Post by ruth on Apr 2, 2006 11:29:40 GMT -5
Ginger Savely
Lyme wars in TX: 30-day abx limit forces Nurse Pract out of Austin
www.statesman.com/news/content/news/stories/local/03/30LYME.htm
l
Lyme patients say they're losing the one who will treat them
Nurse practitioner said no Austin doctor willing to practice with her
By Mary Ann Roser
AMERICAN-STATESMAN STAFF
Thursday, March 30, 2006
Patients with chronic Lyme disease say that after Friday, the one
medical professional in Austin who has understood their misery and
helped them heal is leaving the state, another victim of a medical
establish- ment that scorns those who treat people like them.
Nurse practitioner Ginger Savely said she is moving her practice to
San Francisco because she could no longer find a doctor in Austin
willing to supervise her practice.
She expects about 75 of her 400 Lyme patients to follow her, but the
rest will be left with scarce treatment options because few
practitioners in Texas — Savely said she knows of two — treat patients
the way she does for the tick-borne bacterial disease.
She gives chronic Lyme patients oral antibiotics, and sometimes
injections, for many months, and sometimes several years, until their
symptoms — which can include extreme fatigue, muscle pain and even
heart trouble — are gone.
That protocol, supported by the International Lyme and Associated
Diseases Society and followed by some other practitioners nationally,
is, however, controversial. The traditional treatment for Lyme
disease, which affects about 20,000 Americans a year, is to give no
more than 30 days worth of antibiotics.
"You can't believe how much it hurts and distresses me to turn people
away," said Savely, 55, a University of Texas nursing school graduate
who once had Lyme disease.
Savely said she doesn't blame her upcoming move on her supervising
physician. She knows that many traditional doctors consider her a
quack, she said.
But she and other practitioners like her say their patients need
ongoing antibiotics to wipe out the infection raging inside them. They
contend the therapy is safe and often is the only hope for the
constellation of debilitating problems their patients face.
"In all the practice years of doing this, I haven't seen the (ill)
effects" of long-term antibiotics, said Savely, who thinks she
developed Lyme after camping in Maryland in 1987 and recovered after a
year of antibiotics. Tuberculosis "gets treated with antibiotics for
18 months, and no one says a peep about that."
Lyme disease is tricky to diagnose because there is no test that is
always right. It's also tough to treat because the multiple symptoms
can come and go, and the longer a person has it, the harder it is to
attack.
But critics of Savely and practitioners like her across the country
say that if antibiotics are going to work, they will work within 30
days.
"There's no value in giving prolonged antibiotics," said Dr. Lisa
Ellis, who works in an infectious disease practice group in Austin.
Antibiotics can cause stomach trouble and other physical problems in
addition to promoting resistance to bacterial strains.
If symptoms persist, something else could be wrong, Ellis said, such
as rheumatoid arthritis or fibromyalgia, asyndrome with some of the
same muscular and fatigue symptoms as Lyme.
"I'm aware some people feel better after they've been listened to or
after they got a long course of antibiotics," Ellis said. "That
doesn't prove the antibiotic did anything. That's not science."
Savely's patients who went to mainstream doctors and received 30 days
of antibiotics said they got sick again when the drugs stopped. Some
were told they were depressed or needed a psychiatrist.
P.J. Bailey of Kingsland said she did without antibiotics for a month
during an insurance change, and her joint pain, memory problems and a
sensation of bugs crawling on her quickly returned. She is taking
antibiotics again, but with her husband disabled by a stroke, she
can't afford trips to California.
"It's really scary, and I'm really worried about what I'm going to
do," said Bailey, a 52-year-old bank loan processor. "I don't know
who's going to want to treat me. Who's going to want to treat all of
us?"
Dr. John Frederick, who has supervised Savely and her patients since
2000, said he could no longer bear the political pressure, which
echoes years of Lyme disease dramas played out before medical boards
and legislatures in Texas and other states.
He said he highly respects Savely, who was named Texas Nurse
Practitioner of the Year by her peers in 2004, but realized he could
not continue with her after a call from his friend Dr. Donald Patrick,
executive director of the Texas Medical Board.
"It was not a threatening call," Frederick said. "It was not a call to
stop treating. He said we had to be real careful treating chronically
ill patients in a way that was not standard in the community."
Patrick said the board has not disciplined doctors in recent years for
treating Lyme disease.
Savely was disciplined last year by the state Board of Nurse of
Examiners for not following certain protocols and record-keeping
requirements in treating a Lyme patient.
Some of her patients are mobilizing in hopes of changing the treatment
environment in Texas.
Karen Bolin, 40, who has Lyme and is president of the Texas Lyme
Disease Association, said no one in Texas knows the disease like
Savely. Bolin recently wrote a letter to Gov. Rick Perry decrying the
lack of medical care in Texas for Lyme patients.
Patients, including Suzanne Shaps, 47, of Austin, and David Kocurek,
57, of the Fort Worth suburb of Colleyville, in February formed Stand
Up for Lyme when Savely announced she was leaving. Their goal is to
educate the medical community, legislators and anyone who will listen
about chronic Lyme disease.
"We hope to create an environment where doctors feel safe treating
Lyme disease," Shaps said.
Legislation might be needed.
Ellis said she knows Savely has a lot of satisfied patients. But she
said she has seen several patients Savely had diagnosed with Lyme who
did not have it.
The reason they relapse when taken off antibiotics, Ellis said, is
that the antibiotics overstimulate their immune response, causing the
symptoms to reappear even though the infection is gone.
A 2003 study of 129 Lyme patients, co-authored by Dr. Mark Klempner at
Boston University School of Medicine, concluded that a long course of
antibiotics was no more useful in treating cognitive symptoms, such as
memory and attention problems, than a placebo.
But Dr. Raphael Stricker, who supervises Savely's San Francisco
practice, said the research was flawed because it considered
"long-term" treatment to be three months, and the dose for two of
those months was too low to be effective.
Even so, Stricker said, the paper "had a chilling effect on everyone."
New research by Dr. Brian Fallon of Columbia University could change
that, said Stricker, president of the International Lyme and
Associated Diseases Society. Fallon tested long-term antibiotic use in
Lyme patients and found it indeed improved cognitive functioning in
adults with chronic Lyme.
Alfred Stanley a 51-year-old Austin political consultant who summers
in Nantucket, said he was bitten there in July and got a bull's-eye
rash, a classic sign of Lyme disease.
He was diagnosed with Lyme there and prescribed three weeks of
antibiotics. Afterward, Stanley developed twitching in his feet. He
got back on antibiotics, and the twitching went away. After he got off
again, the twitching returned and, eventually, moved to his arms.
Back in Austin, he went to Savely and has been on antibiotics for six
months. He doesn't enjoy taking them, he said, but believes he won't
get better without them.
"Patients should be allowed to choose," he said. "That's what patients
are being denied."
Lyme wars in TX: 30-day abx limit forces Nurse Pract out of Austin
www.statesman.com/news/content/news/stories/local/03/30LYME.htm
l
Lyme patients say they're losing the one who will treat them
Nurse practitioner said no Austin doctor willing to practice with her
By Mary Ann Roser
AMERICAN-STATESMAN STAFF
Thursday, March 30, 2006
Patients with chronic Lyme disease say that after Friday, the one
medical professional in Austin who has understood their misery and
helped them heal is leaving the state, another victim of a medical
establish- ment that scorns those who treat people like them.
Nurse practitioner Ginger Savely said she is moving her practice to
San Francisco because she could no longer find a doctor in Austin
willing to supervise her practice.
She expects about 75 of her 400 Lyme patients to follow her, but the
rest will be left with scarce treatment options because few
practitioners in Texas — Savely said she knows of two — treat patients
the way she does for the tick-borne bacterial disease.
She gives chronic Lyme patients oral antibiotics, and sometimes
injections, for many months, and sometimes several years, until their
symptoms — which can include extreme fatigue, muscle pain and even
heart trouble — are gone.
That protocol, supported by the International Lyme and Associated
Diseases Society and followed by some other practitioners nationally,
is, however, controversial. The traditional treatment for Lyme
disease, which affects about 20,000 Americans a year, is to give no
more than 30 days worth of antibiotics.
"You can't believe how much it hurts and distresses me to turn people
away," said Savely, 55, a University of Texas nursing school graduate
who once had Lyme disease.
Savely said she doesn't blame her upcoming move on her supervising
physician. She knows that many traditional doctors consider her a
quack, she said.
But she and other practitioners like her say their patients need
ongoing antibiotics to wipe out the infection raging inside them. They
contend the therapy is safe and often is the only hope for the
constellation of debilitating problems their patients face.
"In all the practice years of doing this, I haven't seen the (ill)
effects" of long-term antibiotics, said Savely, who thinks she
developed Lyme after camping in Maryland in 1987 and recovered after a
year of antibiotics. Tuberculosis "gets treated with antibiotics for
18 months, and no one says a peep about that."
Lyme disease is tricky to diagnose because there is no test that is
always right. It's also tough to treat because the multiple symptoms
can come and go, and the longer a person has it, the harder it is to
attack.
But critics of Savely and practitioners like her across the country
say that if antibiotics are going to work, they will work within 30
days.
"There's no value in giving prolonged antibiotics," said Dr. Lisa
Ellis, who works in an infectious disease practice group in Austin.
Antibiotics can cause stomach trouble and other physical problems in
addition to promoting resistance to bacterial strains.
If symptoms persist, something else could be wrong, Ellis said, such
as rheumatoid arthritis or fibromyalgia, asyndrome with some of the
same muscular and fatigue symptoms as Lyme.
"I'm aware some people feel better after they've been listened to or
after they got a long course of antibiotics," Ellis said. "That
doesn't prove the antibiotic did anything. That's not science."
Savely's patients who went to mainstream doctors and received 30 days
of antibiotics said they got sick again when the drugs stopped. Some
were told they were depressed or needed a psychiatrist.
P.J. Bailey of Kingsland said she did without antibiotics for a month
during an insurance change, and her joint pain, memory problems and a
sensation of bugs crawling on her quickly returned. She is taking
antibiotics again, but with her husband disabled by a stroke, she
can't afford trips to California.
"It's really scary, and I'm really worried about what I'm going to
do," said Bailey, a 52-year-old bank loan processor. "I don't know
who's going to want to treat me. Who's going to want to treat all of
us?"
Dr. John Frederick, who has supervised Savely and her patients since
2000, said he could no longer bear the political pressure, which
echoes years of Lyme disease dramas played out before medical boards
and legislatures in Texas and other states.
He said he highly respects Savely, who was named Texas Nurse
Practitioner of the Year by her peers in 2004, but realized he could
not continue with her after a call from his friend Dr. Donald Patrick,
executive director of the Texas Medical Board.
"It was not a threatening call," Frederick said. "It was not a call to
stop treating. He said we had to be real careful treating chronically
ill patients in a way that was not standard in the community."
Patrick said the board has not disciplined doctors in recent years for
treating Lyme disease.
Savely was disciplined last year by the state Board of Nurse of
Examiners for not following certain protocols and record-keeping
requirements in treating a Lyme patient.
Some of her patients are mobilizing in hopes of changing the treatment
environment in Texas.
Karen Bolin, 40, who has Lyme and is president of the Texas Lyme
Disease Association, said no one in Texas knows the disease like
Savely. Bolin recently wrote a letter to Gov. Rick Perry decrying the
lack of medical care in Texas for Lyme patients.
Patients, including Suzanne Shaps, 47, of Austin, and David Kocurek,
57, of the Fort Worth suburb of Colleyville, in February formed Stand
Up for Lyme when Savely announced she was leaving. Their goal is to
educate the medical community, legislators and anyone who will listen
about chronic Lyme disease.
"We hope to create an environment where doctors feel safe treating
Lyme disease," Shaps said.
Legislation might be needed.
Ellis said she knows Savely has a lot of satisfied patients. But she
said she has seen several patients Savely had diagnosed with Lyme who
did not have it.
The reason they relapse when taken off antibiotics, Ellis said, is
that the antibiotics overstimulate their immune response, causing the
symptoms to reappear even though the infection is gone.
A 2003 study of 129 Lyme patients, co-authored by Dr. Mark Klempner at
Boston University School of Medicine, concluded that a long course of
antibiotics was no more useful in treating cognitive symptoms, such as
memory and attention problems, than a placebo.
But Dr. Raphael Stricker, who supervises Savely's San Francisco
practice, said the research was flawed because it considered
"long-term" treatment to be three months, and the dose for two of
those months was too low to be effective.
Even so, Stricker said, the paper "had a chilling effect on everyone."
New research by Dr. Brian Fallon of Columbia University could change
that, said Stricker, president of the International Lyme and
Associated Diseases Society. Fallon tested long-term antibiotic use in
Lyme patients and found it indeed improved cognitive functioning in
adults with chronic Lyme.
Alfred Stanley a 51-year-old Austin political consultant who summers
in Nantucket, said he was bitten there in July and got a bull's-eye
rash, a classic sign of Lyme disease.
He was diagnosed with Lyme there and prescribed three weeks of
antibiotics. Afterward, Stanley developed twitching in his feet. He
got back on antibiotics, and the twitching went away. After he got off
again, the twitching returned and, eventually, moved to his arms.
Back in Austin, he went to Savely and has been on antibiotics for six
months. He doesn't enjoy taking them, he said, but believes he won't
get better without them.
"Patients should be allowed to choose," he said. "That's what patients
are being denied."