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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Help - MCS Rapidly Worsening

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26
I've had CFS since 2011 and developed MCS this year after an attempt to do a high-carb diet.

Concurrent with the MCS I appeared to develop SIBO - this was treated with Xifaxan but since finishing my course my post-meal gas has gotten worse again.

I started cholestyramine for mold detox a few days ago (it contains sucrose and is orange flavored - I'm histamine intolerant) and also started the Rich van K methylation protocol (as an MCS treatment), which includes sugar alcohol.

Over the past couple of weeks I've developed sensitivity to electrical devices. In the past few days, I've developed sensitivity to water (both tap and filtered) and sleep medications. I'm also sensitive to outside air and highly sensitive to laundry detergent.

Any help unraveling this mess is highly appreciated.
 
Messages
56
Get off the cholestyramine. Its a huge interferon stimulant which has sent many people into mcs. Methylfolate also had the same effect on me.
 
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56
Normally i wouldnt blatantly say something like that regarding a medication or health issue, but i feel fully confident saying that
 
Messages
26
The MCS developed months before I started CSM. And my electrical sensitivity has actually gotten better since I started it. Since mold seems to induce MCS, and CSM is its best treatment, stopping CSM doesn't seem like a good idea.
 
Messages
56
You said you started it it a few days ago and have gotten worse in the last few days. ??? Gotta try something, thats a known big one.

Also sounds like you could have yeast problem.

Fyi, most doctors like to space out trialing new drugs/supplements in sensitive folks. If you start multiple things at once and have a bad response, you cant discern which is causing the problem without discontinuation and further individual trialing.

Also sounds like looking into mast cell calming/stabilising therapies might benefit you. Good luck.