Symposium: Lyme disease spreading worldwide
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By MEL HUFF Staff Writer - Published: August 5, 2007
MANCHESTER – Two Lyme disease researchers and a nationally known Lyme disease advocate presented a picture Friday of a surging but poorly understood public health threat that divides the medical community and leaves patients groping to find effective treatment.
Around 30 patients and family members gathered for the fourth annual Lyme Disease Symposium. The high-profile keynote speakers included Pat Smith, president of the Lyme Disease Association; Dr. Brian Fallon, the director of the Lyme and Tick-borne Diseases Research Center at Columbia University Medical Center, and Dr. Daniel J. Cameron, an internist, epidemiologist and clinical researcher.
The physicians described an evolving but still incomplete understanding of the disease. There's not even a way to determine when, or if, a patient is cured. "A blood test is not helpful to say when Lyme disease is over," Cameron said in response to a parent's question. "There is no test to say, "'I'm done,' or 'I'm half done'." He noted that many of the biological markers that are elevated in Lyme disease are also elevated in other conditions.
Lyme disease wreaks devastation on the human body. Its cause arthritis in children and adults, neurological problems such as fatigue, memory loss, migraines and searing pain, and psychiatric symptoms including depression, dementia, panic attacks and obsessive-compulsive disorder.
The disease has been around for decades; Cameron recalled that an investigator found evidence of the bacterium in some mouse ears in the Museum of Natural History that dated from the 1920s or '30s. But recently Lyme has begun to spread.
Smith cited United Nations studies "linking an increase in previously suppressed infectious disease with ... global environmental changes." Forest fragmentation has contributed to a loss of predators such as wolves and birds of prey that held the white-footed mouse population in check. The deer tick, which transmits Lyme disease, feeds on deer but doesn't get the infection from them, Cameron observed. The tick gets infected from mice.
A four-year World Health Organization study concluded that "deforestation and climate-induced habitat change" are affecting the carriers of diseases such as malaria and Lyme disease, Smith said. Studies found that Lyme disease is prevalent in rural Senegal, Mali and Mauritania. A report from Sweden noted that ticks are now found near the Arctic Circle. Lyme disease is the most common vector-borne disease in the United States.
The divisions in the medical community over Lyme disease begin with diagnosis and extend to treatment. The criteria that the Centers for Disease Control and Prevention use for surveillance include: a case with a "bull's-eye" rash greater than five centimeters or a case with at least one manifestation (cardiac, neurological, musculo-skeletal) that is confirm by laboratory testing – a positive ELISA (enzyme-linked immunosorbent assay) followed by a test known as a "Western blot."
Some doctors are unwilling to make a diagnosis of Lyme disease unless the symptoms meet the CDC's guidelines. Others, including those at the symposium, believe the criteria are too narrow and exclude many patients who are infected. As a result of these differences, there are now two sets of treatment guidelines, a set developed by the Infectious Diseases Society of America, and those that Cameron wrote for the International Lyme and Associated Diseases Society.
The CDC states that its surveillance criteria are not intended for diagnosis:
"Surveillance case definitions establish uniform criteria for disease reporting and (1) should not be used as the sole criteria for establishing clinical diagnoses; (2) should not be used in determining the standard of care necessary for a particular patient; (3) should not be used as setting guidelines for quality assurance or providing standards for reimbursement."
One result of the misuse of the surveillance criteria, Smith said, is that health insurance plans deny payment for treatment of patients who don't meet the narrow standards. (In the case of chronic Lyme disease, treatment can run to tens of thousands of dollars.) When insurance plans do pay, they typically base payment on the guidelines developed by the Infectious Diseases Society of America, which call for briefer and less expensive treatment. The issue has become so contentious that in Connecticut, where Lyme disease was first identified, the attorney general has issued a "civil investigative demand" against the society, charging that the guideline developers had a commercial interest in them.
Fallon, who is the director of a four-year study of brain imaging and treatment of persistent Lyme encephalopathy funded by the National Institutes of Health, noted some of the tantalizing leads suggested in the study's first year, such as the possibility of a test that may predict who will get better with several weeks of intravenous antibiotic treatment. Other findings are puzzling. The center has confirmed that repeated antibiotic treatment helps patients, but, Fallon said, "We don't know why it's happening."
A member of the audience asked, given the uncertain state of knowledge, if the doctors would suggest a course of action for people who suspect they have Lyme disease.
"It's important to find out what the options are at the first visit with the doctor," Cameron said. "Even if the doctor says they're only going to have one plan, not to treat unless they get a Western blot, it's nice to know there are alternatives."
Cameron recommended going back for a follow-up visit 10 days later if symptoms persist. "The doctor may change his mind or look deeper," he said.
Cameron's third suggestion was that if a person still feels sick but doesn't have the diagnostic bull's-eye rash, to "make sure you don't get dismissed too quickly" and involve a neurologist or other specialist. "There are different perspectives on how to treat it," he said.
Fallon added that if symptoms involving more than one system are present, such as depression and joint problems, Lyme disease is likely to be the cause. "There are not many things that can cause brain problems and joint problems at the same time," he said. On the other hand, he said, if there's no pronounced fatigue, it's probably not a persistent Lyme infection.
The doctors had few concrete answers to a father's question about why some patients get better and some relapse, other than to note that the longer the gap between infection and treatment, the greater the likelihood of relapse.
Dr. Stephanie Holzman, a veterinarian and one of the organizers of the symposium, said she had some answers, "as a vet and a Lyme disease patient." Holzman sees dogs and horses with Lyme disease that have "all sorts of symptoms or lack of symptoms," she said. If a dog comes in with kidney failure, she knows it will die. Other dogs come in limping because of an affected joint and after being treated with doxycycline, "They'll never look back." A horse with joint pain will survive, she said, but will never race again. "One of the hot topics at conferences is why we see so much variation in symptoms."
Before she was infected with Lyme disease, Holzman ran three marathons. "I'm never going to do those activities again," she said. It took her 18 months to get diagnosed, and by the time she started treatment, her joints were damaged.
Holzman said she was helped by doctors who "collaborated and networked" in treating her. "I'm not where I was, but I'm a lot better," she said. "It stinks not to be a racehorse anymore, but you can still have a really good life."
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