You can choose to start the ZZ combo sooner if you’d really like to, but if you want to show ‘proof’ in your lab tests, you really need to catch yourself very close to an attack of some sort. Imagine taking an allergy pill before being exposed to a known allergen. Your reaction will not be accurate or even usable data, in that case. Some people choose to go off of meds before having mast cell testing done so their doctors can get a better idea of what’s going on without the use of pharmaceuticals.
Most with systemic infections (to my knowledge) need much more aggressive treatment. This is not to say those with MCAS don’t need the same treatment, but they don’t seem to need as much of it (yet). Personally, I don’t see a problem in treating MCAS and mastocytosis the same because I really believe that left untreated or UNDERtreated, MCAS will probably get worse. That’s just my opinion, and I’m no professional. My symptoms have progressed greatly, and I’m terrified that if I don’t stabilize my mast cells soon, I will keep adding on to the allergy (and medication) list.
As far as getting a diagnosis, a positive response to treatment is enough in itself. You may have to discuss this with your doctor in detail or even jump around to find someone to clinically diagnose, but the way I see it – even if you don’t have an official diagnosis, why not take the ZZ combo anyway, if it works? So many of us self treat. It’s a shame, really. I have caught myself saying ‘I can’t wait to get out of the hospital so I can diagnose and treat myself.’
Good luck.
Keep us posted.
Jen