Honestly, whether or not chronic Lyme disease exists is not even a legitimate question to me. Obviously it does, I am living proof. I knew the question would pull in readers who are familiar with the heated political and medical debate.
The controversy on whether or not Lyme disease exists in the chronic form is full of underground information and technicalities. I’ll start by introducing the International Disease Society of America, otherwise known as the IDSA. The IDSA defines standards, regulations and guidelines regarding definition, diagnosis and treatment of all diseases.
For each illness, there is a board of committee members who are thought to have an in-depth knowledge of the disease. Most often, they are researchers, scientists and medical doctors who study the field and work closely with the infection in their everyday lives—they are imagined to be experts of the subject. But experts are the last thing I would call them.
If you’re familiar with the documentary Under Our Skin (if you’re not, I highly advise you watch it!,) then you probably remember a few physicians such as Gary Wormser, Eugene Shapiro, Robert Nadelman and Allen Steere. They are just some of the 14 professionals you can find on the board of the IDSA’s Lyme disease guidelines committee. They have concluded that Lyme disease is curable with a four-week treatment of antibiotics. If one still experiences symptoms after this time period, then they have “post-Lyme syndrome.”
In other words, chronic Lyme disease is not real. In fact, you can find Dr. Wormser referring to patients who experience complications after the four-week treatment as patients who suffer from a “psychosomatic disorder” who in fact never had Lyme disease in the first place.
Because of these regulations, many Lyme-literate physicians do not accept health insurance from a patient. If they do and they disobey the IDSA guidelines and surpass the regulations, the health insurance companies have a right to rebel and refuse treatment. The IDSA has been known to strip away the medical licenses of doctors who treat past the recommended four (to sometimes six) weeks of antibiotic treatment for Lyme disease. This makes it extremely difficult for chronic Lyme patients to find treatment, and for that matter even receive a quick and proper diagnosis.
This summer, after a month and a half of insurance-approved intravenous antibiotic treatment, my health insurance company turned around and decided to refuse coverage. Here I was at 19 years old with college tuition loans, fighting a chronic illness and now with thousands of dollars of unexpected medical expenses.
I took matters into my own hands, and did some research on human rights and federal documents to find some sort of loophole that could protect me. This is when I came across a declaration that proposed relationship guidelines between physicians and health insurance companies.
I devastatingly learned that physicians are allowed to accept financial incentives from health insurance companies to not diagnosis or treat specific illnesses, or to reduce treatment length. A light bulb went off in my head: Lyme disease becomes extremely expensive to treat; therefore all of the doctors on the board for the IDSA Lyme guidelines are being bribed by health insurance companies to misdiagnosis chronic Lyme and refuse treatment. And what better way for these physicians to do so than to create guidelines that make such actions illegal for all medical doctors?
Now I am no lawful scientist or researcher, but it becomes very clear as to how all the pieces of the puzzle fit together. The guidelines deny the existence of chronic Lyme when it is undoubtedly an actual disease, because Lyme disease is enormously expensive for health insurance companies to compensate for. The companies offer the committee members financial incentives to skew the guidelines into concluding that such treatment is illegal, therefore it’s a win-win situation for the board members and the insurance companies and a boundless, unbearable struggle for the chronically ill Lyme disease patients.
The following link is to the IDSA Lyme disease guidelines: