Hi Bernetta,

  I'm sorry you're going through this awful pain!  I don't know about the doc in Orlando, but maybe someone else will jump in.  There is a mast cell researcher named Theo Theoharides, from Tufts, who makes a supplement formula (I'm not selling this, just am a happy user) called Algonot.  He has several other formulas, too, that might address the inflammatory stuff you've been experiencing.  His website is:algonot.com  You can read about the products, but I find algonot to be helpful to me.  It should be taken with food, however.  If you don't want to take the algonot, you might want to try quercetin (1000-1200 mg./day).  Also have with water and food.  It's a bioflavonoid that really helps with inflammation.  Takes 4-6 months to see a difference, but it's been very helpful to me.

If you want to post your medication dosages, people will be able to see if you're on enough meds to have an effect.

Hi Susan,

  Others will have to answer definitively about the sulfates.  I don't seem to have a problem with it.  My understanding is that it's sulfites that cause a problem for some people (I'm not one of those), but there may be some who have trouble with sulfates, too.  Algonot also includes components derived from shellfish, which could be problematic.  I would guess that sulfate might be a problem for some, but not all people with masto.

  If you have any doubts whether it will trigger you, another approach would be to try Quercetin alone, starting at a low dosage and working up to 1200 mg. a day, all taken with water and food.  I know others who only take quercetin and have had great results from that.  That's how I started, too.  The amazing thing for me is that I did have a great reduction in inflammation and found that I could do things physically that I haven't been able to do in 4 or 5 years.  I worked in my garden for 6 hours on a very hot, sunny day and had no effects or after-effects, a virtual miracle!  Do talk with your doctor before you try anything new.  Sometimes they'll let you come in and try something in the office.  I've been known to go to the ER and try a new medicine in the waiting room.  I stay for a little more than an hour (without checking in) and then go home if nothing happens!  Not recommending that, however!

That's because it IS trial and error!  People with MCAD/MCAS are similar, but not the same.  Still, it is believed to be an inflammatory process and anti-inflammatories do help a lot of people.

If you find a med that works or helps, do let us know!