Chronic Lyme disease: Does it exist and should it be treated with long-term antibiotics?
Lyme disease is a growing health threat in Virginia, but a special task force is looking for ways to slow its spread.
There is an insurance problem, said Dr. Christine Green, Mona’s specialist. Green said many advanced stage Lyme disease patients go through the same ordeal.
Lyme-TAP is a new patient assistance program helping patients with financial hardship pay for diagnostic Lyme testing who would otherwise be unable to afford testing.
The problems hit her in April of last year: severe fatigue, headaches, nausea, fevers, insomnia.Seventh-grader Victoria Lehtonen went to her primary-care doctor and was prescribed a short course of antibiotics, but once the medication was used up, her symptoms returned.Victoria proceeded to doctor after doctor with her mother, Karla, but was diagnosed with "post-infectious fatigue syndrome" and was sent home, still suffering.
The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Four National Institutes of Health (NIH) trials validated the existence and severity of CLD. Despite the evidence, there are physicians who continue to deny the existence and severity of CLD, which can hinder efforts to find a solution. Recognizing CLD could facilitate efforts to avoid diagnostic delays of two years and durations of illness of 4.7 to 9 years described in the NIH trials. The risk to society of emerging antibiotic-resistant organisms should be weighed against the societal risks associated with failing to treat an emerging population saddled with CLD. The mixed long-term outcome in children could also be examined. Once we accept the evidence that CLD exists, the medical community should be able to find solutions. Medical professionals should be encouraged to examine whether: (1) innovative treatments for early LD might prevent CLD, (2) early diagnosis of CLD might result in better treatment outcomes, and (3) more effective treatment regimens can be developed for CLD patients who have had prolonged illness and an associated poor quality of life.
Dr. Daniel Cameron, the immediate past president of the International Lyme and Associated Diseases Society, which acknowledges the existence of chronic Lyme disease, said he was disappointed but not surprised. Insurance companies may use the guidelines to deny coverage for long-term treatment, he said, but doctors will continue to see patients with chronic problems that require treatment."I don't think the IDSA is going to continue to offer much leadership in terms of solving the chronic Lyme disease problem," he said. "I don't see them welcoming the challenges of somebody that's been sick for months or years."
The eight-member review panel issued its report Thursday, unanimously agreeing to uphold the disease treatment guidelines developed in 2006 by the Arlington, Va.-based Infectious Diseases Society of America. The guidelines, among other things, don't recommend treating Lyme disease with antibiotics for more than a few weeks and say there is no evidence that chronic Lyme disease exists.
Why are crippling Lyme disease cases being misdiagnosed? ILADS member, Dr. Steve Harris, discusses his Canadian Lyme disease patient.
One of the main issues which will be discussed at the hearing is the use of long-term antibiotics. Because they're not recommended in the guidelines, insurance companies won't pay for them. At the hearing there will be experts on both sides of this debate. The documentary "Under our Skin" by Open Eye Productions debuted at the Tribeca Film Festival. It will be shown at select theaters in the Philadelphia area in August. For more information, visit: