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The data and information presented in this web site are presented in good faith and believed to be accurate. Any and all liability for the content or any omissions including any inaccuracies, errors, or misstatements in such data or information is expressly disclaimed. The web site is compiled for the sole purpose of informing community members of resources and information pertaining to Lyme Borreliosis Disease and its coinfections.
The Canadian Lyme Disease Foundation, Directors and members are not liable for any direct or indirect damages or any damages whatsoever resulting from loss of use, data or profits, whether in an action of contract, negligence or other tortious action arising out of or in connection with the use or performance of information available from this website.
Consult a qualified Lyme ( Borreliosis ) Disease literate doctor for medical advice if Lyme Disease is suspect.
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2003-12-28
Researcher tops roster of Lyme experts
By Robert Miller
THE NEWS-TIMES
When Dr. Steven Phillips talks to groups about Lyme disease, he doesn't use
rhetoric. He uses research papers.
"I don't like to speak in non-research terms,'' the Ridgefield doctor said.
But by the end of his presentation, the data Phillips has collected builds a
hard-to-refute argument - that the bacterial spirochete that causes Lyme
disease is a complex organism that can hide out on the body, and may be
involved in more illnesses than people think.
"He is extraordinarily thorough on the ways the spirochete can affect
humans,'' said Dr. Brian Fallon, an associate professor of medicine at
Columbia University and head of the university's Lyme Disease Research
Center.
"It's one of the strongest parts of what he does,'' said Dr. Richard
Horowitz, a Hyde Park, N.Y., internist who specializes in treating Lyme
patients. "He goes absolutely by material published in peer-reviewed
journals.''
And in turn, Phillips' gathering of citations leads to another conclusion:
that chronic Lyme disease isn't a matter of hypochondrical imagining. If the
spirochete can hide, it can also re-emerge to cause a host of arthritic,
neurological and cardiac problems.
"Those cases are in the minority,'' said Phillips of patients suffering from
chronic Lyme disease. "But they're not rare.''
When he's not doing his own research, Phillips sees such patients - often
patients with complicated medical histories who come to him after other
doctors have misdiagnosed their symptoms and after they've been ill for
years.
"He's one of the Lyme-literate doctors out there,'' said Maggie Shaw of
Newtown, one of the founders of the Newtown Lyme Disease Task Force, and a
Lyme disease patient herself. "He diagnosed me.''
"He has the ability to look at the disease both as a doctor treating
patients and as a researcher,'' said Pat Smith of the Lyme Disease
Association, a national group that promotes both Lyme disease education and
research. "He can see things in the lab, then see the bottom line as a
doctor in his office. He has the perspective of both disciplines and that's
one of his great strengths.''
"He's helped a lot of people,'' said Karen Gaudian of the Ridgefield Lyme
Disease Task Force, a group that Phillips advises. "We like him.''
For the coming two years, Phillips, 38, will be presenting his research and
his own conclusions about the disease on a much wider stage. He's been
elected president of the International Lyme and Associated Diseases
Society - a global gathering of physicians dedicated to researching the
disease in hopes of finding better ways of treating it.
"I get to have a say in the decisions made on Lyme disease,'' he said. "If
asked to, I'll speak about it.''
Among the important steps ILADS will take in the coming months, Phillips
said, will be to issue its own protocols for treating chronic Lyme.
"It will be a protocol that addresses all forms of the disease,'' he said.
And in January, Phillips said, he'll probably be asked to speak at a forum
held by the state Department of Public Health and Attorney General Richard
Blumenthal. In 1999, a similar forum helped convince the General Assembly to
pass legislation that guaranteed insurance coverage for state residents with
Lyme disease.
It's the issue of treating Lyme disease that's proved most contentious since
doctors first identified the disease in Old Lyme in 1977, giving it its
name. A few years later, they discovered the cause - a bacterial spirochete,
now named Borrelia burgdorferi - carried and spread by ticks.
Doctors now agree that Lyme disease - spread here by the bite of the
black-legged tick, also known as the deer tick - was identified in Europe a
century ago and is a world-wide ailment. In the United States, it's the most
common tick-borne illness. The Centers for Disease Control and Prevention
reported 23,000 cases of the disease in 2002, but doctors agree the disease
is probably underreported by a factor of 10. Connecticut has the highest
per-capita rate of Lyme disease in the United States, with about 136 cases
per 100,000 people.
The initial symptoms of the disease generally include a high fever, headache
and aching joints. Often, but not always, there's a rash that spreads from
the site of the tick bite. If treated promptly with antibiotics, people
usually get cured.
But if people don't get those antibiotics - and sometime even if they do -
the bacteria survives, then causes a host of symptoms: painful, swollen
joints, heart problems, memory loss, profound fatigue and a host of
neurological problems.
"Even if only 10 percent of Lyme disease cases cause chronic Lyme symptoms,
that's still a lot of people in the United States,'' said Horowitz, who is
ILADS's vice president.
Many doctors, including Phillips, have treated patients suffering from
chronic Lyme disease with a long-term course of different antibiotics,
sometimes delivered intravenously. Others doctors have sharply criticized
the practice saying it's expensive, ineffective and may actually harm the
patient.
"There's been two published studies on the issue,'' Fallon said. "One said
long-term antibiotics wasn't helpful. The other said it was. What they
mostly proved was that the questions you asked, the patients you studied,
the antibiotics you used, makes a difference in the research.''
Horowitz has treated about 6,000 Lyme disease patients over the years. He
said as the medical evidence grows on the illness, it's being recognized as
a "baffling'' disease.
Along with the persistent life of the spirochete - which has the ability to
change shape from a bacteria with a tail to a round cyst that can hide from
antibiotics in muscle tissue - Horowitz said many patients suffer from
co-infections because ticks can also cause diseases such as babesiois - a
parasitic disease - and ehrlichiosis, marked by a severe fever.
"It's a constellation of issues,'' he said. "It's not one thing or the
other.''
Making the disease even trickier to diagnose is that there is no good
laboratory test that can prove a person has been infected by Lyme disease
bacteria. Instead, doctors must test for antibodies the body produces to
fight the bacteria; many of these tests are generally viewed as unreliable -
the CDC's standards say a Lyme disease diagnosis must be made through
clinical observation, not blood tests.
Horowitz said doctors treating Lyme disease must diagnose patients by
performing a thorough physical and taking a detailed medical history as well
as looking at blood tests.
And Phillips said, there's also the hard knowledge that "there's no single
therapy that's ever been proved to cure Lyme disease.''
"There is a significant relapse rate,'' he said.
ILADS is working on all these issues. As president, Horowitz said, he would
like to gather the group's experts in the state where the disease got its
name, and where doctors still wrangle about the best way to treat it.
"We have international conferences where doctors from all around the world
come to present their findings,'' he said. "I'd like to have one in
Connecticut and open it up to both sides of the debate.''
Contact Robert Miller
at bmiller@newstimes.com or at (203) 731-3345.
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