u/Flashy_Shake_29

Hey all

I have severe long Covid and MCAS. My symptoms are largely Neuro, but I also get flushing and heart palpitations. I take H1 and H2 blockers as well as 3 mg of ketotifen, which has been a life saver, though there is still a lot of room for improvement. My doctor started me on cromolyn which I was really excited about. I typically tolerate pharmaceuticals well, but decided to start with 5 mg just to be safe. I thought that was absurdly low, but still ended up having an intense flare almost immediately after my first dose. Same thing happened the next day except this time the flare lasted for over 24 hours. I scrolled through Reddit and decided to take a few days off and then restart with just one drop as others suggested. Again, a lot more flaring happened, which I understand is somewhat expected, but it kind of felt like it was snowballing out of control. Just didn’t feel right. It has been 10 days since my last dose and I am still reacting to fucking everything. I really do not understand what happened. Just two weeks ago I was drinking coffee every day and eating many foods. Now I can only tolerate oatmeal.
The brain inflammation is slowly building up and I am starting to crash. Has this happened to anyone else? What the hell can I do?

Everything started with Covid for me. I was unknowingly living in a moldy house and experiencing a plethora of neurological symptoms as well as worsening fatigue, which I thought were all related to my migraines progressing. Then Covid hit and I developed full-blown MECFS, CIRS and MCAS. I’ve been bedbound for a year and a half now. I also have MARCONS. I’m able to take binders but as we all know, that’s not enough for colonization. Other than that, I react to everything. It is driving me crazy because I can’t detox or take antifungals. Small herx reactions result in a 10 day long MCAS downward spiral. I am afraid I’ve tried everything I can to get it under control and it’s just not happening. I take 3 mg of ketotifen, h1/h2 blockers, dao and low histamine diet. Most natural supplements I either react to or are unhelpful. Cromolyn was my last hope but unfortunately it seems like I’m going to be one of those who does not tolerate it. I am running out of options to get MCAS under control and I fear that means I won’t be able to treat this. I am absolutely losing my mind over this. I’m working with a wonderful CIRS specialist, but I am afraid she’s not going to be able to help me. Anyone in a similar situation managed to overcome this hurdle?