2023-11-23 Thursday - recovery?: only afternoon. CVD med side effects?: Pretty severe. LDN? (Nov 19th on 1x1.5mg): cut thru in the end.
What … worked / went wrong … today:
Morning mucked up from atorvastatin, afternoon recovered and back to the new normal.
Slightly nauseous again, not sure what to put that down to.
Habit encouragement: time management (✅), self-treatments ✅.
Time (= stress) management: Blog earlier (
), forums less , jump off hamster wheels , 3rd meal 18:00-19:00 
Self-treatments: Horse stance , balancing .
How was I today?: Feeling 85-90%-ish (), energy today (, relatively), sleep Wednesday night , sleep Thursday night .
Mainly working on time management (), energy with LDN , keeping spirits up .
(V)LDN: Nov 19th- 1x1.5, Nov 17th-18th 2x0.5, 16th (1+1)x0.5, Nov 10th (2+1)x0.5, 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ (22%) & heaviness ✅ incl. for walking: Afternoon walk 35-40' extremely fast with no problems after. ✅✅, fine motor skills ✅, stiffness ✅ (10%), recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌ or listening ❌. No more side effects ✅ (only from the atorvastatin). Click for details on dosage and symptoms:
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5. 16th (1+1), 17th 2x0.5, 19th 1x1.5.
VLDN 
for:
=1) Energy up from 10% to 22%: for activities , walking: up from 5’ to 30’ , listening: difficult (), TT 
fine motor skills and available short term energy , stiffness , shorter recovery times , all constantly . But 
: still yellow/white face, black eye rims and white lips.
2) Pain: overall Ache - except at night cos of shorter sleep breaks, local: lower back , less , hangover .
3) Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
4) Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake ().
5) 
Nothing really since Oct 18th , except 20th: hangover 3h.
Additives: capsules with TiO2 (HPMC with SiO2).
CVD med effects?: About an hour or more when I increase too much, first from the BP med, then the lipid med. Nov 23rd: Atorvastastin 1mg after yesterdays 2x1mg. But is it that or the LDN in the early mornings first inhibiting my opioid receptors? Friday-Sunday 0, let's see. Nov 13th started atorvastatin for lipids 1mg/d. 6th: reached 4mg/d of BP. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.
24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects. After that sometimes nauseous sinus headache in the morning if I take a bit too much, but resolves quick, so trying to keep the specks higher in the daytime. I’ve reached the 4mg/d since Nov 6th.
[details=“1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (), hardly post postural ache . Stiffness . TT 2:1 pain from the 1st game on, had to stop after 3, not cos people were playing next to us.
(moving 20%, talking 20%, counting 0%) ➔ 80%/5 (), gardening/moving ➔ 80%/3 (), talking 15’ ➔ 80%/3 (), music 5’ ➔ 70%/4 . White lips 80% (). Exhaustibility “78%” and sleep - 9h10, up 5x (50’), no “PPA”, pain at night back down to 2 (), click for details:”]
[details=“EXHAUSTIBILITY today: “78%”. Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today’s ENERGY profile moderately slow, with “6h rest”, 0h very slow, 3h slow, 6h medium, 1h quick"]
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SLEEP (click for details): 9h10, up 5x (50'), all deep ✅, everything else OK ✅, 80%/3 (✅), ➔ getting up: 80%/3 (✅).
Sleep 22:30-8:30 3x 30’ 1x. Sum: 1h30+8h30-(50)’ = 10h-50’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: Insurance bills getting. 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): Stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept: BLADDER EXAM, COV-TYPE, WORK, ABDOMEN, MUSIC PAINFUL, HARLEY, WIFE: 4th bladder exam 3 days of ‘screaming’ while peeing, recurred around 18th, UTI and recurred 2x3d, 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. Harley losing tooth, appetite and weight was the main trigger from September on. In Sept. the big work project, and wife’s mood (better in Oct).
(11) Oct: BETTER FROM LDN, WORSE FROM CVD MEDS: 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, 24th dreadful, 26th re-started with BP specks, increasing to 4mg, with only slight side effects.
Nov: From LDN stable energy 18->22% and stiffness down to 10%. 15th starting to get slightly above 4mg BP without side effects, starting atorvastatin specks dulled, proprioception, fatigue.
3) DOCS: Nov 16th: Report from onco doc came, claiming it was me that'd stopped coming, and that my lymph nodes, liver and spleen sizes would need to be checked next, but no cancer is detectable to date, he put the eosinophilia (at the time) down to fibromyalgia or (MCAS) intolerances. Nov 8th: Urologist: IPP/Peyronie - but I'm still looking for natural alternatives, and I believe the cystoscopy injured me, whether I have a genetic predisposition or not. Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Aug 7th: Very painful uro bladder exam and bloods was followed on 9th by a vertigo attack - connected? Click for details.
Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.
[details=“4) UNDER CONTROL (attention necessary ()) - DAO before 200g baked beans prevented a histaminey “burnt” tongue! - Been meaning to test that for ages and should check that with all high histamine foods now. 1 focal seizure on around the 20th:”]
1) GI, pee, local pains, weather, dry mouth well under control: Details...
except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().
2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 20th(?) (1,) Nov 13th (1), 5th (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last focal seizures: Nov 20th (1) I think it was, after food fell off my spoon into a bowl… Nov 13th 20:30 slight cos of wind noise. 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.
SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW From Nov 19th: LDN 1.5mg mornings. Nov 4th on: nattokinase 1x0.1g, from 15th 2x0.1g. 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. From Nov 4th on: nattokinase 1x0.1g, from 15th 2x0.1g. Oct 16th: Silymarin 2x.5g now, LDN Oct 1st- 0.25mg, 9th- 1.25mg, 16th- 0.25mg, 20th 0.5mg, Nov 1st- (1+1)x0.5mg, 10th- 2x0.5 and 1x0.5mg, 17th- 2x0.5, 19th- 1x1.5mg. 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:
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‘Research’ today
Read Masterjohn again on B2 saying: only a few mg of it are necessary and not the 100mg often in supps (I’m now taking 3x600mg/d again) and can mess with the other B-vitamins, which explains my high B6 and B7. This is making me think it important to stop it again after all, as it’s in the lower normal range.
Quality of life: 90%
Lessons in self-care:
Reasons to be cheerful: Skipping this today, too much concentration on the health bills.
Fibro/rheum clinic Sept 2020
Someone asked me about the fibro/rheum clinic I was in, back in Sept20, shortly before I started this blog, and I listed all the treatments I can remember, which I don’t seem to have put on this blog, so here goes:
- I’d recommend all clinics and docs to tout as much multi-modal as possible anyway, i.e. at least point to all 5 areas from this list (the “contents” of my big list - see below):*
- A. MIND (1. pacing, 2. understanding, 3. therapy, 4. relaxation, 5. sleep, 6. fog help)*
- B. PHYSICAL (1. Exercise, 2. Manual, 3. Meridians 4. Breath 5. Cold/Heat, 6. Electro, 7. Water, 8. Devices, 9. Positioning, 10. Sports)*
- C. BIOLOGICAL (1. Diets, 2. essential oils, 3. oxygen/ozone)*
- D. ENVIRONMENTAL (1. Inside: air, bed, heating, light, noise; 2. outside: weather, aids)*
- E. BIOCHEMICAL (1. Meds, 2. supps)*
Multi-modal here in these clinics like that one means
- 2 weeks inpatient,*
- mainly “B”: almost 20! types of physical/manual therapy, exercises) and*
- some of “A”: progressive muscle relaxation most days, 4 general pain talks, but too general, 1 psychologist session - 2 might have been better. More about A1+2+5+6 I’d’ve welcomed.*
- The reason I chose that clinic from 3 was they had a cold chamber for whole body cryotherapy, and I knew that helped me (their’s wasn’t cold enough for me though).*
- I think clear pointers to elimination diets, oxygen, environmental triggers and meds/supps would have been enough.*
- I’d’ve welcomed more patient interaction, but Covid was rampant. Disappointed after this didn’t happen I looked for online support and information and filled the gaps more and more, esp. on the forums. As German health forums are scarce and pretty useless, I couldn’t have expected the docs/therapists to point to them, but I think they should do so worldwide. (I used international health mailing lists in the 90s, a time where you got severely bashed on forums as they were badly moderated. Thankfully that’s changed.)*
The other two clinics were a pain clinic and a “manual therapy” clinic - these also would have done this kind of “multi-modal” pain treatment, e.g. the orthopedist who talked with me for going to the pain clinic was also an osteopath. None of them dealt in meds.
Tai chi, aqua jogging & swimming, Nordic walking, light “dancing”(?), gym with a the whole variety of gadgets and realistic training targets, local cold air treatment, whole body cryotherapy, hand/wrist exercises, hand bathing in hot or cold grains, deep tissue massage, osteopathy, electrotherapy, various kinds of normal physiotherapy. The progressive muscle relaxation was in a beautiful room with flowing water and soft colours and music and electric reclining armchairs, it was good just to be in there to relax on my own.
No, I’d say everyone there got something out of about everything, even if they couldn’t praps implement it at the time. Most difficulty I had with the slow arm movements of tai chi, I had to stop and sit down after a few minutes, but everyone else was fine with it. And their normal “physiotherapy” exercises. But I think part of the problem with those was my own ambitiousness, not yet able to adapt to having the same underlying strength but not being able to use it without a severe backlash, i.e. pacing, low & slow… I bet they could have told me till they were blue in the face to do “more repetitions with less strain”. I think they weren’t that normal. Now I’ve learnt when and how to move less, and am learning to start very low with substances, too…
But… the whole 2 week inpatient stay flared me severely for many weeks, cos of bed/mattress (meaning I slept on my own mat on the floor), snoring/apnea bed neighbours) meaning I had to often flee to the common room open to the corridor), the social involvement, and the food caused problems, altho they were very amenable for my strict diet (but offered unaccustomed things for others they couldn’t, too many changes and stuff like celery I thought I might tolerate, but didn’t realize I didn’t)… So a valuable experience which showed me many things, but more like that I was already on a good path already (which my docs & therapists also thought beforehand).
[details=“Development: Look before Aug 22nd for more details. Click for links to “biggest successes” (after June 18th 2023), “summary” (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting”]
Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023
- 8 weeks after jab#3: stabilized
- 1st Jab-sfx-summary, last edit: Feb 7th.
- My food 2023.
- My blog references, e.g. abbreviations, supp chart/overview
- My “How to symptom track & trigger hunt”
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