Lyme Action Network warns against outdated treatment guidelines

PHOTO PROVIDEDShown here are ixodes scapularis, or black-legged deer ticks, at various stages of development. The parasites are known to transmit Lyme disease and other serious illnesses.  

PLATTSBURGH — Christina Fisk believes there's a lot of ignorance surrounding Lyme disease and other tick-borne illnesses, and it most certainly isn't bliss. 

When it comes to tick bites, according to the Lyme Action Network president, the treatment guidelines used by the majority of medical practitioners are outdated, incomplete and unsupported by science.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. 

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." 

BASED ON BULL'S-EYE

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 guest essay, "How we got where we are today on Lyme disease," which appeared in the Glens Falls Post Star last month, 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. 

MULTI VS. SINGLE DOSE

"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 (ILADS), which is a professional medical society that has found that many, many people who get that treatment go on to have chronic Lyme.”

While there is no black-and-white answer as to whether deer-tick bites should be treated prophylactically, the organization's website notes, "if you do decide to be treated, it should be for no less than three weeks."

People living in endemic areas for Lyme disease should "definitely consider treatment," according to the site. 

HALF OF TICKS INFECTED

About half of all ticks in upstate New York are infected with Lyme disease, the Lyme Action Network said in a media release, and many of those carry more than one pathogen. 

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."  

TEST RESULTS

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." 

And by then, Fisk said, the disease has disseminated through the body. 

'LITTLE CESSPOOLS'

“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 Saratoga County resident Charles Grant Smith. 

"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. 

Powassan is rare, she noted, "but the female ticks who are infected with Powassan virus pass the virus on to all two (thousand) or three thousand eggs that they lay, so it's just something to be aware of." 

SPEED OF TRANSMISSION

People are in danger of contracting a disease if a tick is attached to them for any amount of time, according to Fisk. 

"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. 

There is a $50 fee for the service, but results are available within three business days of the tick arriving at the lab. 

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 Continuing Medical Education program created by Dr. Elizabeth Maloney, who founded the Partnership for Tick-borne Diseases Education. 

“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. 

"All we are asking is for you to just learn more."

Email Ashleigh Livingston:

alivingston@pressrepublican.com 

Twitter: @AshJLivingston 

LEARN MORE

Lyme Action Network: lymeactionnetwork.org

International Lyme and Associated Disease Society: ilads.org

Minnesota Lyme Association: mnlyme.org

TICK REPORT

For additional information about Tick Report, including how to submit a tick for testing, visit tickreport.com

Ashleigh Livingston reports education and health news. She is a graduate of SUNY Plattsburgh, where she also serves as an adjunct lecturer.

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