Lyme disease can be hard to diagnose, but it has the potential to cause lasting health effects — and it’s a growing problem in the US. According to the Centers for Disease Control and Prevention, Lyme disease is an illness caused by bacteria transmitted to humans through the bites of certain species of ticks, including deer ticks or “black-legged” ticks in the US (Ixodes scapularis).
Researchers are studying the growing spread of Lyme disease, which was traditionally a problem concentrated in the wooded Northeastern region of the US. Recent news and studies, however, show that Lyme disease is becoming a regional issue in the Midwest and in many other states, such as California, where disease-carrying ticks were found near beaches. Dr. James Marvel, an emergency medicine doctor at Stanford Health Care and wilderness medicine expert, is currently researching the contributing factors to the spread of Lyme disease in the US. He says that when looking at data from the US over the last few decades, Lyme disease has “blossomed” in a number of states and counties, particularly in the Northeastern US.
“There’s some suspicion that climate variables are contributing to it, especially in the context of global warming,” Marvel says, adding that the environment may be more favorable for ticks. However, ticks have a two-year life cycle, he says, which makes it difficult to track. “It’s not as simple as saying ‘one hot day means there’s going to be more ticks,'” he explains.
Other factors, like people expanding construction into wooded, tick-filled environments may also be contributing to a Lyme increase, Marvel says. Dr. Andres Bran, infectious disease specialist at the University of Missouri Health Care, says the pandemic may have led more people outdoors and caused them to engage in activities that would expose them to tick bites, such as hiking.
“You’re seeing a shift towards going out in order to be socially distant,” Bran says.
If caught early enough, Lyme disease can be easily treated, but failing to receive a proper diagnosis and treatment on time can lead to lasting illness. To better understand Lyme disease and how to stay safe outdoors, we talked to Bran and Marvel about best practices, including how to protect yourself, what to do if you find a tick and more.
Tick protection 101
Being outdoors increases your risk of coming into contact with all walks of nature, including ticks. But if you live in a wooded area or are out in nature a lot, and especially if you live in a state where Lyme disease is found, it’s important to protect yourself against tick bites.
“Ticks don’t fly or jump like fleas or anything,” Marvel says. “The only way they can get onto a human is through direct contact.” They do this by waiting at the edge of a blade of grass, tall reed or something similar, he says, and then latch on when something brushes against them.
Tick exposure can happen at any time, but ticks are most active in the spring and summer, or April to September, according to the CDC. To check yourself for ticks at the end of a day spent outdoors, the CDC recommends paying close attention to these places on your body: under your arms, your ears, your belly button, between your legs, your hair, your waist and the back of your knees. You should also inspect your pets and gear, as ticks can make it into your home by climbing onto a pet, backpack or clothing, the CDC says.
To stay out of reach of ticks, avoid areas with high grass or brush, stick to the center of trails and wear clothing that covers your skin as much as possible. You can also treat your clothes with permethrin, an insecticide, or use insect repellent. Bran says to apply the repellent every 4 to 6 hours, and find one that has a 30 to 35% concentration of DEET. The sprays with a lower concentration of DEET work, he says, but not as well. Bran also advises against sunscreen/insect repellent blends because they aren’t as effective.
“You should apply your sunscreen before the repellent, and then use whatever product you have available as a repellent,” he says.
What to do if you find a tick
Depending on the area, anywhere from less than 1% to more than 50% of ticks carry Lyme disease, according to Johns Hopkins Medicine. If you find a tick on your body, you should remove it.
Marvel says the best way to remove a tick is to use tweezers and “grasp the tick” as close to the base as possible, which is close to the tick’s head, then firmly “pull outwards with gentle traction.”
“People can keep the tick if they want, just for help with identification to see if it’s a species that could transmit Lyme disease,” Marvel says. “But it’s not recommended that we do routine testing of the tick for bacteria to guide treatment.”
Both Marvel and Bran say to contact your doctor if you find a tick and live in an area where Lyme disease is present. Bran says that if the tick bite happened within 72 hours of you finding it and treatment is started, the infection may be prevented.
How long does an infected tick need to be attached to pass on Lyme disease? Considering that many people may not know they have been bitten until they develop symptoms, that may be beside the point. But with a careful tick check, time may be on your side. Bran says the “magic number” of time that ticks need to be attached in order to cause infection is 36 to 48 hours.
“Anything less than 36 hours, we consider to be low-risk,” Bran says. “Not impossible, but very unlikely.”
Symptoms of Lyme disease
When infected by a Lyme-carrying tick, people have flu-like and non-specific symptoms, including headache, muscle aches, fatigue, fever, swollen lymph nodes and muscle aches, Bran says. Many patients — as many as 80%, per the CDC — will develop a rash about three to 30 days after an infected tick bite. The Erythema migrans rash associated with Lyme disease is most commonly known to look like a “bull’s eye,” with a red infected circle that clears as it spreads, but the rash may take on many shapes and forms, according to the CDC’s guidance on Lyme disease rashes.
“Something important to keep in mind is not all patients present with the characteristic rash,” Bran says. If you do have the rash, however, that’s considered a “home run” diagnosis, he says, and a dose of the antibiotic Doxycycline is used to treat the disease. “If you have the rash, you don’t need any expensive testing,” Bran added. “You need Doxycycline.”
Tests may be needed to determine whether or not someone has Lyme, including a blood test that detects antibodies for Lyme disease. The problem with that, Marvel says, is that antibodies can take a while to show up in a blood test — which also may contribute to underreported cases of Lyme disease.
“That can be tricky in acute cases, because it relies on antibodies in the bloodstream,” Marvel says. “And in the acute setting of that infection, in the first days to weeks, you haven’t generated antibodies yet.”
“Lyme disease as a whole is a tricky diagnosis,” Marvel added. The CDC reported almost 35,000 cases of confirmed Lyme disease in 2019. Research indicates that the real number of Lyme disease cases in the US is likely 10 times higher, according to Marvel.
“I think it gets trickier the further you get out from the original tick bite or potential exposure,” Marvel says.
If left undiagnosed, Lyme disease has consequences. “Acute Lyme disease presentation is the flu-like symptoms, but left untreated, it can progress and some of the complications would be Lyme encephalitis where it could actually affect the brain,” Marvel says. Joint and heart inflammation and facial paralysis are other symptoms of longer and more serious acute infection, he says.
Long-term Lyme disease
According to the CDC, most cases of Lyme disease can be cured within two to four weeks with antibiotics. Some people, however, may develop what the CDC calls “Post-Treatment Lyme Disease Syndrome” and experience pain, fatigue or difficulty thinking that lasts more than six months. The CDC says some experts believe the bacteria that causes Lyme disease can trigger an auto-immune response, resulting in symptoms that “last well after the infection itself is gone.”
Chronic Lyme Disease may be synonymous with PTLDS in terms of symptoms, but according to the National Institute of Allergy and Infectious Disease, “the lack of a clearly defined clinical definition” of CLD has led many experts in the field to avoid using that name altogether. But this doesn’t mean the experiences of people living with symptoms after Lyme disease aren’t real — in one study from 2013, 36% of patients diagnosed with Lyme at an early stage developed PTLDS symptoms.
The information contained in this article is for educational and informational purposes only and is not intended as health or medical advice. Always consult a physician or other qualified health provider regarding any questions you may have about a medical condition or health objectives.