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,” 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:
Major red flag: Unscientific medical practitioners
- Including those who market themselves using the following terminology: Lyme literate (especially those affiliated with ILADS), integrative, functional, alternative, complementary, Traditional Chinese Medicine, holistic, natural, Biological, Ayurvedic, chiropractic, naprapathic, homeopathic, anti-aging, 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.
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, mold, unsubstantiated Epstein-Barr/mononucleosis, heavy metals, protomyxzoa, WiFi sensitivity, Morgellons, and others)
- 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.
- 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 “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)
- Shopping for positive lab results from far-away labs (e.g. from Germany or the United States) that use unvalidated tests
- 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), any lab on Quackwatch’s list of “Laboratories Doing Nonstandard Laboratory Tests“.
- 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 a negative test “essentially rules out the diagnosis of Lyme disease, barring laboratory error or a rare host immune deficiency affecting humoral immunity”, according to draft recommendations by experts in infectious disease, neurology, rheumatology, and pediatrics
- 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)
- 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.
- Claiming to be “CDC positive”.
Treatment Red Flags
- Enormous amounts of drugs (including 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.)
- Non-FDA approved, disproven, or unproven treatments, including supplements, herbs, essential oils, colloidal silver, low-dose naltrexone, and homeopathy
- Look for the “Quack miranda warning”
- Infrared sauna, hyperbaric oxygen, ozone, stem cell therapy, bee venom therapy, rife or PEMF machines, hyperthermia, chelation, coffee enemas or colonics, Supportive Oligonucleotide Technique (SOT) therapy (anti-sense oligonucleotide therapy), Disulfiram, methylene blue
- Unnecessary intravenous treatments, including installation of a PICC line
- 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.
- “Detoxing,” attempts to “boost the immune system,” unnecessary diets (organic, non-GMO, gluten free, dairy free, tomato free)
- Treatment protocols named after people (e.g. Stephen Harrod Buhner, Marshall, Wiegman, William Lee Cowden, Byron White, Bill Rawls)
- Treatment longer than two months (CDC-recommended treatments are 10-28 days of generic antibiotics)
- Pulsed dosing
- Unnecessary dental work (e.g. removal of fillings)
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
- 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”
- 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,” 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
- Other conspiracy theorist beliefs (e.g. demonizing vaccines )
- Wishing that those skeptical of chronic Lyme disease be bitten by ticks and get a disease
- 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