Jill Magee didn't realize how serious her illness was about a year ago, when she came down with flu-like symptoms: fever, aches and pains.
She said she let things go on for a month or two before she ended up going to the doctor where she learned she had Lyme disease.
Even with relatively quick intervention, Magee said, the disease \ took its toll on her. She developed Bell's Palsy, a form of temporary partial facial paralysis, according to the National Institute of Neurological Disorders and Stroke.
She also dealt with exhaustion and "brain fog," or impaired mental functioning.
Magee said she didn't tell many people about her struggles, partly she said, because she was so exhausted. Once she started sharing her story with others, they began telling her their Lyme disease stories.
One person she connected with was Kathy Allen. Allen went undiagnosed for years. She said she likely first came down with the disease in 2007. She was diagnosed in 2012.
"It took me about five years, after many doctors and many tests," she said.
She said many doctors told her that her symptoms were all in her head, or that they were symptoms of something other than Lyme disease.
Since her diagnosis, it has been a very long road to recovery, Allen said. She still hasn't recovered fully.
At one point, she moved to San Diego to be with her sister, who helped take care of her.
Allen said the disease affected her neurological system. She said she was very confused. She dealt with severe anxiety, migraines, pain all over her body. She still deals with severe headaches, has strong sensitivity to chemicals, and has dealt with severe digestive issues.
Both Magee and Allen said they're on the road to recovery, but they're not quite there yet. They also said they want to spread community awareness of Lyme disease. Especially as tick season is beginning.
Lyme disease is a bacterial infection spread by deer ticks and deer tick nymphs (the stage between larvae and adult), according to Dr. Rita Raverty, a family health physician with Allina Health River Falls Clinic.
"The first stage of the disease is typically a flu-like illness, where people will have headaches, body aches, fever, joint pain," Raverty said. "Just feel like they're sick with the flu."
Along with that, a rash shaped like a bullseye often forms around the tick bite.
"That typically presents anywhere between three and 20 days after the bite from an infected tick," Raverty said.
But, she said, not everyone who gets Lyme disease will get the bullseye rash.
People will often present other symptoms, such as joint pain, inflammation, or an infected joint.
"That can happen anywhere from a few weeks to several months after the tick bite," she said.
Less common symptoms, which can happen months or years after the tick bite, can be cardiac or neurological problems, Reverty said.
"So it can affect the heart or the nervous system," she said. "All of those stages of the disease are treatable with antibiotics, but the durations of treatment depends on how the disease presents."
Raverty said some people have reported Lyme disease causing fatigue and body aches for up to a year after having the disease. Though symptoms may last a long time, Raverty said, they aren't forever.
"There's no good evidence that Lyme disease, when adequately treated, causes permanent damage to the heart or the nervous system," Raverty said.
In extremely rare cases, Raverty said, Lyme disease can cause death by cardiac arrest or encephalitis (infection of the brain). She said she has never personally seen either of these.
Raverty said primary care doctors generally see several cases of Lyme disease each month during the spring, summer and fall months.
"It is not uncommon at all," she said. "And we live in some of the areas that have the highest rates of Lyme disease in the country."
Lyme disease is diagnosed by a blood test.
"The bacteria's very difficult to see in the blood," Raverty said. "We look for the body's immune response to the bacteria."
False negatives are always possible with any blood test, Raverty said. But, she said, these days doctors use sensitive and accurate tests.
Raverty said the initial symptoms of Lyme disease are often mistaken, at first, for a bad cold or flu.
She recommends people see their primary care doctor if they develop flu-like symptoms and there's a chance they could have been exposed to deer ticks. For example, she said, if it's summer when ticks are active and someone develops flu-like symptoms, it's a good time to go get checked out by a doctor.
Raverty recommends people wear clothing that covers the skin to prevent ticks attaching and use insect repellent. After going out in long grass or a wooded area, she advises people to check their entire bodies for ticks thoroughly. She also recommends people look up the difference between deer ticks, which carry Lyme disease, and wood ticks, which do not.
"We certainly want to encourage people to be outside, and to be physically active and to take advantage of parks and nature," Raverty said. "But those are also places that you'll be potentially exposed to ticks."
Deer ticks are found outside, and are commonly carried by mice and other animals. They are very small. According to the Lyme Disease Association, adults are the size of sesame seeds, and nymphs the size of poppy seeds.
Allen and Magee are planning a Lyme Disease Awareness Walk for Saturday, May 18. Registration is at 9 a.m., and the walk is at 9:45 a.m. The walk is sponsored by Magee's and Allen's businesses, Take Action Performance and St. Croix Valley Concierge Service. The walk is open to those who have had Lyme disease, those who know someone who has had it, and anyone who is interested in Lyme disease awareness and prevention.
Allen and Magee are asking those who join the walk to wear green.
May is Lyme Disease Awareness month, and Allen said, this is one of many walks that will take place worldwide.
The goal is simply to spread awareness, Magee said.
"We're trying to get people together, not to dwell in the pain," she said, "But to ... work toward a better future."
For more information, contact Allen at 715-821-0894.