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Lyme Disease Difficult To Diagnose, Treat

CDC Reports About 20,000 New Cases Each Year

Lyme disease can leave victims more disabled than a heart attack. Some doctors say there is an under-recognized rise in the cases of the disease in the U.S. If caught early, Lyme disease is treatable, but in many cases, patients don't get the characteristic rash at the site of a bite. Now, patients and doctors are speaking up about a disease that some are calling the next pandemic.

Ten years ago, Julie Hutchingson came down with a mysterious set of symptoms.

"Depression, severe fatigue, insomnia, series of vertigo, unexplained tendonitis that would not heal, floaters in my eyes," Hutchingson said.

The busy mom went from doctor to doctor, who suggested it could be over 10 different conditions.

"A couple of doctors mentioned HIV, possibly AIDS," Hutchingson said.

After seven years, she finally got a definitive diagnosis -- Lyme disease. The Centers for Disease Control and Prevention reports about 20,000 cases of Lyme disease have occurred in the U.S. in recent years but says actual numbers could be up to 10 times that amount.

The root of the underreporting? Some doctors say it lies in the blood test.

"The CDC recognizes three strains right now, but there might be 300 strains," said Dr. Michael Cichon, assistant clinical professor at the University of South Florida.

Doctors also disagree on treatment. Cichon uses IV antibiotic therapy for four months or longer on some of his patients. The Infectious Diseases Society of America says the long-term treatment carries risks like antibiotic resistance and infection and recommends a shorter course of less than two months -- based on three National Institutes of Health studies

"And all three studies indicated that prolonging antibiotic treatment after 60 days does not seem to have any further effect," said David Balkwill, professor of microbiology at the University of Central Florida College of Medicine.

"The Infectious Diseases Society needs to stop their guidelines. Make them just recommendations," Cichon said.

But there is one thing most agree on.

"Change needs to happen," Hutchingson said.

Hutchingson underwent long-term antibiotic therapy. She hopes to save others from the unanswered questions that troubled her for years.

To better understand how Lyme disease spreads, the National Science Foundation recently awarded a four-year, $2.5 million grant to scientists at five U.S. universities. Besides a rash at the site of a tick bite, symptoms to watch out for include joint pain that migrates from one joint to another, fever, chills, fatigue and body aches.

BACKGROUND: Lyme disease is an infection caused by a type of bacteria carried by the black-legged deer tick. When the bacterium is transmitted through a bite, a round, bull’s-eye-shaped rash normally appears around the rash. Symptoms that can follow include flu-like symptoms like body aches and fever, swelling of the joints and facial paralysis.

TREATMENT: WHAT WORKS? According to the Infectious Diseases Society of America (IDSA), the vast majority of Lyme disease cases are easily treated and cured with common antibiotic therapies. This type of therapy involves a single course of antibiotics for 10 to 28 days, depending on the stage of illness. While the IDSA states long-term antibiotic therapy -- or treatment past the 28 days -- can be dangerous and lead to potentially fatal infections in the bloodstream, some doctors are taking that route. One of those doctors is Michael Cichon, an internal medicine and infectious disease specialist in Tampa, Fla. He believes long-term antibiotic therapy is overlooked as a sometimes necessary treatment. "That's why we have people who are chronically ill -- because we never killed [the infection] in the beginning," Cichon said.

There is also a conflict in the field of Lyme disease treatment concerning whether or not a diagnosis of "chronic Lyme disease" is accurate. The IDSA states "scientific data do not support a separate diagnosis of 'chronic' Lyme disease" and recommends patients with symptoms that persist after antibiotic treatment talk to their physicians about "whether the original diagnosis was accurate or if they may have a different or new illness." The National Institute of Allergy and Infectious Diseases says experts in the field do not support the use of the term "chronic Lyme disease."

PREVALENCE: The Centers for Disease Control and Prevention reports about 20,000 people get Lyme Disease each year, and the IDSA says nearly all cases of the infection occur in the Mid-Atlantic and Northeast states. According to the CDC, over 27,000 cases of Lyme disease took place nationally in 2007, but the number has dropped to about 25,000 since then.

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