Stingl: Woman with chronic Lyme disease brings message to the big screen

Sure, Amy Hojnacki was told, you can take over a movie theater to screen a documentary on Lyme disease.

First, you have to sell 87 tickets to the show.

Hojnacki, who has struggled with this disease for years, often has trouble just getting through the day. But she met the challenge, sold 100 tickets, and on Thursday at 7 p.m. will host a screening of "Under Our Skin" at the Downer Theatre, 2589 N. Downer Ave.

"Its crazy. It's actually happening," she said.

The film explores the challenges that patients like Hojnacki have in obtaining an accurate diagnosis and effective treatment, getting insurance to cover it, and even persuading the medical establishment to recognize chronic Lyme disease as a real thing.

"The past 10 years, I've been ridiculously sick and going to specialist after specialist. And surgeries. It just snowballed. It never got any better," she said.

Finally, her primary care doctor, who coincidentally had just returned from medical leave to care for her own children with Lyme disease, looked Hojnacki in the eye and took her hand.

"She was like, 'Amy, I think you have Lyme and you need to treat it now. Time is of the essence.' I was losing my ability to walk, to feel my face. I was slurring and drooling sometimes. It was bad," she said. A better test confirmed her diagnosis.

Hojnacki, who is 37 and lives on Milwaukee's west side, has two other parasites that complicate her illness. She has been on oral antibiotics for a year and has seen some improvement in her condition. 

It's a controversial treatment, which some patients take intravenously. The Centers for Disease Control and Prevention, which prefers the term post-treatment Lyme disease syndrome, reports that "studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo. Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications."

You'll have to forgive Hojnacki for her skepticism of the experts. Her initial test for Lyme disease was a false negative. This test is accurate only 40% of the time, she said.

"So that one test, if you're not positive, you're not going to get coverage for your medical needs," she said. She has the state's BadgerCare insurance.

Hojnacki, who is unable to work, has received financial help from family members and through a GoFundMe plea online that has raised nearly $12,000. She travels to Fond du Lac for treatment at the Fox Valley Wellness Center under the direction of what she calls a Lyme-literate doctor.

She is administrator of the 900-member Wisconsin Illinois Lyme & Coinfection Support Group on Facebook. And she recommends the Global Lyme Alliance as a source of reliable info on the disease.

But she felt she needed to do more to spread the word, especially during Lyme awareness month, May. So she contacted Tugg.com, which offers to "bring your favorite movies to the big screen." They connect with local theaters, but it was on her to fill the seats.

If you want to join her at the Downer on Thursday, you must buy tickets on the Tugg.com site. They are $12, and as of Tuesday there were 71 left.

The 100-minute film, which is from 2008 but still relevant today, Hojnacki said, introduces viewers to a few of the estimated 300,000 people who contract Lyme disease each year in the United States.

"And yet, the medical establishment — with profound influence from the insurance industry — has stated that the disease is easily detectable and treatable, and that 'chronic Lyme' is some other unrecognized syndrome or a completely psychosomatic disorder," the film's summary says.

Other than watching out for ticks, I didn't know anything about this push-and-pull in the medical community over Lyme. That didn't surprise Hojnacki, who has been living it.

"This project has motivated me to find meaning in my suffering," she said. "It's really the only way I've been able to cope with it because it is very devastating and depressing. The one thing I can control is educating people."

Contact Jim Stingl at (414) 224-2017 or jstingl@jrn.com. Connect with my public page at Facebook.com/Journalist.Jim.Stingl