I just recieved this email from Brooke Landau this morning... (I got on her list after writing the station thanking them for covering her story.)
quote:Feel free to pass along to anyone you think might be interested as well. VERY exciting news!!!!!!!!!!!
I thought you would be interested in the story of KGTV/ABC Anchor - BROOKE LANDAU. She will be appearing on "Good Morning America" with Diane Sawyer on Tuesday, August 28th. (Most likely between 8-8:30AM but time subject to change).
Brooke says they did over 5 hrs of taping with her in San Diego this week and she thinks it's going to be a FANTASTIC story! She spent a great deal of time talking about the most difficult obstacles we're all facing and the current political/medical controversy, and urged them to include this since it is the MOST important part of the story. On Tuesday she will go live on the set in NYC to discuss the topic further.
Brooke's 12 year battle is almost unbelievable. She literally went to bed fine one night and woke up unable to move from the waist down and neck up -- she wouldn't walk again for over a year and a half. Brooke then lost hearing on one ear, began to go blind, lost her short-term memory, 1/4 her body weight, developed heart problems, spinal menegitis, gall stones, colitis, and a myriad of other problems that finally just resolved this year...after receiving an experimental treatment that was not FDA approved but saved her life. Unfortunately doctors, including Brooke's, are being prosecuted for the treatment of Lyme -- several have lost their licenses!
The story is incredibly important for the millions of others suffering. And now that this horrific disease has affected the President, it seems to be a hot topic of the moment.
Prior to KGTV, Brooke was a producer for the "E! True Hollywood Story", a reporter for ESPN, Evening Anchor for CBS in Arizona and an EMMY winner for a piece she co-produced on her incredible ordeal. She was also a successful high fashion runway model.
. . . [edit: to include date of show in header... thanks BettyG]
[ 25. August 2007, 04:33 PM: Message edited by: Ruth Ruth ]
Posted by bettyg (Member # 6147) on :
ruth, good news!
suggestion: could you enter 8-28 in your subject heading after good morning america ... a helpful reminder so people can set their vcrs, etc. to record this.
to edit, click PENCIL ICON which opens up subject line and body text. when done, click edit send. thanks
Posted by Lymetoo (Member # 743) on :
YEA!!!!!! That's awesome!!! Wish I had a VCR!
Posted by Ann-OH (Member # 2020) on :
I am sure the GMA website will have a video and/or a text story.
Ann - OH
Posted by jasek (Member # 12395) on :
WOW! Thanks for the heads up, i'll be watching and taping.
Posted by hopingandpraying (Member # 9256) on :
As they say "Strike while the iron's hot!" We'll be watching too!
Posted by Lymetoo (Member # 743) on :
Let's keep this at the top till Tuesday!
Posted by Foggy (Member # 1584) on :
A few years ago, a reporter from ABC News interviewed some of us for a story but passed. She said Lyme was an "old story." Apparently not...
Posted by Ruth Ruth (Member # 11059) on :
^
Posted by bettyg (Member # 6147) on :
up
Posted by Ruth Ruth (Member # 11059) on :
^ don't miss this, ok? ^
Posted by Ann-OH (Member # 2020) on :
up
Posted by Soleilpie (Member # 8481) on :
I've set my dvr to record it! I can't wait to watch it!
Thanks for the heads up Ruth!
Posted by Lymetoo (Member # 743) on :
uppers!!!! Posted by Soleilpie (Member # 8481) on :
^
Posted by Lymetoo (Member # 743) on :
^^^ ^^^
Posted by Robin123 (Member # 9197) on :
Does anyone know when this show would air in various time zones tomorrow morning? Like, I'm west coast time...
Posted by Ellie K (Member # 12056) on :
I hope someone puts this up on youtube!
I for one don't get up that early...
Posted by clairenotes (Member # 10392) on :
I hope I am not in transit, taking my daughter to school!
Thanks for posting this info, Ruth.
Claire
Posted by dontlikeliver (Member # 4749) on :
Is there a way someone could record it and/or put on YouTube for those of us outside of the USA who cannot get Good Morning America??
DLL
Posted by dontlikeliver (Member # 4749) on :
Just went to the GMA website to see if there was any way I might watch it online (dream on)...here's today's story on Lyme disease in print though (not the interview with Brooke Landau)..unfortunately it seems to quote only IDSA docs.
I'm glued to my TV!!! Sorry I can't record it DLL !!
Posted by Dave6002 (Member # 9064) on :
Will be starting at 8:00 east time am on ABC
Posted by Lymeblue (Member # 6897) on :
Hate the Dr from Boston!!
"2,3 or 4 weeks of antibiotics earlier on the disease takes cures most of the cases as with Pres Bush"
Explain to me why even after starting doxy 48 hours after being bitten Im still sick!!
Off course doxy didn't treat my babesia, my bartonella, etc.
Love Brook !!!! Love her!!!!
She did a superb presentation..but one more time the edition is the last word and what the viewers perceive.
AND the guy who seems was the "�uthority" on Lyme never warned about/emphazise on how often is unreliable the bloodwork as Brook DID, co-infections, and most people not recalling being bitten so it should be DIAGNOSED according to clinical sx.etc,etc
Brook thanks thanks thanks thanks!!!!!!
I suggest to write to Dr Timothy Johnson the "�uthority" who from BOSTON downplayed our disease:http://www.wchstv.com/abc/gma/timothyjohnson.shtml
Posted by lymedesign (Member # 8791) on :
This Dr seems to be a key person for ABC since he: "is one of the nation's leading medical COMMUNICATORS of health care information. As Medical Editor for ABC News, Johnson provides on-air medical analysis for "World News Tonight," "Nightline" and "20/20."
If we don't write he wont even know, if he knows about Lyme, the odds of spread the facts on lyme would be some how higher..... DO YOUR HOMEWORK people!!!! Let's write write and write include srories, MEDICAL ABSTRACTS facts statistics, etc.
Posted by valymemom (Member # 7076) on :
I just looked and saw there are 152 comments posted on the Owen Wilson story.
Brooke opened the door for us here. I am hoping we post more than 152 comments. Everyone has something valuable to add regarding diagnosis, treatment, and hardship.
I agree, also, that it is important to write Dr. Tim Johnson.....and important to flood the network with suggestions for a follow-up story/segment.
Posted by just don (Member # 1129) on :
Like Dr. Johnsons assertions time after time,,,"The tick HAS to be attached in excess of 24 hours for you to get sick,,,so just find them sooner!!"
PLUS they NEVER mentioned one iota on abx dosage required to 'knock it out early',,,It really sounded like any old abx for a few days and your fine,,,never a mention that MOST docs dont give enough dosage.
AND not a peep about coinfections,,,just lyme. Good info from Brooke,,,as far as it went,,,just never enough time for this subject,,,and MORE details please!!
Posted by shoney (Member # 9925) on :
I wrote-we all need to flood the lines-awareness and press will lead to research
Posted by bejoy (Member # 11129) on :
^
Posted by Foggy (Member # 1584) on :
quote:Originally posted by Lymeblue: Hate the Dr from Boston!!
Hate is a VERY strong word. Disagree w/his opinion is OK.
Dr. Tim is actually VERY cool and sympathetic to those with Lyme. While it may appear "downplayed," I can attest that he's aware of co-infects and our dillema and was really helpful. There is never enough time on a news show to cover all the bases.
Posted by merrygirl (Member # 12041) on :
I posted a comment- Lets keep it going~
Posted by MommaK (Member # 10376) on :
Great News!
The interview is on the www.abcnews.com website. Look under HEALTH ! You may have to look under more videos to find the one titled "Chronic Symptoms, Undiagnosed Disease". It is 7:39 long ! http://abcnews.go.com/health should get you closer there.
I was watching Good Morning America not knowing this segment was coming up this am. When they said lyme disease I was frantically trying to figure out how to use the new DVR feature on our cable and missed some of the beginning.
I don't have sound on my computer, but I think the website may have a longer report than the TV show did! Somebody watch (and listen to it) and let us know!
Thanks, MommaK
Posted by Lymeblue (Member # 6897) on :
Foggy you are right, I was too "radical" in my statement. I was extremely dissapointed.
But when you said: "I can attest that he's aware of co-infections and our dillema " I bet you most of the people can't attest to this like you and what was aired didn't give a clue or hint to his awareness.Thanks for letting me know.
On the other hand, he had time to mention Pres Bush's brush with lyme to emphazise how easy is diagnosed and treated. WHY? Better not to say nothing at all and save some aired secs!
Maybe he didn't mean to, but for me Lyme was flatly downplayed as always. I bet he was instructed, knowing now, after you told me, that he "knows"about lyme....
One more time what was portrayed was a "patient emphazising how bad lyme is" and on the other side an " An IMportant High Profile MD emphazysing the "difficult to catch (at least 24 hours and rash) and easy to cure (Pres Bush's episode) phrase.
Thanks God Brook emphazised how unreliable bloodwork is.
Wondering why Dr Tim was in Boston.
On the other hand Brooke did great...she is amazing....I hope she can read this lines....I know she did a lot to have this segment out no matter what.
Sorry Foggy didn't mean to cause controversy.
Posted by improver (Member # 8380) on :
Watched both tv and web site. They were the same. Here is the address for the page with the video, don't know how long it will be up.
Hey guys check out now the new links posted on ABC web even LDA link appear and other great links...LOVE IT LOVE IT.....http://abcnews.go.com/Health/Germs/Story?id=3530027&page=4
Posted by CaliforniaLyme (Member # 7136) on :
Yay*)!*)!!!!!!!!!!!!!!!!!!!!!!!!
Posted by Lymetoo (Member # 743) on :
Posted by RoadRunner (Member # 380) on :
Dr. Tim is no doctor B. lets get that straight right now.
RR
Posted by Vermont_Lymie (Member # 9780) on :
Thanks Brooke! Watching and hearing about your recovery made my day. Best wishes for your health.
I only watched the first half of the video, with Brooke's interview -- awesome! Did not see the following talking heads, was afraid they would get someone like Steere to speak to...
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Dave6002: Will be starting at 8:00 east time am on ABC
How in the world did I manage to watch this at 8 a.m. CST????
I didn't even think about the time for CST and "went with" the 8 a.m. info.
Posted by 3greatkids (Member # 3838) on :
Great job!!!!
What a lovely person she is. I was so touched, by her mention of the children.The ones sick most of their precious lives.
I wish the Dr. could have been left out of the interview.
Great job!!!
Posted by mjo (Member # 7876) on :
I agree Brooke did a great job and made one important point--how poor the tests are. Her story showed how serious and disabling Lyme can be and that was good.
BUT! So much was edited out and missed. For instance:
Finding a doctor willing to treat is tough. AND Why there aren't enough Lyme docs BECAUSE They're run out of business just like Brooke's doctor. Imagine! For getting people well you get the boot.
The one image that sticks in my head is the bag of pills Brooke took in a day. THAT will hurt us.
Why don't we write asking ABC to make and run a show with what was cut??
Could have fooled me with Tim Johnson. His message was about what I expected, toeing the IDSA line.
Posted by Jellybelly (Member # 7142) on :
I was touched also by when she brought up the children. I even noticed what looked like a little bit of a quiver in her chin as she completed this statement.
Posted by RoadRunner (Member # 380) on :
read 12:42pm post sad story
RR
Posted by Parisa (Member # 10526) on :
Please post comments on the story and also send a comment to the editor.
This is what I sent to the editor:
Lyme disease is an epidemic but it's not recognized as one because the patients are misdiagnosed with MS, ALS, autoimmune disorders, mental disorders, etc.
The doctors who should be diagnosing the patients are ignorant in how to diagnose the disease, if they do decided to test - the tests are inadequate and if they do decide to treat, they are faced with losing their medical license for trying to treat a bacterial infection with antibiotics.
Do doctors who treat tuberculosis lose their licenses because they treat with antibiotics? Why do we have to fight the very system that is supposed to be helping us?
My husband became seriously ill two years ago. We live in California and the doctors here don't really believe in Lyme disease.
One bright urgent care doctor did test my husband about four weeks after he became ill. The test came back negative and we were too ignorant to follow it up despite the fact that at the bottom of the sheet it said he should retest.
A year later, we had the test repeated and it came back positive. My husband has been treated with antibiotics for nine months now and is maybe 20% improved.
He lives in constant pain and there isn't a part of his body that isn't affected.
Below is a site that lists testing for Lyme Disease by the federal government at military bases. Despite what the doctors say, Lyme disease is in California and most states as well.
This would be a great 20/20 or the aforementioned 60 Minutes so the entire story could be explored.
[ 28. August 2007, 08:51 PM: Message edited by: Foggy ]
Posted by kelmo (Member # 8797) on :
I thought she was interviewed for five hours by Diane Sawyer. Will that interview air later?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lymeblue: Hey guys check out now the new links posted on ABC web even LDA link appear and other great links...LOVE IT LOVE IT.....http://abcnews.go.com/Health/Germs/Story?id=3530027&page=4
The problem with that link is that one is IDSA and another is the neuro site (can't remember the actual name) that slam long term abx treatment. I emailed ABC and asked that ILADS and lymenet.org be added for some balanced coverage--hasn't happened yet.
At least ILADS and lymenet were mentioned in some of the comments.
Posted by LocalMan (Member # 11648) on :
At the risk of being redundant...I an new to this chronic lyme !@#$ but I am ****ed about the choice of "expert witness/Dr" for this segment.
I think that Dr watered down, if not ruined, the impact of Brooke's story and the issues lyme sufferers are dealing with. I for one KNOW that there was not a tick on me for "24 or more" hours, no bullseye, etc...and that I WAS treated with anti bios for 8 weeks immediately after but STILL have this !@#$ing disease 4 years later.
I should be thankful that Brooke's story even made it on the air in the first place, but my anger at GMA's choice of Dr's overrides that feeling entirely.
Journalism is supposed to cover all sides of the story. We should be grateful Brooke got to she her story at all.
I would love to know what symptoms she is still dealing with. They said she had her first negative test, but had a long way to go. What does that mean?
I'm sure as bad a case as hers, she would have some permanent damage that will take a while to heal.
Posted by Ruth Ruth (Member # 11059) on :
She doesn't claim to be "cured" only to be in remission.
Note: The ABC page has advertising you have to watch to get to the radio interview.
Posted by valymemom (Member # 7076) on :
Over 125 posts on abcnews.
Keep posting so the numbers/stories overwhelm.
Posted by Ruth Ruth (Member # 11059) on :
If you haven't already posted your comments, you might consider adding a link to ILADS.org so it stays at the top (since they haven't added it to their "links" page, too bad!)
quote:Originally posted by Lymeblue: Wondering why Dr Tim was in Boston. Sorry Foggy didn't mean to cause controversy.
Don't sweat it. He's from Beantown & on an ABC affiliate. He's a rare breed who is the consumatte example of a bedside manner 101 course.
I felt compelled to give him props as he truly is a sweet, sympathetic and kind "old school" MD.
While not a LLMD per se, and at a time of great despair, his objective candor and suggestions motivated me to find a LLMD and get on agressive treatment for Lyme & Co-infects.
Posted by groovy2 (Member # 6304) on :
Nice touch with the link to LymeNet.org at the end!
Posted by Lymeblue (Member # 6897) on :
Good Foggy....
Now after knowing what I know I have the following thoughts.
TO ALL Please don't judge me if my "words don't come all right"....I'm just trying to analize why no matter what we do somehow we have the same results at the end. As when Dr F from Columbia appeared last time.
1) I'm extremely glad about the segment on ABC, at least the words "lyme disease" were mentioned several times.
2) What was reported today on TV is not different from reports done in past years essentially. This frustrates me because every day more studies clearly show the true about Lyme, therefore meaning, everyday these reports are flatly ignoring the facts over and over, every year , no matter what.
3) After Foggy, added first hand , the fact that Dr. Tim Johnson is 100% aware of Lyme, and through his mouth we JUST listened, or subliminally perceived the opposite about his opinion regarding lyme: It hurts!! The same happened with Dr F.
We know Dr Johnson is somehow educated which I find extremely good , but one more time, key personalities on key positions have for many reasons to back off, bringing us down to the almost initial "state" or "point". This is not news in the Lyme Community.
This cycle of reporting Lyme "incompletely" or "ambiguously" has to change for the better.
I'm not asking for a 3 hours documentary on prime time tv, but the use of those few minutes to be aired should at least cover some "basic"or "minimum" facts about Lyme. If not many more years will come with the same results.
But in the mean time during those years we have LLMD's lisenses revoked or retired, sick children,etc
It is a race against time. And I think it would be a good idea to explore new avenues/approaches on how to spread the word. A lot of people is doing a lot these days...but WE need to do more and something different.
We can't espect different/better results with the same procedures already used in the past, specially when there is a well sustained "resistance" from the other side.
The science is even on our side, there is no doubt about it,also important personalities infected with lyme..what are we missing?
A high profile volunteer willing to give up?
Should we analize in depth and more detail how the AIDS activists were finally POLITICALLY heard? Or we need to design our "�WN" srategy since Lyme is not exactly as AIDS? Remember AIDS was linked to homosexuals at the beginning, which I bet was 300 times more difficult to become an activist at that time.
Should we emphazyse instead of Lyme Disease as a tickborne infection as Lyme Disease the cause of most of today's autoimmune disorders and syndromes which most of the times but NOT ALL are acquired throught insects.
My father used to "�motionally" pushed me and keep telling me "� criticize you and demand from you more and more because I know something good will come". go figure!!!
PLease one more time I want to reiterate how gratefull, pleased, and thankfull I'm for todays report but this is how I feel.
Sorry for talking to much.
But I perceive more "�cute" assaults on the other side than from our side, even though we own the science and we don't need to lie on each "�ssault".....
Lets keep doing what we can and never give up.....
Posted by cjnelson (Member # 12928) on :
Check out my post
quote: ABC Segment SUGGESTION PLEASE READ!
Posted by lou (Member # 81) on :
I am extremely bothered that some of the people who posted comments used the names of lyme doctors. What were they thinking? If it is not allowed on lymenet, why post it on a network website??????? Yikes.
Posted by Foggy (Member # 1584) on :
quote:Originally posted by Lymeblue: Good Foggy....
3) After Foggy, added first hand , the fact that Dr. Tim Johnson is 100% aware of Lyme, and through his mouth we JUST listened, or subliminally perceived the opposite about his opinion regarding lyme: It hurts!! The same happened with Dr F.
Subliminally perceived is the key phrase. If you listen carefully to his comments, they're a general fyi for the public. He's not an LLMD nor purports to be. Just a really nice guy who's both a journalist and an MD. In his journalist role, he retains his journalistic integrity by being impartial.
Many of us have a non-LLMD PCP who sit on the fence about Lyme. You can't expect them all to become LL, just tolerant & open minded. ****es me off, but that's the fact.
I've tempered my expectations of the media knowing that reporters often homoginize stories and condense information. Consequently, the finished product is probably different than the bulk of the interview. They also pick the experts and other sources, so interjecting different opinions is often obligatory.
If you've ever been interviewed by the media, and I have, it's easier said than done to cover all the bases. That said, we all appreciate the Brooke's of this world who fight the fight & spread the message.
I've met many dubious, arrogant and elitest academic MDs who were the bain of my diagnostic dilemma. Dr. Tim wasn't one of them...
Posted by Boomerang (Member # 7979) on :
So great that Lyme is making the Mainstream News.!! Thank you Brooke!!1
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by lou: I am extremely bothered that some of the people who posted comments used the names of lyme doctors. What were they thinking? If it is not allowed on lymenet, why post it on a network website??????? Yikes.
I agree!!!!!! I guess some of them are not on Lymenet or they would know better!!!
Posted by cjnelson (Member # 12928) on :
ABC Segment SUGGESTION PLEASE READ
quote: GMA did a great story, in the time frame they had allowed.
I went online to CBS, 60 Minutes and contacted them through the bottom of the screen "CONTACT US"; Chose 60 Minutes show and SUGGESTION.
Suggested they check out the ABC segment and the comments posted. It is a great investigational opportunity that requires MORE TIME alloted to get all the information out!
Please go and post your suggestion too. Maybe if we inodate them with it, they will! Never know until we try...lets hit it while its HOT!!!
I was really ticked when I saw that first post by the woman in AZ.. What was she selling?!! The doctor or the product?
Posted by Lymeblue (Member # 6897) on :
Oh my God!!! 193 comments!!!! Good impact. Thanks Brooke!!!!
Posted by RoadRunner (Member # 380) on :
Dr. Tim was bad period he showed IDSA views.
how about "we think" tick has to be attached 24 hours this is so untrue. A rash can start right away this is facts happen to friend and saw it with my own eyes.
RR
Posted by Lymetoo (Member # 743) on :
CJnelson...FYI:
[ 29. August 2007, 12:41 PM: Message edited by: Lymetoo ]
Posted by Robin123 (Member # 9197) on :
I couldn't get in to the site to post a comment. I thought Brooke did well, and I'm really glad that she chose to do a national interview like this.
Her message was watered down by the other docs. They need ILADS doctors on there.
I wonder if we could call them directly. I'd like to speak to the abc staff about that, especially since I couldn't get in to post.
The stories are so sad to read. They are like the ones on the Oprah site. All I can hope for now is that the public will make lots of noise now about what we need and want.
We do not have to remain silent in doctor offices and take it anymore. If they try to tell us we are crazy, we tell them we are not; we are sick. If they try to say there isn't any Lyme in our area, bring the brochures for your state. That's what I did. Within 10 seconds, the surprised duck was holding brochures about Lyme in California in his hand. It's called taking action. We will tell them what we want, not the other way around.
Someone asked in the comments what the AIDS folks did to get the AIDS activism going. I recall that AIDS activists, as ACT-UP, went to the nation's capitol and threw blood on the steps, saying that AIDS was now in the nation's blood. Interesting, since many now are concerned that Lyme and coinfections are also now in the blood supply and no one is screening for it.
My question then: do we have sufficient tests to test for Lyme and co's in the blood?
Posted by bettyg (Member # 6147) on :
tutu, why did you post jay's post about cbs 60 minutes contacting him when he deleted entire post to all the arguing that took place later with tincup Posted by Lymeblue (Member # 6897) on :
Amazing....223 comments!!!!
Posted by Lymetoo (Member # 743) on :
betty....because cjnelson must not know that 60 minutes was recently contacted.
Posted by bettyg (Member # 6147) on :
Brooke,
thank you for the wonderful job you did on your live interview! i just downloaded it on my dial-up taking 90 minutes to download!
i had programmed it on my vcr, but the tape filled up before i got your portion on it!
What you said was extremely important info in the time they gave you.
were you able to have any input on the final editing of your live interview?
again, thank you for representing us lyme patients internationally!
now, i'll go write the station, etc. Posted by dontlikeliver (Member # 4749) on :
What is going on with the comments page. The last couple of times I checked the numbers have gone from 233 to 198 and 197...going down?
Posted by valymemom (Member # 7076) on :
Now it is 179.........the highest I saw was 235.
Posted by Lymetoo (Member # 743) on :
Are they taking out the duplicated posts??
Posted by Lymeblue (Member # 6897) on :
Something fishy is taking place on that abc threat for lyme experiences.....
Posted by LocalMan (Member # 11648) on :
Perhaps anything considered "deragatory" toward their "medical expert" is being removed?
Posted by perplexed (Member # 1913) on :
I just looked at the article and there were 172 posts....I also posted yesterday.
Did anyone lister to the ABC radio interview with Brooke? It was much better. And no Dr Tim there with his IDSA talk. That was bad.
Hugs, Perplexed Posted by Lymeblue (Member # 6897) on :
Look this post I have copied:
Contribute | If you would like to tell us more facts about this story, please click here to send the editors of ABC News a separate email with the information you have. 187 Comments | Add Yours
Next Page Why are you deleting comments? Wendy Posted by: wendygoodness 5:46 PMMark As Violation
Posted by LocalMan (Member # 11648) on :
Your comment (above) is gone, so are several of my earlier comments....but this just popped up:
"WARNING, what you post here may be edited or deleted so its best to create your post on a Word document, save it, then copy and paste it here. Continue to post it as many times as it takes to remain here, or at least read by others. Create new user names if necessary, do whatever it takes. I am outraged but not surprised. This is ridiculous, what a slap in the face! I question if I'm proud to be an American these days. Our Gov't IS NOT for the people or by the people. Our situation is sad and it will get much worse as our troops return from war. Our future as nation looks grim. Who will be healthy enough to fight for anything? I will continue to fight until Lyme gets the attention it deserves. I cannot find my previous post but I will repaste it here shortly."
Posted by Lymeblue (Member # 6897) on :
WELL now the posts are related to Lyme being rampant in our blood supply system....this threat is getting "acute"......as the joint pains I used to have in the past but not anymore after treatment!
Posted by bettyg (Member # 6147) on :
i posted something after listening to download; did any of you see it? guess i was to REGISTER before posting! Posted by kelmo (Member # 8797) on :
Yes, Betty you have to register, but it's quick.
Posted by lou (Member # 81) on :
I heard that posts were deleted because they did not follow the rules for the site and mentioned names and products, which could be interpreted as commercial in nature.
So, if you post comments, follow the rules and do not mention lab names, doctor names, products you think will help people. Keep to the encouragement to explore the issue further, don't include medical "experts" who have never treated the disease of chronic lyme and who are wrong on testing and most other things, as evidenced in the IDSA guidelines.
Posted by CaliforniaLyme (Member # 7136) on :
Lou I heard that too but my original comment was just my story and had no org info or anything- and they deleted it- I don't get it!!!!!!!!!
Posted by merrygirl (Member # 12041) on :
Here is my last post on ABC
I just wanted to add that as Lyme patient we have a duty to protect our LLMDs at all costs.
Without them we are screwed! Please do not post their names and locations or phone numbers! We dont need people going after them more than they are already.
I say we just keep posting. We are a tenacious (sp?) group of people, if we werent we would be dead by now. Just keep at it guys. We will be heard.
I am so mad right now. The more I think about this BS controversey the more mad I get. We are all suffering badly. We need help. Babies and kids are suffering. I am so sick of it.
We really need to do something, what I am not sure. We need a really strong person (like Brooke) to help us with our plight.
Is it going to take the pope getting sick or what? ( I dont wish it on him I am just saying)
What probably needs to happen is one of these IDSA docs to get Lyme and Co's and they will treat themselves a whole lot differently than the BS they preach.
I dont wish this on anyone, but people have no idea unless they have this friggin disease or their family member(s) have it.
I am done ranting for now... I may be back lol
Merry
Posted by lou (Member # 81) on :
Hmmm, sorry Sarah, don't understand why they deleted your story then. Someone who has itchy delete finger?
The odd thing about the program was that they would air a segment from a patient and they follow it with so-called experts who were saying the opposite. Must have totally baffled the audience. Or maybe it was because the loudmouths like Wormser get recognized as an expert, and it is easiest just to keep calling these guys. Not very ambitious journalism.
Posted by bettyg (Member # 6147) on :
FINALLY ADDED MINE THERE; I'M NO. 252....
BROOKE'S GOOD MORNING AMERICA LYME DISEASE 8-28-07
Thank you ABC for the wonderful GMA show about Brooke's chronic lyme disease story. It was most informative. Thank you Brooke for your articulate and succinct words you chose for the few minutes you were given.
I've had chronic lyme disease for 37.5 years; 34 yrs. Misdiagnosed by 40-50 MDs and specialists with the normal many other symptoms/illnesses: fibromyalgia pain, chronic fatigue, migraines, TMJ, irritable bowel & bladder syndrome, painful periods, GERD, food allergies of gluten: wheat & rye; and of casein: all cow's milk, cheeses, egg whites, & garlic. The list goes on.
We lyme patients highly recommend getting a western blot IgM AND IGG blood test done by 1 of 4 lyme diagnostic labs in USA! Rest don't have the correct equipment to do this sensitive lyme/tick testing!
webmaster, please make this user friendly for us LOW vision folks to ARIAL, 14 SIZE or have the opportunity to have the 2 sizes like your MAIN PAGE! I thank you for thinking of our low vision disabilities too! thank you!
BETTYG, IOWA lyme activist
Posted by psano2 (Member # 11711) on :
I added mine & it's up to 275...
Posted by LocalMan (Member # 11648) on :
Here's a post I just sent straight to ABC news, link is here:
I suggest ABC News do a follow-up on a recent GMA story on lyme disease, but do more thorough research to include opinions of lyme-literate medical doctors. Also, please incorporate the concerns of viewers, posted on your own website, here: http://abcnews.go.com/Health/Germs/comments?type=story&id=3530027
A personal response to this email would be greatly appreciated and show that ABC News is genuinely interested in accurate reporting of important national issues.
Here is response I just received (automated no doubt):
"Dear ,
Thanks for sending us the feedback. We read every piece of information we get from our users, and will forward your contribution to the right people here at ABC News. Please stay in touch.
Sincerely, The ABCNEWS.com team"
Posted by CaliforniaLyme (Member # 7136) on :
292!!!!!!!!!!!
Posted by sunnyslumber (Member # 7065) on :
Thanks Brook! Your interview was very articulate & well-done. Thank-you for being courageous to be the segment's "face" of chronic lyme disease.
It's great having that kind of person here doing local news & Hope you are soon able to get to the point of being pain-free.
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Merry