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Thread: Need help figuring out if i'm 'lupie' or 'loopy'......

  1. #1
    Join Date
    Jul 2010
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    Default Need help figuring out if i'm 'lupie' or 'loopy'......

    Hi everyone i'm a 23 year old female, so about 3months ago I was diagnosed with lupus nephritis by a kidney specialist. 2 days ago I was undiagnosed with lupus(but not with the kidney issues) by a rheumy...I tested negative for Anti- dsDNA Ab for both docs tests. But I tested positive for some other things. Can anybody tell me if I might still have lupus or what...because after getting the initial diagnosis I read up about what symptoms a flare could bring about and I had all except for a typical malar rash(but i get random red,hot clown cheeks and nose tho). Also I have been on meds before I got the rheumy's tests done. And they didn't ask about 'possible symptoms-like a flare'. Just noted that I come from a family with lots of autoimmune issues, and a cousin with lupus nephritis.

    I'm on 40mg of pred now,down from 60. 1500mg of cellcept, izonozoid,vtiamin D, vitamin b, calcium, water retention pills, high blood pressure pills and cholesterol pills. Could this have affected the rheumys results.

    These are my labs, if anyone is interested in helping me trying to figure out what's happening(I hope you are,lol)

    ANF Elisa Profile POSITIVE
    ANF IFA TITRE 0 0-39
    The immunological markers should always be interpreted in
    conjunction with the patient's clinical signs and symptoms.
    The presence of 1 or 2 auto antibodies at low titres are
    probably not clinically significant in the absence of any
    relevant clinical symptoms or signs.
    A multiplex ELISA test is used for the simultaneous
    detection of ant-dsDNA, ANF and ENA's. These test results
    can not be reported in titres.
    The ANF titre is an immuno-fluorescent test and lacks the
    sensitivity of the ELISA test. Anti-dsDNA is also not
    detected by the Immunofluorescent test.
    For this reason it is possible to have a positive ELISA test
    but a negative ANF titre IF test, due to the presence of
    anti-dsDNA or very low concentrations of extractable nuclear

    Anti- dsDNA Ab NEGATIVE
    Anti-DNA confirmatory NEGATIVE

    final question is that the labs said that an ANF titre IF test could be negative due to extractable nuclear antibodies (which i tested positive for), so what does that mean?

    I hope someone can help me..
    Have a good evening folks...sweet's night time on my side of the world
    (I apologize for the looong post, but I really need some clarity)

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    First of all, this statement, "The presence of 1 or 2 auto antibodies at low titres are
    probably not clinically significant in the absence of any
    relevant clinical symptoms or signs" should be read again by your doctors. It basically says that they cannot dismiss or make a diagnosis based solely upon the presence of antibodies and low titers. They must also consider the clinical symptoms or signs. If you do not have any clinical symptoms or signs, then they are inclined to dismiss a diagnosis. However, that is not your DO present with clinical symptoms and/or signs which is supposed to tell a doctor that more investigative and specific tests should be run to determine 1) If you do have an auto-immune issue occurring 2) what type of auto-immune issue it is 3) what type of treatment regimen is needed.

    Far too many doctors look at lab results alone and then dismiss any possibility of having an auto-immune disease (such as lupus). They ignore our symptoms and signs and tell us that it is all in our heads!

    We cannot tell you if you do or do not have Lupus. What we can tell you is to not let ANY doctor ignore your symptoms or signs and INSIST that they continue to test you until they find an answer because it IS NOT IN YOUR HEAD!

    We are here to help you as much as we can and I wish you the very best!

    Peace and Blessings
    Look For The Good and Praise It!

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