These days it’s no shock to learn that officials may not always give us the most up-to-date information on a fairly new disease that poses a grave threat to the public. The surprise is that it doesn’t involve COVID-19.

Since 2016, a nonstop avalanche of new findings on Lyme has crushed a lot of long-held beliefs about this disease. It is regularly misdiagnosed, harder to treat than one might assume, and can debilitate a person for months or years. In a few instances, its effects last a lifetime. Lyme is a huge – perhaps the biggest – health risk to farmers, forestry workers and others whose jobs are principally outdoors.

In this first of a three-part series, I hope to correct some misunderstandings about Lyme disease and explore why it’s so hard to diagnose. Subsequently, I’ll present new ways to protect ourselves and our families, consistent with the latest research. And since I have the dubious “advantage” of first-hand experience, I’ll describe the heavy toll Lyme took on my family, in hopes the same doesn’t happen to yours.

As you likely know, Lyme disease is caused by a spirochete bacterium, Borrelia burgdorferi, which is transmitted by the oh-so-appetizing blacklegged or deer tick, Ixodes scapularis. I won’t go into tick ID, as there are myriad online resources, including links provided at the end. The focus here is on what happens when a decidedly mobile pathogen with a craving for hearts, brains, and joints starts to drill into our soft tissues.

As these mini-corkscrews auger around our innards, the resulting symptoms range widely from person to person. They are usually transient or periodic as well, making diagnosis all the more difficult. Early indicators of Lyme vary so much that “typical” symptoms may not exist. Sure, it can present as a fever and joint aches, but the first clue something is wrong might be heart palpitations or profound mental confusion, things once considered late-stage Lyme symptoms.

While an expanding bull’s-eye rash (erythema migrans) was once broadly touted as “the most commonly reported sign” of Lyme, this “truth” has been revised downward. Cornell University Extension says “Clinical and population-based estimates give a lower rate, ranging from 27% to 40% of individuals who are infected with Lyme exhibiting the rash.” And according to Dr. Nevena Zubcevik, co-director of The Dean Center for Tick-Borne Illness in Charlestown, RI, the incidence of erythema migrans in confirmed Lyme cases is around 20%.

A significant number of Lyme cases are mistaken for multiple sclerosis, fibromyalgia, lupus, chronic fatigue, and psychiatric illnesses, among other disorders. Increasingly, it is misidentified as sudden-onset dementia. And all too often in regions where Lyme is beginning to establish, doctors tell a patient “It’s all in your head” because they expect a bull’s-eye rash. Tragically, children under five are the age group most likely to go undiagnosed for long periods.

Blood tests, which are tailored to a 40-year-old strain of the Lyme pathogen, get a failing grade. The Canadian Medical Association recognizes at least ten “phenotypically and genotypically distinct” strains of Borrelia burgdorferi. Many of these are not detected easily, if at all, by lab assays.

The Western blot test is not administered consistently from one lab to another. Plus, the results are subjective and open to interpretation – it’s far from a “yes-no” situation. And two recently discovered species of Borrelia cause Lyme too, and neither shows up in blood work. It is an uphill battle to get doctors to begin diagnosing this disease based on clinical presentation, not blood tests.

If Lyme is detected early, most people recover with a three-week antibiotic course. But not always. In a 2018 paper, the National Institutes for Health stated “Several recent studies suggest that B. burgdorferi may persist in animals after antibiotic therapy.” A great deal of controversy surrounds the question of why symptoms last for months or years after an infection. I won’t wade into that morass, other than to say that everything we know about the issue wouldn’t fill a thimble.

The next segment will delve into practical and highly effective ways to avoid ticks, and what NOT to do when they are encountered.   

https://web.uri.edu/tickencounter/species/blacklegged-tick/

https://nysipm.cornell.edu/whats-bugging-you/ticks/what-do-ticks-look/

Paul Hetzler is a former natural-resources educator for Cornell Cooperative Extension.