Summer’s in full swing, and while Zika’s splashed across headlines everywhere, Lyme disease is still the bigger bugger, infecting an estimated 300,000 to 1 million Americans each year. Lyme is spread by the bite of a tick—usually a nymph tick, poppy-seed-size and hungry during the spring and summer months. You already know the symptoms: a bull’s-eye-shaped rash, a stiff neck, headache, chills, and fever. More severe symptoms include nerve damage, memory issues, and arthritis.
But what you might not know is that because many people don’t display obvious symptoms or live in areas believed to be Lyme hot zones (that would be the Northeast and Upper Midwest), Lyme is easy to overlook—or misdiagnose. Even people who get treatment might not experience relief. And for those who are misdiagnosed or for whom antibiotics fail, the road to recovery can be long, expensive, and completely outside the scope of mainstream medicine.
Today, there’s a war raging between establishment medicine and alt practitioners and patients. Here's a look at the current state of the Lyme disease battleground—and how the field may slowly, mercifully be shifting for patients whose lives were forever changed by a bug bite.
1. We don’t actually know how to prevent it.
“We tell people to wear repellents, to do tick checks, and to shower if they've been in the field,” Ben Beard of the CDC’s bacterial-diseases branch told the journal Nature. “But there's very little data to show that these things reduce human illness.” Quickly noticing and removing a tick may help prevent infection, too; some experts say that the tick must be attached for at least 24 hours to transmit the disease, but—like so many things in the Lyme landscape—there’s no consensus on the exact time frame. The official message is: Don’t get bit.
And once Lyme has entered the bloodstream, in theory, it could be transmitted sexually or from mother to fetus in utero. Historically, experts have downplayed and denied these possibilities, though a study published in 1990 concluded that Lyme bacteria “may survive” in blood banks and that “transfusion-related Lyme disease is theoretically possible.” A 2011 report by Wired uncovered government documentation of babesiosis (another tick-borne disease) infections brought on by blood transfusions. Like babesiosis, Lyme lacks an approved blood test. It’s possible, though unproven, that Lyme could make its way into a new host without a walk in tick-infested woods.
2. We don’t really know how to diagnose it, either.
A Lyme diagnosis is often clinical, meaning your doctor asks if you’ve visited high-risk areas, looks for evidence of a rash, and weighs other symptoms. There’s also a two-tiered blood test that looks for indirect evidence: the presence of antibodies, not the Lyme bacteria itself. But there are obvious problems with this sort of testing. It takes time for people to begin producing antibodies, and antibodies also persist after infections. So not only could Lyme testing miss early infections, it could also diagnose patients whose Lyme has already cleared up.
Toss in that the test has a narrow window to work properly, and it’s no surprise that many people fall through the cracks. Just this spring, researchers at the Mayo Clinic revealed the discovery of a new strain of Lyme bacteria, Borrelia mayonii. Scientists acknowledged that traditional Lyme testing will most likely miss this strain.
“Right now, the tests are less than 50 percent reliable,” says Pat Smith, an activist and president of the National Lyme Disease Association. “We’re riding in a horse and buggy—that’s where we are in Lyme testing. The original criteria for that test were developed in 1994, and they’ve barely updated it.” Researchers have proposed new testing protocols over the years, she says, but to no avail: “We’re talking about nanotechnology now, sophisticated PCRs [polymerase chain reactions, a molecular disease-detection technique], different kinds of DNA tests, and yet the government and Infectious Diseases Society of America [IDSA] is not having it.”
3. Many doctors—and most insurance agencies—deny that chronic Lyme disease exists.
The existence of “chronic” Lyme, or Lyme that persists after a round of antibiotics, is one of the most hotly debated aspects of the disease today. After recommended treatment, about one in five patients still feels sick (like everything else involving Lyme, this percentage is disputed). Since these patients have already completed the recommended course of drugs, insurers can deny them additional treatment. The medical establishment can’t explain why not everyone feels cured. Still, some patients say pulsed courses or long-term antibiotic dosing is the only thing that makes them feel better.
The last time the IDSA issued Lyme guidelines was in 2006, with an update promised for this fall. When queried, an IDSA spokesperson directed me to the IDSA website and said, “new guidelines are still under development. Public comment has closed and they are reviewing the responses.”
4. The research tide may be changing.
Researchers are working to unravel the mystery of chronic Lyme, or as they call it, Post-Treatment Lyme Disease Syndrome [PLTDS]. Witness the Johns Hopkins Lyme Disease Research Center, which opened in April 2015. “Our primary focus is understanding the complexity of Lyme disease and the group of patients that doesn’t seem to get better after treatment,” says Dr. John Aucott, the center’s founder and director. He is working to identify a blood biomarker for patients with PTLDS as well as better diagnostic Lyme testing.
Over at the Lyme and Tick-borne Diseases Research Center at Columbia University, a team of researchers is working to identify the root causes of persistent symptoms. Director Dr. Brian Fallon cites persistent infection, an abnormally heightened immune response, and “neural activation on overdrive” as potentials.
Here’s what’s wild: We know that Lyme disease can linger in the body in strange new forms. Research on mice, dogs, monkeys, and, yes, humans demonstrates that these hardy bugs can hang around and even change shape under duress. According to a 2014 Hopkins study, doxycycline and amoxicillin kill the bacteria when active and replicating but have little effect against “persisters.” Hopkins researchers have just come out with a new test that rapidly screens thousands of FDA-approved drugs to see which work best on persistent Lyme bacteria. Using this technology, they have already discovered antibiotics that show promise in fighting lingering infections.
Given the challenges in preventing and treating Lyme, though, a vaccine may be the best hope for quashing the disease—but a human vaccine might be a ways off. Some scientists are developing a vaccine to hide in food left outside: a Trojan-horse approach to inoculating animal carriers, like mice. Then there are the research groups working on tick vaccines to make the insects stop feeding on humans and drop off, or to block transmission from the bug to its human host.
Dr. Richard Marconi, of Virginia Commonwealth University’s Department of Microbiology and Immunology, has been working on a vaccine for Lyme since 2006 and recently released a canine version called VANGUARD crLyme. “Lyme is not caused by a single type of bacteria—it’s multiple species,” he says. “There are not only diverse strains [of the bacteria] but also diverse species. An efficient vaccine has to protect about all the versions.” Using what he calls chimetrope technology, Marconi has fused pieces of the bacteria’s differing protein coatings together to form an entirely new protein to inoculate against many strains.
Until the official recommendations for Lyme disease diagnosis and treatment evolve, thousands of patients who don’t fit the CDC’s criteria for the illness are left out in the cold. Under intense scrutiny, doctors are less and less willing to go above and beyond these criteria. For now, hope lies in educating the public and physicians around the country. While the globe scrambles to deal with Zika, Lyme remains mired in a 40-year controversy. Unfortunately, it doesn’t seem like the two sides of the Lyme wars will reach a peace agreement anytime soon.