By Paul Hetzler
These days, it’s no shock to learn health officials may not always give us the most up-to-date information on a fairly new disease. The surprise is that it doesn’t involve COVID-19!
While Lyme disease is not yet rampant where I live in Québec, there is reason to believe that, over the next twenty years, this tick-borne illness will become a huge—perhaps the biggest—health risk to gardeners, foresters, and others who work outdoors in the province. 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.
No doubt it seems brash to assert that government websites are obsolete where Lyme disease is concerned, especially since I don’t have a string of letters after my name. But since 2016, a nonstop avalanche of new findings on tick-borne illnesses has crushed a lot of long-held beliefs. Given the speed of novel conclusions and the paucity of Lyme cases in Québec, a lag time is understandable. But it’s also not acceptable, as it puts us at greater risk.
I hope to correct some misunderstandings about Lyme disease here, and explore why it’s so hard to diagnose. In the near future, I’ll write about the latest and greatest ways to protect our families and ourselves, based on research. Since I have the dubious “advantage” of having my former home go from tick-free to highly infested in the space of two years, I’ll also describe in a subsequent post the heavy toll Lyme took on my family in hopes the same doesn’t happen to yours.
What Is Lyme Disease?
As you’ve likely heard, 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 cover tick ID, as there are many good online resources. (It appears in the article A Gardener’s Guide to Avoiding Ticks, among others.) The focus here is on what happens when a decidedly mobile pathogen with a craving for hearts, brains, and joints starts drilling 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 fever and joint aches, but the first clue something is wrong might be heart palpitations or profound mental confusion, things once considered late-stage symptoms.
While an expanding bull’s-eye rash (erythema migrans) is broadly touted here as “the most commonly reported sign” of Lyme, in areas where the disease has been established for decades, this supposed truth has been revised downward. Cornell University Extension, where I worked from 2000 until moving to Canada in 2019, 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, Rhode Island in the US, 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 dementia. 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. Children under five and people over 70 are the age groups which most frequently go undiagnosed for long periods.
Blood Tests: Not So Trustworthy!
Blood tests, which are tailored to an older strain of the Lyme pathogen, get a failing grade. There are at least ten distinct strains of Borrelia burgdorferi, many of which are not detected readily, if at all, by lab assays. The Western blot test is seldom administered uniformly from one lab to another. Plus, results are subjective and open to interpretation—it’s far from a “yes-no” situation. And two species of Borrelia recently discovered in North America cause Lyme too, and neither shows up in blood work. It has taken years for doctors in Lyme-prevalent areas to begin diagnosing based on clinical presentation, not blood tests, and it will be an uphill battle in areas now seeing an “uptick” in Lyme.
If Lyme is detected early, most people recover with a three-week antibiotics course. But not always. In a 2018 paper, the US 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 that is known about the issue wouldn’t fill a thimble.
Editor’s note: you can learn more about black-legged ticks in this blog article: A Gardener’s Guide to Avoiding Ticks.
Paul Hetzler is a former natural-resources educator for Cornell Extension in northern New York State.
© 2022 Paul J Hetzler