Pinellas County resident Alyssa Kobernick shook with fear when she received the call – her brother’s face was paralyzed.
She was prepared to get on a plane and fly home in a panic as the doctors told her they didn’t know what was happening.
After a stressful battle and some serious doubt, it turned out to be Lyme disease.
Cases such as those of Kobernick’s brother are not that unusual.
Lyme disease, an ailment associated with the Northeast, is one of the fastest-growing infectious diseases in the country, and the Florida Department of Health considers Florida endemic for Lyme disease.
“The current disease statistics do not come close to estimating the true incidence and prevalence,” said Dr. Kerry Clark, professor of Epidemiology and Environmental Health at the University of North Florida.
The disease is a bacterial infection transmitted by ticks. It can also be passed through pregnancy and sexual activity.
If untreated, the infection can worsen. It can invade any bodily tissue or organs, leading to neurological infestations, heart problems and joint issues.
Nobody knows the precise number of Lyme cases in Florida, Clark said. He believes it has been present in the southeastern United States longer than it has in the northeast. Lyme isn’t growing, awareness is simply rising.
“Lyme bacteria have likely been present here for thousands, maybe millions, of years,” he said. “There is more genetic diversity in Lyme Borrelia strains in the south, indicating a longer evolution time down here.”
Clark attributes the higher rate of cases in Pinellas to ecological factors that produce higher tick density.
Florida is humid year-round, leading to tick activity throughout the year. Deer, raccoons, mice, rats and any smaller mammal can carry ticks that can transmit Lyme Disease.
With the continuing suburbanization of the state, people are finding those animals right in their backyards.
The Pinellas County Medical Association recommends consulting with a physician to find the appropriate treatment, said Stacie League, executive office manager at the association.
Often, that treatment will follow CDC guidelines to use antibiotics such as doxycycline or amoxicillin, she said. Those recommendations come from the 2006 guidelines for treatment developed by the Infectious Diseases Society of America.
However, Florida Lyme Disease Association President Melissa Bell said standard tests and treatments for Lyme are not effective.
The tests miss half of actual cases because they only look for a single strain of Lyme that is prevalent in the northeast, and Florida has divergent strains.
Lyme is difficult to test for, she explained. The tests look for an immune response to bacteria, because the bacteria itself is difficult to culture. Those who test too early don’t give their bodies enough time to create an antibody response. Lyme is also known to cause immune suppression, so those who test too late may not respond.
Bell said many doctors believe that Lyme is rare in Florida. If a patient has not traveled outside of the state, doctors rarely test for it.
“We also hear many cases where the patients are testing even CDC positive, and they’re still dismissing the test as a false positive because they claim that we do not have Lyme disease in the state,” she said.
Until recently, there was only one standard of care for Lyme based on the notion that it is easy to diagnose and cure with short courses of oral antibiotics.
However, absolute cure is usually not possible for most patients using current treatments, Clark said. Many patients experience immune suppression, leading to additional infections.
“I acquired Lyme disease in 2010 from tick bites while conducting field studies in Fayette County, Georgia,” Clark said. “Despite multiple rounds of antibiotic treatment, I continue to experience symptoms of the infection.”
Bell said the International Lyme and Associated Diseases Society looks to an individual approach to treatment. They consider patient response, length of infection, number of co-infections and state of immune health.
“Unfortunately, the Infectious Diseases Society of America takes a one-size-fits-all approach,” she said. “Insurance companies have put their full weight behind those guidelines. They’re not cured and better within the two weeks, and most patients end up paying out of pocket for treatment.”
It is difficult to push for different treatment because that requires going against the guidelines of national associations, Bell said.
“As a parent and as an individual, I was taught to trust that approach and unfortunately, that approach completely failed my family and so many others,” Bell said.
She declined to comment further on her personal experience, but said it is important to help those still suffering.
“They’re in excruciating pain and nausea, and they can’t tolerate treatment so they’re not getting better,” she said. “It’s something that deeply moves you.”
Lyme is hard to identity because the symptoms are not specific. Early symptoms include a tick bite, fatigue and headaches. The most classic sign is known as a bullseye rash, but atypical rashes are more common.
Clark said awareness is key. He recommends daily tick checks, especially when engaged in outdoor activities or in heavily wooded areas.
Ticks not only carry Lyme, but also a cocktail of parasitic bacterial and viral infections, so it is important to remove them quickly. He said that pets can increase our risk of contact with ticks.
Residents can also treat their lawns for ticks, Bell said. She recommended putting clothes in the dryer for 30 minutes to kill any ticks, as well as promptly showering. People can also use different tick repellents for clothing, gear and skin.
Citizens should know how to properly remove a tick to save it for testing. She recommends using fine-tipped tweezers as close to the skin as possible and pulling straight up.
“Unfortunately, many parents or citizens don’t recognize how dangerous ticks can be,” she said. “It’s not just going in the deep woods where you can be infected.”
The Florida Lyme Disease Association is working to spread awareness, Bell said.
“It’s a great way to bridge the gap,” she said. “We’re informing doctors so they can inform their patients of the proper precautions and to be looking for it beyond somebody that has an acute tick bite or rash.”
She said one of the biggest problems is a lack of research.
“People are absolutely debilitated by these symptoms,” Bell said. “Let’s take a new, fresh approach and fund researchers that have open minds.”