The modern history of Lyme disease starts with an outbreak in the early 1970s in Lyme, Connecticut of a mysterious illness that afflicted children and adults with swollen knees, rashes, headaches and severe fatigue.The cause wasn’t discovered until 1981, when a scientist who had been studying ticks, Willy Burgdorfer, found the link to a bacterium ticks carried. The bacterium got named Borrelia burgdorferi, and further research found that patients — at least some of them — responded to treatment with antibiotics.
Since then, little progress has been made on Lyme disease. The two-tiered blood test for diagnosing the disease is unreliable. The treatment — a short course of an antibiotic such as doxycycline — leaves a significant percentage of patients with lingering, debilitating symptoms.
Depending on when antibiotics are administered, symptoms persist in anywhere from 5 to 40 percent of patients. Since more than 300,000 people are infected each year in the U.S., if symptoms persist in just 10 percent of them, that’s 30,000 people — almost equal to the number of new AIDS cases each year.
“Those patients don’t get better,” said Dr. John Aucott.
Aucott has been working on Lyme disease since the mid-1990s and is the director of the Lyme Disease Clinical Research Center at Johns Hopkins Medicine in Baltimore, Maryland. He is leading research aimed at developing a more accurate Lyme disease blood test and, eventually, understanding how and why the disease progresses and persists.
Sickness could persist in some patients because B. burgdorferi is hiding in the body, evading its immune response and also the action of antibiotics. Or the long-term symptoms could be caused not by the original infection but by the body’s immune response.
“Honestly, we don’t know that,” Aucott said.
Not knowing has led to caution in the mainstream medical community about treatment and even controversy over what to call the collection of symptoms — fatigue, pain, insomnia, depression and more — in patients already treated for the disease.
“Chronic Lyme” has become a polarizing phrase, rejected by mainstream organizations such as the Centers for Disease Control.
Aucott calls it post-treatment Lyme disease syndrome, while insisting it is a real ailment that has caused serious harm to the health of many thousands of Americans.
A caution about overtreatment is expressed on the Centers for Disease Control website, which warns that “long-term antibiotic or alternative treatments for Lyme disease have been associated with serious complications.”
But as years have passed without answers, people who are suffering point out they already have “serious complications.” With mainstream medicine offering them no solutions, they have looked elsewhere.
Anger and action
“People are just desperate,” said Christina Fisk, president of the Lyme Action Network, based in the Glens Falls area. “There are so many of them, it’s just shocking. They’re really just dismissed by the doctors. They’ve got a bacterial infection that’s being denied.”
Despite her frustration, Fisk wants to work with doctors, not against them.
“I really feel for the doctors. … They are seeing they really don’t have the answers they need,” she said.
In the mid-1990s, Aucott, an infectious disease specialist, found himself in the middle of an “expanding epidemic” of Lyme disease in Maryland. He was struck by the way symptoms persisted in some patients who had received treatment, and by his inability to help them.
“No one could answer for me why my patients weren’t getting better,” he said.
Finding that answer has been made more challenging by the lack of government funding for Lyme disease research.
Lyme “doesn’t have that wow shock factor,” and so has difficulty attracting grants from the National Institutes of Health, Aucott said.
“Funding is really quite small,” he said. “When you look at the numbers, it doesn’t make any sense at all.”
Lyme disease has debilitated tens of thousands of people, compromising their health and curtailing their lives in significant ways. But it doesn’t kill many people.
“It’s not like AIDS or ebola,” he said.
Lyme patients don’t necessarily even look ill. Common symptoms, such as fatigue and pain, are not always obvious to an observer.
“It’s not Zika,” Aucott said.
The shocking photos of babies with microcephaly caused by the Zika virus helped to mobilize a strong government response, including millions of dollars in research funding.
The struggle over defining the long-term effects of Lyme disease has also blocked medical progress in fighting it, Aucott said.
“The name becomes a big obstacle to a rational discussion,” he said, referring to the battle over the term “chronic Lyme.”
“That’s really been a huge impediment,” he said.
But help from private donors, including one very generous donor, has made it possible for Aucott and several other researchers to pursue Lyme research at Johns Hopkins.
He is working with patients with long-term symptoms, looking for “biomarkers” — measurable physical indications of the disease.
It’s not enough for patients to report feeling better (or worse), Aucott said. Researchers need a way to measure the changes.
“You can’t do treatment trials without biomarkers,” he said.
Meanwhile, doctors on the front lines still have little to offer patients whose suffering continues, except a warning about overuse of antibiotics.
“When folks have symptoms that go on and on, it’s really hard to say, what’s that from? This is a place where we don’t have a clean answer,” said John Sawyer, chief medical officer for Hudson Headwaters Health Network.
“Is it absolutely ridiculous to go and do what folks are doing? No, it’s not ridiculous. It might not be very helpful,” he said, in reference to treating Lyme with a months-long course of antibiotics.
But, he said, “You can make people sick with long-term antibiotics. I wouldn’t do it. Unless there’s a proven benefit, I won’t do it.”
Some long-term Lyme disease sufferers have found relief through lifestyle changes — eating in a healthy way, getting sleep, reducing stress. Sawyer endorsed this.
“That would help anybody with anything,” he said.
Aucott would not wade into the fight over long-term antibiotic treatment.
“I do have a feeling about it. It’s very controversial. I’m not going to answer beyond that,” he said.
The central problem, people on various sides of the Lyme disease debate agree, is that very little progress has been made in understanding and treating the disease over the past three decades.
“It’s an unmitigated health disaster,” said Holly Ahern, a microbiology professor at SUNY Adirondack and a driving force in the Lyme Action Network. “What we need are clinical trials.”
Politicians have responded to the spread of Lyme and advocacy of patients. Local Congresswoman Elise Stefanik recently co-sponsored a bill to increase federal attention to tick-borne diseases. Gov. Andrew Cuomo is pushing tick control methods and Lyme disease research in New York. Ahern is part of a federal working group that has drawn experts from around the country to re-examine various aspects of Lyme disease.
Those like Aucott and Ahern who have been engaged for decades now in the fight against the disease know the real enemy is a bacterium that lives inside ticks, and the challenge isn’t what to call the disease but how to cure it.