Does MCAS Get Better After Lyme?

I know that most who visit this forum regularly are currently sick with Lyme, so those who have gotten better are unlikely to see this and reply, but that said....

When you have MCAS secondary to Lyme disease, does the MCAS go away when the Lyme symptoms subside? I know that in theory MCAS caused by an infection should go away when the infection goes away, but we know that Lyme is tricky, and sometimes the body gets confused and damaged long-term (e.g. lifelong autoimmune illnesses). I'm hoping for someone to share their experience about this.

Thanks!

I'm still waiting to see what will happen in my case. When I was on antibiotics and improving, my reactions and what seemed like histamine symptoms decreased. I was able to back off on antihistamines. Doctor then had me off of antibiotics (still had symptoms and flares), I think because she thought mold was main issue, but then I relapsed. Didn't treat long enough to be symptom free. Just started Dr. J antibiotic protocol through LLPA AW in Asheville so, Lord willing, will get farther this time and see what happens with the histamine.

I've been sick for a long time and have high smell and activity intolerance among other symptoms.

I've been tested for allergies, and they don't seem to be an issue for me so thinking more like histamine or limbic for my issues.

Girlie said...
Hi ChristianwithLyme - welcome to the forum.

I go to the Jemsek clinic .
I’ve heard AW is a great P/A

Thanks. I've seen a lot of your posts about Dr. J. This forum is where I learned about AW in Asheville.
I haven't been with AW for too long (just starting antibiotics) but so far so good. Seems very knowledgeable. So thankful for the help from her.

That's what I hear. I can be a bit sensitive but so far have tolerated antibiotics very well so praying it will be so with this protocol.

Girlie said...
Keep us posted - I’m always interested in hearing from other patients who see DrJ or the NP/PA’s.

I'll try to do that.

Post Edited (ChristianWithLyme) : 11/5/2019 3:00:53 PM (GMT-7)

Sunny40, I wonder about this, too - why some get it and some do not. I would have guessed that someone with known histamine issues - rashes, seasonal allergies, food allergies, etc - would be more likely to develop MCAS after contracting Lyme, but that certainly would not explain it in my case. I was doing very well in terms of tick-borne illnesses and was barely thinking about them for a few months, until I got slammed down with what seems to be an MCAS attack in my gut. I still have not figured out what precipitated it or how to make it stop or even take the edge off. And as I read about people treating this poorly-understood illness, I read that secondary MCAS goes away ... but I have my doubts!

Thanks to those who have replied with their experience.

sunny40 said...
Such a great question!

I am down to minimal TBI symptoms, I don't really think of myself as having them anymore but I still take herbs to keep things away. I have a few occasional rogue symptoms.

I still have MCAS and it has not improved. Dr. D recently did a podcast discussing this and her answer to this question was a bit vague, she said many in their practice continue to treat it.

Unfortunately I don't think much is known and everybody's physiology is different. I wonder why some get it and most do not?

How do you determine that it’s mcas and not lyme and co symptoms?

jb1994 said...
I'm not sure, it seems mine is getting worse with treatment. I'm constantly adding things to my "no" list.

This has happened to me at times. Some mast cell treatments caused worse mast cell activation. Traditional vitamin c was one

I have trouble at times determining whether a symptom is Mast Cell or Lyme. I do know all the symptoms I have decreased with treatment; I also know that antihistamines help me. It also seems definite that my Lyme symptoms get worse when I am exposed to smells, like my stiff neck, etc.