“Chronic Lyme Disease” Advocacy: First, Do No Harm 1. Background 1.1 Lyme disease occurs when an infected tick injects an individual with the bacterium, Borrelia burgdorferi. In most cases, a rash is seen early on, however if this is absent, missed or untreated, the bacterium can spread causing arthritis, nerve damage and other problems. Lyme Disease is curable with recommended doses of antibiotics, however some patients with the disease will continue to have symptoms after treatment, most likely due to the initial damage, related healing and their body’s immune response. 1.2 Many internet sources are directing patients, even those without a positive lab test for Lyme disease, to information that suggests that further long-term antibiotic treatment would be beneficial. While some of this information does contain anecdotal stories of improvement while taking the medicine, many doctors have serious concerns with this direction. 2. Long Term Antibiotic Treatment 2.1 Well-designed studies show that long-term antibiotic treatment - beyond standard recommended treatment - does no more for people than salt water. This means that if someone feels better while using the treatment, it is either because they were healing anyway or due to the placebo effect – the power of the mind’s belief in treatment. 2.2 There is also the concern that antibiotics can prove to be dangerous placebos. The studies indicated that nearly one in four patients experienced adverse events from treatment, including serious bowel infection, infection from catheters inserted in blood vessels and significant allergic reactions. Death is also a real, but rare, complication of antibiotic use in any setting. 2.3 Long-term antibiotics increase the risk of drug-resistant bacteria, making any resulting infection difficult to treat. 2.4 Finally, focus on this treatment could result in misdiagnosis and failure to be treated for another cause for the symptoms. Chronic Lyme Disease Media Statement, October 14, 2014 1 3. Advocacy and Best Evidence 3.1 “Chronic Lyme” advocates subscribe to alternate views of diagnosis and treatment, which come from guidelines issued by a group called the International Lyme and Associated Diseases Society (ILADS). Many of those viewpoints were echoed in a 2010 report on Lyme Disease provided to the BC Ministry of Health. 4. These sources focus on only a small fraction of the available science on the subject, use papers that are based on flawed research methods, and include statements that are not supported by the references cited. 4.1 For example: 4.1.1 The ILADS guidelines used a 1998 paper as evidence of persistence of the Lyme organism after recommended treatment. The paper used very unusual methods, including a requirement for Detroit tap water in the growth medium, and failed to demonstrate that what was seen under the microscope was actually the Lyme bacterium. 4.1.2 The report to BC government describes ways that the Lyme bacterium can persist in the body, but the referenced evidence refers to entirely different bacteria. 4.1.3 A health professional trained in microbiology, infectious diseases or clinical medicine did not review the BC government’s report. 4.2 Our members are also concerned about the high rates of false diagnoses coming from alternative tests performed in some alternative US labs. Misdiagnosis from these tests has led to complications from inappropriate treatment and has also delayed diagnosis of other treatable illnesses. 5. Ensuring Treatment is Guided by Best Practices 5.1 Guidelines that reviewed all of the available evidence, critically evaluated the methods of each paper and sought external peer-review for accuracy were produced by the Infectious Disease Society of America (IDSA) and are endorsed in this country by the Association for Medical Microbiology and Infectious Disease of Canada. These are similar to evidence-based guidelines produced in several other countries. 5.2 In 2006, the Attorney General for Connecticut, USA, was persuaded by Lyme advocates to put these scientifically based guidelines under judicial review. An independent panel, agreed to by the ILADS group, reported, in 2010, that every one of more than 50 IDSA recommendations was sound and further, made it plain that allegations of conflict of interest against its contributors were groundless. Even with complete vindication of the process, IDSA is committed to future updates based on new evidence. 5.3 This outcome shows that the best approach to health guidelines does not emerge from a political or even judicial process, but from a very rigorous review of evidence. Chronic Lyme Disease Media Statement, October 14, 2014 2 5.4 In contrast, alternative ILADS guidelines have never been put through this kind of external peer-review for accuracy. While authors of those guidelines are sincere professionals, ILADS and Lyme advocacy groups should also consider the public optics of their own potential conflicts. ILADS meetings draw sponsorship from industries that financially benefit from a perception that Lyme disease is more common than it is, including US laboratories that provide unapproved testing for profit and by manufacturers of alternative therapies. 6. A Commitment for those with Complex Chronic Health Challenges 6.1 Many physicians have done an excellent job of providing care for people with complex chronic symptoms, however many people with suspected Lyme disease, Chronic Fatigue Syndrome and other conditions have had a hard time getting good care. 6.2 Colleges of Physicians and Surgeons in Canada are not concerned when physicians make a one-on-one decision for alternative therapy, even with antibiotics. However, Colleges are concerned if a member represents an approach not based on the evidence as a standard of care for everyone. We applaud provinces and health authorities that support clinics modeling optimal care for patients with suspected Lyme disease, and strongly encourage physicians to do their best to make room for people with questions about Lyme in practices throughout Canada. 6.3 Questions from advocates can also help us look at medicine and science in different ways. However, passion for the cause can create further unintended harm if it is channelled into personal attack on individuals and institutions that do not share the same views. Regrettably, such exchanges have caused some physicians to avoid patients referred for “Chronic Lyme Disease” and scientists to question whether research in the field is welcomed. This approach only hurts the patients. 7. Conclusion 7.1 Sorting through evidence is hard work. We encourage patients to work with their physician to identify the most reliable sources of information. We should also look to experience in other areas of health such as diabetes, arthritis and cancer. There are models of interaction between scientists, doctors and advocates that truly promote a high standard of care while assuring that first, we do no harm. 7.2 For those patients who have been told that they may have “Chronic Lyme Disease”, please contact your physician, ask for an evaluation based on the best available guidelines and remember to be cautious about information that you find on the internet. Chronic Lyme Disease Media Statement, October 14, 2014 3 8. Key Messages 8.1 Lyme disease exists in Canada and physicians know, diagnose, treat and report it. The public health system does not take it lightly; tick distribution, proportion of ticks that are infected with Borrelia and reported of cases of Lyme disease are all tracked carefully. (http://www.phac-aspc.gc.ca/idmi/tickinfo-eng.php#sec-2.2) 8.2 As with all infectious diseases, there can be some under-reporting, but all reference laboratories have algorithms to assure reporting of proven cases to public health. 8.3 Lyme disease is treated with antibiotics, but there is clear evidence that prolonged treatment is of no added benefit. 8.4 Antibiotics cure some infections and save lives, but their use can lead to harm and death. Use of antibiotics contributes to increasing antibiotic resistance in bacteria, making future treatments more complicated or impossible. Antibiotics are a precious resource that must be preserved. 8.5 Laboratory testing for Lyme disease must be performed in a reputable laboratory using recommended and appropriately validated testing methods and interpretive criteria. 8.6 We strongly discourage seeking laboratory testing from non-accredited forprofit laboratories. Pursuit of such testing has led to inaccurate diagnosis, inappropriate treatment and delay in establishing the real cause of an illness. 8.7 There are many potential causes for non-specific symptoms sometimes attributed to “Chronic Lyme Disease” in people without laboratory evidence to support this diagnosis. Symptoms may be due to other treatable illnesses. - 30 About AMMI Canada Preventing, diagnosing, and treating infectious diseases The Association of Medical Microbiology and Infectious Diseases (AMMI) Canada is the national association that represents physicians, clinical microbiologists and researchers specializing in the fields of medical microbiology and infectious diseases. Through promotion of the diagnosis, prevention and treatment of human infectious diseases and by our involvement in education, research, clinical practice and advocacy, AMMI Canada aims to serve and educate the public and also to enhance the career opportunities of its members through professional development and advocacy initiatives. For further information and media inquiries, please contact: Tamara Nahal Communications Coordinator Association of Medical Microbiology and Infectious Diseases (AMMI) Canada Chronic Lyme Disease Media Statement, October 14, 2014 4 192 Bank Street, Ottawa, ON K2P 1W8 Phone: 613-260-3233 x104 Fax: 613-260-3235 [email protected] http://ammi.ca/ Chronic Lyme Disease Media Statement, October 14, 2014 5