Decades of rigorous research has resulted in an overwhelming scientific consensus about Lyme disease diagnosis and treatment.
These conclusions were reflected in an exhaustive 2010 review of the 2006 “Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis Clinical Practice Guidelines” published by the Infectious Diseases Society of America (IDSA). The review was conducted by an independent scientific panel where an independent ombudsman certified each member as being free from conflicts of interest.
The independent panel unanimously upheld each of the 2006 recommendations after holding an all-day public hearing and considering 1,025 references. Among other things, the panel concluded:
- In the case of Lyme disease, inherent risks of long-term antibiotic therapy were not justified by clinical benefit.
- To date, there is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease.
The American Academy of Pediatrics said it more simply:
“Chronic Lyme disease” is not a medical diagnosis.
Since 2010, the scientific consensus has only grown stronger. For example, the PLEASE trial joined five other major studies (four American, one European) that Lyme disease patients do not benefit from long term antibiotics. In contrast, the anti-science group ILADS admits all twelve of its recommendations are based on “very low-quality evidence”.
Of course, the vast majority of people diagnosed with chronic Lyme disease never had Lyme disease in the first place, so any treatment for presumed Lyme disease would be inappropriate. Most victims of chronic Lyme quackery have been diagnosed with multiple fake diseases, and their stories contain many red flags.
In 2010, the Healthcare Protection Agency of UK–after noting the vulnerability of patients “desperate for an explanation and possible cure for their illnesses”– issued scathing conclusions about guidelines issued by ILADS:
- The ILADS guidelines are not evidence-based and are poorly constructed.
- Application of the ILADS guidelines’ poorly defined case definitions will result in a very high risk of misdiagnosis.
- Use of ILADS guidelines’ vague treatment recommendations, including prolonged use of antibiotics, has potentially serious consequences.
- Patients misdiagnosed with Lyme disease risk losing opportunities for diagnosis and treatment of other conditions. They also risk serious physical, psychological social and financial adverse events.
Moreover, there is now compelling evidence that the duration of antibiotics can be shorter, in some circumstances, than those recommended in 2006 and 2010. These new recommendations are presented on the CDC web site and in a 2016 JAMA evidence review (pdf mirror).
🌍 Experts agree around the world 🌎
Below are medical and science groups that support the scientific consensus about diagnosing and treating Lyme disease:
- 🇺🇸 Centers for Disease Control and Prevention (CDC)
- 🇺🇸 National Institutes of Health (NIH)
- 🇺🇸 Infectious Diseases Society of America
- 🇺🇸 American Academy of Family Physicians
- 🇺🇸 American Academy of Neurology
- 🇺🇸 American College of Rheumatology
- 🇺🇸 American Academy of Pediatrics (2014 detailed guidelines)
- 🇺🇸 American Academy of Family Physicians
- 🇺🇸 American Lyme Disease Foundation (ALDF)
- 🇺🇸 Lyme MCW
- 🇺🇸 Society for Science-based Medicine
- 🌍 European Academy of Neurology (supersedes the European Federation of Neurological Societies)
- 🌍 European Centre for Disease Prevention and Control
- 🇬🇧 British Infection Association
- 🇬🇧 Public Health England
- 🇬🇧 National Institute for Health and Care Excellence (NICE)
- 🇦🇺 Statement of Australian Scientists
- 🇦🇺 Australian Government Department of Health
- 🇦🇺 Australasian College of Dermatologists
- 🌏 Royal College of Pathologists Australasia
- 🇨🇦 Association of Medical Microbiology and Infectious Disease Canada
- 🇨🇦 Canadian Association for Clinical Microbiology and Infectious Diseases
- 🇨🇦 Canadian Neurological Society
- 🇨🇦 Association des Medecins Microbiologistes Infectiologues du Quebec
- 🇨🇦 Public Health Physicians of Canada
- 🇨🇦 Canadian Paediatric Society
- 🇨🇦 College of Family Physicians of Canada
- 🇨🇦 National Collaborating Centre for Infectious Diseases (Canada)
- 🇨🇦 Public Health Canada
- 🇨🇦 Fédération des médecins spécialistes du Québec
- 🇮🇪 The Scientific Advisory Committee of the Health Protection Surveillance Centre (Ireland)
- 🇮🇪 The Infectious Diseases Society of Ireland
- 🇮🇪 The Irish Society of Clinical Microbiologists
- 🇮🇪 The Irish Institute of Clinical Neuroscience
- 🇮🇪 The Irish College of General Practitioners
- 🇧🇪 Belgian Federal Public Service Health, Food Chain Safety and Environment
- 🇧🇪 Belgian Antibiotic Policy Coordination Committee (BAPCOC)
- 🇧🇪 Belgian Society for Infectiology and Clinical Microbiology (la Société Belge d’Infectiologie et de Microbiologie Clinique, SBIMC)
- 🇧🇪 Belgian Royal Society for Rheumatology (la Société Royale Belge de Rhumatologie, SRBR)
- 🇧🇪 Flemish Society for Neurology (la Société Flamande de Neurologie, VVN)
- 🇧🇪 Belgian Society of Internal Medicine (la Société Belge de Médicine Interne, SBMI)
- 🇧🇪 Domus Medica
- 🇨🇿 Society for Infectious Diseases of the Czech Medical Association of J. E. Purkyně (English abstract)
- 🇩🇪 German Neurological Society (Deutsche Gesellschaft für Neurologie, 2012 German guidelines, additional warning to the public)
- 🇩🇪 German Dermatology Society (Deutsche Dermatologische Gesellschaft, guideline is the consensus of 22 German medical societies)
- 🇫🇷 National Academy of Medicine France (Académie nationale de médecine, see also 2016-09-20 statement)
- 🇫🇷 French High Council for Public Health (Le Haut Conseil de la santé publique)
- 🇫🇷 Health France (Santé publique France)
- 🇫🇷 The French Infectious Diseases Society (Société de Pathologie Infectieuse de Langue Française, SPILF)
- 🇫🇷 The French Association for Scientific Information (Association française pour l’information scientifique)
- 🇳🇴 Norwegian National Advisory Unit on Tick-borne Diseases
- 🇳🇴 Norwegian Directorate of Health
- 🇳🇴 Norwegian Institute of Health
- 🇳🇴 Norwegian Children’s Association (Norsk barnelegeforening)
- 🇵🇱 Polish Society of Epidemiology and Infectious Diseases
- 🇨🇭 Swiss Society of Infectious Diseases
- 🇨🇭 Swiss Society for Neurology
- 🇳🇱 Amsterdam Multidisciplinary Lyme Center (Amsterdam Multidisciplinair Lyme Centrum)
- 🇳🇱 Health Council of the Netherlands
- 🇳🇱 Dutch Society for Dermatology and Venereology (Nederlandse Vereniging voor Dermatologie en Venereologie)
- 🇳🇱 Dutch Institute for Healthcare Improvement (CBO, with 17 other medical organizations, pdf)
- 🇳🇱 National Institute for Public Health and the Environment (RIVM, Rijksinstituut voor Volksgezondheid en Milieu)
- 🇳🇱 Dutch Association for Pediatrics (Nederlandse vereniging voor Kindergeneeskunde)
- 🇩🇰 Danish Society of Infectious Diseases (Dansk Selskab for Infektionsmedicin)
- 🇩🇰 Danish Neurological Society (Dansk Neurolisk Selskab)
- 🇩🇰 Danish Dansk Selskab for Klinisk Mikrobiologi (Danish Society of Clinical Microbiology)
- 🇸🇪 Swedish Medical Products Agency
- 🇫🇮 Guideline by Finnish doctors
- 🇦🇹 🇸🇮 Evidence review by scientists in Austria and Slovenia
- 🌎 Quackwatch
Studies show scientific consensus
Connecticut, USA study
A 2010 survey of Connecticut primary care physicians found 98% indicated they neither diagnosed nor treated presumed chronic Lyme disease.
In 2010, Dr. Sue O’Connell, a microbiologist who headed the Health Protection Agency Lyme Borreliosis Unit in the UK, performed a survey of Lyme diagnosis and treatment guidelines from 16 groups of medical experts in Europe and North America. She noted:
There is overall agreement regarding the clinical features of Lyme borreliosis and on the requirement for supporting laboratory evidence of a clinical diagnosis of later-stage infection. Two-tier serological testing, with immunoblot as a second-stage test, is currently recommended in most guidelines and reviews.
No evidence-based European or North American guideline recommends prolonged or multiple courses of antibiotics for persistent symptoms following previously treated Lyme disease.
In 2018, a French review of European and American Lyme diagnostic guidelines noted “a global consensus.” This review concluded:
Contrary to the intense debate taking place on the Internet and in the European and American media, our analysis shows that the great majority of medical scientific guidelines with a high quality score, agree on the clinical diagnostic methods of Lyme disease.
Of the 16 guidelines reviewed in 2018 from 7 countries, only the guidelines of the pseudoscience group German Borreliosis Society (Deutsche Borreliose-Gesellschaft, DBG) were an outlier. DBG’s guidelines received the lowest quality score, 1. Similar to its America-based counterpart ILADS but unlike mainstream organizations, DBG recommended non-standard testing and defined a “chronic stage” of Lyme disease.
Presumably ILADS is not in the French review because it does not have any published diagnostic guidelines.
Other good sources
- U of Rhode Island TickEncounter Resource Center
- State and province public health departments
- Science-based doctors board certified in infectious disease, neurology, rheumatology, psychiatry, dermatology, pediatrics, and Allergy and Immunology
- Medical Child Abuse and “Chronic Lyme”
- Good journalism on “Chronic Lyme disease”
- Doctor and scientist commentaries on “Chronic Lyme”
- Papers on “Chronic Lyme disease”
- Papers describing a massive number of false positive Lyme diagnoses
- How “Chronic Lyme” recruits followers
- The harms of unnecessary “Lyme anxiety”
- Video: How fake medicine fools us
- From quack to science advocate: Personal journeys
A 2004 study of web sites about Lyme disease revealed many that promoted inaccurate information. Web sites with information determined to be inaccurate tended to have the word “Lyme” in their names and included LymeDisease.org, IgeneX, ILADS, and Lyme Disease Association.
Sadly, the epidemic of misinformation about Lyme disease has only grown since 2004.
In 2017, March for Science had to cut ties with a pseudoscience group that falsely claimed to be representative of Lyme patients.
In 2018, scientists in the Department of Dermatology at Johns Hopkins University reported that sites such as Lymedisease.org are spreading inaccurate information about Bartonella, which is not a tick-borne disease or coinfection of Lyme disease.
We recommend avoiding the following groups:
- International Lyme and Associated Diseases Society (ILADS) [see the review from the UK’s Health Protection Agency]
- Global Lyme Alliance
- Bay Area Lyme
- Lyme Disease Association
- NatCapLyme- The National Capital Lyme Disease Association
- Lyme Innovation
- PA Lyme Resource Network
- Lyme Action Network
- Colorado Tick-Borne Disease Awareness Association
- LivLyme Foundation
- Focus on Lyme
- Partnership for Tick-borne Diseases Education and Lymecme.info
- Project Lyme
- The Mayday Project
- Midcoast Lyme Disease Support & Education
- Lyme Society, Inc.
- Florida Lyme Disease Association
- Lyme Connection
- LymeLight Foundation
- Twin Cities Lyme Foundation
- Alex Hudson Lyme Foundation
- Lyme Treatment Foundation
- The Steven & Alexandra Cohen Foundation
- The Lyme Center
- The Mighty
- Institute for Functional Medicine
- American Academy of Environmental Medicine
- American Board of Integrative Holistic Medicine
- American Academy of Anti-Aging Medicine (A4M)
- Association of American Physicians and Surgeons
- CanLyme – Canadian Lyme Disease Foundation
- Canadian Lyme Science Alliance (CLSA) and Canadian Lyme Consortium
- Association québécoise de la maladie de Lyme (AQML)
- Caudwell LymeCo
- Lyme Disease UK
- Lyme Disease Action UK
- Academy of Nutritional Medicine (AONM)
- Karl McManus Foundation
- German Borreliosis Society (Deutsche Borreliose-Gesellschaft)
- Fédération Française contre les Maladies Vectorielles à Tiques (FFMVT)
- France Lyme
- NorVect – The Nordic Network for Vector-borne Diseases
- Lyme Disease Association of Australia [There is no compelling evidence you can contract real Lyme disease in Australia.]
- MSIDS Inc.
- The International Society for Environmentally Acquired Illness (ISEAI)
- Any other so-called Lyme patient group (other than this web site and the ALDF)
- Lyme community videos such as Under Our Skin
- Unscientific medicine practitioners, including those who market themselves using the following terminology: Lyme literate, integrative, functional, alternative, complementary, Traditional Chinese Medicine, holistic, natural, Biological, Ayurvedic, chiropractic, naprapathic, homeopathic, anti-aging, and naturopathic.
- Any organization listed by Quackwatch in their list of questionable organizations
- Academic centers that receive substantial funding and other support from chronic Lyme advocates, including:
- Columbia University Lyme and Tick-Borne Diseases Research Center
- University of New Haven Lyme Disease Research Group
- The Dean Center for Tick Borne Illness
- Mount Allison University Lyme Research Network
- G. Magnotta Lyme Disease Research Lab at University of Guelph