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Talk to Me about Mast Cells

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Lyme Disease
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Talk to Me about Mast Cells  
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saraeli
Regular Member
Joined : Jan 2019
Posts : 102
Posted 1/20/2019 5:19 PM (GMT -7)
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....)
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sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1674
Posted 1/20/2019 6:49 PM (GMT -7)
I did not get a formal MCAS dx. My intuition is that I have MCAS issues related to the infections. Ie, I have immune hypersensitivity to the pathogens' toxins, especially babesia. I flare like crazy when I treat babesia, but have found antihistamine combos helpful which is what makes me suspect some type of MCAS issue (I'm not 100%). It's gotten a lot better along with symptoms in general as I've consistently treated babesia, I also have a lot fewer allergy issues than I used to which I think is a result of effectively treating the infections.

It's hard to find doctors who are familiar with MCAS, although I think xpeetzak is seeing an LLMD who has a strong grasp of that condition. Have you read Dr Neil Nathan's book Toxic? I've heard it's good and he talks about MCAS, might have some info and strategies worth looking into.

If you suspect MCAS and experience severe symptoms it may be worth trying to see someone who is well-versed in the condition. Personally I was pretty sick of seeing doctors so I figured I'd try a couple things on my own and gauge how I responded.
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saraeli
Regular Member
Joined : Jan 2019
Posts : 102
Posted 1/20/2019 7:18 PM (GMT -7)
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
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jb1994
Regular Member
Joined : Sep 2018
Posts : 316
Posted 1/20/2019 7:59 PM (GMT -7)
Low histamine diet works best. I would get itchy, skin tingling sensations, and of course the inflammation leads to weight gain for me (but everything makes me gain weight). It's basically an allergic reaction. Antihistamines don't target the same receptors that are affected - mast cells. You are lacking an enzyme that is needed to quell the histamine flame so to speak. There is a supplement that's expensive called DAOsin (I think). There is also quercetin and Vitamin C (3-4g a day at least), those can help.

For me diet is the only thing that makes it flare up, and a flare up can last a long time and make you even more sensitive. Mine was set off by bone broth (though I think that was because it's high in glutamate too). I don't know if it makes my Lyme worse since I've just been feeling crappy throughout the whole process. It sure doesn't help though lol.
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sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1674
Posted 1/21/2019 7:08 AM (GMT -7)
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/
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xpeetzax
Regular Member
Joined : May 2018
Posts : 206
Posted 1/22/2019 1:56 PM (GMT -7)
The following link is by Dr. M (bart guru) at the most recent ILADS conference in Chicago: https://s3.amazonaws.com/zenilads/ilads-2018-chicago/fri-mast-cell-2.html

It's a brief presentation but he mentions how often they find MCAS to be likely in those with chronic lyme/bart and vice versa. MCAS is a complex disorder that has many factors and variables to it. Hope this answers some questions.
Acutely sick 12/2017
Doxy for 1.5 months 4/2018, plateaued
Diagnosed with Bartonella/Babesia/Yersinia with MCAS
Treating with biaxin/rif since 7/2018.
Added malarone 9/2018.
Added rifabutin 11/2018. => Currently on and herxing like crazy.
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