York teen suffers for years before Lyme disease diagnosed
KATHY STEVENS The York Dispatch Article Last Updated: 05/29/2007 10:45:44 AM EDT
No one believed her. They figured she was making it up for one reason or another.
She wanted attention. She wanted to skip school. She was lazy.
But those things weren't true. Nicole Lecrone wanted help.
She wanted the pain to subside, the muscle aches, the sharp stabbing pains in her stomach.
"It felt like falling on nails sticking up through a board, like railroad ties," Nicole said. "Doctors would ask on a scale of one to 10 how bad did it (stomach) hurt."
Sometimes she ranked the pain at 22, sometimes 78, but rarely between one and 10. The doctors didn't know what was wrong. She was 12 years old in 2002, but it would be nearly two years before she was diagnosed and treated for Lyme disease.
During that time Nicole was smack in the middle of a medical controversy that she and her mother say hindered treatment and cost her years of youth.
Lyme is caused by a bacterium, or spirochete, called Borrelia burgdorferi and transmitted to humans by infected blacklegged ticks, or deer ticks.
Deer carry the ticks from region to region, but the ticks are found in urban, suburban and rural areas on mice, birds and other host animals. Ticks are tiny and often go undetected. People are instructed to conduct "tick checks" after being outdoors, particularly in high-risk areas such as in tall grass or woods. And health officials remind people to look for a bulls-eye rash associated with Lyme, which is a sure sign of a tick bite.
Early detection best: They say early detection is the best defense against developing what some say is "chronic" or "post" Lyme disease. It's a condition that some people like Lecrone living in the Northeast and mid-Atlantic regions complain of. They say blood tests too often give false negatives and that too many area doctors aren't "Lyme literate."
That claim is more important now than ever as cases of Lyme increase. Pennsylvania ranks third in the nation for its rate of Lyme disease, with the most cases reported in the southeast region of the state.
Still, the majority of researchers and infectious disease specialists, and the Centers for Disease Control and Prevention, say Lyme is easily diagnosed and treated by a three- or four-week dose of oral antibiotics.
Doctors say if aches, fever and malaise don't subside, a month-long dose of stronger antibiotics should eradicate the bacteria, or spirochetes, that travel through the bloodstream and settle in organs.
The controversy isn't early detection or early treatment, but how to treat Lyme that isn't detected until much later.
A minority of doctors push for a long-term course of antibiotics or antimicrobials for chronic Lyme sufferers. But too often, this group of Lyme sufferers are not receiving adequate treatment.
So says Dr. Charles Ray Jones, who during his 45-year tenure as a pediatrician has treated at least 10,000 children.
Expert by default: Jones is known internationally as a Lyme specialist, a title he obtained by default in the late 1960s after he and his wife, Margery, moved from New York City to New Haven, Conn.
"There were so many children coming in with juvenile rheumatoid arthritis," Jones said during a telephone interview. He later determined that while symptoms were similar, often they stemmed from Lyme disease. "I developed a knack for treating and understanding the disease."
Back then, researchers had only begun to define the disease and related symptoms. The disease was named in 1975 after Old Lyme, Conn., where researchers saw numerous people with similar symptoms.
While Lyme is now widely recognized and tracked by the CDC, it still remains somewhat mysterious. Researchers have not determined exactly when the infection begins, and it affects people differently. Jones says the bacteria can enter the body when the tick bites, or as it attaches.
He says the CDC lists two legally accepted standards of care for Lyme: antibiotics or antimicrobials delivered orally or intraveneously. But he says most doctors don't explain or offer both treatments. He recommends patients demand care, and if doctors balk the patient should explain that should the condition worsen, the doctor will be held liable.
Incidence up: Appropriate treatment has become more important in recent years as the incidence of Lyme continues to rise, health officials say. In the past decade, the disease has spread west across Pennsylvania. The Health Department recorded 2,589 cases in 1996 statewide compared to 4,042 in 2005. In York County, the 1996 tally was 23 cases; 386 were recorded in 2005.
Those numbers made York County the fourth riskiest in the state in 2005 behind Bucks, Montgomery and Chester counties. Chester topped the list at 630 cases of Lyme disease, according to the state health department.
The CDC lists Pennsylvania as one of 12 states nationwide that account for 95 percent of reported cases of Lyme; it estimates that incidence rate is 8.2 cases per 100,000 people.
Dr. John Manzella, chief of infectious diseases at York Hospital, said treatment is available. As for controversy, he says it stems from known medical practice and guidelines. He agrees with Jones that infused antibiotics are useful when dealing with Lyme if oral therapy fails or if there are central or peripheral nervous system symptoms.
But he says there is scant research to support benefits of long-term intraveneous treatment.
"There are a number of respected physicians who take a different approach," Manzella said about doctors such as Jones who say long-term treatment is beneficial. "I say, show me the evidence."
False negative possible: He says he's not sure about chronic Lyme, but like Jones, Manzella says the disease can worsen existing conditions. As for diagnosis, Manzella says catching Lyme early is the best defense, that antibiotics most often kill the bacteria. Manzella does say that the blood test, if taken too early, can result in a false negative.
That's why Jones recommends relying heavily on clinical diagnosis. Jones said determining whether a person is "cured," that is if all the spirochetes are killed, depends on the elimination of all symptoms for at least two months.
That hasn't happened for Nicole. She met Jones in 2004 after testing positive for Lyme. By then, her mom had compiled research on the disease and doctors who "think out of the box," as Jones says.
Nicole and Jennifer made the 270-mile drive from their Spring Grove home to his office. Inside, they saw a 7-by-4-foot corkboard adorned with children's faces, kids from all over the world. There were notes and cards from patients Jones has helped during the years.
Then they met him, the 6-foot tall 78-year-old whose professional attire is a two-piece jogging suit.
He listened to Nicole's complaints, but it seemed he already knew the problem.
"We walked in, and he knew every place that hurt," Nicole said. "It was nice to have a doctor that believed you were sick and not making it up. Other doctors were like, 'Oh, it's not Lyme, there's no Lyme around here.' They automatically assumed I was making stuff up."
First trip of many: When Nicole and Jennifer asked about the photographs, Jones told them some of the children's names. He shared their stories and said he'd do his best to help Nicole. That was the first of a dozen or so trips Nicole and Jennifer have made to see Jones.
He got in touch with Nicole's physician in York and worked out a treatment plan, which included intraveneous treatment for nine months. The Lecrones' health insurance didn't cover that treatment, but Jennifer and husband Dana Lecrone managed to pay some $30,000 for their daughter's care.
They nearly lost their rural home. Dana, a trucker, was gone most of the time, taking as much work as he could get. Backbreaking labor installing fence posts consumed his weekends. Nicole's oldest sister, 19-year-old Heather Lecrone, took a part-time job after school so she could buy Nicole's prescription drugs.
"We still owe her $6,000," Jennifer said.
Friends helped. Bikers held a poker run to raise money for the Lecrones.
Kelsey Lecrone, Nicole's 15-year-old sister, says she was scared Nicole would die.
Too often she'd seen her sister limp from pain and exhausted from too many sleepless nights. She knew, too, that Nicole told her mom, "I want to die. Just let me die."
These days, Nicole's case of Lyme is under control, but her eyes still well with tears when she talks about the worst of times before she was diagnosed, when no one believed her, when her closest friends questioned her.
She has good days and bad, but believes now she'll regain her life.
Now 17, Nicole says it's about time. Still, she's concerned for others who find themselves in the same predicament, that is, with a disease and the inability to obtain adequate treatment without fighting doctors, insurers and naysayers.
She says, "It's almost like the president has to get it for something to be done."
Legislation: Three proposals addressing Lyme disease treatments and education remain in state House and Senate committees. House Bill 798 and Senate Bill 722 would establish a task force to study Lyme disease and related maladies. The task force would comprise representatives of the state departments of health, conservation and natural resources, and the Pennsylvania Game Commission. The task force would monitor antibiotic therapies and misconduct proceedings.
HB798 was referred March 19 to the Committee on Health and Human Services; SB722 was referred April 2 to Banking and Insurance. A third bill, Senate Bill 573, would provide Lyme disease education, prevention and treatment.
Tips: May is Lyme Disease Awareness Month in Pennsylvania, primarily because spring marks the beginning of the worst of the tick season.
Health-care professionals and entities advise parents that children and adolescents are particularly susceptible to Lyme because of time spent outdoors and in wooded areas. Adults also are advised to take precautions during outdoor activities.
Precautions advised include the following:
--- Be aware of and avoid tick habitats such as tall grass, bushes, brush and woods. Appropriate clothing for these areas includes long-sleeved shirt, hat and pants tucked into socks or boots.
--- Use bug or tick repellent that contains DEET.
--- Brush off clothing before going indoors. Once inside, remove and launder clothing; conduct a tick check looking under armpits and near the groin area.
--- Remove any unattached ticks; attached ticks may be removed with fine-point tweezers, being careful not to squeeze the body. Grasp the tick where its mouthparts enter the body and tug gently until it releases.
--- Save the tick in a covered jar of alcohol labeled with the date and location of where it was believed to have been acquired and contact the state health department.
--- Some bites result in an infected rash that resembles a bulls-eye. The expanding, swollen rash appears seven days to one month after the bite. Seek treatment immediately.
--- Symptoms most often include fever, chills and muscle aches. Symptoms evident in Lyme-infected children also may include gastrointestinal pain beneath the navel.
Sources: The Pennsylvania Department of Health at www.dsf.health.state.pa.us; International Lyme and Associated Diseases Society at www.LymeDiseaseAssociation.org. Additional information about the disease and area support groups are available at the Lyme Disease Association site.
-- Reach Kathy Stevens at 505-5437 or [email protected].
Posted by Geneal (Member # 10375) on :
Two things strike me as I read these Lyme disease horror stories.
First, Thank God for our LLMD's, Dr. Jones especially for children.
Secondly, I am so glad I had my children tested and am going after treatment.
Thanks for posting this.
It is a constant reminder of the toll of the disease as well as a reminder of the triumphs as well.