Lifespan Lyme Disease Center enrolling RI adults to learn more about ongoing symptoms

Health

PROVIDENCE, R.I. (WPRI) — If you have a suspected or recently confirmed case of Lyme disease, researchers in Rhode Island are hoping you consider joining a new, international clinical research study.

The Lifespan Lyme Disease Center at The Miriam Hospital is currently enrolling adults in hopes of helping them learn more about the condition, which the U.S. Centers for Disease Control and Prevention (CDC) says affected more than 500 Rhode Islanders in 2019.

Dr. Jennie Johnson, an infectious disease specialist who serves as director of the center, says it is enrolling patients in a Lyme disease trial in hopes of finding better diagnostics and testing for the condition.

The Lifespan Lyme Disease Center is a multidisciplinary center entirely dedicated to the treatment of Lyme disease and other tick-borne illnesses.

“We actually have a lot of experience with post-infectious syndromes, namely in Rhode Island, Lyme disease and the Post-Treatment Lyme Disease Syndrome (PTLDS) that we see in people,” Johnson said.

Johnson says people with PTLDS have had their infection treated and cured, but still have ongoing symptoms, including pain, fatigue, exercise intolerance, or difficulty thinking that lasts for more than six months after they finish treatment. 

“Right now, the vast majority of our tests for Lyme disease only tell us that people have had Lyme disease or been exposed to the bacteria and made antibodies,” Johnson said.

“That can be challenging if people get Lyme again, and it doesn’t really tell us also, if people when people have had Lyme disease, you treat them, whether or not they’ve completely cleared the infection,” Johnson continued.

Johnson says the center is currently looking for anybody who has active, acute Lyme disease.

“So they’ve gotten it within the past few weeks, either in the form of like a bull’s eye rash or facial droop that we see called Bell’s Palsy,” Johnson said.

Long term, the disease can also have impacts on the joints, heart, and nervous system.

Johnson says just a handful of people have enrolled so far, with the difficulty of the study being that researchers need to find people in a “sweet spot window” of infection.

“They have to have just been diagnosed with Lyme disease, have a clinical syndrome consistent with Lyme, and then get them in before they’ve had more than two days of antibiotics, which is a very narrow window,” Johnson said.

“The problem is if they have been diagnosed and have been on antibiotics more than that, then it actually interferes with some of the testing that we are trying to do in terms of antibody development and actually finding the bacteria in their body,” she continued.

Additionally, participants have to be 18 or older and not have had a previous Lyme disease vaccination in order to be considered.

Johnson says depending on enrollment, the clinical research trial will likely enroll patients through October.

The Miriam Hospital’s clinic is one of two New England sites taking part in the international study, which includes sites in the United States, Canada and Europe.

For more information or questions regarding the Lyme study, you’re asked to call (401) 793-4317 or email jshin@lifespan.org.

The center is also currently conducting a Phase 2 Lyme vaccine trial involving teenagers.

According to the CDC, 95% of Lyme disease cases were reported from 14 states in 2015: Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, and Wisconsin.

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