Lyme Disease Wars
Rockville physician Daniel Jaller believes the disease can be chronic
After his last patient of the day leaves his office at Shady Grove Plaza in Rockville, Jaller remains at his desk as the May sky darkens. He’s tall and thin with dark hair showing flecks of gray, narrow eyes behind dark-framed glasses, and long fingers he often presses together when he talks. He has a professorial tone, and his conversational style invokes references that range from popular movies to quantum physics.
Behind him are framed diplomas from the Ross University School of Medicine on the Caribbean island of Dominica; Temple University in Philadelphia, where he did his residency; and D.C. General Hospital, where he interned. A bookshelf is lined with medical reference books, including one that’s titled Healing Lyme. An open bag of pretzels is propped on a stethoscope beside a bottle of Dr Pepper on his desk. There’s an examination table on the other side of the room.
Stacked on the floor and on chairs around his desk are a half-dozen patient charts—some holding nearly a decade of paperwork—that he’s preparing to send to the Maryland Board of Physicians for review. For the third time in seven years, Jaller has recently been investigated by the board for his unorthodox treatment of patients with chronic Lyme disease. This is the first time he’s been disciplined. As part of a year-long probation, he was required to send patient charts regularly. His only crime, he says, is tilting against the medical establishment.
Along with the records, Jaller is sending a two-page letter insisting he is the casualty of what he calls a “paradigm war.” When he read it to his wife the previous night, she told him not to send it, he says. He holds the letter in his hand as if he’s still trying to decide.
“Lyme disease has been and remains perhaps the most controversial disease of the past 30 years,” the letter reads. “There are two divergent paradigms with attendant approaches and guidelines that are diametrically opposed. A paradigm has long been waged which has been about politics as much as it has been about science and ideas.”
“Paradigm” is a word Jaller uses a lot. He calls his practice Paradigm Medicine, and he sees himself as part of a new way to think about Lyme disease, one that’s based on doctors treating patients and seeing what works, rather than relying on academics to craft studies that he says are often flawed. He blogs about his work on a site he calls “LymeMD.”
His blog entries—sometimes scientific, sometimes philosophical—often challenge the medical establishment. A few posts describe unusual patients he’s seen whose symptoms were long overlooked or misdiagnosed. In one, he speculates about what he believes are newfound variants of Lyme disease. In another, he challenges the accuracy of the testing. Too often patients have the disease, but their blood test results are negative or inconclusive, he writes.
“The disease threatens the premises which hold together the gestalt understanding of human disease,” he writes in one post. “An acceptance of these mind bending notions would require serious revisions of uncountable chapters in medical textbooks. In a sense this may be what the paradigm war is about. It is not about whether Lyme persists or how long patients should be treated etc. It is about a fundamental rethinking of disease…” The entry ends with a Bob Dylan verse. You’d better start swimming or you’ll sink like a stone for the times they are a-changing.
“Medicine has always been an art as much as a science,” says Jaller, who lives in Gaithersburg and has six children, including three stepchildren. “I think it’s more art than science.”
Doctors who follow Jaller’s paradigm believe that in some people the Lyme bacteria never went away, and that long-term antibiotics are needed to get rid of the disease. It’s hard to say how many of these doctors are practicing—many don’t want to draw attention to their alternative approaches, Jaller says, so they don’t advertise. Patients find them by word of mouth. Even the ILADS website doesn’t list doctors’ names. The association asks patients seeking treatment for chronic Lyme disease to send an email, so the group can reply directly with a list of nearby physicians.
“I’m living proof that what he does can give you back your life,” says Katie Sherman, 37. The Silver Spring mom blames an accumulation of Lyme disease infections—she’s had several tick bites throughout her life—for the temporary paralysis of part of her face. She credits Jaller’s antibiotic treatments with bringing her back to normal. “I feel like if I didn’t go to him, it would have spread to every area of my body.”
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Dr. Daniel Jaller specializes in alternative methods of treating tick-borne illnesses, including chronic Lyme disease—a diagnosis that the mainstream medical community doesn't recognize. Photo by Erick Gibson.
Jaller started treating Lyme disease in 2005, when a patient diagnosed with meningitis came into his family medicine practice. “He looked like a zombie,” Jaller says. A nurse thought it might be Lyme disease, and suggested Jaller consult with a doctor who specialized in the illness. Jaller did, and after a round of intravenously administered antibiotics, the patient improved. Jaller was convinced that the man was suffering from untreated Lyme disease. The more he learned about other patients like him, the more intrigued he became.
“My attorney at the time said, ‘Whatever you do, don’t treat Lyme patients,’ ” Jaller says. Doctors who diagnose chronic Lyme often lose their licenses, his attorney warned, because their techniques aren’t recognized by the medical establishment.
Jaller ignored his attorney’s advice. He was convinced that many people who were suffering could be helped with alternative Lyme disease treatments that mainstream medicine was ignoring. “I found that I was at ground zero of a Lyme epidemic,” Jaller says, “that I had so many patients with Lyme. …I felt like in good conscience I couldn’t continue to do the work I was doing. I couldn’t be a primary care doctor and not treat Lyme. I didn’t really feel like I had a choice. Either I treat Lyme or I go do something else.”
He soon became known as a doctor who treated chronic Lyme disease, and that came at a cost. Jaller fought off two investigations by the state board, and although the complainants were anonymous, he says both were brought on by a doctor who doesn’t view chronic Lyme as a legitimate diagnosis. By 2013, when Jaller’s practice focused solely on Lyme disease, he faced a third investigation, this one sparked by a complaint from an insurance company. That investigation led to his recent probation.
When the Maryland Board of Physicians reviewed cases referenced by the insurance company, it found that Jaller had diagnosed a patient as having had Lyme disease and other tick-borne infections even though the person had tested negative for them, and that Jaller prescribed IV antibiotics that led to an esophagus infection—a common complication of long-term antibiotics—and blood clots at the site of the catheter, a risk of IV use. In another case, Jaller had treated a patient for more than three years even though the man’s Lyme disease tests were inconclusive and the treatment “failed to yield clear benefit,” the board concluded, according to its report.
Jaller reached a settlement with the board, which included his probation. In the consent order that both sides agreed to, the board criticized his approach to prescribing antibiotics and his refusal to consider diagnoses other than Lyme disease, saying he “failed to meet the standard of quality care.” But those sharp criticisms, which Jaller says were the work of a peer review physician he calls a “professional Lyme denialist,” appeared only in the “findings of fact” section of the order and carried no penalty.
The order’s “conclusion of law” was just one paragraph. It took Jaller to task for not being clear enough in his paperwork, not directing patients to specialists when necessary, and failing to watch for IV side effects.
“A war over ideology was replaced by a reprimand of an administrative nature,” Jaller declared on his blog. Calling the settlement “an astounding victory,” he told his supporters, “I was granted full license to continue practicing in exactly the same way I have for years without any restrictions.”
Jaller insists that while his treatments don’t follow mainstream guidelines recognized by the Infectious Diseases Society of America, they do follow a standard of care created by the ILADS, which urges doctors to treat patients based on what they see, not just on what the tests show.
“Two parallel universes have evolved regarding Lyme disease,” Jaller says. “One is the product of academia. One is the result of doctors in the trenches.”
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If Jaller represents one universe, Dr. Paul Auwaerter represents the other. The clinical director of the Division of Infectious Diseases at the Johns Hopkins University School of Medicine, Auwaerter is an outspoken critic of the notion of chronic Lyme disease, and the “professional Lyme denialist” Jaller refers to. In a 2011 opinion published in the British medical journal The Lancet, Auwaerter said chronic Lyme disease advocates “pose a threat to public health.” He likened them to “anti-science groups” that oppose vaccines and question the cause of AIDS.
“When I see patients from [Jaller’s] practice and others like him, more often than not they have no sound basis for Lyme disease,” Auwaerter says.
The week before he spoke with Bethesda Magazine, Auwaerter treated a patient who had been diagnosed with chronic Lyme disease by another doctor because of the tremors he was experiencing. After a year and a half of antibiotics, the tremors never went away. But Lyme disease isn’t known to cause tremors, Auwaerter says. Instead, according to Auwaerter, the man had Parkinson’s disease, and after treating him with an appropriate medication, the tremors eased. Auwaerter says he’s seen patients with multiple sclerosis, Alzheimer’s disease and sleep apnea who weren’t getting the proper treatment because they were told they had chronic Lyme.
“Chronic Lyme disease, I think, is a wastebasket term that’s employed by many of these doctors that are using some of these alternative therapies,” Auwaerter says.
Unlike patients with clear-cut PTLDS, many of these people never had Lyme disease, Auwaerter says. But even for those who have PTLDS, science is at a loss for how to treat it. No clinical trial has shown evidence that long-term antibiotics help. A study published in The New England Journal of Medicine this past March tested 281 subjects and found that those who were given long-term antibiotics did no better than those who received a placebo. A 2008 National Institutes of Health study found that PTLDS patients with memory problems who took 10 weeks of IV antibiotics improved at first, but the effects didn’t last.
Chronic Lyme disease advocates say these trials haven’t gone on long enough and may not be using the right antibiotics. But if that’s the case, researchers say, Lyme disease doesn’t act like most other illnesses. “Any other infectious disease, if you treated someone with four weeks of IV antibiotics, you’d see a pretty miraculous recovery in a huge percentage of patients,” says Dr. John Aucott, director of the Johns Hopkins Lyme Disease Clinical Research Center.
Aucott is finding some middle ground in the rift over how to treat persistent Lyme disease symptoms. He’s the only doctor at the center, which occupies a suite of rooms in a brick office complex above a shopping center in Lutherville, Maryland, about 10 miles north of Baltimore. It’s surrounded by tick country: tracts of forest, open fields and winding suburban roads with names such as Fox Hunt Lane and Tally Ho Road.
Aucott’s center hasn’t taken a position on what causes some Lyme disease patients to continue to suffer—or how to treat them. “We’re agnostic,” he says with a smile.
Maybe someday a study will show that long-term antibiotics really do alleviate persistent Lyme symptoms, he says. Or maybe they help because they reduce swelling, not because they kill bacteria.
Like Auwaerter, Aucott says he’s seen a number of patients wrongly diagnosed with chronic Lyme disease when they actually had other conditions, everything from adrenal disorders to HIV. But he has also seen patients who seem to be legitimately suffering from long-term Lyme disease symptoms, some of whom have been turned away by doctors who are afraid to wade into the controversy. While science struggles to understand how to treat these patients, he says, Lyme disease doctors are working in the dark.
“I think the majority of them are trying to do their best by their patients with limited knowledge or tools,” Aucott says. “Of course, in any field there are charlatans out there abusing the system, but my response is: The system is not doing a good job serving these patients.”
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In the meantime, many patients turn to doctors like Jaller for answers, and some insist they’ve found them. “I was going to end up in a nursing home, unable to speak or move,” says Sarah Ward, 58, who was treated by Jaller before moving to Georgia earlier this year. Ward started suffering from fatigue in 1995 after getting Lyme disease following a tick bite. Sometimes she had to crawl from room to room. After trying several doctors and techniques, she found Jaller in 2011, and he diagnosed her with chronic Lyme disease. She spent two years undergoing intravenous antibiotic therapy, and still uses hyperbaric oxygen and other treatments. Progress has been slow, but she thinks she’s ready to ride her horse again for the first time in two years.
“I have all kinds of plans and things I want to do,” she says. “I am so much better than I was before, and I’m getting better all the time, but it’s going to be a longer and thornier road than I thought.”
After a few months of seeing Jaller, Melissa Brinsfield says, she started feeling more like herself. The brain fog lifted. The sweats improved. The symptoms haven’t gone away completely, but they’ve eased. She’s cooking dinner again. She has more good days than she used to, and the bad days aren’t so bad. “Lyme is still a very big part of my life, but it doesn’t run it anymore,” she says. “And it did for a long time.”