After her son was born, though, her symptoms were worse than ever. She happened to be watching public television when a special aired about a new disease identified in Lyme, CT. The screen flashed an image of the rash Franklin had had some months earlier. “There was my rash,” she says. “I knew what was wrong with me.”
She ended up contacting one of the researchers in the Lyme special who suggested she try a 3-week course of an IV antibiotic. Her doctor, finally convinced, agreed to the plan, and her insurance even covered the medication. “I got back on my feet,” she says. “I still had some body pain, but I had my energy back.”
A stroke of bad luck led to a second bout of Lyme in 2008. “I was putting out tick repellent and stepped one foot into the woods right on the edge of our property,” Franklin says. The tick, which she later found, must have jumped at that exact moment.
Franklin, now 64, is one of the 300,000 or so people thought to be infected with Lyme disease every year in the US, according to the CDC. Luckily, not every tick bite leads to the disease, but it’s understandably the first thing we think about in that panicked moment of finding a bugger happily sucking away at our ankles or beneath our waistbands. Despite how far we’ve come from the lack of understanding of Lyme when Franklin was first infected, there’s a lot we still don’t know—and a lot that remains highly contested—about the disease.
To help give more patients answers, advocacy group LymeDisease.orgrecently launched an interactive checklist of common Lyme characteristics. Checklist users can match up their experiences and symptoms with common Lyme scenarios, then print the results and bring them to a doctor if they seem to confirm their suspicions. But before you even get that far, here are a few things you should know about the tick-borne illness.
You can only get Lyme disease from a tick.
In other words, you’re not going to catch it from a family pet who has been traipsing around in the backyard. However, Fido and Fluffy can bring ticks into the home, who can then in turn feast on your flesh. (You also can’t pass it to your hubby or kids, unless you’re currently pregnant, although with antibiotic treatment there are no effects on the fetus, according to the CDC.)
There’s even a specific type of tick to blame, too: On the east coast and in the midwest, Lyme is spread by the deer tick, otherwise known as the blacklegged tick; on the west coast, the western blacklegged tick (creative, we know). Either kind bites then transmits the bacterium that causes Lyme disease.
Just about every state harbors Lyme-spreading ticks.
Lyme disease cases are concentrated in the northeast, particularly in woodsy, grassy parts of Connecticut, as you can see in this dire map. In 2014, the most recent year with data available from the CDC, 96% of all confirmed Lyme disease cases were concentrated in just 14 states. But there were only five states total that didn’t report a single case that same year—Colorado, Hawaii, Louisiana, New Mexico, and Oklahoma.
In January, research published in the Journal of Medical Entomologyreported that the ticks responsible for spreading Lyme are now found in 1,531 of the 3,110 counties in the continental US, a 44.7% increase from 1998, the last time such data was collected. “I think there may still be a lingering misconception that it’s hard to catch and easy to cure,” Franklin says. Don’t assume it can’t happen to you—avoid woodsy areas and tall grass, stick to the center of your favorite hiking trails, and check your clothing and body thoroughly after returning home.
You can remove the tick before it infects you.
Here’s a seriously skeevy thought: A tick has to stay attached to you for 36 to 48 hours before it can transmit its Lyme-causing bacterium. Shudder. The good news is that means if you’re able to remove the tick within 24 hours or so, you won’t have had the chance of infection. All it takes is a clean pair of tweezers to pull the tick firmly upward and off your skin.
Of course, it’s possible you won’t see the tick to begin with—they’re tiny after all, about the size of a sesame seed. That’s why that thorough check is so crucial. Then you’ll probably want to head to your doctor, says Samuel M. Shor, MD, president of the International Lyme and Associated Diseases Society (ILADS), to see if you should consider prophylactic treatment.
Not everyone gets that bulls-eye rash.
It’s considered sort of a hallmark symptom, and yet it’s possible as many as 50% of people don’t ever get the rash, Shor says. And some people simply may not notice the rash, like if it’s on their scalp, behind their ears, or around the groin, he says. But perhaps different strains of Lyme don’t elicit the rash, he says, or something about the particular tick could prevent its formation.
Getting a diagnosis can be frustratingly difficult.
Diagnosing Lyme often relies on acknowledging a host of signs and symptoms that could overlap with countless other health concerns, including headaches, neck stiffness, joint pain, muscle aches, dizziness, numbness, and memory problems. Depending on the day of the week (sounds like a case of the Mondays to us!), you might not even think you’d need to see a doctor about some of those symptoms.
The available blood tests aren’t always accurate, either. They can, confusingly, result in both false positives and false negatives, which means patients aren’t always getting the treatment they need. The state of Maryland recently passed a law requiring health care providers to explain to patients the concerns about blood tests for Lyme disease; Virginia passed similar legislation, which Shor was involved in, in 2013. Because of that, Lyme researchers and advocates are on the hunt for a better tool, like Shor and his colleague’s research into a urine test that’s more sensitive than a blood test.
The standard treatment doesn’t work for everyone.
After the recommended course of antibiotics, which typically lasts 2 to 4 weeks, up to 20% of unlucky Lyme patients continue to have symptoms, whether it’s joint pain, fatigue, or muscle aches. Once referred to as “chronic Lyme disease,” the CDC now calls this poorly understood constellation of symptoms Post-Treatment Lyme Disease Syndrome, or PTLDS. “We’re constantly asking ourselves why this happens to some people and not others,” Shor says. Some people may have an already compromised immune system due to another health condition or other infections occurring at the same time, he says.
PTLDS—and its treatment—is controversial.
How to handle these lingering symptoms is a sensitive subject in the world of Lyme. When that standard treatment doesn’t work, some doctors suggest longterm antibiotic use, but groups like the Infectious Diseases Society of America and the CDC remain staunchly against this practice. ILADS, on the other hand, believes longterm Lyme is frequent, and treatment depends on what other infections or conditions a person might be dealing with at the same time, Shor says.
Although she’s improved dramatically, Franklin says she’s never quite been the same as before her first bout of Lyme. “I’ve had periods of time over the years when I’ve been overcome with exhaustion,” she says. Had she not been able to rely on the devoted staff of the business she started 23 years ago, she says she doesn’t think she’d be able to work. She describes the pervasive fatigue and draining muscle aches as akin to the flu. “You feel like you want to go lie down,” she says, but unlike the flu, the feeling doesn’t pass. “It’s like pushing a rock up a hill.”
She’s had to give up physical activities she once loved, like riding horses and ice skating. She won’t walk in the grass anymore. Even socializing has become difficult. “It’s just too exhausting,” she says.
She says she remains hopeful, now that it seems more and more researchers and physicians are starting to change the way they think about lingering Lyme-related symptoms. “I want to be well again,” she says. “I want people like me to get their health back.”