Hello everyone!

My story begins in August 2009, when I was let go from what was a wonderful job that had seemed really stable and great. In December of that year, my brother (20 years my senior) had a stroke that paralyzed him and left him in a wheelchair. Two months after that, our mom (whom I lived with and looked after) passed away. Then I discovered that my brother had left legal paperwork making me responsible for all of his finances (which by the time I got a look at them were just about hopeless). Add in a few other stressful things (horrible drug reactions, being unable to find a job, starting my own business, being drafted to my homeowner's association, yada yada yada) and by the end of 2010 I was a complete wreck, with symptoms in all bodily systems and horrible anxiety.

Of course I did what any responsible person would; I got myself a therapist, because surely this all had to be psychosomatic and stress related. He put me on valium, and I quickly learned that while it would make the anxiety less...anxious, it did nothing for the dozens of other symptoms I was experiencing. Many ER visits later (one of which even wound up with me being more or less involuntarily committed to a low-security mental institution), and I finally gave up on doctors.

Before I did, however, I did discover that my symptoms got better, much better, when I was on massive doses of Vitamin D. The megadose (50k IU) pills that my doc prescribed were very harsh, but the net effect was one of becoming functional again, so I made sure to get plenty of sun and also to supplement once the sun went away. This got me by for the past three years, but my luck has finally run out - I now react so violently to vitamin D (both supplements and the sun), that I just can't handle it any more.

Naturally, this made me pretty desperate, so I once again started researching like crazy, and finally stumbled onto mast cell disorders as a possible culprit. It was the ONLY thing that explained ALL of my symptoms with a single diagnosis. I got in to see Dr. Singer in Knoxville last month, and he agrees that I probably have some form of mast cell disorder, though he was hesitant to make a specific diagnosis before doing more testing. Well, all the tests he ran came back normal (including the tryptase) in spite of the fact that I'm mostly bedbound and only able to eat five foods (oh, I just turned 39, in case you're curious). Needless to say I'm going to be pushing for a formal diagnosis sooner rather than later.

In the meantime, I'm really struggling with the idea of being on meds for the rest of my life. I've always believed that there are natural cures for everything. But I'm just about worn down to the point that I'm willing to try anything, even pharmaceuticals. I've worked my way up to 5mg/day of famotidine, and this weekend I'm going to start the process of working up to his desired dosage of cetirizine (have that written down somewhere...).

So anyway, that's my story and I'm stickin' to it! Glad to be here, and I hope to learn lots from all of you who have been putting up with this horrible disease for far longer than I have!

Hi Todd, thanks for the welcome!

I have to admit, I was very relieved to finally see Dr. Singer. He was the first doc who actually said "I may have to do some research for you." In fact, he was the first doc who didn't look at me like I had a screw loose when I described how many and how horrible my symptoms were.

I am definitely responding well to antihistamines so far, so I am very hopeful that I will have a major portion of my problems covered once we figure out which ones I need, and how much of them. I know my gut is a mess (I can tell by the pain I have in it - kind of like a cheese grater scraping through my intestines), so antihistamines probably won't be my only treatment, but if we can at least get the worst of it squared away, it'll give me a better baseline from which to work toward finding out and treating whatever else is wrong with me.

Thanks again for the encouraging words, and I wish you good luck on finding the right meds for you!

Michelle