JayCS’s Fibro Blog

Symptoms & Treatments
1113

2023-02-23, Thursday - Energy 10%

Sleep 90% / Feeling 80%-ish / nausea 0%, fog 10%
Successes: :trophy: Lips better at 5, after careful drinking plus dry mouth gel!
:trophy: Lips worse at 10:30, after careful drinking but aloe vera lip balm!: so is it that?
:zap: Maybe the lip balm like my body skin is telling my body to stop producing oil. Trying various alternatives and comparing to how they were at night.
Learnt: :student: The DAO-supplement NATURDAO “3 million (capsules) is delayed-release and 1 million (tablets) is extended-release”. On the 3 mill. Spanish package it says gastroresistentes, can’t find the leaflet at the moment. Just realized it expired in Dec., which would be a good reason to binge trial various high histamine foods on it soon…
:student: The worst T4 side effect I need to watch for is probably more fatigue …
:student: Various things re. my newest bloods - to be continued.

New Habits: Click for details of the 4 I'm still working on. Last change Jan 14th.

:ambulance: Bed 23:30-8:30/9:00. :x::x:
:ambulance: Note thoughts and emotions (ACT) :x:/(:white_check_mark:)
:ambulance: More leg stretches. (:white_check_mark:)
:ambulance: Cold foods out of fridge 2h earlier than eating. (:white_check_mark:)

Today's FM symptoms unchanged from WPI 11 & SSS 9, except....: SSS +0 headache (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 (10%), 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 (10-)15-20%, decreased to mostly 10-15% in January. From Feb 3rd on: 10% energy. Cold tolerance good, just not my fingertips.

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, 4th. Up: 3rd, 5th. Both: 6th-11th - sinuses, tongue, lips, runny, DAO helping. Cold: 12th. 13th: GI: HP supps? 14th: B3-Flushing up!? 15th: Runny nose, 16th-21st & 25th-26th…: Tongue off and on. 23rd-25th: Sore buttock (& leg) muscles like after the jabs since 23rd. 26th: Cold, pain & fatigue, energy from 18% to 10% since 19th. Triggers tooth cleaning and moving out. 27th: Bad. 28th: Bad to better. 29th: OK, considering. 30th: No burning after 200g baked beans, but a bit, later, after then another 50g, short colon sting praps from the tomatoes, no stronger urge from them tho. 31st: Still haven’t regained appetite. From Feb 3rd on: 10% energy. Cold tolerance good, just not my fingertips. 8th: Bit of tongue after red beans, but OK. Feb 12th 6:00: Stronger histamine-y symptoms and stomach pang. Feb 15th: strong headache evening and night probably from red beans without DAO, praps also the sinus burning. Feb 18th: More energy for the first time. Very red lips, looking inflamed, go white when I press them together. From Feb 19th on: back down to 10% energy, everything else fairly OK, incl. at night, incl. cold tolerance, incl. fingertips, but lips’d be white if they weren’t chapped and inflamed.

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): 7h09, up 4x (21'), 6h30 deep. ✅ ➔ Feeling ?80% well, Ache 1? of 7 ✅, getting up: ?80%/1 ✅. Nostrils ?20% stuffy ?20% of the night.

A3 teeth0 cold shower0 p0 Sleep 2:05- Why not 21:00? To get moving stuff done quicker. 3rd # is LBU
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
3:30 5’ 80%/2/15% p2 st1 sip fw1’ cough0 deep air A4 plugs0 cream/ gel/ HWB#0
(nostril/s0/10% nauseous5% stomach5% sinuses5% headache0% sore throat5% stools loose%0)
5:20 6’ 80%/2/15% p0 st1 sip fw2’ cough0 deep/ air/ A5 plugs0 cream/ gel/ HWB#0
(nostril/s40/0% nauseous5% stomach5% sinuses5% headache0% sore throat5% stools loose%0) Lips better!
6:30 5’ 80%/2/15% p0 st1 sip fw1’ cough0 deep/ air/ plugs0->/ cream/ gel/ HWB#0
(nostril/s0/0% nauseous5% stomach5% sinuses5% headache0% sore throat5% stools loose%0) Lips still as good 2!
9:00 5’ 80%/2/15% p0 st1 sip fw1’ cough0 deep/ air/ plugs/ cream/ gel/ HWB#0
(nostril/s5/0% nauseous5% stomach5% sinuses10% headache10% sore throat5% stools loose%0) Lips still as good 3!
-9:35 9:40 B1-4 5‘ in sun, 80%/2/15% p0 st1 sip fw1’ cough0 deep/ air/ plugs/ cream/ gel/ HWB#0
(nostril/s5/0% nauseous5% stomach5% sinuses5% headache5% sore throat5% stools loose%0) Lips might have been worse after aloe vera lip balm.
Sum: 9h35-2h05-(5+6+5+5=)21 = 7h30-21 = 7h09, up 4x (21’), 6h30 deep.

ACTIVITIES (aim: 40% energy) ➔ ACHE: 80%/2, stools ➔ 80%/2 :white_check_mark:, ➔ TT 2:0 (picking up 0 balls) ➔ 80%/2 :white_check_mark:, moving ➔ 80%/2 :white_check_mark:
ACTIONS ➔ PAINS :white_check_mark:: except GI: stools loose0% :white_check_mark:, appetite better from going back to pure veggies (:white_check_mark:), esophagus: carrots extra works :white_check_mark:, pee pain: 1xp1-2 :white_check_mark:, lower back unrest :white_check_mark:, finger tips: better. (:white_check_mark:). Lips still red inflamed, pressed to white (:x:).

Click for details on Touch, Covid, Weather, last seizures Jan 14th & 15th, last esophagus block Feb 20th + 5th, last jaw pain praps Jan 30th.

Touch: :white_check_mark: Covid: :white_check_mark: Weather: Indoors :white_check_mark: Outdoors :white_check_mark:. Daylight lamp regularly on.
Last focal seizures: 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: 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…
Jaw: Hardly & seldom pain since Nov. A bit more in Jan. Jan 6th: Slightly psychosomatic from memory of a painful time. Jan 10th: A bit after tooth cleaning. After: regularly a little bit, 1-2x/d. Better since improving tooth care again and giving that side of the jaw a rest from chewing for a few days from Feb on.

Treatments

So - my GP does want to try T4 cos of my symptoms, despite ‘fairly normal’ results. Said: just watch out for insomnia and palpitations. Pharmacist said start with half a 25µg for a week to get used to the sfx. Knowing my MCAS-overreactions and the way I succeeded weaning in nicotinic acid, I’ll start even lower - not necessarily slow, just at a well tolerable level without throwing my sleep off.
Altho … as better sleep doesn’t help my energy, I might accept more insomnia if I get more energy…
Seizures is a major caveat, so I’ll be starting with pixie dust.
Cardio thinks the recent T4 is enough, but it’s slightly less than Dec…

Click for details on T4 for thyroid, starting Feb 24th. Results from bloods on Feb 9th: biotin and manganese too high, so I'll reduce, LDH & homocysteine slightly too high, so I'll check, Ω3 much too low, so I'll order it again soon. Not re-starting Chinese acupuncture or cryotherapy and/or acupressure after unsuccessful/harmful last sessions.

Bloods at cardio Feb 9th OK, except: manganese too high! Biotin high, which isn’t dangerous, says walrus, but may have distorted the TSH & T4 levels, so thyroid.org recommends " * Biotin, a commonly taken over-the-counter supplement, can cause the measurement of several thyroid function tests to appear abnormal, when they are in fact normal in the blood. Biotin should not be taken for 2 days before blood is drawn for thyroid function testing to avoid this effect." Well, biotin hasn’t helped, but may be causing these problems, so I think I’ll leave it.
Asked GP about thyroid Feb 23rd, and he prescribed T4 to try.
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?

SELF-PHYSIO (click for details): 68'. Body temperature felt brilliant in the cold outside after postponing my cold shower to the morning, nice 'n warm 'n tingling.

white_check_mark: airing 5x2’, cold shower 1x(10’), cream/oil fc/ey/hd/ft 15x1’, teeth 2x2’, HWB 0x3’, breath exercises 3x1’, Y. Nidra 0’, massage gun 0x3’, daylight lamp/sun 2x5’, plantar/calf stretch 5x1’, acupressure 0x1’, palpate 0’, belly 1’, back 7’, !!aloe vera 0x1’, twist-stretch 1x1’, yoga/stretching 1x1’, hang 1x1’. wart x1.
Combine: next?
:x: hunchback-pillow 0’. 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’.

Supps Jan 8th (48 supps): Supp costs: 466€/m (8th) + 16€/m for empty capsules = 482€/m: Jan 11th: Still to get MSM, manganese, E as tocotrienol and my silymarin again. 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, psyllium (Ps), 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, 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 TIME
“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
“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
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.

Development

‘Research’ today: Thyroid, biotin, manganese (cos of bloods).
https://thyroidnation.com/side-effects-t4-meds-levothyroxine/
T4 has quite a lot of side effects, but decreased urine output would be wonderful, fatigue counter-productive, seizures I could counter-act with increased GABA, the rest, like various pain types I think I could deal with quite well. Doesn’t say anything about insomnia, like my GP warned.
According to thyroidcentral sleep improves from cortisol being kept in check by the thyroid: The Link Between Thyroid Problems and Insomnia – Thyroid Central
And forefronthealth recommends improving the liver Hypothyroidism and Insomnia | How to Wake Up Refreshed

Lessons in self-care #585 Need to consolidate again a bit.
Reasons to be cheerful #626 Am getting ahead with everything altho it’s so much.
Simplified #13 Shavings are unbelievably easier to clean out of a bucket on the sink.
Simplified #14 A high bucket for that is better than the bucket lid I tried first.
Simplified #15 Collecting hair wash water in a bucket saves lots of toilet water.
Simplified #16 I blow dryed alternately sitting, standing and bent over with elbows resting above my knees and left arm holding my head. Still exhausting, but quicker recovery.
Simplified #17 Re-newing supp batch bottles and switching the 2 boxes both helps.

Click for links to jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting