Hi Josh!

I'm so sorry you are dealing with this. Pretty much all of us here can relate to your frustrations. I won't strain your mental focus by telling you my whole story - anyway it would strain mine too . . .

I ended up going to Mayo's LC Clinic. It took several months to actually get in, but it was absolutely worth the wait. (I figured I was going to be sitting there anyway, so I might as well be waiting while I was sitting . . . .) They know as much about LC as pretty much anyone else around. The doctor who met with me, Dr. Grach, specializes in dealing with the kind of things we face. She wrote up a document about 16 pages long, summarizing all the most current treatment options for various symptoms and symptom groupings. (The intent of the document is that you take it back to your local doctor and tell them about her findings and recommendations, and together you and your doctor work out a plan. ) She also recommended I go through their 8-hour class on LC and the post-class consultations with a wellness coach and the nurses. This was also very valuable in giving me everyday strategies to cope with and minimize my symptoms. If the class has been all there was, it would have felt patronizing, but in conjunction with the many recommendations for medicines and supplements, it was helpful.

She also recommended additional testing and meeting with several specialists at Mayo. The most helpful was a neurologist who also specializes in LC/ autonomic dysfunction/ chronic fatigue/ neuropathy. The neurologist was able to correctly diagnose what was going on with my autonomic dysfunction, and that helped the physical therapist I was seeing locally know how to help. That doctor also gave me additional recommendations to help with some of the issues she discovered in testing and in talking with me.

I've also participated in a number of Mayo and Mayo- connected studies. I'll be honest - I don't think the studies themselves will help you. They are pretty much trying anything any researcher thinks will work, and most of the studies are placebo-controlled, so you might go through the whole study process and end up with the placebo. In my opinion, having done both, I think at this point in your journey you're better off trying to get into the Mayo LC Clinic. In my own case, I was finding that though my local doctors were very kind and caring and sympathetic, they really had no idea what to do for me. When I went to Mayo and came back with a plan, they were more than happy to help me try the different recommendations and see what worked for me. (Oh, and in case you are wondering, I live in the Denver area. I am nowhere near Mayo and it was a royal pain having to go there - but it was worth it.)