Check the bottom of this story for valuable links to local support groups and other Lyme disease help.
ORLANDO, Florida – When Carrie Perry takes "Roxy" out to play, she gets a rubdown with tick repellent.
There's no way Carrie wants to risk a tick inside her home.
That's because Perry's daughter Samantha had a three-year long battle with Lyme disease starting in December of her sophomore year.
"Three-day high fever, neck ache, head ache, but then it resolved."
But a few weeks later, Sam began feeling exhausted. The competitive athlete kept going, despite joint pain and nausea.
In about 70% of the cases, patients develop a bullseye-shaped rash. Sam had no rash, so Lyme was overlooked, for seven months.
Microbiologist Mollie Jewett says there's a window of time after a tick bite when infection is difficult to detect.
"As the infection persists longer and longer over time those bacteria can move from that tick bite site to different places in the body," explained Jewett, an Immunity and Pathogenesis professor at the University of Central Florida.
Lyme disease is caused by the bite of an infected black legged tick. The infection can be treated with antibiotics but unless it's caught early, it can cause serious, long-lasting side effects including like joint pain and fatigue.
Jewett and her team are researching how the bacteria evades the immune system.
They're developing a new diagnostic test of a patient's blood for the very early presence of the bacteria.
After Sam's diagnosis, she took antibiotics, but it was eight weeks of hyperbaric oxygen therapy that finally did the trick.
She's now a college junior studying abroad in Spain, recovered after years of agony.
"People don`t understand Lyme," said her mom, Carrie. "They don`t understand what one tick can do to a person."
CLOSER TO HOME HELP: A Quad City mother experienced the same problem when it took three years before her daughter was diagnosed with Lyme disease. Jennifer Russell is the founder of Spotlight on Lyme QCA. It holds family support groups each month in Moline and Aledo. Listen to our podcast with Jennifer Russell.
The Perry's say they spent $24,000 one year on Lyme disease treatments. That's on top of seeing doctors and specialists to get the diagnosis and ruling out several illnesses including Leukemia.
They've now created a non-profit group called Sam's Spoons to raise money for others who need Lyme treatment.
If this story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Jim Mertens at email@example.com or Marjorie Bekaert Thomas at firstname.lastname@example.org.