A look inside the complicated politics of Lyme disease.
The IDSA is the incumbent power. They authored the official, sacred Lyme disease guidelines at the root of the clash; these guidelines regulate diagnosis and treatment. They're the ones health insurance companies use to deny coverage for treatment outside narrow definitions and to indict physicians who prescribe antibiotic treatment beyond their purview.
Dozens of doctors have had their medical licenses challenged or revoked for practicing outside the guidelines.
In short, the IDSA's perspective on Lyme is that it's easy to detect and cure--and that chronic Lyme doesn't exist.
The guidelines state: "There is no convincing biological evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic subjective symptoms after recommended treatment regimens for Lyme disease."
ILADS, leading the fight against the guidelines, charges that the guidelines don't consider patient testimony or clinical evidence that many extremely ill patients actually respond to prolonged antibiotic treatment.
Established in 1999, ILADS is a diverse group that includes primary care clinicians, researchers and patient advocates. They charge that the IDSA guidelines ignore patients with persistent symptoms of Lyme disease, and unjustly punish doctors for prescribing longer-term antibiotic treatment.
The 14 IDSA members who wrote the guidelines are the old guard who, if they admit their initial published reports of a simple disease are wrong, sacrifice professional pride, ego and--according to recent investigations--financial gain.
In the introduction to Pamela Weintraub's Cure Unknown, a new book investigating the Lyme wars, Hillary Johnson, author of Osler's Web--the definitive book on chronic fatigue syndrome--eloquently distills the dispute as a "biomedical reenactment of the Hatfields and McCoys."
I don't really remember the two days after I left the emergency room. I lay in the dark in my bedroom soaked with a fever, barely conscious.
I have faint memories of Jesse slipping orange Jell-O, painkillers and vanilla Ensure through my locked jaw, and of puking, sweating and shaking a lot. At work they expected me back recovered from a little jaw malfunction. I wasn't conscious enough to even think about that.
I don't remember how, but at some point Jesse made an appointment for me with a maxillofacial specialist I knew from having had a root canal a few years back. We didn't know where else to turn.
Jesse dragged me out of bed for the appointment. I looked in the mirror and saw another person: a face swollen and sore with knots and lumps. The temple lump had grown to Flintstones proportions. A vein in my forehead bulged like it was going to break. Parts of my face weren't moving. The right side was paralyzed. It was like staring at a stranger and trying to wiggle their eyebrows with your mind.
The doctor was perplexed. He was kind. He had no idea what was wrong, threw a week or so of antibiotics at it and told me I was too swollen to examine. I was to come back in two days.
The one thing almost all experts agree on is that early detection and early treatment generally prevents progression into more severe neurological problems. Common first-stage Lyme symptoms include flu-like symptoms such as fever, headaches, fatigue and joint pain. Second-stage Lyme disease advances into neurological complications such as numbness, all-over pain, Bell's palsy, hallucinations, cognitive impairment, sleep disorders and nerve damage in the arms and legs. Advanced symptoms include serious neuropsychiatric symptoms such as severe depression and rage.
In the tidy (virtually patientless) world of the IDSA, evidence means scientific, diagnostic proof detectable in a lab and quantifiable on a chart. Patients are considered unreliable data. Clinical observation is ignored.
Odd strategy for a disease that doesn't even have a reasonably accurate diagnostic test. The sensitivity for the two standard diagnostic tests ranges from 37 to 71 percent.
Responsible for Lyme's hometown state (it was discovered in Old Lyme, Conn., in 1975), Connecticut attorney general Richard Blumenthal launched an unprecedented antitrust investigation into the IDSA in November 2006.
On May 1, 2008, Blumenthal announced the investigation had determined that some of the 14 experts who had approved the IDSA's guidelines received consulting fees, research grants and stock ownership from drug companies and other businesses with stakes in the treatment and diagnosis of Lyme disease.
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