Talk to Me about Mast Cells

I would like to hear from people trying to heal from Lyme who also have mast cell activation issues.
In your experience, how did the two conditions affect each other?
Was one easier to heal from once the other was under control, or did they rise and fall together?
What role did diet play for you?
Did you bother with a formal MCAS diagnosis?
Which treatments were the most effective?
Thanks so much!

Sara (Lyme, ME, POTS, HPA axis dysfunction, wondering about MCAS....)

Thanks, sebreg. I hear you about being unmotivated to consult doctors. I read the term "treatment fatigue" recently and identified so strongly! I am having this issue after treating babesia, so that element fits with my experience as well. Did you try a low-histamine diet, or just antihistamines? Do you mean antihistamine drugs, or herbs, or a combination? Thanks for your reply!

Sara

Ha, totally with the treatment fatigue! I'm just mentally done visiting more doctors who are more often than not clueless and a waste of my time. Not that I know everything about my condition, but most times I have to ceaselessly fight to get them to acknowledge the fundamental basics I'm dealing with, not to mention my treatment decisions which most would view as beyond insane. That said, I would think most doctors who are experienced with MCAS will have some knowledge of lyme/coinfections/mold/metals/etc since these can be important factors contributing to the condition.

My llmd is great and has helped me a lot, but I still have had to do a lot of trouble-shooting on my own. These are complex conditions, no doctor has all the answers which is why I believe we have to self-educate as much as possible so we can understand our options and potential strategies.

For my diet, I didn't go for low-histamine, but I basically went with a vanilla approach of cutting out refined sugars, processed foods, minimizing dairy/gluten. I found the first two most helpful. Astroman and Dude Abides are great resources when it comes to diet and tailoring the approach to the individual. I think astroman recommends certain tests, including food allergy test. I also found exercise would greatly exacerbate my symptoms, and I remember reading somewhere that it can trigger histamine release... I've wondered about that dynamic. But the exercise intolerance has improved a ton as I've treated the infections (most especially babesia).

I take antihistamine combos of allegra and zyrtec, and am also taking quercetin. Like jb1994 mentiosn vit c can help as well. Aerose91 posted some herbal mast cell stabilizers but I can't recall the names. I used the following article as a bit of a jumping off point of things to try for MCAS. Maybe could experiment with diet first, then explore other options? There is also a facebook mast cell group which I found helpful. https://www.lymedisease.org/lyme-sci-mcas-agony/

I started reacting to more and more foods and medications. My LLMD was really into MCAS and did whatever tests might indicate that (never looked into specifics, I got bigger fish to fry). Anyway they were negative/normal but it’s a clinical diagnosis like Lyme anyway. Allergy tests were all negative.

Problem is, his solution was like 4 different Rx antihistamines and mast cell stabilizers, in addition to 3 abx, antidepressants, mood stabilizers, etc. I would have been on 8-10 rx drugs, all of which caused me mental and GI issues.

I turned to my ND instead, who told me about the low-histamine diet (SIGHI list, which is mostly about the rules of fresh food and leftovers; the specific list is not exact for everyone, so it’s trial and error). That, along with quercetin, nettle, bromelain, and vitamin C helped a lot of my issues, but was very difficult to maintain.

Best thing for me was starting Classical Chinese Medicine (not Traditional). It deals with infections AND my histamine issues. At first I reacted to everything - like I was allergic to acupuncture! But in several weeks things calmed down, and certain herbs noticeably keep the reflux and itching at bay. I’m much less sensitive now, though there are some foods I still can’t add back in, and I still have a strict diet. Not sure what’s mast cell and just good ol’ Leaky gut from too many abx. But I have been able to tolerate leftovers and not-so-fresh meats.

The all-in-one treatment offered by CCM appeals to me the most- just get acupuncture and take a combo of herbs that helps balance and heal everything, so it’s not so many supplements and not a strict schedule of this on an empty stomach and that two hours later and this with that but away from the other thing... soooo glad those days are behind me!

I don't know if I have MCAS - because I've never had any of the typical symptoms - no congestion...no itchiness...etc.

But, then after reading that it can cause inflammation resulting in pain...I decided to give Quercetin a go.
I've not had typical patterns (except recently with Rifabutin) - ie herxing, then feeling an improvement after. Just seem to have ongoing inflammation with it getting worse here and there.

The Quercetin seems to be helping....

Girlie said...
I don't know if I have MCAS - because I've never had any of the typical symptoms - no congestion...no itchiness...etc.

What I noticed just seemed like allergies. I got reactions to the typical things people get allergies to (pollen, etc) it was just more intense than it had ever been before.