Student shares battle with Lyme disease as tick season begins in Maryland

Spring marks the start of tick season in Maryland, which has some of the highest cases of Lyme disease in the nation.

It's the most prevalent tick-borne disease in the state, according to the Maryland Department of Health. Lyme disease is primarily caused by the bacterium Borrelia burgdorferi, which is transmitted to humans through the bite of an infected blacklegged tick.

In the early stages of Lyme disease, flu-like symptoms appear, but if left untreated, it can affect the joints, heart, and nervous system.

JHU student shares journey with Lyme disease

Johns Hopkins University sophomore Kristen Johansson is studying molecular and cellular biology. Like most students at the prestigious university, she takes her education seriously, but unlike most 20-year-olds, she's spent half of her life in and out of hospitals and doctors' offices.

She contracted Lyme disease at a New Jersey summer camp when she was 11 years old, before going into sixth grade, but it took until eighth grade to get diagnosed.  

"I was told it was headaches, migraines, everything was kind of unexplainable and as a preteen girl, you get told things are anxiety or growing pains," said Johansson.

Her health quickly deteriorated. It started out as vague neurologic symptoms, and once co-infections came into play, things got worse, with seizures and daily migraines.

Johansson developed CIDP, a rare autoimmune disorder where the body's immune system attacks the myelin sheaths around nerve cells in the peripheral nervous system and she lost her ability to walk. She developed aphasia and had difficulty producing speech and lost her ability to read.

At one of her lowest points, doctors sent her home from the hospital with no answers.

"I walked out of the hospital, and I couldn't even make it to the elevator," she explained. "My mom was helping me walk, and we had to stop about 10 steps outside of the door, and I was just like debilitated."

This was during the COVID-19 pandemic, hospitals were overwhelmed, and she worried answers would never come.

"I was in a lot of pain, and I had been in a lot of pain for a long time, and in no way did I want to die, but I was totally accepting of it," she said. "And, you know, like I wanted help, but I knew that they couldn't help me there."

Johansson had gone to over 30 doctors before a specialist diagnosed her with Lyme disease, and she began immunotherapy.

"I went in for two-day infusions, sat in a chair for 12 hours a day in New York City every three weeks during my freshman year of high school and that changed my life," she said. "Within two months, I was journaling and coloring and doing all the things I like to do."

She was able to go to school, talk with her friends and hang out with them. She said she couldn't go to the gym or run, but she could walk around the block again and that felt amazing.

"It's not necessarily that it treated anything, but it definitely gave my body a chance to heal itself, and calmed everything down and then other treatments followed," said Johansson.

Eventually, her body couldn't tolerate the drugs and that's when she turned to Johns Hopkins research on the benefits of plant-based products.

"Just seeing that work in real time for me was really life-changing and definitely is why I ended up going to Hopkins," she said.

Johansson's immune system has not fully recovered. Today, she takes over 30 supplements a day, does multiple injections and drinks multiple liquid supplements. While she's still recovering, she serves as an advocate for Lyme disease organizations.

Lyme disease research and advocacy

Nicole Baumgarth's lab at Johns Hopkins conducts Lyme disease research and says it's a serious public health concern.

"It's not an illness that can be taken lightly," said Baumgarth, director of the Lyme and Tickborne Diseases Research and Education Institute at Johns Hopkins University. "These long, ongoing symptoms can really change a person's life."

Last year Johansson faced her once debilitating disease. She saw the organism that made her sick, Borrelia burgdorferi, up close under a microscope in Baumgarth's lab.

"I felt like this sense of power that, you know, like that thing was taking away so much of my life, but it didn't take away my life, and now I'm like looking over it, and it's trapped in a dish under me," she said.

To fight back against Lyme disease, Baumgarth says continued research and collaboration are needed.

"We can solve this. This is not an unsolvable problem. It's a very complex problem, and this is why it hasn't been solved yet," said Baumgarth.

Johansson wants to be a part of the solution.

"So many people are where I was when I was 12, and they are stuck in a hospital, or they are bed-bound… So how I handle that is through continuing, learning, continuing, educating myself, trying to be involved in these organizations and hoping to one day like contribute to the research or medicine that helps people also get out of this issue on the other end," said Johansson.

The future of Lyme disease

Right now, there is no vaccine to prevent Lyme disease, but a promising first-ever clinical trial for a vaccine for humans is underway at the MaineHealth Institute for Research.

Lyme disease is the most common and fastest-growing vector-borne disease in the United States.

"So these [vector-borne diseases] are all diseases caused by small critters, so mosquitoes, sand flies and so on," she said. "Ticks cause over 90% of all vector-borne diseases, yet until very recently, we haven't really paid any attention to it."

As for future research, some lawmakers are pushing to renew the Kay Hagan Tick Act. It expired last year and provided $30 million annually to address vector-borne diseases.

The new bill would extend federal funding through 2030. A date has not yet been scheduled for a full vote in the Senate.

Preventing Lyme disease

In Maryland, Lyme disease cases have nearly doubled since 2020, according to the latest data from the Maryland Department of Health.

Beginning in April, Marylanders should be on alert for ticks – with peak periods being May/June and September/October, according to Baumgarth.

The Maryland Department of Health shared the following tips to prevent tick exposure and bites: 

• Use EPA-approved insect repellents
• Wear light colored clothing to help spot ticks
• Wear long pants and sleeves and tuck your pants into your socks or boots
• Stick to marked paths when hiking and perform tick checks. 

Find more tips to prevent Lyme disease here. 

A telltale sign of Lyme disease is finding a bullseye rash – a red circle on your skin – around the site of a tick bite.

However, not everyone develops the rash, and it can appear different on people with darker skin, according to Baumgarth.

Lyme disease can bring about flu-like symptoms, headaches, fever and chills.

It's important to consult with a doctor and mention that you were just out in areas where there were ticks.

Antibiotics are very effective when given early in a diagnosis, according to Baumgarth.