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» LymeNet Flash » Questions and Discussion » Medical Questions » 3/3/09 MOST CURRENT UPDATE INFO FOR OPRAH/DR. OZ POSTING

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Author Topic: 3/3/09 MOST CURRENT UPDATE INFO FOR OPRAH/DR. OZ POSTING
Abxnomore
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This is the most up to date information:

Hello -

Thank you for your email and we understand the confusion surrounding this. Please know that your comments in this part of the Oprah site are crucial to us getting the attention of Oprah. Please read this note below from our PR person - Kathleen Fowler and it will explain everything. Also, please feel free to forward it to your community. Thanks again for your hard work!!!!


> First of all, thanks to everyone for emailing Oprah. You've done an amazing job!!!
>
> We keep getting questions about where to post -- in order to reach Oprah.... please spread the word and explain to people "why" we are asking people to do it the way we have instructed. I understand it is not the normal protocol. But there is a method to the madness -- hopefully this email will straighten up the confusion.
>
> The reason we want to post all these messages on the message board at this link: http://www.oprah.com/community/thread/101903 is because we want to be able to gauge the response! We CAN SEE WITH OUR OWN EYES, how many people are posting messages. Dr. Oz and Oprah's top producer and researcher will see it.
>
> Yes, the Harpo people are right -- typically people give show ideas at another area of the web site but we need to be able to gauge the response. If you do it the other way, we can't tell Dr. Oz and Oprah's producers that we know, that 1000 people have written to them, because we will have no idea how many people have written him. This is the only way, we can see for ourselves how many people are posting messages. This is why we are asking people to do it this way.
>
> If people want to send an additional message to the "show idea" link or if they want to email the producers (below) along with the other things they are doing ---- then we welcome it! But we are asking people to spend most of their free time and energy getting friends, family members, doctors, church members, co-workers, Lyme organizations from every country in the world, to post to the above link because we need that number to be BIG! Lyme is now on the front page of Oprah's community page because of all their hard work. Thanks by the way! It's a very big deal!
>
> So below are 2 possible links. Please the FIRST is the most important.
>
> *****MOST IMPORTANT --- MESSAGE BOARD LINK (PLEASE MOST IMPORTANTLY POST HERE - THIS IS WHERE WE NEED TO SEE BIG NUMBERS)
> http://www.oprah.com/community/thread/101903
>
>
> Optional EMAIL producers - (optional - email the producers)
> https://www.oprah.com/ord/plugform.jsp?plugId!6
>
> If you have any questions please contact me at [email protected]
>
> Kathleen
______________
Eve Morgenstern
Producer
Open Eye Pictures
________________________________________
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lakes592
Member
Member # 18905 posted 03-03-2009 07:27 PM03-03-2009 07:27 PM
________________________________________
Hi all,
As some of you know I have relapsed after 4 years with Lyme disease and have been very sick. My mom is flying out from California tomorrow to help me. I am making a call to action to family and friends.We are trying in the Lyme community to get a show on Oprah discussing Lyme disease and the Lyme disease documentary " Under our skin." We are very close to acheiving this and talks are in the works. We are up to over 700 posts but are shooting for 1,000 on her web site discussion page under Lyme disease. If anyone can help it would be greatly appreciated. Please forward to others who may know someone affected my Lyme disease as well.

You just go to www.oprah.com and create a log in then go to: http://www.oprah.com/community/thread/101903 and place a note asking for a show on Lyme disease. Thanks for your help.

Love,
Ann
________________________________________
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jam338
LymeNet Contributor
Member # 14002 posted 03-03-2009 07:49 PM03-03-2009 07:49 PM
________________________________________
The Oprah/Oz UNDER OUR SKIN thread count is now 824....keep posting!!!!
________________________________________
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[ 03-03-2009, 08:41 PM: Message edited by: Abxnomore ]

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Tracy9
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There are SIX topics on this page for this!!! Yikes! People probably get overwhelmed just by looking at all the subject lines!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Abxnomore
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We are up to 844 posts. Keep them coming. This is

really inspiring.

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Lymeblue
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Yep. I've tried to delete mine, since it is outdated but I just can't go through.

The function to delete it is not working UUGGHHH. Jenifer said it is closed though. But I really want it to be deleted NOW!!!

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bettyg
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.... 858 now; almost 1000; then 1500 is the goal!


she deleted mine which i started here letting all know about kris krafts post in activism...

i clicked on link; it was gone.

YES, WE NEED TO LIMIT TO ONE POST ONLY! taken me forever updating those here and then going to mdjunction.org and update that lyme board too!

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heiwalove
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so once we reach 1000 or 1500 then will we email in the show idea? i did both; posted on the message boards and plugged the show idea directly to oprah's staff. i'm still a little confused, as the harpo staff states clearly that the message board is for oprah.com members only, and will not reach oprah directly. ??

this is their exact message on the boards:

Hello, the Online Community is for Oprah.com members to share with other members, to find support, to form friendships etc. If members wish to submit show ideas or share their story with the Producers, then the 'Be on the Show' link from the Oprah.com Homepage is the way to go. Here is a link for your convenience: https://www.oprah.com/ord/plugform.jsp?plugId=216
Thank you for participating in our message boards. I'm sure other members also suffering from this dibilitating disease appreciate that you've shared your story with them.
Have a great day and please let me know if I can help answer any other community questions.
-HarpoBear, Oprah.com Community Producer

--------------------
http://www.myspace.com/violinexplosion

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Abxnomore
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heiwalove It looks like you have done everything

you need to have done. Kathleen Fowler and Open Eye

Productions are the ones who will be working with

Oprah to get a show on the air. They need us

to get out the responses and demonstrate that

there is indeed sufficient interest. Read the

letter from them again posted on the top. All

you can do now is encourage

everyone you know to post on the site at this link http://www.oprah.com/community/thread/101903

by sending

out group emails, making phone calls or whatever

way you can accomplish it.

Were now at 868! I sent out another group email

last night to everyone I could think of asking

for their help. We're not far from 1,000!

Keep them coming and post right here: http://www.oprah.com/community/thread/101903

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Abxnomore
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This post is for clarification due to the

confusion that occurred yesterday, March 3, 2009,

when Oprah's website posted the message below.

It is possible that they may post another such

post at another time.

Refer to the post at the top of this thread and

and read the letter from Kathy Fowler and

Open Eye Productions and keep posting on this

link http://www.oprah.com/community/thread/101903

even if the website posts this message again

telling you not to.

DISREGARD THE MESSAGE BELOW AND KEEP POSTING IN

THAT SECTION EVEN IF IT APPEARS AGAIN:

harpobear

3. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Mar 3, 2009 9:57 AM | In response to: onthemarcm
Hello, the Online Community is for Oprah.com members to share with other members, to find support, to form friendships etc. If members wish to submit show ideas or share their story with the Producers, then the 'Be on the Show' link from the Oprah.com Homepage is the way to go. Here is a link for your convenience: https://www.oprah.com/ord/plugform.jsp?plugId=216
Thank you for participating in our message boards. I'm sure other members also suffering from this dibilitating disease appreciate that you've shared your story with them.
Have a great day and please let me know if I can help answer any other community questions.

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sometimesdilly
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I suggest that at least one patient soul--with an intact brain-- SAVE to their own computer all the messages currently being posted about Lyme in Oprah's community forum.

There is such a huge outpouring of stories and effort and hope in that one place.... it would be a shame to lose that record, no matter what it is Oprah Winfrey decides to do.

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jam338
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There are 906 posts now!! Go team!! We can do it!

Dilly, you are right, hopefully someone can save these post stories. I am on slow dial up and bedridden so I can't.

It is obvious that lyme patients and their family members have spent a lot of time and effort to chronicle their story with lyme.

It is a very impressive and intellectually well written thread. Lots of good information on it that is patchwork quilt of stories/experiences/education that should be a real eye-opener for anyone.

Surely, this thread will not go unresponded to. But, no matter what Oprah Winfrey does or doesn't do, hopefully someone can use the stories to advance the ball forward whether it is on this court or another one.

There is content on that thread for anyone doing research for a book, newsletter, newspaper opinion piece.

In fact, after it reaches over 1,000 posts (which should be soon at the rate it is growing) it would be great if those who are capable, could use this foundation as a catalyst reason to fax letters advising about this current thread. It is newsworthy because it is something that is happening NOW.

Send emails with the thread link and/or fax letters with the thread information to:

-"leters to the editor" of your local newspaper and major city newspapers

-local and national TV

-send the link to competitor TV shows....if Oprah doesn't do it maybe someone else will if they see there is such a huge interest. We have to think outside the box!

-your senators

-your congressperson

-your doctors

Fax your doctors office and advise them that the Oprah thread exists. Many of them probably don't even know. Give them the link:
http://www.oprah.com/community/thread/101903

While many lyme doctors may not be comfortable with posting publicly, they may want to be in the loop to know this is even happening.

Nearly a 1,000 posts no small thing. We will soon cross the threshold of the most posts Oprah has ever received on any subject!

When she did the recent show(s)on bio-identical hormones, she said she knew the subject was controversial, but she had received over 1,000 posts on her website and that many public pleas could not go ignored.

There is a message there for us. They are monitoring, and if we top the number of posts that brought the bio-identical hormone subject show forward.......there is hope she or someone will respond to this outpouring of human tragedy stories.

We should not put all our eggs all in one basket with Oprah though. There is no guarantee she take on this controversial issue just because she did so with the bio-identical hormone show.

We need to use this event and timing opportunity as a new reason to write letters to all the other sources about this outpouring of human stories that is occurring NOW on Oprah.com.

Somewhere someone....the right person....will read it and get the information made public.

To post: create a log in on Oprah.com

To read the posts on the lyme thread:
http://www.oprah.com/community/thread/101903

At the bottom right of the page click on the highest page number and it will take you to the most recent post page. Each post is numbered, so you can see how many posts have been made.

We can hopefully top a 1,000 soon.....and then keep going.....please tell your family's story.

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bettyg
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all i can ever read are 10-15 posts; can't see any of past, etc.

can you? i'd love to read more of these, an no way for me to copy them!!

BUT I AGREE WITH DILLY; SOMEONE OR 2 FOLKS, please copy these.

they deleted before ALL the posts we had over 200 on our previous attempt and redid their board or something similar to that!!!

***

they could also be used in a CLASS ACTION LAWSUIT, and PLEASE GO TO ACTIVISM to read the latest on their by a CHRONIC LYME LAWYER!!!

****

...now 910 !! 90 to 1000; whoopie ding!

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Abxnomore
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Betty, there is a drop down on the site that says

"sort by" right across from replies 920. Click

"newest first" and then next to that "items per

page" click "50" and you should be able to see

every post on the site. When you get to the end

of the page hit next.

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bettyg
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abx, i've tried that! i do get current and even if i show 50; i still get only 15-20 and then it cuts off what they are saying!!

also when i posted my 1st 2 posts, it posted computer programming codes vs. my text!!

i don't have any viruses/worms.

it's disgusting!! but thanks for suggestions! i was doing that [Smile]

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sometimesdilly
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ok. i'm in the process of doing my best to save all the posts.

the word doc i'm saving them into is now over 550 pages long and i am only on the 700th or so post to Oprah.

Hopefully there will be an intact word document at the end of this process, tho my compujter keeps telling me that i have exceeded Word's memory (heh).

Have no idea where to post the thing if i can capture it all, but anyone who is interested, let me know and I'll try.

PS-- It is WAY too long to post here at LN....

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Abxnomore
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Wow, it's great that you are doing this. Thank

you so much. I thought about printing it out but

figured it would take a week! I have no clue as to

how to go about saving it. I really think it's

an excellent idea for someone to have all of this

information saved. One never knows when we might

need it. Thanks again.

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jam338
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Dilly well bless your heart for doing that for us all!!! wow, what wonderful thing to do!! Thank you!!

We are now at 987 posts everyone...good job!!! By tomorrow morning it will be over 1,000 for sure....but, we need to keep going.

The multitude of stories on that thread is just incredible. It is obvious that people have put lots of thought and heart into their posts, especially the ones from parents about their children. Just heartbreaking.

If nothing else gets their attention the parents/children posts should touch a compassionate part of anyone's heart. Let's hope so.

http://www.oprah.com/community/thread/101903

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bettyg
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.... 997; 3 more and i just left another post i'm posting below!! 1500 here we come!


tracy, HEARTFELT THANKS FOR DOING THIS on behalf of all of us! [Smile]


Oprah and Dr. Oz,

HOT OFF THE PRESS last week!!

The latest book, 3 of 3 series IT'S ALL IN YOUR HEAD by PJ LANGHOFF titled:

THE BAKER'S DOZEN & THE LUNATIC FRIDGE!

Has junk science shifted thru the Lyme disease paradigm?

526 pages discussing the IDSA's lyme guidelines, etc. and including OVER 1000 LINKS of info galore on what the IDSA infectius drs. on the panel have done for work: patents, grants, you name it!!

PJ discusses too UNDER OUR SKIN, Pam Weinbaugh's CURE UNKNOWN recent book, and many other things.



I have just started it, and it takes me 5 minutes per page to read the small print for someone like me with LOW vision and try to read/comprehend it after 39 years of CHRONIC LYME DISEASE!

Yes, I've had chronic lyme for 39 years; 34.5 years MISDIAGNOSED by 40-50 drs. with every illness/symptom you can imagine!



Please do a show on UNDER OUR SKIN lyme documentary by Andy Wilson and then have at least TWO follow-up shows because you can NOT begin to discuss the lyme war controversy in 45 minutes only allowing for your commercials!!

Under our Skin deals it like it is and finally the things UNDER THE RUG are brought out into the open and laid into the public's lap.



Oprah, if Stedman or Gale were to be diagnosed with lyme and/or co-infections, you'd be there promptly calling the best drs. in USA and internationally who know the most about lyme disease.



You can afford to help Stedman and Gale and still have many millions and perhaps billions of $$ to help other lyme folks with


EDITED ... with a malaria-like coinfection--- babesia.

note: i can't edit oprah's ONLINE but i can correct my oversight; i get this wrong every time betweens babs and bart; i can't remember. thanks pam!! [Smile]


But we with chronic lyme, the MAJORITY, can not afford the HUGE OUT OF POCKET $$ for our LLMD, lyme literate MD appts., treatments, driving out of state to llmds where they do NOT exist in our states, lodging/food, labs, and the costs go on and on especially those with IV antibiotics.

* Majority have lost:
* their jobs;
* their health insurance on what they might pay for NOT lyme related;
* their marriages/divorce;
* custody of their kids;
* homes;
* bankruptcy;
* homeless;
* and the ultimate ... SUICIDE since they can no longer go on due to 24/7 pain, have nothing to live for anymore since it's all gone, and deep depression!



We want our voices heard and shown the RESPECT we deserve instead of the ignorant drs. mentality of, "IT'S ALL IN YOUR HEAD"!!



We want empathy, understanding, a shoulder to cry on or a friend to talk to when we have bottomed out; we don't want anyone's sympathy!



Please do the world a favor and have shows on chronic lyme/co-infections diseases starting with a show on UNDER OUR SKIN lyme documentary.



My heartfelt thanks for doing this Oprah and Dr. Oz!! We so enjoy his shows with you!! [Smile]

BettyG, IOWA lyme activist

[ 03-06-2009, 11:13 AM: Message edited by: bettyg ]

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bettyg
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update; a mysterious little birdie told me we may be hearing THIS WEEKEND what the decision is on this,

and NO, DON'T ASK ME ANYTHING MORE! we'll post as soon as anything is official ok!!


WHOOPIE DING!!

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Dancer
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I think the idea of saving the comments from Oprah board is very smart. Before posting them somewhere else however, you need to look into whether there are copyright issues - do all posts become the property of Oprah.com. Just a thought.

I am saving PDF files of all the comment pages. I might be able to provide a home for them on my local support group's website. But would want to look into the legal issue first. Good to have backup copies in case they disappear off Oprah.com.

Thanks for the heads up, I'll be looking forward to the weekend!

All best
Dancer

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sometimesdilly
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Hi Dancer! Good question about the copyright. for myself, had no thought of posting the comments anywhere, just didn't want all that effort to vanish without a trace.

i'm glad you're saving the comments too. PDF file, eh? never occurred to me.... [Smile]

And Betty... we don't even get to ASK about that "whoopie ding!!" ???? [Smile]

Hmm.

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lakes592
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Checked this morning and it is over 1,000. People I have written to are posting this on school websites ect. They have students with Lyme, so it should get even bigger!


Ann

--------------------
If you keep doing nothing...nothing changes!

www.underourskin.com

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bettyg
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ann, wonderful idea!! yes, many kids are effected and HOME SCHOOLED!! [Smile] THANKS!


we did it!!

.... 1 0 4 2 and climbing!! whoopie!

1500 here we come!

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bettyg
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dilly, sorry, i missed the earlier posts, and my whoopie ding! this explains a LITTLE more about the surprise1!


FLASH UPDATE!! IMPORTANT!!

03/05/2009 11:58
Canuck
Lime Green Ribbon
Posts: 787
Group Leader


TODAY IS THE DAY GUYS AND GALS!THEY ARE LOOKING TODAY AND TOMORROW AT THIS BOARD- RIGHT NOW THEY ARE LOOKING!!!!!
****************************


IF ANY DAY WERE IMPORTANT IT IS THIS ONE>>
POST WHAT YOU CAN NOW!

In the next four hours--DO IT!
*********************************

I am so please with the responses but will say again- we almost have that many in this group alone..

So pass it on, beg your family and friends if you have to- send some guilt, whatever it TAKES! I am not ashamed of guilting someone into something at this point...

1057 is the count for now

----------

... 1060 now !! POST, POST, POST!!
***************************************

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Abxnomore
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Up! Has every one written a post on Oprah's site?

If not, please do so and ask everyone you know to

do so, as well

http://www.oprah.com/community/thread/101903

We're up to 1,092 posts......keep them coming.

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bettyg
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...1106; wow, the momentum keeps building!
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Abxnomore
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It's now 1,128!..... I've run out of friends and

family to nag! But, I've sent out continual

updates and reminders urging everyone to spread the

word.

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bettyg
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also, when you go there; have you looked for any PRIVATE MESSAGES folks send us including HARPO BOARD MODERATORS?
*******************


i had things there from dec; i just never see that i have MAIL WAITING!! so check that out.


... 1131 now!

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Abxnomore
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up...........1,152 posts and counting!
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bettyg
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last no. before moderators left tonight .. 1158 !!
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lakes592
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Hi,
I noticed it is dying down over there we switched from the first hot topic to the third.

Wanted to say let's keep it going. I made an announcement at the end of the screening Thursday night for " under our skin." Telling everyone the goal and asking them to write in and ask family and friends too as well.

Perhaps this weekend all of us can update family and friends via e-mail on the numbers and ask once again if everyone has done it?

This what I sent out:Hi all,
Just an update I have been very sick but my mom is now here from California to help out. I also wanted to update on the status of a possible show in the works on Oprah. The count is now up to 1,128 and the goal is 1,500 so if anyone hasn't posted as of yet, if you could log in and post under the hot topic of Dr. Oz and Lyme or go in under discussion then Lyme disease it would be greatly appreciated! Here is a link to the documentary that is being discussed: http://www.snagfilms.com/films/title/under_our_skin/ reminder to please join in and post to the Oprah show.

Thanks so much, Ann

--------------------
If you keep doing nothing...nothing changes!

www.underourskin.com

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bettyg
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.... 1167 now!!

NOPE, no news yet on what NY decided after thursday's meeting with the VIPs involved!!

i'll advise as soon as my source gets it!!

yes, up for WEEKEND WARRIORS; we need your posts on oprah's thread:


http://www.oprah.com/community/threads/101903?numResults=15&filter=newest


you need to register and they send confirmation; you need to click to be signed up and you're ready to go! let's hit 1500; then my next goal of 2000 !!! it's all possible; we got around almost 1000 posts in 1.5 DAYS!!

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lpkayak
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whoa!!!!! Betty...thanks for keeping us focussed!

--------------------
Lyme? Its complicated. Educate yourself.

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bettyg
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...1173 ... now

my guess why we're not on HOT TOPICS is because a few people met in NY last thursday to discuss an under our skin/dr. oz/oprah tv show. NO decision so far, and being strongly considered.


so my guess it is in connection with last week's meeting, and them telling us constantly ... DON'T post there; post on show area!

KEEP YOUR FINGERS/TOES/and anything else you can think of for YES for our lyme tv show!! [Smile] xox

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seekhelp
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Any chance this could backfire and Oprah could make us look like idiots and support the IDSA?

As wealthy as Oprah is, does she have stake in any insurance companies? Just wondering.

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Larkspur
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Seek - I doubt it. Dr OZ has already done a radio show on Under Our Skin indicating he is willing to give us a somewhat fair platform

Also, Oprah recently did a show featuring bioidentical hormones - the mainstream medical community hates this issue!

[ 03-08-2009, 11:44 AM: Message edited by: Larkspur ]

--------------------
"We must be willing to get rid of
the life we've planned, so as to have the life that is waiting for us" - e.m. forster

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seekhelp
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Whew..that's good [email protected] I'd hate to see this make things worse.
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seekhelp
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Whew..that's good [email protected] I'd hate to see this make things worse.
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bettyg
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... 1189 now; almost 1200 and 300 more to go to my next goal!! yippee!

please think POSITIVE THOUGHTS ONLY; 2009 is finally going to be our LYME DISEASE PROGRESS YEAR ...

oprah tv show
our 2 legislative bills being put on SCHEDULES of house and senate;

PASSED by both, and signed off by PRES. OBAMA !!

it is possible, and none of us are giving up right! I'M NOT! [Smile]

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heiwalove
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it's really slowing down to a trickle.. we need more posts!

--------------------
http://www.myspace.com/violinexplosion

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bettyg
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...oprah, 1201 posters now.

1 new poster did state about the man shooting his pastor due to lyme and about the chimp!

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bettyg
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someone just posted entire article of the shooting above with all the lyme info in it.

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jam338
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Betty, any news yet on the negotiation meetings for the show?
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bettyg
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not yet, and when it's ANNOUNCED; i'll post PROMPTLY ON ALL OPRAH LINKS WE HAVE GOING ON!!!
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bettyg
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..1229 ... less than 250 to meet my goal of 1500 then let' go for 2000 !! we can do it gang!!

many touching stories there... [Smile]

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bettyg
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bettyg
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bettyg
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now 1251; slowing down folks; can we post another 249 to make it 1500 even?? YES, WE CAN; YES, WE CAN [Smile] xox
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bettyg
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folks, we are running out of gas; can we get another 241 to make 1500 posts there? i bet we can since it's the LONG WEEKEND; ok, it's a regular weekend for you. lol

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bettyg
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