Woman with disease so rare in Alabama no local help found By SAMIRA JAFARI
The Associated Press
8/15/2004, 11:13 a.m. CT
MONTGOMERY, Ala. (AP) -- 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."
[THIS STORY APPEARED IN SEVERAL ALABAMA NEWSPAPERS, INCLUDING ONES IN BIRMINGHAM AND TUSCALOOSA.]
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