Traverse City Record-Eagle

August 25, 2012

Group helps those with Lyme disease


TRAVERSE CITY — Judy Mallory was diagnosed with arthritis after her knees swelled to twice their normal size.

For more than a dozen years she struggled with the pain, trying one remedy after another. Meanwhile she chalked up the muscle aches, headaches, fatigue and other maladies that came and went to overexertion or stress.

But when memory problems began to cause trouble at her job, Mallory knew there was something else wrong. In 2011 she recalled an article she'd saved in a file. Rereading it, she recognized her symptoms as Lyme Disease, most likey contracted after she was repeatedly bitten by bugs during an outdoors visit with a Traverse City friend.

By the time it was diagnosed by a specialist in Saginaw, the disease had already reached a chronic state. Now Mallory is hoping a new Lyme Disease support group will help others in the area cope with the disease. The group's first meeting is set for 7 p.m. Thursday, Aug. 30 at the Living Hope Chalet on Three Mile Road.

Mallory said the idea for a support group stemmed from conversations she had at a July Lyme Disease awareness and education program presented in Traverse City by the Michigan Lyme Disease Association.

"I noticed that everybody seemed to know somebody that has Lyme Disease but nobody tells," said Mallory, 71, of Mesick. "We need to encourage each other to be vocal. It's like some deep, dark secret. And it shouldn't be. We did nothing wrong to get this Lyme."

Lyme Disease, caused by a spirochetal bacterial infection that is thought to be transmitted predominantly by the bite of the Ixodes Scapular or deer tick, is a complex disease and one about which there are many misconceptions, said Linda Lobes, president of the Michigan Lyme Disease Association.

"Testing is the biggest problem," said Lobes, who contracted Lyme in 1989 after being bitten by a tick in the Sleeping Bear Dunes National Lakeshore. "There's no test out there that's 100 percent (accurate). The other is the bulls-eye rash. Not everybody gets a rash or can see it if they do. How many times do you look at your back in a mirror, or your skull? And some people don't remember getting bitten by a tick and that's not uncommon when you're looking at something the size of a period at the end of a sentence."

Another misconception is that Lyme can be cured quickly, Lobes said.

"If you're diagnosed quickly then the chances of it getting in your system are little to none. But if you're not treated quickly it can lead to a chronic state," she said. And that's where more problems come in.

Lyme symptoms can mimic the symptoms of some 300 other diseases, often causing patients to be misdiagnosed with multiple sclerosis, chronic fatigue, fibromyalgia, hypochondria or lupus, Lobes said. And because there are only 10 known Lyme Disease specialists in the state — none in northern Michigan — many doctors don't know what to look for.

"I went through I don't remember how many doctors and tests," said Pam Maize, 53, who believes she contracted Lyme Disease while camping in Interlochen or Lake Ann or walking in a field across from her Chums' Corner subdivision. "After three years they gave up. They said we don't know, go to a psychiatrist. They even asked if my husband beat me."

Then there is perhaps the biggest misconception of all: That Lyme Disease occurs only in other states, despite research to the contrary. More than 75 reported cases of Lyme were confirmed in Michigan in 2010 and 19 other reported cases were probable, according to the Centers for Disease Control and Prevention.

"I get on average 300 to 400 calls a month. And half of those are saying doctors are telling them there's no Lyme in Michigan," Lobes said.

A new support group can not only help people recognize the symptoms of Lyme and seek earlier treatment but also help those with the disease cope better, Lobes said.

"It gives people the sense of knowing they're not alone, they're not crazy," she said. "It helps them start understanding their symptoms and why they are the way they are. Often people get sicker before they get better and that's because of the die-off process of the disease. And some people don't respond well to antibiotics and may choose natural treatment. They're there to help each other as far as what treatment they get and what they learn. It also helps educate family members to understand what their family members with the disease are going through."

For more information about the group or Lyme Disease, contact the Michigan Lyme Disease Association at (888) 784-5963.