Well I just returned Tuesday night and am trying to get over the exhaustion of traveling to Miami but wanted to at least post a quick note about my visit. My appointment was on Monday - I met with Dr. Chahine (?) for probably an hour or longer to go over my history. I had sent many records ahead of time but he wanted to hear it from me which I appreciated. Then he sat with Dr. Klimas to discuss my case before they called me in. There were 3 other patients there that day. One woman was just getting saline and I think 2 others were having their exercise tests before meeting with Dr. Klimas. I did not have any other tests during this trip since I have already had autonomic testing (and tilt) and am unable to do an exercise test at the moment because of some joint issues. The nice thing is that I am not a 'clean slate' by any means as far as testing goes because of long-term steroid use and other issues but Dr Klimas and Dr. Chahine were very willing to work with me as is. So when I met with Dr. Klimas we conferenced in my PCP which was great so she could hear everything directly from their mouths and I didn't have to try to explain everything. Really right now we aren't making any changes until they get the blood work back in a month. But the big things we discussed were sleep, immune system issues and infections. It will be interesting to see what my blood work shows while on the prednisone. Nancy did say that I could take immunovir and/or ldn while on prednisone so that was good to hear. She did say that LDN is not an immunomodulator and that there will be a paper coming out soon by somebody who finally pinned down the mechanism behind how ldn works. I will be interested to see that when it comes out. A few words about XMRV- Dr Klimas is keeping samples of her patients blood to test once there is a test she thinks is good enough. I did ask her if she thought xmrv was going to pan out and she said she did think so but at a lower percentage than what was originally reported. After my appointment I went out for lunch and then went back for some saline - which really did not end up helping me any. I suppose that is individual but I had assumed that it would since it seems to help so many people and I have such low bp. I was hoping it would have helped. I will have a follow up call with Dr Klimas in about a month to go over my test results. I will have to go back in about 6 months after that for follow up blood work. Overall it was definitely worth the trip and I would encourage anybody who is considering a trip to Miami to make it! Of course they do not take insurance so that is disadvantage but if you can swing it it's worth it!