March 08--The information is straightforward enough, and doctors don't dispute it:
Early laboratory tests for Lyme disease, caused by bacteria transmitted by the black-legged tick, may be inaccurate. And if symptoms persist, patients should return to their doctor to be retested for the disease.
Still, a legislative bill requiring doctors to hand their patients that information if they're tested for Lyme is like a blood-sucking tick under the saddle for many doctors.
For one thing, many doctors say they go over that with patients anyway.
Second, medicine is a fluid art as new studies and data are constantly coming out to change clinical practice and tests, possibly before the sunset date of the law, which is July 1, 2018.
And third, why are legislators meddling in doctors' work anyway? That's what Deltaville family practice doctor Sterling Ransone wants to know.
"It's a dangerous slide by the General Assembly," said Ransone, president-elect of the Medical Society of Virginia, who argued against the bill in committee. "We don't feel it's the General Assembly's job to codify the practice of medicine. My worry is, 'What is next? What is the next disease du jour?' Emotion frequently rules the day."
Last year, it was a law requiring that women have an ultrasound before an abortion. Legislators also passed a law in 2012 requiring radiologists to tell women getting mammograms whether their breast tissue is dense and that such tissue can hide cancer or other abnormalities. At this year's session, it was Lyme disease.
The National Capital Lyme Disease Association, a statewide support and advocacy group that pushed for the bill now awaiting the governor's signature, says its members' experiences show that not all doctors are advising their patients about the reliability of early lab tests. Members believe that results, delivered with the warning that Lyme disease was the sixth-fastest growing disease in 2011, could help prevent people with the disease from suffering longer than necessary.
The association was founded by Monte Skall of McLean in 2001. She said there are about 3,000 members across the state. Connie Kee, director of the Hampton Roads chapter, said that group has about 250 members.
The majority of members have a condition they refer to as "chronic Lyme disease," a term that itself has been the subject of controversy.
Most doctors say Lyme disease -- symptoms include fever, headache, fatigue and a "bull's-eye" rash -- typically can be cured with less than a month of antibiotics.
But the state's Lyme disease association and other support groups nationwide say the bacteria can get into the bloodstream and produce a chronic ailment that can linger for months or years, requiring long courses of antibiotics.
The Infectious Diseases Society of America and the American Academy of Neurology don't recognize chronic Lyme disease and say there's no scientific evidence to support that long courses of antibiotics are helpful. In fact, they say such treatment can be dangerous.
But many Lyme disease support groups include in their membership so-called "Lyme literate" doctors who treat patients with antibiotics for longer than what most doctors recommend.
In 2010, Virginia's National Capital Lyme Disease Association proposed a bill that filled hearing rooms of the General Assembly with their members.
It would have protected doctors who prescribe long-term antibiotics to treat Lyme disease from disciplinary action by the state Board of Medicine. The bill, opposed by the Medical Society of Virginia, failed.
The same year, a task force appointed by Gov. Bob McDonnell to study the issue called for better public education about Lyme disease and a more open-minded approach by the medical community to diagnosing and treating it.
This session, Skall said members decided to stay away from the treatment issue and instead supported a bill that focused solely on education.
The Medical Society of Virginia still opposed the measure, recommending the information be posted on the Virginia Department of Health's website so it could be updated if new studies and tests arose. But the final bill that passed would require doctors who test patients for Lyme disease to also give them the educational information.
The Medical Society of Virginia has urged its members to ask the governor to veto it.
Similar jousting took place over last year's bill regarding breast density and mammograms. At first, the bill required radiologists to not only inform women if they had dense breast tissue, but also to tell patients that supplemental testing could be beneficial. The bill was changed to recommend patients seek advice from their doctors if they have questions.
Other states have passed similar measures, but concerns have been raised about whether it will lead to costly and unnecessary testing. Likewise, Lyme disease legislation has passed in other states, mainly in the northeast where the nation's first cases were discovered.
According to the Centers for Disease Control and Prevention, the number of Lyme disease cases reported across the country rose from 23,763 in 2002 to 24,364 in 2011, with 96 percent of cases coming from 13 states in the upper Midwest and the Northeast, including Virginia.
The number of confirmed cases in Virginia rose from 259 in 2002 to 758 in 2012, according to the most recent Department of Health figures. Eastern Virginia had the fewest cases reported in 2012, at 25; health districts in the northern part of the state had the highest numbers.
Dr. Randall Fisher, an infectious disease specialist who practices at Children's Hospital of The King's Daughters, said testing for Lyme disease involves a number of components, not just lab testing. Doctors also consider symptoms and places a patient frequented before testing.
Like many conditions -- strep throat, for instance -- the body doesn't always have time to build up antibodies to the disease, which is why early tests may not identify the disease in the body. More testing would be required if symptoms continue. He said he goes over that with his patients.
While family practice doctors and pediatricians would be on the front line of the disease, doctors like Fisher would have more serious cases referred to them. He says he has treated fewer than 20 cases in the past five or six years: "It's not very common around here."
Members of the state's National Capital Lyme Disease Association said they think that the numbers are higher than reported by the state health department and CDC because of the difficulty in early testing.
Kee, of the Hampton Roads' chapter of the association, said she has had the disease for 20 years and that it took her seven years to get a diagnosis.
The CDC takes a measured approach to the debate. Officials there don't use the term "chronic Lyme disease" but rather "post-treatment Lyme disease syndrome." According to information on its website, 10 to 20 percent of patients treated for Lyme disease will have lingering effects of fatigue, pain or joint and muscle aches.
The agency said the exact cause is unknown but studies have not shown that a prolonged course of antibiotics can improve the condition. The agency's posting reads:
"If you have been treated for Lyme disease and still feel unwell, see your doctor to discuss how to relieve your suffering. Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic-fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available."
Even though the Lyme disease association members fought for the bill, it won't do most current members much good:
"It won't help people already dealing with the disease," Skall said.
"But for people who are not exposed yet, it will. It has the potential of reducing the number of chronic cases."
Elizabeth Simpson, 757-446-2635, elizabeth.simpson@pilotonline.com
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