The Agony of Mast Cell Activation Syndrome (MCAS) A guide on the diagnosis and treatment of mast cell activation syndrome.

By Lonnie Marcum

I n the winter of 2016, my 17-year-old daughter was dying. She had severe allergic reactions every day, was in constant pain, and was losing weight at a rate that was not sustainable to life. She had reached the end of her rope, and I was completely out of ideas on where to turn for help.

mast cell activation syndrome causes the immune system to attack the bodyEighteen months earlier, after a long illness and finally completing treatment for Ehrlichia chaffeensis, Bartonella, and Lyme disease, she had been doing great. Unfortunately, she soon caught the flu and then everything went south.

Over the next year, one setback after another landed her in the hospital every other month with atrial fibrillation (irregular heartbeat) and/or near-anaphylaxis (acute allergic reactions). Each trip to the doctor took one more piece of hope away from us, since no one could pinpoint the cause of her rapid decline.

Over time, my daughter developed allergies to soaps, perfumes, juices, fruits, vegetables, and lunch meats.

Dr. Lawrence AfrinEventually, she was down to only two foods that didn’t make her lips swell, mouth break out in blisters and throat tighten — sautéed chicken and brown rice noodles.

Not knowing what to do, I reached out in desperation to the “LymeParents” Yahoo! group. Another mother recognized the symptoms I was describing as mast cell activation syndrome (MCAS) and connected me with Dr. Lawrence Afrin at University of Minnesota. Dr. Afrin consulted on my daughter’s case, then referred us to Dr. Mark Renneker, a mast cell specialist at the University of California, San Francisco.

Soon, my daughter received a diagnosis of MCAS and, with it, a path to healing.

Coincidentally, one month after my daughter’s diagnosis, I attended Dr. T.C. Theoharides’s lecture on mast cell activation at ILADS in Philadelphia. In his words……… Join or login below to continue reading.

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