Photo by Erick Gibson
When Melissa Brinsfield wakes up, she never knows if it’s going to be a good day or a bad one. Will she be able to handle the press of people on the Metro to D.C.? Will she have the energy to make it through work? How severe will her headaches be?
“I’m turning 40, and at times I feel like an 80-year-old must feel,” says Brinsfield, gripping a water bottle she’ll fill over and over throughout the day to quench a thirst that, like the pain in her joints, never goes away. Still, she’s doing better than she was a few years ago. “I don’t feel as much of the rotting from the inside out anymore,” she says.
One morning in May, she walks to the conference room of the staffing firm where she works, her flip-flops slapping against her heels. Her bosses have been a blessing, she says. They don’t complain that she can’t wear regular shoes to work because her feet hurt too much. They’re flexible when she has to come in late, leave early or work from the Rockville office—closer to her home in Bethesda—instead of going downtown.
Brinsfield thinks back to the spring of 1998. She was an active, outgoing junior at Bucknell University in Lewisburg, Pennsylvania, pursuing a double major in education and English, when she looked down at her right forearm one day and saw a round red rash surrounded by a ring, like a bull’s-eye. Her doctor recognized it as the telltale sign of Lyme disease, a tick-borne illness that can cause aches, fevers and fatigue within days of being bitten. Left untreated, Lyme disease can affect the joints, nervous system and heart. For some patients, the symptoms can linger for years, even after they’re treated.
Brinsfield didn’t remember being bitten by a tick. Where could it have happened? When? She took a two- or three-week course of antibiotics, which is usually enough to leave patients feeling like themselves again, and she pretty much did for a while. But every year she’d have bouts of flu-like symptoms that wouldn’t go away for weeks. She suffered unexplained knee and back pain, which she chalked up to getting older.
In 2011, things got worse. She felt depressed and didn’t know why. She was experiencing aches and pains, confusion, and shortness of breath. She’d sweat in the cold and shiver in the heat. “To say it was hard to get out of bed in the morning is an understatement,” she says.
Two years ago, Brinsfield went to see Dr. Daniel Jaller, who diagnosed her with chronic Lyme disease. Jaller, whose office is in Rockville, specializes in alternative methods of treating Lyme disease and other tick-borne illnesses. But the Centers for Disease Control and Prevention (CDC) doesn’t recognize chronic Lyme disease as a diagnosis, and Jaller’s approach—which often includes long-term intravenous antibiotics—is so controversial that he was put on probation last year by the Maryland Board of Physicians. At 60, Jaller is part of a cadre of renegade doctors who follow guidelines created by the International Lyme and Associated Diseases Society (ILADS), a Bethesda-based organization that views chronic Lyme disease as an acceptable diagnosis and encourages doctors to treat it.
Although Brinsfield believes Jaller has saved her from the total misery she used to feel, the mainstream medical community doesn’t buy into the chronic Lyme disease diagnosis and says that doctors who do may be putting their patients in danger. Experts fear that the use of long-term antibiotics raises the threat of antibiotic-resistant bacteria. In addition, the medications are often administered intravenously, which can lead to complications. More than anything, scientists warn, patients diagnosed with chronic Lyme disease may have other serious, even deadly conditions that their doctors are overlooking.
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Montgomery County is in the heart of Lyme disease territory. Last year, the county had 134 confirmed and probable cases, up from 87 in 2014. “I’m not sure that the numbers reflect the true burden of the disease, because I think it’s often unreported,” says Cindy Edwards, senior healthcare administrator for communicable disease and epidemiology for the Montgomery County Department of Health and Human Services, which gathers the statistics.
According to the CDC, about 30,000 cases of Lyme disease are reported each year by state health departments and the District of Columbia, though the actual number of cases may be 10 times higher. In 2014, more than 96 percent of the cases came from just 14 states in the Northeast—including Maryland and Virginia—and the upper Midwest.
Lyme disease is ancient. A 5,300-year-old frozen mummy found in the Alps showed signs of it. But it was only documented after children in Lyme, Connecticut, experienced arthritis, a rare diagnosis for young people, in 1975. Researchers tracked the disease to the black-legged tick, sometimes known as the deer tick because it’s often found on deer. The ticks pick up a bacteria called Borrelia burgdorferi from field mice or other infected animals. When they bite again, the infected ticks pass on the bacteria to their hosts, causing Lyme disease. Barely bigger than a pencil point when they’re young, the ticks often hang on grasses waiting for animals—including humans—to pass. Many people are bitten without noticing the tick, and some develop Lyme disease but don’t get the bull’s-eye rash.
Patients treated with antibiotics in the early stages of Lyme disease usually recover quickly, according to the CDC. But the symptoms don’t go away in 10 percent to 20 percent of patients. The CDC has come to recognize a condition called Post-treatment Lyme Disease Syndrome (PTLDS), in which patients diagnosed with Lyme disease still exhibit signs of the illness more than six months after they’ve finished their antibiotics. These patients, about five times more women than men, complain of a baffling array of symptoms—aches and pains, facial paralysis, anxiety, brain fog, chronic fatigue—that they can’t shake. Doctors often are unable to determine what’s wrong with them, in part because their symptoms are so common—most people feel tired, achy or forgetful sometimes—that the causes are hard to pinpoint.
Experts say PTLDS isn’t just another way of describing chronic Lyme disease. Patients diagnosed with PTLDS have had Lyme disease and taken medication for it but still exhibit symptoms that have no other explanation. Some of Jaller’s patients, on the other hand, have never been diagnosed with Lyme disease, but he still believes they have a chronic form of the illness based on their symptoms and medical histories. “The problem with the term ‘chronic Lyme disease’ is that it can mean very different things for very different people,” says Dr. Adriana Marques, chief of the clinical studies unit at the National Institutes of Health’s Laboratory of Clinical Infectious Diseases. The phrase has become a catchall for a variety of ailments that may have nothing to do with Lyme disease at all, she says.
Mainstream medicine has found no cure for PTLDS. “Nothing has been proven,” Marques says. But chronic Lyme doctors say they can treat the disease and make patients feel better.
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Melissa Brinsfield, who was first treated for Lyme disease in 1998, still suffers from fatigue and unexplained aches and pains. Two years ago, Dr. Daniel Jaller diagnosed Brinsfield with chronic Lyme disease, and she credits him with helping her get better. Photo by Liz Lynch.
Until she met Jaller in 2014, Brinsfield struggled to find the cause of her suffering. “If it’s not Lyme disease, then what is it?” she says. “Nobody can answer that.” Even now, it’s hard for her to make weekend plans because she’s often exhausted. Dating is out of the question.
When her symptoms intensified five years ago, one doctor suggested that Brinsfield had fibromyalgia, a disorder that can cause pain, fatigue, memory problems and mood issues. But there’s no cure for fibromyalgia, just medicine to treat the symptoms. “That’s not good enough for me,” she says.
She went from her general practitioner to a rheumatologist to a neurologist to a cardiologist looking for answers. Nearly 15 years had passed since she’d been bitten by a tick—she never dreamed she could still be suffering from Lyme disease. But when lab work in 2012 showed the earlier bout with Lyme—like chicken pox, evidence of the illness can remain in blood for a lifetime—Brinsfield’s general practitioner suggested she try a Lyme disease specialist. That’s when she called Jaller.
Brinsfield, now 39, liked the doctor’s candor. “This is going to be a marathon, not a sprint. I’m not going to lie to you,” she remembers him telling her. “You need to think in terms of months and years, not days and weeks.” She didn’t feel like he was trying to sell her anything, like other doctors she’d seen, and he spoke in a way she could understand. “I should be your last resort,” he said. “I want you to feel educated about Lyme disease before you come to me.”
Jaller prescribed a combination of intravenous antibiotics, anti-malarial drugs—for related infections—and other medications to improve Brinsfield’s concentration and ease her pain, depression and anxiety. He recommended hyperbaric oxygen therapy, in which patients take in pure oxygen in a pressured environment to help the lungs absorb it.
Hyperbaric chambers are famously used to help scuba divers with decompression sickness, but Jaller believes they can also help patients suffering from neurological problems.
Unlike most of the doctors she had seen, Jaller offered her hope, Brinsfield says. So she kept going back to him.
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