Gina Costa hadn't even known she was bitten by a tick.
It was 2013 when the bubbly Maryland native began noticing changes in her health - along with a deep-seated intuition that something was seriously wrong.
"I just remember feeling like I was 90 years old," Costa says. "I was in my 30s and suffering from exhaustion, muscle issues, inflammation in my joints, heart palpitations and even mixing up my words."
Yet, standard bloodwork tests and lab results from Costa's primary care physician showed normal results.
Costa, a mom of three, continued to receive physical therapy treatment for her joint and muscle problems while pushing through her other debilitating symptoms, but she was no closer to answers until a visit to an orthopaedic surgeon. There, clinicians noticed severe inflammation in her joints, and decided to test her for a slew of conditions, including rheumatoid arthritis and Lyme disease.
Three weeks later, Costa learned she tested positive for Lyme disease. It had taken almost one year since she began experiencing symptoms to receive the diagnosis.
Lyme disease is a common tick-borne infection with multisystem inflammation caused by bacteria called borrelia burgdorferi. Symptoms of Lyme disease include fever and fatigue and, in more advanced stages, joint pain, brain fog or neurological difficulties. In its earliest stage, Lyme disease can also present with a rash known as erythema migrans at the site of a tick bite, which can have varying appearances and often be mistaken for a bug or spider bite.
Ticks are most active during warmer months. During this time, experts advise wearing long pants and long sleeves outdoors and spraying this clothing with permethrin (a natural derivative that repels ticks); avoiding high-risk areas, including long grass and dense forest areas entirely; taking a shower after being outdoors and performing a tick check; and contacting your doctor immediately if you have been bitten by a tick or develop a rash from a bite.
Following her Lyme disease diagnosis, Costa was quickly referred to John Aucott, M.D., associate professor of medicine at the Johns Hopkins University School of Medicine and director of the Johns Hopkins Lyme Disease Clinical Research Center.
"Gina's case illustrates some of the big challenges with Lyme disease, as it's pretty typical that patients' symptoms of the disease go unnoticed," says Aucott. "In situations like this, you have to listen to the patient and take their concerns seriously - you need to pursue tests and subtle findings to lead to a diagnosis."
Under Aucott's care, Costa began the standard course of antibiotic treatment for Lyme disease in 2014, and finally experienced some relief from her symptoms of late-stage Lyme disease. Costa also agreed to participate in phase I of the Study of Lyme Immunology and Clinical Events (SLICE) study, partially funded by the National Institutes of Health. Led by Aucott, SLICE phase I would follow Costa for two years, monitoring her progress with Lyme disease.
"The work we do here requires a long-term investment to help our research collaborators around the world and patients like Gina," says Aucott. "Not too long ago, folks didn't believe in such a thing as post-treatment Lyme disease, which can be similar to chronic illnesses like long COVID or myalgic encephalomyelitis/chronic fatigue syndrome. With many shared symptoms, these illnesses may share common biological mechanisms. By studying Lyme disease, we may be able to understand other illnesses that affect millions of people."
While Costa was participating in the SLICE study, she unfortunately experienced a flare-up of her Lyme disease, indicating that she was part of a subset of patients who have received treatment for Lyme disease but still show symptoms. When symptoms last longer than six months and impair daily functioning, the condition is called post-treatment Lyme disease, or PTLD. Phase I of the SLICE study, using data from Costa and other patients with PTLD, found that 14% of patients with Lyme disease will develop PTLD.
Nearly a decade later, Costa manages her PTLD by implementing healthy lifestyle habits, and she seeks out supportive resources to help with diet, exercise and stress. Costa also says "leaning into my faith and surrounding myself with people who lift and inspire me is a huge part of my healing story."
