2023-11-13 Monday - recovery?: Stable. CVD med side effects? Stably none, so can start with low dosed statin. LDN? (Nov 10th on (2+1)x0.5mg): Stable at 22% energy.
What … worked / went wrong … today:
Weight 76.1kg, yesterday 77.4kg, so hasn’t decreased further, just meandering lower level.
Habit encouragement: time management (✅), self-treatments ✅.
Time (= stress) management: Blog earlier 
, forums less , jump off hamster wheels , 3rd meal 18:00-19:00 
.
Self-treatments: Horse stance , balancing .
How was I today?: Feeling 85-95%-ish (), energy today (, relatively), sleep Sunday night , sleep Monday night .
Mainly working on time management (), energy with LDN , keeping spirits up .
(V)LDN: Nov 10th (2+1)x0.5, 1st 2x0.5mg (starting with Oct 1st ~0.07mg). It's improved mainly energy ✅ (22%) & heaviness ✅ incl. for walking ✅, fine motor skills ✅, stiffness ✅, recovery time ✅, Ache ✅, pains ✅, but not my paleness ❌. No more side effects ✅. Click for details on dosage and symptoms:
Dosage: Oct 1st ~0.07mg evenings, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg. 16th -19th 10:00 0.25mg. 20th-31st 0.5mg, 1st- 2x0.5mg, 10th (2+1)x0.5.
VLDN 
for:
- Energy up from 10% to 22%: for activities , walking: up from 5’ to 30’ , listening: up from 3’ to 15’ (), TT
fine motor skills and available short term energy , stiffness , shorter recovery times , all constantly . But 
: still yellow/white face, black eye rims and white lips. - Pain: overall Ache , local: lower back , less , hangover .
- Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - OK-ish.
- Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake ().
Nothing really since Oct 18th , except 20th: hangover 3h.
CVD med effects?: 6th: reached 4mg/d. Spreading pulverized BP specks increasingly over the day since Oct 31st is working, whilst the small starting dose from 24th on was dreadful, and even amounts of 1-2.5 mg once a day took all LDN energy.
24th dreadful. 25th not taken. Re-start with BP speck 26th. 1-2mg early 27th seemed not particularly good, but might’ve been too little sleep. 28th Worse after less sleep. 29th Better after longer sleep. 30th Worse after 2.5mg (or >2 at least) despite sleeping almost 8h. 31st: Spreading the “candy” (candesartan) over the day in ~0.5mg specks worked, I think I felt it a little at ~14:00 once tho. 1st: spreading is working again, again felt it a little at ~12:00. 2nd: and again, no effects. After that sometimes nauseous sinus headache in the morning if I take a bit too much, but resolves quick, so trying to keep the specks higher in the daytime. I’ve reached the 4mg/d since Nov 6th.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I use all of the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 (moving 20%, talking 20%, counting 0%) ➔ 80%/2-3 (✅), gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3 ❌, music 5' ➔ 70%/4 ❌. White lips 80% (❌). Exhaustibility "78%" ✅ and sleep ✅ - 8h35, up 5x (25'), all deep, click for details:
EXHAUSTIBILITY today: “78%". Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "6h rest", 0h very slow, 3h slow, 6h medium, 1h quick
SLEEP (click for details): 8h35, up 5x (25'), all deep. ✅, everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.
Sleep 22:30-7:30 5x5=25’ Sum: 1h30+7h30-(25)’ = 9h-25’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= strain rather than stress) ✅: None I can remember. Click for list, incl. Sept summary added Oct 2nd...."
(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine (T4) pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Summary (Sep 12th): These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% , tongue burning: 10% day, 20% night . Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being.
Oct: 1st VLDN 0.07mg, 9th 0.125mg, 16th 0.25mg. 17th: Complex filling - only 1-2 days recovery. Listening 15’ to very selected music improving. 20th LDN 0.5mg, 23rd: back to candesartan 4mg, atorvatastin 20mg, ezetimibe 10mg.
3) DOCS: Nov 8th: Urologist: IPP/Peyronie - but I'm still looking for natural alternatives, and I believe the cystoscopy injured me, whether I have a genetic predisposition or not. Nov 4th/5th: See 5th for bloods of Oct 23rd: need to keep up most supps plus try to re-start all 3 CVD meds. Oct 30th: Onco appt scheduled for Jan 8th - distant time, but place near enough. Last update Oct 24th: Complaint about the lax onco doc after exactly 6 months. Oct 23rd: Cardio: bloods, and convinced me to re-start the CVD-meds. Oct 11th: GP#2's office checked back about onco, GI & bloods. Sep27th: Wife's GP will get me a cancer appt., ask about GI. Click for details.
Oct 21st (see 20th) pee frequency / urine retention med: I used to drink only 1.5L/d before fibro, plus lots of yogurt and raw veggies. Whist I’m not sure when that changed, 80/d supp capsules and my increased thirst and dryness are the reasons for drinking 3L/d and so for peeing more, so no sense in taking meds to artificially reduce my peeing. (Pulling my 3rd meal supps and the 1L almond milk forwards to 19:00 didn’t help for sleep breaks, and thirst and headache at night).
Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV being the reasons I guess. Feedback from onco appt. Apr 24th is STILL pending.
4) UNDER CONTROL ✅ (attention necessary (✅)) - need to watch, prevent and treat back, focal seizure at 20:30, altho GABA normal, so is this new frequency from LDN or candesartan or nattokinase? No, not according to research, but yet don't know what else it's from:
1) GI, pee, local pains, weather, dry mouth well under control: Details...
except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().
2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: 1x/m - focal seizures Nov 13th (1), 5th (1) (only 2x GABA at night!). Oct (26th-)27th (1). Oct 18th/19th (3). Sep 19th? (1). Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: 1-3x/m - Oct 21st. Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last focal seizures: Nov 13th 20:30 cos of wind noise. Nov 5th very slightly seizure-ish at TT, then 20:50 (cos only 2x GABA at night, not compensated). Oct (26th-)27th 10:00 (seemingly seeing an ex-flat mate), seizure-ish 2x 26th. Oct 18th 17:50 (going on to busy street) & 20:15 (emotional music that could reach me). 19th: 11:00 table tennis. Sep 19th?? Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Oct 21st: sweet potato. Sep 30th: sweet potato. (Sep 25th: Sweet potato went down after 20-25’.) Sep 16th seemed scary. Sep 11th: peach. Aug 31st supp. Aug 26th: supps with buttermilk, Aug 8th: carrot, then chocolate. July 23rd distracted. 16th distracted. (June 6th narrowly avoided.) May 31st carrot, distracted. Apr 4th: Carrot. Mar 26th supps. Mar 23rd: Parsnip. Mar 13th & Feb 26th: muesli after supps. Feb 20th: massager helped. Feb 5th: supps. Jan 19th: massager sometimes. Jan 17th: B supps and back to bed is OK atm. Jan 8th: supps. Jan 5th-7th small. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th.
SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Oct 16th: Silymarin 2x.5g now, LDN! - starting 0.07mg 20:00, 9th on 10:00: 1.25mg, 16th on 10:00: LDN 0.25mg, 20th 10:00: 0.5mg, Nov 1st on 2x0.5mg, 10:00 and 15:00. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd.
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept.
Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. 16th: Silymarin 2x.5g now, LDN 0.25mg. Sep 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:
‘Research’ today
a) Last Friday Cort Johnson blogged “How to Decide Which Treatments To Try for ME/CFS and Fibromyalgia: The Ric Arseneau Talk” on healthrising - an essential question.
It summarizes a 1h28 talk on youtube called “Medication and Treatment Decisions – Navigating Online (mis)Information & Evaluating the Evidence”
Summarizing Cort Johnson’s summary:
What it starts on is easy: Stuff that’s cheap and has good evidence to help.
But then it gets really specific and qualified about certain newer treatments, YES first (#1-#3), then Perhaps (4-7), then NO (8-10):
- L D N - YES, cheap, lots of trials going on for FM, ME/CFS and Long-Covid (plus a new study has shown that naltrexone is stable in liquid which means it’s OK after all to titrate it after dissolving it, if you can get naltrexone prescribed).
- aripiprazole/Abilify for ME/CFS -YES: fog & fatigue & PEM, cheap, little risk.
- Amygdala Retraining Program – (Gupta) YES, neuromodulation, low cost.
- Metformin - a new one for us, YES if you get CoV, but unsure if more.
- Guanfacine (typically for ADHD) - YES for fog & tension if you can afford it.
- Micronized PEA (palmitoylethanomide) – YES, but not cheap.
- Repetitive transcranial magnetic stimulation (rTMS) – Perhaps.
- Oxaloacetate – NO, safe and possibly effective, but very expensive.
- CT38 - not yet.
- Rituximab for ME/CFS has very probably failed - NO.
There’s also a (dropbox) link to details and his assessment if 40 substances incl. the above, but also amitriptyline, cymbalta, gabapentin, Lyrica…
Ric Arseneau is an ME/CFS/FM/Long-CoV/ chronic disease expert, was a complex chronic disease clinic director and much more.
b) Consumlab’s list of fibro supps:
consumerlab has a short list of supps with evidence to work. I don’t think it’s a good list, cos they always only cite one or very few, usually bad, studies - there are better studies around. But at least it’s an unsuspicious source, and there’s nothing I didn’t/wouldn’t try:
- vitamin D - if it’s low,
- 5-HTP - possibly,
- creatine - slightly for muscle strength,
- CoQ10 - fibro generally,
- ALC - depressive symptoms (not anxiety or pain),
- SAMe - pain at rest and fatigue slightly,
- reishi mushroom powder - physical fitness,
- melatonin - pain & fitness at higher doses, but often stronger side effects,
- pycnogenol (= OPC = pine bark) - pain, stiffness,
- magnesium chloride spray - cramps, fatigue,
- capsaicin - pain
- Cellfood [?! - see below]
no evidence to help fibro:
- iron (only for low iron)
- ginseng
- ALA
- “Prelief” “even” worsens for some [well, can’t anything worsen for some?]
Bad ones for me were 5-HTP and melatonin and would have been capsaicin, Cellfood sounds incredible silly, I would never have listed that.
c) As I’m getting a bit more focal seizures I was wondering if nattokinase, naltrexone or candesartan can have to do with them. It seems not: no evidence for nattokinase nor candesartan, whilst naltrexone decreases seizures:
The opioid antagonist naltrexone decreases seizure-like activity in genetic and chemically induced epilepsy models.
Quality of life: 90%
Lessons in self-care: Still got to watch for my back.
Reasons to be cheerful:
a) Plant/fungi life: All the leaves in the garden are colourful fun, so good to rake into small piles and then piling them up next to the composter.
b) Bird life: Blackbird song and on the balcony. Others scarce.
c) Animal life: Stable day with Harley, some feeding meals he eats hardly nothing, but still keeps his weight, so he’s eating himself too.
e) Human life: Forum “work” was rewarding.
f) Environment: Always good outdoors, whatever the weather.
g) Body: Still managing quite a lot.
Simplified: -
Foggies: -
Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting
Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023