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Lyme disease defies easy diagnosis, long-term treatments
Fairfax woman searched for diagnosis; 5K Saturday to raise awareness of ‘horrible’ disease
FAIRFAX — Getting Lyme disease changed Courtney Hoffman’s life.
Before the diagnosis, Hoffman said she was happy with her life. She was a teacher, had a vibrant social life, was able to support her kids in their activities and was active in her community. After starting to show symptoms in 2002, she began experiencing memory loss and chronic exhaustion.
Hoffman, of Fairfax, described her diagnosis process as a “litany of misdiagnoses,” where doctors from across the United States tried and failed to find out what was causing her symptoms. With symptoms ranging from depression and anxiety to migraines and allergies, Hoffman said none of the treatments helped.
Ultimately, Hoffman quit her job to see if lessening stress would help. It didn’t.
“I just — I couldn't function,” she said. “I couldn't be a good teacher, and I couldn't be a good mom.”
When a friend mentioned her symptoms sounded like Lyme disease, an illness transmitted by deer ticks, Hoffman brushed the idea aside, saying she never had the bull’s-eye rash that often accompanies the tick bite.
But after getting tested by a Lyme disease specialist in Missouri, her results from the Centers for Disease Control and Prevention came back positive. Despite finally getting a diagnosis, Hoffman said she had to try several treatment plans in several states due to lack of specialists in Iowa before finally finding an option that worked in 2021.
“It's been horrible. It's like the worst thing you can imagine because nobody knows what it is,” Hoffman said. “They don't understand it, and they don't know how to help you.”
While treatment has allowed for her to regain some of her old life back — including spending time with her grandchildren and working as a respite care provider — there are still areas of her life that will forever be changed.
Hoffman said she has to follow a strict diet, continue with lymphatic massages for her muscles, meet with a doctor in Waterloo every few months and has bouts of low energy.
“I’m thankful for every single day I wake up,” she said. “I never take anything for granted anymore.”
Lyme disease in Iowa
In 2021, the latest data released by the state, 356 cases of Lyme disease were reported in Iowa. That number has been increasing most years, according to the Iowa Public Health Tracking Portal.
Because of the nature of Lyme disease, the infection is investigated at the state level, according to Jennifer Miller, disease prevention specialist at Johnson County Public Health. It is considered an “endemic” in Iowa, meaning it occurs regularly in an area.
Unreleased data from 2022 provided by Miller shows 162 cases were reported, considerably below the 2021 total. So far this year, Miller said, 25 cases have been reported but it’s before the peak transmission season when people are outdoors.
“The kind of land that we have, it's conducive,” Miller said. “That just does put us at a higher risk.”
Quick facts on Lyme disease
What is Lyme disease?
Lyme disease is the most common vector-borne disease in the United States, with about 30,000 cases reported every year.
How is Lyme disease spread?
The bacteria that causes the Lyme disease infection is transmitted through the bites of infected ticks. Typically, a tick must be attached for 36 to 48 hours for the bacteria to be transmitted. Though less common, untreated Lyme disease can also be transmitted during pregnancy.
What are the symptoms?
Early symptoms include fever, chills, headache, fatigue and a rash. Later signs and symptoms include facial palsy, spreading rashes, arthritis, swollen knees, pain across the body and dizziness. While most people associate a bull’s-eye rash with Lyme disease, many never develop a rash.
How do you recognize Lyme disease?
A tick bite does not necessarily mean Lyme disease has been transmitted. If the early symptoms of Lyme disease develop, the best course of action is to seek medical attention to confirm. Because of its vast variety of symptoms, Lyme disease can be difficult to diagnose.
How can you prevent Lyme disease?
Strategies include using insect repellent, employing certain clothing treatments and avoiding spaces where ticks live. Check clothing and your body after showering. Examine pets for ticks after they’ve been outside.
Source: Centers for Disease Control and Prevention and Lyme Warrior
Raising awareness
Tina Rosekrans, the deputy city clerk and treasurer for the city of Fairfax, said she first became aware of Lyme disease and its accompanying problems through a friend. She wanted to raise awareness.
“All of this really breaks your heart when you listen to it — how horrible this disease actually is,” Rosekrans said. “It doesn't get recognized enough.”
For the past several months, Rosekrans and several volunteers have been planning a 5K race where participants can walk or run to raise money and awareness for Lyme disease. The 5K starts at 8 a.m. Saturday at Fairfax City Hall. There is an alternate 1K route.
Hoffman met Rosekrans and is acting as the “spokesgirl” for the event.
If you go
What: Lyme disease 5K
When: 8 a.m. Saturday
Where: Fairfax City Hall, 300 80th St. Court, Fairfax
Registration: People can register through Facebook or in-person the morning of the event
Cost: $25
The 5K is raising money for an organization named Lyme Warrior, a nonprofit run by individuals with Lyme disease who advocate for education and support events across the United States.
Lyme Warrior sent Rosekrans the steps to help in organizing a 5K, as well as other resources to give out at the event.
Paying for treatment
While the initial round of antibiotics to treat Lyme disease may be covered by insurance, long-term symptoms and subsequent treatments are not.
Hoffman said the financial burden caused by Lyme disease was part of the reason it took so long to find a treatment plan that worked for her. With a limited money that could be budgeted for treatment, she had to do a lot of research herself.
Sharon Ibanez, the community engagement and events director with Lyme Warrior, said treatment for Lyme disease can cost thousands of dollars every year. Ibanez said treatment for her and her two daughters annually costs around $15,000.
“I was searching for grants because treatment is very expensive, and we earn a very limited income,” Ibanez said.
Ibanez said Lyme Warrior looks to fight for patients to get better, more accessible treatment. While the various programs are costly, Ibanez said finding a program that works for individuals can streamline that process and mitigate costs.
“Our goal is to help educate and create resources for other Lyme patients so that hopefully, we can help cut their treatment journey to a much shorter time than ours has been,” Ibanez said. “You can't force everybody to listen, but we're going to try.”
Comments: jami.martin-trainor@thegazette.com
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