Story by Kay Kemmet | The Grand Island Independent
Writer’s note: Through one woman’s story, this article about Lyme disease reached many people who didn’t realize the severity of the disease as well as others who suffer from the same illness. I received many positive comments and emails long after the story was published.
Karleen Sundermeier ran up to eight miles every day for 10 years, but now she’s bed-ridden 90 percent of the day.
It started with the flu in 2007 — she describes it as the worst flu she has ever had. Until January 2011, she thought she had multiple sclerosis. But this year, she was diagnosed with Lyme disease.
“Most doctors don’t believe it’s here in Nebraska or in the Midwest,” Sundermeier said. “But it’s in every state.”
She doesn’t remember a tick or a bull’s-eye rash — the initial sign of a Lyme infection. But she was probably infected during a day jeeping on the Platte River with friends.
“It doesn’t look like I’m sick on the outside, but it’s completely destroying my body on the inside,” said Sundermeier, who has lived in Grand Island since she was 18.
And she’s right. With her makeup thoroughly applied and long brown hair, Sundermeier looks like any other 31-year-old. You can’t tell she had to lie down twice while trying to cover her illness with blush and eyeliner. But an hour at Tommy’s Restaurant on May 20 is the longest she has been out of the house for about a year.
“I was fitness queen,” Sundermeier said. “I think that’s probably what has kept me from being in a wheelchair or probably dead, because this disease can kill you.”
Once she stands up to walk from the back of the diner to her mother’s car, it’s a little more apparent. She said she “walks funny” because of rheumatoid arthritis caused by the Lyme disease.
Because Sundermeier doesn’t look sick, she often has to explain her illness to friends and family. “It’s like I have MS going on in my body,” she said. “And it’s like I’ve had a stroke in my brain.”
May has been National Lyme Disease Awareness Month, and Sundermeier exemplifies how severe the disease can get.
But Lyme disease isn’t very common in Nebraska. Seven cases of Lyme were reported in Nebraska during 2010 and two cases have been reported this year, said Trina Vap, Central District Health Department health educator.
Nationwide, 30,000 cases were confirmed in 2009, according to the Centers for Disease Control and Prevention.
Because Lyme isn’t prominent in Nebraska, many doctors do not test for it.
“If it’s not in this area for the most part, then you aren’t going to be testing everyone for it,” said Dr. Mike McGahan, medical director at the St. Francis Medical Center emergency department.
The typical treatment for Lyme is a month of antibiotics, but because Sundermeier was infected for four years by the time she was diagnosed, she said she will be on antibiotics for years.
By the time Sundermeier was diagnosed with Lyme by a doctor in Omaha, she was relieved, but her treatment has been an ordeal.
She also has five lesions on her brain that affect her “ability to find the words,” she said. She also has difficulty focusing, and her short-term memory continues to worsen.
She also has co-infections in addition to the Lyme spirochetes: babesia, a malaria-like parasite, and HHV-6 virus, which attacks the body like HIV. Sundermeier said she essentially has no immune system.
“I only have half, less than half, of the medications I need, because of how expensive it is,” Sundermeier said. “When you are unable to work or have insurance, it’s difficult to pay for it.”
To treat the parasites, she takes 2,500 milligrams of antibiotics a day. She has been on the medication for only four months, and since then, it has gotten worse before it can get better.
“I haven’t felt like I’m getting better at all,” she said. “I’ve got a long ways to go.”
Sundermeier relies on her parents and isn’t even able to cook for herself. Until April 2010, she worked as a physical therapy technician at Grand Island Physical Therapy, but the disease became so disabling that she had to quit. She worked there for 10 years and was planning on starting classes at Central Community College to become an occupational therapy assistant.
“The fatigue is the worst thing you’ve ever had,” Sundermeier said. “I wake up fatigued.”
She’s also in constant abdominal pain. At one point before she was diagnosed, she thought she had a hernia and had a surgery to repair it, but there was no hernia.
In her experience, regular doctors will target one of her symptoms, such as the arthritis, instead of looking at all the symptoms. She said that’s why the Lyme disease diagnosis took so long.
“People and doctors believe it’s psychosomatic or that you’re making it up or you’re a hypochondriac,” she said. “And you’re not.”
Sundermeier calls her Lyme disease chronic, but that’s not a term accepted by CDC.
Instead, they would refer to Sundermeier’s case as post-treatment Lyme disease syndrome. But doctors such as Sundermeier’s Iowa doctor who have studied Lyme disease through the International Lyme and Associated Diseases Society agree that a case like Sundermeier’s is chronic Lyme disease.
“You aren’t better until all these symptoms are gone,” Sundermeier said. “At the stage I’m at, I’ll be dealing with this the rest of my life because it’s such a bad infection.”
Sundermeier doesn’t have insurance, and even if she did, it wouldn’t cover her medical costs, because chronic Lyme isn’t recognized. She should have a catheter or PIC line for direct injection of the medication, but right now, she can’t afford it. All of her medications have to be paid for out of pocket, and without Medicaid or disability benefits, she’s completely reliant on her parents.
“I just want people to know, you don’t take Lyme disease lightly,” Sundermeier said. “I didn’t know it could do this to you.”
She said she doesn’t want to scare people, but she thinks it’s important to inform people about Lyme. If she knew the signs, she said, she could have diagnosed the disease four years ago and then maybe it would have only taken a month to treat it.
“I don’t want people to suffer the way I have been suffering,” Sundermeier said. She encourages people to watch “Under Our Skin,” a documentary about Lyme disease. It will air on PBS, or NET2 in Nebraska, on Thursday.
At Sundermeier’s stage, the physical and mental damage has been done, and even after the antibiotics kill the infection, many of her symptoms, such as the brain damage and arthritis, could remain. She doesn’t know how it’s going to affect her in the future.
“It’s taken my life from me, really,” Sundermeier said. “It’s taken who I am and what I’ve done in my life away from me.”
It’s difficult for her mom, Pamela Grace Sundermeier, to watch her daughter be this sick.
“You go into the other room and cry, or you go find a place outside and cry,” said Pamela, who has watched her daughter’s illness progress.
Karleen said she used to be a social person, but right now, that isn’t even a concern. Instead, she’s just trying to make it through each day.
“The only thing on my mind is I don’t want to die,” she said.
“She’s my only daughter. You expect things coming up at this age,” Pamela said.
And Karleen responded with a laugh, “Don’t count me out for that stuff, because I’m not done.”
Karleen hopes to get over the disease, go back to school and get her active, independent life back. Once she has the strength, she also wants to start a support group.
“I’m a fighter,” she said. “I wouldn’t be sitting here if I wasn’t a fighter.”
When I got a call from Urgentcare that I had Lyme Disease, I laughed. I didn’t think it was a big deal at all. I figured there was some inhaler, or perhaps an antiobiotic that actually worked long term and I’d be hitting the gym again in no time. Boy, was I whistling in the dark.
I am 28 years old–a former editor, a former college student, a former man sometimes it feels like–and now I live at home with Mom and Dad and the only thing I can do to stop this constant pain and fatigued is to become more fatigued–to take Tramadol, a weak opiate.
I refuse to be defeated by this illness in my mind. I still write a lot (maybe more than before since each day is like a coffin in this house) and occasionally go for walks. My mind says hope and my body says D E F E A T. I hope one day the Medical Association will decide on competency in this area. Great article here.