JayCS’s Fibro Blog

Symptoms & Treatments
1127

2023-03-09, Thursday - OK THIS IS IT, A VIRUS HAS HIT ME AT 19:00 - AND MY WIFE HAS CoV, tested positive, I tested negative twice.

Well, I was actually keen on developing my energy profile today. And I see no reason to stop it yet, cos the virus is first causing severe pain, but not fatigue. So here goes, death-defyingly… Energy “22%” = of let’s say 16h, I’m not gonna log it precisely, just guesses:

R rest: 0% intensity 30% of the time (5h),
S slow: 60% intensity 30% of the time (5h), - maybe less
M medium: 80% intensity 30% of the time (5h), maybe more
Q quick: 90-100% intensity 5% of the time (1h) - maybe less.
(pre-fibro: 100% intensity 100% of the time.)
Sleep 90% / Feeling 85%-ish / nausea 0%, fog 10%, headache 20% for hours
Cos I now have 100% energy intensity, but only for a few minutes a day, and that’s even harder to express as a percentage, I’ve realized that for me and others it may be better to express the lengths of time in hours and minutes rather than %. I’m sure there must be a shortcut, I think I’ll do a search. Both are “quantity”, not quality, but different types of quantity, “how much” vs. “how long (for)”.
OK, running to the toilet every 20-30 minutes since midday, every 5-15 minutes in the evening, pain increasing at 19:00 making me show that this weird feeling is “feeling ill” at 20:15, starting feeling fluey feverish, a test still seems negative… Best quickly masked to the shops before it’s too late. But energy is still there, I could just go up one flight of stairs 2 steps at a time like in the olden days. Just it hurts however I move. Headache, bit of jaw ache, during table tennis this morning shoulder blade pain…
21:00 after shops: Ache is up to 5, pee pain 6-7, headache 3.
Don’t care what my test says, this is a virus, probably CoV, and nothing else.
22:45 general Ache down to 4, pee pain still 5-7, nausea/stomach (4-5) from some of the evening foods I carefully tested (like cashews, normally excellt), so trying Gastritol and rest.
23:50 Ache incl. headache 3 goes up to 5 when I try to move, pee pain 5-7, GI now 2.

New Habits: Click for details of what I'm working on. Last change Mar 3rd.

:ambulance: Bed 23:30-8:30/9:00. :x:
:ambulance: Gulp supps better, and a gulp after carrots. (:white_check_mark:)
:ambulance: Note thoughts and emotions (ACT) :x:
: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 +1 = 10 = headache off and on, often when moving, not sitting or sleeping. Ache, incl. headache bladder greatly increased to 5-7 from 19:00 on, probably virus, energy still there, for what it's worth (it is tho!!). Adjusted basic stiffness to st3 = 30% since Feb 24th 2023 (click for details)

Today’s symptoms sorted by the ACR 2016 criteria

Widespread pain, WPI = 11 of 19 areas: limb-Ache 8 (10-70%, stiff 20%) + spine-pain 3 (10%), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (80%), insomnia 3 (10%), fog 2 (10%), headache 1 (20-40%, usually when moving), GI 1 (10-50%), 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. Feb 26th: sinuses upon waking up 9:20....Energy up to 20% from T4. (Mar 9th: Tongue tip at 7 -> +GABA A6). Mar 9th evening: Virus Ache of 5-7.

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. 27th: Bad. 28th: Bad to better. 29th: OK, considering. 30th: Foods slightly histamine-y. 31st: Still no 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. Feb 24th: Energy up to 14% due to specks of T4. Feb 26th: sinuses upon waking up 9:20… Energy up to 20% from T4.

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): 8h11, up x (32'), all deep ✅ ➔ Feeling 80% well, Ache 2 of 7 ✅, getting up: 80%/1 ✅. Nostrils 0% stuffy 100% of the night. bit of stomach, no headache, despite late supps again. Changed basic stiffness to st3 = 30%.

A3 teeth cold shower0 p0? Sleep 1:30- Why not 21:00? 3rd # is LBU
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
3:05 6’ 80%/2/15% p0 st3 sip fw1’ cough0 deep/ air/ A5/ plugs0 cream/ gel HWB#1
(nostril/s0% nauseous0% stomach0% sinuses0% headache0% sore throat5% stools0 loose%)
4:45 5’ 80%/2/15% p0 st3 sip fw1’ cough0 deep/ air/ A0 plugs0 cream/ gel HWB#1
(nostril/s0% nauseous0% stomach10-20% sinuses0% headache0% sore throat5% stools0 loose%)
6:58 21’ 80%/2/15% p0 st3 sip fw1’ cough0 deep/ air/ A6/ plugs0 cream/ gel HWB#1 FCS#1
(nostril/s0% sinuses0% headache0% sore throat5%, nauseous0% stomach10% stools0 loose%)
-10:13 B1-4 ‘ in sun, stools loose%
Sum: 10h13-1h30-(6+5+21=)32 = 8h43-32 = 8h11, up x (32’), all deep

ACTIVITIES (aim: 40% energy) ➔ ACHE: 85%/1, stools ➔ 85%/1 :white_check_mark:, ➔ TT 3:2 (picking up 0 balls) ➔ 85%/2 :white_check_mark:, moving ➔ 85%/2 :white_check_mark:, 19:00 Virus ➔ 60%/5-7.
ACTIONS ➔ PAINS :white_check_mark:: except GI: stools loose0% :white_check_mark:, appetite better from going back to pure veggies, careful with the virus-nausea (:white_check_mark:), esophagus: carrots extra works :white_check_mark:, pee pain: 2xp1-2 :white_check_mark:, then suddenly 20xp6-7:x:, lower back unrest :white_check_mark:, finger tips: better. (:white_check_mark:). Lips still better since tea tree salve, pressed to white (:white_check_mark:).

Click for details on Touch, Covid, Weather, last seizures Jan 14th & 15th, last esophagus block Feb 26th + 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 26th: midday: block not waiting long enough with muesli after supps. 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

Click for details: Update Mar 9th: Tea tree oil in paraffin cream has stopped my lips hurting, chapping & bleeding, so some fungus, like foot, maybe from low WBC. Antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms since early March. T4 for thyroid, starting Feb 24th, varying, around small specks of ~0.8µg (2 weeks for half a 25µg tablet). Feb 7th: biotin and manganese too high, so unnecessary, Ω3 much too low. Not re-starting any expert physio. Just today, Mar 9th: I forgot my cardio appt. today, they phoned an hour later, and I caught up another hour later. It was due to waking up late, and wife's CoV as well as my hypering. When I apologised, my cardio said they need to apologise, because I am so nice, always in a good mood despite being much sicker than most other people, and never complain despite usually having to wait for a long time.

The anti-sore cream didn’t work that well, so tried GP’s antifungal cream for my lips Feb 28th, then Mar 1st tea tree oil cream, successful. (Right foot needs tea tree oil too.)
GP prescribed T4 Feb 23rd to try. Day #4 bit more than the days before: Slower energy, histamine-y sinuses and frontal headache.
Bloods at cardio Feb 7th: Most bloods (like B2, phosphate and protein) are better, but still keeping those going, biotin and manganese too high.

SELF-PHYSIO (click for details): 86' if back

white_check_mark: airing 5x2’, cold shower 1x(10’), cream/oil fc/ey/hd/ft 10x1’, teeth 2x2’, HWB 1x3’, breath exercises 5x1’, Y. Nidra 0’, massage gun 0x3’, daylight lamp/sun 6x5’, plantar/calf stretch x1’, acupressure 0x1’, palpate 0’, belly 3’, back 10’, !!aloe vera 0x1’, twist-stretch x1’, yoga/stretching x1’, hang x1’. 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.
CAUGHT UP BY 23:00… WELL…
“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: No.
Lessons in self-care #599 Not worrying for me cos of wife’s CoV - radical acceptance.
Reasons to be cheerful #641 90-100% energy for moments is wonderful!
Reasons to be cheerful #642 A gardener mate of mine will be coming round Saturday.
Simplified #36 Expressing the length of energy intensities in time rather than %.

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