MCAS strategies

First, managing triggers as much as possible, including a low-histamine diet, and avoiding: allergens, sensory overstimulation, mold, stress, exertion, heat, cold, etc.

Are you doing any sort of antimicrobial treatment lately? Any degree of herxing can make MCAS flare, and often needs to be stopped entirely until MCAS is under better control.

The supplements that help me the most are curcumin, quercetin, vitamin C, and bromelain. I have not tried DAO, but it's next on my list. H1 and H2 antihistamines did not help me (and contributed unpleasant side effects) but I know other forum members have found them very helpful.

For GI symptoms, oral cromolyn sodium is like a miracle.

DNRS limbic system retraining also was very helpful or me.

Have you read Toxic by Neil Nathan yet? That was a hugely important book for me.

If you want to email me directly (my email address is in my profile) I can share a document with you that includes long lists of things people use for MCAS, including dozens of things I have not tried myself.

Thanks for the responses!

I have read and own "Toxic". It is a good book. I've added in quercetin and vit c before meals without any luck so far. I have some famotodine I'm going to try.

I am on antimicobial treatment. Yeah, the herxing is unbearable and I am housebound. I'm wondering about MCAS, but it seems that the infections themselves can lead to MCAS reactions. Because of that I'd rather not stop treatment, but would rather experiment with treating MCAS simultaneously to see if that makes treatment more bearable. I had unbearable reactions to Disulfiram for the first few months but then I got better and made progress. So far through Jemsek there has only been misery but not improvement. Not treating and letting everything clear out and calm down can help me feel better for a few days but then symptoms start intensifying again. Feel like I'm stuck between a rock and a hard place.

I have not tried DAO, cromolyn sodium, or Ketotifen. I did a short trial years ago with H1 and H2 blockers that I don't remember making much difference. I'm prob going to try again.

I've been doing meditation for years now. It has been incredible for helping me cope but hasn't fixed physical issues. The inflammation can get so bad in my brain and nerves that it seems impossible to relax and sleep. Weed and the occasional Klonopin has helped deal with that but I'm not making any progress in my actual illness.

I'm def going to e-mail you about that document.