Posted at: 05/16/2013 3:31 PM
Updated at: 05/16/2013 4:41 PM
By: Benita Zahn
A year ago Lori Brownell was experiencing bizarre symptoms including seizures and fainting spells. Until then she was a very active teenager at Corinth High School.
"You know, that's when my life started to stop," said the former high school softball player.
First dismissed as have a psychiatric problem, she was eventually diagnosed with chronic Lyme disease and two other tick-borne diseases, erlichiosis and babeziosis.
She credits ongoing treatment with IV antibiotics for regaining her health, although she still suffers joint pain, bouts of overwhelming exhaustion and a facial tic.
Despite her recovery, she knows many in the medical community don't acknowledge her diagnosis or treatment. So she's caught in a sort of nether word as science battles over what ails her.
"The term chronic Lyme is probably a misnomer in that it implies that the infection last for a long time,” said Dr. Ron Guilick, head of infectious diseases at Weill-Cornell Medical Center in New York City.
"A better term is probably post-treatment Lyme syndrome,” Guilick said. “Syndrome is a term in medicine we use, which is a constellation of symptoms when we don't know the cause for something."
Call it what you want, but John McPherson, creator of the syndicated cartoon “Close to Home,” says he's got chronic Lyme. The Saratoga County resident was first infected 15 years ago near his home.
"Didn't put any of this together. Just thought I had some sort of flu virus," McPherson recalled.
The symptoms would come and go -- bringing exhaustion, excruciating body pain and, as McPherson puts it, brain fog. Another tick bite four years ago sealed his fate.
"I was so sick I was mostly working from bed,” he said.
Eventually he was diagnosed with Lyme and, like Lori, treated with IV antibiotics.
McPherson shared his story recently at a gathering of Lyme experts and lawmakers in New York City sponsored by the Tick-Borne Disease Alliance. Their goal is greater awareness, improved testing and finding a cure for tick born diseases.
"In fact, there is no standard and wholly effective treatment,” U.S. Sen. Kirsten Gillibrand explained at the event. “Therefore as with all progressive diseases the patient will get sicker if left untreated.”
Add to this reluctance by health insurers to pay for treatment beyond the three-week course of antibiotics supported by the Centers for Disease Control.
"This is not being covered in a way our constituents need. It can cost up to $1,000 for the first consult,” Rep. Chris Gibson said.
The Alliance is also working to raise awareness that one tick bite can bring more than Lyme disease. Erlichiosis, babesiosis and microplasmosis can be transmitted.
"The," said Dr. Holly Ahern, microbiologist and professor at Adirondack Community College, says the reluctance on the part of an infectious disease specialist to acknowledge the other infections interferes with patient treatment and screening.
We all have a stake in this battle because babesiosis, a malarial type disease, has made its way into our blood supply, probably from infected donors.
"It is a threat," said Dr. David Leiby, head of transmissible diseases for the American Red Cross. "It is the agent that gets transmitted most often right now by the blood supply."
While not deadly, Leiby says it can exacerbate other illnesses.
So far, he says, Lyme has not been transmitted through donated blood, but that underscores the need for better screening tests. Right now there's no way to keep people infected with tick-borne diseases from donating.
"And once they are there they are practically impossible to eradicate," said Ahern.
If you're bitten by a tick, be your own best advocate. Not everyone develops a bulls eye rash or flu-like symptoms when infected with Lyme.