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Lyme Disease ForumsGeneral & Supportplease let Oprah hear about Lyme this week!
03/02/2009 11:03 AM
ellenelle
Posts: 4
New Member

I am forwarding a post from the producer of Under Our Skin that I got from one of my other Lyme groups. PLEASE EVERYONE -- make your voices heard at Oprah's site! This is finally our moment to have our say. It is very quick and easy to register if you are not a member; just use the appropriate URL below. Your message does not need to be long if you are too sick to write something longer.

Let's give the most powerful woman in television an OVERWHELMING mandate to tell our story.

Ellen

To become a member: https://www.oprah.com/mbr/mbr_new_profile.jsp

To post to the Lyme topic: http://www.oprah.com/community/thread/101903

Original message:

Forwarded from Open Eye producer Kris Newby

Oprah is deciding whether to do a show on Lyme THIS WEEK, and we need to

fill her comment board ASAP. According to the show producer, emails

directly to Oprah will NOT be read; you need to post here:

http://tinyurl.com/bqo8vo

[If you have trouble with this link, go to

http://www.oprah.com/community/thread/101903?start=0&tstart=0

or turn off your spy site blocking. If this link doesn't work, try copy

and paste rather than click]

Having Oprah feature Lyme disease will help the new bill in Congress and

it will pressure the new IDSA panel to do the right thing.

Can we please ask you to post (again) asking Dr. Oz and Oprah to do a

show on UNDER OUR SKIN, the documentary that exposes the truth about

Lyme disease?? (There are only 129 posts up there now.) Note that there

is a 200 word limit. The important thing is that you post a few words

about your personal story, not how long it is.

Here is how:

Here is the link where you can post a message - if you are already a

member of Oprah's community.

http://tinyurl.com/bqo8vo

If you are not a member of the Oprah community, you will need to sign up

first:

click on this link to sign up:

https://www.oprah.com/mbr/mbr_new_profile.jsp

Once you have filled out the appropriate info -- easy stuff, name,

username, email address, birth year -- then you will get an email to

your email address: You'll get an email from Oprah's web people sending

you an activation link that you will need to click on in order to get

started. Then you can click on the above link and post your comments.

I know this is a busy time for Lyme patient advocacy, but the Oprah

show's national exposure could save thousands of lives and buoy up all

of our individual efforts.

Thank you again for your help on this matter.

Kris

Under Our Skin

--- The discussion has been locked ---


03/02/2009 11:21 AM  Top
Canuck
Canuck  
Posts: 1674
Senior Member

Welcome ellenelle and thanks.. We have a few posts with these but as far as I am concerned the more the BETTER! Appreciate that, numbers are up to 616 now. Still not enough- put it on your Facebook status lines/walls/ myspace/email a request to all you know.. I hope this is the straw that breaks the camel's back if Oprah and Dr Oz DO SOMETHING. What a shame if they don't, with that power, one show. They could win the nobel prize for bringing the most controversial disease of the decade to the 'Lymelight'

Post edited by: Canuck, at: 03/02/2009 11:21

[b]Group Leader
Please take this advice as personal experience and not that of a medical professional. Sometimes experience is what makes us learn and help one another. Take the pieces you need, and always question, ask, with an open mind and heart...[/b]
Christina
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03/03/2009 05:18 PM  Top
ellenelle
Posts: 4
New Member

Posts are now well over 800! Please post if you haven't already. Again, it need not be long. Let's force them to take notice--make it over a thousand.
--- The discussion has been locked ---


03/03/2009 05:54 PM  Top
Canuck
Canuck  
Posts: 1674
Senior Member

POST ON THE BOARD--- We're doing IT!!!!! No worries of letters--just the board!

Kids in tub- be back laterSmile

[b]Group Leader
Please take this advice as personal experience and not that of a medical professional. Sometimes experience is what makes us learn and help one another. Take the pieces you need, and always question, ask, with an open mind and heart...[/b]
Christina
--- The discussion has been locked ---


03/03/2009 06:34 PM  Top
nonstop411
nonstop411  
Posts: 31
Member

Does this mean, just type here? I have an add on, I just relized this was National MS awarness month. I notices there is alot of people writting in that they were dignosed with MS and it was Lyme. My mom had MS. I'm looking for a doctor that would see her and getting no were! Feel like I'm on a race and going no where. My mom is running out of time the only thing she has left is her right hand and she's losing strenght, after that all independance goes out the window, she will become bed bound, her mind is good! Help!
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03/03/2009 06:54 PM  Top
nonstop411
nonstop411  
Posts: 31
Member

I'll Fly! I'll Fly! I'm there, I will go! 10 years just found doc. been on meds a week now! 5 day something is changing, and it's good!!!!

Walking still diffcult though.

Yes I can go! We have alot of lives to safe. We're all desperate!!!!

Let's make our lives worth living again!!!!!!

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03/03/2009 07:32 PM  Top
Canuck
Canuck  
Posts: 1674
Senior Member

YES!!! I do NOT mind anyone calling me a post 'whore'-- a means to an end- or a BEGINNING!- on Oprah's board I mean-saw you there before... I have posted info on the MS group here about the Lyme / MS connection and it had BETTER still be there, I don't think even the best docs know about the ineffective/inaccurate testing.. She needs an LLMD- where are you guys located? Send a msg if you need anything- am sending you one regarding MS in a few
[b]Group Leader
Please take this advice as personal experience and not that of a medical professional. Sometimes experience is what makes us learn and help one another. Take the pieces you need, and always question, ask, with an open mind and heart...[/b]
Christina
--- The discussion has been locked ---


03/03/2009 10:05 PM  Top
Canuck
Canuck  
Posts: 1674
Senior Member

[b]Group Leader
Please take this advice as personal experience and not that of a medical professional. Sometimes experience is what makes us learn and help one another. Take the pieces you need, and always question, ask, with an open mind and heart...[/b]
Christina
--- The discussion has been locked ---


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