LymeMD blogs about MCAD - Mast Cell Activation Disorder and Lyme

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Traveler
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Date Joined May 2007
Total Posts : 35849
   Posted 6/24/2015 4:14 PM (GMT -6)   
MCAD - Mast Cell Activation Disorder is something that is being seen more and more in the Lyme world. It's a horrible thing to have on top of having these infections, but we need to be aware of it's existence as those with these infections and MCAD or Ehlers Danlos Syndrome (EDS) can be in serious trouble while trying to heal from Lyme and company.

I really like LymeMD and the way he writes, and these were shared with me by a really wonderful lady that I met through this forum. I just can't begin to thank all those that I have learned from through this forum.

lymemd.blogspot.com/2015/03/mast-cells-and-lyme.html?m=1

"Mast cell activation disorder relates to a different kind of inflammation, one that can cause chronic, multisystem disease which remits and relapses displaying unpredictable and diverse symptoms. This disorder is discussed in detail by Dr. Afrin, a hematologist in 2013. His treatise was describing something that sounded like Lyme disease. This disorder presents as a “mystery diagnosis” which takes 10 years or more on average to diagnose. Patients are typically diagnosed with a psychiatric disorder rather than a physical one. These patients, like Lyme patients report bizarre symptoms and unusual constellations of symptoms. The author describes repetitious patterns which he learned to recognize over time."


lymemd.blogspot.com/2015/06/mast-cell-activation-disorder-mcad-new.html?m=1
"Mast cells have long been a greatly under appreciated component of our immune system. These cells are located in all of our tissues and organs, including the brain. When stimulated by the immune system these cells may rupture and spew a wide array of substances into surrounding tissues; severe and varied consequences and symptoms may ensue.

I have discovered that many of my patients suffer with a form of mast cell activation disorder. It is my sense that most of my patients do not have primary MCAD described by Dr. Afrin and others. Typical MCAD patients have a genetic predisposition and suffer with symptoms which date to early childhood (in the absence of Lyme). I see MCAD as a secondary phenomenon which appears as a consequence of Lyme. My patients did not seek out care for this disorder before becoming sick with Lyme/tickborne illness. "


lymemd.blogspot.com/2015/05/claritn-and-minocycline-dark-side-odds.html?m=1
"CLARITIN FOR LYME

You cannot take Claritin to kill Lyme. It has been shown that desloradine, a metabolite of Claritin inhibits the absorption of manganese through the cell membrane of the spirochete. Manganese is used by Lyme bacteria to generate energy in lieu of the iron used by most organisms. In a test tube it works! We have what is called “proof of concept.” Unfortunately the minimum dose of Claritin needed to accomplish this goal is 40 tablets which no one is recommending. Still, it provides a direction for further work.

MAST CELLS

Why do I recommend Claritin? Although Claritin is a weak antihistamine, it helps inhibit mast cell activation. Whereas Dr. Afrin recommends a slow process of therapy to treat MCAD, mast cell activation disorder, I favor more of a shotgun approach, beginning with numerous agents. My patients are too sick to wait for the slow approach. My patients seem to have something different: a hybrid of chronic infection and excessive mast cell activation These drugs are nontoxic and can always be reduced one at a time when patients improve. The more I have used the therapy the more I have been impressed by its efficacy. (Lists of agents are available elsewhere: also consider doxepin for sleep in lieu of trazodone; very potent antihistaminic effects and possible mast cell effects as well). I do prescribe a lot of Claritin but not to kill Lyme per se.

Mast cells may be the overlooked step child of the immune system. They are everywhere and in close proximity to blood vessels. There are omnipresent and heterogeneous. They serve many functions. For example, the glial-mast cell connection or dialogue. The naturally occurring agent palmitoethylanolamide may be helpful based on recent studies."
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
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!

gkamom
Veteran Member


Date Joined Apr 2015
Total Posts : 768
   Posted 6/24/2015 5:51 PM (GMT -6)   
My diagnosis is Fibromyalgia, but within the last 18 months someone pointed out MCAD to me and I found a quite striking similarity. I actually had a couple of appointments with an Allergist that did a fellowship at the NIH with the subject of Mastocytocsis. (spelled wrong). That is the "diagnosis" most people get. The other thing it's called is MCAS.

I replied to someone a day or two ago regarding diet and I apologize that I can't find the post. I went into a lot of info about the "elimination diet".

The doctor's general feeling was a lot of issues people see these issues and it comes down to food sensitivities. If you can eliminate the foods you react too, you can see an improvement of symptoms.

I'm not saying that it doesn't mean you don't have Lyme. The idea is that whatever reason you develop food sensitivities, they will still be there even if you eliminate Lyme and co.

The most important thing I found out was that you can't get a handle on what is the problem by eliminating one food at a time. Most people have sensitivities to multiple foods so you have to start with a few foods, clean out your system and then add things.

Another was that egg whites are a very common allergy even though they are not on any of the lists. I found that out very quickly and it was devastating because egg whites were my main protein.

There is a very good forum that attracts a lot of knowledgable people with MCAD/MCAS is inspire.com. A lot of people end up in the genetic disease group. It's really good because there are a lot of people who have had to really restrict their diet. Lots of good ideas and resources for places to get food products and receipes.

IHL
Veteran Member


Date Joined Aug 2014
Total Posts : 2166
   Posted 6/24/2015 9:23 PM (GMT -6)   
My MCAS acts way different. I react more to temperature, medication, and motion. Food doesn't seem to trigger a response where a 10 minute car ride has me sicker than a dog! It's a totally different story with every single one of us.

I've found a few foods that make me react. Like tomatoes, vinegar and citrus. If I get too hot I'm instantly covered in hives. If I get too cold I feel like I can't breath. It's a really miserable disorder to live around. You have to be pretty careful and stay on top of your medications. Running out of a medication for even half a day can land you in the hospital. No fun!

For me having a mast cell issue has complicated Lyme treatment. One week I'm totally fine with a medication and the next I'm allergic to it. It's absolutely ridiculous. I just can't comprehend how your body can flip flop like that. But believe me, it's entirely possible.

If anyone is having a hard time breathing and feeling like they are suffocating this is a good one to rule out. I blamed babesia and air hunger for the longest time, and it wasn't that at all. When I felt like my throat was swelling it really was. It wasn't just a feeling. The problem with diagnosing this is its almost as hard as Lyme to get to show up. I got so scared that I started taking benadryl when I felt like I was suffocating and it helped. When I told my doctor this he put me on all kinds of mast cell stabilizers and I've felt a lot better since. My tryptase and ige are normal, this doesn't behave like a regular allergy.

Very confusing stuff. I still don't really understand it.

rowingmom
Veteran Member


Date Joined Dec 2011
Total Posts : 1647
   Posted 6/25/2015 4:09 AM (GMT -6)   
Thanks Trav. I know many children on the PANS/PANDAS/Lyme forum benefit from the use of antihistamines, and there have been several discussions on Mast Cell Activation. Perhaps this is the reason.
13 yo daughter:
2010 - Dx ADHD, Tourette’s, Aspergers, motor delay, PANS/PANDAS
June 2011 - Igenex PCR positive bartonella, IND lyme. CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, herbals/homeopathics
April 2013 - ANA titers negative. Weaned abx. Start Buhner bartonella protocol, methylation/detox protocols, organic PerfectHealthDiet gf/cf/sf. Minimize EMF exposure
Nov 2013 – Clinical babesia diagnosis. Start Buhner babesia protocol
Sept 2014 – Symptoms 99% resolved
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