gracietiger - If you haven't already, try to see (or order on line) the DVD Documentary "Under Our Skin", which really puts all of the problems regarding testing, treatment, insurance, politics, suspect IDSA LD panelist, etc. into perspective. Another excellent resource is the book, Cure Unknown, by Pamela Weintraub. I haven't been able to read or retain ANYTHING for years due to LD symptoms (can't bear the reading light, can't read and retain anything, etc.) but I did manage to get through this book. It completely lays out the Lyme disease landscape of problems.
The majority of IDSA LD panelist have been found to have possible conflicts of interest with regard to LD. 9 out of 14 are invested in LD testing, LD treatment, writing LD guidelines for insurance companies, and LD vaccines. I believe they wrote and continue to write horrendous guidelines for LD while holding out for the big payoff. I hope their big payoff is a gigantic class action lawsuit against the IDSA and each panelist individually. Let's see how they like it when their lives are ripped out from underneath them and they can no longer pay their bills or practice their profession or feed their families or send their kids to college and then for the cherry on top - they lose their insurance coverage.
The problem with the rest of the doctors out there is that they rely on these guidelines for treatment.... they're like gospel and many doctors do not question the guidelines.... even when they know they're wrong.
Another side to add in is that LD may have been treatable with 2-4 weeks of oral doxy back in the 70's, but the ticks are now carrying more diseases or "co-infections".... and the writers of the guidelines just don't want to admit that it's time for the guidelines to be updated.
When HIV/AIDS first appeared in the early 80's, those patients also went through this... they had to convince doctors that something was going terribly wrong, it struck the gay community first and the hardest... so they had that prejudice to overcome.... medicines were available, but not administered.... but when people started dying... and celebrities got involved... they got their medicine even before FDA approval. Now, one of President Bush's greatest accomplishments (in my humble opinion) is the HIV/AIDS initiative in Africa. The US has supplied Africa with affordable (I think this honor goes to former President Clinton) HIV/AIDS medications in record numbers. And all of this has come out of a gay community dying from a disease that no one had a name for and activist that began PROTESTING and DEMANDING attention for testing and treatments.
People with fibrmyalgia, CFS, Epstein Barr, etc. were ridculed for years. Now those same "afflications" are on record as REAL illnesses and accepted in the medical community.... they even have their own diagnostic codes and standards for testing and treatment.
We'll get there... obviously we'll be getting there the hard way... but we'll get there.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has. - Margaret Meade