Lyme Hearing Highlights a Broken System

Everything we think we know about Lyme needs to be rewritten, one doctor says.

July 30, 2009

Bad sign: Disagreements about how to handle Lyme disease put patients' health at risk.

RODALE NEWS, EMMAUS, PA— Borrelia burgdorferi is a sneak. And a smart one at that. Also known as Bb, it’s the organism that’s carried by certain ticks and causes Lyme disease, an infection that affects an estimated 200,000 people a year in the United States. Depending who you talk to, the Lyme bacterium causes a short-term infection that can be cured with a month’s worth of antibiotics or—as a growing number researchers, doctors, and patients say—it’s a serious pathogen that invades different organs, hides from detection by lab tests, and causes chronic pain and symptoms that lasts for months or years. Controversy over guidelines governing how doctors diagnose and treat the disease has been brewing for years, but yesterday the arguments were aired in public as 18 doctors, scientists, and patients testified at a hearing before a new Infectious Disease Society of America (IDSA) Lyme disease review panel in Washington, DC.


THE DETAILS: The hearing was a result of an antitrust settlement brought by the Connecticut attorney general to address alleged flaws (including financial conflicts of interest) regarding IDSA’s 2006 Lyme disease guidelines, which are recommended by the U.S. Centers for Disease Control. The nine-hour hearing featured prominent physicians who stand by the IDSA guidelines, those who treat more aggressively and prescribe longer and stronger doses of antibiotics (as recommended by the International Lyme and Associated Diseases Society, ILADS), and independent Lyme disease researchers.

Here are some of the highlights from the hearing:

•Current guidelines suggest prescribing an immediate single dose of doxycycline if a person finds an attached tick on his or her body; however, one researcher pointed out, that dose won’t effectively block out infection, and it could lead to false-negative blood tests for Lyme. In other words, the practice could keep people who have the infection from being diagnosed correctly and given treatment.

•The blood tests of people who are chronically ill with Lyme disease could also come back negative because of past use of the antibiotic azithromycin. This is problematic because current guidelines rely on those blood tests to confirm Lyme if an infected person doesn’t develop the telltale bull’s-eye rash (which, by the way, fewer than half of Lyme patients get).

•Some Lyme patients report pain levels similar to that of people suffering from congestive heart failure or osteoarthritis.

•There are more than 100 different strains of the bacteria that causes Lyme disease, which could explain why some people with Lyme actually test negative on screening tests, or respond differently to treatment.

•Eugene Shapiro, MD, of IDSA and Yale University School of Medicine in Connecticut, reiterated IDSA’s viewpoint that people who remain sick after being treated with the standard month of antibiotics are not suffering from Lyme, but MUS—“medically unexplained symptoms.”

•Perhaps one of the most convincing presentations came from Allison Delong, MS, biostatistician for the Center for Statistical Sciences Program for Public Health at Brown University in Rhode Island. Delong explained major flaws in two studies heavily credited in creating the IDSA guidelines, and ones that are often used to discredit long-term antibiotic therapy. “She has the ability to lay out the math, and call out other studies as flawed and overrated,” says Daniel Cameron, MD, president of ILADS.

The new IDSA panel will take points from Thursday’s hearing into consideration, revisit peer-reviewed studies, and complete a report regarding guideline revisions by the end of the year.

WHAT IT MEANS:The problem that critics have with the current Lyme guidelines is that they are extremely restrictive, and consequently the testing leaves out many Lyme patients who don’t test positive. Doctors and specialists all across the country adhere to the guidelines; if they don’t, in all but three states (Rhode Island, New York, and Connecticut), they risk losing their licenses. But as the testimonies were laid out by people on different sides of the issue Thursday, it became apparent that the current two-tiered testing system, relying on ELISA and Western Blot blood tests, are not nearly accurate enough. In fact, one presenter, Steven Phillips, MD, former president of ILADS, says current screening tests have a sensitivity between 45 to 55 percent. That leaves out a lot of people who are having trouble receiving treatment because they don’t test positive. And health insurance companies don’t have to pay for treatment if a patient doesn’t test positive. “Commercial testing for Lyme disease is broken. It needs to be fixed. This panel needs to at least recognize that and revise the guidelines,” says Dr. Phillips.

Lyme disease is complex, but here are some basics to be ware of:

We don’t know it all. One of the memorable moments of the long hearing occurred when Ken Liegner, MD, a member of ILADS, said quite plainly, “A general reassessment of everything that is believed to be true about Lyme disease is necessary.” He added, “We have to come to terms. This is a formidable pathogen, there’s a still a lot we don’t understand.” Resolving many of the issues will require more scientific research and less rancor between camps. As science writer Pam Weintraub points out in her award-winning book Cure Unknown: Inside the Lyme Epidemic, the fight over Lyme has become politicized and ugly. “What we really need is more research. If independent people can make this clear, whether the guidelines are changed or not, maybe that’s progress.”

Antibiotics are an important option. One of the biggest controversies in Lyme treatment is the use of antibiotics, particularly long-term use. While this type of treatment can sometimes pose serious side effects, studies have also shown it helps those suffering from chronic Lyme, especially in the fatigue department. If you’re diagnosed with Lyme disease and still don’t feel better after initial treatment, consider seeking a second opinion from a doctor willing to treat Lyme more aggressively. As one presenter put it on Thursday, long-term antibiotic use may not be the answer, but it’s the best thing we’ve got right now.

Prevention is paramount. Of course, the best tactic is to avoid the disease. That may become harder and harder to do as tick populations explode, thanks to warmer winters, large deer populations, and fragmented forests. When you’re outside in wooded areas, wear a hat and light-colored clothing, and tuck your pants into your socks. When you get back, do a vigorous tick check, paying extra attention to darker, moist areas like your groin and armpits, and under your bra line. If you find a tick that’s attached, or even engorged, remove it by using tweezers to pull it off (grasp close to the skin, pull slowly and firmly, don’t twist). Toss the tick in some alcohol and take it with you to your doctor’s office. If you ever find a bull’s-eye-shaped rash, you have Lyme. Go to the doctor right away for treatment. When the disease is caught early, it’s more treatable.

Get tested twice. If you think, or know, you were recently bitten by a tick, and your first ELISA test comes back negative, schedule another one for a few weeks later. Barbara Johnson, PhD, of the CDC, said at the hearing that it is sometimes necessary to take a second sample a few weeks after the first to get an accurate reading.

Know where to turn. If you are diagnosed with Lyme, or suspect you have it (and have ruled other health ailments out), join a Lyme support group to find doctors and tips on dealing with the disease—and how to beat it! Start with