JayCS’s Fibro Blog

Symptoms & Treatments
1047

2022-12-19, Monday - Energy 13-18% / Sleep 70% / Feeling 70-80%-ish / nausea 0%, fog 10%

Successes: :trophy: :zap:
Learnt: :student: Only 0.8g/kg body weight protein is recommended in Germany. Worked out that I get more than that, so I’m actually overdosing at the moment…
New Habits: :new: (6th: 6 less)
:ambulance: 5’ worry time (:white_check_mark:) 5’ plan time (:white_check_mark:), 1-2h me time (:white_check_mark:)
:ambulance: Back: More exercises :white_check_mark: hanging :white_check_mark: massager :white_check_mark: HWB (:white_check_mark:), typing lying on front (:white_check_mark:)
:ambulance: B-supps after getting up, then back, teeth, praps shaving.(:white_check_mark:)
:ambulance: Use daylight lamps in the mornings now it’s darker.:cross_mark: Foggot. :rofl:
:ambulance: Try taking my antihistamine at 18:00. (:white_check_mark:)
:ambulance: Bed earlier. :white_check_mark:, but night went wrong.

Today’s symptoms sorted by the ACR 2016 criteria

Widespread pain, WPI = 11 of 19 areas: limb-Ache 8 (20-10%, stiff 10%) + spine-pain 3 (60%, not directly pain, but extremely yucky feeling), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (87-82%), insomnia 3 (30%), fog 2 (10%), headache 0 (0%), GI 1 (10%), depression 0

Triggers & resulting Symptoms

JAB#3 (on Nov 7th) → MCAS / histamine:
Today: “10%” altogether = 20% energy for under 45’, then white lips & pale face
Night ‘histaminey’ problems: (with +.25g GABA): nostrils ?15% nauseous 0-?15-10% stomach 0-?20% sinuses 0-?10-0% headache ?0% sore throat ?20%.
Day condition: Nausea 0%, white lips 30%, pale face 30%, “ill ache” off and on 0%, sliding around indoors (stiffness, fatigue & nausea) 10%, cold intolerance (cold shower yes, but long johns day and night, plus hoodie at night) 30%, PLUS sneezing 10x really badly, with itchy nose twice, after eating baked beans an hour before.
Tendencies:
Nov 17th 15:00 breaking down ‘ill’.
Nov 18th, directly before getting up, energy suddenly down from 20 to 10%.
Nov 20th: energy and well-feeling picked up again, despite often overdoing it a bit.
Nov 23rd: Before I was winning at table tennis all the time, from now clearly losing all the time, except 29th. But ~20% energy is there for up to 45’, then I break down with green-grey face & white lips thru activities incl. socializing.
Dec 2nd-4th: Winning TT, playing easily, 5 games (with break, very cold), since then 4-5 games every day, winning most.
Dec 6th: 1.5h appointment, 2.5h grandchild, 2x40’ garden (slow), TT moderate.
Dec 7th-8th: Losing TT & energy, but praps cos of too little sleep? However burning tongue from white beans = histamine…
9th ff: TT winning again.
11th midday, 12th ff: Winning, but overall in bad condition.
13th-14th: Winning easily 4:0, and slow energy for 4h!
15th: Losing 2:4 and 16th 0:5, maybe doing too much, too little sleep, missed 1 small GABA dose. 17th 1:3, hurting from game 2, despite sleeping more. 18th 2:4, hurting early again, 19th 1:3 and again…
Treatments: Antihistamine, and extra GABA from Nov 29th.

SLEEP (click for details): 7h50, up 3x (1h53) ✅ ➔ Feeling 80% well, Ache 1 of 7 ✅, getting up: 80%/1 ✅. Nostrils ?20% stuffy ?20% of the night.

A3 teeth0 cold shower0, alternate p0 Sleep 22:45- Why not 21:00? not too much earlier, better slowly forwards.
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
23:45 10’ 80%/1/15% p0 st1 sip fw1’ deep A4 cream HWB#2
(nostrils0% nauseous0% stomach5% sinuses0% headache0% sore throat5%)
0:28 83’ 80%/1/15% p0 st1 sip fw1’ deep. Research: CK, LDH, Leucos.
(nostrils0% nauseous0% stomach5% sinuses0% headache0% sore throat5%)
Argghh, spine feels so yucky, initially somehow/seemingly triggered by a hot water bottle, that I can’t lie down, need to move a bit and distract, hanging didn’t help much, praps massager? Didn’t do much, but I could still a bit… till it started again
2:50 20’? 80%/1/15% p0 st1 sip fw1’ deep, but now yucky back nerves again → FAS: better
(nostrils0% nauseous0% stomach5% sinuses0% headache0% sore throat5%)
4:42 10’ 30%/3/15% p0 st1 sip fw1’ deep, like often now my bladder hurts a bit from holding on “so much”. HWB#3
(nostrils0% nauseous0% stomach5% sinuses0% headache0% sore throat5%)
-8:28 B1-4 ‘ in sun, stools firm?
Sum: 8h28+1h15-(83+20+10=)1h53 = 9h43-1h53 = 7h50, up 3x (1h53)
80%/2/15% p0 (nostrils0% nauseous0% stomach5% sinuses0% headache0% sore throat5%)

ACTIVITIES (aim: 40% energy) ➔ ACHE: ➔ TT 1:3 ➔ 80%/4 :cross_mark:, not communicating too much, but pushing thru very slowly ➔ 80%2/ :white_check_mark:
ACTIONS ➔ PAINS: except GI :white_check_mark:, esophagus :white_check_mark:, pee pain: 0xp1-2 :white_check_mark: lower back unrest :x::x::x:, made the night tough.
Touch: :white_check_mark: Covid: :white_check_mark: Weather: Indoors :white_check_mark: Outdoors :white_check_mark:. Although cold.
Last focal seizures: Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Dec 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.

Treatments

Bloods at cardio Dec 9th: Homocystein a bit high, continue B3 and B2, phosphate not that bad, she says. Leukocytes low! CK, muscular, too high, praps fibro? 20th: seeing the other results, I think the IgG4 is conspicuous again.
Alternative health practitioner Dec 6th: Tomorrow again.
Online course ACT (acceptance and commitment therapy) starting Oct 24th. I’ll delete this, cos I’m keeping it at the back of my mind, but not at the front… and that’s OK, praps put down “thoughts and emotions” as new habits.
Chinese Acupuncturist - Session #32 on Nov 4th., after 14 days :white_check_mark: “Energy still pretty stable at 20%, despite jab-nausea…” so session #33 indefinite.
3rd jab on Nov 7th… :horse_racing:

SELF-PHYSIO (click for details): 2h04 (RR: 0)

white_check_mark: airing 5x2’, alternate shower 1x(10’), cream/oil fc/ey/hd/ft 10x1’, teeth 2x2’, HWB 3x3’, breath exercises 3x1’, Y. Nidra 10’ (or yesterday), massage gun 5x3’, daylight lamp/sun 4x5’, plantar/calf stretch 2x1’, acupressure 0x1’, palpate 0’, belly 3’, back 20’, !!aloe vera 1x1’, twist-stretch 4x1’, yoga/stretching x1’, hang 3x1’. hunchback-pillow ’, wart x1. neck 1+ x1’, RR:
Combine: next?
:x: 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 Nov 27th (45 supps): Supp costs:~421€/m (27th): 2nd: order B2! and eleuthero etc. 27th: 0 eleuthero for a time. 22nd: Try less psyllium at night in almond milk: then pectin? 20th Checked & corrected the pill amounts per tub now that I'm simplifying the system for preparing them.... still differences. Nov 19th: Pill intakes now in tubs. Nov 19th: Vit.C not with copper I found a note, so Cu in the evenings and vit. C the meals before till I get that sorted (4th: +Cu for high dose vit. C again for 8 weeks from Nov 4th). Nov 24th: B2 3x500 (max 1.5g)! 24th: B3/Niacin/nicotinic acid powder1.2, 1.2, 1.0g (evening less). 7th: Check fisetin. 4th: Energy better since restarting quercetin & feverfew. New idea: Creatine? ATP again, encapsulated, for phosphate?? PLANNED/TAKEN TODAY: click for details:

ZERO now: Arg, mum, NAC 1*.5g, NADH, Rib, Se, Sr, Zn. Nov 27th: 0 eleuthero

REGULAR as of Nov 27th (45 supps: R-ALA .2g, aloe vera juice 50+ml/d, alpha-GPC 1x150mg, apigenin 1x50mg, vit. B2 3x400mg, vit. B3/Nia 2x0.8+0.6g, vit. B5/Panto: 1-3x.5g vit. B12 1x5mg/4m, vit. C up to 3x2x.5g, L-carnitine (Cr) 8x0.6g, copper (Cu) 2mg, vit. D3 20.000 IE = 500mcg, + vit. K2 (MK7) 200mcg, DAO before meals, EGCg 1x(50%, incl. L-theanine?).5g, Ellagic Acid (Ell) 2x.2g (+43mg vit. C), eleuthero (eleu) 0x2, Feverfew (fev) .4g (+.2g MSM), Fisetin (fis): 0x196mg. GABA (Ga): back to 3x0.3g+2x.6g=2.1g, ginkgo (Gi) 3x168mg, Glutamin (gltm, glu): 0.6g, Glutathione (gltt) 4x250mg, Hononkiol (Hon) (2%)x2x.4g=16mg, huperzia (hup) 1x0.2mg, Luteolin (lut) .2g, Ω3 1x5mg, Magnesium Glycinate (Mg gly) 2x50mg, Malate (Mg Mal) 2x45mg, Threonate (Mg threo) 50g, monk’s fruit 0.1g, myo-inositol 1x1g/1!d, olive leaf extract (oli) 2x.75, P5P (= vit. B6) 0x27mg, Levagen±PEA 1x0.4g, Psyllium (Ps), passiflora (Pf) 3x.35g, 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) .1g, Silymarin (Sil) (80%) 1x.5g (+83mg L-cholin), L-theanine (The) 2x.2g (+.15g polyphenols), TMG: as much as B3.

What-when-details: Updated Nov 20th.
EARLIER! - forgot the breakfast ones, so took them a bit before lunch, and the lunch ones 1h after lunch, seemed to work.
“16:15” preparing pills
“18:15” A1 PF#1 2 mg mal, mag threo. 1Lut.
5’ empty = praps-worry time.
“18:30” myo-inositol (try → every evenings) + teeth
“19:30” A2=12+1 B2#1 "2"xvB3 B5#1 2Cr#1, PF#2, Qc#1. Cu .3gGABA CoQ10 (oil) TMG#1. Meal: 1PQQ, 5ml Ω3 & Hon#1. monk’s fruit. Cu with amino acids (to counteract high dose vit. C, but not together with vit. C?: 0(?)
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
“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 + Sily +2The Back exercises. Soak seeds.
Teeth.
Meal ’ in sun/lamp. aloe.
’ in sun/lamp C=23/ with meal: vit.B2#2 2xvB3#2 vB5#2 3xvC#1 3xCr#2 .6GABA#4, gink#1, Oli#1 pine bark#1 TMG#2 alpha-GPC 0x2xEleu Hup 2gly PEA Rutin = 23. (vit.D3 1/wk)
“after muesli” C5 2xglutathion
xylitol
nux
teeth
“11:00” D1 (ex-C4) + Teeth (+2h/) gi#2 1 Ellagic acid#1
“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
“after lunch” D3+ 2xglutathion
+xylitol
“16:15” teeth
“16:15” preparing pills: 5x to encapsulate.
“16:15” nux
A1 “18:00”
D4 “17:00” (“meal/acids+2h”) Ellag#2, Qc#4, Rs#2, Ro#2
myo-inositol
Eat + aloe + PQQ+Ω3
A2 + apigenin & heating down
eve:
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c. 2022-04-10, last: 2022-10-25?)

The day's 16 supp-compartments (10', plus 5' making capsules), Nov 20th

Pf: 1A1+1A2+1A3, vB2: A,C,D. vB3: 0,7gA2,0,8gC3,0,8gD3. vB5: A,C,D. vC:0A2+3C3+3D3 8Cr: 2A2+3C1+3D2, Ell: D0+D4. 4-5xGa: a2,a3,a4,C1,D2, Gi: C2,D0,D3 Glutamin: A3 (0c1) Glutathione: 2x"C5", 2x"D3+" (after meal). Hon:A2.A3. Oliv leaf extr:C1D2. pine:C1D2. Qc: A1.A3.B3.D4 Ro:B2,D4 Rs:B3,D4 SINGLE: A1: 2xMgMal, Luteolin. MgThreo. myo-inositol (15’ before meal 1x/(2)d) A2: Cu (separate from P5!)+0P5+1xQ10 (->ubiquinone <150mg/d! atm ubiquinol). (A2:Ω/Pq:meal, A3: apigenin) B2: ALA. B3:Sa. B4: 2Th EGCG&Fev/MSM&Sily C1: alpha GPC. 0x2xeleuthero. huperzia. C2: 2Gly C3:PEA+Ru, DAO before risky meals? monk’s fruit usually evenings, aloe vera. D3 1x/wk.
(A2:0Se), (0NAC: A3, B1,C1,C3,D2)
TALLIES - correct Nov 25th:
A1=6+1 Pf#1 Qc1#1, Lut, 2MgMal, MgThreo… + myo-inositol + (DAO?)
A2=12+1 vB2#1 "2"xvB3, vB5#1, 2xCr#1, Pf#2, Ga#1, Hon#1, Cu, Q10, TMG#1 + Rup.
+Ω3/PQQ/aloe +monk’s +apigenin
A3=5 Pf#3, Ga, Gltm, Hon, Qc#3
A4=1 Ga
B=11 Qc#3, Ro#1, Rs#2, ALA, 2xSa, 2Th, EGCG, Fev/MSM, Sily + (DAO?) = 11/
C=23 vB2#2 "2"xvB3#2 vB5#2 3xvC#1 3xCr#2 Ga#4 Gi#2 Ol#1 Pin#1 TMG#2 alpha-GPC 0x2xEleu 2xMgGly hup PEA Rut = 23, -2 eleuthero. -1 huperzia. = 20/
C5=2 2Gltt
D0=2 Ell, Gi + (DAO?)
D=15 vB2#3 "2"vB3#3 vB5#3 3xvC#2 3xCr#3 Ga#5 Gi#3 Ol#2 Pin#2 TMG#3
25th: -vB5#3: so only 14/
D3=2 2Gltt
E=4 Ell, Qc#4, Ro#2, Rs#2.
B12 4-monthly, D3 Saturdays.

Development

‘Research’ today: No.
ToDo: RSM webinars on lipids Nov 15th, supps on Dec 2nd - still need to get round to that, the fibro webinar transcripts and the MCAS summit before that, as well as reading Murphree’s fibro book, might get a newer edition of that.
Lessons in self-care #514 Bad, lost grip a bit, but still got the right things done in time.
Reasons to be cheerful #548 After feeling smashed for 24h I’m upbeat again.