I know many of you here have experience with MCAS and I am hoping to get some opinions regarding my situation. It was recently brought to my attention that the mystery "episodes" that I've always attributed to lyme or babesia may actually be an mast cell type of reaction, but I'm still really not sure.
Basically, what happens is I will have something to eat and then 15-30 minutes later, my body will feel hot, I'll start sweating, and if I can't get things under control I'll usually have 15 minutes of rapid heart rate (usually like 130-180bpm) and difficulty breathing. Not like my throat is closing or anything...I guess air hunger is a better way to describe it. If it's a really bad episode, I'll get tremors too after its over (feels like my body is discharging adrenaline?) and when it's over...It's just over. I go right back to baseline like nothing ever happened within another 15 min. It's so puzzling.
I have had literally hundreds upon hundreds of these episodes in my last 15 years dealing with lyme (also babesia and mycoplasma) and I have yet to totally figure this out. When I first started getting them, it was triggered after a night of having a few drinks of alcohol. When I'm flaring, it could be triggered by literally any food. When I'm feeling better, I seem to have a higher window of tolerance ie.) I can eat bigger meals or foods that I know would previously set me off if I were to be flaring.
There's really only a few scenarios that these episodes will dependably occur. 1.) After eating and 2.) after or before a bowel movement, or feeling like there is distention in my colon (Which has me wondering if this is some type of strange vasovagal response?) OR 3.) after a really long, hot shower or bath. Or overheating in general like if I'm stuck outside in the sun and can't get to shade/cool air.
When I'm in a flare, these episodes can happen after every meal, with any food, which really makes it hard to pinpoint what foods are the actual problem (if any.) Also, when lyme and co went dormant initially, these symptoms did as well.
Does this sound like it could be MCAS? I was always under the impression that MCAS hallmark symptoms included things like itchy skin, hives, you know, typical "allergy symptoms" as part of that picture but I was told that may not always be the case. Anyone with MCAS, can you expand on this for me? I get conflicting information when looking it up online.
I thought about
experimenting with some quercetin or an antihistamine to see if it helps. I'm in a bad flare right now from my lyme treatment and feeling like general inflammation from die-off can be a contributor as well. I really want to figure this out because this is probably my most debilitating symptom and effects my quality of life the most. I have made a ton of improvements with the rest of my symptoms so this is really my last major hurdle!
I appreciate the insight anyone can provide!
Post Edited (Bufflehead) : 6/8/2021 3:45:08 PM (GMT-6)