Tuesday, October 31, 2006
THE STAR DEMOCRAT
Easton, Maryland
By STEVE NERY
Staff Writer
October 31, 2006
While National Lyme disease patient advocates are protesting the Infectious Disease Society of America’s new diagnostic and treatment guidelines, a group of Maryland advocates recently resigned from a state Lyme disease subcommittee largely because of the state’s support for the new strict guidelines.
The Infectious Disease Society of America’s (IDSA) new guidelines were published online earlier this month after being approved in late August. Many Lyme advocates had objected to the IDSA’s previous guidelines for being too strict and outdated, and are even less happy with the new set.
While erythema migrans, or the “bullseye rash” that appears on some patients, is enough for a clinical diagnosis, according to the new IDSA guidelines, nothing else is. The IDSA recommends blood testing, which has been found unreliable by many studies, while the Centers for Disease Control had been recommending clinical diagnosis.
Lyme disease is caused by the bacteria Borrelia burgdorferi, transmitted through tick bites. Less than half of all infected people recall the tick bite, according to the International Lyme and Associated Diseases Society (ILADS), and more than half never develop the bullseye rash.
ILADS President Dr. Raphael Stricker wrote a letter to Dr. Sherwood Gorbach, editor of “Clinical Infectious Diseases,” which also published the IDSA guidelines, demanding a retraction of the article. Stricker wrote that the guidelines were written by a biased, one-sided group and threaten to harm patients and patient care, according to U.S. Newswire.
Pat Smith, president of the Lyme Disease Association (LDA), also issued a “call to action” for people affected by the disease. “Effectively banning clinical discretion and classes of drugs, alternative treatments and even supplements for any manifestation of Lyme” is reprehensible, Smith wrote in a letter to Lyme groups across the nation.
The LDA started a petition in protest, available on the group’s Web site at
www.LymeDiseaseAssociation.org.
The new guidelines “take the place of a long-standing policy of deference to the clinical discretion of the treating physician in both diagnosing and treating the disease,” the petition reads.
In Maryland, four patient advocates resigned from the Department of Health and Mental Hygiene Lyme Disease Advisory Subcommittee in mid-October. Lucy Barnes, director of the Lyme Disease Education and Support Groups of Maryland, said she was initially hopeful about the role patient advocates might play on the subcommittee, which met three times beginning in October 2005.
“We went in there with big hopes that we could educate and make a difference for people with Lyme, but right from the beginning, it didn’t look promising,” Barnes said.
“We’re not quitting because we’re mad,” she added. “We’re quitting because it’s a brick wall in front of us.”
Barnes said she and other advocates hoped to get the state to support more “patient-friendly diagnostics.”
Johns Hopkins University published a study last fall rating conventional Lyme disease testing methods — especially the common two-tiered blood test — as “unreliable,” one of many studies questioning the accuracy of traditional diagnostic methods. Ironically, Hopkins has been criticized by Lyme groups for failing to adequately address the disease itself.
“Although the laboratory testing for diagnosis of Lyme disease is improving, the degree of sensitivity needed for a high level of assurance at the time of early Lyme disease is still not obtainable, even through combinations of various laboratory tests,” the Hopkins report concluded. “Thus, clinical suspicion based upon well-recognized cardinal features of Lyme disease is still the most appropriate approach.”
Barnes said there are better testing methods and treatment guidelines out there. IGeneX, a California testing lab, has developed alternative tests, while ILADS has diagnostic and treatment guidelines online at www.ilads.org.
Nearly 500 people showed up at Chesapeake College earlier this year when ILADS guidelines author Dr. Joseph Burrascano Jr. spoke at a Lyme disease symposium.
“It’s like using leeches instead of modern lab equipment to draw blood,” Barnes said of the IDSA guidelines, adding she believes it will set them back 20 years.
There’s no money going to fight the disease, she added.
“A handful of chronically ill people can’t do it alone,” she said.
Barnes said she is hopeful legislators will take steps to fight a growing regional problem. Lyme disease advocates have received support from some local politicians, including U.S. Rep. Wayne T. Gilchrest, R-Md.-1st.
Barnes said different people, including a man from an insurance company, showed up to the three DHMH subcommittee meetings. Other members included DHMH workers and veterinarian staff workers. Two of the four Lyme disease patient advocates were allowed to attend each subcommittee meeting.
Barnes said she continues to get several calls a day from people looking to get treated and people who haven’t been cured. She has spoken to people who have been denied treatment based on the new IDSA guidelines, she noted.
According to the IDSA, a doctor can administer a single dose of doxycycline after a tick bite as a preventative measure if the doctor can identify the tick as a certain species, if it is within 72 hours of tick removal and if the rate of Lyme infection among ticks in the area is higher than 20 percent.
Barnes said one pill is not enough for prevention, and questioned how many doctors can accurately identify ticks. She also said she believes the IDSA recommends doxycycline rather than other more effective drugs because it is much less expensive.
The IDSA guidelines also state that a few weeks of antibiotics produces a highly favorable outcome, and urges doctors not to administer alternative treatments, while Lyme support groups favor treatments on a case-by-case basis.