Pediatrician discusses alarming “chronic Lyme” abuse of a young boy

A doctor encountered a boy who received pseudoscientific chronic Lyme diagnoses and treatments. Sadly, charlatans who claim to the integrative, functional, or “Lyme literate” are frequent perpetrators of Medical Child Abuse.

In this case, the doctor reported three phenomena we see frequently:

  1. The boy received multiple fraudulent diagnoses, called “co-infections” in the vernacular of the chronic Lyme movement.
  2. The boy’s parents absorbed the pseudoscientific beliefs of the chronic Lyme movement so thoroughly that they became angry at the mainstream doctor for not respecting their quackery.
  3. The boy was not only physically abused with months of unnecessary antimicrobial drug treatments, but he was prescribed non-FDA approved supplements as well. These treatments are typical red flags.

It’s clear that primary care providers need support to address misinformation that is causing Medical Child Abuse.

The doctor anonymously detailed his experience in the following 2011 letter, published in the journal Pediatrics:

Lyme and you

The other day, I received a gentle letter of reprimand from the parents of a former patient of mine. I had seen their son for persistent fatigue and had been dubious of the diagnosis of chronic Lyme disease.

After seeing me, the family opted to pursue care with another health care provider. The letter reported that the son had subsequently been diagnosed with chronic versions of several concomitant tick borne illnesses including Lyme and that after months of continuous antibiotic therapy and nutritional supplements was finally back to normal.

While I was happy the boy was feeling better, I could not help but wonder about what drives medical practice. As reported in The Chicago Tribune (December 8, 2010: Health), Lyme disease is real. The problem lies in telling people with vague or very atypical symptoms such as back pain that they may have a chronic form of Lyme disease.

Any web search will unearth thousands of testimonials from individuals with previously unrecognized chronic Lyme disease whose vague signs and symptoms were cured after months or even years of antibiotics or other therapy. Patients suspicious of physicians or the Centers for Disease Control, flock to practitioners willing to listen and prescribe months of therapy.

Data does not seem to matter. Despite both the Infectious Diseases Society of America and the American Academy of Neurology concluding that no convincing biologic evidence of chronic Lyme disease exists, a New Jersey congressman, on behalf of nonprofit Lyme groups, entered into the Congressional Record, a chastisement of the Institutes of Medicine for a lack of objectivity about chronic Lyme.

The data against therapy for chronic Lyme disease is compelling. Four randomized double-blind placebo controlled trials have examined the topic. Only in one trial that was not well-blinded did patients report any benefit to chronic antibiotic therapy, possibly due to them figuring out they were receiving medication.

Moreover, in one study, almost 25 percent of patients receiving antibiotics experienced complications. The power of anecdotes, however, often trumps science.

I understand that patients with chronic illness are desperate for both an answer and a cure and, to me, seem willing to accept unnecessary risks. Personally, I did not know what to write to the parents of my former patient other than thank you for the update and that I was glad he was doing well.

Letter by WVR, MD appended to “Early Experiences and Predictors of Recruitment Success for the National Children’s Study“. Pediatrics. 2011. [PDF]

Formatting, including relevant hyperlinks, was added by LymeScience.