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Lessons from ME/CFS: Finding Meaning in the Suffering
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Can you have CFS and Lyme Disease?

Discussion in 'Lyme Disease and Co-Infections' started by Frickly, Apr 7, 2010.

  1. Frickly

    Frickly Senior Member

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    My twin sister was just diagnosed with Lyme disease. Her blood work looked simular to mine as she also has Mycoplamal infection and low glutathione/ATP. My doctor who diagnosed her said that all of these things are consistent with CFS.

    If the criteria for diagnosing CFS is to rule out all other diseases dosen't that mean that, technically, she cannot have CFS? Still....I am sure Lyme and CFS are connected in some way. I would be grateful for any help on understanding.
  2. Min

    Min Senior Member

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    I think I have both; I have a diagnosis of Lyme & co-infections from private live blood microscopy & believe them to be just some of the persistent pathogens causing my ME/CFS.

    Of course XMRV would explain why I can't rid my body of pathogens, but here in the UK the cause of ME/CFS is being covered up by the psychs, chronic Lyme disease is being denied by the health authorities & we have virtually no testing for anything and certainky no treatment unless we are rich.
  3. Esther12

    Esther12 Senior Member

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    It seems to me that it's rather tricky to diagnose an ongoing Lyme infection. I think that a lot of 'mainstream' doctors will be under-diagnosing, and a lot of 'Lyme specialists' are over-diagnosing.

    I think a lot of people diagnosed with chronic-Lyme are really in the same boat as those with CFS - I lack of any clear idea as to why they're ill.
  4. richvank

    richvank Senior Member

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    Hi, Frickly.

    You might be interested in reading a poster paper on this issue that I presented at the most recent IACFS/ME conference. It can be found here:

    http://www.cfsresearch.org/cfs/richvank/link-between-lyme-disease-chronic-fatigue-syndrome.htm

    Some of the doctors who specialize in treating Lyme disease are now giving their patients the methylation pathways panel from Vitamin Diagnostics, and they are finding and treating partial methylation cycle blocks in some of their patients.

    Rich
  5. Frickly

    Frickly Senior Member

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    Wow! Thanks Rich! I have sent this to my sister and think it will answer many of her questions. I wonder if we both have lyme disease which led to this methylation cycle block and CFS? So many questions it makes my head hurt. :)

    Thanks Min and Esther!
  6. rebecca1995

    rebecca1995 Apple, anyone?

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    I've always preferred saying that I have an infection of Borrelia burgdorferi (Bb) to saying that I have Lyme disease. The latter term implies that Lyme disease is the cause of my symptoms, when I don't think we can say that with any certaintly.

    It's always puzzled me that LLMDs, in particular, will see a person who has multiple infections, some of them tick-borne like Bb, and label him or her as having Lyme disease. How do we know that the Bb is the most important infection? What if that person also has HHV-6, EBV, Bartonella and Babesia? One of those infections may be more important. Or what if it's not the infections themselves that are the main problem, but a weakened immune system due to genetic predisposition, toxicity, methylation blockage or something else? What about people who test positive for Bb but are asymptomatic? Have they ever been studied?

    Personally, I think that one can be infected with Bb and also have CFS (whatever that is). It doesn't seem right to me that having Lyme disease is an exclusionary criterion for Fukuda-based CFS. The problem with the Fukuda definition (like all CFS definitions) is that it doesn't depend on objective biomarkers. Down the road, when scientists have broken down the broad construct "CFS" into subsets that correspond to biomarkers, I bet plenty of people with the various biomarkers will also have Bb infections.

    We already see this happening with XMRV. I know of at least three people who test positive for both Bb and XMRV. Assuming XMRV does turn out to be a biomarker associated with a subset of CFS (XAND), then yes--you can have both CFS and Lyme!

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