Lyme disease is also an Online Hazard

When I was checking some information for last month’s column on hepatitis, I came

across the Borland-Groover Clinic web site. A large banner at the top of their page read, “Web

Warning: We have found most hepatitis discussion sites on the web to be a waste of time, or

worse.” That’s a warning that should be posted for more health-related web sites, including

those sites devoted to everyone’s favorite backyard menace, Lyme disease.

Summer has arrived, and with it has come the annual burst of media stories about Lyme

disease, tick checks and DEET-based repellents. (At the end of May, I counted 516 such stories

on Google News.) These stories follow a similar pattern: a “victim” of Lyme disease describes a

long list of bizarre and painful symptoms that have persisted for years, an endless quest for more

and more antibiotics from reluctant doctors, and finally the loss of medical insurance and

personal savings. Readers and viewers are then directed to web sites and organizations where

they will find similar frightening anecdotes.

Lyme disease is a bacterial infection transmitted by deer ticks. It is widespread in the

United States; so far this year the Centers for Disease Control have counted 3,686 cases. In

Maryland, there have been 192 reported infections. Fortunately, Lyme infections are not

contagious, not fatal and respond to antibiotics. Most of us unlucky enough to be bit by a tick

can expect a distinct skin rash and “flu-like” symptoms. About ten percent of patients may have

lingering arthritic or neurological complications though such complications are not unique to

Lyme infections.

What is unique about Lyme infections is the level of hysteria they can generate. The

Internet is full of personal anecdotes and wildly inaccurate information. Many online Lyme

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support groups and other organizations add to the misinformation by promoting unproven

treatments and unreliable diagnostic methods.

Writing in The Pediatric Infectious Disease Journal, two infectious disease experts at the

University of Connecticut reviewed the quality of online information about Lyme disease. Most

of the sites they surveyed contained inaccurate or incomplete information. One of the authors,

Henry Feder, told Reuters Health, “The problem is that some of these sites may have had an

agenda other than education. They make the unusual seem common.” As the authors noted in

their paper, “The challenge for medical providers is to convince worried patients…that some of

the Internet-recommended testing and treatment…is inappropriate. This convincing can take

multiple visits, debate, compromise and time.”

That level of misinformation also prompted Kent Sepkowitz, director of infection control

at Sloan-Kettering, to vent similar feelings in the New York Times. He wrote: “The vast, lumpy

terrain of Lyme disease is a confusing place for doctor and patient alike. According to some,

Lyme is able to cause any imaginable symptom, yet laboratory diagnosis remains famously

elusive. This combination of plasticity and stealth makes it a convenient explanation for any

ailment that otherwise makes no sense.”

Diagnosis is fertile ground for online misinformation and deceptive marketing. So much

so that in February, the CDC published a warning about Lyme disease testing. They cited three

types of Lyme tests whose accuracy and clinical usefulness could not be determined. The CDC

said patients should be “encouraged to ask their physicians whether their testing…was performed

using validated methods and whether results were interpreted using appropriate guidelines.”

Guidelines are navigation aids for both physicians and patients. But if someone doesn’t

like the guidelines, there’s nothing to stop them from making up their own. That’s what one

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group of private practice physicians did. They posted a set of Lyme treatment guidelines on a

website, and then proceeded to follow the guidelines they had written for themselves.

Other organizations and advocates have been even more creative in trying to redefine

Lyme disease and its treatment. They are seeking to change state laws under which physicians

and insurers operate. In March, for example, the Maryland legislature considered a bill

supporting the long-term treatment of so-called chronic Lyme disease. It was struck down in the

Senate. Afterward, Sen. Roy Dyson (R-St. Mary’s) said, “We’re not in the business of directing

protocol[s] for doctors.”

So the battle for accurate, honest information continues online, in the legislatures and in

the clinics. It is an information war and right now it’s hard to tell who is winning. One clue is

offered by a woman in an Internet chat group who wrote, “I am convinced I have Lyme Disease.

I am seriously considering treating myself. Am going to order meds from an offshore

pharmacy.”

You can help protect yourself from online misinformation by reading, “10 Things to

Know about Evaluating Medical Resources on the Web,” at

www.nccam.nih.gov/health/webresources. For reliable information about Lyme disease and

ticks, see: www.nlm.nih.gov/medlineplus/lymedisease.html.