Living with LYME

The often-mysterious disease, passed by the deer tick, is difficult to diagnose and treat
By BETHANY CARSON - H&R Staff Writer

DECATUR - Belva Gadlage's daily life is broken into two-hour increments, rotating antibiotics, blood thinners and supplements. She takes 43 pills a day, with a few warm baths and many prayers in between.

It took more than a year for her to receive the diagnosis of "The Great Imitator," her name for Lyme disease because it is a multisystem disease that can affect every tissue and organ in the body. It also can mimic, be misdiagnosed or contribute to numerous other conditions.

Now, when she's not working as a clinical professional counselor, she expends most of her energy connecting with others who understand the complicated manifestations of Lyme disease.

Her body reacted to untreated Lyme by giving her constant stabbing, burning sensations, worsened by cold weather, tight-fitting clothes and bed sheets.

"It feels like you stuck your finger in an electrical socket, and it won't turn off," she said. She wore overalls over her petite frame and Nike flip-flops on her socked feet, two mainstays in her wardrobe since Lyme has changed her life.

She still doesn't know when or how she contracted the disease.

The U.S. Centers for Disease Control and Prevention said humans become infected with a Lyme bacterium after an infected deer tick has bitten them. The agency said 95 percent of the 23,000 cases in 2002 were reported in a dozen states, not including Illinois. The closest was Wisconsin.

Local research and anecdotes might suggest otherwise.

"Do the deer ticks in Wisconsin look at a sign and stop?" Gadlage asked sarcastically. "It's out there. It's very, very close to us, and it can destroy your body. How can there be something so close to us and we don't know anything about it?"

The CDC said the most common symptom is a "bull's-eye" rash, sometimes accompanied by migraines, fever, fatigue, headache, muscle aches and joint aches.

Gadlage felt none of those.

In January 2003, she awoke with flulike symptoms. Five weeks later, she developed a severe stiff neck and a tingling finger. Initially treated for a pinched nerve, her burning sensation spread and strengthened after neck surgery. Her surgeon did nothing wrong. The trauma from any surgery would have triggered the Lyme, she said in hindsight. She later developed a twitching in her face.

Her primary care physician, neurologist and surgeon did all the testing available, considering multiple sclerosis, Lupus and Lyme disease. All came back negative.

She spent hours researching; yet, she never closely looked at Lyme because the first few symptoms didn't match her condition. Had she scrolled down further on the CDC's Web site, she would have recognized familiar symptoms of untreated Lyme disease: stiff neck, facial palsy and sensory nerve inflammation.

Susanna Warner also experienced the difficulty of obtaining a diagnosis, starting eight years ago. As a middle school student and cross-country runner, she was diagnosed a year after her first symptoms. She is still coping with the long-term effects of the disease.

She has worked with another Central Illinois resident with Lyme, Chris Corrie of Monticello. They formed the East Central Illinois Lyme Disease Support Group.

"The strange thing about this disease is there are probably more people who have it that don't recognize it," Corrie said. "The support group is a huge tool in people's recovery. It makes them aware that there are other people out there in the same boat that they are in with the same kind of symptoms."

He continued, "The root problem of Lyme disease is there is not a recognized, gold star test."

He cited Dr. Dick Warner, Susanna Warner's father, a University of Illinois professor of wildlife ecology who pressed for the need for the state to look into Lyme disease more carefully even before his daughter fell ill.

"There is no doubt that this organism is spreading in Illinois," Dick Warner said.

Professor Uriel Kitron's research at the U of I at Urbana indicates a local perspective. He has conducted an ongoing study, beginning in the mid-1990s, looking at the risk of Lyme disease in Wisconsin and Northern Illinois. In 2002, the study concluded north-central areas of Illinois have an adequate habitat for tick populations to grow, especially along the Illinois and Mississippi rivers.

"We think the rivers provide very good corridors for movement," Kitron said. "They can bring the ticks to a new area."

Whether the ticks survive in new terriroty, however, depends on the environment. "Ticks need humidity," he said. "They don't do well if it's really wet. You need wood and the right kind of soil and other kinds of factors for the ticks to do well."

He said ticks have thrived for at least a decade in two Illinois parks, Castle Rock State Park in Ogle County and Loud Thunder Forest Preserve in Rock Island County.

Closer to home, Kitron said Rock Springs Center, Friends Creek Regional Park and Sand Creek Recreation Area could have an appropriate environment for ticks. On the other hand, he said he would not expect to find large numbers and would not expect them to survive. The ticks also might not be infected.

"If there is a risk, it is very, very low," Kitron said. He added humans have one to two days to detach a tick before infection occurs.

The downside of living in a low-risk area, however, is the opportunity for overlooking Lyme disease as a diagnosis is much higher, he said. Not only are physicians less inclined to test for Lyme but the actual tick can be hard to detect. The Lyme Association of Greater Kansas City said a tick in its nymph stage is as small as a poppy seed.

Funding for Lyme disease research is also difficult to secure, according to Dick Warner.

"No. 1, it's controversial because you can't prove how many people have Lyme," he said. "No. 2, not that many people die outright from Lyme disease."

He has started working with a Boston Lyme specialist, Dr. Sam Donta, to develop direct-detection tests. Warner said the tests would be more reliable than the current standard tests, such as the Titer and the Western blot that measure the immune system's reactivity to the Lyme bacteria.

The CDC and U.S. Food and Drug Administration have supported tests for extended immune system functions.

Dick Warner disagreed with that recommendation.

"The problem with Lyme disease is it usually evades the immune system, so there's only a vague response," he said. "Any immune-system based test is going to be unreliable."

Donta, a retired professor of medicine at Boston University, agreed and said while the Western blot produces more specific results, it still doesn't single out proteins that are unique enough to Lyme.

"We need more discriminating tests, and the Western blot isn't going to do it," he said, adding the test only tells whether the body has been exposed to the disease, not the level or severity of the disease.

He said scientists have looked at DNA in blood, spinal fluid and urine but found nothing. He said they incorrectly concluded the cells were absent of Lyme, which is because Lyme bacteria are rarely in the blood, spinal fluid and urine.

Instead, he said, scientists need to look at the root of what's causing the Lyme symptoms, such as the numbness, burning and brain fog. That means, he said, scientists should look at the nerve roots of the spinal cord and the brain.

"There has been research in monkeys, but there is no more of this going on," he said. "People want to see results that appear to be well-controlled studies. That does make sense. The problem with that is I still haven't figured out what the best study is."

Not only do scientists have to battle the complexities of Lyme disease, but they also have to face the difficulty of developing sound experiments with the right people involved to secure funding.

"We need to really sort out who has Lyme, why they respond or don't respond, and what else they have," he said. "Then we could set up reasonable studies."