Topic: Study - Inaccurate Information About Lyme Disease on the Internet
twoangie
Frequent Contributor (1K+ posts)
Member # 1636
posted
Here's the breakdown on the table from the internet study. The authors reviewed the internet sites for the following information: tick bites, diagnosis, serology, other tests, chronic lyme, Treatment, Pregnancy, Breast-feeding
I broke down the table to see, basically, how polarized they were (as if I needed to bother!). Answer = VERY!
The following sites were deemed accurate on only one or two items. I listed the ones that were consider accurate for each site:
www.lyme.org = Lyme Disease Foundation = Diagnosis and Serology www.lymealliance.org = (has this site been taken down?) = tick bites and pregnancy www.lymedisease.org = CA Lyme Disease Assoc. = Diagnosis and treatment www.lymeinfo.net =other tests (did they completely ignore all the abstracts citing medical research???)
1: Pediatr Infect Dis J. 2004 Dec;23(12):1105-1108
Inaccurate Information About Lyme Disease on the Internet.
Cooper JD, Feder HM Jr.
From the *University of Connecticut Health Center, Farmington, CT; and daggerConnecticut Children's Medical Center, Hartford, CT.
OBJECTIVE:: Patients and families searching the Internet about Lyme disease may find conflicting information. Our purpose was to review the accuracy of information on Lyme disease easily available on the Internet. METHODS:: We used 15 search engines to find general information about Lyme disease. We found 251 Lyme disease websites, which we reviewed. Of these 251 websites, 19 gave general Lyme disease information and were analyzed. We evaluated the accuracy of information concerning 8 Lyme disease topics. RESULTS:: Ten of the 19 websites gave accurate information and 9 of the 19 websites provided inaccurate information. There were 8 websites with the word "Lyme" in the domain name, and 7 of the 8 sites gave inaccurate information. There were 2 ".gov" websites, and both gave accurate information. CONCLUSIONS:: Patients and families searching the Internet for medical information about Lyme disease may encounter inaccurate information.
PMID: 15626946 [PubMed - as supplied by publisher]
[This message has been edited by twoangie (edited 04 January 2005).]
[This message has been edited by twoangie (edited 04 January 2005).]
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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twoangie
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posted
So, here's the question...
If these guys were allowed space in this journal to publish flawed studies, basically slandering the information contained on the sites that have been deemed unworthy by some moron "researcher" of their choosing...doesn't this mean that the journal that was fool enough to publish this information now is obligated to give the other party an opportunity to respond? After all, the journal has published negative information so I think that by law, the other parties, the injured parties, should be allowed to reply.
Frankly, if this is the true, then this could actually be an opportunity. In fact, 10 separate opportunities if each of these sites takes the time to carefully formulate replies...and space them out over a few months so the replies will be in several of their journals. I think that this could actually be used to the advantage of raising awareness with real, valid information backed by research and not rapid replies because each group knocked here has an opportunity to defend themselves and actually educate a lot of doctors. This may help prevent one or two kids from suffering when they should not have.
They should have thought a little harder before backing these groups into a corner that contains a door...!
Angie
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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OptiMisTick
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[ 25. February 2008, 02:23 AM: Message edited by: OptiMisTick ]
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twoangie
Frequent Contributor (1K+ posts)
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posted
Email me and I will forward it to you. I sent a copy to Lovey but I didn't know your address.
What do you think about all the groups that were knocked deserving equal time in the journal? I think it is only fair if the journal is discrediting them publically then they should have the opportunity to respond with a defense, right?
By the way, I'm very surprised that none of these groups were contacted and informed that they were to be included in this "research" by either the authors or the journal. Very surprised because I would believe there should have been some accountability.
Angie
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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posted
Before I got Lyme, I was under the impression that most of what was published in journals was accurate. What a shock to learn that so much crap gets in.
A study showing THIS would be eyeopening, but then most people are probably like me in not realizing the situation until faced with it personally.
And it isn't just Lyme. Bias, ignorance, corruption, conflicts of interest. All there in medical research (and diagnosis and treatment and journals).
[This message has been edited by lou (edited 05 January 2005).]
Posts: 8430 | From Not available | Registered: Oct 2000
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I hope the guy guy's that said these things get just what I had. Walk in our shoes would take this mindless blanketing away What misjudgement.Because there in there own club and they are safe. Lets see what happens to these idiots when this whole lyme thing is fully understood.
They will slither away without even a apology to all the people whos lives they impacted.
I guess Lida Mattman who won the Nobel Piece Prize (back when it was worth something) Is wrong too.!
I really hate mens sins Not only does it effect them but hey what hell share it with everyone else. I guess there oath meant nothing.
[This message has been edited by treepatrol (edited 05 January 2005).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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posted
I wish they mentioned what they felt was inaccurate. I, for one, am constantly questioning everything I read everywhere.
Posts: 133 | From Rocheser, MN, USA | Registered: Dec 2004
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posted
Actually, I just finished reading the material on WebMD and it was some of the most concise, informative information that I have seen since I received my diagnosis.
Posts: 133 | From Rocheser, MN, USA | Registered: Dec 2004
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tritchie1
Unregistered
posted
When I first became ill four years ago, I researched lyme disease at webmd, and a couple others. Unfortunately, I believed what I read there, and thought I had to have remembered a rash and have all the symptoms listed. I didn't on either item. What's crazy is I remember reading this stuff, and coming back over and over thinking to myself, this disease fits, almost. If only I had the information I have now, I would probably have been able to get cured right away. Instead, here I am, four years later, still sick because of sites like webmd. Just my two cents!
dontlikeliver
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posted
I'm curious who paid for this study.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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twoangie
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Member # 1636
posted
Last night I emailed the webmasters as well as some members of the affected groups. I directed them to this site in case they wanted to get together to organize a response. However, I'm thinking this site may be too public for them to strategize.
I've personally received responses from several people but no one has suggested an alternate site. If anyone checks in here but is hesitant to post, you are more than welcome to email me. I may be working with Cheryl from Lymeinfo and we are debating on the best response but want to see what the rest of you are thinking before formulating a reply.
Thanks,
Angie
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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twoangie
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posted
deleted
[This message has been edited by twoangie (edited 05 January 2005).]
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Letts organise!! We need to treat these two Ducks like we did STEERE and fast. What complete morons they are!!! MADDOG
Posts: 4000 | From Ohio | Registered: Oct 2000
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posted
Hey treepatrol, just for the record, Dr. Mattman was nominated for the Nobel, but not selected. In my opinion, she did deserve it and the future will show that alternate forms of pathogens are causing many diseases.
When you read medical history, the main lesson is not just that there was so much human nature mixed in with science and hindered its progress dramatically, but that this influence has not changed, is still very much with us, AND NO ONE SEEMS TO NOTICE OR CONSIDER HOW WE COULD AVOID THESE PITFALLS. Can't we learn anything from the past, or do we have to keep goofing in the same ways?
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Quite possibly the information on WebMD has changed. The first three articles that I read all mentioned that the rash is not always present. They also discuss how difficult it is to diagnosis and the importance of finding a doctor with experience treating Lyme Disease. I'm not associated with the site nor would I necessarily endorse it; my point was that I got the impression from people here that it was worthless and was surprised to the contrary.
I understand though that your point is that some websites that are providing tremendous support are being portrayed poorly.
Posts: 133 | From Rocheser, MN, USA | Registered: Dec 2004
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OptiMisTick
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posted
[ 09. March 2006, 03:07 PM: Message edited by: OptiMisTick ]
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twoangie
Frequent Contributor (1K+ posts)
Member # 1636
posted
Miss Tick,
Hey there,
Was there more to the article than what I sent? I'm confused. I copied about 10 pages of information after the abstract in that email. People are wanting more information but that's all I have. I don't have all the research articles which are listed. Since I obtained a copy of the article my links don't work. Even if they did, I would not be able to use them because I am not authorized. Sigh.
It is amusing how these men feel it is up to them to define Lyme Disease, to reduce this complex, living and ever-changing creature that is Borrelia to something simple and completely known. They think they have it corraled and boxed now, that there is very little more to know when the truth is, we've barely glanced the tip of the iceberg on this one.
It's also kinda funny how they keep using their old research to back their stance and ignore the fact that there is so much new stuff being published from around the world supporting the beliefs of ILADS and all the other Lyme groups affected by this miserable disease. Their research goes round in circles as they just pat each other on the backs and constantly reinforce what the others said in previous research. If they are not being paid off then it seems very obvious that they are the most insecure group of researchers out there. Do they ever break new ground? I'd think rarely because they don't want to do so, not only would it separate them from the herd, it would force them to go back and correct all their errors as well as appologize to everyone they disabled. Like that will ever happen, too many lawsuits
I hope our guys FRY them!!!
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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OptiMisTick
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posted
[ 25. February 2008, 02:25 AM: Message edited by: OptiMisTick ]
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Wow, you guys are incredible! Is there any way somebody could scan the article and make it available somehow - either posted here or by e-mail on request?
OptiMisTick, your analysis of how and why this erudite study was done is right on the money!
posted
During our darkest days when each day my daughter got sicker and sicker and no one would treat her, we found lymenet. We told our dr about it and all the people with similar stories and similar symptoms. She told us that all of these people do not have lyme and to be very careful. She said she was a Hopkins dr and medicine is black and white, there are no grey areas. She warned us about all of these sites giving out wrong information. Long story short,we no longer see her. We see Dr.J and our daughter is almost back to normal.
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OptiMisTick
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[ 25. February 2008, 02:25 AM: Message edited by: OptiMisTick ]
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LeapinLizards
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posted
How do you know what websites to trust?
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mlkeen
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Member # 1260
posted
If the sites that are deemed "wrong" are just that, what does it means if my/our symptoms, diagnosis, treatment and healing doesn't follow the "right" sites but the "wrong" sites.
posted
Pathetic, isn't it?!
Posts: 96223 | From Texas | Registered: Feb 2001
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Softballmom
Frequent Contributor (1K+ posts)
Member # 6235
posted
I believe the (deemed) completely wrong. Because I spent 7 years seeing Dr's that believe the (deemed right) while the whole time I had Lyme Disease and did not even know about until until 7 years later after a stroke and seizures and countless other problems. I stumbled upon a person that believed the (deemed wrong) that told me about Lyme and I found a great LLMD that has a great deal of knowledge in the (deemed wrong) and had my blood sent to a (deemed wrong) testing center that came back positive for Babs and equiv. for Lyme (25 bands). And now I am under (deem wrong) treatment and I believe that one day I will be a healther women because of it.
Cindy
Posts: 1331 | From North Carolina | Registered: Sep 2004
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twoangie
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Cindy,
Hi there, so sorry for all you've gone through (and everyone else here as well!) but I noticed that you had seizures and wanted to stop for a minute and advise you to really limit the processed foods you may be eating, if you haven't already done so. The reason is that many of those foods contain neurotoxins. These are chemicals added to the food to enhance the taste or help preserve the foods. Unfortunately, these chemicals are very bad for a great many of us with neurological problems.
For a scientific explanation, you may want to refer to Russell Blaylock's book, Excitotoxins. For an easier read, check out www.truthinlabeling.org there's a lot of good information there that is easy to understand.
When I was eating processed foods, esp canned foods (soups) and prepackaged meals, I would have horrible electrical storms in my brain along with much heavier neurological symptoms. Limiting these foods has helped me greatly.
Hope this helps,
Angie
[This message has been edited by twoangie (edited 14 January 2005).]
Posts: 1993 | From Charlotte, NC, US | Registered: Sep 2001
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Softballmom
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posted
Thanks for the info. I did start on Topomax which is controling my siezures. i haven't had one since September 3 weeks after I started the medication. However I do have many other neurologic symptoms so I will look into that. I do eat alot of processed foods.
Cindy
Posts: 1331 | From North Carolina | Registered: Sep 2004
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posted
the people who participated in this article at every level are criminals. Perhaps not as defined by any legal construct, but morally and ethically these people are sick. I hope I live long enough to see them suffer as I have.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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