Mast Cell Activation Syndrome and Lyme

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MooseGirl
New Member


Date Joined Feb 2017
Total Posts : 7
   Posted 4/11/2017 12:59 PM (GMT -6)   
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?

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3827
   Posted 4/11/2017 1:03 PM (GMT -6)   
Welcome MooseGirl, to the forum.

Sounds like you finally got the right testing done. I was wondering if you were told or knew to do any kind of de-toxing while you were in treatment, -or took any probiotics for you stomach during that time.

We encourage all new members to read through our intro "New to Lyme?....Start here", section at the top of the questions listing.

Lots of people that can't do antibiotics do well with herbal protocols if they start with very low doses, one herb at a time and increase amounts and herbs a little at a time.

Here's a link that may help you lymemd.blogspot.com/2015/03/mast-cells-and-lyme.html?m=1

Post Edited (julymorning) : 4/11/2017 1:06:06 PM (GMT-6)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 4/11/2017 1:16 PM (GMT -6)   
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.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

MooseGirl
New Member


Date Joined Feb 2017
Total Posts : 7
   Posted 4/11/2017 3:00 PM (GMT -6)   
Thank you both for the info. I was well aware about herxing and detox while I was treating. I'll admit that I wasn't the best at detoxing, but I took daily baths with epsom salts (still do). I also used King Chlorella as a binder, and tried another that didn't seem to benefit me. I also did lemon water on the bad days, but struggle to do it more consistently. I did take high doses of probiotics while treating, but haven't been taking them lately. I should probably do that, lol.

I am currently trying to get in to an allergist/immunologist that is supposed to have some knowledge about MCAD. I've called them, but they haven't approved me as a new patient yet. I also have plans to see another LLMD at the end of May, and hopefully he can give some guidance.

I am currently treating the MCAD, and the treatments have proved helpful, just not enough for me to handle medications yet. I actually was put on quercetin for a few months, but then was instructed to stop taking it. I'm not sure what the reasoning behind that was.

IHL
Veteran Member


Date Joined Aug 2014
Total Posts : 2166
   Posted 4/11/2017 3:26 PM (GMT -6)   
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.

mcspike
Regular Member


Date Joined Sep 2016
Total Posts : 165
   Posted 4/11/2017 3:39 PM (GMT -6)   
YES, I JUST received MCAS diagnosis yesterday-its the SOLE reason for my logging in today, to search the syndrome.

Ive been having a HORRIBLE experience with MCAS symptoms. Im 'allergic' to like literally EVERYTHING, even as you put it, "mine own hormones".

I just found out about this syndrome yesterday and am quite scared actually.

My Dr. says its a result of the damage CAUSED BY biofilm toxicity and my bodies INABILITY to detox. I wasnt using enough of the binding supplement that was given me while going after the infections. I was advised to take 3 of the charcoal/red clay, slippery elm bark pills twice PER DAY, but id only taken about 2-3 doses WEEKLY!

So, Im now having to use a very strong binder called cholestryamine twice a day but 4 hours AWAY from any meds or supplemnts.

I'm currently awaiting the pharmacy to get stock of a new prescription cromolyn=a mast cell stabilizer, and will also begin a supplemt called Neuroprotek.

Because of the anaphylaxsis I experienced last Sept. When i startex amoxicillin, and then early March I tried a nasal spray for MarCons, but it gave me severe headchez for TEN days...

Im now practically scared to death, to try anything.

I hope Ive been of SOME help?

Good blessings!

IHL
Veteran Member


Date Joined Aug 2014
Total Posts : 2166
   Posted 4/11/2017 4:34 PM (GMT -6)   
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.

mcspike
Regular Member


Date Joined Sep 2016
Total Posts : 165
   Posted 4/11/2017 9:34 PM (GMT -6)   
Basophils and eosinophils! Its the release of TOO MUCH histamine!

MooseGirl
New Member


Date Joined Feb 2017
Total Posts : 7
   Posted 4/12/2017 12:25 PM (GMT -6)   
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.

sunny40
Regular Member


Date Joined Mar 2016
Total Posts : 91
   Posted 9/18/2017 7:18 AM (GMT -6)   
Moosegirl, I hope you are feeling better these days with your histamine issues. How is it going? Are you now on Lyme and confection treatment too?

I am just wondering if you had to look for a specific allergist to help you with MCAD or are all allergists familiar and treating this?

I need to see an allergist for this too and am wondering where to start, I suppose I need to ask the offices that i contact if they treat MCAD?

Thanks!

dmw52
Regular Member


Date Joined Jul 2010
Total Posts : 315
   Posted 1/11/2018 11:13 AM (GMT -6)   
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.
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