JayCS’s Fibro Blog

Symptoms & Treatments
706

2022-02-16, Wedneday - 15% - hurting, but happy and getting on.

v3 17:40: TT sort of 2 games, 3 games hurt a lot, but recovery time was quite OK. Lots of research to get my roughly 200 open tabs down which is slowing my laptop down a bit… :crazy_face: (still procrastinating paper work)
v2 13:00: A few errands and I’m hurting - that seems more like 15%…:
10% I’d said for not being able to move at all much for nausea - it’s not quite that bad now, but the achey fatigue is a problem. Judging from table tennis yesterday, which won’t be better today (if it stops raining) I should say I’m at a quarter (2 games instead of 8) of pre-jab. As that was 40% that’d mean at 10%. Well praps I should call not being able to move much “5%”… :crazy_face:
v1: 6:50 up from burning stomach once again: from what? 10:00 Continually prioritizing self-physio list may incite more. 11:00 good new groin exercises.

Triggers & resulting Symptoms

SLEEP (click for details): 7h37, up 5x (43') ✅, but ➔ Feeling 90% well, Ache 2 of 7 ✅, getting up: 80%/2 🧐, due to first brain chatter, then yoga nidra, then stomach burning ache.

No fw! lbu: belly tensing? No half-sitting on sofa! SUPPS & AIR 1st!
cold shower p0 Sleep 22:25-
23:35 5’ 90%/2 p1 st1 drink fw2’ A4 (with a Rupafin, didn’t I take one in A3 already??)
01:00 5’ 90%/2 p0 st1 drink fw2’ air
3:20 5’ 90%/2 p0 st1 drink fw2’ A4 a little unrest in between.
5:28 7’ 90%/2 p0 st1 drink fw4’ A4 good sleep, sinuses/nostrils free (a little clogged, picking/blowing helped), skin burning a little, bit of stomach burn, thermostat good, no HWB nec, but brain chatter/cortisol, so
6:05 21’ p0 st1 drink fw 20’ yoga nidra
-6:45
Sum: 1h35+6h45-(5+5+5+7+21=)43’ = 8h20-43’ = 7h37, up 5x (43’)

ACTIVITIES (aiming for 40% - well 20% - of pre-fibro) ➔ ACHE: 20’ music, rest, 30’ errands, rest, 20’ housework ➔ 80%/3 - sort of. 80% of 20% = 16% - altho it feels a bit less… TT :ping_pong: 3 games, but hurt during 2nd & 3rd game wasn’t as abrupt as yesterday so harder to calculate ➔ 80%/3, and also it came down faster from fw/rest ➔ 80%/2
:x:/:face_with_monocle:
"HOW DO I LOOK?" Always pale/blue lips and tired eyes: 9:38 :trophy: 13:40 slightly redder (errands) :trophy: 17:30 same :trophy:
ACTIONS ➔ PAINS: :white_check_mark:. 8:30 backside hurts, but maybe just cross-legged too long. Or need to use massage pistol. Yep, helped :white_check_mark: GI: Big esophagus block at 15:30 :x:

Treatments

Docs:
Blood results:

  • Copper is at the low end, so I’ll supplement it.
  • Anti-P is negative, so I’ll re-check my old blood note.
  • Why is Factor VIII up? MCAS and CVD? Consequences? Cardiologist.
  • Why is glucose up?: Check chromium? (see research on Feb 15th)

WHB (3 rounds) :one: 9:35 3x1’20’’ :trophy: why so short-breathed today??
RIBOSE: :one: 9:40 .3g cos of the “fatigue”.

SELF-PHYSIO (click for details): 3h12 ... ✅. More combinations. To incite more: List-prioritizing what I might feel like doing next. Temperature still "high" 36,7°C

:white_check_mark: aloe vera 1’, hand-exerciser 2’, belly 2’, back 12’+4’, left twist-stretch 5’, cold shower (10’), breath exercises 6’, Timing, hunchback-pillow 15’, AuTr 20’, facetime 2x1’, breath-hold 11’, foot on/under right knee/cross-legged 25’+13’, workout 7’, horse stance 1’, groin exercises 6’, jolt-jump 2x1’, teeth 1x2’, hair/nails 5’, airing 4x2’, cream fc/ey/hd/ft 7x1’, shaking dance 1’ (itchy skin!), temperature 5’, plantar/calf stretch 3’, loins 3’, bent leg fall 1’, massage gun 8’ for lower back pain,
Combinations
Next: marionette-hang 1’, acupressure 6’,
Good groin exercises: 2, 5 and 6 may be best for me: How to Relieve Groin Muscle Pain in 30 SECONDS - YouTube
:x: HWB 3’, palpate 1’, neck 1+ 2’, neck 2 4’, yoga/stretching 5’,
calendula/tea tree x1’,
:question:: foot bath 15’, gums 2x30’’, V ‘, mirror 2’, RR x2’, nux vomica 1’.

Supps (Feb 12th: 31): Supp costs: ~344€/m (halved CoQ10, no Sr, re-added vit. C.+NAC, minus re-ordering some). CHANGE: Stop NAC again, since showering yesterday was tough. ALA & pine: later(?) - increases alertness; but praps more - for burning mouth? (but I have it in the more bioavailable R-ALA/RLA-form already). Hoffman says quercetin is most bioavailable in the dihydrate form. I've seen dihydrate can be extracted from the Japanese tree at 98%, and that's what mine is so I hope it's also dihydrate - at least it hasn't got additives. CoQ10/ubiquinone <150mg/d better for lp(a). Look for better honokiol & rhodiola. Starting arginine soon for lipids. Magnesium malate good for waking(?), so stopping evenings. RIBOSE!? PLANNED/TAKEN TODAY: click for details:

ZERO: Arg, B3/Nia, Mum, (Nd), Rib, Pe, Ps, Se, 0 Sr 0x31125k.
(REGULAR as of Feb 12th (31, except I need new Mg Gly, Pf, pine bark, Zn & will be starting Ar soon): ALA .2g, B2 2*.1g, B12 5mg/2m, C 12.5g, Cr 31g, DAO before meals, D3 1/w, EGCG 50%.5g (praps also contains L-theanine?) EllagicA .2g (+43mg vit. C), Fev/MSM .4g (+.2g MSM) Ga: 4*.6g+.4g=~2.8g, 3Gi, Glu:~0.8g, Hon 2%.4g=8mg, Luteolin .2g, Mg (Gly) 0250mg, Mg (Mal) 0245mg, Ω3, Nc 1.5g, P5 27mg, Pf4, pine bark 2*.5g, Pq 1, Q10 (ubq) 1*.1g/d, Qc 4*.5g/d, Rs 250%.4g, Ro 2*.2g(+B1 1.4mg (& MgCO3 60mg)), Sa .1g, Sily 80%*.5g (+83mg L-cholin) , The.2g (+.15g polyphenols), Zn 1)
What-when-details: Updated Feb 15th (before: see the reference post)
/19:35 A1/2 “19:00” 0PF#1 0Cr#1 0mal#1+2 P5P/2Rho(0Se) PQQ Ω3 & Qc. Meal: DAO.
/21:35 A3 “21:00” 0PF#2 .6 GABA&.4glu#1 & Lut (slp!) & Qc +1NAC
/21:35 Chamomile tea.
/23:35 A4 “23:00” 0PF#3 .6 GABA&.3glu#2 & Ellagic acid + Rupafin
(B1 “01:00” 0PF#4 0SRP#1)
Heating on! Warm shower?
!/19:35!! B2 “07:00” +ALA+2x pine bark, (teeth)
/06:05 B3 “07:00” (-30’) Q10#1 Qc#1 Rs#1 SAM-e
/06:05 B4 “07:00” EGCg + Fev/MSM + Sily
/8:25 C1/2 “MEAL!” 2Cr#2 .6GAB#3, (C2:) .1gB2, gink#1, Zn (0NAC) 1xHon! DAO?
/8:25 C3 “MEAL” .5gC#1 2The2 (0NAC)
/11:50 C4 “11:00” (+2h/) gi#2 gly#1+2 0SRP#2. Nd#? & Ellagic acid
/1 DAO (D1) “13:00” 0psyllium
/16:55 D2/3 “15:00” .5gC#2,Cr#3,!.6GA#4,gink#3,0gly#3+4, 0NAC#5 DRINK!
/18:55 D4 “17:00” (“meal/acids+2h”) Qc#4.Rs#2, Nd#? 0SRP#3.
eve:
“18:00” Prepare: 1) Cpl & chk/C supp-chg. 2) Remove “v”, cut, save, paste 1x & unhide & paste 2nd (+1 to date and ##). Close 2nd TAB!
(Nov 4th, Jan 10th: B12 5mg methylcobalamin s.c.; next: Mar 10th.)

The day's 16 compartments (10', plus 5' making capsules)

Arg: Capsules? (0)Pf: A1+3+4+B1, B2:A1+C2 C:C3+D2 0x2Cr: A1+C1+D2, Ell: A4,C4. Ga: A3,A4,C1,D2, Glu: A3,a4,0D3, 0Gi: C2,C4,D3 1x2Gly0x2Mal: 0C4+0D3, A2 Qc: A2.A3.B3.D4 Rs:B3,D4 SINGLE: A2:P5/Ro A3: Luteolin+NAC A4: Rup! B2: ALA+0x2 pine B3:Sa+Q1 (->ubiquinone <150mg/d!) B4: EGCG&Fev/MSM&Sily C2:0Zn&Hon C3:2Th (A2:Ω/Pq:meal) DAO before every meal.
(A2:0Se), (B2:0mu), (5NADH if nec.) (D1:0Pe). (0 Nia) (0Nc: A3, B1,C1,C3,D2) (0Sr: B1,C4,D4)

Development
Jab-sfx/MCAS/antihistamine: Not only was sleep good/better incl. free nostrils again, I didn’t need a hot water bottle AT ALL, even after the cold shower, for the first time in “ages”. (However it is a bit warmer outside, so airing doesn’t cool down the room as much as before.)
The fatigue, with some nausea after the 3 games of TT, is I spose the main problem at the moment, and as I can still adjust NAC and normalize the rupafine there’s still some slack.

’Research’ today:

  • Are pale/blue lips related to reduced body temperature? Or praps both just circulation. What healthline names which is relevant is mainly oxygen and circulation, fitting to “Raynaud”-cold feet. My docs won’t say anything else than this, so I just need to keep the connection to other lesser known problems, like the MCAS

  • Best MCAS-food list so far, at last differentiated with criteria: https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf
    “Newly found freedom”: green beans, spelt, bread. Strange that yeast may be a problem (also for many other things) altho I’ve always tolerated it better than sourdough.
    Also brilliant that they say raisins, altho dried fruit, are OK and figs OK-ish.

  • Vitamin C: Hoffman says it’s not proven, just that histamine decreases if vitamin C is higher: “Research has shown that when Vitamin C levels fall in the blood, histamine levels increase exponentially. When Vitamin C is reintroduced, histamine levels fall exponentially. There is very little evidence in the literature, however, to support its use as a natural antihistamine.” Natural Treatments for Mast Cell Activation Syndrome
    (Doesn’t mention the study I’ve found that id decreases DAO tho…)

  • NAC: 3 controversial amino acids in Histamine Intolerance and MCAS However, N-Acetylcysteine (NAC) may cause increased histamine release from mast cells resulting in side effects in sensitive people and contradicting the beneficial effects from anti-inflammatory actions. 6
    In a study using intravenous NAC infusion in humans increased histamine levels were found in just a portion of the subjects. This increase was only present in those who complained of side effects. 7
    Because of the anti-inflammatory and immune-balancing properties that N-acetylcysteine appears to have, it is necessary to consider whether it can be used in mast cell- or histamine-mediated diseases. 8.

Studies "6, 7 and 8"

6 = Barrett KE, Minor JR, Metcalfe DD. Histamine secretion induced by N-acetyl cysteine. Agents Actions . 1985;16(3-4):144-146. doi:[10.1007/BF01983123](Histamine secretion induced byN-acetyl cysteine | SpringerLink.
7 = Waring WS, Bateman D. Histamine release is the associated mechanism following acetylcysteine adverse reaction in man. Clinical Toxicology . 2008;46:396.
8. Wang J, Jin Q, Hu Z, Zhou H. The effects of N-acetylcysteine on the Th1/Th2 ratio in elderly patients with chronic obstructive pulmonary disease. (Journal not supplied here).

This suggests trying to reduce the re-introduced NAC rather than the re-introduced vitamin C as cold showering was tough again yesterday.

  • NMH N-methylhistamine (urinal): Overview & Diagnosis - TMS - The Mast Cell Disease Society, Inc :TMS – The Mast Cell Disease Society, Inc
    My only labs up to now are factor VIII (+3), lipids, genetically (& sometimes GOT&GPT) (=+1) and these aren’t mentioned for the US criteria, and I don’t feel they are independent enough of my other issues. On above page it also says that diet usually doesn’t have that much of an influence unless it’s high histamine… OK, I’ll go for it (“or prostaglandin-D2, or its metabolite, 11β-prostaglandin-F2α (24-hour urine test for any of the three)”.

  • https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2020/06/Mast-Cell-Activation-Syndrome-June-2020.pdf: Other conditions that may be confused with idiopathic- = i-MCAS are IBS and other gut conditions, HIT (food as a major trigger) as well as FM, CFS etc. None of these explain my allergy-type symptoms pre-fibro and post-jab tho. Also they say MCAS does by far not nec. mean low histamine diet, I am right doing as I have been: low FODMAP (in my case Mediterranean) and looking for my own triggers, much better than restricting my diet too much! MCAS is the primary non-clonal version of MCAD as opposed to mastocytosis.
    “To confirm the diagnosis of i-MCAS, laboratory evidence in the form of an elevation above baseline in serum tryptase or metabolites of mast cell mediators (e.g. n-methylhistamine, prostaglandin F2-alpha, leukotriene-E4) during a period of increased symptoms should be present. Of note, the duration of increased mast cell activation symptoms may be variable from hours to days to weeks.” Patients who are suspected of having i-MCAS, but who do not meet the laboratory criteria, may be considered to have “suspected MCAS". In these patients, trials of directed therapies can continue, but only with ongoing testing for other conditions to better explain the presentation with repeat mast cell mediator testing during periods of symptoms.
    … Traditional biopsy tests (including intestinal) with stains to highlight the presence of the mast cells (e.g. CD117 (KIT), tryptase) have not yielded useful diagnostic information to date."

Lessons in self-care #225 Few steps further with self-care and understanding how my MCAS works - similar to FM, but
Reasons to be cheerful #232 Today was a day where my pain/activity wasn’t good, but my spirits were up all the same, I think independently of progress.