Photo by Erik Karits, Pixabay.

May 1, 2023

When Lyme Disease Hits Home–A Mercer County Family’s Fight for Their Daughter’s Health

May is National Lyme Disease Awareness Month. To illustrate the health impact of Lyme and the importance of tick bite prevention strategies, we’re highlighting one Mercer County family’s pursuit to help their daughter.

“It’s as if her legs had suddenly stopped working,” Mercer County resident Jennifer Russell said about the onset of a mysterious symptom her daughter Lauryn experienced in 2012 at the age of 7. “Lauryn came home from school, got off the bus, and couldn’t make it any further. She laid down in the driveway, and I had to pick her up and carry her inside.”

Lauryn’s Story

Jennifer Russell knew something serious was wrong with her usually energetic daughter, and this symptom was just the tip of the iceberg. Lauryn would soon develop severe fatigue, a low white blood cell count, ongoing fevers, and “lymph nodes that wouldn’t go down,” she recalled.

During the three years that followed, the Russell family was thrust into a complex medical maze, filled with twists and turns and few answers about what was making Lauryn ill. A virus, leukemia, and a connective tissue disorder called Ehlers-Danlos syndrome were a few of the diagnoses medical professionals had given Lauryn as she cycled in and out of local hospitals. They also removed her tonsils and adenoids, thinking they were contributing to an unidentifiable infection. But still, Lauryn remained ill, and the Russells watched as their daughter’s childhood slowly slipped away, and days in bed, profound fatigue, memory issues, and joint pain became her new normal.

One day, Lauryn developed three ring-like rashes under her armpit. Jennifer recognized the marks as bull’s-eye rashes, a hallmark symptom of Lyme disease transmitted from the bite of an infected tick. Not everyone who contracts Lyme gets a bull’s-eye rash (estimates range from about 30 percent to 80 percent), but Russell believed this new clue would offer them answers.

A girl holds up a printed certificate while standing in front of a bush in a mowed yard. A friendly basset hound stands next to her.
Photo courtesy of Jennifer Russell.

“I took Lauryn to several doctors, and they all denied that it could be Lyme disease because the bull’s-eye did not fit the profile,” she said.

But a month later, some additional confirmation came from an unlikely source—Charlie, the family’s floppy-eared, vocal Basset hound.

“He rolled over on his back for me to rub his belly, and there it was—an unmistakable bull’s-eye rash, identical to Lauryn’s,” Russell said. Within two days of the rash, Charlie began dragging his legs and crying in pain. The vet diagnosed him with Lyme disease and began treating him immediately. Jennifer also knew that she needed to further investigate the tick-borne disease as the cause behind her daughter’s symptoms, and she took this new information to her pediatrician.

For Lauryn, however, the road to recovery wouldn’t be a swift one after her Lyme disease diagnosis; her symptoms had become persistent and debilitating.

“She was undiagnosed for three years and was in treatment with various doctors for four years to try to get her life back,” Russell said. “Bitten by a little tick that no one even thought to test for, even though, looking back, all the signs were there. It was a long, hard struggle.”

Now 17 years old, Lauryn is symptom-free from Lyme, a high school honor roll student, and a gifted guitarist in church praise band. Despite her harrowing battle with the illness, she doesn’t shy away from the outdoor hobbies she loves. She hunts for mushrooms with her mother, turkeys with her grandmother, and deer with her dad and grandfather. But these days, the entire family takes significant preventative measures to avoid future tick bites and tick-borne diseases, and they have a message for other outdoor enthusiasts: Do the same—take ticks seriously and protect yourself.

Tick-Borne Disease in Illinois

Two hunters in blaze orange gear stand against evergreen branches. In the background is a mowed grassy area and an agricultural field.
Photo courtesy of Jennifer Russell.

Approximately 476,000 people contract Lyme disease each year, according to the Centers for Disease Control and Prevention (CDC). And like many parts of the Midwest, Illinois is experiencing a boom in the tick population and disease-causing pathogens. At the beginning of 2023, surveillance data for blacklegged (deer) ticks from counties, such as Winnebago and Jo Daviess, placed the number of infected ticks as high as 66 percent and 60 percent, respectively, according to the Illinois Department of Public Health (IDPH), with several other counties showing about one-third to one-half of the tick population infected with Lyme.

Beyond Lyme, other tick-borne diseases are also on the rise: tick-borne relapsing fever (TBRF), Rocky Mountain spotted fever (RMSF), alpha-gal syndrome (AGS), ehrlichiosis, anaplasmosis and babesiosis are some of the more common tick-related illnesses impacting human health.

Whether your interests lie in hunting, fishing, hiking, bird watching, camping or other outdoor adventures, developing solid tick prevention strategies can go a long way to help you and your family stay safe and enjoy nature’s best this year.

6 Tick Prevention Tips

When Going Outdoors

Two bottles of inspect repellent stand against a wooden panel. The brand to the left is Off in an orange bottle and the brand of repellent to the right is Cutter Backwoods in a green bottle with an orange cap.
Photo by Tony Webster from Minneapolis, Minnesota, United States, CC BY 2.0, via Wikimedia Commons.
  1. Keep an Eye out for Tick Habitats. When doing outdoor activities, be on the lookout for wooded areas, overgrown brush, unkempt grass and leaf litter piles. These are the types of environments in which ticks live; you may even have some hospitable tick habitats in your yard. Additionally, pets can serve as suitable hosts for ticks, bringing you closer in proximity to various disease-causing pathogens.
  2. Spray Outdoor Clothing and Gear with Permethrin. Permethrin repels ticks as well as various insects. To ramp up your tick protection, pre-treat your clothing and gear with a product containing 0.5 percent permethrin, the CDC says. Use the product according to the instructions on the label; typically, permethrin-treated clothing and gear will last for several washes. Note that permethrin shouldn’t be sprayed near cats. When wet, it can cause toxicity and neurological symptoms, so keep them away until the product has dried completely. You can also buy clothing and gear already treated with permethrin.
  3. Don’t Forget the Insect Repellent. Using insect repellent on your skin adds another layer of protection. But which ones should you choose? The Environmental Protection Agency (EPA) recommends products containing DEET, picaridin, IR3535, Oil of Lemon Eucalyptus (OLE), para-menthane-diol (PMD) or 2-undecanone. Avoid using products containing OLE or PMD on children under 3 years of age, the CDC cautions.

When Returning Indoors

A stainless steel clothes washer and dryer set are installed in the corner of a room. The door to the dryer is open, and a gray garment is hanging halfway out of the door.
Photo by Steve Buissinne, Pixabay.
  1. Put Clothes in the Dryer on High Heat. Before you step into your house, double-check to make sure you don’t have ticks crawling on your clothes, gear or pets—all convenient vehicles for them to hitch a ride inside with you. If you find one, promptly remove it. Then, place your clothing in the dryer on high heat for at least 10 minutes to kill ticks. If you need to launder your clothes, the CDC recommends washing them in hot water; ticks can survive cold and medium water temperatures.
  2. Shower Within Two Hours of Coming Indoors. Taking a shower within two hours of coming indoors may reduce your risk of contracting Lyme disease and other tick-borne diseases, according to the CDC. That’s because showering can help wash off straggler ticks before they have a chance to become attached.
  3. Perform Tick Checks. Check your body from head to toe, including the scalp and hairline, armpits, inside and outside of the ears, around the waist and belly button, between the legs and behind the knees. If necessary, use a handheld mirror to improve your visibility.

How to Remove a Tick

If you find an attached tick, don’t burn or smother it as this can increase the risk of the tick transmitting infection. Instead, do the following:

  1. With fine-tipped tweezers, grasp the tick as close to the skin as possible.
  2. Pull upward with firm, even pressure.
  3. If the mouthparts remain in the skin, see if you can pull them out. Avoid digging and ripping the skin.
  4. Clean the bite area.
  5. Keep the tick for testing. Place it in a sealable bag to send to a tick testing site (see below). Don’t crush it.
  6. Check the rest of your body for more ticks.

Tick testing for pathogens can be done at specialty labs such as IGeneX, Ticknology or TickReport for a fee. Tick testing is for informational purposes only and shouldn’t be used as a diagnostic tool. You can also send a sample or picture of your tick for free identification through the INHS Medical Entomology Lab in Champaign.

Watch for new symptoms, particularly flu-like ones, a bull’s-eye rash, muscle and joint pain, fatigue, fever, chills and headaches, especially in the summer months or if you’ve been near ticks. If you’re concerned you may have contracted Lyme disease from a tick bite, talk with a health care provider familiar with the signs, symptoms and treatment options. Finally, use National Lyme Disease Awareness Month as a reminder to kick off good tick prevention strategies so that you can enjoy an active, fun-filled summer.

Jenny Lelwica Buttaccio, OTR/L, is a Chicago-based health journalist and licensed occupational therapist. She lives with her husband and rescue dogs Emmi and Opal. When not writing, she can be found buried in a book, working out, or out in nature. Her work has been featured in HuffPo, Prevention, Men’s Health, Healthline and many other publications.

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Question: What is the treatment for long term Lyme disease. Bartonella is also part of my son’s illness