posted
Wondering if anyone else out here has Lyme, POTS and has done any research on the role Mast Cell Activation Syndrome (MCAS) plays in all of this.
I am in the process of obtaining an appointment with a hematologist who specializes in MCAS and am researching a great deal, hoping someone else has some info so I don't have to reinvent the wheel so to speak!
Have treated Lyme for 3 years and had some periods of relative good health, POTS reared its head over the last six months and I am currently going through the med list for that checking off things that help and don't.
But I think there is something to the Mast Cell issue for me in connection with Lyme and POTS. Any input appreciated.
Aimee
Posts: 239 | From Virginia | Registered: Jun 2009
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
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Up.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Don't know anything about your history or whether you have the symptoms of mast cell disease. Had never even heard of that illness until a few months ago. I read and follow 2 other lyme patients who have received that diagnosis in the last few months.
The first lady is from Canada and has a doc in the U.S. Her son who also has lyme has also been given the mast cell disease diagnosis. Here is a link to a post by her.
The 2nd patient is very very sick. She initially had multiple chemical sensitivity I think and then the docs implanted a port which was made from the wrong kind of plastic (one she knew she was allergic to). I think it was 6 months or maybe even a year before they finally discovered the mistake and removed the port. My guess is that that was most likely the trigger for her mast cell disease. She has not updated her caring bridge site in a couple of months but the last post describes in vivid detail one of her symptom attacks.
If I remember correctly there are a few older posts in the journal with some links to general info on mast cell disorders.
Not sure if Elizabeth was ever accepted into the NIH program to do further research on her mast cell disorder. Her daughter has congenital lyme and they were also planning to test her for mast cell disorders I think.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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