Lyme Lives Here

Doctors and lawmakers alike take a stand against this misunderstood disease permeating Southeastern Pennsylvania.

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It’s far more difficult to latch onto a doctor who will diagnose a patient with Lyme—especially chronic Lyme, which many in the medical community say has no scientific basis. Commercially available tests miss the majority of patients with the disease. A two-tiered process begins with a screening test called an ELISA, the first widely used screening test for HIV. If that’s positive, a Western blot is next. A Johns Hopkins University study revealed that the two-tiered method missed 85 percent of infections. Lyme activists advocate regular screenings and clinics to detect the disease earlier, improve diagnosis and treatment, and reduce its impact and expense.

There’s no vaccine or single cure for Lyme disease. Rather, it’s an emerging clinical science, and doctors are caught in the middle between their patients and insurance companies. There are more than 100 strains of the Lyme bacterium borrelia burgdorferi. Symptoms include nerve damage, heart block, swollen joints and fatigue. Lyme can cause cognitive impairment, and specialists say the disease isn’t nearly as easy to treat as once thought.

Patients with doctors who prescribe a long-term cycle of antibiotics—despite the threat that insurance carriers will drop them—have had physical and mental function restored, especially if the diagnosis comes soon enough. “Doctors have to be pretty courageous to treat Lyme,” says Doug Fearn, president of the Southeastern Pennsylvania LDA.

Meanwhile, controversial state legislation has, until recently, died in the Senate’s Banking and Insurance Committee. The current bill would mandate that patients and physicians be informed of the two schools of thought that exist on Lyme. It would ensure that medical professionals are updated on the new science and protect a doctor’s right to apply clinical judgment. It would also make insurance companies pay for treatment ordered by doctors, while also focusing on prevention and public and in-school education.

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