Doctors couldn't agree on the cause of my husband’s debilitating symptoms, much less how to treat them. Now, new estimates on the prevalence of Lyme disease are bringing the debate to the forefront.
It started with a few mysterious symptoms. I noticed my husband, Pat, wincing when he got out of the car after a long drive. “I’m so stiff,” he said, puzzled, because why would a 49-year-old man who backpacked in the mountains for fun have trouble sitting in a car?
Then he began feeling unusually tired. Pat stumbled over words. Every once in a while, he had trouble swallowing, as if he’d forgotten exactly how to do it. His neck was stiff and he bumped into walls while walking around our apartment near Columbia Pike. His feet felt icy no matter how many pairs of socks he put on. One night, he forgot the name of our Metro stop and had to ride the train up and down the Orange Line until he remembered it.
About six months after Pat’s initial symptoms, the first doctor he saw explained them away by saying, “The mind is very powerful.” After being told his problems were all in his head, Pat went to see my doctor, Kate Lemmerman, a family practitioner in McLean. She listened to him talk for an hour, gave him an exam and came up with a preliminary diagnosis: Lyme disease. Fortunately, she said, there was a practice in D.C. devoted exclusively to Lyme disease: the Jemsek Clinic. Pat called for an appointment.
If our lives came with a soundtrack, perhaps he would have heard bursts of gunfire and the roar of helicopters during that phone call, because it turned us into unwilling combatants in a bitter medical disagreement known as the Lyme Wars.
Everyone agrees about the basics of Lyme disease. It’s caused by a bacterium that’s spread by the bite of a tick. (The East Coast and Midwest carrier is the black-legged tick.) Shortly after being infected, some people develop a rash shaped like a bull’s-eye and come down with flu-like symptoms. An infection caught at this stage is usually cured with a short course of antibiotics. That’s the good news.
The bad news is that Virginia sits at the southern tip of America’s largest hot zone for Lyme. According to the Centers for Disease Control and Prevention (CDC), 95 percent of those who came down with Lyme disease in 2012 lived in one of the 11 states stacked along the East Coast from Virginia to Maine, or in Wisconsin or Minnesota. Counties in Northern Virginia, including Arlington, Fairfax and Loudoun, report some of the highest rates of Lyme infection in the state.
The worse news is that a minority of people who contract Lyme disease don’t get better quickly, and those are the cases that doctors are fighting over. In one corner of the ring: the powerful Infectious Diseases Society of America (IDSA), which contends that Lyme disease is easy to detect and treat, that any infection can be cured with three-to-four weeks of antibiotics, and that long-term or persistent Lyme infection doesn’t exist. The challengers are doctors affiliated with the International Lyme and Associated Diseases Society (ILADS). According to ILADS, symptoms like Pat’s are typical of a Lyme infection that’s gone untreated for a long time or become entrenched, a form of the disease they call “chronic Lyme.” More to the point, they believe that these symptoms can be eradicated with an extended course of antibiotics and that people such as Pat can regain their health.
Of course, doctors disagree all the time, about everything from back surgery to hormone replacement therapy. But when it comes to the fight over Lyme disease, their opposing viewpoints prevent people who are extremely sick—often sick enough to lose their jobs or need a wheelchair—from getting a treatment that could help them. While Pat was waiting for his appointment with the Lyme specialist, I read a stack of articles on the subject from reputable magazines and newspapers, including Forbes, the Chicago Tribune, and the Los Angeles Times. Many said that chronic Lyme disease did not exist. Some characterized Lyme specialists as quacks who preyed on desperate people. It took even more digging to find out there were doctors and researchers who saw things differently, who could point to scientific studies that supported their views.
A month after Pat started treatment with a combination of antibiotics, his swallowing problem disappeared. A few weeks after that, the tingling in his fingertips went away. One by one, his symptoms began to clear up. I knew we’d made the right choice, and I tried to forget about the Lyme controversy.
Then, in September 2011, I met a new acquaintance, Julie Hall, who also lives in Arlington, near Marymount University. When I mentioned Pat’s illness to her over coffee, she nodded in sympathy. She was just 30 years old, an avid snowboarder and rock climber, and yet was going through her own health crisis. The strange thing was, the more we compared notes, the more it looked like her crisis was the same as Pat’s, with one difference. Julie was getting sicker.
About six months earlier, she had woken up one morning feeling stiff. Within six weeks, her muscle pain was so intense that she had trouble holding a toothbrush. She also noticed that her rings felt uncomfortably tight, and that her wrists and knees looked swollen. She started visiting doctors: first, her primary care physician; then a rheumatologist, who sent her to a neurologist; and finally an infectious diseases specialist. No one could give her a diagnosis.
“I always thought that if you got sick, you go to the doctor, and they know what’s wrong with you, and they help you get better, even if it’s something serious,” Julie said. “But they didn’t even know what was wrong with me.”
Eight weeks after the onset of her symptoms, Julie was tired all the time. Her joints were so painful that she could no longer grip a steering wheel or walk the dog. She’d been writing a novel, but now she had trouble remembering words. “At one point,” she says, “I thought, I’m dying, and they just don’t know what it is. ”
Searching the Internet for answers, Julie kept coming across Lyme disease. Its symptoms seemed to match her own. She asked the infectious diseases specialist about it, and was told, “People who treat chronic Lyme are zealots, and they don’t know what they’re doing.” After Julie insisted on a blood test for Lyme, the rheumatologist told her, “The test came back negative, and those tests are 100 percent accurate.”
She didn’t know there were other doctors who disagreed, vehemently, with both those statements. According to ILADS, the blood tests that are currently used miss Lyme infections in up to a third of patients. Because ILADS doctors believe the tests are unreliable, they stress that Lyme disease is diagnosed clinically, based on symptoms, medical history and physical exams.
Eventually, Julie was diagnosed with rheumatoid arthritis. When I told her I knew a local doctor who specialized in treating Lyme, she made an appointment. “The rheumatologist can’t explain my other systems,” she said. “The ones that don’t fit with arthritis.”
Every few months, I hear about someone else like Julie, who was told that she couldn’t possibly have chronic Lyme, and I wonder how many people are not investigating a treatment that could cure them, because they hear only one side of the story. For example, it’s true that no scientific study has proved that long-term antibiotics are effective for treating Lyme infections. But it’s also true, according to ILADS, that “there has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease.”
In reality, doctors are treating Lyme patients ahead of the research that would ideally guide them, much the way doctors treated AIDS in the early days of that epidemic. The bacterium that causes Lyme wasn’t identified until 1982. Now the controversy swirling around it has delayed the very research needed to resolve the conflict and find the best treatments.
There is one very potent argument in favor of treating chronic Lyme disease. For many people, taking a combination of antibiotics and other drugs over a period of months to several years works. Last summer, novelist Amy Tan wrote about her struggle with late-stage Lyme in The New York Times, explaining that besides suffering from joint and muscle pain, exhaustion and seizures, she could no longer focus enough to work. Yet “after three months of antibiotic treatment,” Tan stated, “I could write again.”
Skier Angeli Vanlaanen recently competed with the U.S. team at the Sochi Olympics, despite having had her career sidetracked by a case of chronic Lyme. After taking three years off to get treated, Vanlaanen was well enough to begin training again. Critics of treatment for chronic Lyme often scoff that case studies aren’t data. But it’s hard to dismiss the persuasive power of seeing someone “come back to life” after a serious illness.
Several common myths prevent sick people from investigating whether they might have Lyme disease. The first is, you haven’t been exposed to Lyme if you’ve never spotted a tick on your skin or seen a bull’s-eye rash. But the tick that transmits Lyme disease can be as small as a poppy seed; and according to ILADS, fewer than 50 percent of Lyme patients remember seeing a tick or a rash. Anyone who lives in Northern Virginia may have been exposed to Lyme disease.
Another point of contention concerns Lyme patients whose doctors give them three-to-four weeks of antibiotics and then tell them they’re cured because no Lyme infection can survive that treatment. According to Lemmerman, “I think in general people need longer treatment… If you don’t feel back to normal after three weeks of antibiotics, then you need to go see an expert.”
Of course, there’s no reason to be treated for Lyme disease if you don’t think you have it, but it is wise to remember that Lyme can be difficult to diagnose. Some people who have been treated for chronic Lyme and recovered were initially diagnosed with fibromyalgia (another condition characterized by fatigue and muscle pain), chronic fatigue syndrome or arthritis. Many Lyme specialists say that anyone experiencing joint pain along with extreme fatigue and at least one neurological symptom, such as memory loss, should consider being checked for Lyme.
The CDC has been tracking a steep rise in Lyme cases for years, but last August, it made a stunning announcement. It changed the official estimate of how many people nationwide contract Lyme each year from 30,000 to 300,000. Overnight, Lyme became six times more common than HIV/AIDS, which afflicts 55,000 new persons in the U.S. annually.
If the CDC can be so wrong about such a basic fact, what does that mean for our understanding of Lyme disease? It’s possible that the debate over chronic Lyme is so fierce simply because there’s so much we don’t know yet. In his recent book, Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease, Richard Horowitz, a Lyme specialist in New York state, posits that other tick-borne diseases may be to blame for much of the confusion about Lyme treatment. Over the past 30 years, researchers have discovered that the same tick that carries the Lyme bacterium has begun to carry and transmit other bacteria and viruses.
The black-legged tick has become nature’s dirtiest needle. Today, one tick bite can infect a person not just with the bacterium that causes Lyme but also with any number of other organisms, such as Babesia, which causes babesiosis, a malaria-like illness treated with drugs that are different from those used to treat Lyme.
As the debate continues, more combatants have started entering the fray, notably state governments. In Virginia, a law that went into effect on July 1, 2013, requires practitioners testing patients for Lyme disease to give them written information that includes the statement, “If you are tested for Lyme disease, and the results are negative, this does not necessarily mean you do not have Lyme disease.” I applaud this new law. When a doctor told Julie Hall that her negative Lyme test was 100 percent accurate, she stopped seeking information about the disease. But as it turned out, Julie did have Lyme.
A year after Julie began Lyme treatment with a combination of antibiotics, her swollen joints were so much better that she could put her wedding ring back on. A few months later, she vacationed in Colorado with her husband, Lucas, expecting to spend a lot of time resting. But after they arrived, she felt well enough to go snowboarding again. A few months after that, she was rock climbing, pain-free.
I understand that doctors don’t agree, and I don’t think that any doctor intentionally meant to harm Julie. But the Lyme debate got in the way of her finding the right treatment. Unfortunately, Northern Virginia seems to face a future in which more people than ever before will contract the disease. Environmental changes may account, at least in part, for the rise in reported Lyme cases over the past three decades. Recent studies have pointed to the loss of biodiversity, the fragmenting of forested areas and climate change as possible explanations.
Lemmerman estimates that when she began practicing in the area 15 years ago, she diagnosed Lyme disease once or twice a year. Now, she says, “it’s a couple of times a month.… I really do think it’s much more rampant than people realize, and the treatment is trickier than people realize. It’s out there, and it’s being missed all the time.”
During the first dark winter of Pat’s treatment, he slept through entire weekends and got tired if we walked a block. Two and a half years later, we took a vacation out West, planning to do a lot of wildlife watching from the car. But our short hikes got a little longer each day, until we were amazed to find that Pat could walk five miles through the mountains. One day, he had enough energy to get up before dawn, and we were rewarded with the sight of two wolf puppies playing in front of their den, pouncing and wrestling in the light of a rising sun.
Since the day Pat got sick, I’ve been waiting for the moment when he can say he’s completely recovered, and that we have our lives back. But now I’m also waiting for something else. I’m waiting for the day when other people won’t have to go through what we did and won’t be told their illness is a myth or “all in their head.”
Recently, doctors and researchers have called for a “Manhattan Project” approach to solving the Lyme disease debate once and for all. Funding is needed to develop a reliable blood test and to find the most-effective treatments.
Faced with a growing epidemic, it’s more important than ever that we achieve the simple kind of health care for Lyme patients that Julie Hall once imagined: If you get sick, you go to the doctor and the doctor helps you get better.
History: Lyme disease was identified in 1975 and is named after the town of Lyme, Conn., where it was first noticed and extensively studied.
Transmission: It’s caused by a spiral-shaped bacterium called Borrelia burgdorferi. Ticks pick up the bacterium from infected animals, such as white-footed mice, and transfer it to humans through their bites. The black-legged, or deer, tick (Ixodes scapularis) transmits the bacteria in Virginia and most other regions of the country; the western black-legged tick (Ixodes pacifica) spreads the bacteria on the Pacific Coast. Adult ticks are about the size of a sesame seed; immature ticks are the size of a poppy seed.
Signs and Symptoms: In its early stages (three to 30 days after a tick bite), Lyme often produces a red, bull’s-eye rash and flu-like symptoms, including fatigue, headache, fever, swollen lymph nodes, and muscle and joint aches. Left untreated, the infection can cause expanding of the rash, neck stiffness and severe headaches from meningitis, pain and swelling in large joints, heart palpitations, short-term memory problems and Bell’s palsy (loss of facial muscle tone). It is not known whether chronic Lyme can eventually cause death.
Diagnosis: How best to confirm the presence of Lyme disease is a controversial subject. The Centers for Disease Control and Prevention (CDC) advocates a two-step blood-testing process, while the International Lyme and Associated Diseases Society (ILADS) contends that blood tests can be unreliable. ILADS stresses that Lyme should be diagnosed clinically, based on symptoms and medical history.
Treatment: Lyme disease is treated with several common antibiotics. According to the CDC, a 21-day course of antibiotics is sufficient to treat infections in the early stages; however, some doctors disagree and treat patients until their symptoms disappear. The treatment of chronic Lyme disease with one or more years of antibiotics is controversial, as critics contend that long-term antibiotic use may be harmful to patients.
Vaccine: There is currently no vaccine for Lyme disease.
Preventing Tick Bites
- Avoid walking through brush and long grass.
- Protect your pets from ticks.
- Wear insect repellent containing 30 percent DEET.
- When gardening or hiking off-trail, wear clothing treated with the repellent permethrin. Tuck your pants into your socks and wear a hat and long sleeves.
For more tips on avoiding ticks and keeping them out of your yard, see www.arlingtonva.us/departments/humanservices/publichealth/environmentalhealth/file64967.pdf.
Freelance writer Laurie McClellan has lived in Arlington for 22 years. She can be reached at firstname.lastname@example.org.
- Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease, by Richard Horowitz, contains a checklist of Lyme symptoms.
- Cure Unknown: Inside the Lyme Epidemic, by Pamela Weintraub, is the classic book on the history of Lyme disease and the Lyme Wars.
- Olympic skier Angeli Vanlaanen describes her recovery from chronic Lyme in the short film Lymelight, which can be viewed for free at http://vimeo.com/65479794.
For more information, visit the ILADS website at www.ilads.org.