Some information about Lyme

When the neurologist called me on September 24th with the suspicion of Lyme, I researched everything I could about this disease. I knew NOTHING about it, not having lived in areas where Lyme was particularly endemic. I had no idea that I was being thrown into a very political disease and that I would have to immediately chose sides, one side being the CDC and the IDSA (Infectious Disease Society of America) and the other side being ILADS (International Lyme and Associated Disease Society). I am on the ILADS side, in part because I didn't get treated immediately after becoming sick.

When you balk at the CDC, you had better have a good reason. I think I do. I've read the scientific articles, I've talked to patients (at lymenet.org), and I think I understand the reasoning behind the CDC and IDSA criteria. The CDC diagnostic tests were meant to be used as surveillance and not diagnosis. The blood tests miss 30-40% of Lyme patients. In a way, I am really lucky that my test was positive. It may not be a pure positive (the test showing active infection was positive and the test showing previous infection is negative). But it was enough to get us to the Lyme doctor and for him to explain a process called epitope switching, which explains the blood test.

I'm also lucky I had Bell's Palsy. A lot of people have vague symptoms, like fatigue and muscle soreness. Bell's palsy is a major symptom of Lyme, and it usually happens before the other neurological symptoms (as mine did). It's much easier to be recognized as a true case of Lyme with that symptom (though I can tell you it felt like an event in and of itself!).

I know some of you have expressed interest in researching Lyme, so these are good resources:
The movie Under Our Skin, which can be seen here.
The book Cure Unknown, which is a fast, easy, and really fascinating read.
Dr. Oz on Oprah & Friends radio program (about 10 minutes) here.
Why treat with long-term antibiotics here.
Connecticut Attorney General investigates IDSA's Lyme position here.

I will keep updating resources that I think are helpful and put them in the sidebar.