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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.




July 12, 2005

Pervasive infection, elusive diagnosis
By ROBIN LORD
STAFF WRITER

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.


Difficult diagnosis

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.


Sufferers' forum
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 bartonella 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.


Circumstantial evidence

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.''
+

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