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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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I guess not having MCAS doesnt mean you dont have it.

The title was intended to sound this confusing because it portrays my confusion best.

Today on my daily and unreasonably high effort on treating this vietnam war zone of a disease called ME/CFS I stumbled uppon a guy that vlogged about his experiences with INUSpheresis. INUSpheresis is a type of Apheresis that has - unlike the HELP-apheresis - no ground in the classical scholar medicine and is highly controversal (not that controversal would mean anything to me, classical medicine means dogbark to me). As I am going for a HELP-apheresis I still thought it might be worth a watch because hey, apheresis should be atleast theoretically related shouldnt they.

I was surprised to hear the guy talk on other stuff aswell like MCAS, gut microbiome and stuff I really find interesting. I just listened and kept thinking, wow my symptoms really align somewhat with his MCAS symptoms.
My MCAS blood tests turned back negative a year ago though. Too bad I thought.

Just after that thought was floating around, he began talking on how MCAS tests are unreliable and had a german university website to actually back that up. The stuff gained my interest and I looked through the whole stuff and found that. according to the University of Bonn MCAS is linked to high LDL and hyperbilirubinema for whatever reason - I NEVER HEARD OF THAT LOL.

Since I came down with my illness i had high LDL the only time where my LDL was under 100 was when I tried a low-histamine diet that subjectivly did nothing to my symptoms.

Now I tend to think, what if its just part of the puzzle? Maybe I should hopp back on low histamine diet alongside mastcell stabilizers and help-apheresis and antiviral/antimicrobial protocol along together? (Step by step of course...)

Lession learned: Never trust the information a MCAS doctor gives you, always look shit up.

Todays treatment regimen:
- Citalopram/Pantoprazol on wakening as usual
- Multivitamin (sunday natural all in one)
- 2x HRV Breathing exercises
- High dose vitamin C
- NAD+

I slept worse then yesterday night according to my fitbit, yet i feel slightly better.
Its just like granpa said: WE DIDNT HAVE ME-CFS IN MY DAY YOUR FOOD IS FULL OF POISON THE GOVERNMENT IS SLOWLY KILLING US THROUGH POPULATION CONTROL.
(he didnt actually said that, its just my weird humour kicking)

Comments

actually did you try high calcium at some point?

also i have higher ldl and lower hdl the last 2 years when this got worse. always had got ratio but now its getting worse.
maybe need to eat more fat.
 
I have high blood Calcium so i cant. Because of high 1,25-vitD my Calcium is rarely normal.
 

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Blazer95
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