Visit to Vanderbilt

Monday was a whirlwind of a day. The drive from Rome to Nashville was beautiful! I loved seeing the mountains! We made it to Nashville with a couple of hours to spare. We drove down Music Row and ate lunch downtown. We also drove by the Belmont Mansion and Belmont University. 

The Vanderbilt Allergy Research clinic was next to the football stadium! 

We met with the fellow and he got my history and long lists of meds and symptoms. He then went to meet with the doctor/professor to discuss what they thought. They were glad I had printed out the 387 selfies from the past 11 months. They really showed the different problems that I'm having and have had in dealing with this. The fellow had not seen hives (urticaria) or swelling (angioedema) like mine and almost had us convinced that they may come back with an entirely different diagnosis. But that is why went to Vandy, for the second opinions!

When we saw the doctor/professor, he was very knowledgable about CIUA. He said that my diagnosis from here in Rome was correct and that he would've done the same medication therapies. He was surprised that the Xolair injections were not working well for me. He has patients that have overnight improvements. He also agreed that my symptoms are atypical. He also knew of the Fat, Sick and Nearly Dead documentary and had even done 10 days of juicing himself! He said if I wanted to do a juice fast, that he was fine with it. 

We discussed other medication options. Cyclosporine came up. My personal last resort. It's a powerful drug. It is an immunosuppressant. It wipes out a person's immune system. They often give it to transplant patients before they receive their transplant. Teaching a class full of gooey kindergarteners doesn't really create a clean, sterile, germ-free environment. In fact, it's probably the exact opposite. ;) That was my main reservation with cyclosporine. But I will be receiving half the dose that they give to transplant patients. I'm going to do a four week trial and see if it makes a difference. 

I was supposed to start them as soon as my labs were back from Vandy. I had not gotten my "you have a new prescription" text from Kroger as of this morning, so I contacted the Vandy doctor. My labs didn't come back like they'd hoped. My liver enzymes were slightly elevated. And there may be something underlying or it could be one of the now 14 prescriptions I take daily. They don't want me to start the cyclosporine until I get further tests done. So I called regular doc - headed there in the morning. Calling immunolgist soon to move up my appointment with him. 

I don't like this curveball. But, I'm learning that the unicorns do what they want, when they want. I just wish they wanted to go away!! The Vandy doc said that even if the cyclosporine doesn't work, people with my condition go into remission. After 1 to 5 years...