Lyme disease shattered her dreams
(The Newport Daily News)
By Wendy M. Fontaine/Daily News staff
Kim Tracy leans back in her lounge chair by the pool, resting in the sun at her stepbrother's summer home on Cape Cod. Her hair is the color of melting butter, her eyes are sparkling blue. Every now and then, her peach-colored lips stretch into a smile.
This postcard picture is a drastic departure from Tracy's appearance just a week earlier, when she was curled up in bed on the fourth floor at Newport Hospital. Her hair was dark with perspiration, her freckled skin was pale and bruised. Doctors had just performed emergency surgery to correct a bleeding ulcer and she was feeling exhausted and scared.
Tracy, who turned 46 Wednesday, suffers from chronic Lyme disease, an illness that is often misunderstood. It is one of the fastest growing infectious diseases in the country, according to LymeNet, an online support group for those affected by it.
The sickness, now in its late stages, has forever altered Tracy's life. It has forced her to give up her work as a human resources staffer, to abandon her hope of becoming a model and to surrender her dream to have children. Every day is a struggle to keep her body strong and her mind focused.
Those who see Tracy - a tall, thin woman with waves of blond hair - would probably never know she is sick. She's talkative and friendly, and her constant companion is a golden retriever named Token.
But her body is in constant pain. She has trouble sleeping and has frequent migraines. Often, she struggles to finish sentences. She can read several pages from a book and have no memory of what she has just read. She wears makeup to cover the dark circles under her eyes, which are induced by exhaustion. Daily tasks make her feel confused and overwhelmed. She even has had hallucinations.
"It's silly things ... food shopping, paying bills," she said. "I throw out the envelopes or I throw out the bills. Ninety-five percent of the time, people do not know how I feel because I won't talk about it, I won't tell them."
Over the past two decades, Tracy has spent more than $100,000 on treatments, tests, medications and doctor visits. She has paid much of that in cash because she has no medical insurance. Tracy always thought she would live the storybook life. She saw herself living in a big house with a family and a busy schedule. But her reality is very different.
"I thought I would be driving a Volvo right now and being a soccer mom," she said. "Sure the hell not like this ... I don't think I will ever have my life the way it was. I don't think I will ever have that."
Getting to a diagnosis
Tracy started to feel sick in 1983, when she was 25. She was going out to dinner one night in Stamford, Conn., where she lived at the time, with her fiancé and some friends when she was overcome by weakness and nausea. She lay down in the back seat of the car until it passed. She figured the symptoms were stress related; at the time, she worked as a human resources employee at one of the biggest advertising agencies in New York, and was commuting every day from Connecticut to Manhattan.
"Nobody put two and two together," she said. The feelings of sickness persisted. In 1988, she visited infectious disease specialists and was tested for a variety of illnesses, including mononucleosis. Tests came back inconclusive. That year had been particularly tough for Tracy. She had changed jobs, her stepfather died and she got divorced. Again, she attributed her sickness to stress.
Between 1991 and 1993, she was hospitalized 26 times for vomiting, dehydration, gastrointestinal problems and other ailments. But no one knew what was making her sick.
In 1994, Tracy visited Dr. Bernard D. Raxlen, a neuropsychiatrist who treats Lyme patients in Connecticut, and he diagnosed her right away. "He said, 'I don't care what the tests say, you have Lyme disease,'" she said. "I was so relieved to know I wasn't crazy, that I wasn't making this up. People just thought I was a chronic complainer."
That year, two Western blot tests, blood tests that measure antibodies, confirmed the doctor's suspicion; Tracy had Lyme disease. Raxlen immediately put her on a 12-week course of an antibiotic called Rocephin, which was administered intravenously through her right arm nearly every day. The treatment was considered aggressive and experimental.
"He said, 'Let's give it a try. You've been sick a long time. We will take it as it comes,'" Tracy said.
Getting proper diagnosis and treatment is particularly tough for those whose illnesses do not follow the normal course, meaning they do not recall finding ticks on their bodies and they did not notice the tell-tale, bull's-eye-like rash. Lyme experts report that fewer than 50 percent of patients recall a rash and fewer than 50 percent remember being bitten by a tick.
Tracy fits both descriptions. She suffered for 11 years before doctors could tell her exactly what was making her sick. Her illness was mistakenly diagnosed as hepatitis, chronic fatigue syndrome and depression, and was written off by others as a concoction of her own imagination. "If you are told for long enough that there is nothing wrong with you, you do start to believe it, even though you know somewhere inside of you that it is not true," she said.
Lyme disease manifests itself differently in each patient. For Tracy, it caused neurological damage, joint pain and, perhaps most seriously, gastrointestinal problems. She suffers from frequent bouts of vomiting and abdominal pain, and was hospitalized twice this summer for a bleeding stomach ulcer. "Imagine you are in bed and you have the worst flu possible," she said. "Then add migraines, seizures, the mind problems, no sleep. Think about having that every day with no end in sight, no cure."
The disease has cost Tracy her career as well as a family. She had a hysterectomy in 1989 after doctors discovered that both her ovaries were severely damaged. Her fatigue grew so great over the years that she had to stop working.
Even though she was feeling sick, Tracy embarked on a modeling career in the early 1990s. She had done some modeling before and thought a return to it might help reenergize her. But that, too, was spoiled by Lyme disease.
One day in 1992, Tracy was one of several women modeling wedding dresses in New York for designer Vera Wang. Feverish and exhausted, she was standing in high heels at the top of a spiral staircase when she realized that she was too sick to continue. She told Wang that she had to leave. She rushed out of the city, took the train back to her house and was hospitalized three days later. Sometimes, Tracy said, she forgets that she is sick and tries to do too much.
"It is that mentality that a lot of Lyme patients have. They try to hold onto the idea that everything is normal," she said. "It's that whole denial of 'Oh, I'm going to beat this.' ... You need to be realistic about it but you don't need to walk around with a black cloud over your head."
Tracy moved to Newport in 1997, and by 1998 was feeling significantly better. She attributes the improvement to a healthy diet, regular exercise, and a good mix of antibiotic treatments and homeopathic remedies for Lyme disease. She was eating well and sleeping regularly.
She relapsed in 2001, after trying to push herself too hard, she said. The past year has been particularly difficult, as her disease has caused her stomach problems to worsen. She is currently taking anti-reflux medications to ease her vomiting. Money has been a problem in Tracy's fight against Lyme disease. In 1994, she lost her medical coverage after missing a payment to the insurance company. Since then, she has been unable to find an insurance company that would accept her. She used her savings to pay in cash for her medical visits and treatments, but now her savings have been depleted. The expenses, she said, are mounting.
In the late 1990s, Tracy had hoped to adopt a child, her only option for a family after having a hysterectomy. That plan faded as her medical debts grew. "Dollars that would have gone to adopting a child went to medical bills," she said.
John MacGowan, who has known Tracy since kindergarten, said it has been difficult to watch his friend's deterioration. The two grew up together in Manhasset, N.Y., and have kept in contact since then. They live near each other now in Newport, and Tracy often calls on MacGowan when she needs help. MacGowan said Lyme disease is worse than most people realize; his friend is the proof. "Kim is a statistic that many people don't care to respond to," he said. "She is slipping through the cracks of the medical system.
Lyme disease is a real misnomer. No one is willing to give it much credence. It is a very debilitating condition that she is in. I don't think she is ever going to have a normal life."Speaking out In the past, Tracy belonged to a Lyme disease support group at Newport Hospital. Richard Laferriere, who runs the support group, said Tracy was a source of support and information for those who came to the group. Members looked to her for help, he said. Some still do. Tracy said she often takes phone calls, sometimes when she is sick in bed herself, from people who are ill.
Last year, Tracy and Laferriere, who also suffers from Lyme disease, banded together with several others to form the Lyme Community Coalition of Rhode Island. The group helped aid former Gov. Lincoln Almond's Commission on Lyme Disease and Other Tick-Borne Illnesses, which at the time was conducting public hearings to address the myriad problems faced by those who are sick. Tracy, Laferriere and dozens of others testified about their quests for accurate diagnosis and troubles with insurance carriers, the shortage of trained doctors, inadequate treatments and the lack of public knowledge about tick-related diseases. Tracy was even interviewed by a TV crew.
The hearings resulted in bills to ensure medical coverage for those who require antibiotic treatments longer than the previous standard of one month. This year, the Lyme Disease Association also established a Rhode Island chapter. And this past August, U.S. Sen. Jack Reed, D-R.I., announced that the University of Rhode Island would receive $100,000 for a community-based tick control program in Narragansett.
Another sufferer of chronic Lyme disease made national news recently. Newspapers around the country ran stories about novelist Amy Tan, perhaps most known for her book "Joy Luck Club," and her struggles with late-stage Lyme disease. In an August article in the Washington Post, Tan explained her symptoms, which include headaches, memory loss, joint pain and hallucinations. Tan said in the article that she believes she has had the disease for about 20 years.
While Tracy says she is bolstered by news of the progress that is being made for those with Lyme disease, she acknowledges that there is much more work to be done to help those who are sick. "Lyme patients are shunned in terms of society," she said. "That is the toughest thing with this disease. It gives you such isolation."
While some have been dismissive of her illness, others have been there when she really needed them, she said. They have delivered food when she was unable to leave the house, and have even taken her into their homes when she was too sick to care for herself. "You don't want to be a burden (on people). You don't want to have to ask people for help," she said. "The friends that I have, they are there for me all the time. I have lost people throughout the years who haven't been able to deal with it."
MacGowan said his friend is fighting in her own way, with a strong but quiet spirit. "She is affected but she is holding up a very brave constitution. It is affecting her every day." Tracy is saddened when she thinks of the many others who are sick like her, particularly when she thinks about children with Lyme disease. She urges people to learn about the disease and to educate themselves on what to do should they find ticks on their bodies. "Be aware," she said. "You need to know what to do if you find a tick. Be your own advocate if something doesn't feel right. Rather than wait to see if a test comes back positive or negative (for Lyme), get on antibiotics and do it for two to four weeks. I'd rather see people be safe than sorry."
Currently, Tracy is receiving no regular medical treatments, but she may consider beginning a new intravenous antibiotic sometime in the fall. In the meantime, she is coping with the pain, the symptoms and the stress as best she knows how. She sometimes practices meditation, which she said helps to calm her thoughts. She is staying with family on Cape Cod until she is feeling strong enough to return to her Newport apartment.
Medical experts say Lyme disease is rarely fatal. But Tracy is aware that the complications of the illness can be deadly, and she sometimes thinks about whether she will win the battle. Those thoughts have been in her mind this summer, particularly during her two hospital visits. "I don't want to live my life looking at death or thinking about death," she said. When asked whether she thinks she will die from the effects of Lyme disease, Tracy pauses and bows her head. Her voice softens and tears form at the corners of her blue eyes. "Deep down? Yes. But not today. Not today."