenly took the 2nd dose at 14:30.

What … worked / went wrong … today:
I managed to decrease the jitter in the course of the morning, by concentrating on moving and getting things for me and Harley. So by the time my mate could play TT I was calm, and proprioception working again.

Habit encouragement: time management (✅), self-treatments ✅.

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00 .
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 85-90%-ish (), energy today (, relatively), sleep Thursday night , sleep Friday night .
Mainly working on time management (), energy with LDN , keeping spirits up ().
When I get local pain side effects of LDN I do wonder whether it’s worth it, or whether it is actually injuring something else in my body…

(V)LDN: Nov 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ & heaviness ✅ incl. for walking ✅, fine motor skills (✅), stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌ (which is pretty bad today, even I can see it). Side effects today: jitteriness & heartburn improving, but liquid stools at 9:00, and pain in abdomen again during TT, this time left tho, plus in right jaw but that might be Harley stress ❌. Click for details on dosage and symptoms:

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.
LDN for:

1. Energy up from 10% to 18%: for activities , walking: up from 5’ to 30’ , listening: up from 3’ to 15’ (), TT fine motor skills and available short term energy , stiffness , shorter recovery times , all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache , local: lower back , less , hangover .
3. Muscles: eyes = vision (), bladder: pee frequency & urge ().
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - heating on too high caused a slight headache.
5. Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 (moving 30%, talking 10%, counting 0%) ➔ 80%/2 ✅, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "80%" ✅ and sleep ✅ - 8h04, up 4x (46'), all deep, click for details:

EXHAUSTIBILITY today: “80%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 0h very slow, 2h slow, 7h30 medium, 30' quick

SLEEP (click for details): 8h04, up 4x (46'), all deep. ✅/❌, everything else OK ✅/❌, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:30- 23:42 5’ 1:05 14’ fl10’ 3:07 8’ fl4’ fw1’
4:05 19’ fl15’ -7:20 slightly zombified sinus headache 15% from heating on 2, so 20°C, but no sinus problem like last night.
Sum: 1h30+7h20-(5+14+8+19=)46’ = 8h50-46’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Getting Harley sorted with my wife and now feeding up shorter, but every 2 hours, except nights. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

… I think

Quality of life: 90%

Lessons in self-care:
Reasons to be cheerful:
a) Plant/fungi life: Is that one tree an amelanchier or not? Getting it identified by the tool seemed clear, making me cheerful, but then realized something’s amiss, it should have fruit, but doesn’t.
c) Animal life: Getting Harley sorted.
d) Plant, bird & animal life: Finding a place where I can get 3 herbs plus some last grass for Harley & Stuey.
e) Human life: Video chat with sister was brilliant, despite severe Ache and sick feeling after.
f) Environment: Not outside enough, but when I am, it’s nice.
g) Body: Fun riding my fast bike now, after I’ve realized it isn’t even broken…

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-04 Saturday - recovery?: Stable. CVD med side effects? Forgot them yesterday, drat! LDN? (Nov 1st on 2x0.5mg): Side effects have stopped now.

What … worked / went wrong … today:
Long walk without bike 2x25’ in the cold and rain with double layers was no problem, but looking at art inside a warm building for 20’ made me nauseous / ill feeling, like when video chatting with my sister yesterday. Afterwards ill/pain from obviously having ‘overdone’ it, but I think again the backlash will be OK.

Habit encouragement: time management (✅), self-treatments ✅.

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels () - distracting by identifying plants which is often stressful now, 3rd meal 18:00-19:00
Self-treatments: Horse stance , balancing , .

How was I today?: Feeling 80-90%-ish (), energy today (, relatively), sleep Friday night , sleep Saturday night .
Mainly working on time management (), energy with LDN / keeping spirits up by trying new things for Harley that first seemed to be working, but then not that well .

(V)LDN: Nov 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ & heaviness ✅ incl. for walking ✅, fine motor skills (✅), stiffness ✅, recovery time ✅, Ache (✅), pains (✅), but not my paleness ❌. Pee frequency & sleep improving (✅)(✅). Side effects: a little heartburn (✅). Click for details on dosage and symptoms:

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.
VLDN for:

1. Energy up from 10% to 18%: for activities - yep, walking: up from 5’ to 30’ - yep, listening: up from 3’ to 15’ () - depends, TT fine motor skills and available short term energy - yep, stiffness - definitely, shorter recovery times - yep, all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache () - OK-ish (sick feeling), local: lower back () - worsening, less - , hangover - nope.
3. Muscles: eyes = vision () - OK, bladder: pee frequency & urge () - frequency decreasing.
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - .
5. Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 (moving 30%, talking 20%, counting 0%) ➔ 80%/3 (✅), (gardening)moving ➔ 80%/3 (✅), walking (2x25') ➔ 80%/4-5 ❌, talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅ - 7h13, up 2x (35'), all deep. Makes me wonder if I should stop noting breaks to decrease them by reducing the temptation to do something on my laptop. Click for details:

EXHAUSTIBILITY today: “82%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 2h very slow, 2h slow, 5h30 medium, 30' quick

SLEEP (click for details): 7h13, up 2x (35'), all deep, sore throat a bit and cold sweat type body heat, but everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:30- together heating off.
0:45 5’ sore throat cos heating off. Still together.
3:02 30’ sore throat only a bit, but still put heating on a bit. Body heat strange, cold sweat type, can’t imagine it’s from uneven clothes (long johns with big holes on the right). Dreamt Harley’s weight is down to 1285g (it was 1290g, so not exactly far off, unfortunately). fw12’ fl12’
-6:18 12’ Trying to adjust thermostats. fl8’ OK, plus 15’ doze.
Sum: 1h30+6h18-(5+30=)35’ = 7h48-35’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: None really, getting used to doing Harley often, but it is a bit of a strain to remember and at the moment my day centers on that, which is unhealthy. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Nov 4th: Looking at bloods they're all pretty much identical to April, which means I need to keep up the supps as they are plus try to increase all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - gotta watch my lower back:

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today

except quick bits’n’bobs.

Quality of life: 90%

Lessons in self-care: -

Reasons to be cheerful:
a) Plant/fungi life: Wonderful how the rose campions are producing wonderful final single flowers, whilst garden/golden tickseed is also managing to get a few blossoms out, zinnia and oxeyes are still giving quite a show.
b) Bird life: Robin and BobStar on the balcony. Magpie near again.
c) Animal life: Feeding Harley shorter but more often worked very well.
e) Human life: My table tennis mate was doing caricatures of people in the news in between playing making me laugh doubly, as well as about our antics.
f) Environment: So now it’s dark early I do still sit in the cellar entrance in the dark and wander around the garden taking flash pictures cos this sometimes brings out the single plants better.
g) Body: Brilliant to be able to do such a “long” walk, altho it was overdoing it and I need to find a way to lean on to something whilst feeding Harley.

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-05 Sunday - recovery?: stable. CVD med side effects? None in the daytime, altho I’m back on track, but too much for Monday morning. LDN? (Nov 1st on 2x0.5mg): stable, praps slight improvement to energy, not to Ache.

What … worked / went wrong … today:
Didn’t get out enough. Emotional roller coaster with Harley. LDN, candesartan and finally GABA better. Total screen curfew went brilliantly, from 20:00 on all night, I’ll try to keep that up.

Habit encouragement: time management (✅), self-treatments ✅.

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 80-90%-ish (), energy today (, relatively), sleep Saturday night , sleep Sunday night .
Mainly working on time management (), energy with LDN , keeping spirits up /() - difficult, it’s a roller coaster with Harley.

(V)LDN: Nov 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ & heaviness ✅ incl. for walking ✅, fine motor skills (✅), stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. No more side effects ✅. Click for details on dosage and symptoms:

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.
VLDN for:

1. Energy up from 10% to 18%: for activities - good, walking: up from 5’ to 30’ - good (25’ fast), listening: up from 3’ to 15’ () - managed 35’ service by multi-tasking but did feel a little sick after, TT fine motor skills and available short term energy - OK, stiffness - fine once I get going which is faster too, shorter recovery times - yep, all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache - good, local: lower back () - watch out, less - yep, hangover - nope.
3. Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - better.
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - OK-ish.
5. Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: Nov 6th 6:00 dulled from the candesartan I'm pretty sure. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 0:2 -> 2:2, so getting better rather than worse; very wet (moving 30%, talking 30%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "82%" ✅ (stayed under my possibilities tho except the walk) and sleep ✅ - 8h15, up 8x (32') ➔ getting up: 60%/2 ❌ from candesartan dulling me, made getting up difficult. 8 breaks was 7x GABA, so that'll stop the seizure-ishness caused by 2x GABA yesterday, and not by all the stress. Click for details:

EXHAUSTIBILITY today: “82%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 2h very slow, 2h slow, 5h30 medium, 30' quick

SLEEP (click for details): 8h15, up 8x (32'), all deep, except last half an hour a dulled doze ✅, everything else OK ✅, 80%/2 ✅, ➔ getting up: 60%/2 ❌ from candesartan dulling me, made getting up difficult. 8 breaks was 7x GABA, so that'll stop the seizure-ishness.

Sleep 22:00-6:47, (84)=32’, Sum: 2h+6h47-(84=)32’ = 8h47-32’

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: fear and roller coaster with Harley, it's often down when he doesn't want to eat at all, up again when we see him enjoying life and eating something again. Tongue burning yesterday and even stronger today made me look for food with histamine - it was a raspberry yogurt, I'd always thought they were OK, turns out just as high as strawberry, whilst all the other berries I'm eating are OK (cranberry, goji, aronja - hate the taste tho - and blackberry). Down by Monday morning. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Nov 4th: Looking at bloods of Oct 23rd they're all pretty much identical to April, which means I need to keep up the supps as they are except B5 (see "4)")plus try to increase all 3 CVD meds, cos of the HIGH LIPIDs - altho HDL is still now high enough, triglycerides and LDL are under the limits, but my lipoprotein (a) is still exactly the same, double instead of 4x the max like it was, and that means I need to halve the non-HDL cholesterine. LIVER (homocystein a bit high, so TMG nec.) and THYROID STILL OK: fT4 is now higher - in the upper quarter, fT3 is as it was - in the lowest quarter, TSH middle, TAK low, MAK upper end, factor VIII is now down to the middle of the normal range, IgG4 down but still double the normal max, so "autoimmune indication", whilst thyroid auto-antibodies show no sign of autoimmune in that area. Phosphate and total protein still both under the normal minimum, creatinkinase still above the normal max, leucocytes at the low end, Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - pee frequency decreasing at night - praps from drinking a bit less (than 3L), but not daytime. Got to keep up TMG, B2, B3, and D3 just in case, and can afford to decrease B5 and omega 3, whilst B6, Na, K (higher end), Ca & Fe still OK. B7 and manganese are still very high and I don't know why (is B7 like I just read Masterjohn saying due to increasing other B-vitamins, in my case B2 and B3 as well as B5, whilst Cu, Se & Zn are OK:

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 5th, Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Nov 5th very slightly seizure-ish at TT, then 20:50 a small one (wife reminded me of when Harley had spent a night in a box by mistake without the slightest complaint), due to too little GABA (2x) at night. 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, 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 too much, I need to get back in the garden!

Reasons to be cheerful:
a) Plant/fungi life: Identifying plants further.
b) Bird life: Robin on the balcony, and a BlueTit on the food “swing”, swinging around for 10 minutes, good footage and having learnt to take photos while filming is a brilliant workaround for not being able to stop the camera sound on this dumbphone.
c) Animal life: Harley is so cute.
e) Human life: ea) Table tennis laughter. eb) Talking intensely with wife, or rather me listening, she’s managing to open up a bit.
g) Body: Enjoying so many movements.

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-06 Monday - recovery?: stable. CVD med side effects? dulled waking up cos I took a bit more at night. LDN? (Nov 1st on 2x0.5mg): Will it be worth increasing more? When?

What … worked / went wrong … today:
Sleep without noting breaks went brilliant again.
Harley’s weight slipping…

Habit encouragement: time management (✅), self-treatments ✅.

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 80-90%-ish (), energy today (, relatively), sleep Sunday night , sleep Monday night .
Mainly working on time management (), energy with LDN , keeping spirits up ().

(V)LDN: Nov 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ & heaviness ✅ incl. for walking ✅, fine motor skills (✅), stiffness ✅, recovery time ✅, Ache (✅) - if it comes up in the 3rd TT game and then fully in the 4th is that an improvement?, pains ✅ - they're rarer I feel. But not my paleness ❌. No more side effects ✅. Click for details on dosage and symptoms:

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.
VLDN for:

1. Energy up from 10% to 18%: for activities - yep, walking: up from 5’ to 30’ - yep, listening: up from 3’ to 15’ () - managed an old intense long favourite, TT fine motor skills and available short term energy , stiffness - yep, shorter recovery times - yep, all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache - 3rd/4th TT game and from feeding Harley too, local: lower back - better again from increasing back exercises and hanging a few times, less - yep, hangover - nope.
3. Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - no, but reduced breaks by not writing them down and waking up hard cos dulled by candesartan.
5. Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: Dulled by candesartan Monday morning. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 (moving 30%, talking 10%, counting 0%, laughter "70%") ➔ 80%/3-4-5 (✅), gardening/moving ➔ 80%/3 (✅) - finished cutting and tugging over all branches off a shrub/tree (between gardens) our neighbour wanted to reduce at 12:55 see how long the malaise lasts..., talking 15' ➔ 80%/3 ❌, music 10' ➔ 80%/4 (❌) - bit better cos a song I had on my mind. White lips 80% (❌). Exhaustibility "80%" ✅ and sleep ✅ - 7h57, up 5x (20'), all deep, click for details:

EXHAUSTIBILITY today: “80%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 0h very slow, 4h slow, 5h30 medium, 30' quick

SLEEP (click for details): 7h57, up 5x (20'), all deep. ✅, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:30-6:47 5x4’=20’
nostril/s10% with and without heating.
Sum: 1h30+6h47-(5x4=)20’ = 8h17-20’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅?: Burnt tongue better at night, but still sore on the left as well as as often the tip. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - forgot late evening supps (A3) Sunday, not sure if that explains the suddenly many sleep breaks, from 2 to 7 (quercetin, glutamine, GABA, I'll now take them 30' before Monday's 2nd meal:

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, 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: 80%

Lessons in self-care: Difficult, distracting rather than self-caring properly.

Reasons to be cheerful:
a) Plant/fungi life: Again identified more.
c) Animal life:
ca) Harley popcorning around merrily in the evening, with Stuey.
cb) Found black slug again on my late evening round, lots of photos, a real “beauty” but can’t identify it on the web
f) Environment: Lovely sun today.
g) Body: Fun cutting off a small elderberry, just hurt that it’s good for insects, I wouldn’t have cut if off if it were on our side.

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-07 Tuesday - recovery?: stable. CVD med side effects? took too little. LDN? (Nov 1st on 2x0.5mg): maybe take 3, dunno?

What … worked / went wrong … today:
Again too much indoors, Harley’s state pulling me down.

Habit encouragement: time management ✅, self-treatments ✅.

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00 (19:00)
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 80-90%-ish (), energy today (, relatively), sleep Monday night , sleep Tuesday night .
Mainly working on time management (), energy with LDN , keeping spirits up ().

(V)LDN: Nov 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ & heaviness ✅ incl. for walking ✅ (but nauseous after 20' quick walking), fine motor skills (✅), stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. No more side effects ✅. Click for details on dosage and symptoms:

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.
VLDN for:

1. Energy up from 10% to 18%: for activities - but staying under my possibilities, walking: up from 5’ to 30’ - but feeling nauseous, listening: up from 3’ to 15’ () - no, TT fine motor skills and available short term energy , stiffness - yep, shorter recovery times - yep, all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache - yep, local: lower back - yep, less - yep, hangover - nope.
3. Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - yep.
5. Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 4:0 - better cos wasn't concentrating on playing (moving 20%, talking 10%, counting 0%) ➔ 80%/3 ✅, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 80%/4 ❌. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅ - 8h50, up 5x (20'), all deep, click for details:

EXHAUSTIBILITY today: “82%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 2h very slow, 2h slow, 5h30 medium, 30' quick

SLEEP (click for details): 8h50, up 5x (20'), all deep. ✅, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅ with nauseous sinus headache 20%.

Sleep 21:50-7:00 5x4’ Sum: 2h10+7h-(20)’ = 9h10-20’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Harley. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

Hardly ‘research’ today - here and there

Quality of life: 90%

Lessons in self-care: Still haven’t managed to get outdoors enough. But am trying to de-stress about Harley a bit.

Reasons to be cheerful:
a) Plant/fungi life: Writing about my first year of gardening.
c) Animal life: After me despairing my wife fed Harley up again, with more success. Cheerful little soul once he gets going again.
e) Human life: Table tennis laughter.
f) Environment: Evening sun nice.
g) Body: Ever thankful for the small improvement of stiffness & energy.
Anti-foggy: What was it, there was something really quick-witted I did.

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-08 Wednesday - recovery?: Yeaup, slight improvement. CVD med side effects? Hardly. LDN? (Nov 1st on 2x0.5mg): Still haven’t increased to 3, but planning to - today?? Nope, got to wait.

What … worked / went wrong … today:
Managed earlier last meal.

Habit encouragement: time management ✅ (worked out), self-treatments ✅.

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 85-95%-ish (), energy today (, relatively), sleep Tuesday night , sleep Wednesday night .
Mainly working on time management (), energy with LDN , keeping spirits up - making my peace, but still giving the li’l critter all the love I can, managing to stay calm and loving not distanced even tho wife is crying a lot.

(V)LDN: Nov 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ (from 18% to 20%) & heaviness ✅ incl. for walking ✅, fine motor skills (✅), stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. No more side effects ✅ (unless stools?). Interesting how someone described the lessened pain freeing up energy when using LDN! For me it's the other way round. Or I spose most of the energy is coming from it loosening my stiffness. The difference will be partly explained by the fact that I've found workarounds for my local pains and my overdoing Ache anyway. But the amount of local pains coming up seem reduced and my overdoing Ache I can compare during table tennis: Before it started during the 2nd game, now during the 4th. But again there I'd say that's because my stiffness is down and energy up... Click for details on dosage and symptoms:

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.
VLDN for:

1. Energy up from 10% to 20%: for activities - longer cycling, walking: up from 5’ to 30’ - probably, listening: up from 3’ to 15’ () - need to actively relax and multi-task less, TT fine motor skills and available short term energy , stiffness , shorter recovery times , all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache , local: lower back , less , hangover .
3. Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - .
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - not looking at the time in breaks towards the morning, cos the feeling “only one more hour” has been irritating, rather than comforting like it used to be.
5. Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: 8th: Not enough, more tomorrow. 6th: reached 4mg/d. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects. After that sometimes nauseous sinus headache in the morning if I take a bit too much, but resolves quick, so trying to keep the specks higher in the daytime. I’ve reached the 4mg/d since Nov 6th.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 (moving 30%, talking 10%, laughing 30%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 8' ➔ 80%/4 ❌. White lips 80% (❌). Exhaustibility "80%" ✅ and sleep ✅, - 7h57, up 5x (25'), slight nauseous sinus headache, click for details:

EXHAUSTIBILITY today: “80%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 0h very slow, 3h slow, 6h medium, 1h quick

SLEEP (click for details): 7h57, up 5x (25'), all deep ✅, nostril/s5% dryhands40% -> cream/, nauseous sinus headache 20% upon getting up (✅), everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:35-6:58 Sum: 1h25+6h58-(5x5)’ = 8h22-25’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Sorrow, esp. my wife's, but I'm OK-ish, it is dragging me down a little and making me not really want to get things done except garden. Uro wasn't a strain at all. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Nov 8th: Urologist: swelling is early IPP/Peyronie (like I'd researched), his recommendation is tadalafil and shock wave therapy, which I want to do to prevent anything come up, I'll spread tadalafil like candesartan. Experts' recommendation if there are no symptoms is to do nothing, but it's so big I think that's risky. Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

Treatments for IPP/Peyronie’s disease apart from the tadalafil and shock wave therapy recommended are PABA and traction, which is showing promise (some suggest together with pentoxifylline and colchicine tho, these may be what my uro suggested). Is the swelling really “scar tissue”?

Quality of life: 90%

Lessons in self-care: Getting to the uro by bike was good, but needs good rest now.

Reasons to be cheerful:
a) Plant/fungi life: Finding new blossoms and growth again.
d) Plant, bird & animal life:
e) Human life: TT laughter.

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-09 Thursday - recovery?: not really. CVD med side effects?: Bad. LDN? (Nov 1st on 2x0.5mg): Almost neutralized from the BP med.

What … worked / went wrong … today:
Walk and table tennis OK, but BP med too much.

Habit encouragement: time management (✅), self-treatments ✅.

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00 .
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 80-90%-ish (), energy today (, relatively), sleep Wednesday night , sleep Thursday night .
Mainly working on time management (), energy with LDN (), keeping spirits up .

(V)LDN: Nov 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ & heaviness ✅ incl. for walking ✅, fine motor skills (✅), stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. No more side effects ✅. Click for details on dosage and symptoms:

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.
VLDN for:

1. Energy up from 10% to 18%: for activities , walking: up from 5’ to 30’ , listening: up from 3’ to 15’ (), TT fine motor skills and available short term energy , stiffness , shorter recovery times , all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache - OK-ish, local: lower back - OK, less - nope, cos of BP med, hangover - no.
3. Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - .
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake ().
5. Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: 9th: weakening from the afternoon on, slight headache starting up in the evening, can't think: Wedn 3mg, Thurs 5mg NOT a good idea at all. Multiple local pains from that, due to taking too much of my blood pressure med in too short a time. (The mechanism seems to be that that increases histamine which decreases serotonin.) It was around 5 sort of "new" local pains, but my typical weak spots - or maybe all spots get weak? Hand, knees, ribs on either side... Each of them I pressure-massaged down as soon as they came up, so they don't / couldn't build up. In this case I could pinpoint it was the med/histamine, cos I was feeling increasingly dulled in body and mind and got a slight sinus headache / migraine, all one kind of my various histamine reactions. So in this case like generally I knew that histamine vs. serotonin was the systemic cause, still worked on each pain singly but may now increase GABA for more serotonin and less histamine a bit this evening until it wears off. GABA does generally help me in many areas, so systemically, but far from cure. Systemically I'm now wondering why the blood pressure med via increasing histamine seems to temporarily completely neutralize the positive effect of the L D N that I've been having since starting it, which is 'homeopathically' inciting endorphine production. Something to do with cortisol, histamine, generally neurotransmitters / hormones I spose... 6th: reached 4mg/d. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects. After that sometimes nauseous sinus headache in the morning if I take a bit too much, but resolves quick, so trying to keep the specks higher in the daytime. I’ve reached the 4mg/d since Nov 6th.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 2:1:1 cos wet & ball bust, fun (moving 20%, talking 20%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅) - walk to vet 2x10', talking 15' ➔ 80%/3 ❌, music 10' ➔ 80%/4 ❌. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅ - 8h23, up 5x (37'), click for details:

EXHAUSTIBILITY today: “82%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 0h very slow, 3h slow, 6h medium, 1h quick

SLEEP (click for details): 8h23, up 5x (37'), all deep ✅, but at 23:40 had to go downstairs, I was hardly able to walk / straight (vertigo type), everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:30- 23:40 9’ 0:42 8’ " 1:35 5’ 2:42 5’ 4:35 12’
-7:30 Sum: 1h30+7h30-(8+7+5+5+12=)37’ = 9h-37’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Just the med, rest I think OK. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Nov 8th: Urologist: IPP/Peyronie - but I'm still looking for natural alternatives, and I believe the cystoscopy injured me, whether I have a genetic predisposition or not. Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - got the new 5 local pains from the BP med down again:

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

‘Candy’ (candesartan) increased frequency via histamine.
IPP/Peyronie’s disease (PD) can be triggered by injury, but can it have been that quick after the cystoscopy (which I definitely was injured by)? I’ve found some interesting pages I need to delve into.

Quality of life: 85%

Lessons in self-care:
a) Good to do a little paperwork in the evening, altho talking to my wife on a 2x10’ walk to the vet’s I decided I’d got enough to manage with my new uro diagnosis yesterday, and researching a bit today. But decided just to do a baby step on my insurance stuff, and cleared up a minor problem,
b) also seeing that as a next step I need to clean up my laptop as it’s getting really full, esp. cos of the garden videos.

Reasons to be cheerful:
b) Bird life:
ba) Short but sweet chirpy episode from the great&blueTits and
bb) a chattery, elated one by the jackdaws enjoying the wind.
c) Animal life: Found a red and an orange ladybird sitting under a leaf on the red-yellow chrysanthemum, managed to get a close-up without disturbing them.
d) Plant, bird & animal life: It’s fun seeing the guinea pigs enjoy the leaves (birch, hazel and cherry) even when they’ve turned yellow and brittle - plenty for them to chew on and rip up, Harley definitely needs something more substantial than chewing on the kitchen roll we put under and around him.

e) Human life:
ea) Wife’s found a bit of peace about the decision when to let Harley go by talking to a good friend, now she’s regretting she already thought of it altho he’s still quite happy and not suffering much.
eb) After having done quite a bit early Friday morning (Harley, tidying up), I felt like just lying in my cellar entrance, watching the clouds draw by, seeking indirect or a peek of sun if both cloud layers allow, then a plane arrowed in exactly the same direction, but faster, whilst its exhaust trails are staying behind everything and seeming to move at the same time (like when you’re not sure if it’s your train moving or the one outside the window), so there’s four things of different kinds moving at different speeds. The lower layer of clouds is greyer, the upper whiter.
ec) Now got an almost direct view of the sun at last, much lower than I’d imagined from the tinted clouds around. So hungry for it that I’m taking blinding myself and can hardly see what I’m typing. Altho I’m shielded by clouds, the cherry and the boxwood.
ed) TT 2:1:1 cos wet & ball bust, fun.
f) Environment:
fa) Tho I was dulled in the evening, I could win at cards (like at table tennis I’m often better when I’m dulled, cos I’m less distracted)…
fb) and the major idea occurred to me to use all the rain water I’ve collected and can’t use anymore for the toilet on the staircase that I use when in the garden, cos closer. That’d be “environment” in the ecological sense.
fc) The sun and taking my time to just be outdoors without wondering what I might be able to do is elating. Forgetting everything else,

g) Body: Good when the BP med effect wears off!

Simplified:
a) Rain water for toilet is a sort of simplification, or at least making better use of something, even tho carrying the water in buckets up the 12 steps may be “exercise”.
b) Lying in front of my cellar entrance without distraction I felt the wind sweeping from right to left altho I’m much more sheltered than I would be on the balcony. So I decided to use the square flat plastic thingy (I knew the name in German) I’d been using above me if it rains very hard to the right of me and am now sheltered even more. The problem being outdoors in the cold is more the wind than the cold itself.

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-10 Friday - recovery?: Managed to do quite a bit. CVD med side effects? OK-ish. LDN? (Nov 1st on 2x0.5mg): Good, energy possibly increasing, but stools not quite right.

What … worked / went wrong … today:
Got quite a bit done, esp. for Harley, still to focus on cleaning my laptop data - starting with tabs meant more forum stuff than I’d’ve wanted.

Habit encouragement: time management (✅), self-treatments (✅).

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00
Self-treatments: Horse stance (), balancing ().

How was I today?: Feeling 85-90%-ish (), energy today (, relatively), sleep Thursday night , sleep Friday night .
Mainly working on time management (), energy with LDN , keeping spirits up .

(V)LDN: Nov 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ & heaviness ✅ incl. for walking ✅, fine motor skills (✅), stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. No more side effects ✅, except stools a bit. Click for details on dosage and symptoms:

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.
VLDN for:

1. Energy up from 10% to 20%: for activities , walking: up from 5’ to 30’ , listening: up from 3’ to 15’ (), TT fine motor skills and available short term energy , stiffness , shorter recovery times , all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache , local: lower back , less , hangover .
3. Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake - better.
5. Nothing really since Oct 18th , except 20th: hangover 3h. Slight stools since upping to 3.

CVD med effects?: 6th: reached 4mg/d. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects. After that sometimes nauseous sinus headache in the morning if I take a bit too much, but resolves quick, so trying to keep the specks higher in the daytime. I’ve reached the 4mg/d since Nov 6th.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. no TT mate available, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 80%/4 ❌. White lips 80% ❌. Exhaustibility "80%" ✅ and sleep ✅ - 7h57, up 5x (23'), click for details:

EXHAUSTIBILITY today: “80%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 0h very slow, 3h slow, 6h medium, 1h quick

SLEEP (click for details): 7h57, up 5x (23'), all deep. ✅, everything else OK ✅/❌, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:40-7:00
0:00 5’ 1:20 5’ 2:45 5’ 4:10 4’ 5:40 4’
nostril/s10% at 6-7, nauseous sinus headache 15%
Sum: 1h20+7h-(5+5+5+4+4=)23’ = 8h20-23’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: OK-ish. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Nov 8th: Urologist: IPP/Peyronie - but I'm still looking for natural alternatives, and I believe the cystoscopy injured me, whether I have a genetic predisposition or not. Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

a) phosphorus/phosphate and seizures: Someone pointed out that low phosphorus/phosphate can increase seizures, found it in my notes too, and read that up a bit, but not something i can do much about at the moment, as I can’t seem to increase my phosphate, but good to remember and keep trying.
b) “There is insufficient support for first generation antihistamines (both H1 and H2) as preventive migraine medications and sedation and weight gain are unacceptable side effects. Non-sedating H1 antihistamines need to be appropriately tested.” Review by Worm et al. 2019
**c) Peyronie’s disease research in a separate entry/post, so you can “ignore” it quickly.

Quality of life: 90%

Lessons in self-care: Was on the move for many hours Friday morning, but resting more in the afternoon I didn’t get out quick enough.

Reasons to be cheerful:
a) Plant/fungi life: Still enjoying the few blossoms that are still fully there or even coming up, as well as watching out for the plants I’ve been trying to fully identify, mainly the various willowherb types, which I now fully realize are actually 3 different types in 10 different places.
b) Bird life: Bird clock in the bathroom woke me up at 7, just in time to hear a bit of robin warble when I opened the windows.
c) Animal life: Funny when you eat the same stuff as your animal (Harley): raw veggies, nuts, apples. It means you can share, act as appetizer (when I crunch into an apple), eat together (social) and know what’s difficult to chew (parsnips) and what’s sweet, substantial, but till easier to chew (cashews). Grass, hay and straw is where I draw the line…
d) Plant, bird & animal life:
e) Human life: Comforting wife.
f) Environment: Nice sun, enjoying weather of all kinds.
g) Body: Enjoying stable energy.
Simplified: Using rain water now for the staircase toilet and washing hands after.

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-10/11 Peyronie’s/PD/IPP continued…

First reviews of studies, state of the art mainstream wise, then from k) on alternatives
(male uro problem that can become very painful)

The following is putting me in the picture of my newest diagnosis and showing that all treatment is guesswork/trial & error.

c) Peyronie’s disease treatment overview:
" We have identified 20 distinct conservative treatment strategies. Among the oral therapeutics, only the use of phosphodiesterase type 5 inhibitors is currently recommended for clinical use in patients with concomitant erectile dysfunction. The use of collagenase from Clostridium histolyticum is supported by the best quality evidence in terms of intralesional injections for patients suffering from significant … curvature; however, interferon alpha-2b can also be an option in such patients. Among other non-invasive methods, extracorporeal shockwaves can be useful for pain reduction, and … traction therapy can lead to a reduction in … curvature and plaque size. Despite a wide range of non-surgical methods available for PD treatment, the majority are not supported by sufficient scientific evidence, and the treatment efficacy is underwhelming. Further research on the subject of non-surgical management of PD is highly warranted." Current trends in non-surgical management of Peyronie's disease-A narrative review - PubMed (Kozub et al. 2023) [I love the word “underwhelming”. To me it sounds like traction is more fitting than shockwaves.]

d) Peyronie’s disease: flavonoids as treatment:
The clinical potential of flavonoids in Peyronie's disease - PubMed (Sicignano et al. 2023) Not available, but here the references name “Total flavonoids of Oxytropis falcata Bunge” and “The flavonoid GL-V9”, both Asian, probably Chinese.

e) A Cochrane review of non-surgical treatments: There is little evidence supporting the effectiveness of most non-surgical treatments for Peyronie’s disease. Existing trials are mostly of poor methodological quality and/or fail to address patient-centered outcomes." Non-surgical therapies for Peyronie's disease - PubMed Rosenberg et al. 2023

f) Another review on treatments from 2023! “Seven different oral treatment options including vitamin E supplementation showed evidence for improving outcomes such as … curvature and plaque size. Of the intralesional treatments, Collagenase Clostridium Histolyticum showed evidence for improving … curvature (Range: 16.3-17 degrees, moderate level certainty of evidence). Intralesional Interferon demonstrated some improvement in curvature (Range: 12-13.5 degrees), plaque size (Range: 1.67-2.2 cm2) and pain, whilst intralesional calcium channel blockers such as Verapamil showed variable evidence for changes in the plaque size and pain. Extracorporeal Shockwave Therapy consistently demonstrated evidence for improving … pain in stable disease, and two mechanical traction devices improved curvature. Iontophoresis, topical medications, and combination therapies did not demonstrate any consistent improvements in outcome measures. Intralesional options demonstrate the best potential. Overall, results varied with few high-quality randomised trials present.” A systematic review of non-surgical management in Peyronie's disease - PubMed (Hayat et al. 2023)

g) And another, brilliant for details on the stages and pathophysiology too:
“The acute phase can last up to 18 months… During the stable phase, pain subsides and the plaque become even more organized; eventually, no further progression…occurs. … trauma is the most cited risk factor for PD … Additional risk factors … hypertension…” “These elevations further support a pro-inflammatory state and may contribute to contracture and subsequent … curvature. Collectively, an inflammatory cascade is triggered, which propagates fibrosis and plaque formation over fibrinolysis and plaque degradation. - The three primary histologic patterns of plaques are dense fibrotic plaques, dense fibrotic plaques with focal or patchy metaplastic ossification, or plaques with predominant metaplastic ossification” (I’d say mine are the first.) “In the acute phase, patients commonly – but not always – present with … pain and … curvature.” “Extracorporeal Shockwave Therapy - … the majority of data on the safety and efficacy of LiESWT for urologic indications has been in the form of single-center retrospective and prospective studies that are non-placebo controlled… the use of LiESWT for the treatment of PD can only be described as a safe, non-invasive, and experimental therapeutic option … it is challenging to conclusively state whether LiESWT is an effective treatment for PD. Platelet Rich Plasma is believed to exert regenerative effects at sites of tissue injury by releasing various cytokines and growth factors that promote angiogenesis and connective tissue regrowth. This is believed to be mediated by a supratherapeutic concentration of platelets within the sampled plasma, which release these growth factors and accelerate tissue healing. However, in the case of PD, it is unclear how exactly this mechanism of action would alter plaque size and curvature… trauma from the needling alone provided some therapeutic benefits…” [Augmenting the needling with hyaluronic acid reminded me that I got big problems from that when injected into my spine.] “Combination Antioxidant Therapy - The oral antioxidants used were silymarin, propolis, bilberry, vitamin E, ginkgo biloba” (e.g. with topical diclo). [I’m taking tons of antioxidants incl. silymarin and ginkgo, maybe that’s why it’s not painful?]
Peyronie’s Disease: An Outcomes-Based Guide to Non-Surgical and Novel Treatment Modalities - PMC Reddy et al. 2023 (pubmed for similar studies).

h) Peyronie Disease (here: Treatments)
“Physicians may offer non-steroidal anti-inflammatory agents to help manage pain during this period. Current AUA guidelines recommend offering oral therapy with vitamin E, tamoxifen, procarbazine, omega-3 fatty acids, or a combination of vitamin E with L-carnitine…” “plaque injection complications include … ecchymosis, swelling, pain, corporal rupture, failure of correction of curvature. Surgical complications might consist of infection, urethral injury, … shortening, … pain, hematoma, loss of … sensation, and recurrence of curvature.” Peyronie Disease - StatPearls - NCBI Bookshelf (pubmed) (Sandean & Lotfollahzadeh, 2023)

i) Brief overview, Feyisetan, 2023 (just in case)

j) Poster-pdf

tadalafil/Cialis which my uro prescribed seems a “better” kind of sildenafil/Viagra, a PDE-5-inhibitor, also prescribed for high blood pressure. Better cos it’s got a far longer half-life. Side effects muscle pain, loss of hearing, sometimes with vertigo, headache, GI problems (doc said heartburn), stuffy nose, back ache, dry throat, tiredness. That reads like a list of everything I already tend to have, not exactly encouraging.

k) https://peyronies-disease-help.com/peyronies-disease-exercises-bent-penis/
“The real problem of Peyronies is a tendency to produce an excessive healing response to trauma.” “jelqing can cause more injury”
“The Peyronie’s disease stretching exercises that were developed in a research project of the Peyronie’s Disease Institute in 2006 are greatly different than jelqing because they are extremely gentle. They approach soft tissue stretching from the standpoint of increasing tissue length much in the same way a ballerina attempts to become more flexible by using very light stretches over a prolonged period of time.” [Sounds brilliant, like the way I do other stretches too!]
" These exercises were selected on the basis of their ability to increase blood flow and increase lymphatic drainage to the pelvis in general and penis in particular. None of these massage and exercise techniques are ever applied directly to the penis, since this could possibly result in additional injury and more internal scar development. Instead these massage and exercise techniques are applied to the area immediately around the genitals to loosen tight and contracted soft tissue while avoiding further injury.

This Peyronie’s disease exercises video presents a series of Kegel exercise instructions increase the blood flow and health of the lower pelvis, deep tissue massage to the deep pelvic soft tissues to increase drainage of the lymphatic tissue which in turn will increase blood flow of the involved area, and lastly a series of instructions to increase energy movement in the area of the penis.
Peyronie’s disease treatment exercises
These various Peyronies disease exercises make sense because they attempt to address the potential underlying problems that could prevent the natural healing of the dense internal scar tissue that is at the heart of this problem. Schemes that merely try to enlarge the penis ignore the need to reduce or eliminate the Peyronie’s scar.
When these Peyronies disease exercises are added to an aggressively applied Alternative Medicine treatment program of diverse vitamins, minerals, herbs and enzymes it is sometimes possible to assist the tissue to remove the Peyronie’s scar. The earlier in the disease state this is started, and the more aggressively it is done, the better the therapy results tend to be."

[That doesn’t sound as good, cos I already do all this… Also this 2013 website, started 2004, doesn’t seem to know about shockwave therapy? Next step is to ask in the comments, as these have been answered till at least Feb. 2023.]

Continuing Sunday 12th…

k) continued:
A comment sneaks in the exact items in the “large pack”:
“Am I supposed to take all the the items in the box by following the dosages found on each of the labels? So I will be taking: Unique-E Vitamin, Inflamazyme, Natural C 1000, PABA, MSM + Vitamin C, and Scar Free. Then apply Super CP Serum, followed by Unique-E oil and lastly apply the PDM gel.”

l) Poster (Development of Peyronie’s Disease Following Endoscopy. Reich et al, praps 2023", see URL): “Men with a diagnosis of PD and history of endoscopy are most likely to have undergone a simple, flexible cystoscopy in clinic. There does not appear to be an association between the time to presentation of PD and the endoscopic procedure performed.” [Does that confirm that it can happen pretty much immediately, like I seem to have experienced?]

What’s good about the PDI-site is that they don’t promise much, don’t claim it’s perfect at all. What praps isn’t, is that they say treating it “aggressively” will help better - this could be read as suggesting to buy more supps/packs from the site… Wait a minute, what’s the(ir) cost, anyway? 173$ for starters, then ~80$/m. The video on CD costs 40$

Unique-E Vitamin, mixed tocopherols (42,50$/120)
Inflamazyme (by Nutra Biogenesis): ($56.89/90: Enzymes, various -ases, incl. serrapeptase and nattokinase.
Natural C 1000: several companies.
PABA: p-Aminobenzoesäure – Wikipedia
MSM + Vitamin C:
Scar Free: Various creams
Super CP Serum: skin needling with “Dr. Loren Pickart’s 2nd generation copper peptides blended with salicylic acid and natural antioxidants”
Unique-E oil: tocopherols (oral or topical): same as above, different form
PDM gel: not sure

“This Peyronie’s disease exercises video presents a series of Kegel exercise instructions increase the blood flow and health of the lower pelvis, deep tissue massage to the deep pelvic soft tissues to increase drainage of the lymphatic tissue which in turn will increase blood flow of the involved area, and lastly a series of instructions to increase energy movement in the area of the penis.”
[This reminds me of manual therapy types - my acupressurist did work directly on scar tissue, but older ones, this’ll likely be fresh in my estimate. But all of these are on youtube: a) pelvic floor training, b) deep tissue massage: https://www.youtube.com/shorts/Nq7698UYAvs, https://www.youtube.com/watch?v=CYBNGNqSbdk]
[[Oh drat, my laptop can’t cope with youtube anymore, I guess it’s too full, need to clean it out first!]]

Found a way to reduce the load: just using the preview function. Sound is possible too now, but it usually irritates me. So now as I still feel massaging would be best, I had a look at this one, and before DoctorJo too, to get ideas. https://www.youtube.com/watch?v=gyK-UmNQ4d4

This one recommends stretching not massage as exercise for PD/IPP, but that seems more for curvature: https://www.youtube.com/watch?v=nGlIztmlcEE

Added Nov 15th:

The PDI-DVD/video teaches

• locate your pubococcygeus muscles for lower pelvis isometric exercises
• Nei gung, a unique and invigorating exercise activity
• acupressure massage to increase energy to the lower pelvis.
  plus it says here "Massage and exercise video", meaning:
  – series of Kegel exercise instructions increase the blood flow and health
  – deep tissue massage to increase drainage of the lymphatic tissue
  – instructions to increase energy movement in the area.

As to the costs of the PDI-plans: the 173$ is for the small plan, 234$ for medium, and 436$ for the large one (100$/m after) which seems to contain a slightly different set of supps than the comment above suggested, like quercetin/bromelain (plus an I think irrelevant manual stretching video).
I was going to comment and tell my story on the cause-page of the PDI-site, but I can see if I give him a real @ddress, I’ll be spammed, maybe a temporary one, I’ll see.
2 German pages mentioning traction/stretching are aerztezeitung and a pharmacy-page mentions that and also shockwaves for pain, not whether it reduces the scar. This German uro-page mentions PABA as well as the PDE5-inhibitor that I was prescribed.
2013 article on PD.
2013 review on traction
2015 PD after a urethral swab.

[JayCS]

2023-11-11 Saturday - recovery?: slight progress. CVD med side effects? Nope. LDN? (Nov 1st on 2x0.5mg): 3x with this supp 6-fold-batch?

What … worked / went wrong … today:
Very active, but then nausea from walking after 20-25’.

Habit encouragement: time management (✅), self-treatments ✅.

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels (), 3rd meal 18:00-19:00 - could have earlier, but a hamster wheel (doing up a website problem) distracted me.

Self-treatments: Horse stance , balancing .

How was I today?: Feeling 80-90%-ish (), energy today (, relatively), sleep Friday night , sleep Saturday night .
Mainly working on time management (), energy with LDN , keeping spirits up .

(V)LDN: Nov 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ (22!) & heaviness ✅ incl. for walking (✅) - 20' was still the limit for walking, fine motor skills (✅), stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. No more side effects ✅ - stool problem decreasing. Click for details on dosage and symptoms:

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.
VLDN for:

1. Energy up from 10% to 22%: for activities - getting stuff for Harley in the morning, and garden in the afternoon, walking: up from 5’ to 30’ - yeah, but with nausea towards the end, listening: up from 3’ to 15’ () - hmm, not really, TT not available, stiffness , shorter recovery times , all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache , local: lower back , less , hangover .
3. Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - .
5. Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: 6th: reached 4mg/d. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects. After that sometimes nauseous sinus headache in the morning if I take a bit too much, but resolves quick, so trying to keep the specks higher in the daytime. I’ve reached the 4mg/d since Nov 6th.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. no TT, gardening/moving for hours ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 80%/4 ❌. White lips 80% (❌). Exhaustibility "78%" ✅ and sleep ✅ - 6h36, up 3x (54') + 10' doze, all deep, click for details:

EXHAUSTIBILITY today: “78%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "4h rest", 0h very slow, 3h slow, 8h medium, 1h quick

SLEEP (click for details): 6h36, up 3x (54') + 10' doze, all deep - tuck in tops after loo to stop sore throat! 6:30 "excited" after seeing at 6:15 that it's after 6 and it's time to get up soon, which will have been too short, let's see how energy goes. ✅, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:45- 0:10 6 40’ 2:30 10’ 4:50 4’ 6:15 4’ (+10’ doze)
Sum: 1h15+6h15-(40+10+4=)54’ = 7h30-54’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) (✅): "excited" after seeing at 6:15 that it's after 6 and it's time to get up soon - but why? Quite OK otherwise. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Nov 8th: Urologist: IPP/Peyronie - but I'm still looking for natural alternatives, and I believe the cystoscopy injured me, whether I have a genetic predisposition or not. Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

Peyronie’s continued: see previous blog entry: Alternative “PDI”-site disappointing, money making: a few supps I already take, plus Kegel type exercises I already do… - but’ll do them more intensely now, won’t harm.

Quality of life: 90%

Lessons in self-care:
a) Tuck in tops after loo at night to stop sore throat!
b) “excited” after seeing at 6:15 that it’s after 6 and it’s time to get up soon, so I spose I need to avoid looking at the time again. But why does that recently get me going at all?

Reasons to be cheerful:
a) Plant/fungi life: Loads of mushroom areas everywhere outside with hundreds in areas the size of a big plate. Fun chopping up shrub branches with a clipper and small saw and having lots of branches and twigs for placing all around the outside of the garden.
b) Bird life: Robin song early, one advantage of not sleeping enough.
c) Animal life: Harley’s weight stable again, let’s see how long.
e) Human life: Wife happy.
f) Environment: So good to be outside more.
g) Body: So good to be able to move so much more without backlash.

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-12 Sunday - recovery?: lots in the garden, like yesterday. CVD med side effects? nope. LDN? (Nov 1st on 2x0.5mg): if this is 3x I’m not sure when I’m taking the 3rd, apparently with a meal not between them? OK, I’ve checked the prepared supps, I’m taking 2x with the first meal, that means that the energy in the morning is apparently being increased by that, and looking it up it’d seem since Friday 10th…

What … worked / went wrong … today:
Cutting up the neighbours’ pruned stuff was great fun, strain but no backlash.

Habit encouragement: time management (✅), self-treatments ✅.

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00 .
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 85-95%-ish (), energy today (, relatively), sleep Saturday night , sleep Sunday night .
Mainly working on time management (), energy with LDN /, keeping spirits up /().

(V)LDN: Nov 10th (2+1)x0.5, 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ & heaviness ✅ incl. for walking ✅, fine motor skills (✅), stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. No more side effects ✅. Click for details on dosage and symptoms:

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.
VLDN for:

1. Energy up from 10% to 22%: for activities , walking: up from 5’ to 30’ - hardly nausea after 30’, listening: NOT up from 3’ to 15’ () - couldn’t listen to our service at all, TT fine motor skills and available short term energy , stiffness , shorter recovery times , all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache , local: lower back , less , hangover .
3. Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - but a bit too awake if I know it’s after 6 .
5. Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: 12th: after 5mg a few days ago wasn't good, today 5mg spread better was OK. 6th: reached 4mg/d. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects. After that sometimes nauseous sinus headache in the morning if I take a bit too much, but resolves quick, so trying to keep the specks higher in the daytime. I’ve reached the 4mg/d since Nov 6th.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. no TT available, gardening/moving lots ➔ 90%/2 ✅, talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "78%" ✅ and sleep ✅ - 8h57, up 5-6x (30'), click for details:

EXHAUSTIBILITY today: “78%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 0h very slow, 3h slow, 6h medium, 1h quick

SLEEP (click for details): 8h57, up 5-6x (30'), all deep (just thought I'd doze another 30', but that went to 1h30, so caught up on last night! ✅, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:20-7:47 10’+5*4=30’
?60-70%/?2-3/?5% p0 st2 fw2’ fl0’ deep/ air? -A8 drymouth30% sore throat10% tongue20% itch 0% nostril/s0-10% dryhands0% nausea0% stomach0-10% sinuses0% headache0% stools0 loose% zombie0%. plugs0 cream0 gel0 wet0 heat teeth0
Sum: 1h40+7h47-(30)’ = 9h27-30’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: When getting up early Sunday morning, like I said on yesterday's blog, and the past few days actually, my heart thumps and my thoughts are revved up, luckily no longer at night if I keep screen time down. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Nov 8th: Urologist: IPP/Peyronie - but I'm still looking for natural alternatives, and I believe the cystoscopy injured me, whether I have a genetic predisposition or not. Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

More on PD/IPP see above.

Quality of life: 90%

Lessons in self-care:
a) Interesting today to watch how I fare with 6h30 sleep instead of 8h30, cos I’ve been wondering how come >8h is now OK, whereas it wasn’t the past few weeks - maybe LDN, of course that’s changing my biochemistry all the time. Monday morning: I fared well right, and caught up.
b) Wondering why my feet were colder at night I thought I have to change one of my thick pair of socks to a thicker one. Then changing clothes in the morning realized I had one thin pair too few on, only 4 instead of 5 pairs… The thinner pair are stocking which are good for calf warmth along with the long johns as well as bit of varicose veins which cardio said stockings would be good for.
c) Nausea attack on empty stomach in the morning, praps from taking a speck of candesartan without eating.
Reasons to be cheerful:
a) Plant/fungi life: Neighbours’ clippings were wonderful to cut up and use the redder leaves for decoration, the bendy twigs praps for wicker-work and the thicker ones for cladding all naked walls with dead wood. Two big heaps and now hardly anything left of it, still so much to clad!
b) Bird life:
ba) Blackbird was singing softly a lot of the time (hours),
bb) Robin came right up to me and showed me by jumping into my dead wood piles that he thought it was brilliant what I was doing for them.
bc) First cranes coming over the garden today on their way south, about 80 is a good start, it’ll get to be 1000s soon.
c) Animal life: Cute with Harley.
d) Plant, bird & animal life: Birch leaves are Harley’s favourite, maybe both, and hazel leaves too, and they eat them dry, so I’m collecting them off the trees before they fall down and get dirty and mix up.
e) Human life: Good times with wife, playing skip-bo as ever and talking, quite good mood, considering she had bad experiences the past days.
f) Environment: Again so good to be outdoors so much.
g) Body: Great to be able to do even more in the garden.
Simplified:
a) So now I bring up several buckets of rain water to the staircase toilet that also means I can use the water to wash my fingertips (cos hands dry out too quick and cos there’s no sink, so had to go somewhere else to wash them), and now I’ve put a small towel in there too, perfect!
b) Didn’t want to disturb Wife to get my muesli stuff despite being up early, but remembered I’ve got stuff in the cellar too - easy.
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-13 Monday - recovery?: Stable. CVD med side effects? Stably none, so can start with low dosed statin. LDN? (Nov 10th on (2+1)x0.5mg): Stable at 22% energy.

What … worked / went wrong … today:
Weight 76.1kg, yesterday 77.4kg, so hasn’t decreased further, just meandering lower level.

Habit encouragement: time management (✅), self-treatments ✅.

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00 .
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 85-95%-ish (), energy today (, relatively), sleep Sunday night , sleep Monday night .
Mainly working on time management (), energy with LDN , keeping spirits up .

(V)LDN: Nov 10th (2+1)x0.5, 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ (22%) & heaviness ✅ incl. for walking ✅, fine motor skills ✅, stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. No more side effects ✅. Click for details on dosage and symptoms:

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.
VLDN for:

1. Energy up from 10% to 22%: for activities , walking: up from 5’ to 30’ , listening: up from 3’ to 15’ (), TT fine motor skills and available short term energy , stiffness , shorter recovery times , all constantly . But : still yellow/white face, black eye rims and white lips.
2. Pain: overall Ache , local: lower back , less , hangover .
3. Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake ().
5. Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: 6th: reached 4mg/d. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects. After that sometimes nauseous sinus headache in the morning if I take a bit too much, but resolves quick, so trying to keep the specks higher in the daytime. I’ve reached the 4mg/d since Nov 6th.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 (moving 20%, talking 20%, counting 0%) ➔ 80%/2-3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "78%" ✅ and sleep ✅ - 8h35, up 5x (25'), all deep, click for details:

EXHAUSTIBILITY today: “78%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 0h very slow, 3h slow, 6h medium, 1h quick

SLEEP (click for details): 8h35, up 5x (25'), all deep. ✅, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:30-7:30 5x5=25’ Sum: 1h30+7h30-(25)’ = 9h-25’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: None I can remember. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Nov 8th: Urologist: IPP/Peyronie - but I'm still looking for natural alternatives, and I believe the cystoscopy injured me, whether I have a genetic predisposition or not. Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - need to watch, prevent and treat back, focal seizure at 20:30, altho GABA normal, so is this new frequency from LDN or candesartan or nattokinase? No, not according to research, but yet don't know what else it's from:

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 13th (1), 5th (1) (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Nov 13th 20:30 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

a) Last Friday Cort Johnson blogged “How to Decide Which Treatments To Try for ME/CFS and Fibromyalgia: The Ric Arseneau Talk” on healthrising - an essential question.
It summarizes a 1h28 talk on youtube called “Medication and Treatment Decisions – Navigating Online (mis)Information & Evaluating the Evidence”
Summarizing Cort Johnson’s summary:
What it starts on is easy: Stuff that’s cheap and has good evidence to help.
But then it gets really specific and qualified about certain newer treatments, YES first (#1-#3), then Perhaps (4-7), then NO (8-10):

• L D N - YES, cheap, lots of trials going on for FM, ME/CFS and Long-Covid (plus a new study has shown that naltrexone is stable in liquid which means it’s OK after all to titrate it after dissolving it, if you can get naltrexone prescribed).
• aripiprazole/Abilify for ME/CFS -YES: fog & fatigue & PEM, cheap, little risk.
• Amygdala Retraining Program – (Gupta) YES, neuromodulation, low cost.
• Metformin - a new one for us, YES if you get CoV, but unsure if more.
• Guanfacine (typically for ADHD) - YES for fog & tension if you can afford it.
• Micronized PEA (palmitoylethanomide) – YES, but not cheap.
• Repetitive transcranial magnetic stimulation (rTMS) – Perhaps.
• Oxaloacetate – NO, safe and possibly effective, but very expensive.
• CT38 - not yet.
• Rituximab for ME/CFS has very probably failed - NO.

There’s also a (dropbox) link to details and his assessment if 40 substances incl. the above, but also amitriptyline, cymbalta, gabapentin, Lyrica…

Ric Arseneau is an ME/CFS/FM/Long-CoV/ chronic disease expert, was a complex chronic disease clinic director and much more.

b) Consumlab’s list of fibro supps:
consumerlab has a short list of supps with evidence to work. I don’t think it’s a good list, cos they always only cite one or very few, usually bad, studies - there are better studies around. But at least it’s an unsuspicious source, and there’s nothing I didn’t/wouldn’t try:

• vitamin D - if it’s low,
• 5-HTP - possibly,
• creatine - slightly for muscle strength,
• CoQ10 - fibro generally,
• ALC - depressive symptoms (not anxiety or pain),
• SAMe - pain at rest and fatigue slightly,
• reishi mushroom powder - physical fitness,
• melatonin - pain & fitness at higher doses, but often stronger side effects,
• pycnogenol (= OPC = pine bark) - pain, stiffness,
• magnesium chloride spray - cramps, fatigue,
• capsaicin - pain
• Cellfood [?! - see below]

no evidence to help fibro:

• iron (only for low iron)
• ginseng
• ALA
• “Prelief” “even” worsens for some [well, can’t anything worsen for some?]

Bad ones for me were 5-HTP and melatonin and would have been capsaicin, Cellfood sounds incredible silly, I would never have listed that.

c) As I’m getting a bit more focal seizures I was wondering if nattokinase, naltrexone or candesartan can have to do with them. It seems not: no evidence for nattokinase nor candesartan, whilst naltrexone decreases seizures:
The opioid antagonist naltrexone decreases seizure-like activity in genetic and chemically induced epilepsy models.

Quality of life: 90%

Lessons in self-care: Still got to watch for my back.

Reasons to be cheerful:
a) Plant/fungi life: All the leaves in the garden are colourful fun, so good to rake into small piles and then piling them up next to the composter.
b) Bird life: Blackbird song and on the balcony. Others scarce.
c) Animal life: Stable day with Harley, some feeding meals he eats hardly nothing, but still keeps his weight, so he’s eating himself too.
e) Human life: Forum “work” was rewarding.
f) Environment: Always good outdoors, whatever the weather.
g) Body: Still managing quite a lot.
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-14 Tuesday - recovery?: Stable. CVD med side effects? Small problems after ~1mg of atorvastatin, then OK. LDN? (Nov 10th on (2+1)x0.5mg):

What … worked / went wrong … today:

Habit encouragement: time management (✅), self-treatments ✅.

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00 .
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 85-90%-ish (), energy today (, relatively), sleep Monday night , sleep Tuesday night .
Mainly working on time management (), energy with LDN , keeping spirits up .

(V)LDN: Nov 10th (2+1)x0.5, 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ (22%) & heaviness ✅ incl. for walking 20' ✅, fine motor skills ✅, stiffness ✅ (10%), recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. No more side effects ✅. Click for details on dosage and symptoms:

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.
VLDN for:
=1) Energy up from 10% to 22%: for activities , walking: up from 5’ to 30’ , listening: up from 3’ to 15’ () - not really, TT fine motor skills and available short term energy , stiffness , shorter recovery times , all constantly . But : still yellow/white face, black eye rims and white lips.
2) Pain: overall Ache , local: lower back , less , hangover .
3) Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
4) Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake ().
5) Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: Nov 13th started atorvastatin 1mg/d. 6th: reached 4mg/d. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects. After that sometimes nauseous sinus headache in the morning if I take a bit too much, but resolves quick, so trying to keep the specks higher in the daytime. I’ve reached the 4mg/d since Nov 6th.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 4:1 (5 games!) (moving 20%, talking 10%, counting 5%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/2 ✅, talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "78%" ✅ and sleep ✅ 7h33, up 4x (59'), all deep, + 10' doze, click for details:

EXHAUSTIBILITY today: “78%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 0h very slow, 3h slow, 6h medium, 1h quick

SLEEP (click for details): 7h33, up 4x (59'), all deep, + 10' doze ✅, everything else OK ✅, 85%/1 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:50- 0:10 45’ 6 3:00 4’ 5:00 6’ 7:22 4’ +10’ doze.
Sum: 1h10+7h22-(45+4+6+4=)59’ = 8h32-59’ = 7h33, up 4x (59’), all deep, + 10’ doze

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Can't remember any. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Adding this again: Aug 7th: Very painful uro bladder exam and bloods was followed on 9th by a vertigo attack - connected? Nov 8th: Urologist: IPP/Peyronie - but I'm still looking for natural alternatives, and I believe the cystoscopy injured me, whether I have a genetic predisposition or not. Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 13th (1), 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Nov 13th 20:30 slight cos of wind noise. 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

This Epilepsy Rates in Hypertension Lowered Among Those on Angiotensin Receptor Blocker Therapy seems to suggest that candesartan will be decreasing seizures rather than increasing them.

Quality of life: 90%

Lessons in self-care: Pretty unstable in the morning when collecting grass for the piggies, had to hold arms out once, then bowled half over where it was wetter, which hurt more than falling over during table tennis a few days ago, left side and knee, but treated it several times after.

Reasons to be cheerful:
a) Plant/fungi life:
aa) Make sure I have a look at all flowers still a-bloom almost every day.
ab) Tons of leaves to rake.
ac) Got red vine leaf stems from neighbour as further decoration. They seem to outlive the red colour of the leaves that I’d got and spread.
b) Bird life:
ba) Blackbird again. Came right up, tut-tutting nervously, then suddenly hiccuped, frightened himself and buzzed off.
bb) Something whooshed thru a bush, can’t have just been a leaf, short while later a jay sparked over to neighbour’s garden.
c) Animal life: Harley fairly cheerful, but also frantic, maybe hunger?
e) Human life: Wife OK after work and after doc appt. with 2h waiting time. Table tennis laughs as ever.
f) Environment: Joy as ever.
g) Body: Enjoying the new freedom as ever.
Foggies:
a) My laptop fell down a 3rd time, again one yard on to the cellar steps. Still working, but the mouse pad isn’t clickable any more. No matter, I always wanted to ever stop using the clicking, now I’ll have to! (Of course any function less stops possibilities that I may sometimes need or if the other one stops working… - but maybe it’ll work again?)
b) Left my bedroom windows open all day, now in the evening it’s only 12°C - but lovely and fresh air!

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-15 Wednesday - recovery?: Stable increase. CVD med side effects? No, despite praps increasing. LDN? (Nov 10th on (2+1)x0.5mg): Same.

What … worked / went wrong … today:
OK-ish.

Habit encouragement: time management (✅), self-treatments ✅ - if I didn't see it when I fill in this entry, I'd often forget...

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00 .
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 85-90%-ish (), energy today (, relatively), sleep Tuesday night , sleep Wednesday night .
Mainly working on time management (), energy with LDN , keeping spirits up .

(V)LDN: Nov 16th: Whoops, I'll be running out Monday, as I only got 60 capsules, I need to order more and will have to reduce to 2x0.5 from tomorrow on to get to Monday, so it'll be interesting to see if my energy stays at 22%... Nov 10th (2+1)x0.5, 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ (22%) & heaviness ✅ incl. for walking 20' ✅, fine motor skills ✅, stiffness ✅ (10%), recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. No more side effects ✅. Click for details on dosage and symptoms:

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.
VLDN for:
=1) Energy up from 10% to 22%: for activities , walking: up from 5’ to 30’ , listening: up from 3’ to 15’ () - tried 3 songs but it wasn’t enjoyable, TT fine motor skills and available short term energy , stiffness , shorter recovery times , all constantly . But : still yellow/white face, black eye rims and white lips.
2) Pain: overall Ache - but tough after adding 4 short table tennis games with a kid after the 4 with my mate, local: lower back , less , hangover .
3) Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
4) Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - .
5) Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: Nov 15th: Strange tension from 12:30 on, not sure if it's Harley or atorvastatin. Nov 13th started atorvastatin 1mg/d. 6th: reached 4mg/d. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects. After that sometimes nauseous sinus headache in the morning if I take a bit too much, but resolves quick, so trying to keep the specks higher in the daytime. I’ve reached the 4mg/d since Nov 6th.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 with mate ➔ 80%/3 (✅), then another 4 short games with a kid (moving 20%, talking 30%, counting 0%) ➔ 80%/5 (❌) - too much, but not long backlash, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 15' ➔ 70%/4-5 ❌. White lips 80% (❌). Exhaustibility "78%" ✅ and sleep ✅ - 8h34, up 7x (28'), all deep (last hour deep doze), click for details:

EXHAUSTIBILITY today: “78%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 0h very slow, 3h slow, 6h medium, 1h quick

SLEEP (click for details): 8h34, up 7x (28'), all deep (last hour very deep doze) ✅, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 21:55-6:57 7x4’ Sum: 2h05+6h57-(28)’ = 9h02-28’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Harley caused a lot of worry all morning, cos he didn't want to eat at all. OK because he was keeping up his weight by himself. And solved when my wife came home, cos she reminded me of my own trick to inject a little healthy mush which seems to stimulate his bowels and appetite. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg. Whoops, this has to be added to!

3) DOCS: Nov 8th: Urologist: IPP/Peyronie - but I'm still looking for natural alternatives, and I believe the cystoscopy injured me, whether I have a genetic predisposition or not. Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Aug 7th: Very painful uro bladder exam and bloods was followed on 9th by a vertigo attack - connected? Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 13th (1), 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Nov 13th 20:30 slight cos of wind noise. 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today

LDN may reduce inflammation:

a) Arseneau’s cheat sheet on naltrexone mentions LDN reducing inflammation, and sure enough this study from 2017 is one that found that, however it’s again by Younger, whose studies were all small and preliminary…: Reduced Pro-Inflammatory Cytokines after Eight Weeks of Low-Dose Naltrexone for Fibromyalgia - PubMed
b) If it reduces Stiff Person’s Syndrome like in this study, then that might be because it reduces inflammation it says in this 2020 case report: Low-Dose Naltrexone reduces symptoms in Stiff-Person Syndrome - PubMed - but it fits in the way it has reduced my stiffness from “70%” to 10%.

c) Peyronie’s disease again, exercises, see above:

d) All my CVD meds are crushable, it seems, altho mayoclinic says no, sps.nhs.uk says yes, so nothing wrong with crushing them and taking specks.

Quality of life: 90%

Lessons in self-care: Need to watch tension and back more. Tension about how to feed Harley best as well as getting paperwork done, and first wanting to clean up my laptop, which is difficult, cos if I want to migrate everything to the next gadget, that’ll be easier if I keep most things on it. It’s the garden pics and esp. videos which take up a lot of room and as that’s my main focus.

Reasons to be cheerful:
a) Plant/fungi life: Continuing writing my “first year garden” description.
b) Bird life: Blackbird and jay around.
c) Animal life: Squirrels around. Harley eating by himself too.
e) Human life: Wife had a meeting with old friends, that helps.
f) Environment: Weather clearing up.
g) Body: Stable is good.

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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]

2023-11-16 Thursday - recovery?: Stable. CVD med side effects? OK-ish. LDN? (Nov 10th on (2+1)x0.5mg): OK, but reduced cos running out, realizing that (2+1)x may have not been as good as 3x, so trying 2x1x0.5mg now, ordered it.

What … worked / went wrong … today:
Crazily long sleep after feeling tired pretty early.

Habit encouragement: time management (✅), self-treatments ✅.

Time (= stress) management: Blog earlier , forums less , jump off hamster wheels , 3rd meal 18:00-19:00 .
Self-treatments: Horse stance , balancing .

How was I today?: Feeling 85-90%-ish (), energy today (, relatively), sleep Wednesday night , sleep Thursday night (but too deep and long?).
Mainly working on time management (), energy with LDN , keeping spirits up .

(V)LDN: Nov 17th 2x0.5. Nov 10th (2+1)x0.5, 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ (22%) & heaviness ✅ incl. for walking 20' ✅, fine motor skills ✅, stiffness ✅ (10%), recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌ or listening ❌. No more side effects ✅. Click for details on dosage and symptoms:

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. 17th 2x0.5.
VLDN for:
=1) Energy up from 10% to 22%: for activities , walking: up from 5’ to 30’ , listening: difficult (), TT fine motor skills and available short term energy , stiffness , shorter recovery times , all constantly . But : still yellow/white face, black eye rims and white lips.
2) Pain: overall Ache , local: lower back , less , hangover .
3) Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
4) Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake () - .
5) Nothing really since Oct 18th , except 20th: hangover 3h.

CVD med effects?: Nov 13th started atorvastatin 1mg/d. 6th: reached 4mg/d. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.

24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects. After that sometimes nauseous sinus headache in the morning if I take a bit too much, but resolves quick, so trying to keep the specks higher in the daytime. I’ve reached the 4mg/d since Nov 6th.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 (moving 30%, talking 30%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 (❌), music 15' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "78%" ✅ and sleep ✅ - 9h02!, up 5x (20'), all deep. Why??, click for details:

EXHAUSTIBILITY today: “78%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 0h very slow, 3h slow, 6h medium, 1h quick

SLEEP (click for details): 9h02!, up 5x (20'), all deep. Why?? ✅, everything else OK ✅, 80%/2-3 (✅), ➔ getting up: 80%/2-3 (✅).

Sleep 22:40-8:02 -5*4=20 Sum: 1h20+8h02-(20)’ = 9h22-20’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Getting the onco report I spose a bit, but not that much. Click for list, incl. Sept summary added Oct 2nd...."

(1) JAB#3 (on 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!
(2) Jan: TCM recommendations for a few weeks
(3) 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).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) 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%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.

3) DOCS: Nov 16th: Report from onco doc came, claiming it was me that'd stopped coming, and that my lymph nodes, liver and spleen sizes would need to be checked next, but no cancer is detectable to date, put the eosinophilia (at the time) down to fibromyalgia or (MCAS) intolerances. 8th: Urologist: IPP/Peyronie - but I'm still looking for natural alternatives, and I believe the cystoscopy injured me, whether I have a genetic predisposition or not. Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Aug 7th: Very painful uro bladder exam and bloods was followed on 9th by a vertigo attack - connected? Click for details.

Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)):

1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 13th (1), 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Nov 13th 20:30 slight cos of wind noise. 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/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.

Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

‘Research’ today
Looked up the 2 long words in the onco report: Enlarged lymph nodes, and enlarged liver and spleen, it seems cos of my increased LDH.

Quality of life: 90%

Lessons in self-care:
Still gotta watch Harley stress, but better now.

Reasons to be cheerful:
b) Bird life:
ba) 1000 cranes! - One flock (sedge) really low, but phone wasn’t quick enough.
bb) Lots of soft blackbird song, blackbird (another male?) sitting on pavilion near me.
c) Animal life:
ca) Finding a better routine with Harley.
cb) Sweet him getting out of his feeding box on my sofa for some flakes next to the box himself while I was blogging and didn’t catch that he wanted something else.
cc) Sweet also him licking my fingers when we were finished
cd) After 55’! he’d peed in the nappy under him in the box, usually he’s pretty potty trained and doesn’t pee in it even after 50’! Both of them when they have been snuggling on my wife start nipping her in the face if they need to go potty in the cage (used to bite a bit, but now they just nip).
e) Human life:
ea) Table tennis laughs as always.
eb) My “best friend” answered my last mail, that was nice.

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after 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”