Kiersten Hathaway of Panora, Iowa, has been an elite athlete her whole life. She has completed four Ironman triathlons. She finished eighth in the Des Moines Marathon last fall. Then, her body began to rebel and the pain began. After consulting multiple doctors, she was diagnosed with Lyme disease. / Christopher Gannon, The Des Moines Register
DES MOINES, Iowa - Kiersten Hathaway had a rash last fall.
The Panora, Iowa, woman wondered whether it was Lyme disease, a bacterial infection transmitted by deer tick bites. She looked at pictures online, but didn't think her outbreak matched the red bull's-eye associated with Lyme disease. She didn't have a doctor check her hypothesis. She regrets that.
Hathaway, 38, now believes she suffers the long-term effects of untreated Lyme disease. The rash eventually faded, but bigger problems quickly emerged. Sleeplessness and anxiety gripped Hathaway in late February. By early March, her muscles burned and her joints ached.
Lyme disease reports are on the rise in Iowa. The Iowa Department of Health recorded 236 cases in 2013, the most since officials began tracking the disease in 1989. The ticks that carry the bacteria are becoming more common in central Iowa, said Ann Garvey, a doctor with the Iowa Department of Health.
"The majority of cases take place in more densely wooded states such as the Northeast, Minnesota and Wisconsin," Garvey said. "But it's definitely on the rise. Detection techniques have gotten better, and reporting is up."
For some people who contract the disease, debilitating pain defies any answers that science has so far provided.
Hathaway is a runner who finished eighth in the Des Moines Marathon last year.
But she could no longer run and was having a hard time even walking. Some days Hathaway felt like she forgot how to use her left leg.
She felt her personality changing, too. She was short-tempered and irritable. Then she became more outgoing and talkative, losing track of time and her ability to concentrate at work. Her short-term memory was shoddy.
"I thought I was going crazy," Hathaway said.
In 80 percent to 90 percent of Lyme disease cases, the bull's-eye rash appears. Symptoms include fever, headaches and fatigue. A quick treatment of antibiotics clears up the problem in most cases.
But untreated, the disease can lead to intense muscular and joint pain and damage to the heart and the nervous system, including cognitive function.
Hathaway's doctor ordered a series of tests, including one for Lyme disease. It came back negative. Hathaway did what people do these days: She looked online for others with her symptoms. Again and again, Lyme disease came up. She asked her doctor to send a blood sample to IGeneX, a testing laboratory in San Jose, Calif., that specializes in Lyme disease.
IGeneX has been the subject of some controversy. The lab uses a variety of tests to detect the Lyme disease bacteria, but many doctors and public health officials argue there is no proof they work. Hathaway was aware of the controversy but pushed for her blood to be sent there anyway.
Hathaway and her husband, Jeff, paid out of pocket for the test because it was not covered by insurance.
The results met the U.S. Centers for Disease Control and Prevention's definition of Lyme disease. This eased her mind. She worried she was so desperate to find out what was wrong with her that she would take any answer just to have an answer.
"I don't feel like I was led to Lyme disease, and I don't feel that I'm grasping for anything," Hathaway said. "It's true that I want to know what is happening to me, but I believe this is the right diagnosis."
Hathaway found a doctor in Columbia, Mo., who specializes in treating Lyme disease. He prescribed high doses of powerful antibiotics over long periods. Hathaway began the treatment in May, and she switched to different antibiotics earlier this month. She will keep on taking the antibiotics until she is symptom-free for four weeks.
"I feel somewhat better," she said. "My concentration is a little better. I have less pain."
The treatment is controversial. The CDC says "studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo."
The health agency further warns of long-term side effects of prolonged antibiotic dosage, including damage to the heart, lungs and liver.
"I believe the good outweighs the bad," Hathaway said. "I believe the course of treatment we are on will be the wave of the future."
That's dangerous thinking, said Dr. Daniel Gervich, who specializes in infectious diseases for Mercy Medical Center in Des Moines. Gervich, who has not treated Hathaway and does not know her, believes Lyme disease is often misdiagnosed for patients who present a collection of symptoms that "don't offer a discrete diagnosis."
"The truth that is hard for some patients to accept is that medical science does not always have all the answers," Gervich said. "That leaves people in an extremely difficult situation, understandably so. Many times we are able to rule something out, but not immediately define what it is."
Denise Rourke has also battled Lyme disease.
Rourke, 61, of Pleasant Hill, Iowa, is a secretary at at a high school. Her husband, Gary, took his own life in September 2009. The medical examiner lists Gary's cause of death as a self-inflicted gunshot wound, but his widow believes what really killed him is Lyme disease.
Gary Rourke was a high school vice principal. He also was an avid hunter and loved the outdoors. Rourke first showed signs of Lyme disease in 2004. He never developed the bull's-eye rash, but he eventually was tested for Lyme disease and took a series of antibiotics. The couple thought the problem was finished, but he experienced flare-ups every eight months to a year.
"It would just knock him out for about a week or two," Denise Rourke said. "He would have a lot of pain and couldn't get around."
Like Hathaway, Gary Rourke was an athlete, strong and proud. This disease, which came from something as tiny and seemingly insignificant as a tick, leveled him. Over the next five years, Rourke's symptoms recurred more frequently and with greater intensity.
One day at school, a colleague found him laid out in the nurse's office. He told his friend he was in so much pain he couldn't move. His personality began to change. The normally extroverted Rourke became surly and withdrawn. The pain forced him to miss school for weeks at a time. Outwardly, Rourke tried to hide his misery.
"After he died, I got a bill from a pain management center that I didn't even know he was going to," Denise Rourke said. "He hid it even from me. I'll never know how bad he was feeling."
In September 2009, Gary Rourke was in such bad shape that Denise decided he needed to go to the emergency room. She called their eldest son to enlist his help in getting him to the hospital.
Denise heard a loud noise in the house. She figured Gary, always stubborn, had slammed the family room door. But when their son arrived and went into the room, he found his father dead.
Her husband is gone, and still Lyme disease haunts Denise Rourke. She has spent hours on the Internet reading about the disease. She has posted in chat rooms and interacted with other people who have lost loved ones to Lyme disease.
"Gary was not the first person to take his own life over this, and I doubt he will be the last," Rourke said.
There are so many unknowns. Most doctors believe Lyme disease isn't the problem, that it's other ailments such as chronic fatigue syndrome or fibromyalgia.
Gervich, the Mercy doctor, said sometimes the body continues to react to an infection even after the bug itself is gone. And some research suggests long-term inflammation may be a result of previous infections.
"I've been practicing in the field of infectious disease for 36 years," Gervich said. "When I was a young doctor, I thought we knew so much more than we did 10 years before, and we had it almost all figured out. Now I know that what we don't know vastly dwarfs what is known."
So the search for answers goes on. For Rourke, it is too late. For Hathaway, there is hope.
Read the original story: Living with Lyme disease, searching for answers