A look inside the complicated politics of Lyme disease.
The investigation also determined the IDSA had suppressed scientific evidence, used insufficient trials and excluded studies that addressed chronic Lyme and the benefits of long-term antibiotic treatment.
The IDSA agreed to "a one-time special review" of the guidelines in order to end the investigation. So far no date is set for the review. In an email, a spokesperson wrote, "These patients are clearly sick with something. But the best medical evidence available doesn't show that it's Lyme disease."
The antibiotics from the maxillofacial specialist got me on my feet the next day. I wasn't exactly running yet, but I was able to walk steadily.
When I saw him again two days later he confirmed there wasn't anything he could do. He advised me to find a neurologist.
Multiple sclerosis and trigeminal neuralgia diagnoses were thrown around.
That day I called neurologists and tried to make an appointment. I'd learned to communicate by holding the palsy side of my mouth shut with my fingers and sort of yelling through the other side. I was offered appointments in October.
This wasn't a pap smear. By the time you need a neurologist, don't you pretty much really, really need a neurologist?
I got an appointment for the end of July.
Meanwhile, I felt zippered into the wrong body--an inferior one with broken parts. Like I was maneuvering the Sigourney contraption in Aliens, a Herculean effort of precise movements just to open a Diet Coke or pry the lid off a pill bottle.
When the immune system or an antibiotic kills bacteria, the bacterial death releases a toxic gas that also makes you sick.
It's called the Herxheimer's (Herx) effect. It's why people sometimes get worse before getting better while on antibiotics and why symptoms cyclically wax and wane in patients with chronic Lyme.
I began to venture out a bit. I started going to my acupuncturist three times a week. Acupuncture was the only treatment I could find to help the palsy. Kara, my practitioner, would stick needles all over my face and then cinch metal jumpers wired to an ancient-looking machine and blast electricity into my facial muscles, like jump-starting a car.
In six months I was scheduled to be a bride.
According to the CDC, Lyme disease is the fastest-growing vector-borne disease in the country. More than 95 percent of all reported vector-borne illnesses in the U.S. are Lyme. Outside of the nonprofit turnthecorner.org (run by chronic Lyme patient Staci Grodin), there's not much in the way of organized Lyme disease training for physicians.
A doctor can do residency in Chicago, where Lyme disease is practically nonexistent, and accept a job at a hospital on the mid-Atlantic coast, where Lyme is concentrated, completely ignorant of the treatment and detection of an epidemic that, left to progress, can cause irreversible neurological degeneration.
What almost all Lyme disease sufferers have in common is that despite exhibiting a roster of classic symptoms--headache, inflammation, sensitivity to light and sound, loss of motor skills, loss of memory, blurred vision and in my case, facial paralysis--we're often left insufficiently treated as spirochetes drill deeper into our central nervous system.
I didn't have the supposedly telltale bull's-eye rash. Lyme is a multisystemic neurological disease that impacts the organs--not a dermatological inconvenience. Estimates for the frequency of rash accompanying infection swing a wide 40 to 90 percent.
As outlined in Cure Unknown, public misinformation about the frequency of the bull's-eye rash illustrates the doomed logic typical of the rickety scaffolding the IDSA's guidelines rest upon. Tests that recruited patients with the rash determined that the rash was a distinctive symptom of the disease.
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