JayCS’s Fibro Blog

Symptoms & Treatments
1115

2023-02-25, Saturday - Energy 14%

Sleep 90% / Feeling 80%-ish / nausea 0%, fog 10%
Successes: :trophy: T4 again allowed 4x TT, energy sufficient, but Ache up in #3…
:trophy: plus much faster cycling possible for quite a time (2x20 mins) in the evening.
:zap: Pure R-ALA is making my sore lips burn in the mornings, so praps best in capsules for that reason even if I my stomach tolerates it.
Learnt: :student: Histamine problems may come from adding (or getting used to) T4, see below.
:student: Baking soda (incl. potassium bicarb) may stabilize mast cells, but also increase acidity, that explains why it doesn’t work for me.

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:
:ambulance: Note thoughts and emotions (ACT) (: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. Adjusted basic stiffness to st3 = 30% since Feb 24th 2023. Today limb-Ache was sometimes more like 20% than 10%, I've often been understating that here too, and stiffness was partly down to 20% from 30%, spine pain up to 30% from 10%. (click for details).

Today’s symptoms sorted by the ACR 2016 criteria

Widespread pain, WPI = 11 of 19 areas: limb-Ache 8 (10-20%, stiff 30-20%) + spine-pain 3 (10-30%), shoulder-girdles/hips 0 chest / abdomen / jaw 0
Symptom severity, SSS = severity 9 of 12: Fatigue 3 (86%), 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): 6h02, up 3x (1h23), most deep, but difficult getting to sleep after the breaks cos of the T4, but also praps forgetting threonate and apigenin, not getting morning sun and not cold showering, so lots to improve. A cold shower was sposed to get me back to sleep, but heart pumping and pretty awake I after 4 attempts decided to start early & prioritize self-care. ✅ ➔ Feeling 80% well, Ache 2 of 7 ✅, getting up: 80%/1 ✅. Nostrils 20% stuffy 20% of the night. Changed basic stiffness to st3 = 30%.

A3 teeth cold shower p0 Sleep 0:55- Why not 21:00? 3rd # is LBU
Memos: Lower Back: short exercises, twist-stretched, yoga & hanging. massager.
2:10 55’ 80%/2/15% p0 st3 sip fw30’ cough0 deep/ air0 A4 plugs0 cream/ gel/ HWB#0 6
(nostril0/5s% nauseous5% stomach5% sinuses5% headache0% sore throat10% stools0 loose%)
4:45 13’ 80%/2/15% p1 st3 sip fw10’ cough0 deep/ air0 A5 plugs0 cream/ gel/ HWB#0
(nostril20/0s% nauseous10% stomach25% sinuses10% headache0% sore throat10% stools0 loose%)
6:55 15’ 80%/2/15% p1 st3 sip fw12’ cough0 deep/ air0 plugs0->/ cream/ gel/ HWB#0
(nostril0/10s% nauseous10% stomach10% sinuses5% headache0% sore throat10% stools0 loose%)
-8:15 B1-4 ‘9:05 0’ in sun, 80%/2/15% p1 st3 sip fw30’ cough0 deep/ air0 plugs/ cream0 gel/ HWB#0 FCS
(nostril0/10s% nauseous10% stomach10% sinuses5% headache0% sore throat10% stools0 loose%)
Sum: 8h15-55-(55+13+15=)1h23 = 7h25-1h23 = 6h02, up 3x (1h23), most deep, but difficult getting to sleep after the breaks cos of the T4. A cold shower was sposed to get me back to sleep, but heart pumping and pretty awake I after 4 attempts decided to start early & prioritize self-care.

ACTIVITIES (aim: 40% energy) ➔ ACHE: 80%/2, stools ➔ 80%/3 :x:, ➔ TT 2:2 (picking up 0 balls) ➔ 80%/3 :x:, helping move something very heavy up one staircase ➔ 80%/4 :x:, took half an hour to ➔ 80%/2, then fast cycling ➔ 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: 2xp1-2 :white_check_mark:, lower back unrest :white_check_mark:, finger tips: better. (:white_check_mark:). Lips still red inflamed & starting to bleed, pressed to white, tried about 10 balms etc. of all types, bought pharmacist’s “best”, for sores - no help either (: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. Like often, I needed to massage after supps, I now always do it at the least discomfort, and immediately take everything out of my mouth, so nothing else goes down, preferably not even saliva.

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

Click for details on T4 for thyroid, starting Feb 24th, pixie dust amounts, maybe 1% of a 25µg pill, increasing tomorrow, 3rd day, because both positive and negative effects were less than yesterday, also using the energy doesn't cause a backlash like the cortisole-y acupuncture energy did. Results from bloods on Feb 9th: biotin and manganese too high, so I'll stop biotin. 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.

Asked GP about thyroid Feb 23rd, 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): 125'

white_check_mark: airing 5x2’, cold shower 1x(10’), cream/oil fc/ey/hd/ft 20x1’, teeth 1x2’, HWB 0x3’, breath exercises 5x1’, Y. Nidra 20’, massage gun 3x3’, daylight lamp/sun 6x5’, plantar/calf stretch 2x1’, acupressure 0x1’, palpate 0’, belly 3’, back 10’, !!aloe vera 0x1’, twist-stretch 1x1’, yoga/stretching 1x1’, hang 2x1’. 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:

With slight histamine-y symptoms, and now I’m delving into the histamine-thyroid connection.

Ruscio says thyroid over-treatment may be bad for histamine, so treating the gut would be preferable. Stiana doesn’t bitch about hypothyroidism-overdiagnosis, but does agree SIBO and leaky gut may be the main problem - nice histamine overviews on that page by the way* Campbell similar, but says hyperthyroidism can also cause histamine “intolerance” problems, that might explain histamine problems starting T4… )
Only 7 studies on pubmed on levothyroxine and histamine since 2017, none helpful.

Baking soda to stabilize mast cells?

Regarding the mast cell support recommendation of 1/4 tsp baking soda in 4 oz. of water every 4-6 hours, I checked what Janice Joneja has to do with this, and what evidence there is. I can only find 2 webpages showing what Joneja recommends. One is NATURAL ANTIHISTAMINES - ALISON VICKERY which expressly says: “While baking soda is often used in detox baths, it is not commonly used with potassium bicarbonate. The inclusion of both in this recipe is essential.” This dosis is given as 2:1, with 1/2 tsp (once or a 2nd time after 30’) dissolved every 24h. “By adjusting the alkaline balance of the mast cell, the natural antihistamine not only rebalances the oxygen but stabilizes the mast cell”. She prefers this to pharmaceutical antihistamines for daily use, because the body thinks it has to produce more histamine.
The other page is https://healinghistamine.com/blog/fight-histamine-inflammation-in-6-quick-steps/ where Yasmina says “a study just came out confirming the anti-inflammatory effects of this digestive remedy (and baking addition). Apparently sodium bicarb encourages the spleen to promote an anti-inflammatory environment and tells the body that there’s no need to launch a full on protective immune response.” “According to study author Dr. Paul O’Connor at August University, the sodium bicarb basically tells the body that what the immune system is seeing is most likely a hamburger, not a bacterial infection. That’s a pretty useful distinction in my book. Dr. Janice Joneja … has long championed a mixture of sodium and potassium bicarbonate for a reaction (but not daily use).
I can’t resolve the contradiction to Alison Vickery saying for daily use Joneja prefers the 2 bicarbs, whilst for “an emergency” = “a reaction” ?) an antihistamine.
Also I can’t see O’Connors 2018 study (Ray et al.) showing anything that special: NaHCO3 in water reduced inflammation by calming macrophages - not mast cells, as verywellhealth summarizes: good for autoimmune diseases like RA, but doesn’t directly mention us, so I don’t see any evidence for it coming to close to all our (e.g. Hoffman’s) anti-inflammatory MCAS supps. The article/interview on sci.news = sciencedaily = (with photo of O’Connor) jagwire helps me even more by pointing out that the study showed it also makes the “stomach produce more acid to digest the next meal”, something I’ve always suspected and the reason I kept trying but giving it up, cos my hyperacidic stomach doesn’t like that combination. Also “Certainly drinking bicarbonate affects the spleen and we think it’s through the mesothelial cells” (”…that form… connections to the spleen"). They think, not prove. When O’Connor there is cited saying “[o]ne of the many functions of the kidneys is balancing important compounds like acid, potassium and sodium” that gives a pointer why Joneja adds potassium bicarb, which seemingly this study didn’t.
I think the bicarbs will tend to be more helpful for people with stomach hypoacidity rather than me with my hyperacidity. But I haven’t managed to find anything yet aside from O’Connor’s 2018 study (Ray et al.), there might be more, but even then I can’t see any evidence making this comparable to other mast cell supps.

Lessons in self-care #587 Don’t seem to have to be afraid of a backlash from the T4-energy at the moment.
Reasons to be cheerful #628 Got quite a bit done, and wife happy with changes.
Simplified #19 Moving things around in the flat to make them “easier on the eyes”, easier to get to, easier to find.

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