Sick and tired of being ignored, misdiagnosed
Many North Shore families have Lyme disease, and are having a hard time finding help
By Bella English, Globe Staff | June 1, 2005
HAMILTON -- The basket sits like a centerpiece in the middle of Paula Gesmundo's dining room table. But instead of spilling over with ivy, it is piled high with bottles: antibiotics, antiprotozoans, nutritional supplements, stuff for the stomach. It is a family basket; everyone knows which medication to take, and when to take it.
Kriste, 14, runs down the list. ''I'm on a nutritional supplement; zithromax, an antibiotic; malarone, which is an antiprotozoan; something for my G.I. [gastrointestinal tract]." She arrives at the pinkie finger of her right hand and frowns. ''And something I can't pronounce."
Kriste, her four siblings, her mother, and the family dog have all been diagnosed with Lyme disease, a infectious disease that is caused by microscopic bacteria carried by deer ticks and that can be difficult to diagnose and treat. Only the father, James Brao, seems untouched by it. He's a pilot for Delta Air Lines and travels a lot.
''I cannot tell you what has become of our lives," says Gesmundo, 43, who practiced law in Boston and Washington before the children came along. These days, in between doctors' appointments for them all, she sells real estate.
The family is part of a cluster of Lyme disease cases that has infested North Shore towns such as Hamilton, Wenham, and Ipswich. According to a study published in the New England Journal of Medicine in 1989, nearly half of the residents of Argilla Road in Ipswich had been infected with Lyme disease.
Dr. Alfred DeMaria Jr., the chief medical officer for the state Department of Public Health, held a public hearing in March at Ipswich Town Hall. The forum was called by state Representative Brad Hill of Ipswich, who said he grew concerned after a large number of constituents complained that doctors and state health officials were ignoring the disease. They want more aggressive diagnosis and treatment. They want more public awareness and education. So many people came to testify -- many of them sporting intravenous antibiotic lines -- that the meeting was moved to a larger space. Still, it was standing room only.
One by one, they cited instances of misdiagnoses, of doctors who told them to go home and take aspirin, of having to go out of state and pay out of pocket for what they call ''Lyme literate" doctors. They told of children who were incorrectly diagnosed with mononucleosis, attention deficit disorder, and learning disabilities. One woman said almost every family on her street had someone infected with tick-borne Lyme. Another described her husband, who went undiagnosed for too long. ''He was an executive, and he could no longer find his way to the gas station," she said. One family said it spends $2,800 a month in antibiotics.
As they tossed off words like ''pathogens," ''spirochetes," ''co-infections," ''Western Blot tests," and ''PIC lines," it became clear that those testifying were more than casually acquainted with Lyme disease. Nearly all of them criticized Massachusetts doctors for failing to test for, diagnose, and treat Lyme and said they rely on doctors in Connecticut and New York for treatment -- though Boston boasts some of the world's best hospitals.
Lyme disease remains a controversial, clinical diagnosis, with false negatives and false positives, dozens of physical and neurological symptoms, and a penchant for mimicking other maladies such as fibromyalgia, Parkinson's disease, arthritis, multiple sclerosis, and Lou Gehrig's disease. Though some people develop a bull's-eye rash after being bitten by a tick, many do not. Complicating matters is the issue of co-infection -- many of those with Lyme also suffer from other tick-borne illnesses such as babesiosis, ehrlichiosis, and bartonella.
DeMaria acknowledges that Lyme disease is a ''huge problem" in Massachusetts, one of the most prevalent infectious diseases, and one of the most underdiagnosed. ''Ticks are everywhere," he told the crowd. ''Lyme disease is everywhere. We know it's getting worse and worse, and there are significant problems in diagnosing, preventing, and treating."
Paula Gesmundo knows it all by heart: the rashes, ear infections, headaches, stomach and joint pain, the fatigue, fevers, rashes, cognitive and mood issues. Her sons James, 12, and David, 8, had brain scans at Children's Hospital in March that revealed inflammation and blood deprivation because of bacteria caused by Lyme disease. James suffers debilitating migraines along with mood swings. Last year he began having problems with simple homework that was usually a snap for him. Sometimes he comes home from school and takes a four-hour nap. David has periodic tremors and some cognitive problems. Both he and his brother Stephen, 9, go to the school nurse every day for a dietary supplement to ease their stomachaches.
Though it took several tries to get a doctor to diagnose and treat her family's Lyme disease, their dog fared better. Resy, a year-old German shepherd, was diagnosed by the vet in short order and put on an antibiotic.
All of the children had serious vomiting and reflux issues at birth, and Gesmundo wonders whether she passed along Lyme disease in utero. Looking back, she can see her own symptoms as a teenager; she wonders, too, whether Lyme is responsible for her four miscarriages, but her doctors at the time failed to test her. Still, each of her children has been bitten by ticks on the North Shore, where Lyme and the insects are endemic. Gesmundo believes she and her children have been reinfected by subsequent tick bites.
Various doctors told her that her children had arthritis or mono -- one even suggested ''growing pains" -- and prescribed aspirin. When they finally were diagnosed with Lyme, she said, they were put on antibiotics for two weeks. The symptoms faded but returned, worse, when treatment stopped. One son had enlarged lymph nodes, night sweats, insomnia, nausea, and periodic loss of vision. So worried were Gesmundo and her husband that they moved him into their bedroom so they could monitor him at night
Finally she learned of a ''Lyme literate" doctor in New Haven. ''He listened to me, and he listened to my son. He took more sensitive tests." Those with Lyme disease call him a saint; to doctors who believe the disease is overdiagnosed and overtreated, he is, in his own words, ''the great Satan."
Dr. Charles Ray Jones, 76, has more than 7,000 pediatric Lyme cases from every state and country in the world, including 400 families from Massachusetts, he says. He believes the federal guidelines for Lyme disease are too rigid and finds the test favored by many doctors to be unreliable. His preferred treatment is to keep a child on antibiotics for at least two months after all symptoms have disappeared -- in extreme cases, this can mean years of treatment.
''Lyme is very, very complex," he says. ''It's a horrible disease to have, and it's a challenging disease to treat."
On the other side of the bitter Lyme debate is the Centers for Disease Control and Prevention, the National Institutes of Health, and many doctors and insurance companies who believe in a standard set of symptoms and treatment, which includes a shorter course of antibiotics. Doctors in this camp say long-term use of antibiotics can be dangerous.
Dr. Allen Steere, widely considered the guru of Lyme disease -- he identified and named the disease for the Connecticut town where it was discovered in the mid-'70s -- is a particular target of the patients who seek ''Lyme literate" doctors. Steere, director of rheumatology at Massachusetts General Hospital, has written and lectured extensively about Lyme. He and other doctors have said the disease is overdiagnosed and overtreated. He favors a short course of antibiotics, and Lyme patients and advocates feel his position has influenced other doctors and encouraged insurance companies to curtail payment for long-term treatment. Steere, who has been stalked and hectored by Lyme patients, declined to be interviewed by the Globe.
Many patients interviewed by the Globe say their insurance companies make them pay large deductibles before out-of-network benefits kick in -- if they kick in at all. Blue Cross and Blue Shield of Massachusetts, for instance, provides full coverage for treatment of Lyme disease by network providers. But some people pay a higher rate for out-of-network coverage, while others have no such coverage.
'It's not a mystery' Gesmundo says that once she found her way to ''Lyme literate" doctors, her family began to improve, bit by bit. She and her kids also see Dr. Bernard Raxlen in Stamford, Conn., a three-hour-plus drive from their house. Raxlen says he has treated more than 3,000 Lyme cases in the past 15 years, many from out of state. ''Tell me why Boston and New York, two megacenters of medicine, have patients who come here to Connecticut to see me, a neuropsychiatrist in Stamford. I'm puzzled as to why Lyme continues to be such a controversy. You observe the patient, you treat the patient, the patient improves, you've done your job. It's not a mystery."
Raxlen also notes the irony of doctors who will treat acne for months or even years with antibiotics. ''They don't blink an eye. But God forbid you do that for Lyme for even three months; you're ready to be tarred and feathered."
Gesmundo reckons she pays $2,000 a month in prescriptions, supplements, tests, and office visits for various doctors that her insurance will not cover. For their part, insurance companies say that the medical establishment does not agree on whether long-term treatment is warranted, or even safe.
''This is a physically and financially devastating disease," says Gesmundo, who attends a monthly Lyme disease support group in Danvers. ''I have to pick and choose which kids get treatment."
So worried was she about her children that she tended to ignore her own symptoms. But last fall, when she began having high blood pressure, headaches, hives, ear and chest pains, vertigo, fatigue, and memory loss, she requested another Lyme test (two previous ones had come out negative). ''The third test revealed a raging case of Lyme disease that the doctor said I'd had two or three years." After two days on an antibiotic, she was much improved, and she has remained on an ''antibiotic cocktail" since then.
Progress has been slower for her children, who have co-infections that often come with Lyme. ''I am looking for a quality of life that allows my kids to achieve in school or in athletics and relationships and other important facets of life. But having said all of that, they're still sick."
Just the other day, Gesmundo's daughter Mary Delilah, 6, was bitten by a tick again. Her father removed the insect shortly after she came indoors, and it was not deeply embedded. ''Spring," says her mother, ''makes me nervous."
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