After a hike in the park, you find a deer tick embedded in your skin. After queasily removing it with tweezers with mild concern, you check your child and are more concerned to find a tick on her, too. What do you do after you remove the tick?
If you’ve been paying attention, Lyme disease has reached epidemic levels, with upwards of 300 thousand new infections in the United States each year, according to the U.S. Centers for Disease Control and Prevention (CDC). The CDC recommends seeing a doctor “if you develop a rash or fever within several weeks of removing a tick.” Most doctors abide by CDC recommendations, considering the federal center to be the authority on responsible medical practice. What most people who aren’t familiar with Lyme disease don’t know is that the CDC recommendation isn’t as cut and dry and you might assume.
Lyme and associated diseases aren’t very well understood by science yet, and as we’ve seen in a number of articles and even among high-profile celebrities such as Avril Lavigne and Yolanda Foster, the disease is often misdiagnosed or missed entirely for months or years, and after a litany of diagnostic tests often show no abnormalities, many physicians suggest that their patients are either pretending to be ill or, more commonly, suffering physical effects rooted in depression, anxiety, or another mental illness. (Note that Lyme can infect the brain and cause inflammation, resulting in a number of neuropsychiatric symptoms ranging from depression and anxiety to psychotic episodes–but when treated, these symptoms often resolve fully.)
Because of the prevalence of Lyme, some doctors, such as Dr. Steven E. Phillips, a former president of the International Lyme and Associated Disease Society, recommend treating patients who’ve been bitten by tick with doxycycline, within hours of having been bitten rather than waiting for symptoms to appear.
If you want to know whether you may have been exposed to the bacterium that causes Lyme disease, Borrelia burgdorferi, you can save the tick and send it to the Bay Area Lyme Foundation for free testing; or, for $50, you can send the tick off to the University of Massachusetts at Amherst’s Tick-Borne Disease Network to find out whether the tick carries B. burgdorferi or any of many common Lyme coinfections, including Babesia sp.–a malaria-like infection that’s increasingly common in the United States–Bartonella henslea, which causes “cat-scratch disease” with telltale skin lesions and can progress to severe neurological infection, and various others.
In almost all cases, those who are tested for Lyme disease will be tested with the CDC-endorsed two-tier testing process recommended by the Infectious Diseases Society of America (IDSA)–an enzyme immunoassay blood test, which, only if positive, will be followed by an immunoblot test (the Western blot). However, although this is the standard diagnostic process, it is highly controversial, as various studies have shown that the sensitivity of these tests ranges from 18 to 67 percent — meaning that it misses many, if not the majority, of Lyme disease infections. As a result, in 2013, Virginia passed a law requiring physicians to disclose to patients who are tested for Lyme the high probability of false negative results. And last month, the outdated and allegedly biased IDSA Lyme disease treatment guidelines that have for years restricted treatment of Lyme patients have been removed from the website of the National Guideline Clearinghouse (NGC) pending review and updating.
More accurate Lyme disease tests are being developed, but in most cases are not made available to patients except by “Lyme-literate” medical doctors, or LLMDs, who are in high demand and are not available to all patients, as most reside in areas where Lyme disease has reached true epidemic proportions, from Virginia to the Northeast.
In a separate article, I will discuss the two-tiered Lyme testing process with a number of researchers and other experts, including the specific challenges with diagnosing Lyme and associated diseases, what changes need to take place in the testing process, what patients should do now, and how long it could be before a truly accurate and reliable Lyme disease test will be available.