When Jackie Dube found circular rashes with bullseye points on her stomach, she went to the hospital. Doctors told her she had an allergic reaction to flea bites.
A year later, she became seriously ill. Flu-like symptoms and chronic joint pain would continue on and off for years until she’d eventually be diagnosed with Lyme disease. More than a decade after her misdiagnosis, the 37-year-old Pinellas Park resident says she suffers "flair ups" from Lyme disease annually.
"In the beginning, doctors told me it was psychosomatic, that all of this was in my head," Dube said. "After years of hearing that, but dealing with my eyes swollen shut, a dislocated jaw and shoulder, fistulas in my thighs, I was finally tested for Lyme and was positive."
Dube is one of a growing number of Floridians who suffer from Lyme disease, part of a nationwide increase that has researchers stumped.
Historically concentrated in New England, the disease has mostly been a seasonal issue in warmer months when ticks are prevalent in wooded areas. But data collected by Quest Diagnostics, a national clinical laboratory, found increasing Lyme disease cases in all 50 states, with a significant rise in places like California and Florida. Until recently, those two large states have never been associated with high rates of the disease.
"As things get warmer, one would think that the ticks would migrate more north, to Canada, not necessarily to Florida," said Dr. Harvey Kaufman, senior medical director at Quest. "We’re seeing a rise in cases in Canada and in Florida, but with Florida we’ve got to think of a reason other than climate change."
While the number of diagnoses in Florida is comparatively small, the steep increase in cases has triggered some concern. Last year, according to Quest, 501 cases of Lyme disease were reported in the state — triple the number five years ago and a spike of 77 percent since 2015.
About 30,000 cases nationwide are documented each year by the Centers For Disease Control and Prevention, but the agency admits many go unreported.
In 2015, researchers from Johns Hopkins estimated that Lyme disease costs the U.S. health care system up to $1.3 billion a year.
"The CDC has some older data that shows that the blacklegged tick is spreading into more parts of the U.S., so that’s likely one explanation for the rise," Kaufman said. "But Lyme disease has really taken off in the last several years. There is generally more awareness of Lyme disease in places like Florida where you see ticks year-round because there’s no winter freezing."
In Florida, most people live in suburban areas where they are more exposed to wooded and brushy terrain where ticks live, said Dr. Gautam Kalyatanda, an assistant professor at the University of Florida’s division of infectious diseases and global health. Ticks have more small animals like rabbits and squirrels to feed off of, now that their natural predators, like foxes and coyotes, are less prevalent to keep those populations in check, he said.
"For a long time we thought Lyme doesn’t happen in Florida. We’d see patients with tick bites linked to other diseases," Kalyatanda said. "But now we’re seeing more of Lyme."
Lyme is caused by bacteria carried in ticks that get it by feeding on an infected animal such as a rodent. The disease is transmitted to humans through the bites of infected ticks. Symptoms usually include fever, headache, fatigue and a characteristic skin rash called "erythema migrans", according to the CDC.
Physicians can confirm the disease through a two-tier blood test. Kalyatanda said that the test isn’t foolproof, and early detection of Lyme disease can still be a challenge for physicians.
"We have diagnostic tests approved by the CDC, but there can be false-negative results," he said. "It’s not uncommon for Lyme to be misdiagnosed. We don’t have a test that is extremely efficient for testing early contraction of the disease."
Lyme disease is treated and most of the time cured with antibiotics, if diagnosed quickly. "There are some patients that after being treated, still have symptoms of fatigue. But that’s a small population of the diagnosed," Kalyatanda said."
It’s the cases like Dube’s, which are misdiagnosed or diagnosed too late, that can lead post-treatment Lyme disease syndrome, which has more severe and often life-long consequences.
Dube said she found compassion in growing online support groups, where thousands of people share stories like hers.
"There are a lot of people like me who went through hell and have all these issues and complications," she said. "The general population knows someone who has gone through Lyme disease now. That awareness is helping, but so often it’s still being missed."
Amanda Hackett, 30, has spent the last 13 weeks at a clinic in Clearwater being treated for Lyme disease.
She doesn’t remember contracting it because she never had a visible rash. But she said she could have been bitten by a tick while studying abroad in Austria in 2009, or even earlier, when she worked at a summer camp in upstate New York for 10 years.
"New York is loaded with ticks, so it could have happened anywhere. Maybe even more than once," Hackett said. "About a month after I got back (from Austria) I started feeling really sick, and never really got better."
Over the years, doctors thought she had Swine Flu, ovarian cysts, urinary tract infections and migraines. She vomited regularly the first year and then years later, lost the feeling in her feet.
"It was always something. And there would always be someone to have some explanation that usually boiled down to me being a woman," said Hackett, who lives in Syracuse, N.Y. "But I could never figure out why this was happening out of nowhere."
Her trip to the Clearwater clinic comes years after being treated with antibiotics and probiotics, among other remedies that never had a lasting effect. She’s being treated with ozone and vitamin IVs and an ozone sauna now, as well as Pulsed Electromagnetic Field Therapy for inflammation. She said she feels much better.
"I had been sick and untreated for so long that I had reached an ‘autoimmune’ level where antibiotics weren’t able to help me," she said. "This disease goes so far beyond just being bit by a tick and getting treated properly."
She said it’s important for people who have loved ones with Lyme disease to realize it’s something they can’t control and can affect their moods.
"People with Lyme are living with it wrecking havoc on their entire life," Hackett said. "They’re just trying to do their best with a disease that no one, nor the public, really understands."
Contact Justine Griffin at [email protected] or (727) 893-8467. Follow @SunBizGriffin.