Patients: Lyme disease misdiagnosed, mistreated

Salem News - MA, USA
One by one they sat before a microphone in cavernous Gardner
Auditorium at the Statehouse yesterday, struggling to condense decades of
misery into three allotted minutes of testimony.

Few succeeded.

About 200 people descended on Beacon Hill for the Joint Committee on
Public Health's third and final public hearing on Lyme disease. For nearly
three hours, from as far away as Florida and Maine, they offered tear-filled
testimonials of how their lives were changed forever by the bite of an
insect no larger than a poppy seed.

"This is the first year I have been physically able to attend high
school because of a long struggle with Lyme disease," said Wenham teenager
Colleen Duggan, a senior at Hamilton Wenham Regional High School. "Instead
of playing sports, attending classes, joining clubs and going to proms, I
have spent my high school years with doctors, visiting nurses, IVs, blood
work and home tutors."

Unanimously, speakers laid at least some of the blame for their
ailments on a medical community deeply divided on the diagnosis and
treatment of Lyme disease and insurance companies they claim are reluctant
to pay for those treatments.

The disease, first identified in this country in 1975 in Lyme, Conn.,
is transmitted to humans and pets by deer ticks. Ticks infected with a
bacterium called Borrelia burdorferi pass the disease on when they bite
through the skin in search of blood.

Early symptoms of infection include a rash that may be in the shape of
a bull's-eye, joint pains, aches and fatigue. That's about all the agreement
there is on the disease.

Most doctors and researchers contend that, if caught early enough and
properly treated with antibiotics, Lyme disease is easily cured and leaves
no long-term symptoms. But a growing number believe the disease is more
pernicious, can infect many organs in the body and leave patients with a
lifetime of problems.

Those patients yesterday resoundingly claimed a wide range of
long-lasting symptoms of the disease, from uncontrolled rage, memory loss
and inability to focus to nausea, debilitating fatigue and cardiac problems.

They also said ticks are often infected with other sicknesses they
transmit along with Lyme disease, including babesia, a tick-borne illness
similar to malaria.

Speakers from Massachusetts also testified they had been unable to
find local doctors willing to accept their suggestions they had Lyme
disease, and they were forced to make appointments with physicians in
Connecticut, New York or Pennsylvania to get relief.

"No one should have to leave Massachusetts to find accurate testing
and treatment," said Linda Putur of Hamilton.

Putur's husband, Clark, died Oct. 15, 2004. The couple became sick in
2002, and in May of 2003 doctors at Massachusetts General Hospital
attributed Clark Putur's symptoms to amyotrophic lateral sclerosis, or Lou
Gehrig's disease. Putur's death certificate listed his cause of death as
both ALS and Lyme disease, Linda Putur said.

"As we approach the one-year anniversary of Clark's death, it is with
hope that our story can help create change in this state," she said.

State Rep. Brad Hill, R-Ipswich, was a leader in calling for the
legislative hearings. He had two questions for the committee yesterday:

"How can Massachusetts be a leader in the medical world and not be
able to diagnose Lyme disease?" he asked. "How can Massachusetts be a leader
in the medical world when its citizens are forced to cross state lines to
get proper treatment?"

Difficult choices

Putur's assertion that Lyme disease mimics ALS, multiple sclerosis and
Parkinson's disease was echoed by numerous speakers. Several testified
they'd not only been told they had MS, they'd been given steroids to treat
it. There is concern among patients and physicians that steroids, which
suppress the immune system, are a dangerous prescription for an infectious
illness such as Lyme disease.

Linda Putur's treatment with antibiotics was more successful than her
husband's, and her disease went into remission last May. But she said in an
interview yesterday she feels symptoms returning, creating a problem other
speakers mentioned frequently yesterday.

"Do I go to Pennsylvania and lay out all that cash, on a limited
budget?" she said. "That's what I struggle with."

But she's not willing to gamble her children's health.

"We have an appointment tomorrow for blood work in Dr. Jones' office
in New Haven, Conn.," Putur said in her testimony. "I am having both
children tested."

Dr. Charles Ray Jones was cited by many speakers yesterday as a "hero"
in the field of pediatric Lyme disease treatment. It was the stories of
children, no matter how old, struggling with the disease that were the most
dramatic moments yesterday.

Salem's Doris Gilberg said her 42-year-old daughter is house-bound and
bankrupt, unable to sleep at night or remain awake in the day, and
hyper-sensitive to light, sound and smells. She and her husband have had to
dip into their retirement savings to care for their daughter, she testified.

Janice Urbanski of Boxford said her son Christopher, 9, told her three
years ago the only thing he wanted from Santa for Christmas was to get his
memory back.

"It breaks your heart," Urbanski said.

And one of the younger speakers summed up what the audience hoped
would come out of the public hearings - quick action.

"Please don't leave this problem to my generation to solve," Duggan
said. "We will if we have to, but far too many people will become sick and
have stories like mine if you don't act now."

What's next?

Patients yesterday told the Joint Committee on Public Health they hope
three things will come from their testimony:

* Bay State doctors will be told they must comply with the Centers for
Disease Control instruction that Lyme disease should be diagnosed by its
symptoms, not blood tests. Speakers said too many doctors won't do that,
despite the fact that the most common blood test for Lyme disease is known
to be only 60 percent accurate.

* Insurers will be forced to recognize the extent of what some
speakers called an "epidemic" and pick up more of the cost of treatment.

* Doctors will get more education about the whole range of symptoms
the disease can produce, to ensure earlier diagnosis. Early treatment is the
single best way to prevent long-term health problems, they said.

Fall warning

With fall coming on and leaves dropping, several people attending
yesterday's hearing said it's vital to keep kids out of leaf piles, a
favorite hiding spot for deer ticks. They also underscored the importance of
checking the bodies of anyone who has been out in any area where ticks might
be present from head to toe.

What is Lyme disease?

* An infection caused by the bacterium Borrelia burdorferi that is
passed to humans (and pets) by infected deer ticks. The disease is prevalent
in areas with high deer populations, including the North Shore.

* Initial symptoms include a rash, often in the shape of a bull's-eye,
at the site of the bite. The rash usually appears one to two weeks after
infection and lasts three to five weeks.

* The rash is usually accompanied by flu-like symptoms, including
joint pain, chills, fever and fatigue.

* Untreated, the disease can leave patients with severe headaches,
arthritis, cardiac abnormalities and mental disorders.

* The symptomatic rash will appear in 90 percent of all infections and
is the most conclusive early symptom. Blood tests during the first 30 days
of infection are unreliable.

* If caught early, the disease can usually be treated with oral
antibiotics. In later stages, intravenous antibiotics may be prescribed.

* If you're going into areas where ticks may be prevalent, spray your
skin and clothing with products containing DEET, according to the
manufacturer's instructions. Ticks usually attach themselves to legs or
feet, then climb upward. The back of the knee, groin, navel, armpit and nape
of the neck are favored spots, and the entire body should be checked after
returning home.

* Symptoms that would now be diagnosed as Lyme disease first appeared
in Europe in 1883. It got its name after it was identified as the source of
an outbreak of juvenile arthritis in Lyme, Conn., in 1975.