Protestors push IDSA for change on treatment of Lyme disease - DC News FOX 5 DC WTTG

Protestors push IDSA for change on treatment of Lyme disease

Posted: Updated:
Photo: John Henrehan/FOX 5 Photo: John Henrehan/FOX 5
ARLINGTON, Va. -

About 70 people -- almost all of whom suffer from Lyme disease -- took on part of the medical establishment in Arlington this week. At the end of it all, the protesters declared a partial victory.

There is common agreement in the medical world that Lyme disease exists. In fact, the Centers for Disease Control estimates that as many as 300,000 new cases a year may occur in the United States.

The prevailing medical view is that Lyme is a short-term disease. The protesters who came to Arlington say they have had Lyme for years, and they need better medicine and better medical care than they are getting.

Some of the protesters were in wheelchairs. Almost all of them suffer from (what they call) "chronic Lyme infection," which they describe as incredibly debilitating.

Josh Cutler, who is now 34 years old, says he has had symptoms of Lyme disease for about a decade. Cutler says it was extremely bad in the beginning.

"[I] continued to go downhill to where I was stuck in bed for 19 to 20 hours a day,” he says. “I was confined to a wheelchair. At one point, my wife was having to bathe me. Very humiliating for a guy at 26, losing my career, and everything."

Sammi Radford is a slim 15-year-old who lives in Lovettsville, Va.

"I'm tired," she told us. "I can't run most of the time. In school, it's horrible because I will sit through class and zone out, and then after class, I just don't even know what happened."

The protesters had assembled in front of the Arlington headquarters of the Infectious Diseases Society of America, which recommends only a short-term antibiotic treatment for Lyme disease. The society concluded flatly in 2010 that "there is no convincing evidence of the existence of chronic Lyme infection.” That guidance limits most physicians and health plans to prescribing only a few weeks of medicine.

Amy Fitzgerald, a Lyme patient from Chantilly, Va., says the general limit for medicine is "about 30 days. And, if you are lucky, you will have a doctor -- an infectious disease doctor -- [who will] maybe give you two months of antibiotics. Oral. And after that, they will dismiss you."

Many Lyme patients then seek out alternative physicians, some of whom will prescribe long-term drugs. But then the entire cost of the medicine is borne by the patients.

The demonstrators want the guidelines reviewed.

Executives at the Infectious Diseases Society declined our request for an on-camera interview, but they referred us to a member physician: Paul Auwaerter, M.D., who practices infectious disease medicine at Johns Hopkins University.

Dr. Auwaerter said four studies have concluded that antibiotics administered to patients complaining of long-term Lyme disease symptoms did no better than placebo pills.

Leaders of the demonstrators got a brief meeting with executives at IDSA. The medical executives told the protesters in that meeting, "We're listening."

Although no specific promises were made, the "we're listening" message clearly elated the demonstrators.

In the past, leaders of the demonstrators said they have never gotten any response from the Infectious Diseases Society of America.

The group is making the protest available live online, and word of their efforts was spreading quickly via social media.  

More info:

The Mayday Project website


Twitter: @TheMDayProject

Facebook: The Mayday Project

IDSA website

Facebook: Infectious Diseases Society of America

Twitter: @IDSAInfo



You might also like...

VIDEO: Teen Steals Show with MJ Performance!!!!

COOL: Obama Goes for Stroll on National Mall, Greets Tourists!!!!

PHOTOS:  Woman Tired of Hollywood's Obsession with Perfection!!!!

WOW: Bull Sharks Caught Near DC!!!!
  • Latest health newsMore>>

  • New marijuana drug 'Wax' looks and feels like lip balm

    New marijuana drug 'Wax' looks and feels like lip balm

    Friday, August 22 2014 7:52 PM EDT2014-08-22 23:52:09 GMT
    It goes by the name Wax, Butter and Honeycomb on the streets, and it can pack a kick equal to 15 to 20 joints of marijuana. The new drug looks and feels like lip balm. It's made from the oils of marijuana plants and has a high level of THC - the chemical that produces a high.
    It goes by the name Wax, Butter and Honeycomb on the streets, and it can pack a kick equal to 15 to 20 joints of marijuana. The new drug looks and feels like lip balm. It's made from the oils of marijuana plants and has a high level of THC - the chemical that produces a high.
  • 5 old-time remedies that could save you a trip to the doctor

    5 old-time remedies that could save you a trip to the doctor

    Thursday, August 21 2014 9:42 AM EDT2014-08-21 13:42:56 GMT
    Even with all of the advances in medicine, don't be surprised if your doctor gives you advice that may ring more nostalgic. Doctor Ray Solano joined us with 5 old-time remedies that could save you a trip to the doctor and could already be in your house.
    Even with all of the advances in medicine, don't be surprised if your doctor gives you advice that may ring more nostalgic. Doctor Ray Solano joined us with 5 old-time remedies that could save you a trip to the doctor and could already be in your house.
  • American doctor who had Ebola has recovered

    American doctor who had Ebola has recovered

    Thursday, August 21 2014 6:46 AM EDT2014-08-21 10:46:52 GMT
    At least one of the two American aid workers who were infected with the Ebola virus was to be discharged Thursday from an Atlanta hospital, a spokeswoman for the aid group he was working for said. Meanwhile, Emory University Hospital planned to hold a news conference Thursday morning to discuss both patients' discharge.
    At least one of the two American aid workers who were infected with the Ebola virus was to be discharged Thursday from an Atlanta hospital, a spokeswoman for the aid group he was working for said. Meanwhile, Emory University Hospital planned to hold a news conference Thursday morning to discuss both patients' discharge.
  • Viral StoriesMore>>

  • New marijuana drug 'Wax' looks and feels like lip balm

    New marijuana drug 'Wax' looks and feels like lip balm

    Friday, August 22 2014 7:52 PM EDT2014-08-22 23:52:09 GMT
    It goes by the name Wax, Butter and Honeycomb on the streets, and it can pack a kick equal to 15 to 20 joints of marijuana. The new drug looks and feels like lip balm. It's made from the oils of marijuana plants and has a high level of THC - the chemical that produces a high.
    It goes by the name Wax, Butter and Honeycomb on the streets, and it can pack a kick equal to 15 to 20 joints of marijuana. The new drug looks and feels like lip balm. It's made from the oils of marijuana plants and has a high level of THC - the chemical that produces a high.
  • Oklahoma policeman accused of sex assaults on duty

    Oklahoma policeman accused of sex assaults on duty

    Friday, August 22 2014 11:36 AM EDT2014-08-22 15:36:23 GMT
    An Oklahoma City police officer was arrested Thursday and is being held in lieu of $5 million bond after being accused of committing a series of sexual assaults against at least six women while on duty.
    An Oklahoma City police officer was arrested Thursday and is being held in lieu of $5 million bond after being accused of committing a series of sexual assaults against at least six women while on duty.
  • VIDEO: Beluga whale teases kids at aquarium

    VIDEO: Beluga whale teases kids at aquarium

    Friday, August 22 2014 8:33 AM EDT2014-08-22 12:33:53 GMT
    Video of a beluga whale teasing children at a zoo has gone viral. You can see Juno snapping his jaws at three young children at the Mystic Aquarium in Connecticut.
    Video of a beluga whale teasing children at a zoo has gone viral. You can see Juno snapping his jaws at three young children at the Mystic Aquarium in Connecticut.

Powered by WorldNow
Untitled

WTTG FOX 5 & myfoxdc
5151 Wisconsin Ave. NW
Washington, DC 20016
Main Number: (202) 244-5151
Newsroom: (202) 895-3000
fox5tips@wttg.com

Didn't find what you were looking for?
All content © Copyright 2000 - 2014 Fox Television Stations, Inc. and Worldnow. All Rights Reserved.
Privacy Policy | New Terms of Service What's new | Ad Choices