The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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me/ms/lyme/lupus??

Discussion in 'Immunological' started by Fuzzyhead, Sep 29, 2015.

  1. Fuzzyhead

    Fuzzyhead Senior Member

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    EBV IgG reactive
    Autoantibody screen showed positive nuclear antibody with homogenous HEp2 pattern.
    Outranged serum lipids.
    ALT been high then normal.
    Low vit D.
    Ccp antibody weakly positive.
    IgM slightly raised.
    High rheumatoid factor.
    3/4 brain lesions.
    Chilblains.
    Saw 2 rheumatologists who say i don't have Rheumatoid arthritis or lupus. Saw a neurologist who did a lumbar puncture and evoke potential test for ms and both were negative. Been ill 14yrs.
     
  2. justy

    justy Donate Advocate Demonstrate

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    Hi Fuzzy - I have been through this myself - although despite neurological symptoms have never seen a neurologist or had brain scan. Lupus was highly suspected in me, but all Lupus specific tests were negative - just have speckled ANA.

    In the end I went to see an M.E specialist who dx Lyme with co infections based on symptoms, direct testing for chronic infections and immune testing.

    You say you saw two rheumys, but really it depends which rheumatologists you saw. I have come to see that any old consultant wont do. Find out who is the the top Lupus Dr in your country/area and book to see them if you haven't already. Not sure about the MS - I think it depends on the number, size and location of lesions - but as you say LP etc negative so I think that rules that out. Lesions are common in M.E and in Lyme. Immune abnormalities such as + ANA are also common in people with longstanding Lyme disease.

    What country are you in? perhaps people could point you in the direction of a the right Dr if they knew?

    Have you been tested for Lyme? seen a LLMD?
     
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  3. taniaaust1

    taniaaust1

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    who really knows.. So many of those things can be very hard to rule out and I've heard of people being given things like atypical MS diagnoses. As justy said, often one needs to see specialists in certain illness fields and then end up with a diagnoses of something.

    Many of the test abnormalities you mention having are quite common in ME people eg low D, brain lesions of a certain type, non specific abnormalities on ANA tests (I have had a speckled ANA test like many of us), ALT high at times. The one thing if it was me I'd look into more would be the high rheumatoid factor but then you said you'd seen a rheumatologist who didn't come up with anything.

    If you fit the international ME diagnostic criteria, that may well be your best fit if you've seen specialists in the other things.
     
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  4. Fuzzyhead

    Fuzzyhead Senior Member

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    I am in the uk Justy. I have just had my bloods done on wednesday and it just said lyme serology so think it's just the basic Elisa test.
     
    alkt likes this.
  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    A clinical diagnosis of something like lupus or RA in theory has to include some sort of clinical features like rash or joint swelling etc. So strictly speaking in terms of 'diagnostic criteria' you probably do not have lupus or RA. However, as has been discussed on the forum before diagnostic criteria of this sort are not necessarily very helpful in real life.

    You clearly have an autoimmune process going on - you have antinuclear antibodies, rheumatoid factors and maybe anti-ccp. That process looks to be heading in a direction most like lupus, although the titre of the antinuclear antibody would be important here. Homogeneous staining of Hep2 cells if pretty specific for lupus but only if the titre is above a minimum background (often 1/10-1/20). Chilblains are also more associated with lupus type autoimmunity than RA-type.

    The problem is that there are a lot of people on the borderline of these sorts of illness. There are also a lot of people who have the antibodies who have an increased chance of going on to get an overt illness and also people with the antibodies who remain well. My feeling is that there are two important questions that may be more helpful than 'do I have lupus'. One is whether you are feeling unwell because of an autoimmune process that is roughly of a lupus type. That is very hard to answer but in this situation in my own practice I always thought that it was plausible to think that might be the case. The other question is whether you are likely to develop other features of lupus later. The answer must be yes, because we know this from long term studies, but the chance may be low if nothing more overt has occurred over 14 years.

    I personally suspect that testing for Lyme may be a red herring here. If you have raised IgM and antinuclear antibodies you may find you have raised levels of antibody to all sorts of things as an artefact of an autoimmune process (lupus patients can have antibodies to all sorts of things they have never come across).

    As mentioned by others it would be important to make sure you have seen a rheumatologist with a good grounding in immunology rather than someone who applies diagnostic criteria on a rubber stamp basis. If it is of help you could send me a personal message indicating what city you are near and I may be able to advise on the relevant specialist.

    In simple terms I would say that someone with homogeneous ANA on Hep2 (of significant titre), rheumatoid factor and maybe anti-ccp with inappropriate chilblains (i.e. not due to being frozen) could be expected to very likely have significant fatigue and other general symptoms as part of that type of autoimmunity. I would probably not look for another diagnosis but I am not in charge of your case and what you need is to get a balanced opinion from someone actually looking after you.
     
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  6. Fuzzyhead

    Fuzzyhead Senior Member

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    I have messaged you Jonathon Edwards.
     
  7. justy

    justy Donate Advocate Demonstrate

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    Bearing in mind what Jonathon has said I would suggest going to the London Lupus centre and seeing Professor Graham Hughes. Yes it is private, but if you can get there and afford it then it may well be worth it. I also have a lot fo the same issues as you, alongside pain and joint swelling etc, and abnormal bloods, but STILL a CFS dx despite now not fitting the NICE guidelines for it!! how does that work
     
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  8. Fuzzyhead

    Fuzzyhead Senior Member

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    Did you have a lyme test on the nhs Justy? I am 7 hrs away from london.
     
  9. Sidereal

    Sidereal Senior Member

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    Have you gone there?
     
  10. justy

    justy Donate Advocate Demonstrate

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    No - still dealing with the whole Lyme, MCAS and EDS thing, which I think is probably more likely for me. If I ever revisit the Lupus thing then this is where I would go...

    I had a lot of NHS lupus testing and apart from the ANA everything else Lupus specific was negative. COULD still be sero negative lupus and Graham Hughes is good at spotting these cases, but i'm happy with the Dr I have for now.
     
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  11. Fuzzyhead

    Fuzzyhead Senior Member

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    Me too Justy, the gastroenterologist did loads of bloods for lupus and all were negative apart from the ones i have listed at the top.
     
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  12. daisybell

    daisybell Senior Member

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    I went to the London Lupus Centre a few years ago, and had confirmation of my autoimmune disease (not lupus). The rheumatologists here were reluctant to confirm if I actually had it or not, but the specialist I saw there had no hesitation.
     
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  13. Fuzzyhead

    Fuzzyhead Senior Member

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    What have you been diagnosed with daisybell?
     
  14. daisybell

    daisybell Senior Member

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    Limited scleroderma... Plus I also have Graves' disease, and ME! The limited scleroderma doesn't seem to cause me any problems, so I do wonder if in fact the antibodies are just part of the ME picture for me....
     
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