Red flags of chronic Lyme quackery

posted in: Science vs myths | 0

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)

List of 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.
  • Implausible coinfections (e.g. MSIDS, Bartonella, chronic babesia, chronic ehrlichia, tick-borne mycoplasma, mold, heavy metals, protomyxzoa, WiFi sensitivity, or Morgellons diagnoses)
  • Adopting the “Lyme warrior” identity
  • Fundraising for chronic Lyme treatments (The cost of real Lyme treatment is typically less than $50.)
  • 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
  • Doctor shopping (including traveling a long distance to a “lyme specialist”)
  • Enormous amounts of drugs (including antibiotics)
  • Disproven or unproven treatments, including supplements, herbs, and homeopathy
  • Infrared sauna, hyperbaric oxygen, ozone, bee venom therapy
  • Unnecessary intravenous treatments, including installation of a PICC line
  • A belief that they are “herxing” when not within 24-48 hours of taking antibiotics for the first time.
  • Detoxing” or unnecessary diets (organic, non-GMO, gluten free, dairy free, tomato free)
  • Treatment longer than two months (CDC-recommended treatments are 10-28 days)
  • Multiple family members with dubious diagnoses
  • 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)
  • 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, ArminLabs, BCA-Lab (formerly known as Infectolab), Australian Biologics, Melisa Labs, R.E.D. Labs
  • Ignoring or misinterpreting non-positive tests
  • Relying on low quality evidence such as non-human studies, anecdotes, and studies without control groups
  • Hostility towards science-based medicine, infectious disease experts, and organizations like the CDC
  • Protecting “Lyme literate” doctors (cult leaders) 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
  • Posting videos or photos of treatment regimens
  • Encouraging everyone to watch propaganda videos such as “Under Our Skin”
  • Promoting false and misleading information about Lyme disease
  • Unnecessary dental work (e.g. removing fillings)
  • A diagnosis that involves a psychic, energy healer, shaman, or practitioner of muscle testing (aka ART-Autonomic Response Testing or applied kinesiology)
  • Other conspiracy theorist beliefs (e.g. demonizing vaccines)

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?