Lyme treatment at center of debate
- From: lipanz <lipanzmarija7@xxxxxxx>
- Date: Fri, 13 Jun 2008 21:32:44 -0700 (PDT)
Lyme treatment at center of debate
By Jeanné McCartin
features@xxxxxxxxxxxxxxxxxx
June 12, 2008 6:00 AM
"The debate about the existence of chronic Lyme — that is Lyme-type
symptoms that have lasted longer than six months — has been around for
quite some time," says Dr. Don McNeel, of Hampton's Seacoast Lyme
Center.
It's a hot topic, with camps in the medical field at odds with each
another and those dealing with devastating health issues feeling
caught in the middle.
Lyme disease, the tick-borne illness, is difficult to diagnose. False-
negative test results occur frequently, a fact on which both sides in
the debate agree. It's the treatment that lies at the center of the
battle. The usual course is a two- to four-week regimen of
antibiotics. But some familiar with the issue say that's not always
enough. Chronic cases exist. Symptoms may subside after treatment,
appear to vanish then re-emerge with a vengeance, often with more
symptoms and worsening health.
The doctor you choose after the first treatment fails can determine
whether you find support or a revolving door of specialists and no
relief, says Marguerite Mathews.
For a number of years, Mathews, the co-director of Pontine Movement
Theatre in Portsmouth, has lived a hellish health existence, one many
with chronic Lyme experience, she adds. It started with a round of
doctors, a number of misdiagnoses and in some cases being told it was
in her head.
Many patients will find themselves bouncing between primary-care
providers and a variety of specialists from the fields of infectious
disease, neurology, rheumatology, orthopedics, pain management, even
psychiatry, says McNeel.
"After all the tests come back normal ...; they end up being referred
to the psychiatrist for 'somatization disorder,' 'anxiety' or
'depression,'" he says. "If they're lucky, they'll eventually find
their way to one of the organizations seated in the outsider camp,
groups such as the Lyme Disease Association or International Lyme and
Associated Disease Society (ILADS) — those that believe it can take
more than two weeks of antibiotic treatment."
The more traditional medical camp — which includes the Infectious
Diseases Society of America, the U.S. Centers for Disease Control
(CDC) and National Institutes of Health — tends to refer to the
continued occurrence of symptoms as "post-Lyme syndrome," says McNeel.
"Their idea is that the bacterium is all dead after a short two-week
antibiotic course but a residual effect occurs with the immune system.
The ILADS position is that the bacterium is stealthy and hides from
the immune system. Therefore, you have to tailor the treatment for the
individual patient. A set, two-to- four-week, cookie-cutter approach
treatment may not work with everyone."
The CDC's adherence to the short-term treatment allows insurance
companies to refuse payment for treatments outside that regimen, says
Lorraine Johnson, in her article "Lyme Disease: Two Standards of
Care," a reference McNeel sites. Johnson is a lawyer who is also the
executive director of the California Lyme Disease Association.
"Prolonged treatment is not experimental," Johnson says. "It is how
other persistent or relapsing infections in general have been treated
for years (e.g. tuberculosis, leprosy, bone infections, etc). Most of
medicine is practiced in the grey zone of uncertainty where the
medical evidence is not clear — in these circumstances we have to rely
on the clinical judgment of the physician and this clinical judgment
should not be constrained by treatment guidelines (like those of the
IDSA) that preclude treatment options. "
Mathews' symptoms started with what appeared to be a flu, with four
days of high fever. Then, in late spring, she says she began
experiencing "incredible muscle pain in my shoulders and neck...;. It
would wake me up. Nothing relieved the pain."
First came a flu diagnosis; then one for muscle injury and a
prescription for pain.
"The next day I woke up and my face was paralyzed. I knew people that
had Bell's palsy ...; I knew it was a possibility, it was not stroke."
Mathews actually tried to go on with a performance booking, but ended
up at the hospital. She was diagnosed with Lyme disease and put on a
"strong dose of antibiotics and anti-viral medication, 'cause ticks
can carry both (bacteria and viruses)."
Johnson's article explains the difficulties in making a proper
diagnosis stem from the lack of sufficiently sensitive and reliable
biological markers of the disease. She adds that the most beneficial
treatment for persistent Lyme disease has simply not been established.
"No single antibiotic or combination of antibiotics appears to be
capable of completely eradicating the infection, and treatment
failures or relapses are reported with all current regimens, although
they are less common with early aggressive treatment," she writes.
In addition, she says, neither side has the scientific evidence to
fully support its viewpoint. "Outcomes research is limited and
conflicting," she says. "The point, of course, is that the science
underlying both the short-term and the longer-term treatment options
is equally uncertain."
When attempting to manage her care, Mathews found herself in no-man's
land. She was treated and told "you're better now."
"That was August. ...; then in October I started feeling bad again,
twitch things in the face, nerve pain in ear, loud ringing, muscles in
pain. I went back to the doctor," she says. "I was also having
vertigo, disorienting feelings."
A number of specialists followed. The frustration continued. Mathews
was told there was nothing more they could do for her. At times she
was told "it's in your head."
Frustrated, she started researching the subject and found support
groups — and for the first time conversation regarding the
controversy.
"I saw the symptoms called 'active Lyme,' and another point of
view...; that says Lyme is extremely complex, that it has different
ways of hiding in the system ...; and like syphilis and TB, it
requires long-term treatment to kill it off. It was frightening.
"Your symptoms are worse and you're in the middle of a political
controversy. ...; So, when someone says, 'we have a way to treat
you ...; to help you feel better,' I'm going with it."
Mathews reached out to Know Lyme in New Hampshire, and other support
groups.
Until meeting in person, no one would discuss a particular physician
for fear the doctor would be shut down by the medical board. "You try
not to draw attention to doctors or the alternative treatment," she
says.
Today, she's being treated with a combination of antibacterial
medications. She expects to be on them for 12 to 24 months.
"My symptoms are enormously better. My face stopped twitching, the
joint pain has decreased. I still have symptoms but they're much
milder," she says.
And, she's one of the lucky ones, she adds. She's met others in
wheelchairs, or losing their sight from chronic Lyme. "It feels so
unfair. Boom, you're in the middle of this crazy stuff. I also wonder
why the CDC is so opposed to this treatment. They have no problem
treating TB or malaria with long-term, antibiotic treatment; even
teens with acne. But with this, they're denying it."
Seacoast resident Christy Cloutier Holmes has dealt with the illness
for three years. Today it's in remission. Given her experience with
chronic Lyme, she believes it can hit again at any time. "It already
has," she says. "I've had my ups and downs."
Her initial diagnosis was depression. But the aches, pain, and
exhaustion kept her digging. And she personally never felt she was
depressed. Eventually, she was diagnosed with chronic Lyme and sought
treatment from a local naturopath.
An average monthly treatment ran her $150, much cheaper than some drug
regimens, but a lot on a working mom's salary. In the end, the larger
cost was time lost at work. The symptoms were so severe she lost an
entire summer of work. Today, she's careful, keeps watch on her health
and works to keep her immune system strong. But she knows if her
symptoms go into remission, it doesn't mean she's cured.
As the debate rages on, patients remain caught in the middle, unclear
where to turn, not sure what to do.
"The danger is in trying to blame all of life's issues on a single
infection," says McNeel. Life is complex and multifactorial. Neither
side had the complete answer. Yet, the debate itself compromises
patient care."
.
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