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MCD - Mast Cell Disorders
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Boston Doctors (Read 4183 times)
nikweth
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Boston Doctors
03/31/15 at 00:43:11
 
I was dx with IA/MCAS by the Mayo Clinic in 2011 however have been battling this for about 18 years.  My twitchy periods have been greatly reduced since an official dx primarily through medication revisions and lifestyle changes. However, I still go through periodic bouts of misery, like now!  This is usually triggered by an infection of some sort and then the severe symptoms hang around for about 4 weeks which means heavy medication and a lot of time off work.  I've never been to Dr. Castells however wonder if you already have a dx and a fairly good regime, is it worth going to see her. My local allergist is fabulous however I don't know they she always has the latest info coming her way regarding MCAS.  I have a 17 year old son that is start to show similar manifestations of the MCAS such as hives after an infection (this is my big trigger for anaphylaxis), chest pains, extreme fatigue, digestive issues, etc.  I also have two cousins dx with MCAS and am pretty sure my cousins daughter has MCAS.  My brother died from anaphylactic shock almost 20 years ago after exposure to peanut butter.  We've definitely got a family thing going here.  I see Dr. Theoharides has some natural items such as Nueroprotek that he promotes.  Does anyone have experience with Dr. Theoharides, know how he interacts with Brigham Young doctors or know anything about his supplements?
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Joan
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Re: Boston Doctors
Reply #1 - 09/04/15 at 06:01:35
 
I know that Dr. Theo's supplements are intended to stabilize mast cells, and are very effective for some people.  Some peolpe have had some GI issues with them, so he's producing a version which is supposed to be better.  Someone told me that freezing the pills helps, too.  

I believe that seeing a mast cell disorder expert is very advantageous in terms of medicating, diagnosis, follow-up, and education about this disorder.  Even more critical for you having family members showing symptoms.

Good luck!

Joan

If it's financially and physically possible, I'd recommend going to see on the MCAD specialists.  If Boston isn't close, there are others around the country, including Dr. Afrin in Minnesota.
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