Lyme disease has recently gained much attention in the media and has become politicized in the United States and also in Canada.
Vocal individuals and groups have implied that the medical profession is systematically ignoring or neglecting patients with Lyme disease; these critics have cast doubt on current diagnosis and treatment approaches. Advocacy groups, led by the International Lyme and Associated Diseases Society, have called Lyme an unacknowledged epidemic for decades, one that leads to nerve damage, immune dysfunction, neurological deficits and miscarriage. These implications raise two questions: First, what does current scientific information tell us about Lyme disease diagnosis and treatment? Second, what could possibly motivate the medical profession to systematically neglect this disease and affected patients?
First, a brief review of the science. Lyme disease is a bacterial infection that can be transmitted by the bite of a specific type of tick (Ixodes, the black-legged tick). Its symptoms vary widely among individuals. Most common is a characteristic rash, which occurs early in the infection in many patients, but other effects, such as arthritis, Bell's palsy with facial paralysis and a temporary abnormality of the heart rhythm, are well-recognized complications that occur in few patients. Studies in geographical areas where infected ticks are common indicate that many people with evidence of past infection have not experienced any significant illness or symptoms. Less commonly, some patients who do not get antibiotic treatment may go on to experience prolonged infection and, exceptionally, their central nervous systems are affected.
Lyme bacteria are sensitive to several readily available antibiotics, and most stages of infection can be treated with antibiotics taken by mouth for two to three weeks. Patients whose central nervous systems are affected require intravenous antibiotics for up to 28 days.
Confusion around diagnosis and, subsequently, treatment has been introduced by the emergence of for-profit laboratories in the United States. While charging substantial fees, they use non-validated techniques and produce high rates of false positive results, in comparison with the national reference laboratories in Canada and the U.S. In fact, in one study, 57.5 percent of medically healthy control patients (with no suspicion of Lyme disease) had positive tests at a commercial laboratory specializing in Lyme.
A false positive diagnosis of Lyme disease can be very damaging, as the patient can be misled into taking costly and ineffective therapies, with the potential for serious side-effects. Of most concern, they may not have the real cause of their symptoms diagnosed and treated. There have been cases of patients dying of cancers or other progressive conditions while on treatment for misdiagnosed Lyme disease.
After appropriate treatment of documented Lyme infection, a small number of patients may have a syndrome with a variety of difficult generalized symptoms. It has not been shown that this syndrome is improved by further antibiotic therapy, as the bacteria are gone at that point. Patients who have been given a diagnosis of Lyme disease using non-validated laboratory tests, or who have persistent symptoms after appropriate therapy for confirmed Lyme disease, may indeed be experiencing troublesome or even disabling symptoms. These patients clearly warrant further medical assessment, in part to rule out other potentially serious and treatable diagnoses, as well as empathy, practical support and referral to specialized treatment programs, in selected cases.
Unfortunately, Internet resources for Lyme disease that look very professional can mislead patients into presenting to their doctor with an unfounded conviction as to their diagnosis and proper treatment. Focusing on a preconceived diagnosis is not a good starting point for making an accurate diagnosis of any symptom or disease.
It is worth pointing out that advocacy for enhanced funding and treatment access for specific diseases, whether it is breast cancer or a rare genetic condition, is widely accepted in North America, and patient advocacy may be effective in raising awareness and sometimes increasing dedicated resources. This advocacy is rarely if ever specific about improving the technical details of diagnostic and therapeutic practice.
In contrast, advocacy and related political and legislative developments around Lyme disease encroach heavily on technical areas-including scientific evidence, expert opinion and prescription of diagnostic and therapeutic guidelines and practice-to an unprecedented extent. This is consistent with troubling evidence in other areas, such as climate change or the antivaccine movement, of a move away from evidence-based policy and toward the acceptance of "alternative facts" in public policy decisions.
The most puzzling claim is that Lyme patients are being systematically underdiagnosed by the medical profession. Doctors, like patients, welcome simple answers and are delighted to find diagnoses that are readily treatable and lead to satisfied, healthy patients. In fact, a problem of overdiagnosis and overtreatment of Lyme disease (as happens in the U.S. with antibiotic use in general) would seem more likely.
It is hard to think of any motive, financial or otherwise, for under-recognition and undertreatment of documented Lyme disease by doctors. By contrast, there may be a concern over financial conflicts of interest at for-profit laboratories and treatment centres or other organizations with a vested interest in alternatively diagnosed Lyme disease.
For the individual patient, getting the best treatment depends on getting the right diagnosis. When the doctor or the patient starts out with a preconceived diagnosis, it becomes that much harder to arrive at the right answer.
Stan Houston is a professor of medicine and of public health at the University of Alberta and a specialist in infectious diseases and tropical medicine.
Lynora Saxinger is an infectious diseases physician and associate professor of medicine and microbiology and immunology at the University of Alberta. She does clinical work, teaching and research in general infectious diseases, HIV, HCV, tropical medicine, and antibiotic stewardship and resistance.
This article originally appeared Nov. 21 in Policy Options.