There is a subculture in America you may know little about. Its members are haunted by a slender, twisting, tick-borne germ known as Borrelia burgdorferi, the microbe responsible for Lyme disease, and they are trying desperately to warn us that we are all at risk of contracting a debilitating, chronic illness characterized by joint pain, fatigue, mood disorders and a long list of other symptoms.
Arrayed against these true believers are most of the mainstream scientists who study B. burgdorferi. Although they acknowledge that Lyme disease is a genuine illness that humans can get from being bitten by infected ticks, and that those who are not treated promptly can develop worse symptoms, they don’t believe that infection leads to a chronic condition. The thousands of people who attribute their symptoms to “chronic Lyme disease” are simply misguided, many researchers believe.
As the website of the National Institute of Allergy and Infectious Diseases puts it, “While the term is sometimes used to describe illness in patients with Lyme disease, in many occasions it has been used to describe symptoms in people who have no evidence of a current or past infection.”
Finding common ground between the two camps is difficult. But a few weeks ago, the groups trying to warn about Lyme disease claimed a victory when the Centers for Disease Control and Prevention announced that it had underestimated Lyme’s prevalence in the United States by a factor of 10. Instead of an estimated 30,000 cases, the CDC now estimates 300,000 cases a year.
But the agency didn’t budge on another area of raging dispute: where the disease occurs. As the CDC’s website puts it, “This disease does not occur nationwide and is concentrated heavily in the Northeast and upper Midwest.
The South, where I live, is one of the areas where researchers insist Lyme disease does not occur. I have no interest in entering the intensely emotional debate about whether “chronic Lyme” exists. But, for a magazine article I recently wrote, I spent a good deal of time trying to answer a single question: Does Lyme disease, or another, similar Borreliosis, exist in the South?
When it comes to the enigma of Southern Lyme, the two camps might as well be on different planets. The president of the volunteer association GALDA (Georgia Lyme Disease Assn.), Liz Schmitz, insists there are thousands of Lyme cases in Georgia and the rest of the Southeast. Gary Wormser, a well-established Lyme physician and researcher at New York Medical College, dismisses that idea. “If there’s an established case in Georgia, it will be the first case,” he told me.
Those in the medical establishment tend to agree with Wormser, based largely on evidence that the blacklegged nymphal ticks that spread disease in the Northeast don’t seem to bite people in the South, probably because they hide from Southern summer heat deep in leaf litter. Jean Tsao of Michigan State University, who’s heading a $2.5-million study to identify why rates of Lyme disease are so much lower in the South, has concluded that people are no more likely to contract Lyme there than to be struck by lightning.
Ask Schmitz about that and she explodes, citing names, patients, numbers, cases, frequently bursting into tears as she tells you how the disease is “destroying our children.” Schmitz doesn’t understand why the CDC and others keep denying the presence of Lyme disease in the South.
Who’s right? The truth, as so often is the case, isn’t simple. Many researchers have concluded that the risk of Lyme disease in the South is virtually nil because there aren’t any infected blacklegged nymphal ticks biting people. But it turns out there are other potentially problematic Southern ticks, including lone star ticks, whose bite may produce a red rash that looks very like the Lyme rash of the North.
Kerry Clark, a tick and Borrelia expert at the University of North Florida, believes that the much hardier lone stars spread a Lyme-like illness in the South, and he’s confirmed the presence of the same Lyme Borrelia DNA in two cases from human patients and the lone star ticks that bit them. He’s also found the presence of Borrelia DNA in at least 100 other people from the Southern United States.
Other researchers will, most likely, dispute his conclusions, pointing to experiments showing that the Borrelia microbe that causes Lyme is killed by the saliva of lone star ticks. Clark counters that not all the germs died in those experiments, and he also points out that the experimenters used Borrelia originally taken from blacklegged ticks and not from lone stars, where the hosts — and the evolutionary pressures — would have been very different.
So is there Lyme disease or something closely related in the South? There are certainly different Borrelia strains circulating in nature in the Southern United States, and Clark’s work suggests that some of those strains are making people sick.
But the problem won’t be fully resolved until the two sides can stop talking past each other. Each feels the other is simply refusing to hear what it says, and that its biases inform its conclusions. Clark, and a few other scientists, including James H. Oliver of Georgia Southern University, are trying to move past that stalemate, keeping focused on their research and not on the whirling poles spinning about them. In the end, that kind of approach is the only way we’ll ever learn the truth of Lyme — in the South and everywhere else.
Wendy Orent is the author of “Plague: The Mysterious Past and Terrifying Future of the World’s Most Dangerous Disease” and the new ebook, “Ticked: The Battle Over Lyme Disease in the South.” Twitter: @wendyorent