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Twin Cities foundation applauds new effort to improve Lyme disease testing, treatment

Updated: January 19, 2020 11:13 PM

There is a multi-million dollar effort to improve testing, treatment and awareness for a fast-growing tick-borne illness.

Lyme disease and co-infections have affected several thousand Minnesotans and many others in Wisconsin over the past decade.

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U.S. Sen. Tina Smith of Minnesota co-sponsored a bill in Congress called the Tick Act. It was brought forward in honor of Sen. Kay Hagan, who died last October from a tick-related illness. 

The bill was signed into law by President Donald Trump last month. It devotes $100 million to improving testing, treatment, prevention and awareness efforts.

In 2018, the Centers for Disease Control and Prevention estimated about 1,000 Minnesotans were diagnosed with Lyme or related co-infections and even more "likely" had it.

"We actually think the number is 10 times that, so this is a health challenge affecting a lot of people," Smith said.

That is one of the factors that motivated Smith, among others, to send a letter to the Department of Health and Human Services setting a Feb. 7 deadline for the agency to create a timeline and strategy for improving inconsistent testing methods, along with updated treatment, boosting prevention and awareness.

"We don't have a moment to waste as we come into spring and summer season. These diseases are a bigger problem, and we have to be ready," Smith said.

Lisa Najarian wholeheartedly agrees. The 53-year-old Stillwater resident arrived fresh-faced with her husband, former NFL linebacker Pete Najarian, nearby. Although Lisa appears to be the picture of health, there's a darkness behind her bright smile. 

"I like that I turned my pain into purpose," she said. "I was very sick, almost bedridden."

Over 16 years, Najarian's health and quality of life drastically deteriorated. "My heart hurt, brain fog, arthritic hands — I had 60 different symptoms." 

Najarian knew something was wrong but didn't know what. Neither did the countless doctors she met with. When the Najarians moved back to their beloved Minnesota, a friend who lost his wife to the tick-borne illness encouraged Najarian to get tested.

"We all think we're gonna die because we're sick and we don't know if we're ever not going to be sick," Najarian said.  

She's dealt with a multitude of viruses and debilitating conditions and finally got accurate testing and continues to be treated by a Lyme-literate doctor, and that's particularly important. 

"It's a convoluted disease, and not everyone to this day knows exactly what is going on, and that's what the controversy is about — the not knowing," Najarian said.

Najarian still isn't 100% back to her previous healthy self, but she's on her way. And she's using her experience to help others through the Twin Cities Lyme Foundation. Potential candidates fill out an online assessment, it is reviewed, and if it's believed the patient likely has Lyme disease-related issues, the foundation will connect the patient with testing.

The CDC, which tracks the illnesses, says most patients, but not all, can be cured with antibiotics. And treatment often makes people feel worse before feeling better.

Under the Tick Act, a framework is being formed for how agencies or nonprofits can apply for the federally funded grant money.

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Credits

Beth McDonough

Copyright 2020 - KSTP-TV, LLC A Hubbard Broadcasting Company

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