2023-01-14, Saturday - Energy 12% (down possibly down to yesterday’s severe GI-nausea) → 15% after 17:00.
Sleep 90% / Feeling 60-80%-ish / nausea 10%, fog 10%
Learnt: 
Trials with TNX 102 by Seth Lederman, making FM sleep more restorative.
New Habits: Click for details of those I'm still working on. Last change 14th: deleted B-supps & earlier antihistamine & leg stretches and turned daylight lamp & back exercises & teeth into reminders, leaving (reduced) 4: bed, ACT, stretches & cold food out.
Bed 23:30-8:30/9:00. (
/
)
Note thoughts and emotions (ACT) /()
More leg stretches. ()
Cold foods out of fridge 2h earlier than eating. ()
Today's FM symptoms unchanged from WPI 11 & SSS 9, except....: 0 (click for details)
Today’s symptoms sorted by the ACR 2016 criteria
Widespread pain, WPI = 11 of 19 areas: limb-Ache 8 (10%, stiff 10%) + spine-pain 3 (10%), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (88%), insomnia 3 (10%), fog 2 (10%), headache 0 (0%), GI 1 (10%), depression 0
Triggers & resulting Symptoms
JAB#3 (on Nov 7th) causing MCAS / histamine problems, esp. energy narrowed to 15-20%. 14th: Nausea was definitely GI, not MCAS. White lips 60-80%. 13th: Better, don't think the GI problems have to do with the MCAS. A tepid or warm shower hurts more after than a cold shower during. White lips 60-80%.
JAB#3 (on Nov 7th) → MCAS / histamine since end of Dec: 15-20% energy for under 45’, then white lips & pale face. But if I keep strain down to ‘half speed’ (70%) I can push on thru for hours - with a few breaks and lots of task-switching. Not that much specifically histaminey problems since end of Dec, occasionally sinuses and nausea, no more ill ache. Usually white lips & face 30%, and some sliding instead of walking indoors 10%, bit more cold intolerance 30% (long johns 24/7, 2 thick duvets at night). From Jan on, bit warmer (5-12° C), I’ve swapped long johns for a 2nd pair of pyjama trousers at night and when I’m pretty active at daytime sometimes no long johns, but when out slow cycling/walking. And don’t need hot water bottles any more, whether I can manage a cold shower (usually) or not.
Development summarized: Down: Nov 17th - Dec 1st, worst 17th-18th, best 20th & 29th. Up: Dec 2nd-6th, Down 7th-8th, Up: 9th-14th, best 13th-14th: Winning easily 4:0, and slow energy for 4h! Down: 15th-21st 7 days, Up 22nd to 24th winning roughly 3:1, Unsure: 25th-31st: TT 2:2 or no play possible: 25th 2:2(?), (26th 0), 27th: 2:2, (28th 0 - ordered supps, not cellar), Down: 1st-2nd. Up: 3rd, Down: 4th. Up: 5th.
Unsure: 6th. Sinuses after 80g of baked beans, but not a 2nd time after 70g whilst having taken my antihistamine again, after the 3rd time tongue burning (left side) → for 12h → 24h,… plus eating half? a walnut at 2 by accident, my tongue tip started burning a few minutes later too. 7th: Up (TT 5:1) until flustered by having to get something to the post, making art exhibition very difficult, better after rest.
8th: First down (TT 3:0), then OK-ish - de-cluttering etc. slowly for 4-6h. 9th: Unsure, seemed OK. 10th: 1 DAO allowed 120g of baked beans and half a walnut without tongue burning. 11th: Ache all over, lips white. 1 DAO allowed 120g of red beans with only a bit of tongue burning. 2x 12th: Needing one hot water bottle again at night. Lips even paler after the tooth cleaning. No tongue burning after DAO/red beans. 13th: Better, don’t think the GI problems have to do with the MCAS. Repeatedly when I try a tepid or warm shower it hurts when I come out longer than the hurt when I’m in a cold shower, which I come out of better. 14th: Like yesterday strong flushing from nicotinic acid: why? Yesterday’s nausea was definitely GI, unlikely the jab nausea.
Treatments: Antihistamine, and extra GABA from Nov 29th. Stopping the antihistamine at the turn of the year quickly caused sleep problems.
SLEEP (click for details): 8h54, up 6x (61'), 8h+ deep ✅ ➔ Feeling 80-70% well, Ache 2 of 7 ❌, getting up: 70%/3 ❌. Nostrils 5% stuffy 100% of the night. Two more breaks, 1 long,
A30, A4/ teeth cold shower p0 Sleep 0:30- Why not 21:00? 3rd # is LBU
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
1:25 35’ 80%/2/15% p0 st1 sip fw1’ deep A4 cream
(nostril/s5% nauseous5% stomach10% sinuses0% headache0% sore throat0%)
3:20 5’ 80%/2/15% p0 st1 sip fw1’ deep A5 cream
(nostril/s5% nauseous5% stomach10% sinuses0% headache0% sore throat0%)
4:35 4’ 80%/2/15% p0 st1 sip fw1’ deep air cream
(nostril/s5% nauseous10% stomach20% sinuses0% headache0% sore throat0%)
5:45 4’ 80%/2/15% p0 st1 sip fw1’ deep cream PSYLLIUM
(nostril/s5% nauseous5% stomach10% sinuses0% headache0% sore throat0%)
7:25 4’ 80%/2/15% p0 st1 sip fw1’ deep air
(nostril/s5% nauseous5% stomach20% sinuses0% headache0% sore throat0%)
9:10 9’ 70%/2/15% p0 st1 sip fw1’ deep air cream B
(nostril/s5% nauseous5% stomach10% sinuses0% headache0% sore throat0%)
-10:25 9:15 B1-4 0‘ in sun, 70%/2-3/15% p0 st1 sip fw1’ deep cream
(nostril/s5% nauseous5% stomach10% sinuses10% headache0% sore throat0%)
stools fairly firm in the morning, looser Friday evening.
Sum: 10h25-30-(35+5+4+4+4+9=)61 = 9h55-61 = 8h54, up 6x (61’), 8h+ deep
ACTIVITIES (aim: 40% energy) ➔ ACHE: 70%/3 ➔ TT 0, rest and doing a little ➔ 70%/3-4 Better from 17:30 2 shops 40’, meal break, tidying up cellar 1h30 ➔ 80%/2
14th: Realized I’ve BEEN ACCIDENTALLY OMITTING THE TICK AFTER THE WORD “PAINS” from Nov 16th on, with which I’d been meaning that most local pains are under control, apart from mainly the ones I then mention, which are quite often a problem; so this is how it meant to look:
ACTIONS ➔ PAINS : except GI: Stomach pain again after taking just the 0.3g GABA at 0:20 before bed, after having had to leave out all evening supps (A2, A3) and just taking the sleep supps… , esophagus: have to be very careful most of the time , pee pain: 0xp1-2 , lower back unrest , thumb tip ()
Click for details on Touch, Covid, Weather, last seizures Jan 14th & 5th, last esophagus block Jan 8th, last jaw pain Jan 10th.
Touch: Covid: Weather: Indoors Outdoors . Daylight lamp regularly on.
Last focal seizures: Jan 14th 23:58 (no trigger, praps missing out on .6g GABA yesterday?). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: 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…
Jaw: Hardly & seldom pain since Nov. A bit more in Jan. Jan 10th: A bit after tooth cleaning. Jan 6th: Slightly psychosomatic from memory of a painful time.
Treatments
Click for details on bloods (Dec 9th), practitioner ideas (last on Dec 20th), acupuncture (last on Dec 22nd). Last started masterwort (warily) and Hexacyl on Jan 6th - low & slow. 13th: Unsure if the stomach problems are from those two. 14th: So not taking them together, and then tomorrow again.
Bloods at cardio Dec 9th: Homocysteine a bit high, continue B3 and B2, phosphate not that bad. Leukocytes low! CK, muscular, too high, praps fibro?
Alternative health practitioner (“Heilpraktiker”) Dec 6th+20th: Jan 7th: 2x2 drops + 2x1 drop each. Jan 6th: Started masterwort & Hexacyl, starting much lower than she suggested with 2x1 drop each. 9th: Further research after reply to take manganese and vit. E. 13th: Unsure if the stomach problems are from those two.
Chinese Acupuncturist - Session #32 on Nov 4th., after 14 days “Energy still pretty stable at 20%, despite jab-nausea…”, now it’s down from that so often that I tried #33 22nd Dec. Wasn’t worth it: No improvement, sleep too short.
SELF-PHYSIO (click for details): 87'
white_check_mark: airing 5x2’, cold shower 1?x(10’), cream/oil fc/ey/hd/ft 6x1’, teeth 2x2’, HWB 0x3’, breath exercises 5x1’, Y. Nidra 0’, massage gun 0x3’, daylight lamp/sun 6x5’, plantar/calf stretch 2x1’, acupressure 0x1’, palpate 0’, belly 3’, back 10’, !!aloe vera 0x1’, twist-stretch 2x1’, yoga/stretching 3x1’, hang 2x1’. hunchback-pillow 0’.
Combine: next?
wart x1. neck 1+ x1’, RR: 0, neck 2 0x1’, workout 7’, horse stance 1’, balance roll standing 5’, breath-hold 12’, jolt-jump 1’, marionette-hang 1’, shaking dance 1’, bent leg fall 1’.
[details=“Supps Jan 8th (48 supps): Supp costs: 466€/m (8th) + 16€/m for empty capsules = 482€/m: Jan 14th: Reactions to nicotinic acid are stronger at the moment, interestingly, I’m wondering if it’s due to taking an old product. Jan 13th: Costs would be “doubled” if I didn’t watch for best cheapest products and self-encapsulate: That’s a new job of mine, I spose. Jan 11th: Still to get her MSM, manganese, E as tocotrienol and my silymarin again. And remember to take the masterwort and Hexacyl regularly. Yet to try: Creatine? ATP again, encapsulated, for phosphate?? Click for details on the lists, with dosing batches by times and tubs.”]
ZERO now: Arg, alpha-GPC 1x150mg, fisetin: 0x196mg, huperzia A, mumijo, NAC 1*.5g, NADH, Ribose, Serrapeptase, Zinc, P5P (= vit. B6) 0x27mg (high).
REGULAR as of Jan 8th (48 supps): (R-)ALA .2g, aloe vera juice 50+ml/d, apigenin 1x50mg, vit. B2 6x600mg, vit. B3/Nia 6x0.6=3.6g, vit. B5/Panto: 3x.5g vit. B12 (methyl-C) 1x5mg/4m s.c., AND B12 1x0.2mg (all 3 good types) WITH vit. B9/5-MTHF 1x0.4mg, vit. C 2x3x.5g, L-carnitine (Cr) 8x0.6g, copper (Cu) 1x2mg, vit. D3 20.000 IE = 500mcg, WITH vit. K2 (MK7) 200mcg, DAO before meals, EGCg 1x(50%, incl. L-theanine?).5g, ellagic Acid (Ell) 2x.2g (+43mg vit. C), eleuthero (eleu) 2x4,5mg, feverfew (fev) 3x.4g WITH 3x.2g MSM, GABA (Ga): 4x0.3g+2x.6g=2.4g, ginkgo (Gi) 3x168mg, (L-)glutamin (gltm, glu): 2x0.6g, glutathione (gltt) 1x250mg, honokiol (Hon) (2%)x2x.4g=16mg, luteolin 1x.2g, magnesium glycinate (mag gly) 2x50mg, mag malate (mag mal) 0x45mg, mag threonate (mag threo) 2x50g, monkfruit 0.1g, myo-inositol 1x1g/1!d, olive leaf extract (oli) 2x.75, Ω3 1x5mg, passiflora (Pf) 3x.35g, Levagen±PEA 1x0.3g, pine bark (pin) 2x.5g, PQQ 1, psyllium (Ps), CoQ10 (Q10)(ubn) 1x.1g, quercetin (Qc) 4x.5g, resveratrol (Rs) (50%) 2x.4g, rhodiola (Ro) 2x.35g, rutin (ru): 1x522. SAM-e (Sa) 2x.1g, Selenium 1x.2mg, Silymarin (Sil) (80%) 1x.5g (+83mg L-cholin), (L-)theanine (The) 1x.2g (+.15g polyphenols) (next 2x0.1mg), TMG: 6x0.6=3.6g (as much as B3). Plus rupatadine/Rupafin 1x/d since jab#3 Nov. Plus practitioners recommendations: #1) masterwort / Imperatoria ostruthium, #2) Hexacyl (Sulphur D4, Lycopodium Ø, Berberis Ø), #3) add Steirocall comp. (for “arthrosis” & bones) (& umckaloabo). Not at all sure about any of these, after 3 weeks of Hexacyl, #4 bitter herbs when Hexacyl bottle is finished, #5 more B5 now, #6 “glutathione activator” → upping MSM, selenium, and have asked if manganese and vit. E are important. #7 Pro Mucosa: added Hericium, can’t increase glutamine, asked back about ficin and biotin, #8 Chlorella, #9 B9 as 5-MTHF for homocysteine.
What-when-details: Updated Jan 8th.
Fairly on schedule
“16:00” preparing pills
“18:15” A1 PF#1, 2x threo., Lut, Qc#1.
5’ “empty time” = to see if I need worry time.
“18:30” myo-inositol + teeth
“19:30” A2=12+1 2xvB2#1 2xvB3 vB5#1 2Cr#1, PF#2, Cu, .3gGABA CoQ10 (oil) &! Se, 2xTMG#1. Meal: 1PQQ, 5ml Ω3 & Hon#1. monkfruit.
Meal 20: ’ +xylitol. Back exercises. Soak seeds. aloe.
“20:30” pre-A3 agigenin 1h before bedtime + teeth
“20:30” chamomile
“21:00” A3 PF#3 0.3gGABA & .6glu & Qc#2 Hon#2 + 1 Rupafin or A2
“0:00” psyllium / medicinal clay if a sleep break is 2h before & after other supps.
“2:00” A4 300mg GABA + teeth
“4:00” +0.25 GABA
B=11/ ’ in sun/lamp “07:00” ALA, Ro#1, Qc#3 Rs#1 2xSAM-e EGCg + Fev/MSM#1 + Sily +2The.
Back exercises.
Soak Soak pumpkin seeds & almonds.
Teeth.
Meal ’ in sun/lamp. aloe.
’ in sun/lamp C=23/ with meal: 2xB2#2 2xvB3#2 vB5#2 3xvC#1 3xCr#2 .6GABA#4, gink#1, Oli#1 pine bark#1 2xTMG#2 2xEleu 2gly PEA Rutin = 23. (vit.D3 1/wk)
xylitol
teeth
“11:00” D1(0) + Teeth (+2h/) Ellag#1, Fev/MSM#2, gi#2.
“14:00” 0 Meal ’ in sun +aloe
“14:15” D=15/ ’ in sun vB2#3 "2"vB3#3 vB5#3 3xvC#2 3Cr#3, .6GABA#5, gink#3 Oli#2, pine#2, TMG#3
xylitol
teeth
“16:00” preparing pills: 5x to encapsulate.
E “17:00” (“meal/acids+2h”) Ellag#2, Fev/MSM#3 Qc#4, Ro#2, Rs#2.
A1 “18:00”
myo-inositol
Eat + aloe + PQQ+Ω3 if not earlier.
A2 + apigenin & heating down
(B12 s.c.: 2022-11-04, 2022-04-10, 2022-01-10: B12 5mg methylcobalamin s.c.)
eve:
The day's supp-compartments (8', plus 10' making capsules), Jan 8th
Pf: A1+A2+A3, vB2: 2A,2C,2D. vB3: 2A,2C,2D. vB5: A,C,D. vC:0A+3C+3D 8Cr: 2A+3C+3D, Ell: D0+E. Fev/MSM: B,D0. Ga 4-5x: a2,a3,a4,C,D, Gi: C,D0,D Glutathione: B. Hon:A2.A3. Oliv C,D. pine: C,D. Qc: A1.A3.B.E Ro:B,D Rs:B,D SINGLE: A1: 0xMgMal, luteolin. 2MgThreo. myo-inositol (15’ before meal 1x/(2)d) A2: Cu (separate from P5P etc.!)+0P5+1xQ10 (->ubiquinone <150mg/d! atm ubiquinol), 1xSe. (A2:Ω/Pq:meal, A3: apigenin) A3: Glutamin (0c1), B (or C): ALA, EGCg, 2xeleu, , Ru, 2 Sa, Sily, 2Th, C: 2 Gly, PEA, DAO before risky meals? monkfruit usually evenings, aloe vera. D3 saturdays. (A2:0Se, up soon)
TALLIES Jan 9th: correct?
A1=6+1 Pf#1 Qc1#1, Lut, 2 MgThreo, + myo-inositol + (DAO?)
A2=16 2vB2#1 "2"xvB3, vB5#1, 2xCr#1, Cu, Pf#2, Ga#1, Hon#1, Q10, Se, 2TMG#1 + Rup. = 16
+Ω3/PQQ/aloe +monkfruit +apigenin 16(+5) -1 vB5 = 15.
A3=5 Pf#3, Ga#1, Gltm, Hon#2, Qc#3
A4=1 Ga, A5=1 Ga#2. A6 = 1-2 psyllium.
B=11 ALA, EGCg, Fev/MSM#1, Glutt, Qc#3, Ro#1, Rs#2, 2xSa, 2Th, Sily (DAO?) = 11/
C=22 2vB2#2 "2"xvB3#2 vB5#2 3xvC#1 3xCr#2 Ga#4 Gi#2 Ol#1 Pin#1 TMG#2 2xEleu 2xMgGly PEA Rut = 22 - vB5 = 21.
D0=2 Ell, Fev/MSM#2, Gi, + (DAO?)
D=15 2vB2#3 "2"vB3#3 vB5#3 3xvC#2 3xCr#3 Ga#5 Gi#3 Ol#2 Pin#2 TMG#3 Fev/MSM#2
25th: -vB5#3: so only 14/
E=4 Ell, Qc#4, Ro#2, Rs#2. Fev/MSM#3
B12 4-monthly, D3 Saturdays.
[/details]
Development
‘Research’ today:
This podcast episode is really, really impressive - well-informed, Lederman himself as well as the interviewer, and informative, cutting edge, not just as regards the drug Tonix is developing, also up front with FM pain seeming to be “nociplastic”, well explained.
These are my notes. The part of the podcast is 35 mins, from 7’ to 41’.
But first my main contention, unfortunately, that it’s not my experience that restorative sleep helps any of the other FM symptoms, at least not much:
For my 3rd CoV-jab I again took an antihistamine like for the 2nd one. However this time my sleep got much better, better than ever since I’ve been in my fibro full flare. (Only in combination with my other supps, esp. GABA and passiflora, as well as sleep recommendations, like Huberman’s), Interesting that the antihistamine added helps, because TNX-102 also targets the histamine receptors as well as 2 others. So I’ve decided to keep taking that antihistamine, it seems to have no bad side effects. Despite not having half as strong histamine-y MCAS reactions from the jab no. 3, bivalent, as from the 2nd. My ‘maximum energy’ has decreased another 5% long term from this jab, like after each before, but it is now more stable: 10-20%, instead of before 5-25%. The jab was over 2 months ago, and I can’t see hints of recovery this time. Since the 2nd jab I haven’t changed anything much I can see as relevant apart from Chinese acupuncture for a bit more energy, not working any more, and better sleep supps - Huberman’s magnesium threonate and apigenin.
So restorative, short, effective sleep, usually only 4 sleep breaks, 30 minutes, but the only effect may be on the stability of my reduced fatigue, not pain, or fog, and as said energy worse.
So these are my notes…:
Instead of FM, the parent orga of FDA did a report the National Research Action Plan 19x refer to the connection to CFS, 0x FM.
But funnily there are NO FDA-approved meds for CFS, as opposed to for FM.
Lederman was a doc (assistant professor) before he went into pharma, clinical experience with FM.
16’53’’ TNX 102-1SL tries to target all 4 main FM-symptoms. It’s for bedtime, improves sleep quality, critical symptom, Achilles heel of FM, good for the others too. Not a tranquiliser or a sedative, these get you to sleep quicker, decrease sleep latency, but they knock you out, it’s not restorative. With TNX 102 you only get benefits after 10-14 days, resets the sleep cycle.
It works on 3 different receptors: serotonin receptor type 2, histamine receptor (so like antihistamine) and alpha adrinergic receptors (epinephrin / adrenalin) - with that one single drug. Not knocked out.
It making sleep restorative can hopefully help people heal. Studies only test if 3 months makes them better in the end, but it is hopefully for long term use & help, to reduce pain, fatigue & fog. Specifically for FM sleep. Central sensitisation praps too.
27’. TONIX medical chart review from very big data base 50.000 with Long Covid: 40% of these have multi site pain too. 30’ The amount of 20% getting Long Covid will likely grow, it could decimate the health of Americans. 25% of people with Long Covid are unable to return to work in the US.
32’ TNX 102 is taken sublingually every night, 2+12=14 weeks. Focusing only on pain in both studies. Since pain was important for the FDA when approving the 3 FM drugs, TONIX is confident that they’ll approve of this for Long Covid too. Smartphone app.
34’ Company’s website. tonixpharma.com Beta-App is. 30 sites across the US are actively recruiting for each of the 2 studies.
36’ Pain is a subjective experience, but many other human experiences are subjective too. Pain in animals [maybe pain in animals shows that pain is more similar than other experiences??]. Pain levels, average has over a 4, praps 7, down with treatment. Understanding of pain improves. Shameful opiate crisis in the US. 3 types of pain: nociceptive, neuropathic, nociplastic, with examples. Also affects all 5 senses. Bit like a broken thermostat. Its repair is praps easier cos it seems a software rather than a hardware problem. -41’
Lessons in self-care #544 Still white lips, so took it slow.
Reasons to be cheerful #582 Evening better.
Click for links to jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting
- 8 weeks after jab#3: stabilized
- 1st Jab-sfx-summary, last edit: Feb 7th.
- My food apparently minus broccoli…
- My blog references, e.g. abbreviations, supp chart/overview
- My “How to symptom track & trigger hunt”
- Next up…: Summaries
- Research ToDo: supps webinar on Dec 2nd, fibro webinar transcripts, the MCAS summit, read