Health professionals worry about patients who receive false diagnoses and who are pursuing unproven and disproven therapies.
Real infections have been hijacked by a pseudoscientific belief system, so it’s difficult to determine what is true and not true.
Advocates for the false “Chronic Lyme” diagnosis know that mainstream science doesn’t recognize it, so they will often use other terminology like “persistent Lyme”, “late stage Lyme,” “Lyme borreliosis complex,” “Lyme+”, “Long Lyme,” or just Lyme.
Many stories of false chronic Lyme diagnosis exhibit red flags, which are listed below. However, just because there is a noticeable red flag, it does does not necessarily mean a diagnosis or treatment is inappropriate.
Quotes from healthcare organizations:
Antibiotics are the only known effective treatment for Lyme disease, but a quick search on the internet will introduce you to other untested remedies that claim to cure Lyme disease or chronic Lyme disease. These products—available online or from some health care providers—may be dangerous, deadly, or simply a waste of money.
— CDC (Alternative treatments)
We sympathize with patients who suffer from the wide array of symptoms that have been attributed by some to be due to so-called “chronic” Lyme disease, but we are concerned that most of these patients have been improperly diagnosed and may be receiving a treatment, i.e., long-term antibiotic therapy, that will do them more harm than good.
— Infectious Diseases Society of America (IDSA Letter to Congress, 2009)
Major red flag: “Chronic Lyme” where real Lyme is rare or non-existent
Chronic Lyme is a social phenomenon spread by word of mouth and the Internet. Thus, chronic Lyme is not restricted to areas where ticks transmit the curable Lyme infection.
With real Lyme disease, 95% of reported US cases are in 14 states, mostly in the Northeast, mid-Atlantic, and Upper Midwest.
Healio’s excellent article on the misnomer of chronic Lyme disease features this graphic illustrating the stark difference in geography between confirmed Lyme cases and chronic Lyme support groups:
The United States has exported its conspiracy theories about Lyme disease to many countries, including Canada, France, Germany, and Turkey. Thousands of people have received false diagnoses in Australia, where there is no endemic Lyme disease.
Major red flag: Unscientific medical practitioners
- Including those who market themselves using the following terminology: Lyme literate (especially those affiliated with ILADS and ISEAI), integrative, functional, alternative, complementary, Traditional Chinese Medicine, holistic, natural, Biological, Ayurvedic, chiropractic, naprapathic, homeopathic, anti-aging, regenerative (private practice), environmental (private practice), and naturopathic.
- Including members of organizations listed as “questionable” by Quackwatch, such as the American Academy of Environmental Medicine.
- A surprising number have had a personal experience where themselves or a loved one received a fictional diagnosis.
- They frequently profit from sales of unproven or disproven treatments like herbs and supplements, a practice that naturopathic whistleblower Britt Hermes deemed unethical.
- Treatments may be marketed for unrelated diseases, for example both Lyme disease and cancer.
A warning from Dr. James Hamblin, MD, preventive medicine physician and staff writer at The Atlantic:
There aren’t many absolutes in medicine but one is never trust a doctor who has their own line of dietary supplements.
Diagnosis Red Flags
- Doctor shopping (including traveling a long distance to a “Lyme specialist”)
- Implausible coinfections (MSIDS, Bartonella, chronic babesia, chronic ehrlichia, tick-borne mycoplasma, “toxic mold” (aka biotoxin illness or CIRS-Chronic Inflammatory Response Syndrome), unsubstantiated Epstein-Barr/mononucleosis, heavy metals, protomyxzoa, WiFi/EMF sensitivity, Morgellons, and others)
- Claiming that harmless stretch marks or neuropsychiatric symptoms are a bartonella infection
- Claiming that “air hunger” and shady antibody tests (rather than PCR or visual observation of a blood smear performed in a mainstream lab) are sufficient to diagnose Babesiosis
- Unsubstantiated claims of Mast Cell Activation Syndrome (MCAS, see consensus, and paper)
- Coinfections that aren’t transmitted together, that are rare, and would be readily treated if real
- Claiming to have contracted Lyme disease in a location where Lyme disease is rare or non-existent
- A long list of non-specific symptoms attributed to Lyme disease, including useless questionnaires distributed by chronic Lyme advocates
- Attempting to blame an established disease or disorder on Lyme disease, despite no link
- “Lyme literate” charlatans have defrauded and abused people with Multiple sclerosis, ALS, autism, Parkinson’s, Alzheimer’s, auto-immune diseases, and many other conditions.
- Medically unexplained physical symptoms, such as chronic fatigue syndrome and fibromyalgia, are frequently falsely blamed on Lyme disease.
- Claiming that mental health symptoms are evidence of Lyme disease (Experts agree: “No studies suggest a convincing causal association between Lyme disease and any specific psychiatric conditions.”)
- Ignoring a plausible diagnosis from mainstream medical providers
- A belief that one or more infections occurred years earlier, or even in utero
- The longer someone has had symptoms, the less likely Lyme is to be the culprit. (source)
- Unsubstantiated claims of being immunocompromised, or that Lyme has caused immunosuppression or “B-cell AIDS”
- Unvalidated tests (e.g. CD57, urine tests, Lymphocyte Transformation Tests (LTT), ELISpot, Live blood cell analysis, Phelix Phage test, proprietary interpretations of standard tests, electrodermal devices that use skin conductance or impedance like Meridian Stress Assessment (MSA) and ZYTO, Visual Contrast Sensitivity testing (VCS))
- Shopping for positive lab results from far-away labs (e.g. from Germany or the United States) that use unvalidated tests
- Any other testing that is not FDA-cleared and CDC-recommended (with the exception of mainstream European testing appropriately used for suspected European Lyme)
- Definitive clinical diagnosis of late Lyme disease without supporting mainstream testing
- Tests from any of the following labs: IgeneX, DNA Connexions, Galaxy Diagnostics, Medical Diagnostic Laboratories (MDL), Milford Molecular Diagnostics Laboratory, Advanced Lab*, Fry Laboratories, Ceres Nanosciences (Nanotrap), Global Lyme Diagnostics*, Pharmasan Labs (iSpot Lyme)*, Coppe Laboratories (myLymeTest), ArminLabs, BCA-Lab (also known as InfectoLab), Australian Biologics, Melisa Labs, Moleculera Labs (Cunningham Panel), R.E.D. Labs, Immunosciences Lab, Aperiomics*, Te?ted Oy (Tezted Limited, TICKPLEX), Lyme Diagnostics Ltd. (DualDur cell technology), Phelix, ProGene (DX Genie), Ionica Sciences (IonLyme), T Lab Inc, Veramarx, Vibrant America/Vibrant Wellness, Research Genetic Cancer Centre (RGCC)/Biocentaur (PaLDiSPOT, PrimeSpot), Deutsches Chroniker Labor (B16+ test), Nordic Laboratories, any lab on Quackwatch’s list of “Laboratories Doing Nonstandard Laboratory Tests“. (Starred labs are defunct)
- Multiple Lyme and/or other tick-borne disease tests performed more than 6 weeks after symptoms appeared
- Ignoring or misinterpreting non-positive antibody tests. Examples include:
- Using the IgM Western blot test more than 30 days after the appearance of symptoms
- Ignoring or failing to perform the first tier ELISA test
- Misinterpreting fewer than 5 bands on the IgG Western blot as positive (especially band 41, which is commonly positive in healthy people)
- Interpreting faint (but negative) Western blot bands as positive
- Using non-standard Western blot bands such as bands 31 and 34
- Ignoring a negative test based on false rumors about the test performance, given that “Immunoglobulin G (IgG) seronegativity in an untreated patient with months to years of symptoms essentially rules out the diagnosis of Lyme disease, barring laboratory error or a rare humoral immunodeficiency state.”, according to the 2020 consensus guidelines.
- Misinterpreting persistent antibodies as persistent infection after a cured infection or asymptomatic infection that the immune system cleared on its own
- A diagnosis that involves a psychic, energy healer, shaman, or practitioner of muscle testing (aka ART-Autonomic Response Testing or applied kinesiology)
- Claiming that a patient must perform a ritual (e.g. exercise) to provoke and bring out the bacteria prior to testing
- Inappropriate use of medical imaging (e.g. SPECT scans or dark field microscopy aka Live Blood Analysis)
- Claiming that Lyme is transmitted sexually, congenitally, via breast milk, or any other method other than via a black legged tick
- Falsely claiming that CDC-recommended testing is not for diagnosis and only for surveillance (rather than for both, as is the reality)
- Mixing anti-vaccine and Lyme conspiracy theories to support a diagnosis
- Falsely claiming that CDC-recommended testing was changed because of the Lyme disease vaccine (It was not changed at all)
- Falsely claiming that vaccines cause or trigger Lyme disease
- Claiming to be “CDC positive”
Treatment Red Flags
- Bizarre drug regimens (including non-standard antibiotics)
- Long-term antibiotics
- An overwhelming scientific consensus supports 10-28 days of generic antibiotics for Lyme disease. On rare occasions, a second course is used “with objective signs of relapse” (e.g. arthritis, meningitis, or neuropathy), as discussed in the 2020 consensus guidelines.
- Further, the 2020 consensus guidelines state: “For patients who have persistent or recurring nonspecific symptoms such as fatigue, pain, or cognitive impairment following recommended treatment for Lyme disease, but who lack objective evidence of reinfection or treatment failure, we recommend against additional antibiotic therapy (strong recommendation, moderate-quality evidence).“
- “Pulsed dosing in which antibiotics are given on some days but not on other days” († quoted from box 2 of a 2016 review)
- “Multiple repeated courses of antibiotics for the same episode of Lyme borreliosis”†
- “Combinations of antibiotics”†
- “First-generation cephalosporins, such as cephalexin, benzathine penicillin G, fluoroquinolones, carbapenems, vancomycin, metronidazole [aka Flagyl], tinidazole, trimethoprim-sulfamethoxazole [aka Bactrim], amantadine, ketolides, isoniazid, rifampin or fluconazole”†
- Disulfiram (aka Antabuse)
- Methylene blue
- Loratadine (aka Claritin)
- Anti-parasitic drugs such as Nitazoxanide (aka Alinia) and Ivermectin
- Hydroxychloroquine, except when used for post-antibiotic Lyme arthritis
- Drugs recommended based on non-human studies, especially those funded by CLD advocates or those peddling treatments for CLD
- Long-term antibiotics
- Spending a substantial sum of money on chronic Lyme treatments and fundraising for them (The cost of real Lyme treatment is typically less than $50 or covered by insurance)
- Non-FDA approved, disproven, or unproven treatments, including: nutritional supplements, herbs, essential oils, colloidal silver, low-dose naltrexone, and homeopathy
- Look for the “Quack miranda warning“
- Examples of supplement/herbal snake oil include Samento/Cat’s Claw, cryptolepis, garlic/allicin, teasel root, monolaurin, Japanese knotweed, berberine, Chinese skullcap, oil of oregano, stevia, serrapeptase, NAC (n-acetyl cysteine), and curcumin/tumeric
- strange electrical devices (rife machines, PEMF, BioCharger, AmpCoil, detox foot baths, Healy, bioresonance, frequency)
- Infrared sauna, hyperbaric oxygen, ozone, stem cell therapy, exosomes, bee venom therapy, drinking urine, hyperthermia, chelation, coffee enemas or colonics, Supportive Oligonucleotide Technique (SOT) therapy (anti-sense oligonucleotide therapy), peptide therapy, IVIG (intravenous immunoglobulin), Induced Native Phage Therapy (INPT), ultraviolet light treatments (UVLrx), Lyme laser treatments, plasmapheresis and attempts to “clean” the blood, Insulin Potentiation Therapy (IPT)
- Unnecessary intravenous treatments, including installation of a PICC line
- Including IV vitamins such as glutathione, NAD+, vitamin C, and Myers cocktail
- A belief that “herxing” is occurring when this is implausible, for example not being within 24-48 hours of taking antibiotics for the first time.
- Claims that various quack-diagnosed conditions (often called co-infections) need to be treated one at a time rather than simultaneously. An example from one chronic Lyme cult member: “Now I’m paying out of pocket for an LLMD. She found so many other things that she is having to take into account in my treatment. We’re going to have to repair my immune system before attacking Lyme and repair my hormones and thyroid.”
- “Detoxing,” attempts to “boost the immune system,” unnecessary diets (organic, non-GMO, gluten- free, dairy-free, tomato-free, paleo, sugar-free)
- Treatment protocols named after people (e.g. Stephen Harrod Buhner, QingCai Zhang, Trevor Marshall, Wiegman, William Lee Cowden, Byron White, Bill Rawls, )
- Unnecessary dental work (e.g. removal of fillings)
- Advocacy for more than a single dose of doxycycline after a tick bite where there are no signs of tick-caused illness. Experts only recommend a single dose of doxycycline for high-risk attachments.
Social and Identity Red Flags
- Adopting the “Lyme warrior” identity
- Multiple family members with dubious diagnoses, including a child who may become a victim of Medical Child Abuse
- Hostility towards science-based medicine, infectious disease experts, and organizations like the CDC
- Relying on low quality evidence such as non-human studies, anecdotes, and studies without control groups
- Referencing doctors and scientists who are financially invested in chronic Lyme disease. They may receive funding from chronic Lyme advocacy groups, be chronic Lyme patients themselves, or make money selling selling tests and treatments.
- Protecting “Lyme literate” doctors (cult leaders aka LLMDs) at all costs, including not mentioning the name of their doctor
- Starting or contributing to a web site, organization, or social media page to raise “awareness” and evangelize for chronic Lyme disease
- Encouraging everyone to watch propaganda videos such as “Under Our Skin” and The Quiet Epidemic
- Trying to convince sick people that they have Lyme disease and referring them to “Lyme literate” quacks, dubious testing, and snake oil treatments
- Promoting false and misleading information about Lyme disease
- Talking about “biofilms,” “persisters,” intracellular, or “cyst forms,” which are not real problems with Lyme disease
- Receiving medical advice from an individual who also received one or more dubious diagnoses
- Promoting government policies and legislation that support chronic Lyme quackery and hobble consumer protection laws
- Other conspiracy theorist beliefs (e.g. demonizing vaccines, especially the safe and effective Lyme vaccine Lymerix)
- Wishing that those skeptical of chronic Lyme disease be bitten by ticks and get a disease
- Inappropriately comparing Lyme disease to other health issues, such as AIDS, cancer, tuberculosis, syphilis, and acne.
- Using the term “remission” in relation to Lyme disease (which is an easily cured infection in reality)
- Promoting videos or photos of treatment regimens (See photo of reality TV personality Yolanda Hadid for an example.)
- Including saving treatment paraphernalia such as pill bottles or syringes for purposes of drawing attention.
- Developing or joining a for-profit business selling chronic Lyme quackery
- Examples include joining an MLM scheme and partnering with or becoming a “Lyme literate” practitioner
Dr. Edzard Ernst: Six signs you are being treated by a quack
Dr. Steven Novella: The Bait and Switch of Unscientific Medicine
Dr. David Weinberg: Anecdotes: Cheaper by the Dozen
Sci-ence.org: Red flags of quackery
The Logic of Science: The hierarchy of evidence: Is the study’s design robust?
Dr. Harriet Hall: How to Talk to People About CAM
Hormones Demystified: Top 10 Reasons Why Smart People Are Stupid About Their Health
Janja Lalich, Ph.D. & Michael D. Langone, Ph.D.: Characteristics Associated With Cults
Review by Allen Steere and colleagues: Lyme borreliosis (See Box 2: Therapies not recommended for Lyme borreliosis or PTLDS)
Review by Paul Lantos and colleagues: Unorthodox alternative therapies marketed to treat Lyme disease
Updated May 11, 2023