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Can you have positive labs and 'CFS/ME'?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by dan062, Oct 30, 2014.

  1. Mel9

    Mel9 Senior Member

    NSW Australia

    My CPK was 474 U/l but doctors made no comment. Could it be an inflammation marker?
  2. halcyon

    halcyon Senior Member

    It's a sign of specific tissue damage, mostly muscle.
  3. freshbrew


    Hi Dan062, and all,

    Dan, I am curious on how you are doing now?

    and what if any more info you/ your doctor's found?

    I hope you are okay:)

    My two cents related to that which you asked in your original post

    ( please pardon my brain fog )

    Quick two cents summary:
    The three labs/ results you listed in original post to me seem inconclusive.

    Needing more follow up.

    I am concerned doctors are trying to make a diagnosis on just these.

    1. ESR is an outdated unreliable lab.
    Did I read recently that ESR are old school.?

    Isn't there a new and better inflammation marker now used by physicians other than ESR?
    You mention elevated CK.

    Elevated Means minimal alone or in addition to Just two other labs.

    Unless I read this wrong ( if so please disregard) , I assume your doctor checked your muscle CK s?

    Alone it means nothing.

    It could mean a bruise. Or you coughed too hard recently, recently had dental cleaning, stubbed your toe, had a physically active day.

    There are 3 CK s:
    and ______ CK s if I remember correctly.

    And I think there are some meds, including cholesterol lowering meds That can effect the mm( muscle)CK lab result to read falsely high.

    TOGETHER with other testing, symptom history, activity history , medication list, etc
    an elevated specific CK , like mm( muscle) ck, could point out a person has a muscle wasting issue or other diagnosis etcetcetc.

    alone it means diddly.

    3. Now I forget your other lab.

    4. I think you asked about your labs and if it meant you could or could not have m.e/ cfs and if they could be false positive?

    Regarding false positive, false negative labs and m.e. / cfs:

    There is literature and research ,but especially the trends I noticed as a long term m.e./ cfs person
    that antibodies/ auto antibodies in us cause unreliable lab results.

    One must look at trends( 4-5) of same blood lab results at same laboratory for us.

    We have false positives, false negatives.

    Even Inexplicably high then low for no reason of the same lab at times for me.

    One must look at your whole picture not just a few lab " numbers" .

    Not just once or twice without taking into account you and whole body,
    symptom trend,
    history, compare many many immune system labs as well as the usual labs,
    trends over months, years s a whole.

    Eastern medicine, NDs, homeopathss are better at this but don't usually take insurance:(

    With western medicine, their
    " within normal limits "range

    is so wide that it includes dead people on a cold slab.

    Trends of YOUR labs specific numbers regardless of the " normal range" are what is most important to help put the whole picture together to help you.
    please research any above mentioned items for accuracy if interested. Please Don't rely on my cfs / m.e. fog brain:)
    Last edited: Apr 21, 2015
  4. Valentijn

    Valentijn Senior Member

    I'm assuming it was elevated compared to the normal range? Wikipedia is indicating that 60-174 is normal.

    It can be a sign of some very serious problems, and should be investigated if elevated. One thing it can suggest is rhabdomyolosis, where exertion causes muscles to break down. This can also result in blood in the urine, and kidney damage if there are points where the levels are even high (it varies at times). Some diseases causing rhabdomyolosis might present pretty similar symptoms to ME/SEID, so I'd think your doctor would want to pay attention to it.

    Hypothyroidism and statins are a couple other possibly relevant reasons levels can be high, so might explain a doctor disregarding the abnormal value, if you're known to be hypothyroid or are on statins. But in any case, your doctors should be able to explain why they weren't interested in it.
    SOC and halcyon like this.
  5. sickntired771


    CFS has typically been a diagnosis of exclusion, meaning if you have another illness that may explain fatigue/pain than they count you out on ME/CFS. I think this is starting to change and they are realizing one can have CFS and co-morbid illnesses. Do others agree that it is becoming less a diagnosis of exclusion?
    alkt likes this.
  6. halcyon

    halcyon Senior Member

    ME was never a diagnosis of exclusion. The various CFS definitions are vague enough that they require exclusion of other conditions. The new SEID definition isn't a diagnosis of exclusion.
  7. alkt

    alkt Senior Member

  8. alkt

    alkt Senior Member

    some times one side of the body starts of with pain and weakness often tender spots on underside of foot making walking especially on stairs bare footed quite a trial.in my case the other side of my body very quickly caught up same with arms . i sincerely hope you have something more easily treatable. and have found an open minded doctor who puts your long term health ahead of their budget.

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