Mast Cell Activation Syndrome and Lyme

Since this is my first time posting, I'm going to start by briefly sharing my story. I first got sick in November 2012. It started with fatigue and soreness. By late December, I had pain and swelling in my knees. Started looking for answers, and a positive ANA got me sent to Rheumatology at Stanford. I was bounced around various departments for a while (including infectious disease who said Lyme was not possible) before being told I had fibromyalgia.

Fast forward to 2015, I started having symptoms that fibro didn't explain, so we started looking for answers again. In Jan of 2016, I ended up in an LLND's office a bit by accident. He suspected Lyme, started treating me immediately, and I did the IgeneX testing. It showed that I was positive for Ehrlichia and I think I had at least one lyme-specific band on the western blot. I did the DNA Connexions and was positive for Lyme, Bartonella, Babesia, and Ehrlichia.

I began treating with oral antibiotics, but soon had to stop due to gastro symptoms. I started seeing and LLMD, and began IV antibiotics. Just under 3 months of rocephin, I reacted to the PICC line. We stopped and I got a port put in. I did one infusion of rocephin, and ended up in the hospital with anaphylaxis. Since then, I have reacted to every medicine I've tried.

My LLND believes I developed Mast Cell Activation Syndrome, a condition where a person's mast cells overproduce histamine. I have yet to do testing for this, as my doctor says the testing is hard to do, and he doesn't want to put me through it. However, all treatment for Lyme and co-infections has stopped because of MCAS. I am getting continually worse, but my LLND is extremely hesitant to give me anything, including herbals, as there is a very high possibility I will react to it. I react allergically to a large number of things including smells, food, medicine, and even my own hormones.

I am hoping that maybe someone is in the same situation I am. The Lyme symptoms are terrible, but I feel like I am stuck in a limbo. I'm starting to feel desperate. Advice anyone?

Hi Moosegirl!
Welcome to our community! I"m so glad you found us.

As JulyMorning said, we do encourage everyone to read through our "New to Lyme?" thread as it's packed with a ton of helpful information.

I do know *some* about MCAD, and if you have MCAD, then you MUST do the testing to confirm, as it can turn into a life threatening situation if ignored. Not to mention that you still need treatment for the ongoing infections you have.

If your doctor won't continue with testing and treatments, then you will simply have to find one that will. I've messaged a member on here that doesn't post often because she's really sick with these infections and MCAD herself - hoping that she's up to posting, but she may not be.

I too was wondering what you may have been told or know about detoxing and herxing. Herxing IS a minor MCAD event, but it usually doesn't get too far along for most people. I seem to have a more minor issue with MCAD when I'm in treatment myself - quercetin has been a big help for me, but you shouldn't just try it without testing to find out what you can use and what you can't.

Hey,

Your story sounds like something I could've wrote myself. I got diagnosed with MCAD, my doctor is terrified to give me anything given the crazy reactions.

Your doc says they don't want to "put you through the testing process"? Why? Because of stopping antihistamines or what? I think you should at least push for a tryptase level. For that one you wait until you're reacting and then go in for a blood draw asap. It's time sensitive so you want to try and get it done within 2-4 hours of a reaction. That would at least rule out true mastocytosis.

Have you already been diagnosed with MCAD? As long as its in your chart for an emergency team to see if something bad does happen you should be fine. The testing sucks just like lyme testing so I agree with your doctor about not doing it on that end. Its not hard though, its just blood and urine. The hard part is actually catching an elevation.

Are you taking antihistamines? thats a good way to diagnose, see if the meds help you. It can take a while to figure out what actually helps.

Igm antibodies turn on this allergy weirdness. When they were formulating the failed vaccine they studied how the antibodies react with different parts of the immune system/body. Mast cells are actually immune cells. I forget which one it is specifically, but ya.

IHL- I think going off the antihistamines is the main reason he wants to avoid it. I am aware that the test has to be done soon after a reaction, which is hard since no local labs are capable of doing the test. We recently located one lab that can do it, but it is two hours away. I'll probably have to eat something I react to on the way down.

mcspike- That definitely sounds similar to what is going on with me. I've been taking the cromolyn for a few months now, and it has helped me. I tend to feel a difference if I miss a dose. I haven't heard of the other supplement, but maybe I'll look into it.

I just got an appointment with an immunologist who is supposed to have experience with mast cell issues. It is in two weeks, and hopefully he will have better resources for getting the testing done since he is connected with a larger hospital.

Hi Moosegirl, I hope you have found something that helps with MCAD. I am still waiting to see an allergist. Would love to know how you are doing and if you found some help.