I don’t believe in the Loch Ness monster. I don’t think government scientists are autopsying aliens in Area 51 or plotting a vast conspiracy from a bunker at the North Pole. But for the past two years, I’ve lived through an experience that has felt, at times, like a real-life episode of “The X-Files.”
What happened is this: My husband became frighteningly, mysteriously ill. And when two doctors finally fit the puzzle pieces of his symptoms together, we discovered that, according to medical authorities, his disease does not officially exist.
Pat’s symptoms came on gradually — so gradually, it took us years to realize he was sick. Longtime hikers, in 2008 we backpacked through Washington state for five days, lugging 45-pound packs over rugged mountain passes rippling with wildflowers.
“This seems a lot harder than it usually does,” Pat remarked one day, taking an uncharacteristic rest break halfway up a hill. Then his muscles began to stiffen up after long car rides. In 2009 his usual runs on the treadmill became too taxing. By June of 2010 Pat couldn’t make it to the gym at all. He was so tired, he needed a two-hour nap every night after work. One night he got home an hour late: He’d forgotten the name of our Metro stop and had kept riding the trains back and forth until he remembered.
Guessing that, at age 49, his problem might be hormonal, Pat made an appointment with an endocrinologist. While he waited six weeks for the appointment, he started wearing wool socks to bed because his feet were now inexplicably freezing. He began to stumble when walking, occasionally bumping into walls. The joint pain started up a few weeks later: a feeling of electrical shocks shooting through his knees and elbows. Numbness in his hands began making it hard to type. He’d sometimes choke while drinking and stumble over words.
When Pat finally saw the endocrinologist, the doctor confidently dismissed the odd array of symptoms as impossible. “The mind is very powerful,” he explained.
Pat’s next stop was my internist, whom I trusted. She talked to him for an hour and gave him a quick exam. “Based on your symptoms,” she said, “I think you might have chronic Lyme disease.”
I was surprised. It seemed like an obscure disease, even though I’d read that Lyme-carrying ticks were thriving in the Washington area. Pat could have picked up a tick while hiking in the woods or from a bush while walking through the front yard. The Lyme test came back negative, but my doctor started him on antibiotics anyway. The tests weren’t always accurate, she explained, and Pat’s symptoms were spot on. He would need to see a chronic Lyme disease specialist to confirm the diagnosis.
Then she continued, “I have a friend in New York with chronic Lyme, and she has to drive to Connecticut to see a doctor. The politics . . . they’re just terrible.” Terrible politics? In retrospect, when I think of that moment, I picture myself stepping through the looking glass like Alice, entering the topsy-turvy world beyond.
A controversial diagnosis
Pat called the Lyme disease specialist, and I started researching. I wanted to find out more about what my internist had told us: that Pat had possibly had Lyme disease for years, which could explain his gradually worsening symptoms. This long-term version of the disease is called chronic Lyme disease by some doctors, who believe that ongoing symptoms are caused by ongoing infection that must be treated.
at’s case was different from that of the typical patient who gets a Lyme disease diagnosis immediately after becoming infected. These people often spot the tick that carries the disease on their skin, or they develop a telltale rash within a few days. Infected with Lyme disease bacteria for only a week or two, such patients recover completely after taking 14 to 21 days of antibiotics.
Pat never spotted a tick or a rash. He didn’t get sick right away. Instead, it was possible that he had graciously hosted his Lyme bacteria for years, giving his unwelcome guests plenty of time to reproduce and deeply infiltrate his organs, muscles and nervous system. If this were the case, Pat would need to take antibiotics for six months or longer to recover.
A few years earlier, something similar happened to a friend’s teenage daughter. An honor-roll student who took several dance classes each week, she became so fatigued that she had to sit out much of her senior year of high school. She suffered from joint pain so severe that she sometimes just lay on the sofa and wept, and she lost her ability to read. One neurologist declared that she was merely anxious, but another doctor diagnosed chronic Lyme disease. After a year of antibiotics, she was well enough to start college.
I began my research on the Web site of the National Institute of Allergy and Infectious Diseases, part of the National Institutes of Health. “Lyme disease can usually be successfully treated with 3 to 4 weeks of antibiotic therapy,” it stated. “After being treated for Lyme disease, some patients still report non-specific symptoms, including persistent pain, fatigue, impaired cognitive function . . . . These patients . . . may be diagnosed with post-Lyme disease syndrome. Studies have shown that more antibiotic therapy is not beneficial and the risks outweigh the benefits.”
I was puzzled. Why did the NIH say long-term antibiotic therapy was not effective? Although it was only one case, my friend’s daughter had apparently been cured by it. And at this point, Pat had been taking a single antibiotic for about six weeks and was clearly getting better. After a week on the drug, the numbness in his hands started to recede. After a month, he stopped gagging while he drank. But he was still extremely sick, and it seemed clear that stopping the treatment would be a disaster.
When I got to the Web sites written by Lyme disease patients and advocacy groups, the news was worse than puzzling. They reported that some doctors who treat chronic Lyme disease had been investigated by state medical boards, and some had lost their medical licenses. Why? According to the guidelines put together by the Infectious Diseases Society of America (IDSA), the acknowledged medical experts in this case, chronic Lyme disease doesn’t exist or, as IDSA puts it, “there is no convincing biologic evidence” for it.
Instead, any patient who’s still sick after taking a month or two of antibiotics is suffering from “post-Lyme disease syndrome,” usually defined as an autoimmune reaction for which there is no treatment.
I’m not comfortable coloring outside the lines. If credible authorities tell me that a diagnosis is bogus, I believe them. I might have told Pat to cancel his appointment with the Lyme specialist, except for two things: First, I knew someone who had the same symptoms as Pat, and she’d apparently been cured by a year of antibiotics. Hers didn’t seem to be an isolated case, as I’d found dozens of strangely similar stories in my research. Also, I trusted my internist.
I felt as if we’d landed in the middle of a war. Pat, who had been climbing mountains a few years ago, now struggled to walk a city block. Both my internist and the Lyme specialist believed that chronic Lyme was treatable and that Pat could recover. But the standard medical authorities were telling me that this condition didn’t exist and the proposed treatment was ineffective and harmful. What were we supposed to do?
In November 2010 I accompanied Pat to his first appointment at a Lyme disease clinic. During my research, I’d discovered that a state medical board had once suspended the license of the clinic’s doctor for prescribing long-term antibiotics. I felt like an outlaw entering that office — and also like someone desperate for help.
Staff members ordered more tests to screen out look-alike diseases. Blood tests and a brain scan ruled out a host of conditions. Chronic Lyme disease seemed to be the diagnosis that fit. Pat was prescribed a variety of drugs to control his symptoms, plus multiple antibiotics to fight the infection. He would need to take the drugs for the next year or so. Pat started swallowing about 25 pills a day, and the pace of his recovery picked up.
Searching for answers
I’m not a scientist. I don’t know exactly what’s causing Pat’s symptoms, or how they’re related to the bacteria carried by a tick. In some ways I’m not surprised that doctors don’t have ready answers, because Lyme disease was pinpointed only 35 years ago (it’s named for Lyme, Conn., where a cluster of cases was first identified), and it’s still considered an emerging disease.
Here’s what I do know: Just because scientists don’t understand the cause of a disease doesn’t mean that it doesn’t exist. Back when patient-reported symptoms were all doctors had to go on, some practitioners dismissed multiple sclerosis as “faker’s disease.” Then magnetic resonance imaging was invented, and doctors could see the brain lesions that explained the symptoms patients complained about.
Like those MS patients who were once called fakers, chronic Lyme disease patients are trapped in a nightmare. I see only one solution: We need to pick apart the tangled causes of this disease and find the most effective treatments.
NIH is the logical choice to create a national research agenda and, in the process, set up a series of long-term, clinical trials with Lyme disease patients. Researching Lyme disease fits with the NIH’s history of focusing on specific diseases (such as cancer), emerging diseases (such as HIV) and diseases that lack clear explanations (such as those being studied in the agency’s Undiagnosed Diseases Program).
The government needs to act soon, because the number of Lyme cases is growing. In 2010 the Centers for Disease Control and Prevention reported 30,000 new and probable cases of Lyme disease. For people living along the East Coast, the situation is urgent. Just 12 states accounted for 94 percent of all Lyme cases reported in 2010, including all but one of the coastal states from Virginia to Maine.
Escape from the underworld
In the spring of 2011, Pat made a joke. Hearing him laugh and goof around for the first time in months was like seeing the first spring crocus poke through the patchy snow. He was making his way back from the underworld of illness. Today, 15 months after starting antibiotic treatment at the Lyme clinic, Pat says he’s about 75 percent better. He still can’t go running, but we recently took a three-mile hike together.
Western medicine has never been good at dealing with the unknown. Our system loves tests, clinical data, yes-or-no answers. Solving a medical mystery such as Lyme disease is quite a bit trickier. We possess the most advanced medical technology, yet the unknown, in the form of an emerging disease, still has the power to baffle us. It’s time to harness the power of our labs, researchers and government agencies, and start looking for answers.
McClellan is a freelance writer and photographer. This article was excerpted from the journal Health Affairs and can be read in full here.