WE only have 46 people now who have posted for ALL of the U.S.
We need more. People need to know.
This is a copy and paste from Ellen's post of what Dr. Oz is asking:
At the end he asks for letters from us telling him if we had long term antibiotic treatment and were cured by it.
Well, he's still learning, so we need to educate him that even those of us who were not cured were helped by long term antibiotics. We need more research so we can have a cure.
[ 11. December 2008, 10:01 AM: Message edited by: kam ]
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I sent an email but I don't see it posted here....hmmmm, wonder if mine didn't get through or maybe some of us are posting somewhere else (I just used the link provided in a previous thread).
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kam
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posted
KS, There is a site to send an email to Dr. Oz.
We can't really know how many people have sent in emails.
But, at least we can see how many are responding on this site.
If I had known at the time, I would have copied and pasted my email to DR. Oz and posted it on this site too.
[ 04. December 2008, 08:43 AM: Message edited by: kam ]
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posted
I think it's been alittle confusing, because there was another link posted which I went to, but limited comments to like 160 characters, or something like that.
So of these other two links, which one is the best to post on? or should we just post on all of them?
Patti
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kam
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posted
It is confusing. I went back to the email I received and am copying and pasting here:
It is written by a person named Krista in TN
I am concerned that not enough people have commented on Oprah's Dr. Oz forum page. I just visited the site to make sure that the comment I wrote last night was approved by the monitor and posted - and their are only 34 comments!
I remember someone saying that Dr. Oz wanted to see how many emails or letters he would get about the topic after his radio show to base whether or not he would try to get Oprah to do an TV show on Lyme.
Maybe people are writing letters/emails directly to Dr. Oz and/or Oprah, but if the low number of comments on Oprah's "community forum" is any indication of the number of letters going directly to them, then we are in trouble...
I personally wrote a direct letter to Dr. Oz and then posted almost the same letter on the community forum page.
There are thousands of us chronic Lyme patients!
This is our biggest and best opportunity to get massive media attention, but I feel we have to convince them with numbers - that this is a huge problem that deserves their attention. As we all know, Oprah and her show is no stranger to personal tragedies, but I believe it is the number of our tragedies that will most influence their willingness to give us a forum.
I don't want to see this opportunity pass us by - as there probably won't be another train coming by like Oprah's for a long time...
Got this from Ocean's post. I am waiting for all the commercials to end so I can listen to Oprah's XM with Dr. Oz and Lyme
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tdtid
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posted
Good job keeping the links up for those of us in slow motion.
I did get to listen to the whole program a few days ago and hopefully if enough of us can start sharing our stories, Dr. Oz will start looking deeper into this.
It's obvious that the documentary intrigued him enough to do this radio show. Now if he could help us reach an audience that goes further than a radio station many don't have access to.
He's got the right connections with Oprah and we know she highly respects his medical expertise, so I say keep writing. Thanks for the links.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
I sent an email a little while ago. Any way to check that it went through?
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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kam
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posted
Just finished listening to it. Dr. Oz does request to contact him if you have lyme disease, how you are treating it, how you are doing...darn brain is going.
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kam
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posted
Jennifer...no way to check if it went through.
That is why I think it is good to post on the web site:
Dr. Oz is looking for numbers. I would think if he gets enough numbers he would get together with Oprah.
I would do both...send an email to Dr. Oz and copy and paste it and post it on the Oprah Web Site. IMHO
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lpkayak
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well mine isn't there either. it took forever to get it to go thru and now it isn't there. how did you get so many words??? it kept telling me less than 2000 characters...i cut it way back-and now its not ther
and that clariiiii or something is on more thant once and not about lyme
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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kam
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posted
so sorry yours didn't go through and how difficult it was for you to type.
if you think of it try again later.
that word count thing is tricky.
before lyme i use to be able to use a program that counted how many words I had typed.
after lyme, i dont' have a clue how i did that.
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kam
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posted
Hurray. Glad it went through.
WE NOW HAVE 46 as of Wed night.
[ 04. December 2008, 07:36 AM: Message edited by: kam ]
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kam
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posted
59 as of Thursday Morning.
If someone listens to the program again could they write down what exactly Dr. Oz is asking in response.
I think it had to do with treatment and what is working.
59 responses is still very low when lyme doctor's are seeing 1,000's.
So, moving this to the top again.
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kam
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It reminded me that it would be a good idea to include her book in our emails to Dr. Oz and Oprah's Community Forum
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kam
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posted
Copy and pasted this from Ellen's post on General
I need to go back and address this issue with an email to Dr. oz and copy and paste it on the Oprah forum
At the end he asks for letters from us telling him if we had long term antibiotic treatment and were cured by it.
Well, he's still learning, so we need to educate him that even those of us who were not cured were helped by long term antibiotics. We need more research so we can have a cure.
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Sent my story off today! Atheana Posts: 196 | From from a far | Registered: Jan 2008
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disturbedme
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posted
I agree - this is VERY confusing.... I also sent my story, but sent it through the different link (that limits it to 160 characters) and NOT with the message board.
Not sure if I need to write it on the board TOO but I'd say that just because the message board only has such and such a number, there are probably many more letters written, but not all at the message board.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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kam
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posted
Sent a second email to Dr. Oz. Forgot to copy and paste it to the message board.
Thanks for sending in your stories AThena and Disturbed me.
I like the HElen Keller quote.
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kam
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posted
Copy and paste from an email from Under Our Skin
We're delighted to tell you that UNDER OUR SKIN will be released on a limited basis in theaters across the country in March 2009.
Finally, the film and the Lyme disease issue will be brought before the general public and into public consciousness--a necessary step to create change.
But the success of the film will depend on high box-office numbers.
So we'll need you to flood the theaters during opening weekends--even if you've already seen the film.
This is the only way to ensure that the film will open in more and more markets and that Lyme disease will be seared in the consciousness and conscience of Americans.
At the end of January, we temporarily will be suspending DVD sales and community screenings, as we gear up for our nationwide, theatrical release of the updated film.
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mojo
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posted
I sent an email a few days ago and just posted to this link.
I hope more people respond. I have a feeling he got a lot of emails. I hope so!
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kam
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posted
Thanks Mojo.
I just recalled that I was told at one time when writing to put your title under your name. It brings more strength to the request or comment.
I was thinking if we all would do this, it would help us to become more real.
For ex:
I would sign it Katherine State of CA Educator (before coming down with lyme)
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posted
Here's a link to notes I took from his show while I was listening to it. If you scroll down to the bolded parts it talks about what he said when he was asking people to write in.
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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kam
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posted
Thanks Alison. Copied and pasted part of your notes here.
Also thanks for posting the URL to your notes.
Oz: asks for emails to be sent to Oprah.com about people with chronic lyme and if they cured it and how.
Oz says he is *very* interested in the NUMBER of e-mail responses he gets (HINT HINT PROPLE).
I just read the last entry from a person named Robin on the site. It was a powerful post.
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kam
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posted
I was not going to send the radio show and request to write in to one of my email friends who is now fine.
I thought it was not her fight anymore.
I was wrong.
She is just the kind of person that does need to tell her story.
So, if you are in contact with others who have regained their life...please contact them.
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DebAz
Unregistered
posted
I wrote in my story.. > If your counting ..
kam
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posted
At the close of Lyme Street on Thursday, Dec 4, 2008 we have 69 points.
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kam
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posted
Thanks Deb.
Bringing this to the top againt this am. I know that when I was really struggling it would take days before I would have what it takes to post and I would forget to post unless I saw another reminder.
Fri, Dec 5, 2008...Still only 69 posts.
Where are all the 1,000s of people with lyme disease.
I have heard of others who know of someone who had lyme disease and are well now. These are the people we need to post too.
HOping that Oprah will do a show on this and that it will result in the bill being passed to help with better testing, education of medical field and better treatment.
It also will put pressure on the person who has tabled the bill.
That is just one reason to get major media converage.
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kam
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posted
74 posts at the close of lyme street TGIF
I wonder how long they leave the thread open.
I think the first post was on Oct. 30th.
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kam
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posted
75 posts on Saturday Morning. Bringing this up for the weekend crowd.
Hopefully, Dr. Oz received more emails than this.
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In case you're counting....I sent in an email too, just didn't copy and paste to have it show on the other link....but...I sent one in! TS
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kam
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posted
TS Hopefully, they received much more emails than posts.
POsts this Saturday evening are only 76.
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lpkayak
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posted
mine still isn't on there-where do you type? why is that old post from claireeeee there? why is nhlyme's post so wierd???? i want to help but they don't make it easy-6 people in my family are dx and in treatment
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I sent him an e-mail, but didn't post to the thread. I also sent a copy of Cure Unknown to his Columbia address, now we need to convince him to read it - I think that would go quite a ways in convincing him to delve into this further. -karen
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kam
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posted
Yes. That is a great idea CS. I hope he gets it adn reads it.
Sunday am 80 posts. I am beginning to think that lymenet just is the tip of the ice berg.
I keep wondering where all these 1,000's of patients that lyme doctor's have go to for support.
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kam
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posted
Bringing this to the top again. Only 81 posts now.
The last post I tried to read brought tears to my eyes.
Don't mean to be a pest about this. But, I do know in the past, it would take several times of reading a post before I was able to respond due to health.
So, want to keep this in the lyme light
Copy and pasted this from general
To me the first rule of Lyme activism has always been, "when you're drowning and God sends you a rowboat GET INTO IT."
The trick is to recognize the rowboats..
Dr. Oz's interest in us is a whole ocean liner.
Please write. Ellen
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kam
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At the end he asks for letters from us telling him if we had long term antibiotic treatment and were cured by it.
Well, he's still learning, so we need to educate him that even those of us who were not cured were helped by long term antibiotics. We need more research so we can have a cure.
This is a huge opportunity for us. With Dr. Oz's popularity, winning him over could be the tipping point for us. Please, please write to him so he gets an idea of how many chronic Lyme patients there are. https://www.oprah.com/plugform.jsp?plugId=495&referer=
Thanks, Ellen
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kam
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posted
Copy and pasted this from Activism. Sorry forgot who the poster was.
We have just heard that we are on Oprah's radar.... that is a big deal. But so far, there has not been an impressive enough response to Dr. Oz's show.
We need much more. Get your friends, family, co-workers, doctors, nurses, anyone and everyone you know to write Dr. Oz.
There are Lyme groups around the world -- everyone needs to be passing this info along and getting everyone to email in.
Can everyone post it everywhere.... at their doctors offices, email friends and people who know what you are going through to contact Oz. Getting on Oprah would be a very huge deal.
We're delighted to tell you that UNDER OUR SKIN will be released on a limited basis in theaters across the country in March 2009.
Finally, the film and the Lyme disease issue will be brought before the general public and into public consciousness--a necessary step to create change.
But the success of the film will depend on high box-office numbers.
So we'll need you to flood the theaters during opening weekends--even if you've already seen the film. This is the only way to ensure that the film will open in more and more markets and that Lyme disease will be seared in the consciousness and conscience of Americans.
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lpkayak
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posted
well-i tried again. must have been the 4th time. it's still not there.
someone should tell him there are others who want to post but can't either because of a site problem or because of our lyme brains
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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kam
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posted
That would explain why the numbers are so low.
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kam
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posted
84 posts at the end of today, Monday, Dec. 8th.
I know we could fill the audience with lyme patients.
I also had to try several times today to post.
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posted
OK. I sent mine. Hope it helps, cause I sure hate reliving this nightmare.
Jan
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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posted
Exactly, Janis. It is difficult to give MORE time to this disease than it has already stolen from all of us. But I just keep thinking of those who are now where I was three years ago. It is so hard to go back, but we all have to do it if this is going to get fixed.
I, too, posted at length on the Oprah.com site vs. Dr. Oz radio show site. It gave me the ability to (partially) tell my story.
This is definitely a great chance for us and the Lyme victims to come.
otm (Cheryl)
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kam
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posted
gforce posted this under activism...
Dr. OZ is very intrigued with 'Under Our Skin'. It was on his radio show.
Please take a moment to write a comment to Dr. OZ.
There have only been 30 responses. We need 100's to get it on Oprah!!!!!!!
kam
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posted
I also had the thought it would be good to post some of the video's we have.
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kam
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posted
Copy and paste from an email I received
Lyme community! Help us by sharing your story! Contact Dr. Oz to get Lyme disease featured on the Oprah Show
For Immediate Release
On November 26, 2008, Dr. Oz, part of the Oprah and Friends Network, asked for people to email him to learn how extensive Lyme disease is in the US. Everyone is encouraged to pass this on through email lists so everyone can contact Dr. Oz. Click here to email your Lyme story to Dr. Oz.
You can listen to Dr. Oz's Lyme disease broadcast here. The show features Andy Abrahams Wilson, Producer/Director of Under Our Skin and Turn the Corner's 2008 recipient of the Vision of Hope Award. It also features Kathy Fowler, a 2008 Courage Award recipient.
During the broadcast, Dr. Oz also asks Lyme patients in the audience to share their own stories. With enough of a response from the Lyme community, we hope to pique the interest of The Oprah Show, where Dr. Oz is a regular guest contributor. So be sure to tune in and write in! And remember to thank Dr. Oz for his interest in Under Our Skin and Lyme disease.
Take Action!
C Email your Lyme story to Dr. Oz
Share your comments on Oprah's Community Forum
Click here to listen to Dr. Oz's Lyme disease show
Donate to Turn the Corner
Visit the Turn the Corner website
_________________________________________ www.turnthecorner.orgPosts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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groovy2
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posted
I wrote mine and sent it--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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stymielymie
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posted
moi aussi madame kam
docdave
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kam
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posted
Doc Dave and Jay. Glad you were able to post too.
Having trouble with server so now that I am here...
95 posts on this Tuesday, Dec 9, 2008
Wouldn't it be great if we could all meet each other while being part of Oprah's audience!!
A get together some time would be good too while we are there...health holding that is.
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kam
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posted
Copy and pasted from Oprah's web site.
Mandy's mom in the film UOS
December 8, 2008
Dear Dr. Oz:
I am the mother of Mandy Hughes, who is featured in the documentary "Under Our Skin" and frequently the spokesperson at events and screenings related to the documentary.
As a parent, I had/have all the hopes that my vibrant, healthy and intelligent child would grow up and thrive. Going from a dream of working in the profession of her choice, to within a few short years, wheelchair bound and in extreme pain, which you have seen in the documentary, cripples an entire family.
What is not seen are the personal struggles/tolls taken on families both emotionally and financially seeking out treatments that the Healthcare community refuses to acknowledge in hopes that this will all "just go away". The fact is that it will not go away and neither can we.
We also have to protect the physicians who are willing to treat the infected patients. Allowing them to be "sacrificed" will cost additional lives.
To whatever extent your wider audience can benefit from learning about this insidious disease could possibly be the "push" we need to finally get our arms around this new horrific epidemic.
I know that Andy Abrahams Wilson, Mandy Hughes and a number of other highly qualified professionals would be truly grateful for the opportunity to be interviewed and heard by you.
PLEASE consider our request. As Mandy said: LYME - "Listen You Must Educate."
Thank you.
Linda Brace
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kam
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posted
97 posts this am.
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posted
Is there anyway we can attach the petetition that some 6000 people signed a while back?????? That sure would show him how many people are effected by this awful disease!!!! Just a thought!!!!!
onmyway
Posts: 131 | From Georgia | Registered: Oct 2008
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posted
Is it necessary to post it on the message board?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 94843 | From Texas | Registered: Feb 2001
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kam
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posted
I don't know TuTu. But, I would think it would be a good idea.
I assume Dr. Oz's staff is reading his emails.
And Oprah's staff is reading the posts.
As far as posting the petition, it is worth a try.
I have tried posting the email I have gotten lately from Pam W's book but it was not accepted.
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kam
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posted
99 posts at the closing of Wed, Dec 10th.
this still does not even cover one state
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kam
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In case you are missing it...I have copy and pasted and put in more spaces for the emails that have been coming this week for Pam's book.
Check it out. Tres bien
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kam
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posted
We broke a 100. There are 101 posts on this morning of Friday, Dec 11th.
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posted
I just left a message with my LLMD explaining the Dr. Oz broadcast and what he has asked for in e-mails. I asked if he might be willing to post this info. in his office. Just think how many more responses will be sent if many of us make this request. It doesn't hurt to ask!
-------------------- Lyme diag. 2005, confirmed with LLMD Dec. 2007, 2 years of Marshall Protocol, Bicillin,mal.Dr.Z herbs, EBV, HHV-6,Babs,Bart?(3 kids positive for Lyme) Posts: 10 | From NY | Registered: May 2008
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kam
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posted
Excellent idea!!
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posted
I go the link but do not know how to add my comments. I do not see how you can add your comment.
Please someone help.
Thank you Lyme4
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kam
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posted
Try clicking on the link.
Then clicking on reply.
A page will come up asking you to join.
Click on join.
Fill out the info
Then, I think it takes you back to the place for comments.
You might need to do this when your brain is working better.
It can be tricky for a lyme brain.
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kam
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posted
107. Re: Doctor Oz discusses Lyme disease and the OK WE now know someone from Oprah's staff is reading the messages...or at least the latest one.
movie Under Our Skin Dec 11, 2008 12:25 PM | In response to: danaz8 Hi danaz8!
Welcome to Oprah.com. We're glad you found us! There are many wonderful and supportive members here at Oprah.com. Please know that we hope good things for you.
~Harpoboard1, Oprah.com Community Moderator
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Ive sent in my story to Dr. Oz and have tried getting family and friends to send their stories and struggles. I have also posted this on several lyme related websites...I hope this helps!
-------------------- -Love and Gratitude Posts: 69 | From another planet far far away | Registered: Oct 2008
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i did send the petition that was signed by over 6200 people to him!! We will see!!!!!!
Posts: 131 | From Georgia | Registered: Oct 2008
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Thanks for your help. I was able to finally post a comment.
Your so right with brain issue, its like we are friends and can help each other out.
Lyme4
Posts: 60 | From RI | Registered: Dec 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
This is good lovingattitude
Lyme4..I think I read your post. I also think it is the first post I have read about the whole family being infected.
But, I know you are not alone with this. I know there are many others
Glad you were able to get the petition to Dr. OZ (Going back now to catch your pen name. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Only 110 now as of the closing of lyme street on Thursday, Dec 11th
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Doc Dave and Jay. Glad you were able to post too.
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