posted
My LLMD forwarded the following message to me last week. Very exciting news. I'm so glad Lymenet is back up!!!
Fancy.
Dear Friends,
First of all, thank you so much for all the help you've given me through your experience, support, TLC--and not least of all, through the example of your courage in facing your own challenges with Lyme disease. I can't tell you how much it's meant to me.
I'm sending you this email because you or someone close to you has chronic Lyme. It includes a link to a short form--basically, to find out how many are out there who wrestle with the disease or who have had to take more than the three-week standard dosage of doxycycline to recuperate. Perhaps you've already seen it and filled it out. If not, please do--it will only take a couple of minutes, and it will be a great help to others. It's to bring Lyme into the public eye so we can all get a deeper understanding of the disease and what people are going through, as well as get more momentum behind Lyme research.
If enough people respond, Dr. Oz will do a nationally televised show and an investigation into the politics of the number-one infectious disease in this country. I'm sure you will agree it's high time the public had more knowledge and understanding of this tenacious bug and the devastating effect it's having on so many people's lives.
So please fill out the form and/or send this email on to others who might have chronic Lyme. Be brief, but in the "Your Message" section, include information such as coinfections you've had, medicines you've taken, how long you've been battling Lyme, and anything else you feel is important. This is a chance to make our voice heard and make a difference.
posted
Thank you Fancy and Brandt! I filled it out.Good Luck!
Posts: 261 | From Piedmont | Registered: May 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey fancy-
Can you tell me who is this *** person writing the email? Who does he work for, etc?
Do note- the terms and conditions on the form they want you to fill out state your information will NOT be kept confidential and it will be shared.
I am copying the fine print here below (I can't see it) and I highly recommend everyone read it before sharing your personal medical information and consider the ramifications of your participation.
Unlike Mr. Morgan, I don't feel it is necessary to list the actual medicines you take, along with your name, phone number and address.
Also consider this...
They say they MIGHT do a program. Most people go to the supposed "leaders" in the field for their information. The CDC, IDSA, etc. If those dopes can convince Congress there is no such thing as chronic Lyme disease, what chance do you have going up against them?
If they do a program... there is NO promise that it will be done from our point of view.
They could go IDSA all the way.
It could back fire and blow up in our faces and hurt our children, our LLMD's and ourselves.
If you want to do this ... my suggestion is to proceed with caution and know that your insurance companies, employers, our LLMD's and your families welfare could be compromised. All of us could lose if this takes a turn for the worst.
I do not want to argue this with anyone... nor be considered a "nay-sayer". I point this out for new folks because I care.
I've seen too many bad things happen with deals like this... and that is the ONLY reason I am sharing this warning.
And please.... NEVER, NEVER, NEVER share the name or contact information of your LLMD with anyone. EVEN if they say it is ok.
If they do say ok... chances are they haven't been attacked by the medical boards or insurance companies ... yet. Please don't risk it.. even if they have a website, everyone knows them, blah blah blah.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Read their policy.... quotes below.
"Stories, ideas, suggestions, essays, audio, video, photographs or related materials and any other materials of any kind whatsoever submitted (hereinafter, the "Submissions") will not be returned or kept confidential.
All such Submissions may be used: (i) on www.oprah.com (the "Website"); (ii) for broadcast or other publication by Harpo, Inc.
*** or any of its affiliated companies or entities*** ,
including, but not limited to, The Oprah Winfrey Show, Harpo Productions, Inc. and Oprah & Friends, Inc. (collectively "Harpo") or its related companies or entities, including
*** without limitation*** , The Oprah Winfrey Show, "The Oprah Winfrey Network" and distributed in
*** all markets and media worldwide and in perpetuity.***
By submitting the above, you acknowledge and agree to the following terms and conditions and
***consent to your name and geographic location possibly being published in connection with the publication, distribution and/or broadcast of your Submission(s).****
1. The Submissions may be shared with The Producers and/or developers of Oprah & Friends and/or other Oprah & Friends (or its related entities, including, *** without limitation ***, Oprah.com and OWN) related programming.
2. Neither Harpo nor any of its affiliated companies or entities are obligated to use or pay you for any Submission.
3. It is possible that similar Submissions may be submitted to Harpo by multiple sources and that a Submission may be similar to ideas generated or developed independently by Harpo employees.
4. All Submissions shall become the property of Harpo, *** may be edited for length, clarity and/or functionality,***
*** will not be subject to any obligation of confidentiality, ***
may be shared with and used by the staff of Harpo and any of their affiliated companies or entities and
*** shared with legal authorities if Harpo believes it warranted. ***
Neither Harpo nor any third or other party with whom Harpo shares the Submissions shall be liable for any use or disclosure of any information or Submission that you submit.
5. Harpo shall exclusively own all known or later existing rights to the Submissions worldwide and
***shall be entitled to the unrestricted use of the Submissions for any purpose*** in all media now known or hereafter discovered without compensation to the provider of such Submissions.
6. Harpo reserves the right to *** change due dates for Submissions, or other specifics, as it deems necessary in its sole and exclusive discretion.***
7. By providing the Submissions, you represent and warrant that you are at least twenty-one (21) years old.
8. No Submission may contain any material that is abusive, vulgar, threatening, harassing, libelous, defamatory, obscene, *** invades a person's privacy,*** violates any law, any intellectual property or other property or other rights, or is known to be false.
For more information about Oprah.com's privacy policy click here."
...
"BY CLICKING "SUBMIT" BELOW, YOU HEREBY AGREE TO ALL OF THE ABOVE TERMS AND CONDITIONS."
posted
If this is the name of a lyme doctor, it needs to be edited out of your message. Or maybe it is a patient? Can't really tell from your post Maybe this patient does not want his/her name on a pubic forum?
Thanks for the info, though.
Asking for an accurate count and getting it from responses to a dr. affiliated with a tv talk show host, is probably not the best approach. If they are serious about this, it would be better to contact the Lyme Disease Association. That way no one would be providing medical information. They would have a better number than they would get from tallying individual responses. A lot of lymies are not going to be replying because they won't know about it.
Then when they get a better number than CDC reported cases (multiply by at least 10, or maybe more), they could use individual stories from people who wanted to be involved.
Posts: 8430 | From Not available | Registered: Oct 2000
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I recieved the message from my LLMD. I don't who he is. I apologize. I should have found out before I posted the letter. I wasn't thinking. I'll e-mail my LLMD and find out who he is.
Meanwhile Tincup, could you remove his name from your post. Thanks.
Thanks for pointing that out Lou.
My LLMD's name was not on the original post so no need to worry about that.
Fancy
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
10-4 Fancy... done.
I didn't recognize him (the name) as a LLMD.. but it still begs the question, who is asking for this info.
posted
Thanks Tincup, I didn't catch all that so I appreciate you bringing it to attention on the thread. I miss things like that alot. It's too bad that we need to be so careful.
I didn't go into alot of detail with my submission. Now you got me thinking what did I write. LOL
Fancy
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
WOW!
We posted in the same 60 seconds, so I just so your second reply.
We are a super fast duo here, aren't we?
HA! That just brought a picture in my head...
Saturday Night Live- can you see us both doing the Steve Martin "wild and crazy guy" walk across the screen?
Gottta be good at sumtin round here. HA!
Now I forgot what I was going to say! Darn it all.
Oh.. I am sorry if I sound too over protective.. but it is sincerely and ONLY because I do care about all our members.
It is not at all to try to lessen the excitement.. as this IS exciting...
posted
Wow, that was fast. Guess I'm a little late on this one.
I miss that bit with Mr. Martian It was great!!
Good to know I'm not the only one around here forgett'n things.
No problem. Glad you chimed in.....
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i suppose it could just be me and my fogginess but i cannot seem to get that form filled out and my story to her
i have tried soooooooo many times.
i can't help but think maybe others are having trouble and that is why the numbers are so low.
it is not lyme friendly.
and it hurts so much to type i just can't keep trying-but i wish someone would tell oprah about the trouble i am having
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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adamm
Unregistered
posted
Realistic Lyme Count--come on! Let's show them studies rather than anecdotes. Show her the research linking fibro, cfs, and basically all common neurodegenerative disorders to Lyme, and you already have reason to suspect it's at least in the tens of millions.
Lymeneteurope has an archive of hundreds of studies attesting to the chronicity of the bug that might be worthwhile submissions as well (not that I trust the mainstream media to do us justice any time this decade, though.)
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posted
yeah...I had to hop back out - too much information to reveal about myself - and for what? I just can't become part of a "list" that can be shared - with anyone. I think people should be careful - given today's climate concerning our illness - to not give so much away as to be BRANDED. Be cautious. -p
Posts: 641 | From So. CA | Registered: May 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey kayak..
If you email me your story I will be sure it is submitted for you. I don't mind trying.
Adam said... "Lymeneteurope has an archive of hundreds of studies"
May I suggest?
If you want this project to be taken seriously and chances remain hopeful she will do something for the benefit of all...
Maybe use PubMed ... a free govt library/medical site with over 18 million scientific abstacts, citations and articles... as a reference to send them... rather than LNE.
It has a very easy way to search for anything you need and very quickly you have answers... and... the added benefit of having no hullaballou to stumble on in the process that would discredit patients or their labs and doctors.
My LLMD e-mailed me back and asked that I leave out his name. Thanks again Tincup from keeping me from making a potentially hurtful mistake. Especially after the year I've been through you think I'd thought about it. Dah!
Dr. Oz's show on the radio was very good for awareness and fair. I would think Oprah's would be too. Only in a deeper sense.
I know that it could go either way depending on their opinion of it all. If the Oprah Show credits the celebrities who have been open about suffering from the disease such as The Author who wrote the book DIVINE SECRETS OF THE YA-YA SISTERHOOD, Rebecca Wells. Her website implies that Ms. Wells still has the disease. Under fund raising on her site.
Plus the other celebrities that we talk about. I would think Ms. Wells must have been on Oprah one time or another but I don't know how Oprah credits her.
I haven't watched much Oprah.
Does anybody watch her? Do you know her show of ever been on the negative side of people who are suffering?
I do agree that it is important to be careful at the same time if Dr. Oz and Oprah put on a show that showed the truth it would benefit so many people who don't yet know what they have and just might be positive for us.
If we can achieve that in caution that would be great.
I just wanted to add, It's up to every individual just something to think about.
Fancy
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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posted
I e-mailed Dr. Oz's show again. I wrote the title and reveiws of "Cure Unknown" Lyme epidemic by Pamela W.
I think it's perfect for a man of science. Half my family who is in medical read it with in a couple weeks.
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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