Red flags of chronic Lyme quackery

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Health professionals worry about patients who are being diagnosed with fake diseases and who are pursuing unproven and disproven therapies.

Many of these victims 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 different geography of Lyme vs chronic Lyme

List of Red Flags

Diagnosis Red Flags

  • 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, and naturopathic.
    • Including members of organizations listed as “questionable” by Quackwatch
  • Doctor shopping (including traveling a long distance to a “Lyme specialist”)
  • Implausible coinfections (MSIDS, Bartonella, chronic babesia, chronic ehrlichia, tick-borne mycoplasma, mold, 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
  • A belief that one or more infections occurred many years earlier, or even in utero
  • Unvalidated tests (e.g. CD57, urine tests, Live blood cell analysis, proprietary interpretations of standard tests, electrodermal devices)
  • 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 (formerly known as Infectolab), Australian Biologics, Melisa Labs, Moleculera Labs (Cunningham Panel), R.E.D. Labs, Immunosciences Lab, 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 tests
  • Relying on low quality evidence such as non-human studies, anecdotes, and studies without control groups
  • 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)
  • 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

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
  • Infrared sauna, hyperbaric oxygen, ozone, stem cell therapy, bee venom therapy, rife or PEMF machines, coffee enemas or colonics
  • Unnecessary intravenous treatments, including installation of a PICC line
  • A belief that they are “herxing” 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 longer than two months (CDC-recommended treatments are 10-28 days)
  • Unnecessary dental work (e.g. removal of fillings)

Social and Identity Red Flags

  • Adopting the “Lyme warrior” identity
  • Multiple family members with dubious diagnoses
  • Hostility towards science-based medicine, infectious disease experts, and organizations like the CDC
  • Protecting “Lyme literate” doctors (cult leaders aka LLMDs) at all costs, including not mentioning the name of their doctor
  • Starting 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”
  • Promoting false and misleading information about Lyme disease
  • 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

More resources:

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