I got great feedback from the communities and even dug several new Lymies out of the woodwork. (One man had been suffering for 10 years and had been on the brink of suicide several times.) Same old story--many doctors, no diagnosis, it's all in your head. (Sound familiar?)
Bravo!
Ann - OH
Tell us more!!!
Can't wait to see the articles!!!
You'll never know how many people were helped by reading your story.
Fantastic!!
Jamie
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Cannot you at least give us the name of the two papers so we can decide if it is worth our time or not registering at their sites?
What's the problem with that?
Any one know of the names of the two papers?
It's been 4 days now since you posted this, can we please know the names of the papers?
You can click that Post Reply button that is at the top AND the bottom of this page if you are reading this.
Thanks, lookin forward to read the article.
Rosemary
That is really awesome news, Im proud of you. I haven't seen you post back in a few days, are you feeling ok? I hope youre not in ill health.
You get back to us when you feel better or when you come back from take a much needed break on this here computer!
I look forward to seeing your articles when you come back. Do you think you could post them for us? I did a little searching for them myself on google but they wanted me to pay to register to get the article!
See ya soon.
quote:
Originally posted by Ann-OH:
what was the date of publication? Or maybe the name of the writer or the name of the article, please?
I can get on the Mineral Daily News... site, but can't find the article. They do have archives.
Would love to read your story.
Ann - OH
Ann - the article is in archives, but requires subscription in order to access.
There are two different articles. One is in the Cumberland Times News. Their website is www.times-news.com. You have to register with screen name and pw. You could do a search on Lyme disease and see if you find it in the archives. It was published in their WV Sunday supplement on 10/24/04. The other is in the Mineral Daily News Tribune, Keyser, WV, it focused more on the symptoms, etc. It appeared on 10/11/04. I tried to access it, but it says you have to have a paid subscription which I don't understand.
I am feeling fine...thanks for asking. We are currently having medical drama with my husband who has an autoimmune blood disorder. (It's called ITP where his body destroys its own platelets.) This has taken up a lot of my time (appts. tests, etc.) and I am also involved in some other Lyme stuff, not to mention my full-time job!
Thanks for all of the cheering!
[This message has been edited by luvmycat (edited 03 November 2004).]
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Local woman adapting to often misdiagnosed disease
When XXX first began to get sick, she wasn't sure what was causing
it. After trips to the emergency room and 14 various doctors and "-ologists", XXX finally found the cause - Lyme Disease.
She said her symptoms started in May 2002.
"My eyes got red and irritated. There were different symptoms and I tried different doctors," she explained. "I began getting dull headaches every single day for two months. I'm a person that never gets headaches."
She said her eyes became sensitive to light and the pain was unbearable.
In September of that year, her problems worsened.
"My calves and feet felt like they were full of bugs trying to get out. It was horrible," she said. "I didn't know what to do."
That night, her feet and the arches of her feet started uncontrollable spasming.
"It was horrifying," XXX said. She called a friend, who happens to be a chiropractor, and underwent an MRI.
The MRI found lesions on her brain and they first thought she had multiple sclerosis.
"That started the doctors. One after another," she said, noting most of the doctors dismissed it as anxiety. She was prescribed antidepressants and anti-anxiety medications.
The twitching had started in her legs, but had spread through her entire body. There was also a buzzing sensation.
"You could actually see it through heavy corduroy slacks," XXX said. "I thought I was possessed."
She works...and said trying to work every day was very difficult.
"I had a lot of tingling and numbness that moved around. There were numb patches. The symptoms kept piling up," she explained. "I had vertigo that came and went. There were random sharp pains throughout my body."
In March 2003, she began having difficulty swallowing and breathing. It felt like her breathing muscles had turned to stone, she said.
Heart palpitations and breathing problems sent XXX to the emergency room three times. She also had night tremors and night sweats, as well as subcutaneous tissue loss around her clavicle.
"I don't know if it was the site of the bite," she said.
In December 2003, when the medications didn't help any of her symptoms, she went to the Internet for information. She found the site www.braintalk.org, which posts a neuromuscular forum.
"People post who are undiagnosed and don't know what's wrong," she said.
She was reading the posts and someone mentioned the Lyme Disease Web site. She clicked on the link and started reading symptoms of Lyme Disease. She knew then what was causing her problems, although she didn't remember didn't bit by a bug.
The Web site www.ilads.org lists basic facts for Lyme Disease, including the fact that less than 50 percent of people who get Lyme Disease don't recall where they got the bite.
"I'm chained to a desk all day long. I'm not an outdoors person," she said.
She eventually found a Lyme Disease specialist who formally diagnosed her and she started rounds of antibiotics. The lesions on her brain which were detected by the MRI were Lyme lesions, indicating her advanced case of Lyme Disease.
"In many cases it can be chronic because it's gotten into the central nervous system and gotten into places where antibiotics can't reach," XXX said. "It nests in the brain behind the eyes. It uses the spinal fluid to reseed the body."
She said Lyme Disease is frequently
misdiagnosed as fibromyalgia, MS, chronic fatigue, Parkinson's Disease and Lou Gehrig's Disease.
"It is estimated 1 in 10 cases are actually reported, but you have to consider all the cases that fall through the cracks," she said.
XXX noted a Web site that lists approximately 50 symptoms of Lyme Disease,
many of which she had, including the fever, fatigue, swollen glands, pulse skips, twitching of the face or other muscles, headache and loss of muscle tone. The symptoms can be found at www.xpressnet.com/bhealthy/symptoms.html
XXX said she told her story because she wants people to realize that negative Lyme Disease test results do not mean that people are Lyme Disease free.
Trout 
I have several people on my "Ld E-list" who will see themselves in her story. I see myself there, too, though I am now doing so much better after several years.
Stories like these are incredibly effective in educating the public. I just wish doctors had the time to read newspapers!
Ann - OH
Nakaa, thanks for posting.
My story was published in Aug. 04; I found the link and posted it on MP board.
Lymenet then posted it, and then I learned since it had an online site, readers could take the time to go in and give FEEDBACK OPINIONS on their online stories.
Just a thought,Luv, would you like us to give online comments about your story?
I've now been doing this since mine was on lymenet.
Our story went internationally; 1 leader was called from Germany since it listed her phone no. and many emails to the other co-chair. Again, thanks for sharing. Betty. Iowa