Lyme Disease

Nearly twenty years ago, my mother began having symptoms not unlike arthritis. She had always been a lover of nature and chose to be in her garden, always walking around barefoot as much as she could. First, her joints began to ache. But not just in one area, in her entire body. Then came the fatigue, then the neurological disorders and brain fog. She was tested several times for Lyme using the titer blood test. These tests are often used when there are no nervous system issues and are more affordable for insurance companies. They also tend to have a high rate of false negatives. When my mom’s symptoms didn’t improve, and only after they did a battery of other tests showing an enormous jump in her inflammatory rate, her rheumatologist finally prescribed a CSF/serum antibody test. And there it was. She was positive. This entire process took three years to figure out; she now had chronic Lyme disease (she was treated with antibiotics for months through a port), but she also had irreversible damage to her joints, brain, and heart. 

As someone who spends ample time on trails in the woods and in the prairies, I have picked off hundreds of ticks. I’m perhaps overly aware and concerned, but for me, it is worth the risks; however, I do not go out blind. Last year, a trail-building friend contracted Lyme twice in one season and had to go on heavy doses of antibiotics because symptoms weren’t improving, and he was showing connective tissue degeneration and pain. How I view it is this could be any one of us.

I wanted to take time to go over the basics, but also get into the nitty-gritty of Lyme disease, since I’m lucky enough to be friends with Jonathan Patz, former head of the Global Health Institute at UW Madison, and a professor of environmental medicine who specializes in tick- and mosquito-borne illnesses. First, what is Lyme disease? The CDC classifies it as a bacterial infection spread through the bite of a black-legged tick (also known as a deer tick). It’s most common in the Northeast (where it was first discovered), mid-Atlantic, and upper Midwest. The hot zones are changing rapidly; however, Patz says, and climate-change models show it is about to move into the deciduous areas of Canada soon.

Signs and Symptoms

Most know about the bullseye rash, often associated with the early stages (within 3-30 days of infection), but this rash appears in only 20-30% of cases. EM, or erythema migrans, is much more common in 70-80% of cases. According to Johns Hopkins University and the CDC, other symptoms associated with Lyme are plentiful and often difficult to nail down. Early symptoms include feeling flu-like, fatigue, malaise, headaches, muscle or joint soreness, swollen lymph nodes, and a sore throat. Later symptoms, if left untreated, are: additional rashes on other body parts, severe headaches, facial palsy, arthritis, connective tissue issues, heart palpitations, dizziness, inflammation of the brain, and nerve pain. Let’s just say, you don’t want this disease.

Prevention is key!

So, how do you prevent Lyme if you want to play in the woods and prairies? Or even your backyard (yes, Lyme can be contracted in mowed yards)? Prevention is key! It may look dorky to do a few of these things, but it’s much gentler than contracting Lyme. First, know that ticks like to get onto humans in three ways. Crawling up onto you from the ground and waiting patiently on foliage (or your pet), with legs outstretched to grab ahold of you. Occasionally, they will drop from overhanging foliage, but this is much less common. If you have pets, they can also drop off your critters, then search for a warm being that does not have preventative medications (us). When I’m in known tick country, I wear white or light-colored socks and spray DEET around my ankles. If I’m wearing pants, I’ll tuck them into my socks. Because ticks like to climb upwards, the DEET ring is a great defense, and the light-colored socks help you spot the little buggers before they go further. Because I don’t like applying deet to my skin, I’ll also spray a bandana and wrap it around my neck (to detour them from embedding themselves in my scalp) or spray my shirt. Just make sure you don’t spray nylons or anything waterproof since DEET can damage those materials. Ticks, by nature, love dark and warm spots—think between toes, belly buttons, behind ears, and scalps. If you find an embedded deer tick, you have time, but not much of it. The FDA states we have a 36-48 window before the disease is transferred, but Dr. Katz, a Lyme expert, says we may only have a 24-hour window. 

Since deer ticks are so small, it’s smart to do double checks. If found, the best removal method is to use fine-tipped tweezers, grasp as close to the head as possible, and slowly pull upward. Follow with cleansing the areas with rubbing alcohol or soap. If the head or mouth parts remain, try to remove them with the tweezers, or let your skin flush them out naturally. Do not crush the tick between your fingers. This can spread Lyme into open skin.

Not Lyme, but equally not as fun

Another tick to be on the lookout for, as it makes its way into the Midwest, is the Lone Star tick. “This tick transmits ehrlichiosis and causes Alpha-gal syndrome, which shows up as a red meat allergy”, Patz said. Although it’s still sporadic, case numbers are on the rise.

Upcoming hope

For those at high risk of contracting Lyme, there is hope. Since the discontinuation of LYMErix in 2002, there hasn’t been a human vaccine…but that’s about to change. Pfizer and Valneva are in phase three clinical trials, and the vaccine could be released within the next couple of years. This vaccine will need a booster not long after the first dose, then again, a year later, but it is looking very promising. Patz is hopeful for this vaccine to hit the market because “Lyme is the most prevalent vector-borne disease in the US and it causes substantial morbidity in the American population”, he said. For those, like me, who have witnessed the devastating effects and still do trail work, I will be one of the first in line to get this shot. Until then, you’ll see me with pants tucked into socks or in the parking lot looking over my limbs.