MINNEAPOLIS (WCCO) — Cabin country in Minnesota and western Wisconsin is considered ground zero for one of the fastest growing infectious diseases: Lyme disease.
Cases in both states are among the highest in the country, but the controversy surrounding how to treat the tick-borne disease is growing. It’s torn families apart and pit patients against mainstream medicine.
Looking down at a pile of medications, Tracie Young feels frustrated.
“This is what allows me to have a life and to be with my kids,” she said.
Young’s medical story begins long before her life as a mother. As a baby herself, complications from heart surgery cost Tracie her right arm. She had no idea she’d face an even bigger health challenge years later.
“It just seemed like she was always sick,” said Tracie’s mom, Barb Derosier.
Growing up in Brainerd, playing outside was a part of life, but Tracie always felt tired and run down, never quite able to keep up with the other kids.
“It’s like we were never totally believed,” Derosier said.
Doctors didn’t have answers. They blamed spinal meningitis, chronic fatigue disorder, and, finally, depression. But just a few years ago a nurse suggested Tracie be tested for Lyme disease. Tracie believes she’d been living with the bacteria in her body for years.
Just like more than half of people diagnosed with Lyme, she never developed a bull’s-eye rash.
“It’s something so small and something I consider so deadly,” Young said.
Tracie is a member of a growing group in Minnesota’s cabin country.
Crow Wing County accounts for 20 percent of the state’s cases. They share their stories each month, wearing green: the color that symbolizes their suffering.
“What makes me cry is just thinking about the way he used to jump on the trampoline with the boys or run after them,” said Nicole Koll as she choked up talking about her husband.
Jakin Koll always considered himself healthy. He’s collected medals from marathons and has run the constant race of raising two boys at home.
“They don’t ask as much anymore because they just know,” Nicole Koll said.
A headache every day for three years and severe joint pain put Jakin on powerful pills after a positive Lyme test last spring. His wife is on her own medication for the same disease. Since most insurance companies won’t pay for long-term Lyme treatment, the Kolls have spent close to $100,000 of their own in search of relief.
“It’s a risk you kind of have to take,” Jakin Koll said.
Dr. Mike Osterholm is director of the Center for Infectious Disease Research and Policy at the University of Minnesota. He’s studied Lyme disease since its discovery three decades ago. He believes the debate over what’s called chronic Lyme is driven by emotion and not supported by science.
“This is not good medical practice. This is not good science. It’s dangerous,” Osterholm said.
“The data are clear and compelling that that chronic Lyme disease does not exist as defined by the ongoing multiplying of bacteria in the body and the ongoing use of IV antibiotics or any kind of antibiotics is actually dangerous to the health of these individuals,” Osterholm added.
Two Minnesotans have died after taking medication for months treating what they considered to be chronic Lyme. The Infectious Disease Society of America says if you’re in the woods and get bit by an infected tick, you should only be on medication for a few weeks, and if the disease has been treated before, doctors aren’t supposed to treat it again.
“I’m a prime example of that. They gave me the two weeks of antibiotics five years ago and here I am,” Megan Crist said.
Megan was bit by a tick in basic training. She got the rash and thought she’d caught her Lyme case in time. She was later deployed to Afghanistan where she had migraines, dizzy spells and chest pain.
“This was more of a war than that was for me. It’s just a fight every day. I mean it was a fight to breathe,” she said.
Doctors told the 26-year-old she needed a pacemaker to survive. Just a few weeks after delivering her baby boy and years after being bitten she was told it was still Lyme.
“That tick was loaded,” she said. “My heart was suffering, my brain was suffering.”
Some of her doctors believe the disease spread from the bite to the blood stream and eventually caused her cardiac problems.
Now, in the middle of even more treatment, Megan’s spending $7,000 a month on medications.
“There is no evidence that in fact long term treatment alters the outcome,” Osterholm said.
Osterholm doesn’t doubt these people are sick. He says in some cases Lyme can trigger chronic health problems, but Osterholm is certain the bacteria doesn’t last in the body. He says tests can be positive later in life because antibodies may still exist but they don’t do any harm, so treatment won’t make a difference.
“It’s just quackery. It’s dangerous quackery,” Osterholm said.
At a hospital in Staples, Dr. Arden Beachy is one of just a few in the state that will treat Lyme on a long-term basis.
“I guess I don’t see myself as a quack. I have people bawling, bawling in my office every day,” he said.
He grew up in Brainerd and admits this is a personal fight to find people help. Doctors like Beachy don’t advertise and are usually difficult to see since waiting lists are so long. In four years, he’s treated nearly 100 patients he says have for chronic Lyme.
“This is a tricky bacteria and it’s gotten real smart, and it’s tough to treat,” he said.
He said he makes sure they are well aware of the risks as he faces his own: doctors that treat chronic Lyme could one day lose their license to practice medicine. Since Beachy started seeing patients for the disease, he says 80 percent feel better.
“Should I just do the right thing? Or should I do just what other people want me to just because it won’t make anybody upset?” Beachy said.
Getting control is a difficult for Tracie Young and her family.
“You have to be in control of the disease. Not the disease in control of you,” she said.
Since she didn’t know she had Lyme while she was pregnant she believes she passed it on to two of her children. Doctors say if untreated, the disease can be dangerous to the health of your unborn child but there are no known cases where it’s showed up so much later.
Still, Tracie’s oldest son, 13-year-old Trey, spent months on IV’s for headaches, joint pain and fatigue.
“Everybody says how strong I am — and I am — but it’s hard,” Young said.
The Minnesota Board of Medical Practice is in the middle of a five-year moratorium on taking any action against doctors who treat Lyme with long-term antibiotics. It expires in 2015. The Department of Health said the vast majority of Lyme disease cases will be cured.
On Monday, the Centers for Disease Control and Prevention released a new estimate of the number of people diagnosed with Lyme disease annually, and it’s 10-times higher than previously reported.
To learn more about preventing Lyme and more information on the disease, click here.
To read Tracie Young’s blog, click here.
To see the Centers of Disease Control page on Lyme Disease, click here.