posted
I just went to another CFS doctor today to get a viral panel done and suprise suprise she thinks that I have CFS. Her words exactly you have POST LYME/CFS....Post Lyme I didnt even know there was such a thing. I just started my Lyme/Co treatment last week.
I expected that she would say that I have CFS but its still discouraging to hear especially since I have yet to have a herx and am wondering if I ever will.
Mike
Posts: 103 | From New Jersey | Registered: Jun 2008
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posted
Thanks Lymtoo and Adamm I was just wondering because it didnt even sound right when she said it. The only reason why I went there is because my LLMD didnt check for viruses and I really want to see what viruses are reactivated.
Mike
Posts: 103 | From New Jersey | Registered: Jun 2008
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posted
I purchased Cure Unknown but havent finished it. I think that is where I heard the term Post Lyme. How could it be Post Lyme when I just sterted treating Babs last week.
Posts: 103 | From New Jersey | Registered: Jun 2008
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posted
The dr you saw probably has never heard of babesia....and if she has, has no clue how to treat it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Post Lyme is what the IDSA calls Lyme after it's been treated for what they consider to be appropriate. Since your CFS doc probably goes by their guidelines, that's what she calls it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Ive got a sibling who tested postive for lyme, and after only a short time on doxy, the dr said she was cured and her recurring symptoms were "post lyme syndrome"..and the inflammation and host of other problems were cfs and fibro.
Thats a bunch of crap.
Dump the hmo drs, and get yourself to a good LLMD. Most hmo drs (neuros, IM, family drs) all follow the hmo/cdc standard protocols for dx, and treatment. They will create fancy sounding names to cover the fact that they just dont know how to treat it.
Posts: 514 | From . | Registered: Apr 2008
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posted
Is there such a thing as post-lyme for some, I believe there is...not in the IDSA-sense however.
Not everyone gets 100% of their heatlh back, regardless of whether they went on antibiotics for 20 years. For some it may be their immune system isn't working appropriately, for others it is permanent neurological damage...others have had to have heart pace-makers implanted or have permanent hearing loss.
I think it is VERY difficult for many of us to distinguish what symptoms are attributed to active, chronic infection versus damage that isn't going to be repaired by any amount of antibiotics.
I think the definition of Post-Lyme is not clear and unfortunately the term comes from a group of MDs that do not believe in persistent infection and downplay the severity of this disease...therefore, the term feels very negative for all of us....not to mention none of us want to feel like we can't reverse our health issues.
Until there is a better understanding of lyme and some diagnostic markers for determining active infection versus "post-lyme" we will continue to ask these questions.
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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