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CFS or not?

Discussion in 'General ME/CFS Discussion' started by Nettle, Mar 5, 2018.

  1. Nettle


    I'm feeling a little overwhelmed, I was diagnosed with CFS/ME by my GP a year ago, this diagnosis came about because all my test came back showing a picture of health and my symptoms could not be explained. My GP is one of the rare ones who does believe CFS/ME is a 'real' condition but admits she know little about it.
    I now not sure if I have have CFS/ME or just a toxic body and I'm feeling very overwhelmed by all the information and treatment protocols - to the extent that I find myself doing nothing out of fear of making myself worst.

    I would class myself as moderately affected. I have OK days and bad days, but I can't see a definite PEM pattern. I had cognitive problems, but I think these might have been due to D-lactate acidosis, they have improved since treating that. I now have brain fog rather than cognitive issues. I also have the pain which comes and goes and also moves around the body, so is not caused by and injury. I have major gut issues/food intolerance.

    I did a comprehensive stool test which showed I had the bacterial pattern of someone with CFS/ME according to the info on Ken Lassenen site. (I also have a Blastocytsis infection.)
    I have low white blood count for over a decade (the only test that comes up with anything)
    I have missing fingerprints.
    I have alcohol/medication intolerance.
    I have POTS.

    Now what makes me think I don't have CFS/ME is that I've recently discovered I have histamine Intolerance, following the diet has helped somewhat. Now with histamine if you have too much in your body the best way to improve your situation is to fast. I discovered that if I don't eat anything for a couple of days I feel great. I have a clear head and my energy is improved. Now if I had CFS/ME this wouldn't be the case?

    I have also been tested for heavy metal toxicity, it came back with very high levels of Aluminum, Lead, Silver, Mercury, cadmium, bismuth. Aluminum being the highest.

    So your thoughts, do I have CFS or is it just bad gut and heavy metals?
    ljimbo423 likes this.
  2. nanonug

    nanonug Senior Member

    Virginia, USA
    I would start by trying to determine why leukocytes are low. Leukopenia has a bunch of different possible causes, some of them would give you symptoms not unlike those of SEID. Wikipedia is your friend here, as a starting point:

    Investigating "follate deficiency" as cause would be high up on my list, including MTHFR status.
    Dan_USAAZ likes this.
  3. Daffodil

    Daffodil Senior Member

    @Nettle it is normal for some CFS patients, perhaps ones with a milder case, to feel better on empty stomach. the disease stems from inflammation in the gut.

    some patients feel much better when taking anti-histamines but it does not solve the actual problem

    in order to determine whether you have it, you could see a CFS specialist and he/she would probably do an inflammatory marker panel and maybe a NK function test as well.

    certain inflammatory markers are elevated in CFS and NK cell function is usually low (but not always)

    Lyme is another possibility and some believe chronic lyme and CFS are the same...but anyway I would see a CFS specialist to know for sure.
  4. PatJ

    PatJ Forum Support Assistant

    nanonug likes this.
  5. What kind of test for heavy metals? Hair, blood, urine? If it's urine, was it a provoked urine test?
    If it's hair, did you also test for minerals (essential elements)?

    All of the metals can cause fatigue. Most or all of your symptoms can be caused by mercury and other metals. Assuming the results from your test are accurate, the aluminum is retained because of mercury, so that's why it's showing so high.

    The symptoms of metal toxicity are extremely similar to ME/CFS. I could so far as to say that a large percentage of people on this forum have issues with metals (but I wouldn't rule out other causes for the disease).

    I have info on the Cutler frequent dose chelation protocol in my signature link. This is what I've decided to work on after years of trial and error and research.

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