HARTFORD - Doctors and health advocates urged legislators yesterday to improve and protect access to treatment for people with chronic Lyme disease.
Advocates say only a small number of physicians are treating long-term effects of the tick-borne illness because such therapies are not accepted by the mainstream medical community, which says there are no proven benefits.
Long-term antibiotic treatment lowers the chance of misdiagnosis and increases the quality of life for patients with the disease, Dr. Daniel Cameron said at a breakfast forum hosted by state Rep. Jason Bartlett, D-Danbury, who has pushed for legislation to improve Lyme disease reporting to the state Department of Public Health.
"There's this view that there's no such thing as chronic Lyme and that it's nothing more than the aches and pains of daily living," said Cameron, president of the International Lyme and Associated Diseases Society, a nonprofit group focused on advancing treatment. He also runs a practice in Westchester County, N.Y.
Advocates yesterday morning asked legislators to push for protection of doctors who treat chronic Lyme. Cameron said the controversy has prompted some physicians to shy away from progressive treatments for fear their licenses could be revoked.
"(The) patient really loses if doctors are always looking over their shoulder to see if the state is watching," he said.
Elizabeth White, a retired nurse practitioner from Trumbull, has suffered from babesiosis and bartonella - both tick-borne illnesses - for nine years, and said if she hadn't sought alternative intravenous therapy, she would have died.
"This is a devastating disease, especially for people who can't find a Lyme-literate doctor," she said.
The state reported more than 1,700 cases of Lyme last year.
Cameron said treatment should be determined by physicians experienced in Lyme disease and not by conventional guidelines that recommend only a 30-day antibiotic treatment.
Lyme can cause severe joint pain, fatigue, temporary paralysis, depression, irregular heart beat and dementia.
"Patients need to be able to choose their options of treatment, and we need freedom to use our own judgments as doctors," Cameron said.
A majority of physicians, however, use guidelines recommended by the Infectious Disease Society of America that say Lyme disease can be treated and cured within two to three weeks.
"There is no data to suggest otherwise and this has been looked at," Dr. Gary Wormser, said in a telephone interview. Wormser is a doctor with the New York Medical College in Valhalla, N.Y., and is a spokesman for the infectious disease society.
The society said the disease can be easily diagnosed by the presence of a bull's-eye rash or a positive blood test.
Wormser said studies over the last five years show ongoing intravenous treatment can lead to complications or create drug-resistant superbugs that are difficult to treat.
"The side effects outweigh the benefits," he said.
But Lyme advocates like Pat Smith, president of the Lyme Disease Association in New Jersey, said at the forum yesterday that current testing methods are unreliable. Smith said Lyme symptoms are often mistreated because they can mimic those of neurological disorders such as multiple sclerosis, Alzheimer's disease and chronic fatigue.
She cited a recent Johns Hopkins study that reported only 25 percent of positive cases of Lyme are identified by a blood test; and a rash may occur only 50 percent to 60 percent of the time.
As controversy surrounding treatment grows, patients are shortchanged, Smith said.
"We can't let patients be in limbo while these discussions are being held," she said. "We need to address these issues now."
The debate is fueled by the case of a New Haven doctor whose treatment of Lyme disease in two Nevada children in 2004 and 2005 was called into question by the state Department of Public Health.
The state Medical Examining Board yesterday gave Dr. Charles Ray Jones two years of probation and a $10,000 fine for diagnosing the children with Lyme disease and treating them with antibiotics before examining them.
Jones disputed that, and said he planned to appeal the decision. Jones has drawn support from across the country because he has ignored consensus treatment guidelines for Lyme disease and prescribed antibiotics to children with the ailment.
Wormser said physicians frequently overdiagnose Lyme disease.
"What's alarming to me is that they diagnose people of having a disease they don't have at all and recommended long-term antibiotics," he said.
Georgina Scholl, research chairwoman of the Fairfield County Municipal Deer Management Alliance who attended the forum, said she wasn't qualified to comment on treatment. Stamford, Norwalk and Greenwich are members of the alliance.
Scholl instead emphasized prevention as the key to decreasing the disease.
"Treatment doesn't give you immunity and protection. Let's focus on prevention," she said.