Editor's Note: First in a three-part series on Lyme disease.
FAIRMONT - How prevalent is Lyme disease?
That depends in part on who you ask. In fact, a lot of things about Lyme depend on who you ask, from the diagnosis to the treatment.
LYME LAYOUT — In 2011, 96 percent of Lyme disease cases were reported from 13 states, ranging from Maine south to Virginia and west to Minnesota. Map courtesy of National Center for Emerging and Zoonotic Infectious Diseases, Centers for Disease Control and Prevention.
Each year, state health departments report about 30,000 cases to Centers for Disease Control and Prevention. New studies are indicating the number of new cases per year is actually higher than that. Much higher.
"CDC has said now it's not 30,000 but probably 300,000 or more new cases in a year," said Dr. Elizabeth Maloney, who presented a Lyme disease seminar this year to local health practitioners in Fairmont.
Maloney is president of Partnership for Healing and Health, a medical education company that develops accredited programs on tick-borne diseases. She attended the CDC's conference this summer in Boston, when the preliminary results of their Lyme disease studies were presented.
Health care providers have not been consistent in reporting cases, so the CDC has begun looking at other methodologies for assessing the disease's prevalance.
"We are seeing much more Lyme as we look more closely for it," said Dr. Steve Parnell with Dulcimer Medical Center in Fairmont, who recently filed 15 new cases with the Minnesota Department of Health, not including the most recent of diagnoses. "I know that I have missed the diagnosis in the past, and we are working hard to see that we miss fewer cases in the future."
Minnesota is among the top 13 states in the country for Lyme disease. In 2012, the CDC reports that 95 percent of all Lyme cases were found in those 13 states, most of which are on the East Coast, with the exception of Minnesota and Wisconsin.
But not everyone is reporting Lyme disease at the same rate as Dulcimer.
"This year we didn't see quite as much," said Jessica Sheehy, a physician assistant and Mayo Clinic Health System infectious diseases specialist out of Mankato.
The few cases she has seen have been more severe, though, in some instances causing facial paralysis.
So why is Dulcimer finding so many more cases of Lyme than Mayo?
There are several reasons, all of which help illuminate how contentious Lyme disease is today.
Even the symptoms of Lyme disease vary, depending on the medical provider.
For years, the bull's eye rash was believed to be the main indicator of Lyme disease. Only recently have clinicians concluded that the bull's eye appears in the minority of Lyme cases.
"Less than 20 percent of patients actually get a bull's eye rash," Maloney said. "Usually it's just a pink rash, oval shaped ... but 30 percent have no rash."
In addition to the rash, early presentations of Lyme disease are similar to the flu - fever, aches, malaise - but she cautions that sometimes there are no symptoms at all.
Maloney encourages providers to check for a long list of issues: abnormal vital signs, skin rashes, eye abnormalities, joint abnormalities, sensory changes, muscular troubles, gait disturbances, balance difficulties, tremors, reflex changes, mood alternations, cognitive disturbances, disorganization, short-term memory loss, just to start. The most important exam, she told providers at her seminar, is the neurological exam.
Sheehy, on the other hand, said people with late Lyme disease, or a phenomenon she called post-Lyme disease synrome, are most often afflicted with arthritis. Neurological disorders are not common.
Samantha Wendt of Sherburn found out she had Lyme disease this summer, shortly after her daughter was born. The pregnancy was riddled with complications, including what felt like severe uterine contractions, which her physician has linked to the Lyme. She was hospitalized nine times before her daughter was born four weeks early on the tenth hospital visit.
"At my peak, I had a hard time remembering things," she said. "Normal everyday things were tough."
Her symptoms, which include memory loss and joint paint, can be traced back about 10 years, but she says that's just a guess as to when she might have contracted Lyme since there's no way to test how long a person has had Lyme disease.