Dr. Anne Maitland’s presentation on Allergies & Mast Cell Activation Syndrome in EDS Patients.

[Ariyon]

Dr. Maitland is an amazing physician, an amazing human and a rare resource.  Thank you so much for this talk... M. Workman

[kakilong]

Highly informative presentation. Thank you DR Maitland.

[pinkygreen]

Thank you so much for keeping this excellent presentation available.
I have EDS III and POTS. And was MCAS dx'd since the date of original presentation.
So helpful.

[plumeria_fluff]

My chronic swelling in ankles, feet, and calves was strangely relieved after I took a benedryl at bed time which made me pee twice during the night and when I woke all the swelling was gone. This worked better than prednisone! I switched from Loratadine to generic Zyrtec and switched my GERD meds to Zantac and my cough seemed to improve for a while and so did the edema but seemed to become less effective after awhile. I suspect the dosage was not enough as others take more mg's 2x a day. My mom has COPD and Emphysema and when she vacationed with me twice, she took Zyrtec everyday and her cough went away but came back each time she went away for a few days and didn't take the Zyrtec. When she took it again, her cough went away. I suspect my EDS is from my mother. I also had a severe allergic reaction to raw egg and have never been allergic to raw eggs. I was dx by an immunologist several years ago with Dermatographic Uticaria and could not do a skin prick test. Blood labwork was done to test my blood for common allergens of which I only showed a slight allergic reaction to dust mites. My GP told me my unexplained hives were "Stress Hives." I developed asthma in my 20's and have had a chronic cough for several years that started at the same time as my unexplained hives. My GP kept prescribing me asthma meds which albuterol helped but I had to constantly use it and the long term controls like Advaire made no difference. I started choking on food a few years ago. The ER dr. told me that late onset egg allergy does not exist but I tested my theory later and tasted a raw baking batter and within 2 minutes my throat and tongue started to swell. I was just dx with RA and was prescribed a chemotherapy drug which I am afraid to start because I feel that MCAS could be the real culprit and cause of the swelling and the joint pain is also due to my EDS. I don't have health insurance and can't afford to keep seeing doctors who don't help me. Is there a MCAS specialist in Florida or a study I could get into without official dx? I've had 4 ACL reconstructions in the past 4 years and my health has gone down hill drastically. I also have Raynaud's, Sjogren's, osteo arthritis, and un-dx POTS, as well as many of the other symptoms discussed.. If you could point me in the right direction, I would be very grateful.

[IreneIreneArt]

Wow so much is finally making sense! Thanks for a great presentation.

[timjosling]

Brilliant talk. Really looking forward to the book.

[elizabeth]

Dr. Maitland, This program was so full of great information! Thank you!

I have a child who has been diagnosed with IBS, and asthma, with no IgE positive allergies in spite of lots of testing. Upper and lower GI negative. Around minute 57 in your webinar you spoke of a great lab test for Non-clonal MCAS that can be ordered at Brigam/Mayo. What is the name of that test? Is CD 117 staining the same as Tryptase staining?

[pchopra]

Very impressive.  Extremely helpful.  Thank you very much

[WendyMoule]

I was on top of my asthma meds but my wheezing was terrible at night. Checked the labels and cetirizine tablets had lactose in them. So I changed over to liquid cetirizine and the wheezing went like magic. Milk allergy!

[CC]

around 41 minutes she mentions neurological symptoms and a webinar later this month. Does anyone have info about this webinar? I have a lot of neurological symptoms with my attacks. Thanks!

[mehrnaz]

What is the name of the test that cannot be ordered in NY?

[sonerogarcia]

I've being trying to onboard my family to Dr. Maitland's clinic for two years. What's the best way to make this happen?

[concertmasterntl]

Brilliant woman. But what about antihistamines setting off restless leg syndrome? If I take more than 1/4 dose of Benadryl, my legs crawl and tingle and burn horrendously.

[jophillipsillustration]

I was told my triptase was 3 and with no demographia I was told I didn’t have MCAS, 5 years ago. Chronic migraines and itching and IC are my main issue with hEDS. Might it be histamine intolerance as Pizotefen helps somewhat which involves antihistamine in the drug?

[plumeria_fluff]

Would the GERD and anti-histimines affect the lab tests for MCAS? Should we not take the meds if we know we are going to be tested for MCAS?

[saludny]

to help those affected by MCAD, whatever the etiology, please read this article about a patient with MCAD.  as a village will we be able to help each other: