The patch of poison ivy on my face itched like crazy as I led a gaggle of third-graders to the pool for swimming lessons. Poison ivy was basically an occupational hazard, seeing as the three-leaved plants were abundant in the shallow woods where I regularly took my campers hiking. So when a red, spotted rash appeared on my hip a few days later, I figured it was just more poison ivy to cover in calamine lotion and resist scratching. But as the week went on, the spotted rash spread to my stomach and across my other hip.
With a growing portion of my torso covered in splotches, it seemed like time to see a doctor. At an urgent care clinic near the summer camp, a doctor prescribed a cream for some sort of fungus she said I picked up in the woods. She was partially right: My rash did come from the woods, but it wasn’t fungal. I had Lyme disease, courtesy of a tiny vampire tick that had latched onto my hip and bitten me without my knowing it.
I only ended up with the correct diagnosis because my mom tagged along at my appointment. Her own case of Lyme had gone undiagnosed for months, partially because her own oddly shaped rash looked nothing like the textbook “bullseye” Lyme rash. She insisted the doctor test my blood. Call it mother’s intuition. Or just pure luck. Regardless, her hunch was spot on.
“There is nothing else in the world that causes that rash; nothing else in the entire universe except the Lyme bacteria.”
That’s not always how things go after people contract Lyme. While about 30,000 cases of Lyme disease are reported annually, the actual number of people infected each year is projected to be around 300,000, according to the Centers for Disease Control and Prevention. In other words, the vast majority of Lyme remains undiagnosed.
Infections are also on the rise across the country. The prevalence of tick-borne illness more than doubled between 2004 and 2016 — from 22,000 to 48,000 cases, per the CDC. Lyme disease accounted for 82 percent of those cases. As Erica Lehman, a tick-borne disease medical specialist in Beverly Hills, California, puts it: “Lyme disease is the fastest growing epidemic in the world.”
Experts say insufficient knowledge about the disease is a factor in its stealthy spread. To effectively manage Lyme, it’s important to get the facts straight. Here are four common misconceptions about this tick-borne bacterial illness.
Misconception: If you contract Lyme, you’ll develop a bullseye rash.
The truth: There’s no guarantee of that particular rash showing up. And without the bullseye, other Lyme symptoms can be hard to piece together.
The CDC describes the classic bullseye rash as a “circular red rash with a central clearing that slowly expands.” Many people (doctors included) learn to recognize it as the signature mark of Lyme.
“There is nothing else in the world that causes that rash,” Lehman said; “nothing else in the entire universe except the Lyme bacteria. If you do get the [bullseye] rash, you have it. You have been infected.”
On the other hand, fewer than half of Lyme patients develop the bullseye rash, according to the Global Lyme Alliance. Some people don’t get any rash at all, while others, like me, develop rashes that don’t look like a bullseye.
Lyme-related rashes (bullseye or not) are also temporary, lasting only a few days, and often show up in hard-to-see places. For me, the rash on my stomach was impossible to miss. But ticks tend to seek out moist, warm parts of the body, like the space behind the ear, the bend of the knee, the groin and the hairline. Someone could easily develop a rash they never notice. And if they don’t know they had a rash in the first place, they won’t report it to a doctor, potentially interfering with a timely, accurate diagnosis.
Aside from the bullseye rash, early Lyme symptoms are also symptoms of many other ailments. For instance, I assumed my knees were achy from playing with kids all day, and that my lymph nodes were swollen because I’d been battling a sore throat. Then there was the abnormal, unyielding exhaustion. It was a level of tiredness I’d never felt before and which no number of naps or extra-long nights of sleep could get rid of. They were all Lyme-related.
Other early Lyme symptoms include fever, chills and headaches. However, over time, someone infected with Lyme can develop a number of more serious symptoms, including facial palsy, inflammation of the brain and spinal cord, and short-term memory loss.
Misconception: Blood tests can resolve any uncertainty surrounding a Lyme diagnosis.
The truth: Lyme disease is complicated to diagnose and blood tests aren’t always reliable.
Even when someone who’s exhibiting multiple Lyme symptoms sees a doctor for help, a correct diagnosis can be hard to come by. Not all primary care physicians are knowledgeable about the disease. On top of that, the blood tests used to diagnose Lyme aren’t perfect.
The CDC recommends a two-tiered Lyme testing process that measures your antibody response to the infection but not the infection itself. “That means we have to rely on your body to recognize the infection and develop the antibodies,” said Daniel Cameron, a Lyme disease expert in Mount Kisco, New York.
The first step is a screening test, the enzyme-linked immunosorbent assay (ELISA), which is supposed to be highly sensitive to Lyme antibodies. If ELISA comes back negative, no further testing is recommended. If the result is positive (or even inconclusive), a Western Blot test (of which there are two types) is performed to confirm a Lyme diagnosis.
But the two-tiered system isn’t a sure bet. By some estimates, it misses almost half of Lyme infections. False negative results are particularly likely during the first four to six weeks after Lyme is contracted, as some people are slower to mount an antibody response that’s strong enough to register on a blood test.
Misconception: It only takes one round of antibiotics to clear up Lyme disease.
The truth: Antibiotics are the recommended first-line treatment for Lyme, but fully treating the disease can be a complicated process.
The National Institute of Allergy and Infectious Diseases says Lyme disease should clear up after a single course of an antibiotic such as doxycycline or amoxicillin. While a few weeks of meds did the trick for me, about 10 percent of Lyme patients continue to experience symptoms after taking antibiotics, an issue called post-Lyme disease syndrome. Symptoms of PLDS include fatigue, difficulty sleeping, arthralgia (pain where two or more bones meet), myalgia (muscle soreness and aching), memory impairment and headaches.
If a patient still exhibits symptoms after taking antibiotics, a handful of other factors might be at play, including possible coinfections or simply not taking a long enough course of antibiotics.
“It’s a very complex disease,” said Dorothy Leland, vice president and director of communications for LymeDisease.org, a national patient advocacy organization. “The biggest misconception is that two to four weeks of antibiotics will fix you,” she said. “There are some people that seems to work for, but there are a whole lot of people that it doesn’t.”
Misconception: People primarily get tick bites in wooded areas during the summer.
The truth: You can pick up Lyme all year round, all over the country.
Tick bites should absolutely be top of mind when you’re forest-bathing in July. But even when you’re trapped in the city and shorts weather is a distant memory, you should still be aware of Lyme symptoms.
In recent years, Lyme disease has shown up in geographic areas previously considered relatively safe from tick-borne disease. As Quest Diagnostics reported last year, people are now testing positive for Lyme in all 50 states. The majority of cases do still occur in New England and the mid-Atlantic region, with Maine, Vermont and Pennsylvania topping the list of most-infected states. However, Lyme is now also common in Wisconsin, Minnesota, Oregon and other states in the Great Lakes and Pacific coastal regions.
“A tick,” said Lehman, “is nature’s dirty needle.”
Two species of ticks are known to carry Lyme, and you don’t need to wade into the woods to come into contact with either kind. The blacklegged tick, also commonly known as the deer tick, is mainly found in the eastern half of the country; while the western blacklegged tick is native to the West Coast.
These stealthy arachnids can also survive in freezing temperatures. Come winter, ticks hide in leaves or brush. Snowfall provides insulation, enabling dormant ticks to live through the season. Additionally, ticks can latch onto animal hosts, such as mice, moose, deer and domestic pets, which helps them both get through the winter and travel far and wide distances.
If you think there’s a chance you have a tick bite, don’t hold out for the bullseye. Check in with a doctor as soon as possible and keep track of any and all symptoms.