Maryland Support Group Leader Creates Website
Published in the Star Democrat- Easton, MD
&
Cecil Whig- Elkton, MD
Md. support group leader creates Lyme disease website
Posted: Wednesday, September 8, 2010 2:46 pm | Updated: 2:48 pm, Wed Sep 8, 2010.
By BECCA NEWELL Star Democrat Staff Writer |
EASTON -- The general rule about diagnosing Lyme disease is if you don't develop a rash, you don't have the disease.
However, this isn't always the case, according to Lucy Barnes, director of the Lyme Disease Education and Support Groups of Maryland, who recently developed a website to educate others about the disease and its misconceptions.
"I get so many requests for help, so I decided instead of saying the same thing over and over again, I'd put up a website," Barnes said, who began placing articles on the site about a year ago.
The website, www.marylandlyme.org, features about 430 pages packed with anything and everything regarding the disease. Barnes, a Queen Anne's County resident, said important facts about Lyme disease have been misconstrued over the years and that the website will help to get the correct information out to the public.
Although Barnes had no experience in web design, she said the process was fairly simple and inexpensive, thanks to Google, which offered a free site.
"This will help to reduce the work load after all these years of doing this ... it's going to help me personally, as well as the volunteers," she said. "(The website) gives (people) access to the information 24/7 and we're still available if they have other questions."
And the site isn't only for those diagnosed with Lyme disease there are sections relating to Lyme disease prevention, pages that describe early symptoms of the disease and information for patients who have recently been diagnosed.
One of the major misconceptions that Barnes and other Lyme disease educators are trying to eradicate is that a rash isn't the only indicator of the disease. In fact, symptoms can be flu-like and can travel throughout the body, resulting in perhaps a swollen leg one day and an irritated eye the next, Barnes said.
"Often people without a rash are told that nothing is wrong with them, so to keep them from feeling not validated, they can go to the website and see if they do have something related to Lyme," she added. "It might prevent you from being treated for 15 different afflictions when you could have just been treated for Lyme disease."
According to Barnes, statistics show that nationally less than 10 percent of children that have a tick bite receive a rash and in Maryland, less than 50 percent of Lyme cases reported having no rash, which results in patients being misdiagnosed with other diseases, such as ALS (Lou Gehrig's) or Parkinson's.
"Lyme disease victims are treated for (another disease), which doesn't get to the root cause of the problem," she said.
Misconceptions about symptoms of Lyme lead to more issues than misdiagnoses, Barnes said, adding that the Infectious Disease Society of America has set out guidelines based on incorrect information that insurance companies use to deny payments and doctors use to deny treatment.
"We work with the Lyme Disease Association on prevention and education, and there's local and state legislative issues that we work with ... the website contains generic information about these issues that can be used by anyone," said Barnes. "We're doing the best we can to get the word out."
http://www.cecilwhig.com/news/statenews/article_6e719a74-bb79-11df-a7c0-001cc4c002e0.html?mode=print
Maryland support group leader creates Lyme disease website
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Lyme disease support group
Maryland patients traveled to Westchester Medical Center in New York, home of several IDSA Guideline authors, to rally against their treatment guidelines.
Posted:Wednesday, September 8, 2010 6:42 am
By BECCA NEWELL Staff Writer |1 comment
EASTON The general rule that we've all been told about diagnosing Lyme disease is if you don't develop a rash, you don't have the disease.
However, this isn't always the case, according to Lucy Barnes, director of the Lyme Disease Education and Support Groups of Maryland, who recently developed a website to educate others about the disease and its misconceptions.
"I get so many requests for help, so I decided instead of saying the same thing over and over again, I'd put up a website," Barnes said, who began placing articles on the site about a year ago.
The website www.marylandlyme.org features about 430 pages packed with anything and everything regarding the disease. Barnes, a Queen Anne's County resident, said important facts about Lyme disease have been misconstrued over the years and that the website will help to get the correct information out to the public.
Although Barnes had no experience in web design, she said the process was fairly simple and inexpensive, thanks to Google, which offered a free site.
"This will help to reduce the work load after all these years of doing this ... it's going to help me personally, as well as the volunteers," she said. "(The website) gives (people) access to the information 24/7 and we're still available if they have other questions."
And the site isn't only for those diagnosed with Lyme disease there are sections relating to Lyme disease prevention, pages that describe early symptoms of the disease and information for patients who have recently been diagnosed.
One of the major misconceptions that Barnes and other Lyme disease educators are trying to eradicate is that a rash isn't the only indicator of the disease. In fact, symptoms can be flu-like and can travel throughout the body, resulting in perhaps a swollen leg one day and an irritated eye the next, Barnes said.
"Often people without a rash are told that nothing is wrong with them, so to keep them from feeling not validated, they can go to the website and see if they do have something related to Lyme," she added. "It might prevent you from being treated for 15 different afflictions when you could have just been treated for Lyme disease."
According to Barnes, statistics show that nationally less than 10 percent of children that have a tick bite receive a rash and in Maryland, less than 50 percent of Lyme cases reported having no rash, which results in patients being misdiagnosed with other diseases, such as ALS (Lou Gehrig's) or Parkinson's.
"Lyme disease victims are treated for (another disease), which doesn't get to the root cause of the problem," she said.
Misconceptions about symptoms of Lyme lead to more issues than misdiagnoses, Barnes said, adding that the Infectious Disease Society of America has set out guidelines based on incorrect information that insurance companies use to deny payments and doctors use to deny treatment.
"We work with the Lyme Disease Association on prevention and education, and there's local and state legislative issues that we work with ... the website contains generic information about these issues that can be used by anyone," said Barnes. "We're doing the best we can to get the word out."
http://www.stardem.com/news/local_news/article_5133fc7e-bb36-11df-b711-001cc4c03286.html