Lyme disease experts warn against outdated diagnosis, treatment protocols
Published 5:45 am Wednesday, August 2, 2017
PLATTSBURGH, N.Y. — A New York authority on tick-related diseases is urging both medical professionals and the general public to think twice when it comes to what they think they know about the effects and treatment of a tick bite.
Lyme Action Network president Christina Fisk believes there’s a lot of ignorance surrounding Lyme disease and other tick-borne illnesses.
When it comes to tick bites, according to Fisk, the treatment guidelines used by the majority of medical practitioners are outdated, incomplete and unsupported by science.
“There is a current habit being promoted by many doctors, hospitals, emergency rooms, where if somebody has a tick bite, they are given a single dose (in the form of two pills) of doxycycline to prevent Lyme disease,” she said.
Developed in 2009 by Fisk and vice president Holly Ahern, the Lyme Action Network works with community members and disease experts to drive change in Lyme disease policy at both the state and federal levels, according to the organization’s website.
However, Fisk noted, there’s no peer-reviewed evidence that demonstrates this treatment works.
“It’s based on a very small study done only over a six-week period, and all it proved was that the two pills prevent a rash from occurring,” she explained. “It does not kill the bacteria. It does not prevent the disease. It only prevents a rash and, therefore, complicates diagnosis later on down the line.”
DIAGNOSIS AND TREATMENT
The Infectious Diseases Society of America developed Lyme disease treatment protocols — which are supported by the Centers for Disease Control and Prevention and widely followed by medical practitioners — based on research done in the mid 1970s by rheumatologist Dr. Allen Steere, according to Fisk.
“Initially, there were good intentions in the research, and there were good intentions in trying to figure out the proper construct, but there was a really serious research flaw in what he did,” she said. “It got cemented into the treatment construct of the IDSA, and nobody’s been willing to back up and fix it.”
In her essay, “How we got where we are today on Lyme disease,” Fisk explains that for Steere’s seminal study of the then-undetermined condition, he selected only patients with bull’s-eye rashes to participate.
“Other symptoms were deemed secondary and not useful for confirming this new condition,” she writes. “In 1977, Steere decided to stake the definition of this new disease on the presence of the bull’s-eye rash alone.”
But while such a rash is considered confirmation of Lyme disease, according to the Lyme Action Network, only about 30 percent of people with the disease report this symptom.
“If there’s one message to get out there, it’s to alert people to the fact that if they have a tick bite, they should not accept the two pills, or single dose of doxycycline,” Fisk said.
“And that advice is coming from the International Lyme and Associated Disease Society, which is a professional medical society that has found that many, many people who get that treatment go on to have chronic Lyme.”
Instead, based on the suspected type of Lyme disease exposure, the ILADS provides detailed guidelines for proper treatment. People living in endemic areas for Lyme disease should “definitely consider treatment,” according to the ILADS site.
One prime factor affecting treatment and diagnosis? Many ticks carry more than one pathogen.
“There’s so many of these other co-infections floating around now, too, that the doctors need to be aware that somebody might come in the door with a tick bite, and they may have two or three different diseases because those ticks are like little cesspools,” she said.
Among these tick-borne illnesses are anaplasmosis, babesiosis and Powassan virus, the latter of which recently took the life of a Saratoga County, New York resident.
“They all require different kinds of approaches, so the doctors really need to know that they might be looking at somebody who’s got multiple problems,” Fisk said.
Most doctors, however, are not aware of the International Lyme and Associated Disease Society guidelines, Fisk said.
“They’re not taught about it in school,” she said. “It’s sort of up to us to try to get the word out there.”
TESTING & SPEED OF TRANSMISSION
Additionally, Fisk noted, current diagnostic tests for Lyme disease are accurate only about 50 percent of the time.
“So if you get bitten by a tick, and you go to the doctor a day or two later, and he does a blood test, he’ll say, ‘Well, your blood test was negative, so you don’t have it,'” she said. “But the problem is that it takes weeks for the body to develop the antibodies that the diagnostic test looks for.”
By then, Fisk said, the disease has disseminated through the body.
People are in danger of contracting a disease if a tick is attached to them for any amount of time, she said.
“A lot of people say, ‘Well, if the tick isn’t attached for 36 hours, you’re safe,'” she said. “That’s just not true. Powassan virus transmits in 15 minutes…and we know of people who have acquired Lyme disease in four hours or less.”
The Lyme Action Network recommends that anyone bitten by a tick send the specimen to Tick Report at the Laboratory of Medical Zoology at the University of Massachusetts for testing.
“They evaluate the tick, and they report back what’s in that tick…so at least you have an idea of what you’re dealing with,” Fisk said.
MORE EDUCATION
Fisk’s group is also calling for improved medical training and more research in the field of tick-borne diseases.
It’s urging medical professionals to update their education on the topic through resources, such as the Minnesota Lyme Association’s Continuing Medical Education program.
“There are new things emerging from current research that are not making their way into the IDSA construct and not making their way to the doctors, the hospitals,” Fisk said.
“And this is causing an enormous amount of distress on our part because we see this new information emerging, and we see it kind of falling on deaf ears.
Livingston writes for the Plattsburgh, New York Press-Republican.