In May of 2002, my daughter was bitten by a tick.

The tick was an adult-stage female black-legged tick. It was attached to her for less than 12 hours. Although she was examined by her doctor, the bite was dismissed as a health concern. We were told that since the tick was attached for less than 36 hours and wasn’t the “right” kind of tick – it was an adult, not a nymph tick – she was at low risk for Lyme disease. She was advised to go home, and if a rash, fever, or flu-like symptoms occurred, to return for an antibiotic treatment.

No rash appeared at the site of the tick bite. She didn’t develop a fever or flu-like symptoms. Months passed, and the tick bite went untreated.

After setting college records for swimming and making All-American her freshman year in college, my daughter came home for a long weekend. On her first night home, she had a fever and complained of aches and pains. By the next morning, her symptoms had escalated. Over the next several weeks, she suffered with searing headaches, a heart arrhythmia, overwhelming fatigue, and sensations like electricity running up and down her arms and legs and making her muscles feel like they were on fire (her words). The left side of her body went numb.

Her physician and the specialists we took her to were clueless. One even suggested that her symptoms were somehow related to her being “a girl.” We had to request the test for Lyme disease, since not one doctor she saw even considered that a tick-borne disease could be the root cause of her illness.

Lyme disease is caused by a remarkably insidious microbe named Borrelia. This bacterium, a spirochete like the one that causes syphilis, has the ability to disrupt the immune response and stealthily travel through blood vessels to infect tissues surrounding the joints, the heart, and the nervous system, resulting in symptoms that occur in stages. Diagnosis is difficult, because the features of the illness are often non-specific. The supposed hallmark of the disease, a rash shaped like a bulls-eye, only occurs in a minority of patients. The only recognized test for Lyme disease is highly inaccurate as a diagnostic tool.

Every year, more than 300,000 people are bitten by ticks and develop Lyme disease. Only a fraction are promptly diagnosed and treated. Despite medical and public health assertions that “most” patients with Lyme disease recover fully, the reality is that many do not. As my daughter’s case illustrates, the longer the time between diagnosis and first treatment, the more likely that symptoms will become persistent and disabling.

My family’s journey, from tick bite to diagnosis, treatment, and resolution of my daughter’s symptoms, was long and difficult. We were marginalized by a medical system overly invested in a narrow, outdated medical perspective that hasn’t changed in over 30 years, despite newer science showing that the disease is far more complex than previously thought. We had to navigate an insurance system unwilling to reimburse for treatment of a disease that didn’t fit the outdated definition. We had to find ways to pay for the treatments that ultimately returned my daughter to a functional state. And we had to consider what the future held for all of us should my daughter remain disabled. All as a result of an infectious disease.

As a microbiologist and educator, I’m now working to help others navigate the difficult terrain of Lyme disease, through public education on the risks of ticks and tick-borne disease, advising on research to develop new and accurate diagnostic tests, and by advocating for policy change on the state and federal levels to improve access to care for Lyme disease patients. These policy changes have included the formation of the Department of Health & Human Services (HHS) Tick-Borne Disease Working Group (TBDWG) in 2018 to review the science and identify research gaps, as well as the legislation that, in 2016, added funding for tick-borne disease research to the Congressionally Directed Medical Research Programs.

The inclusion of Consumer Reviewers for the TBDRP grant program is a unique opportunity, since grant review for most federal funding agencies (such as the National Institutes of Health) does not invite the perspective of stakeholders. Serving as a Consumer Reviewer has allowed me to advocate for scientific research that will improve patients’ access to care through the development of accurate diagnostic tests, a better understanding of the biological basis for persistent symptoms of Lyme disease, and discovery of novel therapeutic approaches to improve quality of life.