The pain, like a screwdriver twisting hotly through her knee, was excruciating. And the swelling, well, you could see it ballooning through her pants.
Angela Coulombe, 42, had just run the 2007 Beach to Beacon–a 10-K along the picturesque coast of her hometown, Portland, Maine. She thought she had simply reignited an old injury (she had knee surgery back in high school). So she did what any athlete would do: rested, iced, and popped ibuprofen for a week. When that didn't help, she headed to the physical therapist. An MRI revealed nothing beyond unspecified knee inflammation. She began physical therapy, but a month in, the pain and swelling only worsened.
Then came the nausea, migraines, and fatigue. Coulombe's feet, elbows, shoulders, and back ached so much she couldn't sleep. She felt horrible and needed her mother's help to get her two young sons off to school in the morning, while her boss let her do some of her Web design work from home.
Three months after the 10-K, Coulombe noticed a red rash on her upper arm. Her mother looked at the bull's-eye shape and said the two words that would change Coulombe's life: Lyme disease. "As soon as she said that, I was like, Oh, my gosh, now all these symptoms make sense," Coulombe says, even though she couldn't recall having been bitten by a tick. "I thought, Oh, thank God. Lyme disease–there's a cure for this. This is awesome."
But it didn't take long for her to realize that it wasn't awesome at all.
Lyme disease is one of the fastest growing infectious diseases in America. The number of confirmed cases rose 51 percent between 2004 and 2009–from 19,804 to 29,959 cases. But experts at the Centers for Disease Control and Prevention suspected that the 2009 figure was too low. In 2013, the CDC conducted three new studies and concluded that the illness is 10 times more common than previously believed, with an estimated 300,000 Americans contracting the infection annually. Lyme disease has been reported in all 50 states; most cases are found in the Northeast, Mid-Atlantic, and Midwest. Although the illness was named for a town in Connecticut where the first U.S. outbreak occurred, New York, Massachusetts, Pennsylvania, and New Jersey have reported the greatest number of cases.
Some experts credit the rise of Lyme disease to deforestation, which is pushing more disease-carrying ticks into pockets of patchy woods common in cities and suburbs. Those areas also have more mice, which transmit the infection to ticks. Another possible growth factor is global warming: A Yale University study reports that increasing temperatures are giving ticks a longer opportunity for feeding, which then results in stronger and more persistent strains of Lyme.
But Coulombe didn't yet know any of this. She didn't know that by chalking up the initial signs to a running injury–and thus delaying diagnosis and treatment–she had given the infection an opportunity to spread throughout her body. And she didn't know that once that happens, precious little is known about how to treat it. "Once I got into it all," she says today, "it was a nightmare."
A stealth microbe. That's what researchers call the corkscrew-shaped bacteria–officially Borrelia burgdorferi–that causes Lyme disease. In the 1970s, doctors in Lyme, Connecticut, were perplexed by an outbreak of what seemed to be juvenile rheumatoid arthritis. Recognizing that most of the affected children lived near wooded areas, deer ticks became a point of interest. Experts now know that black-legged ticks pick up the Borrelia bacteria from birds as well as mice and other small mammals when they feed on them, and then pass it along to humans when they feed on us. That's usually from May to September, a popular time for runners to be out logging miles on woodland trails and in forested parks.
Quick tick removal lowers your risk of infection. Experts estimate that a tick must be attached for at least 24 to 48 hours to transmit the bacteria. But spotting one isn't so easy. "The tick is very clever," says Christine Green, M.D., an infectious disease specialist in San Francisco. "It wants to latch onto humans for a while, so it has evolved to put anesthetic chemicals on your skin so you don't feel it so much." Hard to feel and also hard to see, young ticks are the size of poppy seeds and love to burrow into hard-to-spot places like the groin, armpit, and scalp.
Unfortunately, the bacteria the tick can inject into your bloodstream is clever, too. "Lyme bacteria is highly evolved to evade our immune system's detection," says John Aucott, M.D., an infectious disease specialist and assistant professor at Johns Hopkins University School of Medicine. When it enters the body, it folds itself up, origami-style, so the immune system doesn't even know it's there for about two weeks.
Interestingly, the bacteria isn't wreaking havoc on your health; it is your body's attempt to fight it off that makes you feel so crummy. "It's a paradox, in that it's not actually very dangerous itself," Dr. Aucott says. "It's an incredibly benign organism–it doesn't want to kill the host, it wants to be undetected by the host." You only know the bug is there when your immune system starts trying to kill it.
Because Lyme symptoms tend to come on gradually, many people don't initially notice the signs. And when they do recognize something's amiss, Dr. Green says the early indicators–sluggishness, fatigue, muscle aches, joint pain–can easily be mistaken for the flu.
Or if you're a runner, you may think you're simply overtraining. "I've had athletic patients, runners and Nordic skiers, who thought their fatigue and aches were due to periods of hard training, but they were really suffering from Lyme," says Bill Roberts, M.D., a sports-medicine physician at the University of Minnesota.
Perry Louis Fields, a former elite middle-distance track athlete, made that assumption. "I felt rundown, but I thought it was because I was training hard." That is until Fields was in the second lap of the 800 meters at the 2005 USA Outdoor Championships and her legs went numb. "That's when I knew something was really wrong," says Fields, who wrote a book, Tick Slayer, about her five-year battle with the disease. "In my case, it was a problem that the symptoms of Lyme mimicked overtraining. I didn't get treatment early on."
The longer a diagnosis is delayed and the later treatment is begun (a three-week course of the antibiotic doxycycline is the standard therapy), the worse symptoms become. Patients start experiencing high fevers, migraines, dizziness, difficulty concentrating, stiff joints, and coordination issues, Dr. Green says.
Diagnosis becomes easier if you are lucky enough to get a red rash, the hallmark of the infection. But about 30 percent of folks don't get the rash–and others, like Coulombe, don't get one with the onset of symptoms. Adding to the confusion is that most people think the rash (the erythema migrans, as it is called) has to look like a distinctive bull's-eye, but more often than not it's simply round and spreads outward over time.
So suppose you do get the rash and you do recall a tick bite. You might think it's obvious that you have Lyme. But getting an official diagnosis is rarely that straightforward. In fact, there is no definitive diagnostic test for the infection–no method by which a doctor can detect the presence of the bacteria in a person's body. Instead, the CDC-recommended blood test is indirect–meaning, it looks for the presence of Lyme-specific antibodies fighting the bacteria. And that makes it quite easy to get a false negative (early in the infection, before your body has produced antibodies) or a false positive (detecting antibodies because you have been exposed to the bacteria at some point in your life).
Which is why some doctors don't rely entirely on the test for making a diagnosis. "The test can be helpful, but it shouldn't be the be-all-end-all, whether it's negative or positive," says Alan Barbour, M.D., a professor of microbiology and molecular genetics at University of California at Irvine who is a fellow at the Infectious Diseases Society of America. "In an area where Lyme is common, doctors have gotten good at diagnosing it based on other symptoms, such as persistent flu-like symptoms occurring in the spring through fall in a person who spends time outdoors."
That's what happened to elite runner Ben True, who trains in Hanover, New Hampshire. In June 2012, two days before he left to compete in the U.S. Olympic Track and Field Trials, True was tested for Lyme. "I was absolutely exhausted, everything ached," he says. "I thought I had the flu, but my massage therapist thought it sounded like Lyme."
False-negative test aside, True's experience was a cut-and-dried case: An early diagnosis led to early treatment, and he recovered. True has no lingering symptoms. Not everyone is so fortunate.
Three months after Coulombe's knee started to ache, when she finally got the rash, she went to an infectious-disease doctor. Like True, her test came back negative, and her doctor made a Lyme diagnosis based on her symptoms and prescribed doxycycline. But unlike True, her health didn't improve. Suddenly, she could no longer raise her arms above her head or twist her neck or climb the stairs. She called her doctor, thinking she needed more drugs, but he said the first prescription would have killed all the Lyme bacteria, and her current afflictions could not be the result of an active Lyme infection that he could treat. "I thought, My God, what do I do now?" she says.
Coulombe had unknowingly stepped onto the battlefield of the so-called Lyme Wars, a dispute being bitterly waged over the most basic yet unanswered scientific questions–Why do some people remain sick after treatment and how should they be cared for? Her doctor believed that lingering Lyme symptoms should not be treated with repeat rounds of antibiotics. But not every medical expert agrees.
It's a fact that some Lyme sufferers remain ill after the standard protocol of antibiotic treatment. According to the CDC, as many as 20 percent of patients continue to have chronic symptoms that can last for years. Doctors on both sides of the debate understand this. "If people don't get treated right away, it can spread to other parts of the body and then you can have problems," Dr. Barbour says. After the early symptoms of Lyme come on, the bacteria can then embark on a marathon slog through the bloodstream, infiltrating the joints, heart, and nervous system, which can produce an array of ongoing symptoms–from Bell's palsy to cognitive issues, cardiac problems to chronic pain.
While researchers have recently given this phenomenon a medical term–Post-Treatment Lyme Disease Syndrome (PTLDS)–the exact cause of the "medically unexplained" symptoms remains a mystery. "If I knew that, I'd get the Nobel prize," Dr. Aucott says. "That's what our research is on, but no one knows. There's no FDA-approved treatment for PTLDS, there's no diagnostic test to know who's going to get it and who isn't. It's pretty much a black box right now. This is a world-class dilemma. We think it is a real biological phenomenon; we just don't know yet what it is."