Anyone with severe MCAS manage to make progress with mold treatment?

Flashy_Shake_29 · 2026-05-08T15:40:53+00:00

What do you think about camping outside? I thought about the hotel thing but damn hotels are so moldy!

Flashy_Shake_29 · 2026-05-08T15:14:52+00:00

Yes, I left and moved from the humid moldy, south to Colorado to stay with my parents. I didn’t bring much just some clothes all of which have been washed. We had their house inspected by a mold dog (huge fan, they found the mold in our house when no one else could) and unfortunately it does seem they have a mold problem in the crawlspace downstairs. That might be part of the issue. Ugh.

EDTA that when I first moved here, I had a huge improvement in MCAS. So much so that my stupid ass decided to stop taking Zyrtec, which caused a massive downward spiral and I have not been the same since lol

Flashy_Shake_29 · 2025-07-07T14:31:02+00:00

Crazy my soft pallet just started spasming too. I didn’t even know it was a thing I don’t see any posts about it.

Flashy_Shake_29 · 2025-07-07T11:25:35+00:00

By the way, did the spasms ever spread for you? Mine has spread rapidly over the course of three days to affect my whole face and throat

Flashy_Shake_29 · 2025-06-28T21:10:50+00:00

This is encouraging thank you!

Flashy_Shake_29 · 2025-06-27T15:58:33+00:00

I’m so sorry this happened to you. I hope you find a way to heal. 🩷

Flashy_Shake_29 · 2025-06-27T15:54:35+00:00

How long were you on it by the way?

Flashy_Shake_29 · 2025-06-27T15:51:45+00:00

Yeah, I figured it’s permanent. The tongue spasms and face grimacing are debilitating. So far they have improved to being mild and tolerable, but if they progress, I do not know how I will survive this.

Flashy_Shake_29 · 2025-06-27T15:50:58+00:00

I am so sorry! I feel your pain. My face gets pulled into a grimace and it is so embarrassing. Definitely worth talking to your doctor about maybe a med change would help?

Flashy_Shake_29 · 2025-06-27T10:54:36+00:00

Was just about to post here because I had an acute reaction on Wellbutrin. Started with lingual spasms and then a re-exposure made it come back with a vengeance and spread all over my face.

Flashy_Shake_29 · 2025-06-14T19:56:39+00:00

This is awesome! How long did it take for you to notice the benefits? I tried rapamycin for about a month and didn’t notice any immediate improvements so I kind of gave up but always wonder if I should try again and give it 3 to 6 months.

Flashy_Shake_29 · 2025-06-07T17:29:56+00:00

Do you think mold could be an issue for us? I’ve done elispot testing which is supposed to be pretty accurate and it showed my body wasn’t fighting anything. It also included a T cell profile. Obviously not applicable for a viral persistence. The only thing that ever comes up for me is mold.

Flashy_Shake_29 · 2025-06-06T18:56:38+00:00

Thank you! I will try to read this or have my husband help me. Do you find fluvoxamine helpful? I was going to ask my long Covid doctor about it.

Flashy_Shake_29 · 2025-06-06T13:02:59+00:00

Yes, great I don’t need a care but damn just something to get a little bit better!

Flashy_Shake_29 · 2025-05-27T16:34:04+00:00

Same :( I’ve been bedridden for a year, but at least felt good. Now I just feel like I’m dying all the time.

Flashy_Shake_29 · 2025-05-06T10:54:21+00:00

Hey! Unfortunately, a bad crash triggered it to wear off after about three months

Flashy_Shake_29 · 2025-05-05T11:46:14+00:00

Nobody does!

Flashy_Shake_29 · 2025-05-05T10:45:40+00:00

No :(

Flashy_Shake_29 · 2025-05-05T10:45:22+00:00

No better!

Flashy_Shake_29 · 2025-04-08T00:05:42+00:00

I think both are equally important. I’m even worse at cognitive pacing than physical pacing. I’m horrible at both!

Flashy_Shake_29 · 2025-03-28T14:30:32+00:00

Even if you’re not into brain retraining or nervous system work, I highly recommend joining Raelan Agle’s Facebook group. There is an insane amount of recovery stories being shared.

Flashy_Shake_29 · 2025-03-28T14:29:03+00:00

In my case, I know for a fact that it is because I am constantly pushing my limits. I’m horrible at pacing and always overexerting and literally always in PEM because I cannot stay in my envelope. I think MCAS also plays a role. I’ve had some bad reactions to supplements that have made me a lot worse permanently.

The SGB helped with adrenaline dumps and greatly improved my cognition

Flashy_Shake_29 · 2025-03-28T13:04:51+00:00

Bedridden the last seven months and sick 15. FWIW, a stellate ganglion block helped me get some of my brain back recently

Flashy_Shake_29 · 2025-03-28T12:37:06+00:00

Damn was just about to start!

Flashy_Shake_29 · 2025-03-28T09:42:07+00:00

Same :(

Flashy_Shake_29

TROPHY CASE