Decades of rigorous research has resulted in an overwhelming scientific consensus about Lyme disease diagnosis and treatment.

The scientific consensus has been affirmed by scientific reviews in the British Medical Journal and the Journal of the American Medical Association, and by medical and scientific groups around the world.

Additionally, an independent scientific panel conducted an exhaustive review of the science in 2010. The panel held an all-day public hearing and considered 1,025 references. An independent ombudsman certified each panel member as being free from conflicts of interest.

The independent panel unanimously upheld each of the recommendations made by the Infectious Diseases Society of America (IDSA) in 2006.  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.

As of 2020, there are six randomized controlled trials showing that Lyme disease patients do not benefit from long term antibiotics.

Those with “chronic Lyme” rarely had real Lyme

The pseudoscientific diagnosis called “chronic Lyme” should not be confused with symptoms stemming from authentic Lyme disease, including Lyme arthritis and post-treatment Lyme disease syndrome. 

The vast majority of people diagnosed with chronic Lyme disease never had Lyme infection in the first place. Therefore, any treatment for presumed Lyme disease would be inappropriate.

According to experts:

There are few better examples of health care fraud than the promotion of so called “chronic Lyme disease.”

Chronic Lyme stories typically exhibit many red flags, such as:

  • diagnosis via pseudoscience practitioner (e.g. “Lyme literate”, functional, integrative, or naturopathic),
  • non-specific symptoms inconsistent with Lyme disease,
  • a belief that an infection occurred years earlier,
  • diagnosis in an area where real Lyme is rare or non-existent,
  • multiple fake diagnoses, like alternate-universe versions of Bartonella and Babesia that bear no resemblance to the real infections,
  • testing that is not positive or that uses unproven methodology,
  • outrageous treatment regimens, and
  • others listed on our red flags page.

Scientists from the UK emphasize:

The epidemiology of so-called ‘chronic Lyme’ is more characteristic of a cultural phenomenon than an infectious disease. Public interest in Lyme disease has increased considerably due to ‘celebrity’ cases and discussion on social media.

False positive Lyme disease diagnoses are very common, as found in a number of studies, including an exhaustive review of 14 years of visits to an infectious diseases clinic of the Johns Hopkins University School of Medicine.

Results of 1261 patients who visited Johns Hopkins for presumptive Lyme disease from 2000 to 2013: 72% had no Lyme disease, but 84% of the patients with no Lyme disease received unnecessary antibiotics

ILADS Guidelines: “Potential harms”, “Not evidence-based”

The anti-science group ILADS admits all twelve of its 2014 recommendations are based on “very low-quality evidence”.

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 by the IDSA in 2006 and 2010. These new recommendations are presented on the CDC web site, in a 2016 JAMA evidence review (pdf mirror), and in the 2019 IDSA Draft Lyme guidelines.

🌍 Experts agree around the world 🌎

Below are medical and science groups that support the scientific consensus about diagnosing and treating Lyme disease:

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.

British Study

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.

and:

No evidence-based European or North American guideline recommends prolonged or multiple courses of antibiotics for persistent symptoms following previously treated Lyme disease.

French Study

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 no published diagnostic guidelines were available.

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

LymeScience resources

Sources to avoid because they deny the scientific consensus

The harmful chronic Lyme movement started in the late 1980s and was described as a cult in a 2001 New York Times story

A 1991 article in Harvard Health Letter provides a description of “Lymeys” that still fits today:

Lymeys are unified by their belief that infection with the Lyme agent is the cause of their symptoms and by a general mistrust of standard medicine and its limitations. Many of them shun treatment at major medical centers known for research on Lyme disease. Instead, following what they read in the newsletters, some Lymeys travel great distances to consult self-appointed specialists with dubious credentials.

These doctors often prescribe intravenous antibiotic regimens lasting for months or, in extreme cases, years, at a cost of literally hundreds of thousands of dollars. Acting on physicians’ orders, private companies will administer intravenous drugs in patients’ homes. Some of these companies advertise their services in Lymey newsletters, help pay the publications’ costs, and publicize support groups.

Decades later, the bizarre beliefs of the “Lymeys” have been disproven over and over. Nevertheless, the chronic Lyme movement has supersized thanks to the internet, social media, celebrities, the wealthy, politicians, and quacks.

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 known tick-borne disease in North America or coinfection of Lyme disease.

The easiest way to determine if an entity is dedicated to dangerous chronic Lyme pseudoscience is if it refers patients to predatory “Lyme literate” doctors or other practitioners of unscientific medicine (see below).

We recommend avoiding the following:

  • International Lyme and Associated Diseases Society (ILADS)  [see the review from the UK’s Health Protection Agency]
  • LymeDisease.org and MyLymeData
  • Global Lyme Alliance
  • Bay Area Lyme Foundation (and associated entities Center for Lyme Action, Lyme Disease Biobank, and LaureL STEM foundation)
  • Lyme Disease Association
  • IgeneX
  • NatCapLyme- The National Capital Lyme Disease Association
  • Stand4Lyme
  • Lyme Innovation
  • PA Lyme Resource Network
  • Lyme Action Network
  • Colorado Tick-Borne Disease Awareness Association
  • LivLyme Foundation
  • Focus on Lyme
  • Twin Cities Lyme
  • Central New York Lyme and Tick-Borne Alliance
  • Ride Out Lyme
  • Lyme Education Awareness Foundation (LEAF)
  • Lyme Disease Awareness Foundation
  • Partnership for Tick-borne Diseases Education and Lymecme.info
  • Partner in Lyme
  • Project Lyme and Generation Lyme
  • The Avril Foundation
  • Lyme Stats
  • Mothers Against Lyme
  • Lyme Disease Foundation (Not to be confused with the science-based organization American Lyme Disease Foundation)
  • The Mayday Project
  • MSIDS Research Foundation
  • Midcoast Lyme Disease Support & Education
  • Lyme Society, Inc.
  • Florida Lyme Disease Association
  • Lyme Connection
  • LymeLight Foundation
  • LymeHope
  • Children’s Lyme Disease Network
  • Twin Cities Lyme Foundation
  • Minnesota Lyme Association
  • Alex Hudson Lyme Foundation
  • Chai for Lyme
  • Lyme Treatment Foundation
  • The Steven & Alexandra Cohen Foundation and TicksSuck.org
  • Southern Tier Lyme Support
  • The Lyme Center
  • MaineLyme
  • LymeTV
  • LymeBasics.org, formerly Lyme Disease Association of Southeastern Pennsylvania (LDASEPA)
  • LymeLilli Foundation
  • Lyme Association of Greater Kansas City, Inc
  • Sam’s Spoons Foundation
  • Lyme Disease Challenge
  • Wisconsin Lyme Network
  • The Mighty
  • Open Medicine Institute & Howard Young Foundation’s Tick-Borne Illness Center of Excellence
  • Invisible International
  • Tick Wise Education
  • BioNeoMed Research Foundation
  • 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
  • American College for Advancement in Medicine (ACAM)
  • CanLyme – Canadian Lyme Disease Foundation
  • Canadian Lyme Science Alliance (CLSA) and Canadian Lyme Consortium
  • Association québécoise de la maladie de Lyme (AQML)
  • Enfance Lyme Québec
  • Caudwell LymeCo
  • Lyme Disease UK
  • Lyme Disease Action UK
  • Lyme Resource Centre Scotland
  • Academy of Nutritional Medicine (AONM)
  • Tick Talk Ireland
  • Karl McManus Foundation
  • German Borreliosis Society (Deutsche Borreliose-Gesellschaft)
  • Chronimed
  • Fédération Française contre les Maladies Vectorielles à Tiques (FFMVT)
  • France Lyme
  • Le droit de guérir
  • Lyme-Int
  • Associazione Lyme Italia e coinfezioni
  • NorVect – The Nordic Network for Vector-borne Diseases
  • Global LymeXpert Group
  • Lyme Disease Association of Australia  [There is no compelling evidence you can contract real Lyme disease in Australia.]
  • MSIDS Inc.
  • PANDIS
  • Australian Chronic Infectious and Inflammatory Disease Society (ACIIDS, formerly Australian Chronic Infectious Disease Society, ACIDS)
  • Tick-borne Illness Community Network Australia Inc (TICNA)
  • The International Society for Environmentally Acquired Illness (ISEAI)
  • PolyBio Research Foundation
  • Charles E. Holman Morgellons Disease Foundation
  • Any other so-called Lyme patient group (other than this web site and the ALDF)
  • Videos produced by chronic Lyme conspiracy theorists, 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:
    • Brian Fallon’s Columbia University Lyme and Tick-Borne Diseases Research Center
    • LymeMIND and The Institute for Next Generation Healthcare at Icahn School of Medicine at Mount Sinai Health System
    • Ying Zhang’s group at Johns Hopkins University
    • Kim Lewis’s group at Northeastern University
    • Eva Sapi’s 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
    • The group at Duke University formerly associated with Neil Spector
  • Publications by chronic Lyme advocates or authors funded by them, especially ones published in predatory or low-tier journals like Dove Medical Press, Frontiers, and MDPI.

Updated November 17, 2020