Virginia to Require Doctors to Inform Patients About Lyme Disease False Negatives

Virginia will soon become the first state in the nation to require doctors who run lab tests for Lyme disease to inform their patients about so-called  false negatives.

Legislation that mandates the disclosure statement was recently signed by Gov. Bob McDonnell and takes effect July 1.

The push for the bill came after a Lyme disease task force held meetings around the commonwealth last year.

"We heard the same story over and over again," said Monte Skall, executive director of the National Capital Lyme Disease Association. "The blood would be drawn but then it would come back negative and the doctor would tell the patient whatever is causing your symptoms is not Lyme because your test is negative."

But all too often the test initially used to test for Lyme returns a negative result because the antibodies it measures haven't developed sufficiently, Skall said.

Mary Cavanaugh knows first-hand about the consequence of a false negative. She was living in Ashburn in 2009 when she first noticed symptoms, but her initial test returned a negative result.

"It was basically, 'Oh well, I guess you're just stressed or tired or whatever,' and I was at one point incapable of functioning,” she said.

Continued research on Lyme disease prompted her to ask for follow-up tests and one of them was positive. She said because of the delay in treatment it took a year to get her symptoms under control.

"It certainly did have a huge impact on my treatment and how quickly I got well and things like that," she said.

The new legislation will require doctors to give patients a disclosure statement that tells them in part, "If you are tested for Lyme disease, and the results are negative, this does not necessarily mean you do not have Lyme disease."  Skall said it's a big breakthrough. She believes the form will prompt patient questions.

"So the patient will immediately want to ask the doctor, 'What does this mean,' and the doctor will say, 'Your symptoms could still be caused by Lyme disease,'" Skall said.

She hopes patients will push for re-testing if symptoms persist and wind up with earlier treatment.

"What we’re hoping is the results will be is that people will get treated and diagnosed early and they will not become chronic," Skall said. She also hopes spotlighting the flaws with one of the Lyme disease tests will soon lead to a more accurate diagnostic tool.

The number of Lyme disease cases in Virginia is increasing, with 25 percent of the cases in Loudoun County alone.

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