LYME DISEASE: `THE GREAT MASQUERADER"

For 11 years John Lewis wondered what could be causing the symptoms he suffered -- fatigue, joint pain, disorientation, vertigo, and blurred eyesight.

He was tested for a variety of different ailments ranging from multiple sclerosis to lupus, but everything turned up negative. In 1989, he was diagnosed with Lyme disease.

This is national Lyme Disease Awareness Week. Lyme disease is sometimes known as "The Great Masquerader" because of its ability to go undiagnosed for years.

The No. 1 tick-borne disease in the world, Lyme disease is a bacterial infection that causes symptoms affecting the nervous, gastrointestinal, respiratory, muscular, cardiovascular and other systems.

Forty nine states have reported cases of Lyme disease. To date, more than 50,000 cases have been reported throughout the country.

Lewis, of Jackson, is now leader of a local Lyme disease support group. The group meets the last Tuesday of every month at 6 p.m. at Southeast Missouri Hospital. An informational meeting is also held about once a quarter.

Lewis believes he first contracted Lyme disease in 1978. The symptoms worsened until 1989.

"We were building a house and I was doing a lot of the work myself," he said. "I was a little surprised how long it took me to do jobs, and I made some mistakes I was not used to making," he recalled. "I became very disoriented. I couldn't complete a sentence. I forgot where I was going. I had trouble with my vision."

A friend who had been diagnosed with Lyme disease suggest he check out that possibility. He saw his doctor and on the second test Lewis was diagnosed with Lyme disease.

"I went on heavy oral antibiotics, then on IV antibiotics," he explained. The most severe of the symptoms cleared up, but he remains fatigued and still has joint pain.

"I am able to function, able to work, but I've really had to alter my lifestyle," Lewis said. "I had to quit every organization I was involved with and all those projects sitting there waiting for me to finish are still waiting for me to finish."

Lewis learned about a support group and began attending monthly meetings. The group, he said, allows people a chance to discuss the disease with others who understand. It also gives them a chance to learn about research and successful treatments.

"Lyme patients most often do not look sick, so people look at us and wonder, Are they really sick? Or they say, `I know how you feel' when they don't have any idea how we feel.

"There are a lot of folks who do have Lyme disease," Lewis said. "And all the tests I'm reading show there are Lyme ticks out there, especially in Bollinger County."

"I think there are a lot of people who are trying to handle this by themselves. We could be of value."

Prevention of tick bites is the best way to prevent Lyme disease.

The disease is spread primarily by an infected tick, which can range in size from a pinhead to a raisin. There are two primary types of ticks that transmit Lyme disease: the western black-legged tick, black-legged tick, and the lone star tick. The bite is usually painless. Larva ticks are the size of a pinhead, hatch from eggs and are rarely infected. The larva bites, takes one blood meal, then molts into nymphs. This adolescent stage is the most dangerous as nymphs and are rarely noticed by people because they could fit inside this letter o. The nymphs bite, take one blood meal, then molt to adults. The adults are more easily noticed because they range in size from a large letter O to a raisin.

Linda Wessel, a nurse who works in the patient education department at Southeast Missouri Hospital, also helps coordinate support group activities. She also contracted Lyme disease.

"We have new people practically every month," Wessel said. "People are seeking information and we get a lot of calls."

Wessel said most Lyme disease patients are simply looking to live normal lives.

She was bitten by a tick in 1989. "This was my first tick bite," Wessel said. "Within a month I started having arthritic symptoms. I did not have the bulls-eye rash." She questioned her doctor about the possibility of Lyme disease; she tested positive.

"Fortunately I was diagnosed early and treated fairly early," she said.

She has been off antibiotics for three years. "I feel like I'm cured," she said. "But no two people are the same. The symptoms are so varied. Mine went right to arthritic pain and profound fatigue, unbelievable fatigue. I also had short-term memory loss.

"It's an up-and-down thing," Wessel said. "A lot of people go through depression. They feel so bad and don't have the energy to do anything. I know two RNs who have had to quit their jobs because of Lyme disease."

Wessel said anyone who has a tick bite should take care when removing the tick. She also recommended saving the tick, alive if possible.

"It's also important for people when they remove a tick to document it. Write down on a card the date they had the tick bite and where they think they got it. If a month from now you start getting symptoms, it might be hard to remember when you got the tick bite."