Wow, what an interesting story. I can relate except that I have not been as creative in forcing doctors to help me. I've suffered for almost four years trying to get help and figure things out on my own. Among other problems, I also have something weird going on with my eye and can post a picture if you are curious.
There are some infectious disease doctors in the Houston Medical Center that are considered experts in parasite infections. Specifically I'm trying to find help from the ones who teach and Baylor College of Medicine that are also in private practice at the Baylor Clinic among other places. My problem is they only take a few patients and it takes a long time to get an appointment just to see one of their general practitioners, who are the gatekeepers to getting a referral to one of the expert infectious disease doctors. I've been working with them for about two months and am making slow progress toward a referral. My one advantage is that I work as a journalist and happen to be a tenacious and educated researcher and it has given me some credibility with my new GP, so far anyway.
You mentioned you were being referred to a doctor in Texas and I was curious where...
But, for heavens sake, keep up the good fight and thanks for sharing your story. I sometimes get really discouraged. What misery.