by Caroline Turney
In 1934, Canyon Lake resident Harriet Bishop was six years old. Her parents noticed a red bulls-eye rash on her back as her brother commented, “We could use you for target practice!” Bishop recalled, “From that time on, I had painful symptoms throughout my lifetime, and I just managed it, thinking everyone had these problems.”
It wasn’t until 71 years later that Bishop was diagnosed with Lyme disease in May 2005. Bishop believes she suffers from a chronic form of the disease.
For years, factions within the medical community have disagreed over the duration, diagnosis, and treatment of Lyme disease, a problem affecting roughly 1,000 Texans (some research suggests ten times the reported number) since 1994 according to the Department of State Health Services. But now, the ongoing debate has heated up into a bitter controversy as the Infectious Disease Society of America released new guidelines last month for diagnosing and treating Lyme disease.
The IDSA is an organization of 8,000 members with infectious disease training. The latest guidelines for Lyme were set by a panel of doctors and scientists. Critics say the guidelines are based upon the belief that Lyme disease can be cured with short-term antibiotics, and can be diagnosed through observing specific symptoms such as a bull’s eye rash.
Groups such as the Lyme Disease Association, a national advocacy organization, and the International Lyme and Associated Diseases Society, an organization which supports Lyme specialists, contend that the symptoms can be vague making the disease difficult to diagnose and that the illness itself can exist in a chronic form requiring ongoing antibiotic treatment. Recently, ILADS President Dr. Raphael Stricker demanded a retraction of the IDSA’s guidelines saying the guidelines were based upon “exclusionary data selection” which may have biased the publication results.
Patients and health care providers who oppose the new guidelines are organizing nationally to respond to the recent changes in Lyme disease treatment guidelines. Posted through Lymenews.org is an imperative to the public to join a Lyme rights protest tomorrow from noon until 3 p.m. at the Westchester Medical Center in Valhalla, New York. According to Lymenews.org, the New York Medical College/Westchester Medical Center is home to three of the IDSA committee members. A letter from the Lyme rights site states, “We will not quietly tolerate them harboring this group.” Lymenews.org also issued statements saying, “This insidious disease is devastating the lives of children, families and our communities, while much of the medical establishment continues to deny the severity of this public health crisis.”
The response from an advocacy group in the Lone Star state was similar. On Nov. 14, the Texas Lyme Disease Association issues a statement calling the new IDSA Lyme disease treatment guidelines “callous, politically and financially motivated, and not based on sound medical practice.” Texas Lyme Disease Association President Donna Reagan said, “To deny needed medication to Lyme patients suffering from the ravages of the nation’s fastest-growing infectious disease is nothing short of inhumane, and a travesty to the American medical system. It is ironic that our country provides medicine to third-world nations to treat such illnesses, yet according to the new IDSA guidelines, our own citizens will be denied access to medications prescribed by Lyme specialists because insurance companies have already begun to adopt the IDSA guidelines as a means to deny coverage of expensive antibiotics and additional treatment therapies.”
However, statements by the IDSA contend that “The singular mission of the IDSA guidelines panel is to provide the highest quality of standards for treating patients; in addition, input from a variety of sources was welcomed and evaluated.” IDSA accounts further supported the organization’s position by explaining that 95 percent of patients diagnosed with Lyme disease are cured within a few weeks of treatment. The remaining 5 percent, the group believes, have ongoing symptoms related to misdiagnoses and wrong treatment, simultaneous infection with another disease, contraction of a new illness having similar symptoms but being unrelated to Lyme, or subsequent tick bites causing re-infection. The IDSA denies the validity of data supporting ongoing antibiotic treatment stating, “In more than 20 years there has not been one scientifically valid study published in the peer-reviewed medical literature that proves that the benefit of long-term antibiotic treatment out weighs the risk.”
The ongoing debate will be the topic of discussion at the next Austin Lyme Disease Support Group meeting at 11 a.m. Saturday Dec. 12 at the Brick Oven at Jollyville and Braker next to HEB. Guest speaker will be nationally known Lyme disease expert practitioner Ginger Savely, FNP-C. For more information, email firstname.lastname@example.org.
Regardless of new guidelines for treatment, Lyme disease patients like Harriet Bishop and Fulton resident Dana Mercer, DVM believe ongoing antibiotic treatment is necessary for living a normal life. Mercer said, “I can tell you that when I wasn’t taking daily antibiotics I felt like I wasn’t going to live to see tomorrow. I was spending 18 hours a day in bed.” Bishop recalls years of similar debilitating weakness. At times, she was so weak her husband had to feed her. “Before proper medication, I was dizzy and nauseous on a daily basis. Every night at bedtime I took an anti-nausea pill. Even then, some days I suffered attacks of vertigo so bad that I could not go on with my normal plans for the day.”