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» LymeNet Flash » Questions and Discussion » Activism » HELP! TELL OPRAH ABOUT LYME

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Author Topic: HELP! TELL OPRAH ABOUT LYME
KrisKraft
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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

Having Oprah feature Lyme will help the new bill in Congress and it will pressure the new IDSA panel to do the right thing.

Note that there is a 200 word limit. The important thing is that you post a paragraph or two about your personal story, not how long it is.

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.)

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.

It sounds harder than it is, if you haven't done it before.
Thanks so much for your efforts.

--------------------
KrisKraft
www.lymediseasefilm.com

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bettyg
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kris, OPRAH'S DECIDING ON SHOW THIS WEEK!
******************************************

i'll send your note to ALL ON MY LYME GROUP LIST!!


here's what i just sent!

* Oprah and Dr. Oz, please do a show on CHRONIC LYME/CO-INFECTION DISEASES that have robbed us of QUALITY OF LIFE for these reasons:
* You have a world-wide viewing audience that can be EDUCATED with the facts of lyme/co-infections so they can be trained on how to AVOID BEING BITTEN BY TICKS, ETC.
* Audience will find out about the lyme war of bad drs, IDSA/INFECTIOUS DISEASE SOCIETY OF AMERICA,
* vs. GOOD, chronic lyme literate mds, LLMDS, ILADS/INTL. LYME-ASSOCIATED DISEASE SOCIETY.
* They will learn IDSA treats up to max of 3 wks. and DOESN'T believe in chronic lyme but UNDERTREATING causes patients to become CHRONC LYME!
* UNDER OUR SKIN lyme documentary really tells it like it is: IDSA drs. being paid for patents/grants, etc.
* IDSA's 06 lyme guidelines have screwed us because they don't allow for long-term antibiotics and other altenative therapies!
* Our health insurance companies REFUSE to pay for lyme treatments, labs, visits, etc.
* Many have lost EVERYTHING: jobs, health insurance, spouses/kids, homes, bankruptcy, and SUICIDAL DEATHS!
* Thank you Oprah and Dr. Oz! xox

iowabettyg

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bettyg
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deb,

it's in activism posted by kris kraft, under our skin, and i copied it to support as well.


then there are dr. oz posts on each board i believe.

160 is NOT enough in deed.

i'll go post this at mdjunction's lyme site IF it isn't there already.

thanks for writing and giving us current reply count! [group hug] [kiss]

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bettyg
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i copied kris's note and pasted to mdjunction.org lyme board; 900 folks there should really bring up the totals writing to oprah and oz!!
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Tincup
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Can someone write a note explaining that people with Lyme are having great difficulty trying to navigate the site?

I'd do it but I've already posted once.

It is not eye friendly, nor neuro friendly... and it is time consuming.

Having to sign in and then find your way back.. well not fun for me.

I tried three times... the last time taking me 40 minutes to do it.

But I finally posted a short note.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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lovingattitude
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I had a difficult time too, but did manage to get there.
I also posted a quick note about the difficulty in navigating the site.

--------------------
-Love and Gratitude

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Munch
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Help?!

I'm trying to get the tinyurl link listed above to work but it's not taking me to anything.

Where on Oprah's community should this get posted? Is there a thread number?

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bettyg
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munch,

try this direct one to post, but you must sign in OR REGISTER FIRST TO REPLY OK!

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


tincup, i'm writing oprah's TECHNICAL support per harpo's moderator's request; i'll copy your comments and then show them what went wrong with my 2 previous attempts also!

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Robin123
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I wrote quite a statement, and then it wasn't accepted, saying there was a processing error. I was signed in, too.

Is this happening to others here? I wrote to technical about it. Very disappointing, after putting some time into writing it.

The good news is, we're now the #1 hot discussion topic on Oprah! With 364 posts as of this evening, and who knows how many of us who aren't getting through!

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ticked-offinNc
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help, after signing in, how do you post?what do you click on?thank you
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bettyg
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TICKEDOFF,

after signing in, it might show her FRONT PAGE, look on RIGHT side for post on LYME NO. 1 or so...
click on name of dr. oz, etc.

now go down and where it shows REPLY, START THERE!

i advise you also to copy your post before posting!! MANY HAVE BEEN LOST OR NOT POSTED so all your efforts are NOT wasted!!!

****************

KRIS KRAFT .. please update us and read this below!!


Click to view lakes592's profile
lakes592
Level 1
#62. Re: Oprah, Dr. Oz and Lyme disease film UNDER OUR SKIN
Feb 25, 2009 7:19 PM | In response to: onthemarcm



Hi, unfortunately Ms. Winfrey's schedule doesn't allow time to read or respond to the message boards.

If you wish to contact Oprah or her staff, or send in a show idea please click EMAIL US from the Oprah.com drop down menu.

Additionally, members can submit show ideas by clicking the 'Be on the Show' link from the Oprah.com homepage. Thanks and have a great day!

-HarpoBear, Oprah.com Community Producer
*****************************************
*****************************************

Hi all,
Just saw this looks like we may be barking up the wrong tree with just posting. Looks like we need to do what is mentioned above to make a show request. I will try this route?

OXYGENBABE/ Ann

*****************

kris, can you find out anything else since oprah's site is really giving ALL OF US SO MUCH TROUBLE about getting registered, ACCEPTING OUR POSTS, etc.

my posts it adds all the computer programming coding vs. MY TYPED TEXT! i tried 3 times; 2 times it did it; didn't look to see if they posted my last one or not.


i also posted a memorial to karl j, 34, who died, and was buried yesterday. i can't get back to that area to see IF IT WAS POSTED OR NOT!


thanks kris for any/all help you can give us.

when you were told, "she'll decide this week" ..

did you ask meaning FRI, SAT., OR SUN? or extending past today??? thanks for clarifying.


WE'VE ALL GOT OUR FINGERS CROSSED AT THIS BEING SUCCESSFULLY DONE AND SHOWN ON TV!! xox

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bebfire
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Check out the link below...

This is on the Oprah site and its a show with Andy Abrahams Wilson, producer of Under our Skin, and Dr. OZ. It's a short interview from Dr. Oz's radio program that is very very good, however, I do hope this isn't the end of the lyme story on Oprah.

I searched the entire Oprah site and after searching the hottest topics and up and coming shows, Lyme Disease does not come up. Click on this link and listen. You might have to download Adobe Flash 10 to open the interview.
Oprah

--------------------
The Lord is my strength and my song

CDC/Igenex- Positive
IGG 31+/- 34+/- 41++
IGM 23-25+++ 31+ 34+/- 39+/- 41+

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ticked-offinNc
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Thank you Betty,

I figured out the reply button, then it wouldnt let me log in,said I did not have the right password. will keep trying.xoxox

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bettyg
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483 now including these 2:

...06 former OLYMPIC SKATER

...MANDY HUGHES from under our skin, who stated that lyme means

LISTEN
YOU
MUST
EDUCATE

PLUS several MDs have signed too of the 15 messages it allowed me to read ....

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bettyg
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/// 545 ... still CLIMBING UP!
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bettyg
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....545 now!! we made 500; now 1000 !!
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Robin123
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Great news on the number!

I can't get any posts through. So what's the trick? Anyone know?

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hurtingramma
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...612 Let's keep them coming!

--------------------
"Few of us can do great things, but all of us can do small things with great love". Mother Theresa

http://www.facebook.com/profile.php?id=1629665573&ref=name

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bettyg
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....649 ... keep them coming!
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bettyg
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...655; even a small-town CONN. newspaper editor wrote in saying he featured a lyme article about UNDER OUR SKIN and has NEVER HAD SO MANY EDITORIAL FEEDBACK EVER!! he encouraged to have a show!!
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bettyg
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...663
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Abxnomore
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Please read this. It's very important.

Any ideas how to get around this. The misinformation is ridiculous

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/78132

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Robin123
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792! keep 'em coming...
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Dekrator48
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It's true....we are posting in the wrong place.

Our blog posts are a community discussion only.

To request that Oprah does a show on lyme we have to send a message under the "Be on the Show" heading.

On the medical questions board in the post "Oprahs staff member requesting next step...." you will see my post explaining the trouble I had sending a message under "Be on the Show" due to the 2000 character limit...about 16 lines.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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bettyg
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dek,

was either 1-2 yrs. ago we had over 200 plus emails in THE CORRECT "SHOW" SPOT, and made no differene!! they just kept ignoring us. frustrating.


i hope KRIS KRAFT WILL COME ON AND GIVE US CORRECT, ADDITIONAL INFO since she got this latest flurry of emails to oprah's boards!!

thx abx for calling EVE!!

abx, did you email andy since i gave you his email?

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ellenluba
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Hi folks,
I just spoke to Under Our SKin for clarification.

We need to KEEP POSTING AT OPRAH'S COMMUNITY BOARD AS WE HAVE BEEN DOING.
http://www.oprah.com/community/thread/101903

That's because the strategy is that we are writing so that the PR firm for Under Our Skin has leverage in encouraging Oprah's company to give us a show. The above site is the only site where the PR company can know how many letters are sent to Oprah.

Below is the , slightly abridged letter that the PR firm, On the Marc Media, has sent out to us.
Ellen
________________________________________________
POST FROM UNDER OUR SKIN/ ON THE MARC MEDIA:

"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 {Oprah's production company) 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.

.... 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!


*****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]

--------------------

--------------------


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bettyg
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... 814 ... NOW!! less than 200 for 1000 !!
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Abxnomore
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Here is the full test just repeating more of the above. Everything is cool. We have done it right!

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]a.com
>
> Kathleen
______________
Eve Morgenstern
Producer
Open Eye Pictures

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ellenluba
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Yes. We have done it right.

Now, we could do it even more right if we get friends and family to write. We have, apparently, not so much time before Oprah makes a decision , so we need to pull out all the stops.

I had written to friends asking them to do this, but just followed up with calls to nag them more.

We may wind up with fewer friends because of nagging them this way, but who needs friends if
we have Oprah [Smile]
Ellen

--------------------


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mtree
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Ok...trying this agian...

this is from Open eye Picture...got it from my email...

[hi] mtree
http://hosted.verticalresponse.com/303550/444497dfb5/1309003029/05830b00cd/

--------------------
worrying about tomorrow takes its strength away from today

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bettyg
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.... 858 ... less than 150 for 1000 !!!

then 1500 will be our next goal!; we can do it folks!

yes, i too, got the email from openeye on the above too, and posted some of that info elsewhere.

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lostgurl
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We're doing it!

I want to take a minute to thank Kathy from the bottom of my heart, and on behalf of ALL of the people who suffer with Lyme..


Kathy Fowler is a medical reporter at Washington, D.C.'s ABC affiliate WJLA-TV.[1] She has been reporting on medical breakthroughs, the healthcare system and everyday health issues affecting American's lives for more than 10 years.

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/394374-we-thank-you-kathy-fowler-silverstein#394374

Canuck Wiki: (what I remember so if anything is incorrect, Kathy let me know)

Kathy was in a horrifying car accident when she was around the age of 19. She wasn't found for 8 hrs and fought for her life while stranded in a field with life threatening injuries.. During this time, she was probably bitten/ infected with Lyme and Co.

She did have a bullseye rash on her knee, and when she was in the hospital, her injuries were more 'important' of course, and they did see this rash, said it's 'probably Lyme' and gave her a short course of antibiotics..

It was ten years later that Kathy started to have problems prompting her to seek the truth. Neurological aspects of Lyme had started to tell her she wasn't okay. I believe she had been given a diagnosis of legionnaires at the age of 25 and when she really started having so many neurological problems along with immune system deficiency (which we all seem to suffer from) she was told to pursue the possibility of Lyme. People had mentioned it from time to time, it struck a cord and she started researching. Much like the rest of us, she soon learned about this illness and how detrimental it can be as she too suffered with Chronic Lyme..

Much like me, she knew to pursue a story when she was told to leave well enough alone. There was something THERE.. A truth that had to be discovered and told..

So, Kathy soon helped shed the Lyme light on an acquaintance- Dr. Oz. She prompted him to do a show on the film Under Our Skin, and about Lyme Disease... Thanks to her, we now have a chance at this illness finally getting some recognition by mainstream, the media, the general public, the world.. Sometimes it takes Oprah and her platforms to better us as human beings. So be it!

I am ever so thankful for all you have done for us Kathy.. This without a doubt- should win the Nobel Prize for the most controversial diseases of this century.. You have brought about change and have been recognized for your former achievements..

With this we give great recognition, and I know you will be remembered as one of the key players here.

Bless you and may you be healthy for years to come

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bettyg
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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, 11:14 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!! [Smile]

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Robin123
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Midnight, west coast time...997...tick, tick, tick!
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Robin123
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I was still up tonite and reading some of these stories when the count shot up to 1011 - we are over 1000 posts!!

Please read them. They are very moving stories of our past, present and future.

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imagine2
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YAYYYYYYYYYYYYYY!!!!!!
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bettyg
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robin, did they print my letter above; i think i copied it here .... would have been around 1000 ??

i can read only 10-15 max even if i chose 50; latest! i reported this to o's tech support folks!! disgusting.


we did it!!

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

1500 here we come!

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MissMari
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Here's my post (best I could do -- on antibiotics for just over a week and brain not working too well!):

Dear Oprah and Dr Oz,

I'm a former nurse and lab tech (microbiology), and I am always concerned that what happened to me (as a medical person) could be devastating to someone without a medical background.

After over 14 years of numerous specialists, thousands upon thousands of dollars in diagnostic testing, nearly a dozen diagnoses (none of which had ANY abnormal test results to justify them), and thousands of more dollars spent on treatments that (obviously) were worthless to say the least / harmful to say the worst....

I FINALLY was justified with a diagnosis of Chronic Lyme Disease.

It was the ONE abnormal test result I DID have, 5 years after my tick bite and EM rash.

And that was 9 years ago.

I received one course of antibiotics, another blood test, and was then told by my doctor (whom I had known for years), that I "didnt have Lyme; never had it" as he left the exam room and WALKED AWAY from me.

Since then, he retired, his replacement is FIRM that I have rheumatoid arthritis (despite no abnormal tests) and treated me for it, for the past 8 years.

In those years I have lost my job, my health insurance, my family, friends. Each month is a struggle to keep my own apartment and car. I have numerous multi-system symptoms (including neurocognitive ones such as ---- forgetting where I live, or how to put a key in a lock, or the word "clock"...).

It took me this long to find a Lyme-literate dr to diagnose and treat me.

No one should have to become desperate, not due to their illness, but due to lack of understanding and care.

Mari R

--------------------
The Bite: July 1995
Next 13 years: Treated for things I didn't have
Symptom total: 45
1 faint Lyme IgM May 2000
5 More negative tests
IGeneX says YES! 3/16/09
Finally feel human: 2012

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bettyg
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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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Robin123
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It's binary...I last reported 1011 early this morning; now it's 1101. The 1 moved over...good job, every1!
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bettyg
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...1106; wow, the momentum keeps building!


robin, did they print my letter above; i think i copied it here .... would have been around 1000 ??
it's the one where i mentioned stedman and gale to her.


also, do you remember seeing my post in memory of KARL J..... stacey's husband who died last week; age 34? thanks!!

if they printed that, i may post the 2 - 47 yr. old lyme folks who committed suicide since they weren't getting the desparate help they needed PROMPTLY and ADEQUATELY.

thanks robin since you can view all and i can't! i just hate that.

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...1106; wow, the momentum keeps building!
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Robin123
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Betty, yes, I saw your Stedman/Gale post around the 1000 mark. Do you recall when you may have posted the one about Karl?
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robin,

my best guess on that would be checking stacey's post about karl's passing which had tracy's obit she copied on there.

i'm pretty sure when i posted about it i noted something there like the no. he would have been in since it WAS AFTER HOURS and wouldn't be counted until morning.

god bless you robin for your helpfulness to me AS USUAL!! you are so special my friend [group hug] [kiss]

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...now 1130 !!

robin, DON'T LOOK FOR KARL'S OBIT ON OPRAH!!
-------------------------------------------


i didn't realize you get messages there, and just found where they sent me 2 notes:

1..saying i violated by attaching a LINK...no no.

2. about violating SAFETY of people; i replied to it as i wanted to know exactly was done 2nd time submitting karl's obit WITH NO LINK FOR MEMORY BOOK nor their home address..

yes, it showed city/state .. anyway waiting for harpo1 to get back to me on that.


did any of you know you get messages there, and i didn't know you could send PRIVATE MESSAGES by clicking on posters name??

learn something new every day! [Smile]

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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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sometimesdilly
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sigh.....
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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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sometimesdilly
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sorry betty, can't follow your logic on this one little bit.

i don't pretend to know a thing about any of this, but nothing in what seems to be happening now suggests that a show on Lyme is forthcoming at all, much less one that would help make a positive difference in our favor.

sure hope i'm wrong. meanwhile, i'm still saving all the posts from there....

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Robin123
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It's not listed on Hot Topics now.

At least anyone can continue to read the 1173 posts here in this thread.

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Cheryl
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It's possible that the Lyme discussion is no longer listed as a "hot topic" because the pacing has slowed down quite a bit. While the total number of posts is more than other threads, the rate of postings declined a lot over the past day.

The other topic discussions might be "hotter" if they were more active in the past day or two.

--------------------
*Lyme Disease Information By Email

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bettyg
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dilly,

YES, please save all our posts on that thread!!

i still plan on promoting this thread until they make a decision..see below.


we'll never know why we aren't shown on home page in hot items.

but there was a big wig meeting that took place thursday in NYC with the powers to be IF oprah and dr. oz should do a lyme show ... UNDER OUR SKIN.

NO decision as yet. that's all i can tell all of you ok.


dilly, even i can't follow my logic most of the time! don't feel bad! lol uffda

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sometimesdilly
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hi Betty-

i have been saving all the messages at least once daily.

The last save was this AM, and I'll save again by day's end.

I've been saving it all as a Word doc- it is now over 650 pages, even though i've taken some stabs at editing out the profile graphic that appears in each post, etc.

Not sure how anyone could or should make use of it, but will have it indefinitely.

and betty. about that logic thing.

heh. i don't even remember the question now (or, was there one?), much less what logic you're referring to... oh well. [Smile]

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bettyg
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... 1189 now; almost 1200 and 300 more to go to my next goal!! yippee!


dilly; glad you're on top of saving it etc!! yes, so much garbage, and then there are posts like mine where it showed all the COMPUTER CODES vs. our text; many posts were like that!! pu...


glad to see you are saving twice daily!! yes midnight there is last any are posted daily.

EXCELLENT JOB AND THINKING ABOUT IT PRIOR ... my [bonk] is off to you! [group hug] [kiss]

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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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Robin123
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Someone called themself a Lymebassador, spreading the news -

May I suggest: representing Tickville, Lymeland, in these United States of Disarray?

[ 03-10-2009, 05:06 AM: Message edited by: Robin123 ]

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bettyg
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Replies: 1,215

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

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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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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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kris,

please update us...WHAT DAY WILL UNDER OUR SKIN BE FILMED WITH THE DRS. TV SHOW?

we need to know so we can keep sending our questions to the drs. tv show POSTS shown above on here, medical, and support. thanks!

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seeking
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I posted.

--------------------
Sick since childhood, a long time ago.

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bettyg
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kris, we have NOT heard a peep out of you in ages; are you hibernating for the winter's end. [Smile]
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sometimesdilly
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anyone with news about the Oprah thing?
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bettyg
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dilly, it's still ON HOLD; no definite news yet!!

either i or LOSTGURL will post here when a DEFINITE ANSWER IS GIVEN TO US!

looks like greta van susteren's lyme show will come FIRST over getting oprah to do it!!
****************************************

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Kali Dhi
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How could this still be on hold?

Is there anything I can do?

--------------------
http://www.definitivehigh.blogspot.com

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lostgurl
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All we know is 'they're still looking' but I know things are cooking. They are not holding carrots in front of us. Please don't get discouraged guys. Keep posting if you can. We need to get on all of our congressmen and get everyone on the same page as well.

http://www.mdjunction.com/forums/lyme-disease-support-forums/lyme-disease-activism/433637-free-helpfor-you-and-others

I know you guys have a thread regarding that one here, just threw ours up from MDJ.

Greta went sour. No comment. Not a happy camper

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