At just 12 years old, Sally Jordan has spent a third of her young life tormented by a mystery illness that wracked her body with disabling pain and forced her to give up dancing and other activities she loved.
She remembers spending days confined to her bed with fevers, rashes and joint pain when she should have been sitting with her classmates at the Brewer Community School. Formerly an A student, she suffered neurological problems that affected her ability to read and write and to perform basic tasks on her own, such as putting on her socks.
Her parents suspected Lyme disease. The tests were inconclusive, their doctor said. Then came suspicions that Sally had rheumatoid arthritis, kidney disease, and a host of other ailments. One specialist told Sally her suffering was “all in her head,” suggesting the girl volunteer at a soup kitchen to feel better about herself.
Years of tests and treatments brought no relief, further deterioration of Sally’s health and more confusion.
It wasn’t until Dr. Charles Ray Jones, a Connecticut pediatrician and polarizing figure in the Lyme debate, diagnosed Sally with the disease in December 2011 that the Brewer girl began to have hope. Jones has treated thousands of patients for the disease with an unorthodox approach involving long-term antibiotics, and has collected powerful critics, loyal supporters and professional sanctions along the way.
Today, Sally remains on the antibiotics and is “feeling great,” she said. Well enough to travel to Augusta recently to testify in favor of a controversial bill that’s pitting Lyme disease patients against the medical mainstream.
“I wanted to educate the public so nobody has to suffer like I did,” Sally said.
The legislation, LD 597, would require the Maine Center for Disease Control and Prevention, the state’s official source of public health information, to include on its website information about “alternatives” for the treatment of Lyme disease.
Lyme cases have risen in Maine in recent years, now appearing in all 16 counties, and the state recorded an all-time high of about 1,100 cases of the disease in 2012. Lyme, as well as several other increasingly prevalent infections, is transmitted by the bite of the eight-legged deer tick.
The bill directs the Maine CDC to link to treatment guidelines for Lyme recommended by the International Lyme and Associated Diseases Society, a group that supports use of antibiotics over months and sometimes years to treat persistent or “chronic” cases of Lyme.
While adding a few links to a state website may seem minor, disseminating the information would fly in the face of what Maine CDC officials and most infectious disease specialists believe about Lyme. The medical mainstream contends that all of the scientific evidence to date clearly shows that a month or less of antibiotics almost always rids the body of Lyme bacteria, while up to three months is sometimes needed to treat later-stage symptoms.
Most Lyme disease experts don’t believe that chronic Lyme exists, arguing that the disease has become a convenient diagnosis for a wide range of health complaints. Some call long-term antibiotic therapy harmful and unwarranted.
“This is far and away the most irresponsible, misguided, and dangerous bill related to anything that I have any expertise with in all the years I’ve been in practice,” said Dr. Robert Pinsky, hospital epidemiologist at Eastern Maine Medical Center in Bangor, who has practiced in Maine for nearly 25 years.
The International Lyme and Associated Diseases Society’s “pseudoscience” view of Lyme has been repeatedly discredited and runs contrary to every major scientific organization, including not only the U.S. CDC, federal overseer of the Maine CDC, but also the National Institutes of Health and others, Pinsky said.
“This is essentially the same as if they were to pass a bill requiring Maine CDC to implicitly endorse the recommendations of groups that recommend against any childhood vaccination, or essentially endorsing views of groups that advocate that HIV is not the cause of AIDS,” he said.
The CDC and most doctors rely on the guidelines of the Infectious Disease Society of America, one of the nation’s largest medical organizations, in diagnosing and treating Lyme disease.
Pinsky said he regularly treats and provides consultations for patients erroneously diagnosed with Lyme and treated inappropriately by a small number of health providers who promote the International Lyme and Associated Diseases Society’s practices. Patients have been put at serious risk, both by delays in receiving accurate diagnoses and by ill-conceived antibiotic treatment that has been shown, in several large randomized clinical trials, to offer no greater benefit than placebo, Pinsky said.
Some of his patients have suffered life-threatening complications from the treatment, he said.
Inappropriate use of antibiotics has been shown to contribute to deadly “superbugs” that have grown resistant to the drugs. The head of the U.S. CDC recently described one family of the bacteria, called carbapenem-resistant Enterobacteriaceae, as a “nightmare bacteria.”
Many Lyme patients and some doctors believe the disease is far more prevalent than most doctors recognize and that it can linger in the body after treatment with antibiotics. In Maine and other states where Lyme sickens more and more people each year, patient groups have grown fed up with the medical establishment’s response to their illness. Many feel doctors fail to take their symptoms seriously, driving some patients to “Lyme literate” physicians they find through word of mouth or online groups.
Lyme advocates who criticize the commonly accepted guidelines as too narrow point to the personal stories of many sufferers who have gotten well after prolonged treatment with antibiotics, such as Sally Jordan. Doctors’ rigid view of the disease prevents many Lyme suffers from proper diagnosis and causes avoidable suffering, they say.
Physicians acknowledge that some Lyme patients continue to suffer with symptoms — from fatigue and muscle aches to serious memory and brain problems — long after treatment. But they don’t believe that lingering Lyme bacteria are responsible, speculating that symptoms are caused by either a new infection from another tick bite or residual damage to tissues and the immune system that occurred during the original infection.
Antibiotics may make some of those patients feel better because they have anti-inflammatory and other properties besides killing bacteria, Pinsky said.
“There’s no doubt that people may feel better for several reasons,” he said. “These are often people who have had undeniably real symptoms for a long period of time, they’re very troubling, they often interrupt their lives, they defy diagnosis.”
A proposed amendment to the hotly debated legislation would drop the requirement that the Maine CDC’s website link to the International Lyme and Associated Diseases Society, but instead to Lyme advocacy groups, which support the society’s views. Sponsored by Rep. Sheryl Briggs, D-Mexico, the bill is due for further debate in the House and Senate next week.
The bill’s supporters are targeting not only the Maine CDC, but also conversations about Lyme in the doctor’s office. The legislation would require health care providers who order a lab test for Lyme disease to inform patients that a negative test may not definitively mean that Lyme isn’t present, as well as discuss retesting and additional treatment.
Doctors consider both patients’ symptoms and lab tests in diagnosing Lyme disease.
Complicating diagnosis is the fact that the characteristic “bull’s eye” rash around the tick bite, an early hallmark of the infection, may not always occur or be visible to patients. The rash wasn’t found in half of the Lyme cases identified last year in Maine, according to a Maine CDC report.
Lab tests don’t detect the actual Lyme bacteria, called Borrelia burgdorferi, but rather antibodies that the body produces to battle the infection. Those antibodies take time to develop, contributing to false negative test results in the early days of infection.
Sen. Geoff Gratwick, a Bangor Democrat and rheumatologist, said while Lyme disease is a serious problem that causes terrible suffering, politicians have no place inserting themselves in the doctor-patient relationship.
“I think that’s a very bad precedent for legislators to be saying how any group practices their craft,” he said.
The Maine Medical Association strongly opposes the bill’s “anti-science requirements.”
Testing for Lyme is just as accurate as for most other infectious disease, from strep throat to measles, but singling out Lyme for a special disclosure by doctors could give patients the opposite impression, Pinsky said.
“There’s nothing unique about Lyme disease in that regard,” he said. “The testing that’s available for Lyme disease is every bit as accurate as for virtually every other infectious disease that I see. It has limitations, but the limitations that are being promoted are not based in science.”
Dr. Beatrice Szantyr, a Lincoln pediatrician who favors the bill, testified before lawmakers that the disclosure to patients is critical to informed consent, a pillar of the doctor-patient relationship.The state has passed similar regulations concerning breast cancer patients to ensure they are aware of all treatment options for that disease, she said.
“Medical practitioners are required to present all treatment options, regardless of their personal, even expert opinion as to which option is best,” her testimony read. “The numbers of patients who feel they have not been similarly sufficiently informed concerning Lyme disease diagnosis and treatment demonstrates the need for a similar specific action in this case.”
Back in 2007, Sally Jordan was told her test for Lyme disease came back negative, a result that put her on a path to endless tests and visits with 25 doctors before her eventual diagnosis. She doesn’t remember ever seeing a tick bite or having the telltale rash, but a different Lyme test called a “Western blot” finally confirmed she had the disease.
She wishes one of those many, many doctors had told her parents that the first test could have been wrong, Sally said.