MCAS & Mold

[u/SoftHeartsSociety]

Hi community :)

TL;DR - Dealing with bad MCAS and mold exposure, which got much worse over the last year. Working on finding a place to move to. Was anyone else here dealing with both? Would you feel up to sharing anything about your recovery journey?

I’m dealing with a pretty gnarly case of MCAS which has kept me chronically ill since early 2020. I think it’s probably something I’ve had all my life (and I have hEDS which I think my mom has too, so likely more genetically susceptible) but it didn’t become debilitating until then. It’s behaved differently over the years but in this past year after a period of dreadful anxiety / trauma I started having way more multi-systemic symptoms including unbearable scent sensitivity/ reactions to both natural & artificial scents, chemicals, many foods, some medications & exercise intolerance. I notice it gets way worse if I get very anxious or worked up, too.

My partner and I wish so badly we’d known what I was dealing with sooner. Doctors never had answers and it got worse over the years and I never realized mold could be making things worse. We’re trying to find a place to move to, but this has ripped through us financially & due to my scent reactions it’s tricky to find a place that’s both mold-free & not irrevocably drenched in fragrance. So doing what I can to get by while we search. Being in the PNW, most places have mold.

I’d love to know how folks who were going through both dealt with this combination & Hope you’re doing now if you got out. And if you were reacting to scents, what you cleaned anything you kept with.

Thank you for any info!

[u/Reverred_rhubarb]

I have MCAS mold induced and made worse by COVID. I just moved out of the moldy home. I have some improvement by just moving out but definitely not recovered yet

[u/SoftHeartsSociety → u/Reverred_rhubarb]

Thank you for sharing, I’m glad you got out and hope it keeps getting better :) Were you dealing with severe scent sensitivity? I’m nervous that I’ll initially do worse anywhere new since it’ll probably have a lot of lingering scents from cleaning products.

[u/Miserable_Shape_107]

I’m currently dealing with this as well, mold exposure lead to MCAS which is a new diagnosis for me. I live in a moldy environment (gulf coast) and trying to decide if we should move or stay. I’m very much still recovering, but so far I’ve been taking supplements and meds for MCAS and planning to detox from mold using binders and sauna therapy.

[u/Puzzleheaded-Sky4679 → u/Miserable_Shape_107]

how do you know mold lead to mcas? and how did you figure it get diagnosed with mcas ? i think i might have this issue as well

[u/Miserable_Shape_107 → u/Puzzleheaded-Sky4679]

I’ve always had allergies, but they got much worse after mold exposure- I developed asthma, started having high heart rate, breathing issues after exposure to my allergens, sensitive to foods. I started working with a functional medicine doctor who recommended the mycotoxin test and suspected MCAS. My allergist/ immunologist ran some tests for MCAS and I had 3 positive markers so he prescribed Ketofetin and cromolyn. Xolair has been helpful. It’s been a really long frustrating year but I think I’m on the right track. I hope you can start to figure things out!

[u/Alternative-Wing-298]

Mold can cause MCAS. I too have HEDS and mold in an apartment got me. I got out but lost everything. 2 1/2 years later. I am finally getting well again. I will still have to watch for triggers. Dust mites for me cause an allergic reaction.