It’s summer. You’re hiking, you’re camping, you’re living your best summer life.
So let’s talk about Lyme disease.
Lyme disease comes from a bacterial infection transmitted via the bite of certain ticks, most especially the black-legged tick aka the deer tick. It’s very common in North America and Europe’s summer months. Early signs of infection with Borrelia burgdorferi (the bacterium that causes Lyme) include fever, chills, headache, fatigue, muscle and joint pain, and swollen lymph nodes. About 4 in 5 people who get infected also get a characteristic rash that looks like a bullseye. However, the rash doesn’t *always* show up and can be hard to see on darker skin tones, so don’t rely on the rash as your only sign.
These early symptoms occur a few days after you’ve been bitten. If it’s not treated, this infection can progress to severe headaches, neck stiffness, joint pain, fatigue, irregular heartbeat, nerve pain, and numbness or tingling in the hands or feet. Sometimes these symptoms are debilitating.
In addition, some people continue to have symptoms–sometimes really severe symptoms–even after they’ve been treated. These can include pain, fatigue, and difficulty thinking or brain fog. Like Long COVID, no one really knows why some people get these chronic symptoms long after the infection has cleared up. There is no known effective treatment other than time. Most patients do feel better eventually, but it can take years and is definitely no picnic. Lots of infectious diseases cause long-term problems, including streptococcus, chlamydia, campylobacter, and others. This is not a well-understood area of medicine.
The best protection from Lyme is prevention. If you are going to be in tall grass or brush, wear protective clothing such as long pants tucked into your socks. From one outdoorsy girl to another, here’s my best advice: treat your clothing with permethrin, and DEET is the only topical product that actually works. [Edited to add based on reader comments: Picaridin is also an effective choice and won’t melt your gear.] I have a set of treated shoes, socks, pants, shirt, and hat that are my “foraging outfit.” And when you are done for the day, strip down and check yourself for ticks.
And protect your pets too! Dogs are very susceptible to ticks, and can get Lyme or bring ticks into your house where they might bite you! Your vet may recommend a long-acting tick preventative medication.
If you do get a tick on you or on your pet, remove it as soon as possible. It can take more than 24 hours for a tick to infect you with Lyme, so the sooner you get it out the better. Simply grasp it close to the skin with a pair of tweezers and pull straight up, firmly and slowly. Then apply an antiseptic to the bite area and monitor it for infection. Do not crush it, and don’t twist or jerk the tick out. Don’t apply heat or any kind of chemical substance to it (like petroleum jelly, nail polish, etc.). Save the tick for testing in case you develop symptoms later.
Unfortunately, there is no test for the bacterium itself. We use antibody tests, which look for signs that our own immune system has responded to the infection. The use of antibody tests has several practical implications. First, if you’ve been infected quite recently, you may not have antibodies yet. It can take as much as a few weeks to develop antibodies. So a test can come back negative even when you are actively infected. Second, antibody tests will remain positive for a long time after the infection has cleared, so there’s no good way to tell if you’ve been cured.
If you have good reason to think you’ve been infected with Lyme and your test comes back negative, you may need to advocate for yourself. Though CDC doesn’t recommend treating “just in case,” symptoms and a recent visit to an area with lots of ticks is enough to warrant treatment–even in the absence of a positive test. Awareness of Lyme has increased in the clinical community over the past few years thanks to a major campaign from the CDC, but there may still be some lag.
Lyme disease can be treated with a course of oral antibiotics such as doxycycline or amoxicillin. The earlier you are treated for Lyme disease, the better. CDC on Lyme Disease
There’s no vaccine for Lyme–any more. There was one, developed by GlaxoSmithKline, and it had good efficacy and a good safety profile during trials. FDA approved the vaccine and CDC recommended it. However, the manufacturer ceased production and it was voluntarily withdrawn from the market in 2002 because of low demand.
What happened? Anti-vaccine groups formed with the goal of ending the vaccine’s production. These groups promoted the idea–never supported–that the vaccine could cause arthritis. The media picked up on this idea, and there were several class action and individual lawsuits. And although CDC recommended the vaccine, they did not add it to the regular schedule of adult or childhood vaccines, leaving a lot of confusion about who should get it and some legal gray area which left the drug manufacturer financially vulnerable to lawsuits. It was a losing operation for them. So now there is no vaccine for Lyme.
The History of the Lyme Disease Vaccine
Our friends at @Unbiased recently did a handy chart and a couple of podcast episodes to help you identify different types of ticks and the diseases they might give you!
In the Lyme Light: Beyond The Tick Bite (Part One)
Chart of Types of Ticks and Diseases