Two Media Reports including Yesterday's Congressional Briefing on Lyme, etc.

[Guest guest]

Very Excellent News Report (thanks to Daystar for passing them along).

NOTICE FROM ON THE MARC MEDIA: _

http://www.kirotv.com/video/17543354/index.html_

(http://www.kirotv.com/video/17543354/index.html)

Fox Story in Seattle about Under Our Skin at the National Capitol Lyme &

Tick Borne Diseases Association's Congressional Breifing on Capitol Hill

THANK THE NEWS DIRECTOR FOR LETTING THE REPORTER DO THIS STORY:

Todd Mokhtari

_tmokhtari@... _ (mailto:tmokhtari@...)

BOSTON HERALD STORY:

If people want to comment on story -- they could write letters to the Editor

_letterstoeditor@... _ (mailto:letterstoeditor@...)

ALSO THANK THE REPORTER - encourage her to do more!!!!

McConville

_cmcconville@... _ (mailto:cmcconville@...)

Bedford teen in fight for Lyme disease funds

By McConville | Wednesday, September 24, 2008 |

_http://www.bostonherald.com_ (http://www.bostonherald.com/) | _Business &

Markets_

(http://www.bostonherald.com/business/general/)

Photo by Mark Garfinkel

After losing a third of her life to Lyme disease, Marlena Connors i s eager

to catch up with her peers.

She’s working to get her high school diploma and telling people about the

six-year health odyssey that began with a red welt the diameter of a grapefruit

on her back.

Diagnosed at age 13 with late-stage Lyme disease, Marlena was so sick that

she had to leave school and quit ballet. Now 18, she’s mostly healthy.

Marlena and her family, who live in Bedford, play a significant role in the

documentary, “Under Our Skin.†It aims to raise awareness of a disease that

some say is woefully misdiagnosed.

The National Capital Lyme and Tick-Borne Disease Association will show

portions of the film on Capitol Hill during a congressional hearing today on

the

disease. The national advocacy group and patents - including the Connors -

will ask Congress to take another look at Lyme.

It has been more than 15 years since Congress last examined the disease, and

members of the national committee hope that a new review will lead to better

diagnostic tools, more research funding, and a stronger push for a cure.

Activists also want to have late-stage Lyme disease reclassified as a

chronic illness, a move that would require health-insurance companies to pay

for

long-term antibiotic therapy. So far, the effort hasn’t been successful; some

medical organizations deny that it is a chronic disease, while others say such

treatment could be harmful.

Lyme disease is transmi tted to humans from bacteria-infested blacklegged

ticks. It is named after the Connecticut town where there was a well-known

outbreak in 1975.

Symptoms include fever, headache, fatigue and skin rashes. If left

untreated, the infection can spread to joints, the heart and nervous system.

According to the Centers for Disease Control and Prevention, some 20,000

people acquire the disease each year, and most are successfully treated with a

few weeks of antibiotics.

Marlena Connors’ mother disputes that. She said yesterday that the

disease has reached epidemic levels, but because it is so frequently

misdiagnosed and under-reported, the government isn’t aware of how prevalent

it is.

Even as Marlena’s rash spread and her temperature soared, the Connors’

doctor declined to test the girl for Lyme disease.

“He said the test had too many false positives,†she said.

Six months later, after Marlena’s knees and ankles had swollen, another

physician determined that she had late-stage Lyme disease.

As her parents searched for effective treatment, Marlena found her body

frequently shut down, and she became increasingly isolated.

It was at the world premier of “Under Our Skin,†in New York City, that she

met - for the first time - other Lyme disease sufferers.

“I know it sounds strange,†she said, “but that was awesome.â€

Article URL:

_http://www.bostonherald.com/business/general/view.bg?articleid=1121108_

(http://www.bostonherald.com/business/general/view.bg?articleid=1121108)

Coughlan

President

MA Lyme & Tick-borne Disease Awareness Assoc.

Mashpee, MA

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