Alabama - Lyme disease

From: JWissmille (jwissmille_at_aol.com)
Date: 08/27/04 

Date: 27 Aug 2004 02:58:01 GMT

http://www.tuscaloosanews.com/apps/pbcs.dll/article?AID=/20040816/APN/408160504

http://tinyurl.com/6tpsw

Woman with disease so rare in Alabama no local help found

By SAMIRA JAFARI
Associated Press Writer
August 16, 2004

When Stephanie Ingram wakes up, she tries to patch together her thoughts,
catch her balance and shake off the pain, exhaustion and fatigue that's
plagued her for more than three years.

That would be a good day. She mostly has bad weeks.

Ingram suffers from chronic Lyme disease, a bacterial illness transmitted by
deer ticks that is so rare in Alabama, and most of the South, that medical
help in the state did her little or no good. With some doctors skeptical the
disease even exists in Alabama, Ingram was forced to seek treatment at a
clinic in suburban New York.

"I honestly felt like I was dying," said the married mother of four from
Montgomery. "I had four young children and I felt like I was racing against
the clock."

The clinic in Millbrook, N.Y., where Ingram remains, has diagnosed her with
a chronic form of the disease, and has started a lengthy antibiotic
treatment that she could not get in Alabama.

The 44-year-old said she is a victim of a medical impasse - a disagreement
among physicians over whether advanced stages of the disease even exist and,
if they do, how they should be treated.

She said her 13-year-old son is a victim, too; he has been diagnosed with
the disease and also is under treatment at the New York clinic.

They have no recollection of when or where they may have contracted the
disease, but she believes it probably was inside Alabama since her son
hasn't left the state since he was little and she had not for at least a
year before she began experiencing health problems.

The Centers for Disease Control says the illness can be fairly tricky to
test for and diagnose, mainly because its symptoms take on an array of
forms, including arthritis in its early stages to mild seizures, memory
loss, facial paralysis and other neurological symptoms in later stages. It's
sometimes easier to diagnose if a tell-tale "bull's eye rash" appears;
Ingram didn't have it.

Diagnoses are most common where the bulk of cases are reported - 95 percent
of the cases are from the New England, mid-Atlantic and north-central
states.

But that doesn't mean it's not spreading to other regions, said Dr. Erin
Staples, a CDC epidemiologist.

"It is a persistent and growing concern for the U.S.," she said. "The
general trend is Lyme disease cases increase over a steady rate in time."

Doctors who apply a broader definition may diagnose "chronic" or "probable"
Lyme disease and initiate months, sometimes years, of potent antibiotic
treatments. This method is viewed as risky by many in the medical
profession, mainly because it can cause an internal infection in some cases,
said Alabama's state epidemiologist, Dr. J.P. Lofgren.

The vast majority of Alabama doctors don't feel comfortable diagnosing Lyme
disease, partly because of the similarity of the symptoms to that of other
diseases and the inaccuracies of the tests, he said.

Lyme disease is caused by a bacterium - the technical name is Borrelia
burgdorferi - that is transmitted to humans by infected deer ticks, also
known as black-legged ticks, that contracted it from certain breeds of mice.

Since 1995, only 96 cases of Lyme disease have been reported to Alabama's
public health department. Lofgren said those cases were either contracted
outside the state or falsely received a positive test result for the
disease.

He also said it is virtually impossible for Alabamians to contract the
disease within state lines because the mice from which Northern deer ticks
contract the bacterium do not live in Alabama.

"We do have patients who meet the definition for Lyme disease, but we think
they're all not true cases unless they've been exposed in states like
Wisconsin or Connecticut," Lofgren said.

Though few, there have been diagnoses in Alabama - often late and resulting
from frustrated patients desperately attempting to find out what ails them.

Les Roberts, a south Alabama broker, co-directs a Lyme disease support group
for patients in his region and northwestern Florida. He said his first
symptoms of Lyme disease appeared in the form of heart problems in 1990 - he
was diagnosed a decade later.

In the 10 years between, Roberts said he visited a laundry list of medical
specialists, from cardiologists to urologists.

"The story I got consistently was 'You don't have Lyme disease, you're just
depressed,'" Roberts said. "The doctors consistently denied I had any
infection. I was almost dead."

Roberts was diagnosed by a Lyme disease specialist in Mobile after a urine
test for Lyme came back positive. The urine test for Lyme disease has not
been approved by the FDA, Staples said.

The 65-year-old Roberts said he hears from at least two Lyme diseases
sufferers a week, and has been contacted by "dozens" for help since his
diagnosis.

Ingram's battle was shorter, though no less aggravating.

She tested positive for the disease on five tests before going to New York,
and said she encountered much skepticism from in-state doctors. As a result,
it took three years to confirm her diagnosis.

Ingram has since filed a lawsuit against two doctors she saw between 2001
and 2003. She claims they failed to accurately diagnose her with Lyme
disease and deprived her of antibiotic treatment in the disease's acute, or
non-chronic, stages.

According to her lawsuit, both doctors put her through a battery of tests
and returned positive results for Lyme disease, but denied her proper
treatment.

Attorneys for the doctors said their clients deny those allegations.

Meanwhile, Ingram's symptoms worsened and her vision began to deteriorate.

"By now, I was so sick, I could barely sit up in chair," Ingram said. "I
could only assume, there was no Lyme in Alabama and I had some other
terrible disease."

By summer 2003, another internist in Birmingham gave her short-term
antibiotic treatment preferred by most doctors treating Lyme. But by that
point, Ingram's condition was so advanced that the six-week plan had little
impact. She gave one more Alabama doctor a try, but like the first few, he
questioned available treatment options.

Ingram finally decided to seek treatment at the clinic in New York that
specializes in treating the disease. The doctors there have told her that
there is no cure for chronic Lyme.

She has completed just over half of her three-month treatment, which
consists of daily IV drips of strong antibiotics. The side effects of the
concentrated treatment have magnified her earlier symptoms, she said, making
her fatigue and joint pain almost unbearable.

When she returns home to her family in the fall, she will continue to take
oral antibiotics for an indefinite amount of time. She said her son, whose
disease is still in its acute stages, has been placed on a short-term
antibiotic therapy while he stays in New York with her.

Ingram said her family has been drained emotionally and financially, and for
now she's "trying to buy time" with the treatments.

"I will likely be back here (at the clinic)," she said. "And I will have to
keep doing it until they find the magic bullet to destroy it completely or
until it kills me."

Copyright © 2002 The Tuscaloosa News

 

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