what's next?

The buffered salt tablets I mentioned in my last post are still helping with orthostatic intolerance symptoms, but other areas are still a huge problem, particularly the poor sleep and malaise after exerting myself. For example, last week I went to the pool, swam lightly for about 5-10 minutes only, got out and read for a few minutes, then went back to the house. By the time I got home I felt terrible, completely whipped out as if I had just run a marathon. I know this is not normal. It's hard to describe this feeling of exhaustion it's so intense. It's as if the body just stopped making energy altogether. As one person put it, “It feels like somebody flips a switch and every sense of well-being disappears. I have to go lie down, and then I still feel like I have to go lie down!". The fatigue is so bad that there is no activity that is doable. Watching TV is out of the question as concentration is exceedingly difficult. For more info see this excellent article: Unraveling Post-exertional Malaise.

Anyway, I've come to the conclusion that I've probably done about as much as I can on my own, and it's time to see a specialist. My two leading candidates are Dr. Nancy Klimas in Miami, FL, or Dr. Charles Lapp at the Hunter-Hopkins Center in North Carolina. Seeing either would be expensive (probably a couple thousand dollars all told including travel, doctor fees, lab tests, etc), so right now I am just saving up. They both have been treating ME/CFS patients for over 20 years and are among the most experienced in the field. Klimas recently opened a new private clinic in addition to her practice at the University of Miami. They also require a referral from your Primary Care Physician. This week I went to see my PCP to request a referral and he refused, saying he didn't want me to "waste my money". He reasons there is no official diagnostic test for ME/CFS nor any approved treatments, so what's the point? The point is that the illness is very much treatable, if only he would open his eyes and learn more about the condition than the tiny paragraph he may have seen in his medical texts.

So I don't know what I'm going to do. I absolutely think seeing one of these specialists is the next step, so if my PCP now won't refer, I will probably have to find another who will. It's unfortunate that I have to use my already limited energy trying to find a supportive doctor.