Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Lyme Disease and XMRV

Discussion in 'Lyme Disease and Co-Infections' started by Lesley, Jun 16, 2010.

  1. Lesley

    Lesley Senior Member

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    Southeastern US
    My daughter and I were recently diagnosed with Lyme disease. I have been struggling with the question of how Lyme relates to CFS, and whether we really have CFS at all. I came across this on the Columbia University Medical Center website:

    I found this interesting because it comes from a Lyme doctor. The only comments I had heard about Lyme and XMRV prior to this were from Dr. Mikovitz. I believe she indicated at some point that 30% of Lyme patients they tested were positive for XMRV, and that treating both the Lyme and XMRV might be necessary.

    For now, we will proceed with Lyme treatment, and follow the developments on XMRV carefully.

    The quote is here: http://vesta.cumc.columbia.edu/lymedisease/news/user/featNews.php?sel=newsFeat The website is a good source of Lyme information.
     
  2. LJS

    LJS Insert Witty Comment Here

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    East Coast, USA
    I tested positive for Lyme through Igenex and positive for XMRV through VIPdx. I don't really know what to think at this point, I have been under Lyme treat for years with some improvement but nowhere near functional. I wonder if XMRV is playing a role in my slow recovery, there are just so many unanswered questions that I think it is too early to make any connections.
     
  3. SunnyGal

    SunnyGal Senior Member

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    I also tested positive for Lyme through Igenex and positive for XMRV through VIP Dx. I have two very excellent Lyme doctors who work together on a lot of patients and they both say they expect to see their patients start to really turn the corner and greatly improve by 1 year of treatment. When I wasn't turning that corner and wasn't really getting better they both agreed that they felt that it was due to XMRV holding me back, preventing me from getting better. My LLMD said he's very anxious to get me on treatment for XMRV, once the studies are done and treatment options are determined.

    Sunny
     
  4. Gemini

    Gemini Senior Member

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    Lesley,

    Important posting, thank you!

    Any way to send this to Dr. Deckoff-Jones who also had Lyme?

    Gemini
     
  5. Frickly

    Frickly Senior Member

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    Texas
    Lyme seems to be rampant through out our community. I am currently trying to get a diagnosis of lyme as my sister was just diagnosed. I am also having my son tested who has autism. I think we are making some huge steps forward. People are starting to see these connections.
     
  6. Cloud

    Cloud Guest

    Same here on the VIP xmrv+, and the IgeneX Lyme+.....Actually the Bb was marginal, but a definite Babesia+. My LLMD says I wouldn't likely have Babesia and not Bb....so we have been treating both. I have always had great responses to ABX, but don't have a sustained response, even after a year of Tx. So maybe xmrv is the cause of what's being called Chronic Lyme. My doc networks with all the best LLMD's here on the west coast and she agrees that xmrv may be a partner in crime, but she is very much against Tx the xmrv yet.....I have to agree with that especially since I am so med intolerant.
    I too was told by a WPI doc that they are finding much higher rates of Bb and Babesia than other co infections with xmrv. But it doesn't explain it all.....it certainly doesn't explain cluster outbreaks. It's very exciting times watching the last pieces of a huge puzzle put into place.
     

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