Hey Todd, why not consider speaking with one of the masto authorities?  This really is a difficult diagnosis to get, especially if you don't have a classic case of masto.  You could continue going around in circles for years and I honestly don't think you'll find your answers at Vanderbilt.  So, please consider the possibility of travelling.  You may find it very worth the investment!


Lisa

Hi Todd,

Welcome to this forum.  I am pretty new to all of this but have found this to be a site FULL of excellent information, and very caring people as well.  I had been to every kind of specialist there is and every one just shook their heads....didn't have a clue what "to do with me".  I stumbled on this site after one of the great specialists i saw tested me for masto, I didn't show SM but knew he tested me for a reason so I started studying.  I don't have SM but i was just diagnosed with MCAD.  I see Dr. Afrin in South Carolina.  He is wonderful.  He will email you personally (even on the weekend if you are in a "crisis") and is so willing to answer questions and listen to everything you have to say. He does ask that his patients that live a distance from him to have a local doc he can work with.  So once you have gone for an initial visit, you don't have to travel again.

One thought about diet....bananas are high in tyramines.  A low or no histamine diet is important.  I needed more of a low (or NO) tyramine diet as well.  It's actually the banana peel that is high in tyramines....but as the banana "ages/ripens" the tyramines build up.  So.....don't eat anything that has been in your frig for longer than 24 hours and make sure your fruits, veggies, and especially meats are fresh! Be careful not to thaw anything at room temperature as well.
I have a terrible time with all kinds of inactive ingredients in meds (especially dyes).  One of Dr. Afrin's suggestions was to to find a "compound pharmacy".  They will make your meds from scratch with only the ingredients you can tolerate.  I do this for my Claritin because it has corn starch fillers and lactose monohydrate which is a milk sugar. I am lactose intolerant.   Some insurance companies actually have compound pharmacies as part of their in-network systems...and because you have to have a script for it you may actually come out ahead as far as cost.

Hope this helps.  

Welcome.....hope you find all the support you need here!
Lynda