TOUCHED BY LYME: How to get out of the hellhole. An open letter to Albany basketball coach Will Brown and his local reporter
My heart goes out to you, Coach Brown. I know how much you are suffering and I know how much your family is suffering…..But you know what? You don
This is an open letter to Men’s basketball coach Will Brown of the University of Albany, and to reporter Mark Singelais of the Times-Union newspaper in Albany, NY.
Dear Coach Brown and Mr. Singelais:
I just read the article about Coach Brown’s struggle with Lyme disease. As the mother of a teenage girl who has suffered mightily from Lyme and other tick-borne diseases and as a Lyme support group leader, I was first saddened by the article and then angered.
My heart goes out to you, Coach Brown. I know how much you are suffering and I know how much your family is suffering. And I imagine for you, the concept of “family” surely widens to include your team and co-workers. Lyme disease is the pits, and everyone touched by it can be profoundly affected.
But you know what? You don’t need my sympathy. You need some clear-eyed advice about how to get out of the hellhole you have fallen into. Here goes:
You have been victimized—big time—twice over.
The first time was by the disease-laden tick that nailed you. Alas, can’t do anything about that.
The second time you were victimized (and this one is on-going and can be changed) is when you started treatment under the Lyme disease guidelines promulgated by the Infectious Diseases Society of America. Do you know these guidelines are being legally challenged? That they systematically exclude treatment options that have helped untold thousands of very sick Lyme patients get their lives back?
Believe me, I know from personal experience what it’s like to finally realize that the doctors you’ve placed your trust in are withholding the treatment that could make you better. That’s the pits, too. But it’s your situation.
You need to find a doctor affiliated with the International Lyme and Associated Diseases Society (ILADS). This group recognizes that complex Lyme cases require individualized treatment, not just the one-size-fits-all protocol of the IDSA. (Or should we say “one-size-fits-nobody”?)
Now, I want to address reporter Mark Singelais:
Lyme disease is a very complicated, highly controversial topic in the medical establishment. Your story only tells one side of it. You probably didn’t realize you included some very contentious statements that should be balanced by talking to someone on the other side.
For instance, you quote two different doctors saying that most Lyme patients are easily cured by a few weeks of antibiotics. That is the IDSA party line, but there are boatloads of studies showing it to be wrong.
That, in a nutshell, is why Lyme patient groups across the country have vociferously opposed the IDSA guidelines from the get-go. First, the guidelines define the disease so narrowly that thousands of people with Lyme disease are denied any treatment at all. Then, the ones that do get “officially” diagnosed with Lyme are given a few weeks of antibiotics, period. You write that Coach Brown may soon start IV antibiotics. Many people improve with that treatment. Then, their doctors stop treatment after a few weeks (per the guidelines) and their symptoms come crashing back again.
There are better ways. For many people, long-term antibiotics (meaning months or, in some cases, years) have rescued them from death’s door and returned them to normal lives. Other Lyme patients have reclaimed health by using a variety of alternative medical treatments. But the IDSA guidelines specifically exclude long-term antibiotics and a long list of alternatives.
So what does the IDSA propose? That people like my daughter, Coach Brown, and thousands of others who were not cured under the group’s asinine guidelines just sit around and rot? That’s unacceptable to me and I’m sure it’s unacceptable to Coach Brown.
Blogger Dorothy Kupcha Leland can be reached at firstname.lastname@example.org.