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Lyme risk higher in area than the average
Staff Writer Dr. Betty Maloney, a Minnesota doctor who serves as medical director for the Minnesota Lyme Action Support Group, believes Lyme disease is a far more complex disease than people, including many in the medical community, fully appreciate.
And Maloney of Wyoming in east-central Minnesota, has taken time off from practicing medicine to develop and teach a six-hour Lyme disease course for other physicians, accredited through the American Academy of Family Physicians, that she's recently begun teaching around the state to help them more effectively identify and treat Lyme and other tick-borne illnesses.
A week ago Maloney was in Outing to speak at a public presentation of "Under Our Skin," a documentary about Lyme disease that shares the stories of those who suffer from neurological problems related to late stage Lyme disease. She said she hasn't scheduled any Lyme courses in the Brainerd lakes area for area medical professionals but would love to since this area is considered an epicenter of tick-borne diseases in the state and even the country.
While the Minnesota Department of Health estimates that one in three deer ticks in Minnesota is a carrier of tick-borne illnesses, Maloney said the high number of cases in this area may indicate an even greater infection rate here. Possibly one out of every two deer ticks may harbor the diseases.
Maloney said in speaking to those who attended the Outing presentation, she learned that treatments by area doctors can vary widely, from those who tell patients to wait it out after a known deer tick bite to see if they develop a rash to doctors who prescribe antibiotics immediately.
"Three years ago I realized there was a big disconnect between what patients were telling us and what physicians were hearing on courses on Lyme disease," Maloney said. "I thought this was unusual and I wanted to dig into the science, starting way back. What I came to find is that Lyme is a very complex illness and there are a lot of caveats and nuances to it. But physicians are given a fairly simplistic view of the illness. They are led to believe that the recommendations from the Infectious Diseases Society are based on more data than they are and that the outcomes are better than they are and patients show up and say 'We're still sick' but according to these studies they shouldn't be sick and they are."
Maloney said lab tests for tick-borne illnesses are insufficient and doctors have to diagnose it on clinical grounds. Yet clinical trails that treatment is based on are also insufficient. She said many studies of Lyme disease patients have dropout rates as high as 20 percent and success for treatment in those that remained in the treatment trails ran at about 65 percent. She said one year later about 10 percent of those in the studies became sicker and 25 percent had lingering symptoms.
Maloney said the protocol to treat Lyme disease with antibiotics for 28 days is based on four studies with only 96 patients and none had late neurologic Lyme disease.
Late stage Lyme disease can mimic diseases like arthritis, multiple sclerosis, Alzheimer's disease, ALS, said Maloney, which makes it even more difficult to diagnose. A patient often has more than one tick-borne infection, which also complicates treatment.
"We don't know what to do with people who are co-infected," said Maloney. "We don't know what to treat at one time. Right now it's a very messy thing to treat Lyme because we don't have guidelines to study."
"Physicians are going to have to get educated on Lyme disease. They need to understand the bacteria. Every case is going to have to take individual care because people are different. When I tell physicians in conversations they are surprised. And when I show them the numbers, they're even more surprised."
Maloney said patients have to be their own advocates or appoint a family member or friend if they are too sick and unable to think clearly, a symptom of the disease. She said if they believe they may have a tick-borne illness, see their trusted family physician with their concerns. If they get the impression that the physician isn't willing to explore that avenue, then find someone who works with tick-borne illnesses, or a "Lyme literate" doctor.
Maloney said if people get bit by a deer tick, especially in the Brainerd lakes area, they should seek medical treatment immediately. She said it is unacceptable for a doctor to make a patient wait to develop a rash since 30 percent of Lyme sufferers don't develop one.
"If you're waiting around for the rash and you've got Lyme disease, you're going to develop late stage before it ever gets diagnosed," said Maloney.
Maloney said many of the physicians she's taught or spoken to are receptive to changing the way they consider Lyme disease.
"They're happy that someone is saying 'wait a minute, we need to rethink Lyme disease," said Maloney. "I'm not claiming to have all the answers, I'm just saying what we're doing is not working for everyone."
JODIE TWEED may be reached at jodie.tweed@brainerddispatch.com or 855-5858.
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