Wow...good find. It's new, so hope it lasts there for a little while. Has it hit the tv news as well or just their web site?
Cathy
Posted by docjen (Member # 7510) on :
It looks from the story that they are going to run a 2 part piece tomorrow morning (Monday 7/7) sometime, but it doesn't say when.
Posted by docjen (Member # 7510) on :
If anyone has any idea when this story is going to run tomorrow morning...please post! I haven't been watching the news today so I don't know if they have been running promos for it.
But it's still up as the top story of the day!!!
Posted by mtree (Member # 14305) on :
I'm just going to set my record button...6am tomorrow couldn't find out if it will be on tomorrow or not.....
anyone finds out let us know....
mtree
Posted by cantgiveupyet (Member # 8165) on :
excellent.
She looks so much better now then she did in the movie, her speach is better, you can just feel how alive she is.
gives me hope.
Anyone know how long she treated and what coinfections she had?
Posted by AnneRoto (Member # 13363) on :
The segment on Lyme Disease is scheduled to air between 8:45 and 9am, EST on Monday, July 7 on CNN's American Morning Show.
Posted by not so sublime lyme (Member # 15185) on :
I saw "Under Our Skin" when it was showing in the D.C. area. I was lucky enough to go the night that they had a panel discussion afterwards.
Both Mandy and the director/producer were part of the panel. Mandy looked and sounded absolutely great in person. She appeared to be completely healthy.
She told us a part of her story that wasn't in the movie---she was diagnosed with lyme after being bitten by a tick while she was a child living in Maryland. I am not sure which, if any, co-infections she may also have been dealing with.
Unfortunately, she wasn't treated with the right amount or duration of antibiotics--and anyone who has seen the movie knows what a terrible toll that mistake took on her body.
But I'm happy to report that she looked wonderful and she has a beautiful spirit to match.
I hope everyone and their families gets a chance to see this movie at some point. It is just so, so good.
Posted by bettyg (Member # 6147) on :
thank you all; i just programmed my vcr for the cnn feature!! Posted by bettyg (Member # 6147) on :
CNN morning tommrw LYME attaking IDSA
jamescase20 Frequent Contributor Member # 14124 posted 07-07-2008 12:56 AM --------------------------------------------------------------------------------
-------------------- 32yrlyme/bart6yrbab.On: MMS,Ceftin, rulide, bactrim DS,(pulse doxy or flagyl) paxil as an efflux pump inhibitor, coconut oil, virgin.
-------------------------------------------------------------------------------- Posts: 783 | From: Aurora IL | Registered: Dec 2007 | IP: Logged
bettyg Frequent Contributor Member # 6147
posted 07-07-2008 02:23 AM --------------------------------------------------------------------------------
copying entire text here....breaking it up as needed!
10-year battle with pain highlights Lyme disease debate
Story Highlights *****************
Mandy Hughes says she suffered from Lyme disease effects for more than 10 years
Hughes featured in documentary that questions disease treatment guidelines
There's a debate over whether the disease symptoms are mistaken for the disease
By Ronni Berke CNN
NEW YORK -- For more than 10 years, Mandy Hughes drifted in an out of what she calls the horrible, debilitating pain of Lyme disease.
Mandy Hughes says the pain she suffered for more than 10 years was due to Lyme disease
"It literally feels like you got into a severe accident, like you were hit by a Mack truck and you were allowed no medical attention," she says.
After being bitten by a tick at 19, Hughes broke out in hives and suffered fever and chills so severe that she had to be hospitalized.
She was diagnosed with Lyme disease and was sent home with two weeks' worth of the antibiotic tetracycline. She seemed to be cured.
But over the years, the Lyme symptoms flared back -- crippling joint pain, muscle spasms, headaches and facial paralysis.
She visited 15 doctors, yet they were unable to arrive at a diagnosis. Several thought she had multiple sclerosis. Others knew she was sick but didn't know why. Lyme had been ruled out.
"Maybe it's psychological -- we don't really have an explanation," they told Hughes. "Your tests are coming back fine, Mandy."
Watch a report on a 10-year battle with Lyme disease symptoms �
The memory of one doctor's visit stays with her to this day. She went to see him with joint pain so severe, she said, her hands were curled into a palsy-like position. Yet the doctor seemed impatient with her.
"You're obviously an attractive woman, and you're just trying to get attention," she recalls him saying.
Lyme disease debate ******************
See how one woman's case and a new documentary are spurring debate over treament of Lyme disease Monday, 6 a.m. ET
In 2005, Hughes went to see what some patients refer to as a "Lyme-literate" doctor -- one willing to diagnose chronic Lyme disease and prescribe a long-term regimen of intravenous as well as oral antibiotics.
Within three months, she began to feel better.
After 15 months, she was back on her feet, but had to abruptly halt treatment when her doctor was sued by an insurance company and stopped seeing patients.
Learn more about Lyme disease �
Hughes' story is featured in a new documentary called "Under Our Skin," which takes a look at the leaders of the Infectious Diseases Society of America, a national medical group that represents health care professionals who specialize in infectious diseases.
The society's purpose, according to its Web site, is to improve health care in areas related to such diseases.
In particular, the documentary takes aim at the 14-member panel that wrote the 2006 Lyme disease treatment guidelines.
The guidelines question the existence of chronic Lyme disease and claim the post-treatment symptoms of some patients appear to be "more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection."
The guidelines list specific criteria for diagnosing Lyme -- such as an obvious tick bite, a characteristic bull's-eye rash at the site of the bite, facial paralysis and a positive blood test.
Don't Miss *************
Investigation into Lyme disease guidelines IDSA on Lyme disease investigation
Yet some Lyme specialists say many patients experiencing symptoms do not see or remember a tick bite.
Only 70 to 80 percent get the rash at all, according to the Centers for Disease Control and Prevention. **********************************
The longer the disease goes undiagnosed, the harder it is to treat, some doctors say.
"The disability associated with Lyme disease is worse than the disability that you might see with someone after a heart attack," said Brian Fallon, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center in New York.
Patient advocates criticize the IDSA for recommending no more than a month's worth of antibiotics to treat Lyme.
They say insurance companies use the guidelines to deny payment for long-term antibiotic therapy.
But the IDSA says there are inherent risks from such treatment, including localized infection from the IV line and the creation of antibiotic-resistant bacteria.
One IDSA critic, Connecticut Attorney General Richard Blumenthal, conducted an antitrust investigation of the guideline process, saying the panel ignored or minimized other medical opinions regarding chronic Lyme disease.
Blumenthal said the process was tainted by conflict of interest because members of the panel consulted for insurance companies and at least one had a patent for a Lyme disease treatment.
Health Library MayoClinic.com: Lyme disease
Gary Wormser, chief of infectious diseases at New York Medical College and one of the guidelines' authors, denies those allegations, calling them "preposterous." ***************************
"What we did recommend was not treating with unsafe or prolonged courses of antibiotic therapy," Wormser said.
In a settlement with Blumenthal, the IDSA agreed to reassess its 2006 guidelines with the assistance of an outside arbiter.
The heart of the debate is whether patients actually have Lyme disease, or simply symptoms that are mistaken for Lyme disease.
"The problem is that the majority of patients that carry the diagnosis of chronic Lyme disease actually have the same kinds of symptoms:
fatigue, musculoskeletal pain, sometimes brain fog. ... The majority of such patients actually don't have any evidence of ever having had Lyme disease." Wormser said. ***********************************
There's a lot at stake. The CDC reports approximately 20,000 new cases of Lyme disease a year, with the number doubling from 1991 to 2005. Factoring in underreported cases, the CDC says the actual number could be three to 10 times higher.
"We have an epidemic of Lyme disease," said Daniel Cameron, president of the International Lyme and Associated Diseases Society, which rejects the IDSA guidelines and says the chronic form of the disease may be prevalent in up to 62 percent of the population in areas where Lyme disease is endemic.
Fallon says standard blood tests fail to detect the Lyme infection in 20 to 30 percent of patients.
"Most reasonable academic physicians throughout the United States would acknowledge that there's a large number of patients out there who do have chronic, persistent symptoms. The question is, why do they have those symptoms?" he says.
All About Lyme Disease
Lyme wars 1:01 Source: CNN | Added July 1, 2008
****************************************
good interview except for the worm's comments ... they will never change!
Posted by Clarissa (Member # 4715) on :
Anne wrote:
"The segment on Lyme Disease is scheduled to air between 8:45 and 9am, EST on Monday, July 7 on CNN's American Morning Show".
PHEW! I thought I missed it because they advertised it about 7:45am before a commercial!
Exciting news: For the first time EVER, my friend sent ME the CNN article on Mandy and Lyme.
Trust me, THAT's evolution
This is all so exciting!! Posted by Clarissa (Member # 4715) on :
Just saw it!
I thought it was excellent. Waaaaay better than the Good Morning America clip.
Thoughts?
Posted by jamescase20 (Member # 14124) on :
Short but sweet, finally truth.
Posted by sixgoofykids (Member # 11141) on :
Did you see in on CNN or did you see the short clip?
I've been watching the live stream of CNN on the computer and it wasn't on.
Posted by sfcharm (Member # 9392) on :
Short but Excellent information given.
Barb
Posted by Clarissa (Member # 4715) on :
I saw it on CNN at 8:45ish on the TV.
James is right; short, accurate, true.
LOVE that Mandy! You go, girl!
Posted by sixgoofykids (Member # 11141) on :
Hmm, what they show on CNN.com must be a different "live-video" from what they show on TV. I don't get CNN. Posted by cactus (Member # 7347) on :
Good clip.
I have to ask, though - did anyone else notice this:
The headline before the commercials prior to the clip read "LIME Disease Debate"! Posted by Clarissa (Member # 4715) on :
YES, YES, my Mother noticed. I didn't write about it because I thought maybe she didn't have her glasses on.
That's horrifying but thankfully they corrected it when the clip was shown. phew!
Posted by Clarissa (Member # 4715) on :
cbb Frequent Contributor Member # 788
posted 06 July, 2008 11:43 PM -------------------------------------------------------------------------------- Please do this now:
Go to www.cnn.com Click on Health You'll see "10 Yr Battle highlights LD Debate"
Under the story- click "Disease's Cause, symptoms, treatment"
Then- On left, under "Don't Miss" click "IDSA on LD"
This is the IDSA response to Investigation of their Guidelines. Read their response (hope you have a strong stomach) and then RATE the letter and write your reasons for your rating.
A few minutes ago, most of ratings were the lowest on the scale. I hope it stays that way!!
Edited to add change: Story has been moved to 2nd column - under Latest News
[ 07. July 2008, 11:43 AM: Message edited by: Clarissa ]
Posted by Larkspur (Member # 5131) on :
Just saw it - awesome!
They mentioned the IDSA trtmnt guidelines at the end for 2 sec as like an "afterthought"
the rest of the story was about Mandy and how she got well, how the tests are inaccurate and the word "epidemic" was used! Plus face time for Dr F from Columbia and an ILADs doc! No face time for any IDSA peeps
Also they said - this is the most emailed story on CNN.com - go for more info
and they mentioned Under Our Skin
I'm really pleased, personally
Posted by docjen (Member # 7510) on :
Anyone know who we can email at CNN to thank them for doing this story? I couldn't get the link to the blog to work, and there doesn't seem to be any other links attached to the story?
Posted by Clarissa (Member # 4715) on :
cbb Frequent Contributor Member # 788
posted 06 July, 2008 11:43 PM -------------------------------------------------------------------------------- Please do this now:
Go to www.cnn.com Click on HEALTH section You'll see "10 Yr Battle - LD Debate"
Under the story- click "Disease's Cause, symptoms, treatment"
Then- On left, under "Don't Miss" click "IDSA on LD"
This is the IDSA response to Investigation of their Guidelines. Read their response (hope you have a strong stomach) and then RATE the letter and write your reasons for your rating.
A few minutes ago, most of ratings were the lowest on the scale. I hope it stays that way!!
Edited to add change: Story has been moved to 2nd column - under Latest News
Posted by cactus (Member # 7347) on :
Thanks for those links, Clarissa. (And I'm glad I wasn't the only one seeing "Lime" - thought it might just be me!)
I'm still looking for a link to send a thank you to CNN for doing the story...
Is there a place to send our feedback to CNN? (Am I blind??)
Posted by Cobweb (Member # 10053) on :
I saw it -and taped it. Finally a report that was short sweet and can't be beat.
Mandy is such an eloquent spokesperson for Lyme Disease.
The IDSA was just sort of tacked on as a curtesy at the end-although it made them look like fools.
After the detailed and disturbing and convincing struggle that Mandy has been through for such a LONG time, and then IDSA says short treatment is all that's necessary.
I loved it!!!!!!
Posted by disturbedme (Member # 12346) on :
quote:Originally posted by cantgiveupyet:
Anyone know how long she [Mandy] treated and what coinfections she had? [/QB]
She was at the "Under Our Skin" viewing I went to and she spoke. She is still in treatment, but she's doing much better, as all can see by just looking at her. I am not sure what co-infections she had though.
Posted by northstar (Member # 7911) on :
So they quoted IDSA (like it is a person?) as saying abx USUALLY help MOST of the people MOST of the time.
Now if that aint a qualification. According to their guidelines, their recommendation is 100% DEFINITIVE.
Anything more and it is not lyme.
How many times have we seen that in their interviews and communications.
What a bunch of forked tongued & split mouthed liars.
So when there are Med Board Actions and insurance lawsuits and insurance denials,
The USUALLY and SOME are forgotten,
And their guidelines cover "all the time for all people all over this country and all over this world, and all doctors' treatments" 100% truthful and accurate.
They are a farce.
Thank you Open Eye Pictures, Mandy, and CNN.
A picture is worth a thousand words. She is living proof of the need for long term antibiotics, without fear of medical board and insurance company reprisals.
Northstar
Posted by NanaDubo (Member # 14794) on :
I have scoured the page and don't find anywhere how to respond to the article or email CNN.
I think it's so important that they hear from all of us - but I'm sure there are many out there like me that just can't figure out how to do it.
Any detailed instructions would help me out a lot.
Posted by Allie (Member # 10778) on :
Here's proof that there are some very wonderful human beings in this world!
I haven't seen the segment, but the descriptions here are heartwarming!
When this disease is finally taken seriously by the powers that be, they'll figure out the BEST treatment!!!!! We'll get better! And others won't suffer like us!
We deserve this and more!
Thank you Mandy, Open Eye Pictures, CNN and of course our LLMDs.
Allie
Posted by ticked-offinNc (Member # 15420) on :
If you would like to respond to the CNN article
I went to Cnn.com
At the bottom of the page there is a contact us bar
Click on it, the next page asks you to click on area of interest
I just clicked on HEALTH, and it will take to to an e-mail your comments page.
Good Luck, thank you for the idea to let them know how well they did.
Posted by NanaDubo (Member # 14794) on :
Thanks for the help ticked-offinNc.
I also took Jamescase20's advice and emailed Lou Dobbs. He is quite outspoken and not afraid to tackle controversial issues.
If we could get him interested in this it would be great.
Posted by lou (Member # 81) on :
CNN will also know it was considered a good story by the number of times it was emailed. So, that is another way you can register your approval.
Posted by Nutmeg (Member # 7250) on :
Disappointed that it didn't seem to be on here (west coast). I watched from about 7:50 until about 8:00, then from 8:35 until 9:00, plus popped in a few times in between to check.
I ordered the Under Our Skin DVD, and I did see the clip on Good Morning America last week. Sounds like the CNN one was much better.
Nutmeg
Posted by tdtid (Member # 10276) on :
Clarissa,
I wrote to that link you gave. It goes to Larry King Live. I got an email thanking me to for responding to the Larry King Live show.
Guess I'll try again with the CNN page directly.
Cathy
Posted by Clarissa (Member # 4715) on :
Bummer! Sorry about that.
I'll delete that post so people don't waste their time.
Thanks for letting me know...I stepped out so haven't checked my personal email yet.
Posted by Keebler (Member # 12673) on :
-
It's 10:30 Pacific Time and it's no long even anywhere on their home page.
I saw it the post on their web site very late last night . . . but today, it seems to have been pushed out of the way.
I've seen them keep insignificant features up for a week. Too bad this did not get that honor.
I don't get CNN, but hope they rotate the air time of this as they often do with other features.
-
[ 07. July 2008, 03:11 PM: Message edited by: Keebler ]
Posted by NJLyme82 (Member # 15683) on :
I missed the cnn clip this morning.
Does anyone know where I will be able to see it?
I thought the article they had last night was excellent!
What I liked was that they started with Mandy's story describing her symptoms and her struggle so people sympathize with her THEN they mentioned the IDSA classified what she had as the "aches and pains of daily living".
I think the proverbial you know what is about to hit the proverbial fan, at least in the public eye.
I hope this coverage continues.
Posted by patty7 (Member # 5483) on :
I also saw the CNN segment and thought it was much better than the ABC one.
I did email them a positive comment to thank them.
Posted by NJLyme82 (Member # 15683) on :
I missed this...and the video link is only a 1 minute "snippet" there is more to this..
If anyone finds the full video, hopefully it will turn up on youtube...
I heard this is a MUST see..
Posted by tdtid (Member # 10276) on :
I had tivo'ed it, but have to admit that I hadn't been to the tv yet. So thank you for the like, NJLyme.
Well done!!!!
Cathy
Posted by tdtid (Member # 10276) on :
Interesting glitch but when you look at the link, they have the doctors backwards, but if you watch it from the tv, they have them right. But Dr. C and Dr. F have the wrong names listed under them on this particular link. Hmmmmm.
Cathy
Posted by shazdancer (Member # 1436) on :
I noticed that when I saw it online, Cathy! I'm glad they got it right on the broadcast, I was wondering.
-- Shaz
Posted by jjeennnniiee (Member # 7964) on :
Darn it, I missed it this morning.
I really wanted to watch it too, but just couldn't manage to drag myself out of bed so early.
Does anyone know if the entire broadcast has been posted anywhere on the internet?
If so, could you please private message me the info. on where to find it at?
If anyone knows of any other way for it to be seen, could you please private message me the info. for that?
I'd really like to see it!
Thanks!
Love, Light, & Health, Jennie
Posted by jjeennnniiee (Member # 7964) on :
Quite frankly, I couldn't be more pleased the Infectious Disease Society of America finally got busted for being so outrageously corrupt!!!
The society's members are some of the most vile people, especially when it comes to lyme disease!!!
I earnestly hope & pray each & every one of them are punished severely for all of the lives of those with lyme disease they've negatively affected in an enormous way, from their outright greed & ignorance!!!
Who knows how many people with lyme disease have & continue to suffer all because of them & for no reason whatsoever, not to mention those who've actually lost their lives!!!
It absolutely sickens me beyond belief!!!
It's time for everyone to wake up & see them for who they really are!!!
I'm so grateful the truth about lyme disease is finally being revealed more, now than ever, especially through the media!!!
Let this only be the beginning for those with lyme disease to finally be set free from their grossly inaccurate guidelines & get the treatment they truly deserve!!!
Ahhhhh, how cleansing! I feel better now!
I wish I could see all of the comments others have sent though! Darn it!
Oh well, at least we're keeping the rating down!
For those of you who haven't sent your comments yet, please do so!
We really need to let them know how we feel about them and keep the rating down!
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mtree
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