Lyme disease is one of the hardest infections to treat.
This is her story:
I saw my neurologist today. She told me “no one wants Lyme disease.” She was referring to doctors, though it is an appropriate statement on many levels. I’ve been trying to get in to see the infectious disease doctor here. The infectious disease (ID) society is the overriding medical body who makes Lyme recommendations for diagnosis and treatment.
When I call the receptionist at the ID doc’s office (his name is Sky Blue, he he), however, she makes even getting into see him a nightmare. I have been trying to make an appointment for two months. *They* aren’t sure he treats Lyme (uh, he should). *They* told me to get a referral. I did. *They* still weren’t sure the doc could see me. *They* told me someone would call me after talking to him.
*They* didn’t. My neurologist said no doctor wants Lyme.
I can understand.
Lyme disease is so full of controversy. On one side is the IDSA (Infectious Disease Society of America- though don’t let the “America” fool you; many other countries follow their guidelines). They post that Lyme is an easily diagnosed and treated disease. They believe that even if you have late stage Lyme (which causes neurological problems and arthritis-like symptoms), it is treatable with four weeks of antibiotics.
On the other side is ILADS (International Lyme and Associated Diseases Society). They believe that Lyme is much more complex and is very difficult to diagnose and treat. They argue that many people with late stage lyme are “seronegative” (meaning their bloodwork for Lyme is negative). They also believe that the Lyme bacteria is present in several forms (spirochete, cyst, L-form). They believe in long-term, high dose antibiotic therapy (meaning a year or more). The IDSA maintains that there are no empirically sound studies showing that long-term antibiotics are more effective than a placebo. ILADS and associated organizations say that those studies haven’t studied true long-term therapy (i.e. twelve weeks instead of a year or two).
There are many patients who believe that the IDSA is in bed with the insurance companies, denying treatment for chronic Lyme beyond the 28 day criteria. I find this argument to be a bit bogus considering insurance covers things like chemo without a grand conspiracy [this isn’t to say I don’t think there are legitimate problems with our insurance system!]. But I do think the IDSA has blinders on and seems unwilling to say that it’s possible that they don’t know. I think they should encourage more studies, more science rather than telling the other side (a very vocal side) to fuck off.
I fall somewhere in the middle. I believe in science. I believe in studies. I also believe in medicine that hasn’t been proven. My dad’s life was saved because of a clinical trial for recurrent lymphoma. The medicine did NOT get FDA approval. But it cured my dad. Above the science, above the controversy, I want to get better. I am 27, and I want to live a healthy life. While it might sound nice, sitting around my house while it gets messier and messier watching old Showtime television series isn’t the way I like to spend my time. My bed and I have a relationship that is frankly a bit unhealthy (which reminds me I should probably wash my sheets a little more often). I want to write. I want to build brands. I want to engage. I don’t want to curse my computer screen because it gives me double vision. Frankly I don’t care about the ILADS/IDSA bullshit.
I just want my life back.
Which means I have to care. I have to do a lot of research. I read a lot of journal articles and scientific papers (usually zoomed in to 200% or with the font on the internet increased). I try to make informed decisions. I come up with my own hypotheses. I’m pretty sure my doctors hate me because I have more theories than they do and seem maybe slightly crazy with a hint of medical OCD. My labs at the moment are fine. I look completely healthy on paper. Except I’m not.
And no one wants me. If the doctors treat without confirmed lab tests (which were supposed to be used for surveillance not diagnosis) they risk their medical licenses (google Dr. Jones). The doctors seem afraid of this as as a diagnosis (but are free to give me migraine meds without a confirmed lab workup!). To see my doctor in Seattle I had to sign a form that I understood this was an experimental treatment protocol. That doctor continues to treat me. And I probably shouldn’t have gone on this expensive medical dead-end. But the problem is when things happen here (maybe unrelated to Lyme) I don’t have anyone to go see, which makes me a thousand times more likely to go to the ER instead of just calling my primary care doc.
I know this is confusing. I tried to explain it as best I could, and I explained things as I see it (so if you disagree, this is how I view the controversy).
If you have more questions, I can try my best to answer them.
Thank you for your posts on Lyme Disease. I have shared them with two friends who are battling Lyme AND battling being swapped around between doctors like they have 4 heads and are bleeding from their eyes. They found your words helpful.
Lyme disease is a total jerk!
Still can’t believe that there’s no one set of treatment plans. Just wow. I’m sorry that you’re suffering.
What sort of symptoms do you have? I heard that the symptoms could be manageable to awful.