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Allergist/immunologist Appointment Today


POTSMama
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Well, I am still ruminating on the appointment I had today with my new allergist/immunologist (2nd visit, to go over test results). Overall I think it went well. Here's the highlights:

1) She said that I had "60% higher than the upper limit of normal" levels of n-methyl histamine in the 24 hour urinalysis (which was taken during an episodic period). She said that this finding explains my symptoms.

2) She said that the prostaglandins and leukotrienes were not elevated.

3) She said that the tryptase, taken during the same general period as the n-methyl histamine, was not elevated

4) She said that the genetics did not reveal any abnormalities (negative for C-Kit mutation, etc.)

(there were some other tests she mentioned but these are the ones I recall; basically everything was normal except for the histamine).

So she said that the good news is that this indicates I do not have mastocytosis, myeloproliferative disorder or hematological disorder, but that the high histamine clearly indicates that something aberrant is going on. I asked if she thought that meant I had mast cell activation disorder and she confused me by commenting that since the tryptase wasn't high, she didn't think it was just mast cell degranulation but maybe that also the basophils and eosinophils were a factor (I need to do some reading to see what that means - - this is out of my knowledge zone... anyone else have thoughts on that? - - does it make sense?).

She spent a great deal of time talking to me about how I'm doing on the new meds regimen, and what my concerns are. I told her that my main concern was that I couldn't eat very many foods without reactions and was still losing weight, and that I thought the missing ingredient in my meds regimen might be a mast cell blocker (as some of you here have told me). She agreed and wrote me a prescription for cromolyn sodium (Gastromcrom). She did NOT want me to try any other meds right now or too many new foods at once, as she did not want me to change more than one thing at a time and to do changes slowly so I don't compromise my newfound relative stability of symptoms (e.g. my smell sensitivity has decreased about 50% since I've been on Allegra and Singulair and cut back on the first generation H1 blockers). She also said that it was important that I recognize that emotions can be a trigger too, and to that end she suggested I consider breathing exercises, meditation and yoga if I'm feeling stressed (which I'm already doing as much as time allows; I agree that stressing makes it worse so I'm working on that). She gave me a list of high histamine foods to avoid, and told me to come back in 2-3 months, but call her in the meantime if I had concerns or question.

So I guess it's a good start - what think? And what about this notion of basophils/eosinophils? (I do think her insistence that tryptase has to be high is because she is not familiar with newer research showing tryptase is not such a great mediator marker, but she seems reasonably knowledgeable on other things including POTS). Even though she won't put the diagnosis MCAD on right now, she seems to be using the same treatments as if that was the dx so I'll run with that for now....

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