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Autoimmune antibodies - testing issues help needed

Discussion in 'Immunological' started by Justy, Nov 26, 2017.

  1. Justy

    Justy Senior Member (Voting Rights)

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    A couple of years ago a test, done at the University Hospital in Brussels, showed low level Anti nuclear antibody positive with a speckled pattern (1:80).

    When i asked my UK GP to repeat the test it came back negative. I thought nothing more of it as the result was a low titre.

    At the end of 2016 the test was repeated by the Hospital in Brussels and this time the titre has increased to 1:60. This didn't surprise me as i have MCAS as well and this result is common in PWMCAS.

    I recently told my UK GP and she re did the test here, and yet again it came back negative.

    Can anyone explain why this would be? Its not as if it was a dodgy lab in Brussels. Now The NHS wont accept i have any level of autoimmunity, which if i do might help me to access care of some kind. My GP now wont re refer me to the rheumy.

    Can anyone explain why this might be?

    I also have chronically elevated IGM - but only elevated by a small amount.
     
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  2. Gingergrrl

    Gingergrrl Senior Member (Voting Rights)

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    I do not know the answer but I know some rheumy labs are more sensitive and can give "false positives" especially if they are right on the border. My ANA was always negative at 1:40 until 2016 when it shot up to 1:160, speckled pattern, at the same time I tested positive for all the auto-antibodies. I also have chronically elevated IgM, but only elevated by a small amount, like you. So far, no one is concerned about this but we continue to monitor it.
     
    Last edited: Nov 27, 2017
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  3. Valentijn

    Valentijn Moderator Staff Member

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    Did you see the results yourself? The GP might be interpreting a low level as negative instead of telling you the actual value.
     
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  4. AndyPandy

    AndyPandy Established Member (Voting Rights)

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    Hi @Justy

    I too have had positive ANA results with speckled pattern.

    Mine have fluctuated between 1:320 and 1:640. I have been told that results can vary over time.

    No one (GPs and Rheumatologists) has shown any particular interest in these results.

    I haven't been diagnosed with MCAS but have multiple intolerances and reactions to food, chemicals and drugs. This seems to be worsening over time.

    Just recently I had an unexpected episode of what I think was histamine induced facial flushing (bright red) and shortness of breath. First time this has happened so I am now very wary and carrying antihistamines.

    Best wishes Andy
     
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  5. Gingergrrl

    Gingergrrl Senior Member (Voting Rights)

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    Andy, can you remind me if you have been tested for any specific auto-antibodies since your ANA titer is so high?

    I am so sorry and know how scary this is. Do you know what the trigger was? Please carry anti-histamines with you and if you get any reaction where your throat starts to swell/tighten ask for an EpiPen just to be safe.
     
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  6. Helen

    Helen Established Member (Voting Rights)

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    Good point. I have nothing to add to this discussion, but I have experienced that specialists interpret lab results quite different than GP´s do. This happened to me when testing for B12, potassium, ferritin, IgM and IgG for Lyme among others.

    @Justy, I do hope that you can get this sorted out, and that you´ll get the help you need.
     
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  7. Justy

    Justy Senior Member (Voting Rights)

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    Interesting....have they given any possible explanation for this? Afrin suggests, in his book, that PWMCAS get all sorts of little anomalies like this. Wish i had your Drs and access to healthcare, Ginger. I am so very happy for you though and follow your progress with much joy.

    Yes, lab results just said negative. I also saw the original ones from UZ Brussels.

    I'm s sorry to hear this, Andy. Sounds very much like possible MCAS issues. I dont know what the state of play is in Oz with MCAS Drs. Really hope it doesnt happen again. My experience, and that of others is that MCAS can tend to 'step up' over time, so it might be worth thinking about that now.
     
  8. TrixieStix

    TrixieStix Established Member (Voting Rights)

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    @Justy There are a few different possibilities that could explain why the 2 labs are getting different ANA results.

    " The antinuclear antibody test is performed with different techniques in different laboratories; some techniques are more sensitive than others, such that one laboratory may find a (usually weak) positive test while another finds it negative. There are several methods used to test for ANAs which further complicates the interpretation and comparison of the values obtained."

    Could you find out the method used by each of the 2 labs to see if they differ? I have done this in the past by contacting the labs directly.

    Also... "Some medications can cause a positive ANA."
     
    Last edited: Nov 27, 2017
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  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Dear Justy,
    There are various possible explanations. Titres do go up and down so the results may be real. More likely the labs are using different methods or thresholds. Until recently I would have said that standardisation in the NHS is as good as any and probably better than in a commercially driven health care system like Belgium. More recently NHS tests have been farmed out to commercial labs and it is quite possible that they are no good.

    In reality I do not think an ANA result on its own would make a difference to whether or not someone was given treatment. Treatment remains dependent on evidence for a particular immunological end organ effect - like rash or nephritis or arthritis or whatever. At the moment ME type symptoms are not looking as if they justify any known treatment aimed at underlying immunological change.
     
  10. Justy

    Justy Senior Member (Voting Rights)

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    Thank you very much for your response, i appreciate you taking the time.

    For me personally I no longer have just M.E type symptoms. I also have: diagnosed Mast cell activation syndrome, EDS H, possibly POTS, a mitral valve prolapse,double pelvic organ prolapse, fibrosis in my lung, chronic coccydynia of unknown origin, arthritis and a persistently elevated IGM. A lot of these issues fit with either EDS or MCAS, but not M.E.

    Of course im not asking you for input here, just saying that i am no longer a straightforward M.E patient (if such a thing exists).
     
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  11. Gingergrrl

    Gingergrrl Senior Member (Voting Rights)

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    No explanation so far and my doctor thinks it could be related to me doing IVIG except that I had slightly elevated IgM before I ever started the IVIG. He is continuing to monitor it but since it remains just slightly elevated, he does not seem concerned. I have researched "MGUS" and that it can lead to cancers but no idea if there is a certain level that makes it become a concern or warrants further testing.

    I agree, Trixie, and some labs are very sensitive with different testing methods that can yield false positives.

    I am confused by this statement and thought that the core of ME was immune dysfunction (am not referring to myself and just in general).

    I agree and am not sure that any of us are straightforward on anything!
     
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  12. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    Did they not show the actual test result along with the ref ranges?
     
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  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It seems that this idea became popular, particularly in relation to the claim that NK function was abnormal. The name CFIDS was coined. This all seems to have started with a suggestion that ME was somehow like AIDS. But the evidence for immune dysfunction has not really held up. So while it may turn out that some ME has an immune basis we do not as yet have any reason to think immune dysfunction is 'the core of ME'.
     
  14. Justy

    Justy Senior Member (Voting Rights)

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    No- literally just said the lab they were done at and then ‘negative’ all the other tests had reference ranges.
     
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  15. Justy

    Justy Senior Member (Voting Rights)

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    Of course for those of us with MCAS and M.E, it could be true that we have an immunological dysfunction. Primary MCAS is an immunological disease, secondary MCAS is caused by an assault of some kind on the immune system such as bacterial infections or viruses. In some people it may be genetic in origin, but there is no doubting its effect on the immune system.hence why immune suppressing drugs are used to treat it, or as in ginger girls case IVIG.
     
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  16. duncan

    duncan Established Member (Voting Rights)

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    This really hits straight at one of the main issues with characterizing ME/CFS, i.e., what is causal vs what is a downstream effect. That we don't know yet is frustrating, especially for those of us who are long term sick.

    Like @Justy , I have immunological markers like low NK cell function, low IgG and am being tested for MCAS. Regardless, I will not know if any of these immune irregularities are secondary to something else, even though I strongly suspect they are. Talking to ANY GP about the implications for just basic life management is maddening.

    I can give a non-ME example of my wife, both in terms of differentiating a downstream effect from a primary diagnosis, and in terms of doctors' ignorance. In this case, it is inexcusable because a bit of research elbow grease would spare a patient not just discomfort, but potential harm.

    My wife has Andersen-Tawil Syndrome, which is a form of Periodic Paralysis. There is a chinese menu of symptoms sufferers are subject to, but all of these symptoms ultimately revert back to a single mutated gene, KCNJ2, which results in a potassium channelopathy. Her major manifestation is Long QT and cardiomyopathy, both of which nearly killed her a couple of times. She has three cardiologists.

    Every medical issue or approach gets funneled thru one or more of these cardiologists. Each of these sees my wife's life thru their prism, and that only casts a particular hue on cardiac issues. Cardiologists typically sit atop the medical food chain, at least in my experience. But in the past 12 months on at least two occasions, these cardiologists gave her recommendations that were ignorant of PP, and could have caused her harm. They were focused on secondary - but essential - cardiac manifestations, but forgot about what the primary cause was.

    Once, a cardiologist wanted her to go to monitored exercise. This sounds reasonable on the surface, but Like pwME, PP patients can react differently to exercie, For my wife's form of PP, she is not at high risk when exercising. It is while at rest, sometimes hours after exercise, that an episode can occur. So monitoring her heart while she is exercising, while appropriate for the average cardiac patient, is almost a waste of time, and certainly contributes to a false sense of security for some PP patients.

    Most recently, one cardiologist wanted my wife on statins due to elevated cholesterol. I appreciated his logic, certainly, but his advice was made in a vacuum that seemed not to take PP into consideration. On three separate occasions in a few short months she tried different statins, and each time she became bedridden. I found out that statins are frequently contra-indicated in PP patients. I went with her to the cardio. He was giving her still another lecture on why it was essential that she be on a statin, and I interjected that periodic paralysis patients are often intolerant of statins. He glanced at me in annoyance and turned back to my wife and said, "So, ok, statins cause paralysis in you periodically...." My wife does not suffer bouts of paralysis, and she never has. Many PP patients do not. He went on to say he still wanted her to try another stain option. But my jaw still hurts from hitting the floor when he said that as it dawned on me he did not know what periodic paralysis was - and it was PP that is driving my wife's symptoms.

    So, I know intimately that getting to the core cause in ME/CFS is essential. Unfortunately, this might take a while. In the meantime, I will take some of those secondary effects such as immune dysfunction and POTS etc, as they are all I have to offer the medical mainstay. But it sure makes it difficult to talk to most of my doctors.
     
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  17. Justy

    Justy Senior Member (Voting Rights)

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    Yes!!
    M.E may or may not be immunological, but MCAS definitely is. M.E may not be autoimmune but POTS often is. I now have a host of co morbid dx that each consultant looks at through the lens of just that process, as if its not all being driven or affected by something else.
     
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  18. Gingergrrl

    Gingergrrl Senior Member (Voting Rights)

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    @Justy, is it possibly to request your old medical records to see what the actual ANA titer and pattern were?

    In my case, once we figured out that autoimmunity was literally driving everything (POTS/Dysautonomia, MCAS, muscle weakness, etc), and I got on the right treatment after 3-4 years of trying the wrong treatments, I began to have significant improvements. I know there must be other people out there like me, especially after watching Dr. Schofield's presentation in the video from Dysautonomia International. But my case began with two viral triggers and toxic mold exposure. We do not know when it specifically shifted into auto-immunity, only that it did.

    @duncan, this is so frustrating to hear about what your wife is going through, but not surprising at the same time. The Cardios and Neuros are at the top of the food chain as you said but regardless this is inexcusable to me. I have been offered treatment suggestions by Neuro's that literally could have killed me if I did not do my own research. Good for you for advocating for your wife against statins.

    Treating the immune dysfunction (in my case auto-immunity) plus MCAS and POTS has been life-changing for me. I still have POTS, and probably always will, but am watching each symptom go into remission from treatment. The ME/CFS label (whether I truly had it in 2013 post-mono or I never had it) only held me back and treatment was denied from me. It was not until I found my ME/CFS specialist more than two years post-mono, that I was treated with the utmost respect and taken seriously. And ironically, he is the one who ultimately said that he does not think ME/CFS is my diagnosis after all (of course with no bio-marker there is no way to prove or disprove this).
     
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  19. Justy

    Justy Senior Member (Voting Rights)

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    The test result i saw was from my records. No titer noted, just negative.
     
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  20. Inara

    Inara Senior Member (Voting Rights)

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    What actually means that ratio 1:60 and so on? And when would you say "this might hint to autoimmunity", e.g. if ANA > 1:60 or 1:80 or...?
     

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