lyme on Oprah

[lindalu]

Oprah appeal for Lyme patients to tell their stories on TV


07/09/07
By Dr. SHARON EISENHOWER/Star-Gazette Health Consultant
Respond to this story
Email this story to a friend



OPRAH: Spotlighting Lyme disease. Oprah Winfrey has opened the message boards on her Web site to victims of Lyme disease who are telling their stories in emotional, inspiring and sometimes nightmarish detail.

The carrot? Participants might be selected to speak out on the talk-show queen's TV show.

And once on the air, they would have a unique opportunity to help bring pressure to bear on the medical industry to find an accurate test for Lyme - and a sure cure.

Here at National Lyme Report - where we've been fighting tooth-and-nail for Lyme patients for years - we commend Ms. Winfrey.

"And we encourage all National Lyme Report readers to contribute to Oprah's message boards as we strive together to get the word out: Innocent people are suffering for want of a diagnosis, for want of Lyme-literate doctors, and for want of treatments that work in every case and not just for some people some of the time," National Lyme Report editor Derek Clontz said.

Excerpts from the message boards follow. You can visit Oprah's site and post your comments by clicking Oprah Lyme Boards . We encourage you to mention National Lyme Report ( our Web address is www.star-gazette.net ) by name in your comments to help spread the word:

Trusted-source, up-to-the-minute news and support are available seven days a week, 365 days a year, from National Lyme Report staff, editors and our growing family of 60,000 readers. We are, in fact, the only Lyme site on earth that answers every query, every plea for help and every request for additional information in a fast, FREE, professional and caring way.


"We've helped thousands of people get the information and help they need and deserve," said Clontz. "We take our mission seriously. We go above and beyond the call of duty without regard for the bottom line.

"Our family of readers can help us by promoting National Lyme Report and the NLR site."

Here are excerpts from Oprah's message boards with the board moderator's "call to action" immediately below in italics and quotation marks:

"Lyme disease: fastest growing disease in the U.S. Medical and legal communities can't agree on effective treatments. Share your experience with Lyme. There are so many of us, we need to unite and be heard."

- ... my sons will forever suffer the devastation that was caused by a lack of diagnosis at an early enough stage. Each of them has arthritis, leg and neck pain, difficulty sleeping at night, mood swings, (they) can be irritable, horrific headaches, diarrhea with no explanation and many more symptoms too numerous to list - both cognitive and physical.

- ... my two older children were diagnosed with Lyme in June 2005. They developed flu symptoms and rashes after tick bites. Both were treated with four weeks of amoxicillan. My son recovered, but my daughter (now 4) never seemed the same.

She "looked fine" but as her mother, I knew she was not well. She couldn't walk even 1/4 mile without resorting to tears, but my judgement was questioned by her doctors and her pre-school teacher. Only my family listened to me.


Her list of symptoms was huge:

* joint pain,

* eye pain,

* headaches,

* extreme fatigue,

* abdominal pain after every meal,

* significant lack of appetite,

* sleep problems,

* bladder problems,

* night sweats,

* periodic fever,

* mood swings,

* and more.

What really pushed me to research the problem was when at 3 years old she repeatedly told me "I hate myself" - and "I wish I was dead".

- I am barely hanging on to my job, and my quality of life makes me question why I keep going. No one should have to live with this pain, and to be dismissed and ridiculed by medical “professionals” is salt on the wound.

- I was so sick with feeling like poison was going through my body. Had to get on auto-immune surpressant as my liver was being attaced by lyme, or my own immune system or both. Turned out I did not have or get Lupis because this new doctors at least acknowleged the lyme. and at least gave me oral antibiotics.

- I was working and in my senior year at University when a strange rash showed up on my waistline, twice, Six weeks apart.

Mid-semester I was overcome with chronic fatigue, chronic pain, anxiety, inability to concentrate, headaches, uncoordination, muscle weakness and paralysis.

Told I had severe anxiety I began a 12 year treatment with a psychiatrist for mental illness only to find out I have by this time Late Stage Lyme Disease.