'I'm not giving up'

By Martha Manikas-Foster

Special to The Leader

Lis Heininger remembers carrying her daughter Marisa up and down the stairs and around the house when she brought her home from the hospital six years ago. Today it is Marisa who helps her mom around, pulling her out of chairs and twisting her around to reach her walker.

Heininger, a 38-year-old Corning mother, wife, Ph.D. and former grant director for the Early Childhood Professional Development Center at Corning Community College, is now housebound. She depends on a walker, a scooter and family and friends for help and transportation. The reason?

Lyme disease.

Until January, Heininger lived for 20 years believing that multiple sclerosis was the cause of her growing disability. She is one of an increasing number of people who are learning that Lyme is a "disease in disguise," according to an Aug. 23 Newsweek article. Symptoms of Lyme disease are reportedly misdiagnosed as one of a range of conditions, including lupus, Parkinson's disease, juvenile rheumatoid arthritis, as well as MS.

Heininger wishes she could play with Marisa at the playground, or take her to piano and ballet lessons. She wishes that she could use her abdominal muscles to sit up on her own, and that she didn't need to choose her activities based on how much energy they will consume.

"I feel that if I didn't have the support system that I have - my family, friends, church and my strong faith in God - I wouldn't be able to say, 'I'm not giving up.'"

Heininger was a gymnast and a member of the Corning East volleyball, tennis and track teams when, as a sophomore, her eyesight began to fail. Soon she began to feel numb from her wrist to her toes and from her elbows to her fingertips. Two years later, in 1984, she was diagnosed with MS. Heininger went on to study MS, including the condition in her doctoral thesis and speaking to national and international groups on the topic.

At the time Heininger was diagnosed with MS, researchers were only beginning to learn about Lyme disease. Scientists were working to identify the bacteria they believed was behind the clusters of arthritis observed among children in Lyme, CT in 1977. In 1984, the same year Heininger was diagnosed with MS, researchers conclusively identified the culprit: the bacteria B. burgdorferi, transmitted to humans by adult deer ticks.

The Centers for Disease Control began surveillance for Lyme disease in 1982, and it was as recently as 1991 that the Council of State and Territorial Epidemiologists designated Lyme disease as a nationally notifiable disease.

Typically, Lyme disease presents itself with a "bull's eye" rash, accompanied by symptoms such as fever, fatigue, headache, aching muscles and joint aches. Some who are infected, however, experience no symptoms at al, or have all of the symptoms but never get the distinctive rash.

Lyme disease spreads from the site of the tick bite by way of the skin or the lymph or blood systems. If not treated, Lyme disease can present itself as a disease of the central nervous system, the musculoskeletal system, or, more rarely, the heart. Lyme disease is rarely, if ever, fatal.

With her re-diagnosis in January, Heininger looks back to her childhood and believes that what doctors identified as a Roseola rash when she was four years old was likely the telltale rash associated with Lyme disease infection.

"We had just been camping in New England as a family before the rash," Heininger said.

Areas of New England have some of the highest concentrations of the disease, according to the Centers for Disease Control, but Lyme disease is also prevalent in the northeastern, Mid-Atlantic and upper north-central states.

Heininger did not have to travel far from home to risk exposure, however. New York is one of the 12 states that reported 95 percent of Lyme disease cases in 2002. While Steuben County is not shown as a high risk area for the disease, portions of the state to the east and to the west do have that distinction.

"I strongly believe all these things happened to me for a purpose: to raise awareness, to provide advocacy and to tell people that they can ask questions," Heininger said. "I had to look into all these things. It is very difficult and intimidating to go to medical experts and question them."

Heininger is not the only member of her family to suffer with Lyme disease. Her husband, Andy, and daughter Marisa have also tested positive for the condition. Because Andy grew up in Vermont and has been living in this area for years, it may be impossible to determine when he contracted the disease. Regarding Marisa, researchers debate whether the disease can be transmitted from mother to child.

Some might despair at such a diagnosis.

Not Heininger, even though in July she had surgery to remove a tumor on her pituitary gland that may be related to the condition. Heininger's January diagnosis and the antibiotic regimen that accompanied it have raised her expectations. Already she has stopped slurring her speech and her complexion has improved. She fully expects to walk again, which, she realizes, will send 6-year-old Marisa into retirement.