Lyme Disease Guidelines Revisted

CBS - WUSA9 News coverage

Lyme disease advocate and Dr. Fletcher view the hearing

By Lauren Vance  Click to view article and video.

WASHINGTON, DC (WUSA) -- Thursday patients gathered to watch a landmark hearing on the current treatment guidelines for Lyme Disease.

Among those gathered, Stephen Thomas, a school teacher from Arlington, Virginia. He says he suffered through years of misdiagnoses.

"I started having back pain in my late twenties. I started then to have knee pain in 2003, 2004 and then I started having neurological pain," Thomas recalls.

Thomas says his symptoms only got worse. until one day. while searching the internet, he came across a YouTube clip from a documentary called, "Under Our Skin."

"Under Our Skin" follows the emotional stories of patients battling Lyme Disease and the effects of what they believe is the health care system's history of underdiagnosing or misdiagnosing the disease.

For patients like Thomas, he says it wasn't until last year after undergoing a basic Lyme Disease screening that doctors diagnosed him with the disease.

Today, Thomas wears a pic line that directs IV antibiotics directly to his heart.

The repeated amounts of antibiotics is medicine that he's paid for on his own, because current guidelines don't call for such long-term treatment and most insurance plans don't cover the treatment either.

Besides the actual pain of Lyme Disease, Thomas says the psychological turmoil takes a toll too.

"Your dreams of being a good Dad and being a good husband kinda go downhill when you're constantly in pain. It changes your mood and your ability of what you can and cannot do," explains Thomas.

Experts meeting Thursday are reviewing the current blueprint established by the Infectious Diseases Society of America and hearing from doctors on the front lines in treating this often mysterious ailment.

Dr. Sarah Fletcher says as a doctor and a patient herself she wants to reach potential patients sooner and then ensure they will get the treatment they need.

"I had the bulls-eye rash and had meningitis from the Lyme Disease. I was hospitalized for it and treated aggressively early on," Dr. Fletcher explains.

With treatment, Dr. Fletcher says doctors have about a 70- percent response rate, but when left untreated individuals are likely to suffer neurological and musculoskeletal problems such as headaches or bells palsy.

Not all experts agree, but advocates hope that Thursday's hearing is the beginning of redesigning the way the medical community handles Lyme Disease.

For Stephen he hopes the meetings bring more awareness of what he believes are the many unknown factors when you live with disease.

"I would never want patients to go through what we've gone through," says Thomas.