When Jennifer Farrell suffered from fever, chills, and fatigue a couple of years ago, she chalked up the flu-like symptoms to crazy spring weather fluctuations that went from hot to cold almost overnight. Then the back of her neck started aching. Within days, the pain was so severe—a feeling she describes as “like a dog biting your neck and pulling really hard”—she had to rush out of a funeral to go to the emergency room. The diagnosis: a pinched nerve.
Farrell followed up with her family physician, who asked, “Why weren’t you tested for Lyme disease?” But Farrell couldn’t find a bite mark and didn’t have the resulting circular “bull’s-eye” rash that’s often a telltale sign of the bacterial illness. Even though the 30-year-old advertising executive lived in the woodsy town of Summit, New Jersey, she hadn’t been hiking in an area where she could have been exposed to infected ticks that transmit the disease. Still, the doctor ordered a blood test and called her a few days later with the results: “You tested positive for Lyme,” she said. “Get in here now.”
How to Spot Lyme Disease Symptoms
Farrell was treated with antibiotics and anti-inflammatory medication to reduce the swelling in her neck from meningitis (inflammation of the brain and spinal cord membranes), a common symptom of Lyme disease. Three exhausting weeks later, she started feeling better. “I’m so glad my doctor suspected Lyme when she did. I could have had major complications,” she says. “All I can say is that if you have lingering flu symptoms, don’t brush them off. Get tested as soon as possible.”
“It’s a horrible feeling to be getting worse every day and not get the help you need.”
Lyme disease has always seemed like something of a public health mystery. Though 70 percent of patients develop a rash within three to 30 days of a tick bite, many don’t connect symptoms like fatigue, chills, fever, headaches, muscle aches, and joint pain to Lyme disease. “Some people don’t become ill at all or might not remember getting bitten,” explains Paul Auwaerter, MD, clinical director of the Division of Infectious Diseases at Johns Hopkins Medicine. (Farrell now believes a tick jumped on her from a dog.)
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Stories abound of people who spend months or years in doctors’ offices trying to find out what’s wrong with them, while their Lyme disease spreads. The illness affects the brain, nerves, cardiovascular system, liver, and eyes. Symptoms can also include sleepiness, loss of muscle tone on one or both sides of the face, and shooting pain in your limbs or arthritis, especially in the knee. “These cases can be harder to resolve. If they’re not diagnosed properly, patients might not improve as quickly,” says Auwaerter.
Why Diagnosis Is More Difficult Than You’d Think
College student Jordan Landerman, 21, spent more than a year visiting a dozen doctors with complaints of everything from dizziness, throat spasms, and nausea to weight loss before being diagnosed with Lyme disease last summer.
“We’re so worried about exotic diseases…but we need to remember that one of the worst is in our backyard.”
“Blood tests kept coming back abnormal, but no doctor could tell me why. I was [told I was] anorexic one day. I had GERD the next, then mono, then depression,” says Landerman, who believes she was infected while training for a marathon near the California Polytechnic State University campus in San Luis Obispo. “It’s a horrible feeling to be getting worse every day and not get the help you need. It starts to make you think you’re crazy.”
Now, during an exceptionally painful recovery from late-stage Lyme and several co-infections, she’s been taking antibiotics for eight months. (How long Lyme patients should be treated with antibiotics is another source of debate.)
Making the issue even more confusing, there’s controversy about whether patients who have chronic conditions, such as “brain fog,” anxiety, irritability, and hearing and vision problems, are truly infected by the Lyme bacteria Borrelia burgdorferi—or if they should be classified as having “post-Lyme disease syndrome.” Explains Auwaerter: “Doctors might label something as chronic Lyme disease when they don’t understand what’s going on. It can be a catch-all diagnosis that’s adopted too liberally,” he says. “That’s not to say Lyme disease can’t be severe, but for most people, it’s a treatable illness that won’t result in the ruination of your life.”
Could Lyme Disease Be Worse Than Ever This Year?
What is clear is that incidences of Lyme disease are on the rise. Over the last decade, it’s grown steadily, and about 300,000 people in the U.S. are diagnosed annually with the illness, according to the U.S. Centers for Disease Control. The increase follows better surveillance and reporting practices. But it may also be the result of more people moving into suburban housing developments built near reforested areas full of blacklegged (also called “deer”) ticks, explains Sarah Hook, who researches Lyme disease for the CDC’s National Center for Emerging and Zoonotic Infectious Diseases.
Although 95 percent of cases are reported from 14 states in the Northeast and upper Midwest, there are also clusters in western Washington, the Bay Area and northeast Texas. This year’s record snowfall, which protects ticks from freezing, might mean we’re in for a doozy of a Lyme season this spring, climate experts say.
The challenge: Convincing people to take the threat of Lyme disease seriously and protect themselves. In a 2012 CDC study of more than 3,500 people, 21 percent said that a member of their households had found a tick on his or her body within the previous year, yet more than half did not take steps to prevent tick bites during warm weather.
Want to know how to avoid Lyme disease? Here are tips from the CDC:
• Walk in the center of trails when hiking, and avoid areas with lots of plants and fallen leaves.
• Use repellent that contains 30 percent DEET on exposed skin.
• Treat clothing and gear, such as boots, pants, socks, and tents, with the insecticide permethrin.
• Shower as soon as possible after coming indoors to wash off and more easily find crawling ticks before they bite you.
• Remove all attached ticks as soon as possible. The longer they remain attached, the greater chance they have of transmitting disease.
• Check pets for ticks and talk with your veterinarian about using tick control products on your pet.
Finally, keep your guard up, especially if you live in a high-risk area. “I knew nothing about Lyme before I got sick,” says Landerman. “We’re so worried about exotic diseases like Ebola or West Nile, but we need to remember that one of the worst is in our backyard.”