JayCS’s Fibro Blog

2023-10-09 Monday - recovery?: Bit better after a while. RR/supp changes?: Feels OK, but not checking. VLDN?: This week 0.125g in the mornings, cos I’m not sure about sleep.

What … worked / went wrong … today:
Slept a bit long Sunday night, the morning seemed a bit of a struggle but came out fine once I was playing TT. The problem may be the energy is there, but I feel sick and Achey if I use all of it.
Screen curfew at 19:00 and changing VLDN to the mornings: decreased sleep breaks to 4, <30’ :white_check_mark:. Let’s see which, or both, or neither…

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels (:white_check_mark:).
Self-treatments: Jaw :white_check_mark:, wall sits - well actually a horse stance :white_check_mark:, balancing :white_check_mark:, supps by 15:00: :white_check_mark: - in bulk, back by 16:00: :white_check_mark:, capsules by 17:00 (:white_check_mark: - not that necessary today, GABA half-capsules next).
*As a joke I balanced the table tennis bats an ball on the metal net of our outdoor table (cos the table was wet from rain) and said to my mate: “They told me in the hospital to do balancing exercises”! (I wasn’t sure if he’d think it funny, but he did.)

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

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR :white_check_mark:, energy, esp. via VLDN :white_check_mark:.

VLDN

Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00, 8th 14:20 0.125mg, 9th 10:00 0.125mg.
VLDN :+1: for:

  1. Energy up from 10% to 18%: for activities :white_check_mark: - better now I’m more careful, walking: up from 5’ to 30’ :white_check_mark: - actually longer, but after that time of keeping up with my wife I had to drop back, slow down and take breaks, listening: up from 3’ to 15’ :white_check_mark:, stiffness :white_check_mark: - always up stairs quick still, shorter recovery times :white_check_mark: - now I’m not overdoing it, all constantly :white_check_mark:. But :neutral_face:: still yellow/white face and black eye rims.
  2. Pain: overall Ache (:white_check_mark:) - less again now I’m toning down, local: lower back :white_check_mark: - still no problems, less :white_check_mark: - hardly new problems, hangover :white_check_mark: - less when toning down. The Ache has definitely not improved as much as the rest.
  3. Muscles: eyes = vision (:white_check_mark:) - off and on, bladder: pee frequency & urge (:white_check_mark:) - not pee, but evening screen time or evening VLDN may be the main cause for increased sleep breaks…:
  4. Sleep: feel better in breaks, waking up better, more awake :white_check_mark: - after screen curfew at 19:00 and VLDN in the mornings sleep breaks decreased to 4, <30’.
    VLDN :-1: Nothing any more, only as ever needing to “curb my enthusiasm”. An hour or two after taking the first 0.125 dose I got a strong pain in the back of my left thigh, when starting a walk, but it got better after 20’ and didn’t repeat. Never had it before that I can remember.

How to continue: As planned Sunday: Increase dose, but avoid strain by only using half the energy I feel. Taking it in the mornings now to see if sleep breaks decrease.

RR: HIGH BP PERIODS after rest have seldom been proven longer than 5 or 10 mins (re-checked), around 4h/wk. Night dip usually 30%, sometimes phases of 10%, now focusing on implementing research for more reliable measurement and assessment, then trying to actively decrease.
1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 3:1 and 2:0 (moving 30%, talking 20%, counting 0%) ➔ 80%/3 (✅), not much gardening/moving, except shop, but cycling to shop and table tennis was OK (fast) ➔ 80%/2-3 (✅), talking 15' ➔ 80%/4 ❌, music 5' ➔ 60%/4 ❌. White lips80% (❌). Exhaustibility "82%" ✅ and sleep ✅, 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 "8h rest"), 2h very slow, 4h slow, 1h30 medium, 30' quick
SLEEP (click for details): 8h15, up 4x (24'), all deep ✅, better after pulling screen curfew forward to 19:00 and switching VLDN to the mornings, tongue burning higher in the evening before cos of 100g baked beans, everything else OK, incl. belly (LDN) ✅, 80%/2 (✅), ➔ getting up: 70%/2 (❌) - not restored, not awake, as usual at the moment.

Sleep 22:35-
23:59 4’
1:05 4’ heartburn?
2:35 12’ hp
5:07 4’
-7:14 .
Sum: 1h25+7h14-(4+4+12+4)24’ = 8h39-24’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Doing another music arrangement first thing was actually too much of a strain, altho it seemed fun - but difficult. Talking with a very talkative and also with my other table tennis mate after the evening games was the other big strain. 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.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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 starting LDN…

3) DOCS: Phoned cardio to bring my appt time forwward, more tomorrow. Last update Oct 9th: Need to phone all these! Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. 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% :white_check_mark:, appetite :white_check_mark:, pee pain: 0p1-2 :white_check_mark:, lower back unrest :white_check_mark:. Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND :white_check_mark:, dry mouth (day and) at night at least not hurting/sticky (:x:).

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. 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. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings. Increased ginkgo to 3 again pretty soon. Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. 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. 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

Quality of life: 85%

Lessons in self-care:
a) Toning it down paid off from this afternoon on.
b) Pulling screen curfew forward seems to be working.
Reasons to be cheerful:
a) The “balancing exercise” before table tennis of course wasn’t the only reason to be cheerful, I don’t mention it, but the laughter is another really good thing about table tennis.
b) Found a slug and then a snail in the bird food box, both as pretty as they come. I chucked the slug down as it was on the way to the food, but left the snail. Later looked out for the snail and where it had been was now one of our bank voles looking at me, completely still for about 5’, so I could take pictures.
c) Robin song more and more, sunflowers and asters more too.
Simplified: I asked my mate for a typecase to see if I can get my supps sorted in there for praps a week. Got not typecases, but just small plastic boxes with 10-12 big compartments from my mate, which is actually much better, cos that’s about what I need per day to get my 80 capsules in, and he’s got more if I find they help, just got to decide if the big or the small ones.
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

2023-10-10 Tuesday - recovery?: Apparently adapted better now, but my wife says I look dreadful (white-yellow face with black eye rims). RR/supp changes?: Seems OK-ish. VLDN?: Seems to be OK no further improvement aside from sleep, but shouldn’t be impatient, some people say it takes months till it works well, so I really can’t complain if it worked immediately altho there’s still such a wide spectrum of dosage possibilities…

What … worked / went wrong … today:

Habit encouragement… : (I’m doing it all, but still need this prompt)
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark:
Self-treatments: Jaw :white_check_mark:, wall sits :white_check_mark:, balancing :white_check_mark:, supps by 15:00: 5-fold bulk at 20:00 in 20’ :white_check_mark:, back by 16:00: :white_check_mark:, capsules by 17:00 :x:, but 21:00 a whole tub of threonate :white_check_mark:

How was I today?: Feeling 80-85%-ish (:white_check_mark:), energy today (:white_check_mark:, relatively), sleep Monday night :white_check_mark:, sleep Tuesday night :white_check_mark:.

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR :white_check_mark:, energy, esp. via VLDN :white_check_mark:, also now dry mouth, starting with brushing teeth more often, but a short mouth wash with salt water seems to be helping, see research

VLDN

Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00, 8th 14:20 0.125mg, 9th-10th 10:00 0.125mg.
VLDN :+1: for:

  1. Energy up from 10% to 18%: for activities :white_check_mark: - , walking: up from 5’ to 30’ :white_check_mark: - , listening: up from 3’ to 15’ :white_check_mark: - , stiffness :white_check_mark: - after postures still for 30’', but not all the time, like stairs etc., in the evening still shuffling around the flat, but quickly. Shorter recovery times :white_check_mark: - , all constantly :white_check_mark:. But :neutral_face:: still yellow/white face and black eye rims. As my wife is saying this more often it sounds as if it’s getting worse, but I can’t always see it myself (but sometimes I am startled by the black rims).
  2. Pain: overall Ache :white_check_mark: - better now toning down, but definite limit, local: lower back :white_check_mark: - definitely, less :white_check_mark: - definitely, hangover :white_check_mark: - nope.
  3. Muscles: eyes = vision (:white_check_mark:) - not really, bladder: pee frequency & urge (:white_check_mark:) - hmm, today not necessarily.
  4. Sleep: feel better in breaks, waking up better, more awake :white_check_mark: -
    VLDN :-1: Nothing any more, only as ever needing to “curb my enthusiasm”.

How to continue: Increased dose, but avoiding strain by only using half the extra energy I have :white_check_mark: - yup. Mornings better? :white_check_mark: - maybe.

RR: HIGH BP PERIODS after rest have seldom been proven longer than 5 or 10 mins (re-checked), around 4h/wk. Night dip usually 30%, sometimes phases of 10%, now focusing on implementing research for more reliable measurement and assessment, then trying to actively decrease.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 4:0 and 2:0 (moving 20%, talking 20%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 60%/4-5 ❌. White lips80% (❌). Exhaustibility "82%" ✅ and sleep ✅, 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, 6h slow, 1h30 medium, 30' quick
SLEEP (click for details): 8h01, up 5x (76'), not all deep, partly NSDR, but didn't hear much of it, not sure how much or why I had so many thoughts that I had to write down - too many stimuli I spose, not "restorative" and "awake", but not then tired once I've managed to get awake. ✅/❌, dry mouth better after washing mouth out with salt water, everything else OK ✅, 70%/2 (✅),➔ getting up: 70%/2 (✅).

Sleep 22:10-
23:35 7’
0:55 32’ (blog reasons to be cheerful…)
1:55 12’ (blog) 2:19 5’ (blog → NSDR… till… starts again)
3:20 20’ 6
6:00!
-7:27 Sum: 1h50+7h27-(7+32+12+5+20=)76’ = 9h17-1h16 =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Phone calls and cancelling my work for church - both good in the end, but stressful to do. Trying not to get as emotionally involved as my neighbour and esp. my wife in the recent news, incl. the Hamas attack. One insect bite on upper inner left thigh from 2 days ago is now swollen and getting more annoying, praps increasing sleep problems tonight as well as racing thoughts, despite being tired. NSDR necessary. 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.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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 starting LDN…

3) DOCS: Oct 11th: GP2's office called back they're getting all 3 things sorted: If the onco-office doesn't phone back inside of 2 weeks I should tell them, the cardio bloods are OK can be done like that again, GI still needs to be contacted. Last update Oct 10th: Reminded 2nd GP office about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - successfully researched dry mouth home remedies, as it seems up from 30 to 40% at the moment, but salt water rinse seems OK for a start. A bit more pee pain yesterday and partly today will have been from forgetting to prepare GABA half-capsules cos of my new system of preparing, made sure this evening and better tonight:
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. 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. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings. 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. 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: Dry mouth treatments I don’t seem to have tried yet:

Brush teeth regularly so mouth is clean. https://www.youtube.com/shorts/SV4QqYAQ9Rw and is regularly said. But starting to do so, the brushing itself doesn’t help short term at all.

Avoid mouth washes with alcohol, cos alcohol is drying - so my calendula essence is a problem if I use it more often (for virus protection and sore throat). https://youtu.be/1q4Ou9UEJDo?t=326, https://youtu.be/lP0P-zduVcQ?t=132

Remember dry mouth is bad for teeth (https://youtu.be/lP0P-zduVcQ)

And now comes the real stuff:
https://youtu.be/xNB7fEgEkG4?t=78 Yoga Institute Dr. Hansaji Yogendra
“metallic taste which leads to tastelessness”: Yes, thanks for that very understanding description!

  • Fennel is the only “spice” one she mentions that I tolerate, but I eat it a lot already.
  • Aloe vera juice: Stopped that, could try again.
  • gargling with salt water: Try, but doesn’t it cause dry lips? Tried it at 12:50… feels good actually :white_check_mark:, but my stomach gurgling at 13:10 suggests/reminds me that anything that stimulates saliva will also stimulate my stomach acid :x:. 14:00 no stomach problem, mouth moist. Not gargling, just swishing a few seconds.
  • water with baking soda 1/4 tsp and 1/8 tsp salt few seconds every 3h: Try.
  • sesame or coconut oil 15-20’ = gandush / oil pulling: Try.
  • yoga: filling mouth with water tightly: Try.
  • clean tongue, root of tongue: try again.
  • neck stretches for salivary glands: I do that anyway.
    Not for me
  • Drink warm water or hot garlic water and other spices.

Quality of life: 85%

Lessons in self-care: Continuing bit by bit.
Reasons to be cheerful:
a) Delightful in theory and significance, but very sad too: I picked up some dark stick thing in the cellar and it was soft so I let it fall again, then saw things sticking out from it, and looking close saw it was a small lizard, smaller than a little/pinky finger, with a completely bright orange belly it’s an Alpine newt (100% I’ve decided). Sad cos I may have killed it, happy cos it means there are reptiles in my garden, and all the stones and things have been worth it. I hope it wasn’t the only one! On the close ups I can see how lovely he was. I was trying to show my wife, but she was very sensitive cos of the Hamas attack etc., and I didn’t realize that on the close up you could see the head damage. :cry:.
b) A sparrowhawk or similar bird of prey (couldn’t see the tail length, just the wing spread) with carrion crow as entourage directly skimming above our garden again. I read recently that some birds have a warning call different for airborne to ground predators. But a sparrowhawk is so fast there’s no possibility for defence. In my ornithologist’s book he describes seeing a female sparrowhawk and a magpie struggle for 2 hours before the magpie died, a similar video is on youtube, but the sparrowhawk was so exhausted after that she also died. There’s no way I’ll be telling my wife this story at the moment, cos we still miss our magpie of last winter, maybe they’ll be a time. But for me it shows how complicated nature is.
c) The confused magpie is around fairly often, still wondering whether s/he’ll be our winter guest.
d) In next door’s garden we saw a pigeon feeding two fledglings, maybe from the nest next door to the other side, cos I’d seen and recorded there were two squabbling a week or 2 ago. Last babies of the year I guess. See how they go. Best put out food more regularly for them.
Simplified: 5-fold bulk preparation of supps for 5 days in the evening only took 20’, whilst for 1 days can take 8’. It can still be perfected e.g. using my mates boxes, which I have to clean first tho.
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

2023-10-11 Wednesday - recovery?: Stable. RR/supp changes?: OK I think, but still worrying. VLDN?: Stable.

What … worked / went wrong … today:
Starting to feel more confused.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark:.
Self-treatments: Jaw :white_check_mark:, wall sits :white_check_mark:, balancing :white_check_mark:, supps by 15:00: :white_check_mark:, back by 16:00: :white_check_mark:, capsules by 17:00 :white_check_mark:.

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

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR - nope, energy, esp. via VLDN :white_check_mark:.

VLDN

Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00, 8th 14:20 0.125mg, 9th-11th 10:00 0.125mg.
VLDN :+1: for:

  1. Energy up from 10% to “18”%: for activities :white_check_mark: - depends: cycling and stairs :white_check_mark:, other movement bad as ever :x:, walking: up from 5’ to 30’ :white_check_mark: - still better, listening: up from 3’ to 15’ :white_check_mark: - depends, stiffness :white_check_mark: - depends: stairs and sometimes getting up is quicker than before :white_check_mark: but I can also suddenly feel very heavy again, shorter recovery times :white_check_mark: - yes, all constantly :white_check_mark: - yes. But :neutral_face:: still yellow/white face and black eye rims.
  2. Pain: overall Ache :white_check_mark: - still a bit better, local: lower back :white_check_mark: - still zero, less :white_check_mark: - new things quickly resolved, hangover :white_check_mark: - still less.
  3. Muscles: eyes = vision (:x:) - worse, bladder: pee frequency & urge (:white_check_mark:) - at night, slightly worse in the daytime (:x:).
  4. Sleep: feel better in breaks :white_check_mark:, waking up better :x:, more awake :x:.
    VLDN :-1: Nothing any more, only as ever needing to “curb my enthusiasm”.

How to continue: Increased dose, but avoiding strain by only using half the extra energy I have :white_check_mark: - yup, this isn’t fake energy as such, it is on varying levels that I can’t pinpoint yet. Mornings better? :white_check_mark: - no idea yet.

RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? ❌ actively trying to decrease? ❌
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 and 2:0 (moving 20%, talking 30%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3-4 ❌, music 5' ➔ 60%/4-5 ❌. White lips80% (❌). Exhaustibility "82%" ✅ - it's really weird, cycling to a shop and back feels fairly normal, but in between in the shop I break down??, and sleep ✅ - 9h07, up 4x (18'), 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 "8h rest"), 1h very slow, 5h slow, 1h30 medium, 30' quick
SLEEP (click for details): 9h07, up 4x (18'), all deep ✅, using salt water for dry mouth ✅, salt paste for insect bite itch ✅ and waking up with nauseous sinus headache 40% ✅/❌, everything else OK ✅, 80%/2 ✅, ➔ getting up: 60%/2 ❌.

Sleep 22:30-
0:00 5’ (downstairs, salt water)
1:25 4’
3:10 4’ ddry cough despite salt water
5:05 itch → salt paste, not pee urge, cold (forgot long sleeve)
-7:55
Sum: 1h30+7h55-(5+4+4+5=)18’ = 9h25-18’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) (✅) - a lot today, managed it fairly well, but together it's frazzling me: 1) Phone call from GP#2 office, was nice tho. 2) At work someone I'd invited to talk to people didn't come, turned out both sides hadn't got the days right, starting to make me lose my footing. 3) Listening to Long Covid talk interesting but a bit of a strain doing it too long. 4) Short argument with wife about her blaming me or herself if something happened with no fault.... ("punching ball" / scapegoat) 5) Realizing I still hadn't got an answer to a mail about an supp order that I'd heard nothing about, but then saw they'd refunded cos out of stock - maybe better paypal next time. Nauseous burning headache for an hour after sleeping (too) long. O.o 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.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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 starting LDN…

3) DOCS: Last update Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - swishing with salt water now helps dry mouth ✅:
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. 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. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings. 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. 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

Trying to listen to a interesting talk about Long Covid…

Well-known German virologist Streeck described “post / Long Covid” as a potpourri of

  1. having had Covid severe enough to keep more permanent indirect effects, e.g. from intubation,
  2. virus persistence [like we know from EBV],
  3. autoimmune reactions caused by the spike protein, “probably similar to the post vac syndrome” [but later he goes further, see below],
  4. no somatic cause found, so psychosomatic. [Of course we hate people jumping to the conclusion of #4 just cos they can’t find anything yet or don’t know their way around things like MCAS.]

The numbers of Long Covid he said can only be answered if they start keeping these 4 types apart. The GP representative in the talk said each office has 2-4 patients with dramatic symptoms out of the blue, often ME/CFS type and in need of care, but they would have to disagree with those who say it’s 20% of people who got CoV.

He said that just pumping money into research is no guarantee for a helpful answer, better would be to gather all kinds of experts together, praps internationally, instead of in competition, immunologists, virologists, chemists, psychologists etc… Not as a round table, but dividing up the various areas.

He did actually then describe post vac as a form of Long CoV, saying you can get Long CoV from the jab spike protein as well as from the CoV spike protein itself. There still seems to be a difference to me, but I spose I can also see differences between different people with post vac, so maybe it’s kind of right to put the “spike protein reactions” together. Maybe more helpful than lumping all the Long CoV forms together.

Numbers in Germany for compensation for vacc injury / damage: after 190mio. jabs on 65mio. people there have been 9000 applications for compensation, 11% approved (said a journalist in that same talk). I haven’t applied… O.o

Quality of life: 85%

Lessons in self-care:
Gotta watch out things aren’t getting too much.
Reasons to be cheerful:
Still full of the animal stories of the last days. Not managing to do much in the garden, cos I’ve been doing more housework.
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

2023-10-12 Thursday - recovery?: falling back a bit. RR/supp changes?: Seems OK-ish. VLDN?: Hmm… was less better?

What … worked / went wrong … today:
Bit of stress.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark:.
Self-treatments: Jaw :white_check_mark:, wall sits :white_check_mark:, balancing :white_check_mark:, supps by 15:00: :white_check_mark:, back by 16:00: :white_check_mark:, capsules by 17:00 :white_check_mark:.

How was I today?: Feeling 75-85%-ish (:white_check_mark:), energy today (:white_check_mark:, relatively), sleep Wednesday night :white_check_mark:, sleep Thursday night :white_check_mark:.
The insect bite on the inner upper left thigh since Monday is still big, red, very itchy and sometimes wakes me up.

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR :white_check_mark:, energy, esp. via VLDN :white_check_mark:.

Digital scales weighed 76.5kg, but analogue same as always. around 78-79, which’d be OK.

VLDN

Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00, 8th 14:20 0.125mg, 9th-12th 10:00 0.125mg.
VLDN :+1: for:

  1. Energy up from 10% to “18”%: for activities :white_check_mark: - same, walking: up from 5’ to 30’ :white_check_mark: - probably same, listening: up from 3’ to 15’ :white_check_mark: - together with / talked with the kids for an hour!, stiffness :white_check_mark: - down vs. heaviness same (what triggers that tho?), shorter recovery times :white_check_mark: - yep, even after 1h talk, all constantly :white_check_mark: - yep. But :neutral_face:: still yellow/white face and black eye rims (but my wife didn’t mention it today, maybe cos she’s got a cold).
  2. Pain: overall Ache :white_check_mark: - that wasn’t the problem even after the long talking, local: lower back :white_check_mark: - good, less :white_check_mark: - good (I think one think came up, maybe right knee after sleep), hangover :white_check_mark: - good.
  3. Muscles: eyes = vision (:white_check_mark:) - , bladder: pee frequency & urge (:white_check_mark:) - again both worse today in the daytime :x:.
  4. Sleep: feel better in breaks, waking up better, more awake :white_check_mark: -
    VLDN :-1: Nothing any more, only as ever needing to “curb my enthusiasm”.

How to continue: Increased dose, but avoiding strain by only using half the extra energy I have :white_check_mark: - yep. Mornings better? :white_check_mark: - yep.

RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ (lost the tabs I was gonna read) measuring (❌) actively trying to decrease? (❌) - before bed after moving it was 140-150/80-90, then I made myself comfy leaning against the sofa, better for my back, and it immediately went down to 123/70, altho I thought like when you cross your legs that might make it go up.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 (moving 20%, talking 20%, counting 0%) ➔ 80%/3 (✅), moving ➔ 80%/3 (✅), talking 15' (60' with the kids, but of that only 15' talking myself) ➔ 80%/4 (✅), music 5' ➔ 60%/4-5 ❌. White lips80% (❌). Exhaustibility "82%" ✅ and sleep ✅, 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, 6h slow, 1h30 medium, 30' quick
SLEEP (click for details): 8h34, up 4x (53'), all deep. Why so long now? ✅, everything OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:15-
23:15 40’ 6
1:55 4’
4.21 4’
6:10 5’
-7:44 smiling
Sum: 1h45+7h44-(40+4+4+5=)53’ = 9h29-53’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Work mainly. 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.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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 starting LDN…

3) DOCS: Last update Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - swishing with salt water now helps dry mouth ✅:
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. 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. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings. 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. 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

Crossing legs - just a scan of quotes: Blood pressure increases when legs are crossed … at the knee in the sitting position. … Another explanation is that when the knees are crossed the leg muscles increase the resistance to the blood passing through the blood vessels, … Crossing the ankles in the sitting position has no effect on BP. / less of an effect. … increased systolic pressure by 2.5 mmHg in the… only showed a temporary increase. However, if you already have … statistically significant but very modest increase in Systolic Blood Pressure from pre- crossing to post-crossing legs. Leg crossing increased systolic blood pressure nearly 7 percent and diastolic by 2 percent. “Frequent crossing of the legs also puts stress …”

Quality of life: 85%

Lessons in self-care: -
Reasons to be cheerful:
a) Woke up smiling even tho work and boss have been getting on my nerves cos I’d been deployed for very special purposes, talking to only a few people about weird subjects like “sowing seeds” (appeared religious or something).
b) I’d sent our landlords a photo of a plant instead of the boiler.
c) Considering it’s a wet rainy day the sun is half-out quite a bit, it’s warm and pleasant, if a little moist - fine for me!
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

2023-10-13 Friday - recovery?: stable, but limited, always TT 4:0, but no chance of more games. RR/supp changes?: seems good, sometimes I check. VLDN?: Wondered whether to increase already, but for ease of checking I’ll best double from Monday.

What … worked / went wrong … today:
Glad of a work break made me revenge procrastinate and do gardening and garden research… but apart from that OK.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark: - except garden stuff going well into the night, so no ignored screen curfew.
Self-treatments: Jaw :white_check_mark:, wall sits :white_check_mark: - I think, balancing :white_check_mark: - while cycling isn’t as effective, supps by 15:00: :white_check_mark: (bullk), back by 16:00: later :white_check_mark: , capsules by 17:00 :white_check_mark: - ordered.

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

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR :white_check_mark:, energy, esp. via VLDN :white_check_mark:.

VLDN

Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00, 8th 14:20 0.125mg, 9th-13th 10:00 0.125mg.
VLDN :+1: for:

  1. Energy up from 10% to “18”%: for activities :white_check_mark: - always limited in amount, walking: up from 5’ to 30’ :white_check_mark: - should have been OK, listening: up from 3’ to 15’ :white_check_mark: - music still difficult, doesn’t get thru to me, listening and talking too is always over my limit, even when I do it, like today during evening table tennis, stiffness :white_check_mark: - still good, shorter recovery times :white_check_mark: - even after talking much too much the recovery time was fairly quick and not ‘bad’, all constantly :white_check_mark:. But :neutral_face:: still yellow/white face and black eye rims.
  2. Pain: overall Ache :white_check_mark: - still better, local: lower back :white_check_mark: - still no problem at all, less :white_check_mark: - still nothing new, hangover :white_check_mark: - still none now I’ve reduced overdoing it.
  3. Muscles: eyes = vision (:white_check_mark:) - bit more on and off, but depends on the light and the sun was hardly out and I’m reducing indoor light, bladder: pee frequency & urge (:white_check_mark:/:x:) - urge still a bit too much, except at night.
  4. Sleep: feel better in breaks, waking up better, more awake (:white_check_mark:) - but maybe ruined by too sleep late and sleep breaks procrastinating long. Importantly, sleep breaks are still less now I’ve switched (V)LDN to mornings, despite procrastinating and pretty much completely ignoring the screen curfew to do my garden stuff. That would mean taking it in the evenings seems to have caused more sleep breaks.
    VLDN :-1: Nothing any more, only as ever needing to “curb my enthusiasm”.

How to continue: Increased dose, but avoiding strain by only using half the extra energy I have :white_check_mark: - still definitely necessary. Mornings better? :white_check_mark: - definitely.

RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? ❌ actively trying to decrease? ❌. Need a break from this for a few days, best start again before the cardio appt. on the 23rd.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1, 3:0 (moving 30%, talking 40%, counting 0%) ➔ 80%/3-4 (✅, 4 ❌ from the talking), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/4 ❌, music 5' ➔ 60%/4-5 ❌ (I keep trying, wanting to like it). White lips80% (❌). Exhaustibility "82%" ✅ and sleep ✅, 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, 6h slow, 1h30 medium, 30' quick
SLEEP (click for details): 7h17, up 4x (1h37), all less deep, but fairly, mainly brain chattering about garden stuff, cos I've been going overboard on it after the desire building up, and fearing the autumn will change too much for me to identify what I haven't yet managed to. (❌, but 'my fault', so ✅), nostrils a bit annoying 10-20%, air moist? cos panes misted up in the morning as it's colder outside, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 23:10-
0:30 55’ 6
3:10 20’ fl15’
4:55 4’
6:26 18’ fl15’ poo
-8:04
Sum: 0h50+8h04-(55+20+4+18=)97’ = 8h54-1h37 =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: work a bit, then garden a lot, which is nice, but going overboard isn't that good, altho it fulfils desire which increases satisfaction, so there! 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.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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 starting LDN…

3) DOCS: Oct 12th: Garden research made me not want to do the doc phone calls. Last update Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - swishing with salt water now helps dry mouth ✅, pee urge sometimes stronger, sometimes frequency, has that got to do with GABA?:
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. 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. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings. 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. 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 garden ‘research’ tho… :smiley:
Partly cos my wife had switched to guest user on my laptop cos she couldn’t find ‘hers’, which caused having to reset which made me lose the health research tabs like BP/RR…

Quality of life: 85%

Lessons in self-care:
It’s time to do what I want after all that work. But I remember last time I didn’t do enough which later caused a few slight problems.
Reasons to be cheerful:
So satisfactory to do some garden stuff again and forget everything else!
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

2023-10-14 Saturday - recovery?: Still stable. RR/supp changes?: OK I think. VLDN?: Still 0.125, doubling Monday, still OK.

What … worked / went wrong … today:
Getting up was OK, altho late, garden stuff fun, tongue burning in the afternoon will be from histamine from hard cheese building up.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark:.
Self-treatments: Jaw :white_check_mark: - much less tender now I’ve been pressing the hurting spots for 2’/d - hard to find spots that still hurt a little so I think I’ll just go for ‘on demand’ with ‘zero tolerance’, wall sits :white_check_mark:, balancing :x:, supps by 15:00: :white_check_mark: - bulk, back by 16:00: :x:, later I think? :white_check_mark:, capsules by 17:00 :x:, it’d be time.

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

Today working mainly on … time management :white_check_mark:/:x: (allowing it), better self-treatments :white_check_mark:/:x: (but OK), RR: hardly (:x:), energy, esp. via VLDN :white_check_mark:.

VLDN

Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00, 8th 14:20 0.125mg, 9th-14th 10:00 0.125mg.
VLDN :+1: for:

  1. Energy up from 10% to 18%: for activities :white_check_mark: - only pretty slow energy, walking: up from 5’ to 30’ :white_check_mark: - probably OK, listening (people + music): up from 3’ to 15’ :white_check_mark: - “possible”, but still difficult, Ache then goes up to 5 :x:, stiffness :white_check_mark: - , shorter recovery times :white_check_mark: - , all constantly :white_check_mark:. But :neutral_face:: still yellow/white face and black eye rims.
  2. Pain: overall Ache :white_check_mark: - more from strain like filming or talking to people rather than moving, local: lower back :white_check_mark: - fine, less :white_check_mark: - fine, hangover :white_check_mark: - fine.
  3. Muscles: eyes = vision (:white_check_mark:) - better again usually, bladder: pee frequency & urge (:white_check_mark:) - still a bit annoying.
  4. Sleep: feel better in breaks, waking up better, more awake :white_check_mark: - yup.
  5. :-1: Nothing any more, only as ever needing to “curb my enthusiasm”.

How to continue: Increased dose, but avoiding strain by only using half the extra energy I have :white_check_mark: - . Mornings better? :white_check_mark: -.

RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? ❌ actively trying to decrease? ❌
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT :0 (moving 30%, talking 30%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 60%/4-5 ❌. White lips80% (❌). Exhaustibility "82%" ✅ and sleep ✅ - 8h20, up 4x (65'), 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, 6h slow, 1h30 medium, 30' quick
SLEEP (click for details): 8h20, up 4x (65'), all deep, better tonight, cos I felt much more pleasantly tired than the night before, stress is lessening. ✅/❌, hardly nostrils, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:35-
23:22 5’
0:35 25’ hp salt water 2xp0
2:15 15’ hp 10’
3:29 20’ 6
5:40 4’
-7:50 nostril/s0-10% dryhands0% nausea0% stomach0-10% sinuses0% headache0% stools0 loose% zombie0%. plugs0 cream0 gel0 wet0 heat teeth0
Sum: 1h25+7h50-(5+25+15+20=)65’ = 9h15-65’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Bite itch has calmed down at last. Burnt tongue and one salivary gland on the right hurting after eating too much cheese. Excitement (= stress) ✅: Hardly. 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.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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 starting LDN…

3) DOCS: Last update Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - swishing with salt water now helps dry mouth ✅, pee urge still annoying, but no local pains:
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. 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. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings. 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. 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

Quality of life: 85%.

Lessons in self-care:
Still toned down, moving slowly quite a bit, getting things done for my wife as well as myself.
Reasons to be cheerful:
a) Plant life:
aa) Checking old plant identifying mysteries in my photos before too much changes in the winter, I realized I am getting quite a bit closer to the 100%, but there are still some I re. the tool has to give up on.
ab) I finally got all my plants in an online “bird & bee” database on Friday, and that now changes the way I see them - almost all of the “weeds” are native here and are good for insects etc., even ones I thought were invasive. 7 are considered (potentially) invasive.
ac) Confusing that that database says organic insect seeds I bought and planted are all flowers that aren’t native here.
ad) It’s paid off to have zero tolerance with any fungi on ivy leaves this year. Esp. after having learnt that ivy is native and useful. Native praps meaning I don’t need to protect the firethorn or the lilac from it, altho they’re also good for insects?
ad) The area under the cherry where “nothing” grew, not even moss, is turning more and more into a tiny forest with the dead mossy branches, 8 replanted ferns, stinging nettles, some ivy is coming on after all and the replanted Nicandra, the apple of Peru/Sodom has done quite well, wonder if it’ll manage to blossom again like the others, the solanum nigrum nightshade didn’t really make it. I love the hedge maid patch there, hope they’ll increase. See where I can still get the snowdrops I was going to replant in the green Jan/Feb between all that…

b) Bird life:
ba) I thought I’d seen a pair of goldfinches jet past under the balcony the other day, now I could watch, photo & film them at heart’s content.
bb) A buzzard large as life on the roof opposite my window on Sunday morning. But why a jackdaw was keeping him company rather than the carrion crows I often see flying behind birds of prey I don’t understand and am curious.
bc) Woodpigeon Duey visited us once again, I thought he was caring for his twins, his wife BobStar is on our balcony or pavilion very often.

c) Animal life:
ca) Bank vole loudly eating something in my pot area, even directly in front of me, but invisible in the dense green.
cb) squirrel eating and partly collecting and probably spreading all the hazelnuts a friend is bringing, altho I can only see some are still there, opened, most have disappeared.
cc) Our guinea pig with chewing / tongue problems is now eating a bit in the cage, but we’re worrying a lot as his weight is often down at the moment and he’s often not taking food we’re offering.

d) Plant, bird & animal life:
da) 2(-3) (European) goldfinches - rare here in the garden - spent over half an hour feeding on my evening primrose seeds. Now no one has a chance to argue against me keeping all the wilted flowers up till spring.
db) Learnt to use my phone for filming better: HD and zoom does make quite a bit of difference.
dc) The time has come for the blackbirds to pick up the nice moss areas that have been growing on concrete. This year I know that is an important source of food, so I’m feeding them by putting the moss back afterwards, so insects can collect under it again.
dd) The past few weeks various kinds of bees have been feeding on the ivy “blossoms”. Now it’s wasps instead, strangely.

e) Human life:
ea) Nice to share a few things with my wife.
eb) Good she’s overcoming her cold and I didn’t get it (I believe I can sense when I’ve been too close too long, so like with CoV in shops keep it short. Ate on the balcony, nice and fresh, long johns help.)
ec) She was happy and keyed up coming home after a musical theatre performance she went to with a new friend. Good to see as she’s got lots of reasons to be sad and worry, what with guinea pig, my and her own health problems and quite a bit of stress at work and in the world which she reads too much about.
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

2023-10-15 Sunday - recovery?: Still stable at “82”% exhaustibility, able to use more moderate energy today. RR/supp changes?: Seems OK. VLDN?: up to 0.25mg from 16th on.

What … worked / went wrong … today:
Managed quite a lot without backlash - moving bricks in the garden, but knew when to stop - got them up and piled up, but then left them there for next time.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark: - yep, jump off hamster wheels (:white_check_mark:) - could have been better, but a few times I did.
Self-treatments: Jaw :white_check_mark: - found one of the probably last tender spots in the dent behind the ear, but the whole jawbone is now OK, wall sits :white_check_mark: - well horse stance 2x15’’ actually, balancing (:white_check_mark:) - not sure, supps by 15:00: :x: - no 19:00 (:white_check_mark:) and just for one day cos I’m using the new boxes with small compartments and want to see how that goes, back by 16:00: :white_check_mark: - did them but can’t remember when, capsules by 17:00 :x: - just what was absolutely necessary, need to do TMB (betaine HCl) and carnitine.

How was I today?: Feeling 80-90%-ish (:white_check_mark:), energy today (:white_check_mark:, relatively), sleep Saturday night :white_check_mark:, sleep Sunday night :white_check_mark: (yeah, not quite perfect yet, but hey, who’s complaining).

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR (:x:), energy, esp. via VLDN :white_check_mark:.

VLDN

Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg, 16th 0.25mg.
VLDN :+1: for:

  1. Energy up from 10% to “18”%: for activities :white_check_mark: - did a lot today, not that slow, more like moderate, walking: up from 5’ to 30’ :white_check_mark: - I’d think so, listening: up from 3’ to 15’ :white_check_mark: - managed half of a service by multi-tasking/distracting, I keep trying, stiffness :white_check_mark: - still good, shorter recovery times :white_check_mark: - still good, all constantly :white_check_mark:. But :neutral_face:: still yellow/white face and black eye rims.
  2. Pain: overall Ache :white_check_mark: - still quite good considering everything I did, local: lower back :white_check_mark: - none, less :white_check_mark: - yes, hangover :white_check_mark: - not much.
  3. Muscles: eyes = vision (:white_check_mark:) - OK-ish, bladder: pee frequency & urge (:white_check_mark:) - may be improving.
  4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake :white_check_mark: - .
  5. :-1: Nothing any more, only as ever needing to “curb my enthusiasm”.

How to continue: Increased dose, but avoiding strain by only using half the extra energy I have :white_check_mark: - kept the speed down. Mornings better? :white_check_mark: - yep.

RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, measuring (✅) a few times, research? ✅, actively trying to decrease? (✅) - using measuring as bio-feedback as well as trying to compare the reliability of measurements across various body positions, which is a bit fake, cos it varies so much anyway.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 (moving 20%, talking 20%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅) - good, did a lot, talking 15' ➔ 80%/3 ❌ - didn't talk much - may be improving, music 15' ➔ 70%/4 (❌) - bit better. White lips80% (❌). Exhaustibility "82%" ✅ and sleep ✅ - 8h14, up 4x (86'), 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): 8h14, up 4x (86'), almost all deep, but sometimes too tense from too excited garden thoughts. Slight top headache from 5 on, nostrils 0%, but dry hands 30% cos of washing hands more, so cream. ✅/❌, everything else OK ✅/❌, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:15-
23:25 60’ 6 fl30’ → tense cos of geranium video making me focus too hard on balcony plants in winter
2:39 6’ 2xRR
5:15 14’ 5:20 jaw dent. headache (top of head): 104 standing, 115 sitting arm up, 121 sitting arm down, 116 (5:24, sitting arm up) 124 (standing 5:26)
6:49 6’ slight headache still, so 70%/2, nostrils 0% airing and blinds up a bit to stop windows misting up (not heating yet). dryhands 30% cos of washing hands more, so cream
-7:55
Sum: 1h45+7h55-(60+6+14+6=)86’ = 9h40-1h26 =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) (✅): Feeding up the guinea pig after it'd lost weight and didn't seem to want to eat was stress, made me forget my own meal, my appetite hasn't been good the last few days, but then I remember to eat a glass of beans with yogurt, I always love that. Wife had a go at me in the evening cos shattered after the last weeks, doing too much, having to work on a Sunday and cos of worrying about our guinea pig who I only fed up for 1h instead of 2x. 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.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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 starting LDN…

3) DOCS: Last update Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - swishing with salt water now helps dry mouth with no side effects ✅:
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. 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. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings. 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. 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

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10014929: “the use of a statin can enhance blood pressure control and decrease 5.4 and 3.2 mmHg of SBP and DBP, respectively, after 3 months of treatment”. Hmm, should I start again after all…? They also say Silymarin, omega-3 fatty acids and niacin as nicotinic acid decrease blood pressure as well as lowering lipids, which I have increased, except silymarin which I could increase from 1 to 2x.5g/d it says in my supp table, I’m only taking 1x.5g.
I came across this study in my notes cos of my wondering if nicotinic acid raises or lowers BP, cos I thought the flush might be bad for blood pressure. Turns out if at all it lowers, so that would mean I can increase the amount of that again too, up from 0.5g to 1g with the 2nd meal like witht the first, but not in the evenings cos of sleep and usually eating much too late.

Quality of life: 85%

Lessons in self-care:
a) Kept speed down despite too much excitement to get more things done.
b) Once I realized my wife was in a bad mood after work I got the hell out of the flat down into the garden in the dark, ate a little at least, and discovered the bank vole in the feeding box… I knew I wasn’t the main reason and that it was daft that I didn’t try to feed Harley up more often, but I was in too many hamster wheels and she hadn’t written it down anywhere, I’d done everything she did. She shouldn’t expect me to remember everything just because I often do, I tell her that often enough.

Reasons to be cheerful:
a) Plant life:
aa) I recently coaxed a wild plant out of my meadow grass by bringing up its leaves and pushing the grass to the side. That made it really “proud” and is now showing the beauty of the leaves. So now I’ve done and am doing the same for other plants too, whilst considering which is more important for beauty, but esp. for wildlife.
b) Bird life:
ba) After the geese the past week now the cranes have decided it’s getting nippy and time to take time off in Spain and the south of France (ours here seldom fly down to Africa).
c) Animal life:
ca) Found out in the late evening why the hazelnuts I’m putting out for the squirrels end up opened in a small cardboard box in the bird food boxes with a small hole that was supposed to be for bird food. Couldn’t imagine the squirrels doing that… There was one heck of a scratching noise and I could quietly come closer and film with light on some small creature with a furry white belly and tiny paws at work inside - I spose our bank mole. Outside under the firethorn another was just as loud, but not as bold. Can’t say the bank mole is particularly shy anyway…
cb) A hazelnut in a hole in the lawn in the daytime will have been Squirrel though. S/he didn’t have time to close it up, so I did that. I used to find it annoying that hazels, cherries, walnuts, beeches and oaks come up ever so often, have tried to replant them, but now I know guinea pigs eat them it’s like an invisible veggie garden.
d) Plant, bird & animal life: -
e) Human life:
ea) Colleague wants to visit me on Thursday.
eb) Wife apologized in the morning for having a go at me.
Simplified:
a) I usually have a hell of a time getting out of my drainpipe trousers, esp. with the long johns and 5 pairs of socks still on, I even often get a kind of small claustrophobic panic attack. But tonight I just pulled them off inside out by pushing them down and standing on them with my other foot, and then turned them back right with my arms - that took less than a minute altogether! :brain: :exploding_head:
b) I’m now putting my capsules for a day in one of 6 small boxes with 10 / 12 compartments each instead of before using tubs and pill boxes for each of the days lots. In pill boxes the compartments aren’t big enough and I’d need to buy several, a “week” for 1 day. (And I hate buying plastic stuff or anything new and got these off of my TT mate.) That does now seem easier, just I forgot to do it for several days, which is praps good cos I’m not sure yet how it’ll work out. I was trying to get my head around how to get the pills out of the compartments again without splattering the others all over the place, cause unlike a real pill box there’s only one lid for all. After thinking of and trying bits of cardboard, some kind of spatula, I realized just a teaspoon will do OK for the time being. Still looking for a way to just drop all the usually 20-25 pills for one serving into a tub. But maybe I can adjust to not use the tubs anymore at all.
c) Halting on my bike and waving cars waiting for me to pull over in front would have saved me a lot of energy…
d) Tired after back from the shops I realized putting the handles of my cotton bags over the stair handrail ends instead of putting the bags on the ground and having to bend down and pick them up again.

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

2023-10-16 Monday - recovery?: Same. RR/supp changes?: Same. VLDN?: up to 0.25mg from 16th on. I could call it LDN now. Hangover feeling (without having overdone it!), slight GI, slight gibberish dreams

What … worked / went wrong … today:
Stable. Forgot to take the VLDN at 10:00, but 12:00 is OK? Side effects again, but slight, and a brisk 20’ walk with my wife in the evening was absolutely no problem.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark:,
Self-treatments: Jaw :white_check_mark: - tendons in dents behind ears are better already, wall sits :white_check_mark: - 3-4 horse stances, balancing :white_check_mark:, supps by 15:00: :white_check_mark: - 16:00 for 6 days! :trophy:, back by 16:00: :white_check_mark: not sure when, capsules by 17:00 :white_check_mark: - quite a bit, the bulk preparation is encouraging me to encapsulate more.

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

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR :x:, energy, esp. via VLDN :white_check_mark:, also eating better.

VLDN

Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th 12:00 0.25mg (half a 0.5mg capsule)
VLDN :+1: for:

  1. Energy up from 10% to 18%: for activities :white_check_mark: - no better directly yet after the doubled LDN dose, walking: up from 5’ to 30’ :white_check_mark: - kept up with wife too!, listening: up from 3’ to 15’ :white_check_mark: - but it has to be very calm stuff and I need to really love it: difficult!, stiffness :white_check_mark: - same = definitely better, shorter recovery times :white_check_mark: - same = definitely better, all constantly :white_check_mark:. But :neutral_face:: still yellow/white face and black eye rims - and white lips my wife said today.
  2. Pain: overall Ache :white_check_mark: - better except hangover, local: lower back :white_check_mark: - good, less :white_check_mark: - good (a short pang now and then here and there reminds me that they’re all under control). Hangover now needs to be under 5) :-1:, cos today it showed it wasn’t a pain or overdoing it problem, it’s directly from the LDN.
  3. Muscles: eyes = vision (:white_check_mark:) - quite good I think, bladder: pee frequency & urge (:white_check_mark:) - still a bit high.
  4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake :white_check_mark: - yes, but many breaks, probably due to dose doubling.
  5. :-1: Hangover :x: - YESSSSS! 3-4 hours, I’m sure from the dose doubling, and hadn’t overdone anything like last time. In the evening (9h after taking it) GI (5’ wind before sleep and a bit of abdominal pressure for short times during 4h of the night) again. Dreaming gibberish and more breaks. But all less than when starting.

How to continue: Increased dose, but avoiding strain by only using half the extra energy I have :white_check_mark: - still best procedure. Mornings better? :white_check_mark: - Still think so, but as the breaks have increased I need to watch this.

RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? ❌ actively trying to decrease? (✅) - slomo all the time.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 2:2 cos wet, and 2:0 (moving 30%, talking 30%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/3 ❌. White lips 90% ❌. Exhaustibility "82%" ✅ and sleep ✅: 8h19, up 6x (59'), GI + weird dreams slightly, 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): 8h19, up 6x (59'), all deep ✅, restless lower back 5', gut a little for 4h (✅), dreaming weird, throat10% and nostril/s 5% in morning, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:10-
22:55 5’
23:45 5’ restless lower back, gurgling gut.
0:30 5’ back + gut
1:20 10’ back better, gut + pee + slight abdominal, left this time, stopped at the end of the break.
2:52 4’ small firm poo, longest sleep stint so far. Back + abdomen still good.
5:32 30’ 6
-7:28 dreaming gibberish, nostrils slight
Sum: 1h50+7h28-(5+5+5+10+4+30=)59’ = 9h18-59’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Weight down to <78kg, but working on eating better. Excitement (= stress) ✅: Kept it low. Trying to listen to more music wasn't too good. 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.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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 starting LDN…

3) DOCS: Last update Oct 16th: Dentist tomorrow, whilst the going's good... Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - swishing with salt water now helps dry mouth ✅:
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. 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. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings, 16th: 2.5mg in the mornings. 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. 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: 85%

Lessons in self-care:
a) Toned down a bit cos of Increasing the LDN-dose.
Reasons to be cheerful:
a) Plant life:
aa) The topinambour/Jerusalem artichoke sunflowers are changing, getting steeper petals and the middle is very brown on some, confirming that they are Jerusalem artichoke sunflowers, but the others are yellower, so might be laetiflorus.
ab) Harvested half the 2nd big sunflower, leaving the rest for the birds. Someone said one head has 1000 seeds, counting these roughly about 500.
b) Bird life:
ba) 2 male blackbirds fled from near my cellar entrance - 2 together must’ve been subadults.
bb) My wife saw the 2 subadult pigeons being fed again.
bc) Such a sight/show when the jackdaws do their evening round, today all 300 directly over our garden like a spread out swarm of fish.
bd) I think I identified the pigeon feeding the twins as “Brother”, which’d explain why they’re usually next-door-but-one, but doesn’t explain where Duey is most of the time…
c) Animal life:
ca) Squirrel scarpered over and around us during TT.
cb) bank vole opening hazelnuts audible in the daytime too.
d) Plant, bird & animal life: A few sunflower seeds had already been harvested. Let’s see if they can get the rest now or if I have to bind it up so easier to get to.
e) Human life: -
ea) Someone on a forum thanked me in a heart-warming way.
eb) TT 2x - always fun.
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

2023-10-17 Tuesday - recovery?: Yep, till smashed by dentist, starting anew. RR/supp changes?: Think so: time to check again. LDN?: up to 0.25mg from 16th on - yeah.

What … worked / went wrong … today:
Keeping moving after dentist, more and more as possible.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark:.
Self-treatments: Wall sits :white_check_mark:, balancing :white_check_mark:.

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

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR :x:, energy, esp. via VLDN :white_check_mark:, and esp. after the dentist yesterday.

VLDN

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

  1. Energy up from 10% to 18%: for activities :white_check_mark: - well, the dentist did bring it down to 8% but recovery seems imminent, walking: up from 5’ to 30’ :white_check_mark: - would I guess be, listening: up from 3’ to 15’ (:white_check_mark:) - well to 2 special tracks definitely but nothing else, stiffness :white_check_mark: - after the dentist no stiffness I was generally slowed, shorter recovery times :white_check_mark: - I think so, all constantly :white_check_mark:. But :neutral_face:: still yellow/white face, black eye rims and white lips.
  2. Pain: overall Ache (:white_check_mark:) - dentist, local: lower back :white_check_mark: - good, less :white_check_mark: - yes, hangover (:x:) - I thought I could detect it under all the muck.
  3. Muscles: eyes = vision (:white_check_mark:) - dunno, bladder: pee frequency & urge (:x:) - maybe slightly better.
  4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake :white_check_mark: - think so.
  5. :-1: Oct 16th on: night breaks (GI - no :white_check_mark:, dreams - no (:white_check_mark:), hangover feeling - think so (:white_check_mark:).

How to continue: Keeping 0.25mg for a week watching side effects:

RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? ❌ actively trying to decrease? (✅) - slomo.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 and despite dentist 1:0 8' (moving 20%, talking 20%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ➔ ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "82%" ✅ down to "92%" after dentist ❌, decreasing very slowly, and sleep ✅ OK, click for details:
EXHAUSTIBILITY today: “82%" / "92%". 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): h ✅/❌, everything else OK ✅/❌, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:40- long johns
0:18 6’
1:28 7’ (1:34 109)
3:25 5’ gurgling gut 60%, sinus burning 10% , nausea 0-10%, nostrils 5%, headache 5%, other 0%.
6:03 7’ everything better, but headache worse 20%, front of top of head
-7:35 left shoulder
Sum: 1h20+7h35-(6+7+5+7=)25’ = 8h55-25’ = 8h30, up 4x (25’), all deep.

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) (✅): Talking twice. The dentist wasn't mental stress, just "injury". 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.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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. Listening 15’ to very selected music improving.

3) DOCS: Last update Oct 17th: Tooth filling had to be done much more complex, so x-ray, then 30'(?), ending with gagging. Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. 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% :white_check_mark:, appetite :white_check_mark:, pee pain: 0p1-2 :white_check_mark:, lower back unrest :white_check_mark:. Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND :white_check_mark:, dry mouth (day and) at night at least not hurting/sticky (:x:).

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. 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. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 1st: LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings, 16th: 2.5mg, mornings. 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. 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: 85%

Lessons in self-care:
a) Keeping even lower today, but realized that being outside even in the cold and moving a bit is better than inside resting.
b) It seems my Ache increases quicker and higher when I’m losing at TT (whether “deliberately” or not), and not able to get back up - embarrassing, as if it were a problem, but shouldn’t be. I guess if I want to try to get back up, it puts a lot more strain on me. So I need to note that immediately and de-strain.
Reasons to be cheerful:
a) Plant life:
aa) Someone had put a book about pots and containers in front of our house, I think cos I was talking with them the other day about my plants. I did skim it thru altho most of it was a bit too “proper” for my wild liking. But it did inspire me to start building my planned small stone garden “landscape” more, and look at my pots a bit differently.
b) Bird life:
ba) blackbird comes near cellar entrance praps cos of moss there, that’s the only attraction I can think of.
bb) 100s of wild geese migrating in smaller groups all day (probably no cranes yet after all),
bc) 100 jackdaws very low over garden this evening,
bd)
c) Animal life:
ca) Groups of small white balls are slug eggs and I’m now asking on a site what to do if I can’t be sure if they’re from good or bad slugs.
cb) Squirrels squirrels everywhere I go.
cc) Took over feeding up guinea pig Harley for a few minutes in the evening, quite nice actually, altho dead tired.
d) Plant, bird & animal life:
e) Human life:
ea) Managed 2x TT with all the laughter as ever.
eb) Interesting talk with table tennis mate about his work, where he was thankful that I could warn him that something he was doing may not be quite that could for the people he is doing it with.
ec) Mate phoned me and I stretched that to 20’ altho my Ache was up to 5 inside of 10’.
ed) Wife pleased after being over to a friends.
ee) Cashier young woman bashfully made conversation in shop before closing time about going back out into the “cold” on a bike - sweet, I always thought she had self-confidence, but didn’t then.
f) Environment: Beautiful sky colours this morning, turning from scarlet to pastel orange.

Simplified: Getting used to my new way of getting my drainpipe jeans off is taking it down to 30’'. I just have to remember the beginning: pressing the upper leg part down. Turning outside in only takes a few seconds now.
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

2023-10-18 Wednesday - recovery?: Not complete from yesterday, but quickly better. RR/supp changes?: First measurements again confirm it’s usually OK. LDN?: up to 0.25mg from 16th on. How weird that I can play table tennis with full paddle & ball control constantly due to the LDN, but still only a limited time, and still only with restriction of movement and talking. I think that ‘control’ belongs to the LDN muscle effect, #3.

What … worked / went wrong … today:
Stable. 2 focal seizures I can’t explain unless I prepared less GABA pills without realizing, but only once a month is good.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark:.
Self-treatments: Wall sits :white_check_mark: - as horse stance, balancing :white_check_mark: - sometimes difficult, often easy.

How was I today?: Feeling 75-85%-ish (:white_check_mark:), energy today (:white_check_mark:, relatively), sleep Tuesday night :white_check_mark:, sleep Wednesday night :white_check_mark: - maybe too good and needs to be less.

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR :white_check_mark: a bit, energy, esp. via VLDN :white_check_mark:.

VLDN

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

  1. Energy up from 10% to 18%: for activities :white_check_mark: - slowmo, walking: up from 5’ to 30’ :white_check_mark: - yep, listening: up from 3’ to 15’ (:white_check_mark:) - depends/improving, stiffness :white_check_mark: - yep, shorter recovery times :white_check_mark: - definitely - not much more than one day for the dentist, all constantly :white_check_mark:. But :neutral_face:: still yellow/white face, black eye rims and white lips.
  2. Pain: overall Ache :white_check_mark: - same, local: lower back :white_check_mark: - same, less :white_check_mark: - same / watching, hangover :white_check_mark: - no.
  3. Muscles: eyes = vision (:white_check_mark:), bladder: pee frequency & urge (:white_check_mark:) - better, :ping_pong: constantly full paddle & ball control :white_check_mark:.
  4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake :white_check_mark: - .
  5. :-1: Oct 16th on: night breaks (GI :white_check_mark:, dreams :white_check_mark:), hangover feeling :white_check_mark:.

How to continue: I was aiming to keep 0.25mg for a week watching side effects, but actually they’ve totally gone again inside of 3 days, so I’ll jump to 0.5mg sooner.

RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? (✅) actively trying to decrease? (✅) - slomo.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 and 2:0 (moving 20%, talking 20%, counting 0%) ➔ 90%/2, but when I got caught up in losing it went up to /3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌ - improving, music 10' ➔ 70%/3 ❌ - improving. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅, 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): 8h48, up 4x (59'), all deep, except at 4 for maybe 15' ✅. The 20% nauseous sinus headache when waking up the last times might again be cos of sleeping too long. Next: try sleeping less. ✅, everything else OK ✅, 80-70%/2 ✅, ➔ getting up: 80%/2 ✅. I do feel a like too tired at night, is that the LDN?

Sleep 22:30-
23:40 5’
1:50 20’ (outside for slug photo)
3:30 30’ 6. 60%
6:50 80% throat 10% 4’ nauseous 10% stomach 10%
-8:17 nostrils & nauseous sinus headache 20%.
Sum: 1h30+8h17-(5+20+30+4=)59’ = 9h47-59’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Getting more sensitive that slight opposition of cars etc. strains me quite a bit, working on that. 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.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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. Listening 15’ to very selected music improving.

3) DOCS: Last update (Oct 18th: Got a uro appt. for the 8th.) Oct 17th: Tooth filling had to be done much more complex, so x-ray, then 30'(?), ending with gagging. Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) - at night I had a few small pangs in my left hand tendons, so will work on those too, as well as my jaw joint dent:
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - Oct 18th. 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 - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 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. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. 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. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings, 16th: LDN 0.25mg, mornings. 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: 85%

Lessons in self-care:
When I’d’ve had to manouevre past a car coming towards me it caused high strain, so very quickly I went to the side.
Reasons to be cheerful:
a) Plant life:
aa) I’m considering writing down the list of wild plants in front of our house for a bit of education, cos some people do ask “why”. Seems over the top tho.
b) Bird life:
ba) A green woodpecker is around and once flew directly over the garden shouting so loudly startling, as well as probably startled.
c) Animal life:
ca) bank vole with his big ears and eyes greeted me perkily out of the hole of the cardboard bird food box and I could film him at heart’s content. Bit like Tom’s Jerry…
cb) outside at 2 for slug photo on the egg I broke, only 1 Spanish slug tho, not tiger or black-keel like I was hoping. But “the website” where I asked what to do with the slug eggs said if I only have 3 Spanish slugs and praps some others too, in doubt for the accused, leave the eggs hidden. But I’ve already brought them out cos of the bricks they were in that I needed for my stone garden, I’ll have a look
d) Plant, bird & animal life:
da) Putting out more guinea pig straw into the garden today as mulch was fun.
db) Got some fresh grass from outside for the guineas, they squeaked delightedly as soon as I came thru the door, they could apparently smell it cos it was fresh and wet.
e) Human life:
ea) Wife’s in a kind mood, that’s nice.
eb) Looking forward to colleague and friend coming tomorrow, let’s see if I can take more than 20’ of them…
ec) TT twice fun(ny) as ever.
f) Environment:
fa) I do love the fresh air, and am still always warm enough, although everyone’s complaining it’s cold, I think that’s just cos I’ve got full winter attire on, keep moving and am now watching out for changing wet shoes quicker.
fb) There are so many beautiful >100yo buildings around us, I aim to cherish them and that more and stop taking them for granted.
Simplified: -
Foggies: Lots of things fell down today, like the egg I’ve left out for hedgehog and slugs.

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

2023-10-19 Thursday - recovery?: Did quite a bit with only short backlashes. RR/supp changes?: Measurements difficult now it’s cold and I’m outside. LDN?: jumping up to 0.5mg from 20th on.

What … worked / went wrong … today:
Lots of talking 40’, 60’ and 20’, strain depending with whom and which topic, backlash OK from the LDN.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark:.
Self-treatments: Horse stance :white_check_mark:, balancing :white_check_mark:. Increased jaw, see below.

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

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR :white_check_mark:, energy, esp. via VLDN :white_check_mark:.

Darkness
By the way, it’s getting dark before 19:00, and I’m keeping most lights off indoors, and starting to use candles along with the low lights that my wife has always preferred anyway.

VLDN

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 :+1: for:

  1. Energy up from 10% to 18%: for activities :white_check_mark: - gardening / talking / TT, walking: up from 5’ to 30’ :white_check_mark: - reckon so, listening: up from 3’ to 15’ (:white_check_mark:) - still not easy, stiffness :white_check_mark: - still good, shorter recovery times :white_check_mark: - still good, all constantly :white_check_mark:. But :neutral_face:: still yellow/white face, black eye rims and white lips.
  2. Pain: overall Ache :white_check_mark: - still better, local: lower back :white_check_mark: - yes (except if I stay up longer in a sleep break, another reason not to do so, less :white_check_mark: - yes, hangover :white_check_mark: - no.
  3. Muscles: eyes = vision (:white_check_mark:) - OK-ish, bladder: pee frequency & urge (:white_check_mark:) - OK-ish.
  4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake (:white_check_mark:) - got up earlier since I’ve been sleepy even after 8h+, and that was OK-ish, I was awake quickly despite the dark by using a daylight lamp, but I may be slightly more tired after that.
  5. :-1: Oct 18th-19th: Nothing. Surprisingly loose stools Friday morning before upping the LDN.

How to continue: Side effects of 0.25mg gone in 2-3 days, so jumping up to 0.5mg on 20th.

RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? (✅) actively trying to decrease? (✅) - slomo.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅) - but shorter and less bad, hardly post postural ache ✅. Stiffness ✅. TT 2:2 cos of rain, but my mate said it was 3:1; later "1:1" (moving 30%, talking 20%, counting 0%) ➔ 80%/3-4 (✅), gardening/moving ➔ 80%/3 (✅), talking 40' with colleague ➔ 50%/6 ❌❌, 60' with old friend ➔ 80%/3 ❌, 15' with table tennis mate #2 ➔ 70%/4 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅, 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): 7h41, up 5x (36'), all deep. ✅/❌, everything else OK ✅/❌, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:20-
23:32 20’ fl15’ 2xp0 (2nd time a lot of ml. Cos of the 1L in the evenings)
1:03 4’
2:27 4’
4:12 4’
5:40 4’ salivary gland still hurts, sucking and spreading saliva for dry mouth helps.
-6:37. That should be enough sleep.
Sum: 1h40+6h37-(20+4+4+4+4=)36’ = 8h17-36’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. 1-2 days recovery from complex filling on 17th. Excitement (= strain rather than stress) (❌, but OK considering ✅): 3x talking pretty long. 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% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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. Listening 15’ to very selected music improving. 20th LDN 0.5mg.

3) DOCS: Now I've grown sure I shouldn't take the urine retention med that my urologist #2 prescribed when phytosterols didn't work, drinking 1L for the evening meal and at night is probably the main reason, and drying me up even more everywhere else is the last thing I want (mouth, lips, throat, stomach, skin...). Last update Oct 17th: Complex 30' tooth filling. Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)). 3rd focal seizure at 11:00 during table tennis. Jaw I'm working on diligently, not just the old and new spot dent behind each ear, but today I realized that there are spots under the jawbone from the inside that I hadn't found before. Whilst talking with my old friend, standing too long made rib muscle pain on the right start up, and could press that down. Later I got a pain in my left knee similar to the one in my right, which I normally solve by stretching, and this time I tried to find spots to press, but couldn't, so I'll be continuing that and doing stretches too. Dry mouth at 6 combated just with gathering and spreading saliva, just not sure what to do when lips get dryer, since licking lips is bad for them? Details:
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: 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. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. 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. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings, 16th: LDN 0.25mg, mornings, 20th: 0.5mg, mornings. 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? No.

Quality of life: 85%

Lessons in self-care:
I watched very carefully when I was getting strained, when talking which topic with which person, and then de-stressed = relaxed, took myself out of the “delivering” role, just went passive or changed the topic.
Reasons to be cheerful: After “e) human life” and “f) environment” I’ve now added “g) my body”.
a) Plant life:
aa) For more colour in my wild plant & dead wood arrangements in front of the house I used red vine leaves dropped from a neighbour’s vine on to the street and then remembered that I also enjoyed seeing pink rose petals from the roses in the communal area opposite our house, so started using those for “flower arrangements” of a/my different kind.
b) Bird life:
ba) Jackdaws are so cheerful personalities, it’s so exciting to see and hear them chatter and enjoy their evening flight in the big group. One today really shouted his gleeful flight call twice as loud as usual.
bb) All the small birds (dunnocks, robin, great and blue tit) suddenly very close, despite rain, quiet probably due to it. The dunnock doesn’t mind me moving too much. Now I can see how all the plants are helping them get food to peck. The colder it’ll get the more they’ll need it and be prepared to take more risks.
bc) But I can hear a quiet blackbird in the bushes, and coming out nervously, encouraged by the small ones.
bd) Need to put food out, so cold and wet and BobStar has been maltreated at her neck feathers, maybe a cat.
c) Animal life:
ca) A bat this evening didn’t care that it was raining. Not quite as big as one the other day, or s/he was flying higher.
cb) So I’ve left the slug eggs half-hidden in the bricks which are too low down in holes for birds to get out, altho they’re now out in the open.
cc) Pity I haven’t seen the black slug again and been able to photograph it to try to identify it better. Actually I’d’ve thought the two light stripes on the end part would make that easy. But I can’t find a single picture of this, only one one dreamstime with one white stripe in the middle.
d) Plant, bird & animal life:
e) Human life:
ea) Great to talk about all these with my friend, he’s more of a nature lover than I realized. He was esp. interested in my alpine newt, but also was curious about and cherished everything in the garden and things we talked about, like that jackdaws migrate.
f) Environment:
Beautiful pearls of rain on the roses, Scotch broom, grass and greater celandine.
g) Body:
ga) Pretty full control of TT paddle and ball.
gb) Nimbly up and down stairs.

Simplified:
a) Sucking out and spreading saliva for dry mouth using mouth movements and tongue.
b) Pressing jaw points as soon as any small pangs remind me, plus when resting my head in my hand anyway, starting to get automatic.
Foggies: Ah, dropping things again (almond milk… :roll_eyes:) several times made a mess and work…

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

2023-10-20 Friday - recovery?: Still good. RR/supp changes?: Seems OK. LDN?: jumping up to 0.5mg from 20th on. :bulb: It’s supp drink earlier before the 3rd meal that will be better for sleep!

What … worked / went wrong … today:
Pretty good actually, getting used to the cold rainy weather too.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark:. Try again to pull 3rd meal forwards to 18:00-19:00. (:white_check_mark:): Hmm, supps at 19:00, doesn’t seem early enough.
Self-treatments: Horse stance :white_check_mark:, balancing :white_check_mark:, :x:.

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

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR :white_check_mark:, energy, esp. via (V)LDN :white_check_mark:.

(V)LDN (0.5mg would be smaller than usual, but still no longer VLDN)

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
LDN :+1: for:

  1. Energy up from 10% to 18%: for activities :white_check_mark: - OK till hangover came up, walking: up from 5’ to 30’ :white_check_mark: - completely normal brisk speed for 23’, listening: up from 3’ to 15’ (:white_check_mark:) - found some melodic acoustic guitar music I could listen to longer, stiffness :white_check_mark: - yep, shorter recovery times :white_check_mark: - think so, all constantly :white_check_mark: - yep. But :neutral_face:: still yellow/white face, black eye rims and white lips - very fitting to the hangover feeling…
  2. Pain: overall Ache :white_check_mark: - yep, local: lower back :white_check_mark: - yep, less :white_check_mark: - yep, hangover :x: - once again, at 14:00, from increasing the dose, not from overdoing it.
  3. Muscles: eyes = vision (:white_check_mark:) - too dark day to decide!, bladder: pee frequency & urge (:x:) - OK-ish.
  4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake :white_check_mark: - OK-ish.
  5. :-1: Nothing really since Oct 18th :white_check_mark:, except 20th: hangover 14:00-17:00, but hardly GI (slight pressure left upper abdomen 7:00, but firm stools), no weird dreams.
    Interesting reading on this German site that LDN might make listening to music less pleasant, anecdotes not conclusive. In my case listening to music had become a problem before LDN, I first noted it on Sept 24th, and started LDN on Oct 1st.

How to continue: Side effects of 0.25mg gone in 2-3 days, so jumping up to 0.5mg on 20th. No side effects, so staying there a few days, no further improvement either.

RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? (✅, see details) actively trying to decrease? (✅) - slomo.

|16:08:00|154|76|60|20.01.23|
|16:09:00|146|85|58||
|16:10:00|138|85|59||
|16:11:00|143|85|61||
|16:12:00|135|82|58||
|00:26:00|128|64|48||
|05:02:00|108|73|62||
|07:09:00|132|87|53||
|07:16:00|117|81|52|having typed|
|07:19:00|123|77|57| „|

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. no TT, I could have tho, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 (✅) - depends, music 15' ➔ 70%/3 (✅) - depends. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅, 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): 8h05, up 4x (24'), all deep. ✅, thirst headache at 5, BP OK (108/73), everything else OK ✅/❌, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:15-
0:23 7’ 0:29 128/64 48
1:19 4’
2:25 5’
4:55 8’ thirst headache? → problem for my idea to pull drinking forward. 5:02 108/73
-6:44 overfirm stools (#1?)
Sum: 1h45+6h44-(7+4+5+8=)24’ = 8h29-24’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. 1-2 days recovery from complex filling on 17th. Excitement (= strain rather than stress) ✅: getting 48L of almond milk on and off my bike was a bit tough, but 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% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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. Listening 15’ to very selected music improving. 20th LDN 0.5mg.

3) DOCS: 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) Last update Oct 17th: Complex 30' tooth filling. Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. 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% :white_check_mark:, appetite :white_check_mark:, pee pain: 0p1-2 :white_check_mark:, lower back unrest :white_check_mark:. Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND :white_check_mark:, dry mouth (day and) at night at least not hurting/sticky (:x:).

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. 2x 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. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. 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. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings, 16th: LDN 0.25mg, mornings, 20th: 0.5mg, mornings. 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 this German site says works by blocking µ1-Receptors for 4-5 hours, which increases endogenous opioids (endorphins), which are anti-inflammatory, as well as decreasing the neurotransmitter glutamate which decreases overexcitability of the cells. Once the blockage stops, this starts working via a rebound effect.
Wikipedia says the endorphins might upregulate the immune system and the anti-inflammatory effect might be from antagonizing toll-like receptor 4 found on macrophages (incl. microglia).
Normal dose of naltrexone if I understand wikipedia correctly reinforces GABA.

Quality of life: 85%

Lessons in self-care: -

Reasons to be cheerful: After “e) human life” and “f) environment” I’ve now added “g) my body”.
a) Plant life:
aa) Got more red leaves and pink petals.
ab) About time I solved more photos.
b) Bird life:
ba) Beautiful jackdaw evening round at 18:15.
c) Animal life:
d) Plant, bird & animal life:
e) Human life:
f) Environment:
fa) Rain all day, first cold then warm - all no problem, outside as much as ever, just no table tennis.
fb) Getting used to being out in the dark a bit, did it in the morning too.
g) Body:
ga) Hangover only 3h, rest of the time fairly able-bodied.
gb) Wow, I can now pretty reliably go for a fast walk with my wife, since (V)LDN, that’s real fun.
Simplified: -
Foggies: Still dropping / dripping things: Need to take more care and not get in an excited rush.

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

2023-10-21 Saturday - recovery?: same. RR/supp changes?: same. LDN?: jumping up to 0.5mg from 20th on - same.

What … worked / went wrong … today:
TT went well, but I do always notice a slight strain whether doing housework or that.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark:. Eat 19:00 :x:, but 19:20 :white_check_mark:
Self-treatments: Horse stance :white_check_mark:, balancing :white_check_mark:.

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

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR :white_check_mark:, energy, esp. via LDN :white_check_mark:.

(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 :+1: for:

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

How to continue: Side effects of 0.25mg gone in 2-3 days, so jumped up to 0.5mg on 20th.

RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? (✅) actively trying to decrease? (✅) - slomo.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 4:0 (moving 20%, talking 20%, counting 0%) ➔ 80%/3 ✅ (didn't think about playing longer cos it was raining in the 4th game), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌ (acoustic guitar music and similar, for 15' ✅, then suddenly wham ❌. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅, 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): 7h57, up 5x (38'), all deep. ✅/❌, everything OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:05-
22:54 7’
23:50 5’
1:15 7’
3:00 15’ fl10’
5:25 4’
-6:40
Sum: 1h55+6h40-(7+5+7+15+4=)38’ = 8h35-38’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. 1-2 days recovery from complex filling on 17th. Excitement (= strain rather than stress) ✅: Only the music listening problem I think. 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% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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. Listening 15’ to very selected music improving. 20th LDN 0.5mg.

3) DOCS: Last update Oct 17th: Complex 30' tooth filling. Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. 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. feedback from onco appt. Apr 24th is STILL pending.

4) UNDER CONTROL ✅ (attention necessary (✅)) Block from sweet potatoes at 14:50:
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 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: Block from 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?

What if the urine retention med manages to keep more liquid in my body, so keep it moist, rather than dry it out? Nah, looking at the research and forums: https://www.askapatient.com/viewrating.asp?drug=21518&name=VESICARE, Vesicare (solifenacin succinate) - Bladder Health UK Forums, and dementia not impossible 2022 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8851948/

Quality of life: 85%

Lessons in self-care: -

Reasons to be cheerful: After “e) human life” and “f) environment” I’ve now added “g) my body”.
a) Plant life: A new white mushroom - always cute.
b) Bird life:
ba) One goldfinch here again today, regularly, attracting the other small birds who seem to be wondering why someone would want to eat evening primrose seeds.
bb) A great tit is trying to get sunflower seeds upside down, but don’t think s/he’s managing, not sure.
bc) 1-2 nuthatches are coming to the bird food, garden and my wife says balcony, hardly seen them from near. Now I’m listening to the birds I see. The nuthatches are excited by the youtube recordings, the goldfinches are too usy with the evening primroses.
bd) The sparrow pair is back, hope for longer.
c) Animal life:
Squirrel got the hazelnuts I put out one by one, did something with them (praps marked for carrying), then brought them into the garden for the winter. I’ll be finding more “whirls” in the grass of my little meadow.
d) Plant, bird & animal life:
Got the guinea pigs some mugwort and tansy, they loved it.
e) Human life:
One last game of table tennis with mate #1 before his hols, with lots of laughter.
f) Environment:
Low sun behind the cherry is lighting up the raindrops.
g) Body: -
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

2023-10-22 Sunday - recovery?: stable, still no further improvement. RR/supp changes?: still wary. LDN?: jumping up to 0.5mg from 20th on - no further improvement.

What … worked / went wrong … today:
Trying a longer walk went wrong, but good to see how strict the 20’ limit is. Couldn’t manage music or service.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark:, 3rd meal 18:00-19:00 :white_check_mark:, 1st meal 8:00-9:00 :white_check_mark:.
Self-treatments: Horse stance :x:, balancing (:white_check_mark:).

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

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR :white_check_mark:, energy, esp. via LDN :white_check_mark:, getting weight back up from 77kg (Oct 22nd) by pulling 1st meal forward again :white_check_mark:.

(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 :+1: for:

  1. Energy up from 10% to 18%: for activities :white_check_mark: - up to the time limit, walking: up from 5’ to 30’ (:x:) - after trying to go over the 20’ limit I needed a long 20’ break lying down despite no TT, listening: up from 3’ to 15’ (:x:) - bit worse again after overdoing it with 15’ yesterday, TT :ping_pong: fine motor skills and available short term energy - no TT, but I think fine, stiffness :white_check_mark: - definitely, shorter recovery times :white_check_mark: - but recovering from the 2x20’ walk took till next day, all constantly :white_check_mark:. But :neutral_face:: still yellow/white face, black eye rims and white lips.
  2. Pain: overall Ache :white_check_mark: - better even during the 2x20’ walk, local: lower back (:x:) - at night, less (:x:) - various at night, hangover :white_check_mark: - no.
  3. Muscles: eyes = vision (:white_check_mark:) - OK-ish, bladder: pee frequency & urge (:white_check_mark:) - OK-ish.
  4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake :white_check_mark: - OK-ish.
  5. :-1: Nothing really since Oct 18th :white_check_mark:, except 20th: hangover 3h.

How to continue: Side effects of 0.25mg gone in 2-3 days, so watching how I go with jumping up to 0.5mg on 20th.

RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? (❌) actively trying to decrease? (✅) - slomo.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. No TT, gardening/moving ➔ 80%/2 ✅, talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌ (worse again after overdoing it). White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅ - 8h46, up 6x (64'), all deep ✅, I guess longer from the evening walk. Left jaw joint area hurting (alone & to touch) at 0:18, but later no more. Tongue 30%, so praps histamine making calming necessary. Lower back irritation increasing, cold wash instead of cold shower was enough to help, also increased from sitting on the sofa to take BP, which is probably increasing the night measurements (to 120), everything else OK ✅/❌, 80%/2 ✅, ➔ getting up: 70%/2 ✅., 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): 8h46, up 6x (64'), all deep ✅, I guess longer from the evening walk. Left jaw joint area hurting (alone & to touch) at 0:18, but later no more. Tongue 30%, so praps histamine making calming necessary. Lower back irritation increasing, cold wash instead of cold shower was enough to help, also increased from sitting on the sofa to take BP, which is probably increasing the night measurements (to 120), everything else OK ✅/❌, 80%/2 ✅, ➔ getting up: 70%/2 ✅.

Sleep 22:00-
22:53 8’ (downstairs)
23:18 6 30’
0:18 slightly overstrung 0:20 121/80 0:21 123/84, left jaw joint area hurting (alone & to touch) 0:24 - NSDR 10’ tongue 30%, so praps histamine
1:47
3:17 3:21 122/74
3:27 3’ cold wash of lower back, growing problem all night esp. from sitting on the sofa to take BP, which is probably increasing the RR.
6:04 4’
-7:50 sinus headache 20% 30’
Sum: 2h+7h50-(8+30+5+4+13+4=)64’ = 9h50-1h04 =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. 1-2 days recovery from complex filling on 17th. Excitement (= strain rather than stress) ✅: Avoided it today, altho cardio tomorrow may be influencing a bit. Wondering if the slight histamine at night came from having walnuts in my mouth a bit, so that test worked 'too well'. 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% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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. Listening 15’ to very selected music improving. 20th LDN 0.5mg.

3) DOCS: Last update Oct 17th: Complex 30' tooth filling. Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. 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. 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% :white_check_mark:, appetite :white_check_mark:, pee pain: 0p1-2 :white_check_mark:, lower back unrest :white_check_mark:. Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND :white_check_mark:, dry mouth (day and) at night at least not hurting/sticky (:x:).

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 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 supp prices cos of a special offer.

Quality of life: 85%

Lessons in self-care:
Trying a longer walk wasn’t a mistake. Very interesting to see how my energy suddenly dropped after 20’ and how fuzzy/drunk I felt when returning, without stiff/Ache, praps a bit heavy.

Reasons to be cheerful:
a) Plant life:
aa) Did lots of plant identifying.
ab) The white mushroom growing, +1 ‘toadstool’ type new = 2.
ac) Only few leaves wilting.
ad) Vine leaves turning a bit red after all.
ae) Adding even more of neighbour’s red vine leaves to my decorations around the house, instead of leaving them in the dirt on the street.
b) Bird life:
ba) Doing too much in the garden and inside and the walk to see much today.
bb) Saw and two nuthatches on our walk. And a lone wild goose at our lake, very tame, but a loose dog suddenly went after it, could be curbed though, thankfully.
bc) A young (short, small) grey heron came flying when we came to the lake and when we went stood where he often stands, aside from the lake.
c) Animal life:
ca) Sort of looking forward to feeding Harley again.
cb) A bit sad to see one of our bank voles lying in the garden, but interesting to see a wasp feeding on it, normally we associate “dirty bottle flies” with that, rather than “clean wasps”, but I spose that’s cos wasps don’t feed on :poop:. I saw the(?) other one between the flower pots shortly before, so I know there’s still at least one. Praps I can find out using the next hazelnuts which of them is the one who went into the bird food box with them.
d) Plant, bird & animal life:
da) Robin found a small earthworm or siilar in front of me.
db) Reminds me I need to leave a few more leaves on the meadow for the earthworms, not just the ones they’ve started to pull down.
e) Human life:
ea) Lovely when resting on a bench to rest my head on my wife’s lap and she stroked my hair.
eb) Sweet that my wife pointed out flowers at the wayside on the way back from the lake to keep me going, it usually gets on her nerves when I point out plants to her.
ec) Wife able to cry & vent & apologize in the evening was good to see, and I coped with that very well too.
f) Environment: Very much enjoying the sun despite rainy periods, easier to do so
g) Body:
ga) At least I managed to get to our local lake and back on foot.
gb) Strange how after the break at the lake I wasn’t stiff or hurting any more, but felt fuzzy, like a bit drunk, that’ll have to do with the LDN, need to watch.
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

2023-10-23 Monday - recovery?: RR/supp changes?: Not enough I agree with my cardio, so back on candesartan at the lowest dose. LDN?: jumping up to 0.5mg from 20th on. Since the effects seem stable I may stay on 0.5mg for a while to see if the candesartan is doing anything good or bad.

What … worked / went wrong … today:
1st meal earlier off to a bad start due to bloods, so no wonder weight Tuesday morning down to 76.1kg
Slight headache and lots of dizziness during gardening Tuesday morning from re-starting the CVD meds.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark:, 3rd meal 18:00-19:00 :x:, but 19:10 or so (:white_check_mark:), 1st meal 8:00-9:00 (:white_check_mark:) - would have, except for bloods without having eaten.
Self-treatments: Horse stance :white_check_mark:, balancing :white_check_mark:.

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

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, RR :white_check_mark:: cardio & then deciding to go back on candesartan, energy, esp. via LDN :white_check_mark:, getting weight back up from 77kg (Oct 22nd) by pulling 1st meal forward again :white_check_mark:: 77.6kg, Tuesday morning without supps etc. 76.1kg.

(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 :+1: for:

  1. Energy up from 10% to 18%: for activities :white_check_mark: - , walking: up from 5’ to 30’ :white_check_mark: - dunno, listening: up from 3’ to 15’ (:white_check_mark:) - deending, TT :ping_pong: fine motor skills and available short term energy, stiffness :white_check_mark: - , shorter recovery times :white_check_mark: - , all constantly :white_check_mark:. But :neutral_face:: still yellow/white face, black eye rims and white lips.
  2. Pain: overall Ache :white_check_mark: - OK-ish, local: lower back :white_check_mark: - 2-3 cold washes helped discomfort at night, less :white_check_mark: - better again, hangover :white_check_mark: - backlash from the walk not from the LDN.
  3. Muscles: eyes = vision (:white_check_mark:) - OK-ish, bladder: pee frequency & urge (:x:) - OK-ish.
  4. Sleep (taking it in the mornings): feel better in breaks (:white_check_mark:), waking up better (:x:) - I never know when it’s time to get up, more awake (:white_check_mark:) - OK-ish.
  5. :-1: Nothing really since Oct 18th :white_check_mark:, except 20th: hangover 3h.

How to continue: Side effects of 0.25mg gone in 2-3 days, so watching how I go with jumping up to 0.5mg on 20th (and CVD meds from 23rd on).

RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, research? ❌ measuring? (✅) actively trying to decrease? (✅) - slomo. Deleting this for a month after today's cardio visit and deciding to take the CVD meds, then measuring again.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. no TT cos mates not there, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅, 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): 8h22, up 5x (52'), all deep. ✅, everything else OK ✅, 80%/2 ✅, ➔ getting up: 70%/2 ✅. (slight headache, maybe BP med.)

Sleep 22:05
23:20 5’
0:25 4’
1:15 30’ fl25’
3:20 10’
5:30 3’
-7:19
Sum: 1h55+7h19-(5+4+30+10+3=)52’ = 9h14-52’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. 1-2 days recovery from complex filling on 17th. Excitement (= strain rather than stress) ✅?: 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% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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. Listening 15’ to very selected music improving. 20th: LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimib 10mg.

3) DOCS: Last update Oct 23rd: Cardio took many bloods like I asked and convinced me to re-start the CVD-meds. Oct 17th: Complex 30' tooth filling. Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. 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. 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% :white_check_mark:, appetite :white_check_mark:, pee pain: 0p1-2 :white_check_mark:, lower back unrest :white_check_mark:. Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND :white_check_mark:, dry mouth (day and) at night at least not hurting/sticky (:x:).

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 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: 85%

Lessons in self-care:
I spose I need to be on the safe side with my CVD, but I hope the meds aren’t too taxing. Like my cardio said I can’t put myself in a golden cage, and there’s too many things curbing me from keeping lipids down (appetite) and blood pressure down (strain).

Reasons to be cheerful:
a) Plant life:
aa) Finally solved 2 (x3) mystery plants I’ve been following for months, now the tool is able to see they’re just early forms of something that’s already growing quite a bit (bellflower / campanula and margerite / leucanthemum).
ab) One or two further blossoms, like viper’s bugloss (Natternkopf).
ac) Going for the tulips, daffodils and “ornamental onion/allium” (Zierlauch) ‘Purple Rain’ (Prince 1984/ cocktail).
b) Bird life:
ba) Before dawn robin singing thrice, later too, regularly. Jackdaws swarming out. Nervous blackbird “police” tut-tutting a cat.
bb) Robin near me while (re-)planting bulbs etc.
c) Animal life:
ca) No one’s eating the mouse, I spose it’s better to put it under the bushes then, maybe next to our animal graves
d) Plant, bird & animal life:
e) Human life: Wife seems pleased she’s back to work to keep her mind off the problems of the world and the health problems of her, me and Harley.
f) Environment: Quite enjoying the weather.
g) Body: -
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

2023-10-24 Tuesday - recovery?: Nope, cos: CVD med side effects? Dreadful! Too quick too many. LDN?: isn’t quite being neutralized, can still walk quick for a short time.

What … worked / went wrong … today:
CVD meds went wrong, LDN worked a bit all the same.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :x: - it took me almost 3h Wednesday morning (indoors cos of better wifi) to order 4 supps online cos the webshops I tried to use didn’t work and I took notes so I don’t do it next time - recovery time OK, 3rd meal 18:00-19:00 :x:, but 19:00 :white_check_mark:, 1st meal 8:00-9:00 :white_check_mark:.
Self-treatments: Horse stance (:x:), balancing :white_check_mark:.

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

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, energy, esp. via LDN (:white_check_mark:), getting weight back up from 77kg (Oct 22nd) :x: (78kg 25th with bedclothes on) by pulling 1st meal forward again :white_check_mark:.

(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 :+1: for:

  1. Energy up from 10% to 18%: for activities (:white_check_mark:) - tough, walking: up from 5’ to 30’ :white_check_mark: - well 5’ brisk at least, listening: up from 3’ to 15’ (:white_check_mark:) - found some stuff, TT :ping_pong: fine motor skills and available short term energy - not sure what I could have managed with this dull head, stiffness :white_check_mark: - still good, shorter recovery times :white_check_mark: - not sure, all constantly :white_check_mark:. But :neutral_face:: still yellow/white face, black eye rims and white lips.
  2. Pain: overall Ache :x: - bad from CVD meds, local: lower back (:x:) - worse, less (:x:) - lots of small ones, hangover :white_check_mark: - nope.
  3. Muscles: eyes = vision (:x:) - nope, bladder: pee frequency & urge (:x:) - nope.
  4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake :white_check_mark: - nope but cos of CVD-meds.
  5. :-1: Nothing really since Oct 18th :white_check_mark:, except 20th: hangover 3h. Bad today cos of the CVD meds.

How to continue: Side effects of 0.25mg gone in 2-3 days, so watching how I go with jumping up to 0.5mg on 20th (and CVD meds from 23rd on). Got to start the CVD meds over low dosing.

RR/BP: CVD side effects? Yes! First nausea, headache and dizziness. Then ache and heaviness, altho nimble enough for stairs and short walk. Some local pains, like 21:30 under right knee.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. No TT mates, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌ I think, music 15' ➔ 80%/3 (✅). White lips 80% (❌). Exhaustibility "85%" (✅&❌) and sleep (✅) - 7h46, up 4x (69') ➔ getting up: 65%/3 ❌, similar before sleep: showering caused moaning & groaning 50%/3-4 ❌ but did help sleep ✅, 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): 7h46, up 4x (69'), all deep, but taking a while after each break to get back to sleep. ✅/❌, everything else OK ✅, 70-85%/2-3 ✅-❌, ➔ getting up: 65%/3 ❌.

Sleep 22:20- after unable to cold shower, moaning & groaning.
23:56 70% 15’ - shower helped increase stint length!
1:32 8’ 75%
2:55 6 40’ ->85%
5:06 6’ dream earnestly worrying about a double booking knowing I could get things like that confused cos I’m sick, but not knowing that I’m too sick to have even one booking.
-7:15
Sum: 1h40+7h15-(15+8+40+6=)69’ = 8h55-1h09 =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. 1-2 days recovery from complex filling on 17th. Excitement (= strain rather than stress) ✅: Avoided most, but the thought of presenting my garden in a garden newsletter was troubling. Then early Wednesday morning the supp ordering was a big strain while I did it, OK after tho. 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% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimib 10mg. 24th: Too much: Re-start necessary.

3) DOCS: Last update Oct 24th/25th: I've put a complaint in about the lax onco doc after no report exactly 6 months today, they'll be asking him to send me my results, despite me having written them a release of confidentiality as they'd asked. Oct 23rd: Cardio took many bloods like I asked (e.g. liver, thyroid) and convinced me to re-start the CVD-meds. Oct 17th: Complex 30' tooth filling. 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 (✅)) - few points to press today, like under right knee:
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 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,

except doing an overly perfect supp order.

Quality of life: 70%, definitely far down from 85%, feeling pretty miserable or having to distract myself a lot.

Lessons in self-care: Distraction was possible.
Reasons to be cheerful:
a) Plant life:
aa) Opened the meadow in 2 further places to put in daffodils and purple rain.
ab) Still got blossoms in the garden of: black nightshade (100s but tiny like veronica on the (fairly big) plants), oxeyes (suneyes) (40), all the zinnia (25), Apple of Peru (20), rose campions (with the lamb’s ear leaves) (30 but getting unseenly), 10 asters, bellflowers (4-5), big petunia (1 old, 1 praps still coming), a few marigolds (2), 3-4 topinambour sunflowers, 1 white mushroom getting bigger.
b) Bird life:
ba) Jackdaws on the evening round is always an enormous pleasure even if it’s only a minute where they’re all together and close over our garden.
bb) Robin visited me close on my dawn visit of the garden. Singing so often during the day now, praps 10x 3-4’ altogether.
bc) Pigeon twins being fed in our cherry today for the first time, but not long.
c) Animal life:
ca) Bank vole loudly eating a hazelnut…
cb) …or was it Redblack Squirrel who’s fetching them to plant them all over the meadow again, found quite a few pretty low down while digging up grass sods. Well no, it takes him 10 seconds to get a nut open I just saw, the bank vole needs minutes.
d) Plant, bird & animal life: -
e) Human life:
Wife helping and encouraging me to keep the CVD meds lower.
f) Environment: For me nice and warm, and rain not bad.
g) Body: At least pretty nimble.
Simplified:
a) Folded over the grass sods and then back, instead of taking it right out like described and like I started, but that spread too much earth on the other grass.
b) 1 supp I keep forgetting 20’ before 3rd meal I can just take the next evening, cos they’re in the try I then still have with me in the garden/cellar.
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

2023-10-25 Wednesday - recovery?: yep better: CVD med side effects? Better again after stopping. LDN?: jumping up to 0.5mg from 20th on: still OK.

What … worked / went wrong … today:
Much better again without the CVD-meds… But time management could’ve been a lot better, so many hamster wheels.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels (:x:) - feeding up Harley 3x50’ today threw me for a loop, 3rd meal 18:00-19:00 :x:, but 19:20 (:white_check_mark:), 1st meal 8:00-9:00 :white_check_mark:.
Self-treatments: Horse stance :white_check_mark:, balancing :white_check_mark:.

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

Today working mainly on … time management (:x:), better self-treatments :white_check_mark:, energy, esp. via LDN :white_check_mark:, getting weight back up from 77kg (Oct 22nd) by pulling 1st meal forward again :white_check_mark:, getting CVD-meds under control.

(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 :+1: for:

  1. Energy up from 10% to 18%: for activities :white_check_mark: - didn’t use it much except for cooking where 25’ was almost too much, walking: up from 5’ to 30’ :white_check_mark: - 10’ went brilliantly, listening: up from 3’ to 15’ (:white_check_mark:) - 4’ of selected tracks in regular intervals is OK, phoning with kid 27’ was too long, TT :ping_pong: fine motor skills and available short term energy - I guess it would have been, stiffness :white_check_mark: - good, shorter recovery times :white_check_mark: - yes, all constantly :white_check_mark:. But :neutral_face:: still yellow/white face, black eye rims and white lips.
  2. Pain: overall Ache :white_check_mark: - better again, local: lower back :white_check_mark: - better again, less :white_check_mark: - better again, hangover :white_check_mark: - none.
  3. Muscles: eyes = vision (:white_check_mark:) - I think so, bladder: pee frequency & urge (:white_check_mark:) - OK today and tonight.
  4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake (:x:) - no, bad Wednesday night after the CVD meds, but that wasn’t the LDN, and Thursday night cos of the 3 local pains, feeling better, but not waking up better or more ‘awake’ at night.
  5. :-1: Nothing really since Oct 18th :white_check_mark:, except 20th: hangover 3h.

How to continue: Side effects of 0.25mg gone in 2-3 days, so watching how I go with jumping up to 0.5mg on 20th (and CVD meds from 23rd on).

RR/BP: CVD side effects?

No meds, no side effects, bit tough Thursday morning, but re-re-starting.

1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. 1 TT mate available tomorrow again at last, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌ - but 27' phone even with distraction and deliberately not always listening was much too much 80%/5 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅, 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): 7h46, up 4x (48'), all deep ✅. Nostril/s10%, 3 local pains: Right thumb tip hurting from dryness, so cream, OK by morning. tendons of the 3rd and 4th toe on left foot hurting like a nerve injury, so arnica/Traumeel cream, OK by morning. Hunchback to right of spine, so hanging & stretches and one longer break for the hunchback/shoulder pain, best was probably recovery position to the other side, seems I've been sleeping mainly on one side, instead of alternating (❌), everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅, but tired as ever.

Sleep 22:30-
23:58 6’ right thumb tip hurting from dryness, so cream. But 3rd toe on left hurting like a nerve injury.
1:15 8’ thumb, toe and now hunchback to right of spine. arnica/Traumeel cream for toe: it’s the tendons of the 3rd and 4th
2:45 30’ thumb, toe, hanging & stretches for the hunchback/shoulder pain, fl25’
5:30 4’ Wife saying my name was a dream. Long stint! >2h
-7:04
Sum: 1h30+7h04-(6+8+30+4=)48’ = 8h34-48’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. 1-2 days recovery from complex filling on 17th. Excitement (= strain rather than stress) ✅: Too much guinea pig feeding time enticed me to do too much online I feel, altho looking back I was outside a lot, too. 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% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimib 10mg.

3) DOCS: Last update Oct 24th/25th: Complaint about the lax onco doc. Stopped CVD meds again for a day, 1mg tomorrow. Oct 23rd: Cardio took many bloods like I asked (e.g. liver, thyroid) and convinced me to re-start the CVD-meds. Oct 17th: Complex 30' tooth filling. 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 (✅)) - walking 10' to a shop for a meal for my wife instead of cycling seemed good for my back as well as my whole body, so I'll try doing that more often now. 3(-4) local pains tonight, seem under control again, but gotta watch and try to prevent all 3 closely:
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - 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 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?

Quality of life: 85%

Lessons in self-care:
Gotta watch out for those dratted hamster wheels. The problem is that feeding Harley is needing me to distract myself, and I’m doing that online, using the better wifi inside the flat. But then continuing after he’s finished. I think I want to concentrate more on him, keep his feeding time down, and then get outdoors fast. Cos wifi is OK in a certain point in the cellar.

Reasons to be cheerful:
a) Plant life:
The white button-type mushroom is growing bigger into a white umbrella-type, other brown umbrella-types are coming up the more it’s raining, what interesting beings.
b) Bird life:
ba) A great woodpecker (that’s “coloured woodpecker” more aptly in German) visited me as well as a robin several times, photos on my other post here: Lymph question - #6 by JayCS. Cos I had to keep still to catch him on film I got cold and had to get a hot water bottle afterwards…
bb) Robin unsuccessfully trying to copy great tits was a good laugh.
bc) BobStar I think it is, with her mutilated neck, is still around, seems OK apart from that, came close, but then I had to move quick cos I could hear the postperson bring my supps.
bd) Robin first thing again, an hour before dawn.
c) Animal life:
ca) Black-red squirrel around another time too.
cb) Wondering whether to remove cobwebs / spiderwebs / spiders, I’ve found out not to remove spiders or their fresh webs, but their old useless untidy dusty “cobwebs” (which actually also means spiderwebs, just people use it more for the old dusty ones), see “simplified”.
d) Plant, bird & animal life:
Puddy cat didn’t get Jerry the bank vole… didn’t get the whole chase on film, but part of it. Wondering whether to intervene or not. With birds I would have… I think now I should have, cos as opposed to birds of prey Tom isn’t eating any of it.
e) Human life:
ea) Wife’s got a lot to do today, but seems happy for it.
eb) Kids on holiday seem OK, but I’m worried they’re overstressing with their kids.
f) Environment:
Great weather today, I was in far too long cos of the ordering and cooking.
g) Body:
ga) It was a great feeling to be able to walk completely normally with nothing hurting, no heaviness, no stiffness! Just that made me beam with pleasure.
gb) The scrambled
Simplified:
a) To eat up my cooked food quicker I should eat it in the mornings too. Whoops, forgot today.
b) So easy to remove the dusty cobwebs with a broom. Before I didn’t know whether to remove them, see “animal life” above.
Foggies: Yesterday my eggs decided they wanted to be poached rather than cooked: One egg slipped out of my hand, made me throw over the pot, so the other 2 fell on to the floor. My clever first reaction was to go to the toilet and whilst there I had a good laugh. Back again I just got the shell halves up, most of the egg white hung on to them, so put them in a pot, and it was sooo delicious, much better than cooked eggs, so I’ll be doing that more often. Ehm, poaching I mean, I’ll try without throwing them on the floor… :roll_eyes: :grin:

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

2023-10-26 Thursday - recovery?: Hmm, very mixed. CVD med side effects? Think not from speck. LDN?: jumping up to 0.5mg from 20th on: OK.

What … worked / went wrong … today:
Started with just a speck of the BP med - no problem. Hamster wheels.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels (:x:), 3rd meal 18:00-19:00 (:x:/:white_check_mark:), 1st meal 8:00-9:00 :white_check_mark:.
Self-treatments: Horse stance :white_check_mark:, balancing :white_check_mark:.

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

Today working mainly on … time management :white_check_mark:, better self-treatments :white_check_mark:, energy, esp. via LDN :white_check_mark:, weight back up from 77kg (Oct 22nd) :white_check_mark:.

(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 :+1: for:

  1. Energy up from 10% to 18%: for activities :white_check_mark: - yep, walking: up from 5’ to 30’ :white_check_mark: - yep, listening: up from 3’ to 15’ (:white_check_mark:) - mate talking 15’ but music only 4’, TT :ping_pong: fine motor skills and available short term energy (:white_check_mark:) - not playing well from seizure-ishness etc., stiffness :white_check_mark: - good, shorter recovery times :white_check_mark: - good, all constantly :white_check_mark:. But :neutral_face:: still yellow/white face, black eye rims and white lips - my wife commented I look as bad as in March :x:.
  2. Pain: overall Ache :white_check_mark: - good, local: lower back :white_check_mark: - good, less :white_check_mark: - better than the night before, hangover :white_check_mark: - none.
  3. Muscles: eyes = vision (:white_check_mark:) - OK-ish, bladder: pee frequency & urge (:x:) - OK-ish.
  4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake (:white_check_mark:) - a bit better tonight.
  5. :-1: Nothing really since Oct 18th :white_check_mark:, except 20th: hangover 3h.

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

CVD side effects?

24th dreadful. 25th not taken. 26th re-re-start with BP speck. (27th 1-2mg)

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 1:5 short games, seizure-ishness / leaves on table / not wanting to touch the ball cos mate had a cold / very relaxed / #5 (moving 10%, talking 20%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/4 ❌, music 5' ➔ 70%/3 ❌. White lips 90% ❌. Exhaustibility "82%" ✅ - did a lot of housework, and sleep ✅ - 7h44, up 5x (46'), almost all deep, but NSDR helped after seeing troubling work mails. This may again have been too short, maybe not. 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): 7h44, up 5x (46'), almost all deep, but NSDR helped after seeing troubling work mails. ✅, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:15- 23:25 5’ 0:35 12’ 1:58 5’ 2:57 4’ 4:37 9’ belly ache nausea, I think that was 20’ or another break, laptop was bust. NSDR cos I’d seen difficult work mails, which I didn’t need to reply to, but just looking. -6:45 Sum: 1h45+6h45-(5+12+5+4+20=)46’ = 8h30-46’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: A phone call from GP#2' office. Work mails at night: no no no!, don't look at mails at night, why can't I stick to that? I should close those tabs at 19:00! Laptop black screen is a bit worrying, I should backup daily now. The severe shower discomfort was only after the 3 CVD meds, now I'm back to normal, just Friday morning I'd sat cold a bit, so needed to alternate shower, which is then normal. 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% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimib 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. Oct 24th: Complaint about lax onco doc. Oct 23rd: Cardio took many bloods like I asked (e.g. liver, thyroid) and convinced me to re-start the CVD-meds. Oct 17th: Complex 30' tooth filling. 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 (✅)) After seizure-ishness 2x Thursday I got a small focal seizure at 10:00 on 27th cycling from getting guinea pig grass & herbs when I saw someone who reminded me of an ex-flat-mate (when seizures come they are often set off by such a memory jolt a bit like a déjà vu. Right thumb still needs creaming, back better since sleeping stretched to alternate sides, no more nerve-type problem with left toes, just the slightly inflamed right big toe nail needs treating again.:
1) GI, pee, local pains, weather, dry mouth well under control: Details...

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

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - Oct (26th-)27th, 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) 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? -

Quality of life: 85%

Lessons in self-care:
With all the help I’m giving Harley, I still need to distance myself in case we can’t keep him going and he gives up. I’m emotionally no longer really in a good shape.
Reasons to be cheerful:
a) Plant life:
aa) More of the 2 mushroom types, and a 3rd in the balcony containers, about 10 in varying sizes, looks cute.
ab) Groomed ‘bad’ fungi off of rose, ivy and oleander (big brown patches I can’t otherwise identify), at least fun getting it done, but painful seeing the plants ‘hurt’
ac) All 3 mums on the balcony are budding, that’s gonna be quite a show.
b) Bird life:
ba) Loudly chattery solo magpie is in our backyards and then my garden today, talking to himself all day… tried to make contact. I think s/he needs a psychologist.
bb) Robin starting to sing at least 1.5h before dawn and singing a lot.
c) Animal life:
ca) Pretty brown housed snail in the left food wall container yesterday evening.
cb) The other day Harley just laid down sideways to sleep whilst I was trying to feed him.
cc) Still no one big eating the murdered bank vole up, but I’m not help out either! :rofl:
d) Plant, bird & animal life: Finding out and getting more and more herbs in garden, on balcony and nearby which guinea pigs can eat. Maybe that’ll inspire me to use them myself, when eating together with Harley.
e) Human life: Wife very happy I tidied lots of (her) stuff up that had been troubling her a lot.
f) Environment: -
g) Body: -
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

2023-10-27 Friday - recovery?: same. CVD med side effects? maybe slightly more. LDN?: jumping up to 0.5mg from 20th on. Same.

What … worked / went wrong … today:
Started with just a speck of the BP med - no problem, 1-2mg slight problem.
Still some hamster wheels, but jumped out of many more.
So long still in the cold I risked an inkling of getting a cold. Shouldn’t! And inside in my room without a hoodie on is too cold too!
Gargling with calendula essence with high % of alcohol in it is sposed to make my mouth dry I’d read, let’s see, and see if I can counteract that with my new saliva-suck trick to keep it moist.
Bad start again after 2mg BP med Saturday morning.
But now keeping warmer.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels (:white_check_mark:) - closed all mail and forum tabs (except this one) and refrained from looking into my health insurance account to confirm whether they’d refused to pay any of my hospital bill or just some of it, 3rd meal 18:00-19:00 - almost managed, but wife got caught up and then so did I (:white_check_mark:).
Self-treatments: Horse stance :white_check_mark:, balancing :white_check_mark:, :x:.

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

Today working mainly on … time management (:white_check_mark:), energy, esp. via LDN :white_check_mark:.

(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 :+1: for:

  1. Energy up from 10% to 18%: for activities :white_check_mark: - cutting grass for the piggies was a strain but running 10m in the evening was OK, walking: up from 5’ to 30’ :white_check_mark: - brisk 15’ walk went fine, listening: up from 3’ to 15’ (:white_check_mark:) - didn’t try, no TT, stiffness :white_check_mark: - good, shorter recovery times :white_check_mark: - spose so, all constantly :white_check_mark:. But :neutral_face:: still yellow/white face, black eye rims and white lips…:x:
  2. Pain: overall Ache :white_check_mark: - hardly as not doing much, local: lower back :white_check_mark: - tried various ways of reducing contact like even when doing back exercises, less (:white_check_mark:) - well 1-2, hangover :white_check_mark: - nope.
  3. Muscles: eyes = vision (:x:) - often strained, bladder: pee frequency & urge (:x:) - not particularly good.
  4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake (:white_check_mark:) - a bit better today.
  5. :-1: Nothing really since Oct 18th :white_check_mark:, 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

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 (too wet to do much) ➔ 80%/3 (✅), talking (didn't much) 15' ➔ 80%/3 ❌, music 5' (didn't much - what did I do today? O.o - see Reasons to be cheerful) ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "82%" ✅ and sleep ✅ - 6h52, up 3x (74'), well awake when getting up, 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): 6h52, up 3x (74'), all deep. ✅, Eyes still tired, but I could get up without the least stiffness (or was that all night?) and it felt sort of like enough sleep, altho I had too long sleep breaks. Still slightly sore throat, which shows that I haven't usually had one any more. Mouth not dryer than without caledula essence ✅, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:40- 23:50 35’ (fl12’ 6:25’) 2:05 24’ fl20’ 4:30 15’ fl10’
-6:46 Sum: 6h46+1h20-(35+24+15=)74’ = 8h06-1h14 =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Dunno. 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% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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. Wife rethinks further away might be OK, but then says even by car will be a 45' trip, and I add: plus 30' to get to the appt., plus waiting.... 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% :white_check_mark:, appetite :white_check_mark:, pee pain: 0p1-2 :white_check_mark:, lower back unrest :white_check_mark:. Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND :white_check_mark:, dry mouth (day and) at night at least not hurting/sticky (:x:).

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?

Gargling with calendula essence with 40% alcohol to stop sore throat / cold did not increase my dry mouth much at all, and just licking all of my mouth inside helped.

Quality of life: 85%

Lessons in self-care:
aa) Taking no more risks from Saturday morning on to get a cold. Zero tolerance in that area too. A slight feeling of a too cold torso and I put more on. No more sitting in a draught or with windows open nearby.
ab) Hurting after taking 2mg BP med, feeding guinea pig, talking with wife, so taking time off with identifying plants, my favourite distraction.
Reasons to be cheerful:
a) Plant life:
aa) “Jaws”



So - who’s been eating from my mushroom? Goldilocks? Alice?
b) Bird life:
ba) Cute robin getting oat flakes I’d put out.
bb) Wife brought me on to BobStar and Duey being in moult to get winter plumage.
bc) 2 Blackbirds in garden, and at least one on the balcony for the first time in ages.
c) Animal life:
ca) 2 red black squirrels, antics all round - jumping on the sunflower and taking seeds out of the lower heads!
d) Plant, bird & animal life:
e) Human life:
ea) Fun to show my wife some of today’s photos, like “Jaws”.
f) Environment:
g) Body: 10m sprint in the evening was fun, no backlash.
Simplified: To find out how many 1L of almond milk I’m drinking I’ve been ordering them around the cellar staircase in groups of 4, then 3 (looks like an Andy Warhol pop art sculpture). Cos now I’ve realized I’m not drinking 4L/d at the moment at all, it’s slightly under 3. 1L remained last week, so 20L/wk. (Be continuing that another 2 weeks cos it’s so simple to do and see now.)
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

2023-10-28 Saturday - recovery?: No, cos: CVD med side effects? Easily knackered again from just 2mg, half the lowest dose. LDN?: jumping up to 0.5mg from 20th on: Still keeping my movements fluid.

What … worked / went wrong … today:
2mg BP med - knackered. Or was it too little sleep? No hamster wheels.

Habit encouragement… :
Time (= stress) management: Blog earlier :white_check_mark:, forums less :white_check_mark:, jump off hamster wheels :white_check_mark: - except identifying plants is getting me hooked, 3rd meal 18:00-19:00 :x:, bit later (:white_check_mark:).
Self-treatments: Horse stance :white_check_mark::x:, balancing :white_check_mark::x:.

How was I today?: Feeling 75-85%-ish (:white_check_mark:), energy today (:white_check_mark:, relatively), sleep Friday night :white_check_mark:, sleep Saturday night :white_check_mark:. Don’t feel like paperwork or work at all, just want to focus on the garden.

Today working mainly on: time management :white_check_mark:, energy, esp. via LDN (:white_check_mark:).

(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 :+1: for:

  1. Energy up from 10% to 18% to 12% today: for activities :white_check_mark: - down from bp med, walking: up from 5’ to 30’ to 15’ :white_check_mark: - bp med? (Sunday better tho), listening: up from 3’ to 15’ (:white_check_mark:) - , no TT - not sure, stiffness :white_check_mark: - good, shorter recovery times :white_check_mark: - OK, all constantly :white_check_mark:. But :neutral_face:: still yellow/white face, black eye rims and white lips.
  2. Pain: overall Ache :x: - pretty bad, local: lower back :white_check_mark: - good, less :white_check_mark: - good, hangover :white_check_mark: - good.
  3. Muscles: eyes = vision (:white_check_mark:) - OK-ish, bladder: pee frequency & urge (:x:) - slightly better but not good.
  4. Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake (:x:) - .
  5. :-1: Nothing really since Oct 18th :white_check_mark:, 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) 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' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "85%" (❌) and sleep ✅ - 8h47, up 3x (63'), all deep and feeling better for it being long, 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, 5h30 medium, 30' quick
SLEEP (click for details): 8h47, up 3x (63'), all deep. Feeling awake. ✅, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.

Sleep 22:50- 23:55 20’ fl15’ 1:15 30’ fl25’ “3”:26 27’ fl 23’ “7”:00 4’ feeling good, but better try more. Sum: 1h50+8h00-(15+25+23=)63’ = 9h50-63’ =

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅?: Only plant interest getting a bit addicted, can't remember anything else. 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% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. 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% :white_check_mark:, appetite :white_check_mark:, pee pain: 0p1-2 :white_check_mark:, lower back unrest :white_check_mark:. Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND :white_check_mark:, dry mouth (day and) at night at least not hurting/sticky (:x:).

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?

a) Someone thought that olive oil increases DAO 500x. Reading the study I found 5-fold (“500%”), but only in a rat experiment with high doses of infused pure triolein.

b) Strategies for the Management of Spike Protein-Related Pathology - PubMed
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10222799/
Very concise and loads of small but important pointers, incl. questions I’ve had & heard, I’ll summarize down below.

Pubmed links are often useful too, cos usually down below newer articles citing this can put an article into context. In this case there is none citing it, which is probably mainly cos it’s so new. However reading the full article as well shows only a preliminary picture. Although 360 references given, so lots of work gone into it. But the actual article is very short. It’s pointing out what we know and don’t and which clinical trials are taking place and that results “should” be quickly shared with the general public. The authors are people that try to integrate mainstream and alternative medicine, e.g. Plothe is an MD, an osteopath and homeopath.

Summary of 3.2 Clinical Observations: There’s no official definition for “post vac”. There’s significant overlap. Biggest difference is neurological symptoms (esp. small fiber neuropathy) in post vac. Only when someone’s died could we prove by examining if someone had post CoV, not post vac. - Clinical trials are too short as yet to know how much people have post vac. In one survey 1% needed medical attention directly after a vacc. A big study reported adverse reactions in 8.5% from Pfizer and 7.9% of Moderna. Increased risk: genetics, higher amount of mRNA in the vacc, vacc type, the more vaccs the worse, more females, co-morbidities like auto-immune disorders.

Summary of 4.6 Potential Therapeutics (trials) (for Long CoV) = Meds: Ivermectin, Corticosteroids, Antihistamines, Aspirin, Low Dose Naltrexone (LDN), Colchicine, Metformin. Best result: Significant improvement from LDN (this study from 2022). Supps: Vit. D, vit. C, vit. K2, NAC. (Results so far are often only from being used on the CoV infection itself.)

Quality of life: 85%

Lessons in self-care: Overdoing it on the other hand, addictively identifying plants on the other…

Reasons to be cheerful:
a) Plant & fungi life:
aa) Found new fresh blossoms of a new purple flower I don’t think I know
ab) Found further blossoms coming up, “tickseed”, better in German “girl’s eye” (Mädchenauge, coreopsis)
ac) The “jaws” mushroom now has a second layer under it, a 3rd further mushroom of that kind coming up.
ad) On the balcony there’s one trough with almost 20 small brown mushrooms.
ae) There’s still at least one more pfetty white blossom of mountain sandwort (arenaria montana) in the balcony trough holding on till (at least) the mums open.
b) Bird life:
ba) Blackbird singing softly.
bb) I’m using deutsche-vogelstimmen.de to learn the song, calls and warning calls of each bird that has been registered in our quarter by our local ornithologist. But one I taped the other day I can’t find, it’s pretty distinctive and I’m thinking it’s closest to a redstart and a little bit like a wren, but those both don’t end the same as this one which has 3 times the same sound.
bc) New pigeon on the balcony strutted around nervously whilst BobStar-in-Moult was feeding away and not chasing New away, wife thinks it’s a subadult, and s/he’s not in moult, so I think it could be BobStar’s kid. Very striking neck pattern indeed, a pretty long perpendicular line type triangle on one side, pretty different on the other. Sitting opposite… and with a squirrel meeting, see d). Then came back over when BobStar was gone, gained more trust and ate for 10’, so I could film - a she I’m pretty sure.
c) Animal life:
ca) Loads of slugs, the biggest a Spanish/Iberian slug, so probably the rest too. Hope they don’t all make it… I hadn’t seen any at all lately tho. Just slime in on the old carpet I put down in our shed.
d) Plant, bird & animal life:
da) Squirrel cllmbing up old vine branches wanted to go up, but the new pigeon sitting directly above was again very nervous, as if s/h’ed never met a squirrel before, so Squirrel went somewhere else.
e) Human life:
eb) Fun finding out the various forms/names of fried egg (sunny side up, over easy, (over hard). Cos I’d done mine over easy and wanted to know what that’s called, couldn’t find a German name for it, my wife called it “a mess”, and said I’d used too much oils, but I’d used far less than she said (mix of a bit of olive oil, shea butter and coconut oil).
ec) Fun being out with my wife, even if only for a short time. Love her.
f) Environment:
fa) Bit of sun nice. Then beeaauutiful cos really strong, warming, luckily we used it for a cycle-walk
g) Body:
ga) Better on cycle-walk when I got off bike and walked a bit. Strange condition now with the LDN and the bp med: I can move fluently, but I’m shattered at the same time.
gb) Had a look around town for a few minutes, few paintings (one big one of a boat in wild sea) and other art.
gc) Enjoyed the architecture, like looking up at a house and seeing a gable I hadn’t seen before.
gd) Cycle-walk Sunday morning went very well, I could push the bike all the time, altho my wife wanted me to take it with me just in case.
Simplified:
a)
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