posted
Wow, people in that CFS forum don't think too highly of those with lyme.
There's actually some animosity and condescension towards LLMDs and those who think they have lyme.
Who knew? Posts: 872 | From New York City | Registered: Jun 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
James, that's a consistent attitude among most non-Lyme forums. They are the least trusted group I've ever heard of, except for maybe politicians.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I was kicked on PH about 2 years ago because I talked about LD. The thing is, I did not push my opinions on anyone, I didn't even know that much about it myself; I was just informing people about what I was learning about LD at the time. It was before I even knew that I had LD. Not sure why they don't want to explore the possibilities.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
It's administered by IDSA members. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I just registered and posted something. I wonder if I'll get booted.
I was on a CFS forum on AOL back in the early 90s. My health had improved, yet not one person asked me what I was doing that might have improved me. Strange.
Maybe they see CFS as "their" illness. We should keep our lymie noses out of their business! Posts: 872 | From New York City | Registered: Jun 2008
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posted
It's incredible. Really. I was diagnosed with the wastebasket label "CFS" and told to go home and rest at 32.
I lived in a Lyme Endemic area. Luckily a girl I knew had lyme and sent me to an LLMD right away and I was positive. Treated for chronic lyme and am now living my life again.
I have a friend with "CFS" and she ABSOLUTELY FLAT OUT REFUSES to get tested for Lyme. Lives in a tick infested area, has all the symptoms. Bedridden. But believes some day there will be a cure.
I really don't understand people who don't want to get well.
Posts: 770 | From USA | Registered: Jul 2006
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quote:Originally posted by Myco: I have a friend with "CFS" and she ABSOLUTELY FLAT OUT REFUSES to get tested for Lyme. Lives in a tick infested area, has all the symptoms. Bedridden. But believes some day there will be a cure.
I really don't understand people who don't want to get well.
Maybe it is xmrv for certain people (or other things NOT lyme). But not getting tested is really stupid - agree
Posts: 856 | From MA | Registered: Jul 2009
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quote:Originally posted by JamesNYC: LOL Seek! Good one.
I just registered and posted something. I wonder if I'll get booted.
I was on a CFS forum on AOL back in the early 90s. My health had improved, yet not one person asked me what I was doing that might have improved me. Strange.
Maybe they see CFS as "their" illness. We should keep our lymie noses out of their business!
That was a good post on the CFS board. I noticed the same attitude, and was going to post something but could not put together a coherent bunch of paragraphs. I'm glad you were able to do it.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
"Psychologically" maybe it is easier to just accept a life long illness, than it is to treat and treat, and hope and hope and wait and wait and never get well.
There is a lot of let down when treating LD; whereas if you just accept that you have an illness without a cure, in some ways maybe that is easier.
Not recommending it though! I plan on never, ever, ever giving up on a cure!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Just thought I'd point out that there's another thread discussing XMRV on this board which some of you might want to read. It was started soon after news of the Science study came out:
I think you may be right. I also think that people tend to become very dogmatic and inflexible. Look at the IDSA, for instance, with their refusal to accept the idea of Lyme persistence. I think something similar is going on here, in that from the early days of CFS research most experts were saying there was a virus at work. Some believed it was an active virus, and others believed that the virus was long gone but had triggered a host of immune events that left the CFS condition. But, from what I remember, all were convinced that there was a single virus at work.
So, like Lyme patients taking the lead from our docs regarding bacterial infections, many CFS patients have taken the lead from these researchers and believe a single virus is at the root of their woes.
Then when XMRV came dancing in last week, it was a validating event for researchers and patients alike; many are looking at it as THE answer. I have no idea how this will play out, but think it likely that it will be another piece of a very complex puzzle.
But who knows, this RV could be the whole thing. Some very smart people think it is. If nothing else, the interest and discussion it has sparked is great. The net is buzzing.
I am optimistic and can't wait to see what happens.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
As a member of both this board and the CFS board being discussed here, I really am saddened at the comments posted on this thread.
The AboutMECFS forum thread on Lyme and XMRV consists of an intelligent discussion of the potential relationship between the two.
Dogmatic and inflexible? Hardly. But some of the posters here appear to be just that!
Posts: 27 | From my own little world | Registered: Oct 2008
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posted
Actually that thread is full of speculation. There are many here who were bitten by ticks, plain and simple. You want to propose XMRV was one of viruses in that tick, go ahead, but that is pure speculation. Many get well on antibiotics if they treat for all the co-infections. I find the ones who don't get well are often the ones who under treat or are convinced to try alternatives first.
I always recommend seeing an LLMD and follow his treatment to the T. My two cents.
Posts: 770 | From USA | Registered: Jul 2006
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