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Pervasive infection, elusive diagnosis
By ROBIN LORD
MASHPEE - Angie Binnall drove her three children to doctors around the state trying to figure out what was making them so sick. She finally found the answer from a physician right in her own backyard.
Falmouth infectious disease specialist Dr. Samuel Donta last year explained what such specialists as endocrinologists, gastroenterologists and neurologists could not. He told her that her three children - Christopher, 19, Nicolas, 15, and Lynsey, 11 - were all suffering from chronic Lyme disease infections.
Months later, Binnall herself was diagnosed with the disease, and Donta now suspects she may have had it for years and may have passed it on to her two youngest children during pregnancy.
Rounding out the family is Binnall's husband, Alan, who was treated for possible Lyme disease from a tick bite on his neck in January 2004.
The family members have suffered from numerous symptoms, ranging from extreme fatigue and joint pain to mental fog and skin disorders. Today, after long-term antibiotic treatment and thousands of dollars out of pocket, all but Nicolas are doing better, although there is still a long way to go, Binnall said.
Lyme disease is a bacterial infection transmitted by the tiny deer tick. The incidence of Lyme disease in Massachusetts is three times that of the rest of the country, and Cape Cod and the islands have the highest incidence in the state.
The Binnalls' experience highlights the difficulty many chronic Lyme disease patients experience in their quest to get the correct diagnosis and effective treatment. Many doctors are reluctant to identify Lyme as the cause of an illness that also mirrors conditions like chronic fatigue syndrome, Epstein-Barr virus and even multiple sclerosis and lupus.
And many doctors also continue to follow the guidelines set up by the American Academy of Pediatrics and the Infectious Diseases Society of America, which discourage diagnosis of Lyme without a positive laboratory test, the characteristic bull's-eye rash or a tick bite followed by the classic Lyme flulike symptoms.
The two associations also advise physicians not to prescribe long-term use of antibiotics for Lyme sufferers - advice that discourages insurance companies from covering the treatment.
Doctors who are more liberal in their diagnosis of Lyme and in their treatment with long courses of antibiotics run the risk of insurance companies refusing to pay for the treatment and drugs.
''When places like the Infectious Diseases Society of America question the existence of chronic Lyme, the third-party payers hop on that,'' Donta said.
Donta, a retired Boston University professor of medicine, was a member of the society's committee that formulated the Lyme disease guidelines. He said he refused to sign the final draft of those guidelines.
About 30 Lyme sufferers from across Massachusetts told of their difficulties getting treatment in this state despite that fact that some of the best medical institutions in the country are located in the Boston area. They spoke Friday in Ayer at a forum sponsored by State Rep. Peter Koutoujian, D-Waltham, chairman of the Joint Committee on Public Health. He told the group he was moved to hold the meeting after hearing from many constituents.
Christopher Binnall could have been one of them. When he was going to Mashpee High School,! where he was a musician, athlete and scholar, he came down with a ''horrendous meningitislike'' illness in September 2002. That, Angie Binnall said, is when her family's ''whole world fell apart.''
Doctors were baffled and could not give her any explanation, other than a guess that it might be Epstein-Barr, which is characterized by fatigue and joint pain.
A test for Lyme at the time came back negative, but Donta told her the test is imperfect and can return false results if done too early or too late in the Lyme infection.
Unlike the test for HIV, the one for Lyme disease does not check the actual levels of the infection in your system. Instead, it looks for the presence of antibodies your body is producing to fight the infection.
Christopher went from being a varsity football player to ''walking like an 80-year-old man,'' and having trouble getting out of bed, his mother said. And he ! kept getting worse. Doctors finally decided he was suffering from chronic fatigue syndrome, but Binnall was unconvinced.
''We went through the whole thing. Was it something in our house, in the air conditioning?'' Binnall said. ''I changed the kids' sheets every day.''
Binnall went to Donta on the recommendation of an immunologist. Christopher saw him for the first time in May 2004 and, after an exam and interview and a very weak positive Lyme disease test, Donta began treating him with oral antibiotics, which he still takes.
His symptoms improved enough for him to begin college last fall, and his mother said he is about 80 percent better today.
After Christopher's diagnosis, Binnall began to look more closely at her other two children's medical issues. Nicolas, the 11-year-old, was born prematurely after a difficult pregnancy and has battled asthma and allergies all his life, she said. Since ! 2002, he has been debilitated by problems, including a severe sleep disorder.
Lynsey started showing signs of illness in fall of 2003. Her symptoms were similar to Christopher's, including the fatigue, joint pains and inability to focus mentally.
In utero transmission
New Haven, Conn., pediatrician Dr. Charles Ray Jones, who treats more than 7,500 children with Lyme disease from around the world, including the Binnall children, said research has shown that the Lyme spirochete can be passed from mother to child in utero.
Donta prescribed long-term oral antibiotics for Nicolas and Lynsey. Lynsey has improved, but Nicolas has not, Binnall said.
Binnall has learned there is controversy even within the medical community over whether there is such a thing as chronic Lyme disease. Doctors disagree whether co-infections from other tick-borne illnesses like babesiosis, ehrlichiosis and barton! ella can play a part in what has up until now been known as Lyme disease alone.
Donta is not convinced that other tick infections can cause chronic conditions. So, in addition to Donta, Binnall now takes her children to Dr. Jones in New Haven. During an interview last week, he said about 60 percent of the children he sees have co-infections with Lyme.
Jones said he finds it amazing that more than two decades after the Lyme spirochete was identified and the Lyme infection process was finally understood, there is still so much controversy over how it is diagnosed and treated.
''It all boils down to a concept of Lyme that doesn't fit with what it actually is,'' he said. ''A lot of doctors don't think independently and give (patients) three weeks' standard treatment, or think they have other diseases.''
A 'criminal' approach
Jones, 76, who has been in practice since 1965, calls the American Academy of Pediatrics' and Infectious Diseases Society of America's stance on how to diagnose and treat Lyme disease ''criminal,'' based on the thousands of cases he has seen of children who come to him with a range of conditions that clear up after long-term treatment with antibiotics - sometimes as long as a decade.
He told of an 8-year-old boy from Hawaii who first came to him at age 5 as a weak child who did not speak and appeared to be mentally retarded or autistic. Today, after three years of antibiotic therapy, the child talks fluently and is ''extremely bright,'' he said.
Jones contends that long-term antibiotics tailored to the person (there are more than 300 strains of the Lyme spirochete) is necessary to finally eradicate the stubborn bacteria if they have embedded themselves into the cells of the body.
Among those who fall on the side of the more conservative treatment for Lyme disease is Cape Cod Hospital infectious disease specialist Dr. Alan Sugar. He said there is no scientific evidence that an active Lyme infection is responsible for the chronic complaints some doctors ascribe to long-term Lyme. He said there is also no evidence the Lyme bacteria can ''hide'' in the tissues of an infected person.
Sugar said the subject has ''turned into more of a religion than a medical issue'' for some, and he said to treat someone for months and years ''makes very little sense.''
But Donta said the medical research community has not done the right kind or amount of scientific testing to solve the question of whether chronic Lyme exists and is cured by long-term antibiotics. He said he and other doctors who diagnose and treat chronic Lyme have much circumstantial evidence that gives them credibility.
''The proof is in the pudding,'' he said. ''Patients are improving'' with long-term antibiotic treatment.
A National Institutes of Health-funded study done by Dr. Mark Klempner of Boston University School of Medicine and published in the New England Journal of Medicine last year showed no difference between long-term antibiotic therapy and placebos for patients with long-term Lyme. But Donta claims the treatment trial period was too short and the wrong type of antibiotic was used..
State health department infectious disease expert Dr. Alfred DeMoria said it is not his department's role to take a stance on the diagnosis and treatment of Lyme disease. He said clearly there are people with late complications of Lyme, but the controversy arises over who does and who doesn't have them.
''From a public health standpoint, arguing these cases doesn't promote the public health focus of preventing Lyme disease,'' he said. '! 'The more we do to prevent it in the first place, the better off we'll be.''
Robin Lord can be reached at firstname.lastname@example.org.
Lyme Disease Prevention
Reduce conditions in your yard that favor deer or mice populations by .mowing the grass short and removing brush.
Wear light-colored clothing when in tick habitat and check for ticks afterwards.
Use tick repellent, such as DEET, (not on children) or permethrin on exposed skin.
If you find a tick on you, use fine-point tweezers to grip as close to skin
as possible and pull straight out.
Source: Massachusetts Department of Public Health
(Published: July 12, 2005)
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