posted
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.
LocalMan
Posts: 212 | From Eastern CA | Registered: Apr 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
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.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
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!)
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
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.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
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.....
Posts: 983 | From The sky | Registered: Feb 2005
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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
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...
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
So great that Lyme is making the Mainstream News.!! Thank you Brooke!!1
Posts: 1366 | From Southeast | Registered: Sep 2005
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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!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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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!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I was really ticked when I saw that first post by the woman in AZ.. What was she selling?!! The doctor or the product?
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Oh my God!!! 193 comments!!!! Good impact. Thanks Brooke!!!!
Posts: 983 | From The sky | Registered: Feb 2005
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
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
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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posted
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?
Posts: 13171 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
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
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
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?
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Now it is 179.........the highest I saw was 235.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
Perhaps anything considered "deragatory" toward their "medical expert" is being removed?
Posts: 212 | From Eastern CA | Registered: Apr 2007
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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
Posts: 983 | From The sky | Registered: Feb 2005
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posted
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."
Posts: 212 | From Eastern CA | Registered: Apr 2007
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posted
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!
Posts: 983 | From The sky | Registered: Feb 2005
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bettyg
Unregistered
posted
i posted something after listening to download; did any of you see it? guess i was to REGISTER before posting!
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Yes, Betty you have to register, but it's quick.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
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.
posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
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!
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"
Posts: 212 | From Eastern CA | Registered: Apr 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
292!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
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.
john duncan
-------------------- "...reading the Meditations for long periods can be conducive of melancholy." --qtd. in intro to Meditations Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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