posted
So sad that they're reprinting this garbage, and even chose to bold a very misinformed statement that will lead some patients down the wrong path.
Let them know what you think, or at least rate the article (1 star):
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I posted a comment.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Rated the article and left my comment!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I rated it ... you can rate it more than once, BTW.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
)(*!!&^$!^%#!^%$#!%$@!
-------------------- 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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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Gaaahhh!!!! Aaargh!!!
I left my two cents' worth!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I read this with excitment today and actually will be sending it off to an insurance company to help someone get treated.
NOTE what they are now saying.
1. No longer is doxy the cure all and that is the ONLY antibiotic you can use. They admit the more expensive antibiotics are effective. They hadn't said that before.
2. They don't list a time limit for the antibiotics here. If you have those symptoms.. you can be treated. No cut-off date if you have "nervous system Lyme".
3. They admit there are big complications from Lyme and many manifestations of it now... not just a rash and swollen knee.
The ONLY thing that is nasty is that last line.
But...
WE don't HAVE post-Lyme sydrome.. we have what we call chronic Lyme and what they are now calling "nervous system Lyme". Nervous system Lyme gets treated with a choice of antibiotics. Post-Lyme syndrome doesn't... soooooooo....
Think of it in those terms.
Your diagnosis is now called "nervous system Lyme".
Heck, they can call it potatoes as long as they keep saying we can get antibiotics.
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Tinny.....can you tell me who said that and where? Are you saying the IDSA said this??? Just NOW??? Link to it anywhere??? Thank you:}
Posts: 1251 | From california | Registered: Apr 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I agree Tincup thats how i read the article.
They didnt go into detail about post lyme, but they did say the words 'in contrast' which means they are talking about two different items.
Post lyme and nervous system lyme.
Im glad that they are finally mentioning abx other than doxy.
Jellybelly- The link is under the first post in this thread.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Keep the comments coming!! Did you guys recognize me there?? "frankenstein"
Everything I tried to register as was already taken. Tried like 6 names. Finally I decided that no one would be likely to have registered as frankenstein!!!
Didn't want to be too obvious with being called Lymetoo!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
what in the bloody h___???
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
This article is shameful and degrading to all people with Lyme Disease!! It is an insult!
Shame on that Website. They even have a chat room for Lyme Diseas! Why would they allow such on article on their website? Has to be a connection somewhere.
Shame on them!
Hugs, Perplexed Posts: 324 | From Lexington, KY, USA | Registered: Dec 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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adamm
Unregistered
posted
An affront to humanity! Gave it the lowest rating and will post a venomous comment!
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
The weirdest thing about this is that MANY of the members on the Immune Support message boards have Lyme Disease and are on long term ABX. They also have a Lyme Board but it's very inactive. On the FMS/CFS board it is very acceptable to talk about Lyme (which is taboo on many CFS/FMS boards and used to be banned on this one, too)- this has resulted in many more people getting a correct Lyme diagnosis. These same people purchase their products.
I don't understand why they would print this but I intend to find out!
[ 12. September 2007, 09:12 PM: Message edited by: mojo ]
Posts: 1761 | From USA | Registered: May 2006
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
They removed my post!
I wonder if they'll delte the article?
Posts: 1761 | From USA | Registered: May 2006
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quote:Originally posted by Lymetoo: Keep the comments coming!! Did you guys recognize me there?? "frankenstein"
I don't see my post either!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I should have been more specific. I went on the FMS/CFS board and asked about the article and they deleted my post. I addressed it to the moderators and I got an email that said the moderators were volunteers who monitored the board.
So now I'm emailing them - we'll see what they say. I'm supposed to get a reply in 24 hours.
Keep the comments coming.
Posts: 1761 | From USA | Registered: May 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
They would do well to recall publishing THIS article by an esteemed doctor back in 2002:
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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posted
I nearly got banned from immunesupport for discussing Lyme a while back -- and actually, I owe my life to a couple of courageous members on the FMS forum over there for alerting me to the possibility that Lyme might have been my problem.
Same old same old same.... sigh.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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quote:Originally posted by Lymetoo: Keep the comments coming!! Did you guys recognize me there?? "frankenstein"
I don't see my post either!!
I finally found 'em. Click on "Show Sub Comments" on the bottom left hand corner of some of the posts.
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
The top of the article now has a paragraph that reads:
[Note: It is ProHealth's policy to reprint the abstracts of research reported in reputable scientific journals. Our commitment is to keep the patient community informed about what is being published on pertinent subjects - unedited. We also believe it is important and valuable for readers to comment and share their thoughts on these reports, because this is what the scientific community is reading.]
NOT GOOD ENOUGH. I'm guessing we won't be able to find ILAD's guidelines or any anti FMS/CFS articles there! I just sent another email and will be posting another comment
More comments, please.
Posts: 1761 | From USA | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Yes, Lymetoo and I didn't even see you back there!
Some positvie ratings and comments would be great - I always try to give positive feedback, too.
Posts: 1761 | From USA | Registered: May 2006
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