Lyme, which is the underlying infection causing my PANDAS, has an asterisk. No, there is not “really” an asterisk beside the word, “lyme,” in medical literature, test results, and so forth. But the asterisk exists in the minds of the medical establishment (i.e. the CDC, NIH, AMA, etc.) Why? I can think of two reasons. First the diagnosis of lyme is not straightforward. And second, the disease course is hotly debated.
Lyme Testing. . . . if only it were that simple. I have more to say on a later day. In my case, the results indicated the following current infections: Borreliosis (the technical name for lyme) plus ehrlichiosis (another tick-borne illness) and anaplasma. [ Other Past and recent infections I have — and no one knows for sure how recent– include EBV (“mono”), cytomegalovirus , HHV-6, mycoplasma pneumonia (“walking pneumonia”), bartonella, and get this— West Nile. Wow. West Nile ?????]
Lyme, the Disease . . . . the big debate in the medical community is whether or not lyme is a disease with a clear, “start” and “finish, ” or whether lyme can lasts for months or years, even with treatment. Most medical professionals, at this point, treat lyme as a “clear start and finish” disease with a short course of antibiotics upon the discovery of a verifiable tick bite and subsequent “bullseye” rash, indicators of an “acute” infection. At present, the CDC’s recommended testing and treatment protocols support this perspective on lyme. However, there is a big, massive lawsuit underway to challenge testing and treatment of lyme as only an “acute” infection. (I hope to write about the lawsuit in a future post.)
The opposing view would say that lyme is a tricky infection as it can “hide” in the body and go undetected for months or even, perhaps, years. Instead of an “acute” infection, the idea here is that lyme can exist as a “chronic” disease. This camp believes that someone with “hidden” lyme can have a relapse when other viruses or bacteria attack the body, such as the flu. Those in the medical field who believe in the chronic manifestation of lyme treat it with longer- term courses of antibiotics, and perhaps, supportive/ integrative therapies that focus on nutritional supplements. Recovery is possible; it just takes a lot longer.
When I say that I have lyme disease, especially when talking to medical professionals, I explain that I have tested positive with both CDC-approved tests and specialized-lyme testing. In other words, my current health situation points to both acute and chronic lyme infections.
Categories: The story continues