Florida Lyme disease patients say they asked 12 times for a test

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JACKSONVILLE, Fla. — Schools may be out for summer break, but we are now in tick season. As your family spends more time in the fresh air, it's important to know how to avoid the disease-carrying arachnids.

At the University of North Florida, researchers are working to create a more sensitive test for Lyme disease, a disease that is transmitted through ticks. Needing a more sensitive test and getting doctors to give a Lyme disease test in the first place, are just some of the problems people with Lyme disease say they face.

"It was March 3, 2011," said Melissa Bell. "He came home from school, I know the exact day because it was a traumatic day, saying, 'I don't know what's wrong, I'm falling down at P.E.' And then an A+ student started having problems with short term memory, C's, D's, F's, started losing the ability to walk."

Bell's son was 11 years old when he started showing symptoms of Lyme disease, but no one knew what it was. Bell, who is now the president of the Florida Lyme Disease Association, says it took nearly a year of advocating for her son to get a diagnosis.

"We probably asked for Lyme testing a dozen times," Bell said. "It shouldn't be that hard to have children tested for Lyme disease."

Becqi Sherman says she has experienced the same issue as an adult. She says she went to about a dozen doctors and specialists and Lyme disease was never suggested as a possibility for her symptoms.

"I was in the back of an ambulance on my way to the emergency room with what I thought maybe was a stroke or heart attack, didn't know," Sherman said.

She says she wasn't believed.

"'No, this isn't anxiety,'" Sherman said. "Something is really, really going wrong and I can't seem to get out. I can't seem to get anybody to believe me."

First Coast News talked with Kerry Clark in his lab at UNF where he studies ticks.

"It's one of the most difficult diseases to diagnose," Clark said about Lyme disease. "Unfortunately, it's not hard to get and so a lot of people who actually have Lyme will go undiagnosed because of poor awareness, because of lack of sensitivity of the diagnostic tests."

Clark says official disease statistics underestimate the number of people with Lyme disease because they go by a very strict definition. The Centers for Disease Control and Prevention data shows five cases of Lyme disease in Duval County in 2020 and zero cases in most of Georgia.

Clark says tests are not sensitive enough and it's something he's working to change.

"If you get a negative Lyme test, it doesn't prove that you don't have the infection," Clark said.

Bell says to keep pushing for a sensitive test if you believe your symptoms may be Lyme disease.

"Be the advocate that your child needs," said Bell.

Clark says the best way to repel ticks is to use a repellent that contains permethrin, which is an insecticide. According to the CDC, you must be careful to not get it on your skin and only spray it on your clothes then let them dry.

Clark says to tuck your shirt into your pants and tuck your pants into your socks when you're outside some place like on a hike. Remember, pets can bring ticks inside.

"It's always a good idea to save the ticks and to maybe take a record of where the tick was attached and what the date was," said Clark. "Look for any unusual rashes or be aware of any other types of symptoms that might indicate some type of infection."

The range of symptoms is one of the reasons Lyme disease is so difficult to diagnose. Sherman describes the following symptoms: mental confusion, tunnel vision, dizziness, inability to walk, numbness in her limbs and face, feeling like she is wearing earmuffs, feeling as if she is being strangled, random muscle pain and heart palpitations.

"One of the main problems with Lyme disease is it gets misdiagnosed as other conditions and especially in the chronic stages," said Clark. "So, patients will have things like headaches, fever, severe fatigue, muscle pain, joint pain, brain fog and other cognitive issues and it often gets misdiagnosed as fibromyalgia, chronic fatigue syndrome, sometimes even multiple sclerosis and other conditions."

Bell advises you to follow the Florida Lyme Disease Association on Facebook and visit their website. Sheman advises joining Facebook groups for support and help finding 'Lyme-literate doctors.'

You can also find resources at Project Lyme here. Clark says you can contact his lab for sensitive testing. Find his contact information here.

See information from the CDC on how to remove ticks and prevent them here.