Could You Have Lyme Disease + Not Even Know It?

The scary truth about this sneaky illness. (PHOTOGRAPH BY VISUALS UNLIMITED INC./WIM VAN EGMUND/GETTY)

After you get home from a glorious summer hike, you probably do a few things: post photos of the great outdoors to Instagram, take a quick shower, and chow down on some post-workout snacks. But if checking yourself for ticks isn’t a part of that routine, you might be leaving yourself open to Lyme disease. “It happens frequently that people have Lyme disease and don’t know it,” says Andrea Gaito, M.D., a rheumatologist with a private practice in Basking Ridge, New Jersey.

Lyme disease is a bacterial infection transmitted by tick bites, especially those from deer ticks. Approximately 70 percent of deer ticks are infected, says Gaito. And those of you in New York, New Jersey, and Pennsylvania should be on high-alert: Your states have the highest rates of Lyme disease, which is much more manageable when caught early on, says Gaito.

Lyme disease can easily go undiagnosed, mainly because the symptoms are diverse and easily misattributed. When this happens, you can develop what Gaito calls “late-stage or chronic” Lyme disease, which is less likely to respond to antibiotics, resulting in ongoing, potentially debilitating symptoms.  "The effects of Lyme [disease] can last a lifetime if permanent damage has occurred before the diagnosis is made,“ says Gaito. "It’s hard to treat after a certain point because the bacteria move deeper into the body to places where antibiotics have a hard time reaching, like the brain and joint spaces.” Doctors try to treat the actual infection until patients plateau or no longer respond to antibiotics, at which point they use anti-inflammatory medication to deal with lasting symptoms like permanent joint damage, cognitive issues, and heart problems.

It sounds pretty scary, but there are ways to figure out if you’ve got Lyme disease before it really has its hooks in you—or even prevent it in the first place. Here’s what to look out for.

Related: Why Did It Take Doctors Months to Diagnose Avril Lavigne with Lyme Disease?

What Are The Symptoms?
Lyme disease symptoms generally fall into three camps: neurological, arthritic, and cardiac. “The most common symptoms patients have are fatigue, headache, joint pain, and heart palpitations,” says Gaito. “A lot of people have different variations of neurological Lyme disease, so they can’t think straight, experience memory loss, or even [have] psychological issues, like depression and anxiety.” The symptoms vary a lot from person to person, though. “One person may be tired and have headaches, while someone else might have it and feel great except for a swollen knee,” says Gaito. “There are a lot of different strains, so symptoms depend on what the tick was carrying when it bit you.”

According to the Centers for Disease Control and Prevention, 70 to 80 percent of people infected develop a bullseye-shaped rash three to 30 days after being bit. The rash is created when the tick bites, then secretes a chemical that thins your blood so it’s easier for the tick to feed (ick). That creates inflammation, which leads to the rash. But you could easily have Lyme disease and never get that exact rash. “There are so many manifestations of the rash itself because ticks have different levels of spirochetes, which are the bacteria that cause Lyme [disease],” says Gaito. If you do see a bulleye, it’s a major hint you might have Lyme disease, but you might also get something that looks more like hives or a spider bite.

How To Protect Yourself
While wearing long pants and socks make it harder for ticks to get access to your skin, those guidelines are hard to follow in the hot late-spring and summer months, when Lyme disease contraction rates are higher. Before you head into a wooded or grassy area, apply a natural tick repellent, says Gaito. If you don’t have any on hand, ticks don’t like lemon or lavender scents, so using a moisturizer or perfume with those is better than nothing. And if you’ve got long hair, make sure to tie it up and wear a hat. “It’s hard to check every inch of your scalp,” says Gaito.

Related: How To Avoid Ticks In The Woods

The real prevention comes when you get home. Check yourself for ticks, especially in the warm, moist areas they love: behind your knees, your groin, and even underneath your breasts. “I’ve had women who go in for mammograms and see a spot that turned out to be a tick,” says Gaito. Even better than just looking for ticks is running your hands over those spots; deer ticks are often very tiny and easier to feel than see. “Right now, at the start of the season, they’re nymphs—babies,” says Gaito. “They’re like a little speck of dust, and they’re not always black. Females have an almost reddish-orange color to them.”

Sometimes a tick will bite you, then hitch a ride to your home, where it will fall off in your bed or shower. If that happens, or if you find a tick on yourself, you can put it in a baggy and take it to a doctor. He or she can send it off to get tested and put you on medicine as a preventative strategy.

While Lyme disease can mask itself through its wide-ranging symptoms, you don’t need to worry that you have it every time your head starts pounding. “If you have multiple symptoms for seven to 10 days, you should include a Lyme disease test in the evaluation of that problem,” says Gaito. This is especially true if you’ve been taking some sort of medication for your symptoms but they still haven’t gotten better. After you raise your concerns, your doctor will likely give you a blood test to detect an antibody reaction to Lyme-related proteins called antigens. The doctor will also watch out for things like anemia and Lyme-induced inflammation in your blood stream.

Related: This Inspiring Woman Refused to Let Lyme Disease Stop Her From Making it to the Olympic Games

If you suspect you have Lyme disease, make sure to ask how up-to-date the office’s testing system is. “People are told, ‘No, you don’t have it, we don’t know what’s wrong with you,’ but sometimes that’s based on Lyme technology from 1982 that has 55 percent accuracy,” says Gaito. “Women are often told it’s menopause, PMS, or depression.” If you get that kind of brush-off but still feel something may be wrong, get a second opinion. “The earlier you get treated for Lyme disease, the better,” says Gaito.

By Zahra Barnes