If you're here, I'm guessing it's because you either have Lyme Disease, or know someone who has Lyme Disease, and are wondering what to do. You also might have already done some online searching about the disease and have learned that there is a controversy that has been around for decades about whether or not the bacteria that causes Lyme Disease can persist past the IDSA (Infectious Disease Society of America)-guideline-recommended 3 week course of antibiotics.
If you do not know about the controversy, here it is in a nutshell: The IDSA believes that the bacteria that causes Lyme Disease can be killed off with 3 weeks of antibiotic treatment, with an additional month of intravenous antibiotics if the bacteria infects your central nervous system (CNS) and brain. Other doctors, including most recognizably those belonging to ILADS (International Lyme and Associated Diseases Society) believe that 3 weeks is inadequate treatment, a month of intravenous antibiotics is not long enough if it infects your CNS/brain, and that longer courses of antibiotics are needed to treat the bacterial infection until it is gone.
Bascially, IDSA wrote treatment guidelines for Lyme Disease that make it look like a bad sinus infection, and ILADS and other doctors decided Lyme Disease was serious enough they need to treat it more like it is tuberculosis.
Big difference. HUGE difference, there.
More about this controversy can be found online through the links at the bottom of this blog as well as through typing in the keywords "Lyme controversy" into Google -- I am not going to get into it in greater detail here and now.
I do mention this controversy, though, because it forms the basis of this blog and why I am here, writing this: I have a lot of unanswered questions about this disease, its treatment, the patient community response, the research conducted, and the politics around it.
Obviously, for me it is personal and the $25,000. question is: Can I ever cure this disease, or will it always be with me, regardless of the cause?
And the answer so far is: I don't know.
I have been learning to live with my condition over the past several years, and sometimes it's easier than others. And it is as if I have been placed in a seat and locked in, and sent on a rollercoaster ride, and not told when it's going to end. I only know I'm in the middle of the ride right now.
So I am writing this blog as part of my effort to understand what has happened to me, and indeed, what has happened to others. I am going to be writing about my perceptions of Lyme treatment, research, specialists, the patient community, Lyme in the media, and more.
Notes on this blog before I post anything else:
- I moderate all comments. I do this to avoid spam and also behavior which either violates the TOS or is significantly off-topic enough that it doesn't belong here. If I am pretty sure you are not a bot, I may respond.
- I do have a strong opinion about certain topics, as many people do. I may say things here that others will disagree with or be offended by when I do not intend offense. Rather than insult me, intelligently discuss my opinion and yours. Ad hominem attacks are not welcome.
- In fact, you might just want to refer to and apply Carl Sagan's Baloney Detection Kit when getting into a discussion anywhere online - it's a pretty useful tool.
- Because I am not well and my ability and functionality waxes and wanes, I may not post and respond on a regular basis. I am doing the best I can to work with what I've got - please be patient (thus my label for "Followers" was changed to "The Patient Minion").