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Channel 5 in Chicago did a piece about the "mystery Disease"

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Posted 6/25/2009 2:16 PM (GMT 0)
Last night's 10pm news did a spot about LD, about how hard it is to diagnosis and how most doctors don't recognize the signs and symptoms.  They also mentioned the controversy with the IDSA and the showing of Under Our Skin on Sunday June 28th at the Music Box Theatre.  This is the first time I've ever seen LD mentioned on the 10pm news and the numbers are growing in Illinois.

KO

Posted 6/25/2009 2:34 PM (GMT 0)
Thanks for sharing. That's fantastic!
Posted 6/25/2009 2:36 PM (GMT 0)
Does anyone have any news on the status of Oprah doing a show on Lyme Disease? A while back there was quite a bit of talk and posts about her making a decision whether to do a show on LD or not.
Posted 6/25/2009 4:06 PM (GMT 0)
here's a link to the page on nbc you can add your story or comments every bit of good publicity helps raise awareness to this disease.

http://www.nbcchicago.com/results/?keywords=mystery+disease  

abc news chicago is supposed to do another story tonight on 10 pm news.  

Posted 6/25/2009 10:59 PM (GMT 0)
i sent in a letter to Oprah, about a month ago and as of yet not gotten a reply. i also called my local news station here and they called me back once but nothing else.

for those of you who are able to get covage thats great, i am still praying the flood will move to Tx. soon.
Posted 6/26/2009 1:35 AM (GMT 0)
This is a wonderful thing. This all has not yet hit Ohio. That is for sure. There was an article in my local news paper the other day about Lyme I thought it was a good thing until i read it. It supported the old IDSA theorys and whats more the infectious disease doctor who told me it wasnt lyme was quoted through out the whole thing. I tried to call to tell them the truth and what was going on in connecticut with richard blumenthal , she said we arent interested in doing another article about lyme at this time. And when i told her the antitrust details all she said was " Antitrust? , thats a legal term" No crap! So this news paper will be the last to get it right thats for sure.
Posted 6/26/2009 2:58 AM (GMT 0)
v did you try other papers in your area to wright a story from the lyme side of life? or maybe your local TV stations?

you never know they may help get your side of it out. so many are not in the dark.
Posted 6/26/2009 5:38 AM (GMT 0)
You know, i will, thanks!!!!!!!!!
Posted 6/26/2009 5:57 AM (GMT 0)
You go Girls!!
Posted 6/26/2009 6:00 AM (GMT 0)
Hahaaa!!!!!! thanks Scorpio, your awesome!
Posted 6/26/2009 6:06 AM (GMT 0)
veromia333

Did you say you live in Ohio? The paper you are talking about isn't The Tribune is it?
Posted 6/26/2009 6:11 AM (GMT 0)
Thanks! Sometimes the brain is not working enough to say what I really want to say but I try. lol

My writing abilities are certainly not what they use to be and I try to lay low when I realize I'm not at my best. Well, today after reading RD's post I had the nerve to go and write a rant to Oprah and Dr. Oz. Heck, she helps everbody and anybody and I can't understand why she is not interested in us poor lymies. LOL I wish I would have waited until I was a little less hot headed and a little more capable. Oh well, I guess I'll blame it on the Lyme! LOL
Posted 6/26/2009 6:47 AM (GMT 0)
scorpio. dont hold your breath on Oprah, i sent in a letter to her over a month ago and still havent got a responce to it. and yes i agree she helps so many and some who i dont belive need it but what can we do. its her show and her money to give away.

just wish it was to help more who really need it . like getting the word and knowledge out about lyme disease.

I wish you all the best.
Posted 6/26/2009 6:54 AM (GMT 0)
veromia333

OMG! I just saw in your profile that you live near me! I am in Liberty.

Is this the article that you are talking about?
http://www.tribtoday.com/page/content.detail/id/523769.html

If so I have a story for you!

My family has 3 generations of Lyme. My mom, myself, my brother, and my 2 sons. You might have seen us on the news in May?

We called both the local papers to get interviewed to post our story. The Vindicator either published our article and we missed it or didn't. They won't call us back.

The Tribune posted this article instead of ours! She interviewed my mom and I and my son. Then ignored our calls and emails for weeks. Then we pick up the paper the other day and find this article! I have posted in on other Lyme sites. We all tried to leave comments but they took them off. Some people have written letters to the editor.

My mom and I are trying to find a way to retaliate! We are reallly mad that she did this. We gave her a ton of info with the truth about Lyme. Not only did she ignore it and only printed with the local doctor said, but she didn't even print our article about our family.

Wow! I can't believe you live so close to me. I know many people in Ohio with Lyme but noone near me. LOL I am on Lymenet a lot and a few other sites. Haven't been on this one too much though.

Amy
Posted 6/26/2009 7:07 AM (GMT 0)
Thanks RD. I'm not holding my breath. I wrote a decent post to her a few months ago but think today's little hissy fit of a post was just to let off steam. I am mad at so many people and need to find a way to turn it around. How can so many people be so darn ignorant, cold and uncaring. If our disease had another name, people would be falling over themselves to help us. It's just not fair! Oh no, I feel another hissy fit coming on so I better go to bed now. LOL

Hope you have a goodnight!
Posted 6/26/2009 7:09 AM (GMT 0)
Amy, That's horrible but somehow not too shocking. I'm sorry.
Posted 6/26/2009 7:17 AM (GMT 0)
Hi I think I read something about you on myspace. And saw your story you connect to the news clip. We should get together to do something!!!!!
Email me if you want to gather info to take to one of the tv stations.
Posted 6/26/2009 7:23 AM (GMT 0)
I spoke w the same lady i believe and she said they used credible infomation scources. I told her about the IDSA and the antitrust review , she said it hasnt been changed yet!!! And she just was dont get me started I will start getting my posts deleted.

but basically i will call back you just ask to speak w someone who write articles dont say your calling about lyme.
Posted 6/27/2009 7:09 AM (GMT 0)
Hi, It's Marianne---Amy's mom. Jean Corliss from the Tribune did that article in spite of interviewing us and we told her everything about Lyme disease, then she interviewed others and printed an article that was the exact opposite of what we told her. If interested, anyone can contact me for other's names and addresses at the paper there who are above her. I am not finished with dealing with her yet.
Posted 6/27/2009 8:33 AM (GMT 0)
I think having Oprah do anything about Lyme would be a big mistake. She'll go to the "experts" at Yale or the ISDA and then everyone will get the wrong information about Lyme. Once she does the story, it will set us back years.
Posted 6/28/2009 5:04 AM (GMT 0)
Hope to see some Lymies at the Music Box Theater today 1pm. 2 Lyme Literate Dr.'s and Mandy will be there for the Q & A session afterwards.

Arrive early...parking will be tricky
Posted 7/1/2009 1:26 AM (GMT 0)
Thanks for those of you that purchased tickets online to support the event at the Music Box.

NBC affiliates in Philadelphia, San Fransisco and New York have picked up on the segment Nesita Kwan did and have in online in their health sections.

There is a place for people to leave comments. On the Chicago NBC site there are over 35 comments of people sharing their stories with Chronic Lyme. Post YOUR stories on these sites too.
Posted 7/1/2009 3:21 AM (GMT 0)
thank you Gracie's mom, To see the compliment feels so good.
And kudos to you for all the help and encouragement you give to us all.
thank you weary1.
KO-im so happy you are getting some truth there, im afraid we are behind where i am , but im going to try to help that.

i love being a part of this it really has changed my life.
Posted 7/1/2009 2:03 PM (GMT 0)
Thank you Gracie's Mom :)

You and Gracie, Sojourner and Heath and Ticker have been such an inspiration and encouragement to me. I so appreciate all that you all are doing and am so blessed to have spent time with you all.

Praying for great things this month on July 30th.
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