Hi all,
Thanks so much for your kind and wise posts (I'm listening, Lisa, and I know you're right - - I've always been a high-energy take charge Type A and it's sure hard for me to slow down and let others do for me, but I'm working on it!).  I apreciate so much everyone's suport - - it really helps.! Now it's time for an update (some of you who are on other groups/forums with me will have heard this already):

Had my followup appointment with the new allergist/immunologist.  The test results showed (drum roll here....) all normal/negative - -  EXCEPT that the 24 hour urine n-methyl histamine came back very high.  For the latter, she said my results showed 60% more histamine than the upper limit of normal.  So with my history/symptoms, hyperadrenergic POTS link, and response to antihistamines, I considered that pretty diagnostic of MCAD, but the doctor said she wasn't sure because of the normal trytase, and then she mentioned something about it maybe being basophils and eosinophils as well as mast cells.    I don't know what her latter comment meant and I decided not to buck her that visit and tell her that indeed you don't need a high tryptase (according to my reading and learning from so many of you) because she was going to treat me the same anyway.  But I'd really like an actual diagnosis so I will likely contact Castells or Afrin at some point and see if she will consult with them (I can't easily travel and do not think my medical insurance will cover an out of state doc, but need to check still).  I'll wait and see what her actual written report says, plus I've asked for test results copies, but I got the impression she is more knowledgeable in mastocytosis than MCAD/S.  She encouraged me to try the low histamine diet but I told her I was eating so few foods it was definitely already that!  I asked about Gastrocom/cromolyn sodium, and she wrote me a prescription.  I am trying to decide whether to try to order it through the regular pharmacy or the compounding -- need to price it out and just haven't gotten to that yet (but I will first thing Monday). She said she saw no need for a bone marrow biopsy right now given my normal tryptase and the fact that I was responding to meds.

So my current meds/supplements are:

Morning - Allegra 180 mg, Atarax 25 mg, Zantac 150 mg, Carlson's vit D drops - - will be adding 100 mg cromolyn sodium.

Lunchtime - Atarax 25 mg - - will be adding 100 mg crom.

Dinner -  Atarax 25 mg, Singulair 10 mg, Multivitamin (dye-free; from the health foods store) - - will be adding 100 mg crom.

Bedtime - Atarax 25 mg, sometimes Magnesium (Calm brand) - - will be adding 100 mg crom.

Anytime needed (rescue med): 25-50 mg liquid (dye-free) Benadryl, sometimes also another Atarax. Have not had to use Epi-pen yet but carry it with me in case.

I really am doing better than I was those weeks back when I first posted, thank God, as I was feeling quite desperate at the time. So I know the medication has helped - - still, I'm having some continuinng problems. I have good days where I feel nearly normal again, and bad days where I really don't! Some symptoms have improved and some haven't.  But I'm moving in the right direction I hope...  
Thanks again,
Carol from Colorado