In 2016, Wendy Phillips was getting married. She also thought she was dying.
“I was sleeping 16, 17 hours a day,” she says. “I started developing heart palpitations, seizure-like activity, neuropathy. I went to the ER nine times for these different symptoms. I was just searching, trying to figure out what was wrong with me.”
Phillips first noticed a strange set of persistent symptoms three years previously when she was a seemingly healthy FGCU student studying biology. It began with memory loss and fatigue.
She graduated with her bachelor’s in biology in 2014 and moved on to graduate school at California State University-Long Beach to study biochemistry. When she moved across the country, the strange symptoms moved with her. During the next two years, Phillips dealt with rage, back pain and obsessive-compulsive thoughts.
By the time she was 26, Phillips had been sick for four years. She’d seen cardiologists, rheumatologists, neurologists, allergists and more. No one could tell her what was wrong. Family members and doctors suggested it could be tied to anxiety.
Finally, in 2017, a nurse told Phillips about a patient she’d seen the year before with similar symptoms. That patient had been diagnosed with Lyme disease, a tick-borne illness. The nurse referred Phillips to Boynton Beach physician Jody Greenfield, who started Phillips on antibiotics before her blood test came back because of the severity of her symptoms. When the results did return, Phillips was diagnosed with Lyme disease.
When people and animals are bitten by a deer tick carrying a certain bacterium, they can develop Lyme disease. While it’s more commonly found in the Northeast than in Florida, Greenfield says the Centers for Disease Control and Prevention is finding ticks carrying the bacterium in more and more states. Greenfield frequently treats patients who have traveled from other parts of the country or who work with pets.
“I had two patients who were dog groomers and the dogs came from different parts of the country,” he said. “Ticks were on the dog, crawled onto them, gave it to them and then they got pretty ill.”
One of the aspects that Greenfield says makes Lyme disease hard to diagnose is that infected people can exhibit a wide variety of symptoms, which might not appear immediately after the tick bite. “Some people can get symptoms the next day, some people can get symptoms a year later,” Greenfield says. “It’s important that people are aware of it. It’s becoming more prevalent in the country.”
In Phillips’ case, she recalls brushing ticks off her legs while visiting Vermont in 2011 – two years before she noticed symptoms.
“With ticks, you have to brush up against them,” Greenfield says. “They don’t fly, they don’t fall out of trees, they’re usually in tall grass or leaf litter. Ticks are tiny, so you may not see them.”
He says the best ways to prevent tick bites are to avoid being in wooded areas, to spray your body with insect repellent containing DEET if you will be in the woods, and to check for ticks on your skin after coming indoors.
A decade after her own tick bites, Phillips uses her story to help others recovering from Lyme disease.
“It was such a battle,” Phillips says. “A year into treatment I started to feel better and I thought, ‘Oh my gosh, what if I couldn’t have afforded to see a Lyme disease specialist?’”
In 2019 she launched and became executive director of the Lyme Treatment Foundation, a volunteer-run nonprofit organization that helps patients in the United States, Canada, the United Kingdom and Germany pay for Lyme-disease testing and treatments. Since its launch, the foundation has awarded more than $175,000 in grants to people with Lyme disease and related tick-borne illnesses. Individual grants have been awarded up to $4,000.
“We’ve had more than 600 applications,” Phillips says.
The foundation has also partnered with two diagnostic labs that offer discounted testing to grant recipients.
Phillips is excited to be funding a research project that was slated to start in October in England at The University of Oxford in collaboration with The University of Leicester. The project title is “New pharmacological agents to treat persistent infections.”
The former biology student says she never imagined being on the funding side — rather than the research side — of a project like this one.
“I always thought I was going to work for a pharmaceutical company and do clinical trials, but I guess you never know what you’re going to be doing,” Phillips says. Although she’s not using biology in the way she imagined when studying at FGCU, Phillips says that her science education gave her a strong foundation to understand the research and medical conversations she has at the foundation.
The foundation has given Phillips experiences she never expected to have, such as meeting with representatives of Florida senators Rick Scott and Marco Rubio to discuss increasing federal funding for Lyme disease.
She has also partnered with a celebrity who publicly overcame Lyme disease, pop singer Avril Lavigne. The Avril Lavigne Foundation provides some of the donations that fund the Lyme Treatment Foundation’s grants. In October 2020, Phillips recorded a video to be played during Avril Lavigne’s live streamed concert supporting the Avril Lavigne Foundation.
“It wasn’t in-person, but it was really amazing,” Phillips said, adding that speaking at events usually sparks an increase in donations to the foundation, which is supported by small businesses and individual contributions. “The work is never-ending for fundraising,” Phillips says. “We just want to fundraise as much as possible so we can help more people.”
For more information, visit lymetreatmentfoundation.org.
—Nina Barbero is a 2015 graduate of FGCU who majored in business and minored in journalism and lives in Fort Myers.