I honestly got so despondent, that I started to question the utility of even pursuing a diagnosis. But, then I started reading Dr. Afrin's book (Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity). As I read through his extensive case histories and thorough explanations of mast cell symptomatology and heterogeneity, I have become more certain that this is a route I need to pursue for myself (rather than just give up all hope on ever feeling better or stopping the progression). So, I am on Dr. Afrin's wait list, and will have an appointment in approximately 2 years.
In the meantime, I have a list of things I can try, but I will need a local doctor to help me with some of them. So, after more searching, I got a recommendation for an immunologist in Evanston that apparently works with several of Dr. Afrin's local patients. (Dr. Vivian Chou) She reportedly accepts MCAS as a diagnosis and will work with Dr. Afrin on treatment plans. My appointment will be May 17. I know better than to get too hopeful, but as I've said before, I have just enough hope to try, which is really all you need. You don't have to have any level of certainty or confidence. You have to have just enough to be willing to try the next thing. (I don't buy into the whole power of positive thinking thing. It only causes me heartache from disappointment. I like to proceed with caution, realism, and my eyes wide open to possible outcomes. So, I am aware this appointment may be another bust. But it may get me headed in the right direction, so I'm willing to put myself through it. What more can you really ask of me?)
Anyway, the various things I haven't tried yet to try to calm my mast cells include:
- Continued trials of Cromolyn Sodium
- Switch to brand name Cromolyn Sodium (Gastrocrom), as it may be better tolerated (but more expensive)
- Try the compounded or imported medication Ketotifen, which is a mast cell stabilizer in addition to an antihistamine
- Try switching all of my medications to compounded forms without fillers (another expensive option...and a huge hassle)
- Try adding an H2 blocker back into my regimen to see if I can tolerate it (may also need to be compounded, as medication fillers can be huge mast cell triggers)
- Try the OTC supplement called Quercetin, which has been studied and shown to stabilize mast cells--I would need to try the purest form possible.
- Try a pure non-citrus, non-acidic supplemental vitamin C, which in higher doses, can stabilize mast cells
- Try filtering all my water (drinking and bath water)
- Low dose Doxepin is sometimes helpful (but I have a history of not tolerating serotonergic medications or tricyclics, so I would dread trying it.)
- Low dose Aspirin therapy helps some people, but I currently don't tolerate any NSAIDs, so I would be hesitant to try this, too.