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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. dan062

    dan062 Senior Member

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    Hi guys,

    I'm posting in this sub-forum as connective tissue disease is probably what my labs are most strongly suggestive of. This will be a little long but please bear with me if you can:

    I've had three bloods tests show up positive so far but I still have no diagnosis. Rheumatology and neurology have had no idea and my GP is starting to use terms like 'post viral fatigue' when going through the remaining possibilities.

    My tests are: rheumatoid factor elevated (fluctuating between about 50-70IU/L, which is considered a 'weak positive'); creatine kinase (same story; less than twice the reference range; could even be down to my physique); and LDH (very slightly above the reference range).

    I had understood that as CFS was a "diagnosis of exclusion" that all lab tests were always negative but am beginning to wonder if this is always strictly the case.

    I get a little optimistic at each new positive that arrives hoping that I'll finally have a diagnosis (and start treatment - for something) but, after a year of carrying on like this, I am rapidly losing faith. Physically, I feel terrible, but I guess so do most people posting here.

    Among my symptoms, a few things are suggestive to me of CFS/ME to me: very low ESR (2-3mm) (I've heard that this is common among CFSers); all this came on suddenly after a sore throat; and I have some very weird neurological symptoms like twitching and muscle jerking, which seem common either with something very serious (ALS, CJD, etc, which, after a year of staying about the same, I guess I don't have), or things like Lyme (particularly) or ME.

    People with Lyme, in particular, seem to sometimes get positive rheumatoid factor tests from time to time, so perhaps it's not too much of a stretch to have mildly positive CK and LDH as well, which are both other general inflammatory markers of inflammation and muscle inflammation.

    So to conclude with the crux of my question: in anybody's non-medical opinion, are my labs too abnormal to be compatible with CFS or could this really be a possibility?
     
    Last edited: Oct 30, 2014
  2. Valentijn

    Valentijn Senior Member

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    @dan062 - It's a rather horrible myth that ME patients don't have any abnormal lab results. We have plenty, just usually not ones that show up on basic blood labs.

    That said, I have no idea if your results specifically indicate something other than ME/CFS :p
     
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  3. halcyon

    halcyon Senior Member

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    I wouldn't get too caught up with what may or may not be CFS. We're still too far away from understanding what CFS even is and it's far too heterogeneous to be able to suggest a single treatment for that diagnosis. If you take a look at this thread you will see that we all have all kinds of abnormal lab test results. The "all CFS patients have normal lab tests" meme is false.

    My understanding is that post viral fatigue and CFS are synonymous. I think they even share the same ICD-10 code.

    The symptoms and abnormal labs you have listed are very consistent with chronic fatigue syndrome. That your situation was triggered by an apparent infection is your major clue. Your job now is to figure out what pathogen knocked you down and treat it if possible. It's also good to rule out some of the nastier stuff that you mentioned above as you go along, where symptoms may warrant it, just in case. There is an excellent road map for testing and diagnosis found here.

    Your symptoms (sore throat, muscle twitching) and lab results (low ESR, high CPK) are very consistent with enterovirus infection. Enterovirus is highly suspected of triggering CFS. You can check out this list of common symptoms to see if any more match.
     
    Last edited: Oct 30, 2014
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  4. dan062

    dan062 Senior Member

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    Sorry! I was actually aware that there are a bunch of things that appear wrong with ME people when things are looked at in a research setting (homocysteine levels, etc), but didn't think there was anything that fairly routine tests, such as the above, would uncover.
     
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  5. dan062

    dan062 Senior Member

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    Thanks so much - I'm going to read that thread from top to bottom once I'm finished typing this. And I'll also take a look at the roadmap, too.

    There's a bunch of stuff on that list that's at least as significant as anything they've found with me so far and for me the list of what's normal (including CRP) is a lot longer than the few tests that are 'off'. Strangely, I find this hugely encouraging.

    I was particularly surprised to find stuff as significant as low WCC, low RBC, ANA positivity, neurological test abnormalities, partial heart block, eosiphonilia (I'm at 4%), abnormal electrophoresis, and thyroid antibodies in there. There's stuff in there that could lead off into all sorts of diagnostic directions, from lupus to monoclonal gammopathies, so there's obviously a reason that doctors have for settling on CFS/ME.

    This is actually something of a breakthrough as besides those blood tests my symptomology (an awful lot more than muscle twitches and jerking) is textbook ME and I'd love to start addressing that rather than continuing on this endless 'hunt' for something else. I won't give up the quest for a little while longer but may find more benefit in pursuing this direction.
     
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  6. dan062

    dan062 Senior Member

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    I've actually had a really good workup (at this stage). Everything on 'stuff to exclude' part of the road-map has already been tested for and come back negative -- plus a whole bunch of random pathogens I specifically requested.

    Now to get to what to do about this!
     
  7. dan062

    dan062 Senior Member

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    Symptom-wise the only major one for me that I thought "this has to be more than CFS" is left leg weakness (kind of a shaking feeling when I go down stairs or place weight on it).

    I thought, again, that this has to be something else, but if people with severe CFS can be in wheelchairs and the like I guess this might also have been an incorrect assumption. Anyone agree?
     
  8. Valentijn

    Valentijn Senior Member

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    That does sound a bit odd for ME/CFS. We can have leg weakness due to Orthostatic Intolerance, but then it would be both legs. Similarly, if we over-use a muscle it can stop functioning properly, but I can't imagine how that would only affect one leg.
     
  9. halcyon

    halcyon Senior Member

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    Good to hear you've had a complete work up. It's nice to free up your mind from worrying about all the other "what if's".

    I have apparent enterovirus-triggered ME/CFS. I developed eosinophilia as well, starting at 0% during the acute illness, going up to 5-6% after a few months where it remains today. I've also experienced the exact leg weakness you describe. It becomes very apparent when walking down stairs as you mentioned. I have definitely seen others here complain of leg muscle and pelvic girdle pain and weakness. Elevated CPK can be consistent with muscle damage and enteroviruses love to infect muscle tissue.
     
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  10. dan062

    dan062 Senior Member

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    That's very interesting. You sound like you're going through something very similar. I was looking at Churg Strauss Syndrome for a while (I'm guessing that if you know about eosiphonilia you know about that, too), but that has a few pretty distinctive markers (elevated IgE and ESR being two ones), and they don't tend to experience any of the crazy neurological stuff (CNS involvement is rare, apparently, and I think their neuropathy tends to also be a lot of pain rather than just weakness).

    Have you made any progress treating the symptoms or worked out which enterovirus you think you might be infected with?
     
  11. halcyon

    halcyon Senior Member

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    I haven't dug too deep into the esosinophilia, but yeah everything so far has been mostly inconsistent with my symptoms.

    I've just very recently started attempting to treat the enterovirus with Equilibrant. It's too soon to tell if it's going to help or not but it has mostly caused a pretty big exacerbation of symptoms. Blood tests showed elevated antibody titers for echovirus type 30.
     
  12. dan062

    dan062 Senior Member

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    There are quite a few hypereosiphonilic conditions besides CSS, by the way. Tissue damage is commensurate with the degree of eosiphonilia. But I think it could be a chicken and egg situation in this situation: the eosiphonilia could be an ongoing immune reaction to a persistent enterovirus (rather than an autoimmune reaction), which then triggers some of the damage and symptoms.

    That would explain why, for me too, the symptom list is most inconsistent (or in my case, inconclusive), but some of the symptoms definitely ring true.

    A very interesting one in that link about enteroviruses is decreases sense of smell. I have that big time (not being able to smell properly is extremely depressing for some reason). And a lot of people with CFS seem to report the exact opposite (extreme sensitivity).
     
  13. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    In humans, eosinophilia can be due to allergies and you would usually see an elevated IgE with this. In pets, eosinophilia is usually a sign of parasites, although this can also hold true for humans.
     
  14. halcyon

    halcyon Senior Member

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    Yeah that's about as far as I've got with it. My IgE levels are low and I've had multiple O and P tests come back negative, also no symptoms of parasites. I had not come across Churg Strauss Syndrome strangely enough. It sounds pretty crappy and unfortunately has a lot of familiar symptoms, however those symptoms can be caused by so many other things. Thanks for mentioning that @dan062 I'll have to look into that further.
     
  15. dan062

    dan062 Senior Member

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    I presume your ESR is normal, but you might consider having ANCA, RF, and LDH tested if you haven't already done so to look into CSS further diagnostically (ANCA is a good test for lots of vasculitides). CSS is positive for both RF and LDH in about 80% of cases which is why it's been very much on my radar (besides being asthmatic and having used used Singulair :() but there are also the two negatives above, a negative chest x ray, the fact my IgE is normal, and that I have no hematuria. As I'm sure you'll agree, complex diagnostics is an infuriatingly equivocal discipline.

    The diagnostic criteria usually mentions 10% as the minimum for "significant" eosinophilia, but a vasculitis doc told me that he (personally) would consider 4% significant "if persistent" -- so 5-6% would almost certainly qualify. So yes, definitely something to think about (and at least there's steroid treatment for it. Plus, the grim mortality stats you'll see a lot of are significantly out of date, apparently).
     
  16. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    hi dan, I have definitely positive ANA (though it started as weakly positive). Although I've been followed in rheumatology for years and have other signs of rheumatic disease, I do not fit into any specific rheumatic or connective tissue disease diagnosis.

    My Rh factor, ESR, CRP, and so on have been fine when tested, as have whatever specific autoantibodies they chose to test (they took an ad hoc approach instead of doing an ENA panel).

    Also I present strongly like an MS patient--every halfway sensible neurologist I've met wanted to test me for this, and I do get weak and sometimes dragging leg(s), not always bilateral. Generally the left begins first. However my brain scans are negative for MS.

    I think it is the inability to find another disease box, that leads them to put us in the CFS category. Why "atpyical MS" or "atypical Lupus" or "atypical mixed connective tissue disease" or something like that, would not do, I don't have a clue.

    best wishes.
     
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  17. dan062

    dan062 Senior Member

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    I don't get it either. Especially as I've yet to find an autoimmune disease, of the many I've had a look at, that doesn't rely on some kind of a combination of prendisone, plaquenil, methotrexate, inteferon, etc, to manage symptoms.

    If the treatment's going to be pretty much the same anyway, what does it matter whether we fit exactly into one 'box' or into none at all. To me the whole distinction think (UTCD vs MCTD vs RA vs Lupus vs 'overlap syndromes') just seems like a massively academic exercise in splitting hairs with little benefit to the patients involved.
     
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  18. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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  19. Valentijn

    Valentijn Senior Member

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    My ESR has been consistently elevated since I got sick. CRP was elevated once, but not when tested a couple months later.

    My elevated ESR never got followed up on.
     
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  20. CantThink

    CantThink Senior Member

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    @Valentijn

    Same here re: ESR. In fact my old GP (now retired) said he could use it as a barometer of how I was feeling. The worse I felt, the higher it went. I have never had explanation for it. I have positive ANA (weakly in 2009 - not sure now) which I linked to the AI thyroid disease which I was overtly developing during that ... But then tbh I don't know if it was positive or negative before 2009 as I have no results.

    The ESR thing confuses me as I read that typically it is very low in M.E. patients. As far as I am aware, mine has never been within normal range since M.E. onset, let alone low. I wonder how many other people with M.E. have a consistently raised ESR level.
     

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