Was having a discussion with our LLMD. He diagnosed my daughter with mast cell activation syndrome (MCAS) several months ago. Since this time, nearly all her symptoms that didn't resolve with lyme/babesia treatment have resolved.
He says that her response to MCAS treatment has changed the way he practices. He now suspects that MCAS may be an autoimmune disorder that is being triggered by lyme. He has started to evaluate all his lyme patients for MCAS and to trial treatment (since the treatments are not at all harsh) on those he suspects having it.
He says he is finding that a very large percent of his lyme patients are responding favorably to treatment targeted at MCAS... which consists of antihistamines and mast cell stabilizers.
Anyway, he asked me if other lymies out there are also being diagnosed with MCAS as well, or if it's not on the radar of the other LLMDs. Based on his experience in his patients, he believes it may be quite common in chronic lyme and may explain at least a portion of persistent symptoms... as it did in my daughter.
So I guess my question is, has anyone here been diagnosed with mast cell activation syndrome? Or has your LLMD mentioned it to you or looked for it?
Posted by Lymetoo (Member # 743) on :
I'm so glad you found an LLMD who is aware of this condition! I do know that Lyme can cause the MCAS.
I suspect it in myself but have not been diagnosed. I just figured it out about a year ago. I was successfully treated for Lyme more than 11 yrs ago but was left with apparent mast cell problems over the past several years.
I have salicylate sensitivity and histamine intolerance .. and those are highly associated with MCAS.
I'm so happy for you and your family to have gotten help with this!
Posted by WPinVA (Member # 33581) on :
Your LLMD sounds very on the ball! Would you mind sharing the specific treatment your daughter was on for MCAS?
I suspect it in myself as well, and would really appreciate the info.
I'm so happy to hear your daughter's success story!
Posted by TX Lyme Mom (Member # 3162) on :
Carrie, If you take advantage of the search engine (small link above, just below "Post a Poll"), you will find over 30 topics which contain something about this. (Hint: I used "Mast Cell Activation" as my search terms, without adding "disorder" or "syndrome" to it, because I wanted to cast a wide net without unnecessarily limiting terms)
Here's a link to my search results, but you might want to change the search terms to see if you find anything else that my search might have missed. Also, take notice that there are 2 pages of topic results, so be sure to click on the little link to "Page 2" so that you won't miss some of the older topics on this subject. http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=search_tng;d=results;record=2457272-164109-YD75;result_start=0 Posted by hopingandpraying (Member # 9256) on :
TX Lyme Mom - your link doesn't work.
Posted by Lymetoo (Member # 743) on :
I couldn't get it to work either ..
Here is a link I found that I posted several months ago:
my LLMD gave me cromolyn sodium because of all my GI issues.
Still have it,haven't given it much of a trial other than a few vials.
Posted by Lymetoo (Member # 743) on :
Shoeless.. That is one thing that many MCAS patients use.
Posted by Robin123 (Member # 9197) on :
I definitely have this - I break out in hives when I touch many surfaces. I carry Kirkland kleenex tissue with me to insulate me from touching surfaces.
My question is, does anyone know why many Lyme patients have upregulated mast cell reactions?
I have a hard time detoxing, genetically. Don't know if that is responsible or not.
I did a 250-substance patch test this past spring with a top industrial dermatologist and found out I am reactive to anything with formaldehyde in it. Formaldehyde is in lots of things!
Carrie, you mention your LLMD does treatments for it that are not harsh - could you say more about that? thx -
Posted by shoeless joe (Member # 45835) on :
yep lymetoo, she prescribed that thinking mast cell so Im guessing LLMDs are starting to look into this.
Posted by Lymetoo (Member # 743) on :
Robin.. Did you read the info in the links I gave?
Posted by ukcarry (Member # 18147) on :
I have suspected this too for a while now. Would you mind sharing some more specific suggestions the LLMD has for treating it?
Posted by Lymetoo (Member # 743) on :
I hope carrie comes back to answer. I think she said that her daughter was given anti-histamines and mast cell stabilizers.
Posted by sammy (Member # 13952) on :
I have been diagnosed with MCAS.
I didn't want to step on toes or anything but since some people seem to be interested in learning more about the condition, I'll give a little information here if that's OK with everyone. I had to do a lot of research myself since I had never heard of it before I was sent for testing.
This past winter I had several bouts of full blown anaphylaxis within about 6 wks along with increased severity in intolerance to foods, activity, heat, etc. Along with my Ehler's Danlos Syndrome, Autonomic Dysfunction, and CVID. These things made my doctor take notice!
(The episodes of Anaphylaxis where new and alarming, the rest of the symptoms had been plaguing me for most of my life.)
I was referred to and Allergy/ Immunology doc that specializes in Mast Cell Disorders at a large University Hospital. He did a thorough evaluation and ordered a ton of labs and tests.
I was kinda concerned when I saw this post because it sounded like some LLMD's are possibly diagnosing MCAS based on symptoms? That scares me because there are many diseases and conditions that cause the same symptoms!
From what I understand (and have researched) you must fully rule out Mastocytosis before diagnosing MCAS.
This means that you must test for all mast cell mediators in blood and urine, during baseline and flares. Take biopsies of skin and or affected organs. And try to get a good bone marrow biopsy.
Here's Some information from NORD- National Organization of Rare Disorders:
To make it very short, MCAS is diagnosed when you have symptoms of Mastocytosis but no markers for the disease, or not enough markers to meet WHO criteria for diagnosis. Also, you must have ALL other symptom causing diseases ruled out before being diagnosed with MCAS AND the treatments must help significantly for the diagnosis to be made.
Hope that makes the muddy water clearer!
Also, I've been told that you are born with Mast Cell Disorders. Infections like Lyme do NOT cause them! I've now discussed this issue with 3 different Immunologists at a large University Hospital.
Infections DO trigger the Mast Cells to degranulate and release their mediators like Histamine which causes the symptoms that we associate with Mastocytosis and MCAS. Our Mast Cells are hyper reactive and the infections/ Lyme are triggering them to degranulate. Along with the other triggers in life like foods, activity, heat, stress...
So that's that for now!
Have fun researching
[ 09-08-2015, 07:13 PM: Message edited by: sammy ]
Posted by sammy (Member # 13952) on :
Oh, sorry that was so long!!!
I hope that it is still readable?
Posted by Lymetoo (Member # 743) on :
Thanks for the info, Sammy! That explains a few things as to why you are so ill. It's a tough thing to handle.
Have you been able to check out some of the Facebook groups on Mastocytosis? The closed one is a good group and very helpful.
I just ran across this today from the "Low Histamine Chef." I can't wait to learn more about this fasting-mimicking diet.
Sammy, I'm glad you figured it out. Thank you for taking the time to provide the info. I will definitely ask my allergist about this!
Posted by carriekaye (Member # 43533) on :
Thanks everyone for your responses.
I suspect that MCAS is an autoimmune disorder triggered by chronic lyme. I get the feeling that our LLMD is of the same mind. I feel very lucky to have him on board.
My daughter has used the following for MCAS: gastrocrom, a mast cell stabilizer
klonopin, a benzodiazapine which is also a mast cell stabilizer
claritin, an antihistmine
pepsid, an antihistamine
ketotifen, an anihistamine and mast cell stabilizer.
Singulair, a leukotriene antagonist
She also eats a low-histamine diet.
If she misses the gastrocrom, she feels generally ill and hot. If she misses klonopin, she gets headaches. If she eats high histamine foods, she feels ill and has significant joint pain... in fact she's determined that tomatoes (and nightshades in general) are poison! LOL
I would like to point out that her LLMD ran tests to rule out mastocytosis before treating for MCAS. Differential diagnosis is always important. However, unlike tests for mastocytosis, tests for MCAS are typically inconclusive.
[ 09-09-2015, 11:24 PM: Message edited by: carriekaye ]
Posted by Lymetoo (Member # 743) on :
Thanks for the info, carrie. I'm glad she is doing so much better!
The one drug I would be most concerned about (for myself) would be the benzos. Klonopin is next to impossible to get off of and you usually have to keep increasing the dosage to get the same benefit.
Posted by ukcarry (Member # 18147) on :
Thank you for the further info, Carriekaye, and hope your daughter continues to improve.
Does she take all the meds you mention each day or were some f them part of a 'staged' plan?
I was supposed to trial Gastrocrom here in UK a few years ago, but it was so expensive that I was afraid to try it!
Posted by carriekaye (Member # 43533) on :
We are fortunate that insurance covers the gastrocrom, because it is quite expensive. About $1400/mo here without insurance.
She is no longer taking ketotifen, but is taking all the others. I think the gastrocrom and klonopin... the mast cell stabilizers... are the ones that have the most effect for her.
As far as the klonopin, she's not using it for the antianxiety properties... so, we don't expect her to need to increase doses to continue getting the same mast cell stabilizing benefits.
Posted by Lymetoo (Member # 743) on :
Anything that is addictive has to be increased in dosage in order to keep working with the same effectiveness.
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