Thoroughly edited Jan 10th 12:35. This is now the longer version of a short one in answer to Freedom here.
Edit Feb 7th, after 10 weeks: Added the new supps and the continuing jab side effects.
My jab-sfx struggle
…against the unusual continuing severe side effects from my 1st Pfizer vaccine on Nov 30th, which are
- greatly increased most fibro symptoms (Fatigue & Ache is 3- to 4-fold, with breathlessness (masks more of a problem again), shakiness & stiffness; colder, but then suddenly I overheat). But not just throwing me back, it’s
- worse than fibro alone has ever been (I can’t even play table tennis, can’t move fast or longer, so definitely can’t work at all) and there are
- new symptoms (sometimes nauseous (all the time the first few weeks), fluey-congested nose) &
- slightly changed symptoms (feverishness, skin burning & itchy & often hurting even from short showering, severe esophagus blocks almost daily, hurt less but are more strongly blocked).
- All despite the fact that I’m taking a maximum of supps (25, 10 of them specifically targetting this) and have increased to a maximum of slow regular exercises & relaxation (3-4h/d!).
There are good things about it:
- all my local pains (incl. GI & bladder) remain zero if I keep up the self treatments.
- my sleep is slightly deeper (but I feel unwell at night, so sleep breaks longer).
- I usually feel pretty good if I don’t move.
- I still enjoy life.
- I don’t miss that much, my laptop helps keep me active, distracted & get new ideas.
Some things are neutral:
- I’ve had to and have been able to give up acupressure, because it’s hurting, and not longer helping after having greatly helped minimizing the local pains. I’ve increased self-treatments & self-care tho.
- Also I have a few hours in between where I feel like before the jab. These have got less tho. And sometimes days which aren’t quite as bad as other - however not getting more. Enough to allow cycle-walks, i.e. slow cycling, but not walks, faster cycling or table tennis. A maximum of 1-2h of activities per day. I sit leant against my sofa almost all day, changing positions/stretching and communicating with the world via laptop almost all the time.
- I am still pretty happy. I’m wearing down tho. Laughing a lot and crying isn’t that far apart.
- I’m managing to make a bit of music sometimes, but singing is hardly possible.
- It’s got pretty clear that it’s a histamine over-reaction, but I’ve already been doing a lot in that direction without it helping.
Worst:
- No improvement. Some things got better in the first few days or weeks, others worse.
- Having to put off dentist’s appointments, altho they are pressing.
- Not being able to play any table tennis.
My hopes:
0) Knowing it’s probably a histamine over-reaction, with probably cytokine immune involvement, means I’m trying to implement things I learn at the forefront of research - so studies, but also youtube for physical treatments I haven’t thought of yet:
Treatments
Physio/physical:
1) Wim Hof’s breath-holding is helping a bit (quality of life at least) so increasing; & integrating more breath-exercises (incl. while cold showering)
2) Thus managing 2 short sharp cold showers for feverishness.
3) Acupressure points for breathlessness etc.
4) Creaming feet regularly and
5) Bathing feet regularly for temperature regulation.
6) Generally creaming more for skin burning & itching.
Supps/homeopathy
for single symptoms
7) Changing GABA/glutamine for stiffness, first increasing.
8) & seizures, which increase cytokines (which?).
9) & bladder pain “syndrome” (cytokines increased - which?) (study)
10) Changed magnesium malate to glycinate at day.
11) Nux vomica D12 (or something else) for nausea.
for histamine
12) Leaving off 2 supps (vit. C & NAC) that are recommended against histamine, but apparently increase DAO seems to have improved a little (showering better)
13) I’m being tested for the histamine enzyme DAO. If that is down, then supplementing it might help - the medical evidence for that helping is scant but increasing.
14) a low histamine diet would mean eating about 5% of what others can eat, instead of 20%.
15) Antihistamines would make me even more tired. My GP recommends for me not to do either, BUT 2-3 weeks?
16) Why not try taking DAO for HIT anyway?
17) Copper for HIT? (verywellhealth).
for cytokines
18) If it were IL-6 in my case after all, would B3 (& magnesium) help after all or make it worse?
Docs
Contact Experts??:
19) my ex-sleep psychiatrist for ideas.
20) via Cort Johnson on Health Rising for single questions.
21) Klimas (954) 262-2850.
22) Chheda OMI/Centre for complex diseases, mainly ME/CFS (650) 447-3001, Charges >1,000$/h.
23) my centre for rare diseases.
Get checked by docs for single symptoms
24) Get checked for eosinophilic esophagitis again? By who?
25) Get cytokines etc. checked by immunologist near here??
Where best report this adverse reaction of mine?
Click for post with symptom summary and links (histamine, cytokines, EoE, vaccines, FM)
Click for post with symptom details and progression
Prognosis
On “Health Rising’s expert’s page” there is this comment: " amy on May 6, 2021 at 10:28 am
I’m one of Chheda’s two patients still in a bad flare after 5 weeks. She implied in my recent appointment that this reaction was relatively common and said it could go on for six months or more. Odd since it sounds like this is actually quite rare! Really hope they are eventually able to tease out why this would help some of us, not be a problem for most, and cause major problems for a few – perhaps just a matter of what other viruses we have onboard." Doesn’t sound as if Chheda has answers.
Update Jan 14th. Got almost all 25 under way:
1-10+12 are helping.
11 = increasing nux to several times daily.
13/16/17 = I’ll test DAOsin & copper anyway.
14 = I’m gradually lowering histamine in food.
Won’t try 15 = antihistamines.
Didn’t ask 18 = B3.
Contacted 19, 20 & 25: 2 immunologists near me,
21 + 22 = I’m checking online what Klimas & Chheda say about MCAS, found a lot already.
24 I have a GI-referral for my dysphagia, but need to get everything else down first, if it’s due to MCAS I’ll maybe get it under control that way.
So MCAS, Mast Cell Activation Syndrome, is my next area… The next list is coming up…
Update Feb 7th: tomorrow is the end of the 10th week of the jab sfx
Measures:
1-12 are still helping, so reduced, plus the MCAS-supps (see below) help.
7: Increasing GABA to 4x.6g has reduced seizures & bladder, but stiffness is still a problem.
10: magnesium glycinate is out, so malate now.
12: A bit of vit. C didn’t seem to work, a bit of NAC to improve sleep did (forgot tonight…).
Still experimenting tho.
13/16: Taking NATURDAO before meals seems to help. 14: Reducing histamine also.
15: I’ll chat with my allergologist about antihistamines.
17: I’ll ask my GP to check my copper. It’d be in psyllium, as he said, should start that again.
19: My ex-sleep psychiatrist has no ideas. 20: Nor has Cort.
For experts (19-25) I’ve started with my gastroenterologist (EoE, MCAS and more), trying my allergologist tomorrow, asking my GP for copper and Anti-P tomorrow.
26: I’ve been using almost all A&B (not C) hoffmancentre MCAS-supps as I list them here since Jan 26th, so again I’m between 25 and 30 supps. Due to running out and wanting to see if it makes a difference I sometimes taper some out or stop them, but not these new ones yet: chamomile tea & DAO; not A3 curcumin, not A7 vitamin C, the others slightly higher. Then B.1-8: luteolin, increased ginkgo/ubiquinol, silymarin, ellagic acid, increased pycnogenol, honokiol, parthenolide, except B4 shea oil.
What I need to try more is praps doubling ALA and adding at least 1 NAC at night and praps at least 1 vit. C (buffered).
Symptoms
Tongue burning started again around Jan 30th again. Jan 31st I researched that for real Burning Mouth Syndrome you’d have to see something, and that reminds me that “unreal” again suggests MCAS. And tonight what woke/got me up at 4/5 was realizing how my tongue burning had been suggesting dry mouth, but actually it’s not just sticking together, it’s very painful.
On Sat/Feb 5th I noted
“I still haven’t been able to transgress the 30% mark of physical activity back to 40%, altho most don’t seem that conspicuous to me any more. If I compare once again to the list of jab-sfx here JayCS’s Fibro Blog - #615 by JayCS, quite a few have decreased, but I still have 1-7, 11, and partly 12, 13, 15, 17, 18, 25, which is 14 of 25 (21 of which were there on day 12 and long following). A new one is not being able to focus my eyes properly a lot of the day.”
What is clear is: 10 weeks after it, I am still nowhere near pre-jab, despite all my helpful measures (new & increased supps, breathing & cold showering).
Noting differences to Dec 12th I’d say most are slightly better, some a bit better (skin, heat), but some worse (“burnt” tongue, no bouts of improvement any more), some I know how to treat (sinuses).
Altogether if I was trying to get at 40% activity level pre-jab, I now never get above 30%, and the procedures I’m now going thru (endoscopy, possibly tooth extraction) are sending me down to 10, then 20%, whilst the 2nd jab is now looming up ahead…