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  • #301911
    tainabell
    Participant

    Hi all,

    So I just got my blood tests from a recent doc visit (a rheumatologist who I thought was a LLMD, that's another story, though)…and they are sort of weird. 

    I tested negative on the ELISA screen, so didn't get a proper WB like I thought I would.  I also tested negative for all the co-infections, which I guess is good.  But I got some weird results that I never got before and I was wondering if anyone here could tell me what they might mean.  The rheum is on vacation so he hasn't given me the whole doctor/patient chat. 

    Okay, so I had a positive ANACHOICE Screen.  I know what the ANA is, but I don't understand the “choice” part of it.  The ANA Titer came back negative. 

    Also, my results for Sjogren's were a 1.1 and technically positive…as over 1.0 is considered positive.  What do we all think about that?  Should I be worried about Sjogren's?

    Finally, I tested very positive for Parvovirus B19, (my tests were 6.5, should be .89 tops)  I googled Parvo and it said basically that its FIFTH'S disease?  I thought that was like a ten day illness.  I've been sick for 3 years.  Anyone have any idea what this could be?   Thanks! 

    #326651
    Maz
    Keymaster

    [user=854]tainabell[/user] wrote:

    I tested negative on the ELISA screen, so didn't get a proper WB like I thought I would.  

    Okay, so I had a positive ANACHOICE Screen.  I know what the ANA is, but I don't understand the “choice” part of it.  The ANA Titer came back negative. 

    Also, my results for Sjogren's were a 1.1 and technically positive…as over 1.0 is considered positive.  What do we all think about that?  Should I be worried about Sjogren's?

    Finally, I tested very positive for Parvovirus B19, (my tests were 6.5, should be .89 tops)  I googled Parvo and it said basically that its FIFTH'S disease?  I thought that was like a ten day illness.  I've been sick for 3 years.  Anyone have any idea what this could be?

    Hi Jen,

    I'm not an expert on ANA by any means, but I'm a little confused by what you wrote above….your ANACHOICE screen is positive, but your ANA titer came back negative? Perhaps someone can chime in here if they understand this.

    In the meantime, on the main website there is a description of the different ANA tests and how they break down amongst the differing AI diseases…basically what the different patternings mean:

    https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Appendix-7638

    You have likely seen this already, so this may be moot, but just thought to add it in case you see something on your tests that is a match.

    As I say, I'm no expert in ANA, but my guess it that the ANACHOICE test might be a generalized test to look for a possible generic elevation …in other words, a reason to test further. As you'll see from the above link, ANA can be elevated in any number of rheumatic diseases, even Sjogren's, so your low Sjogren's test might be elevating the ANA.

    PERCENTAGE OF PRESENCE OF ANA IN SOME RHEUMATIC DISEASES

    Systemic Lupus Erythematosus

    95-100%

    Diffuse Scleroderma

    75-80%

    Sjogren's Syndrome

    40-75%

    Rheumatoid Arthritis

    25-60%

    Juvenile RA

    15-30%

    Dermatomyositis, Polymyositis

    10-30%

    Healthy Adults

    ~5%

     

    It's the different patterns that give a more clear picture of diagnosis.

    Here is a link to a website discussing ANA patterns and the first post under this discussion asks about the ANACHOICE screen in relation to a speckled pattern.

    http://autoimmunedisease.suite101.com/article.cfm/anatestpatterns

    It's a little concerning that you got your bloodwork results before the rheumy could share the interpretation with you. No wonder you're concerned. Try not to anticipate what any of this means, though, until you have a chance to speak with him (even if you're not going back to him). If your titer came back negative, it probably means you're negative.

    Most people get exposed to Fifth's disease in childhood. It's normally a mild disease in kids, causing a slightly elevated temp, red cheeks (called, “slapped cheek”) and a lacey, reticular rash that comes and goes on the torso and extremities. This rash is especially noticeable after bathtime or whenever one is hot. In adults, however, it can cause very severe reactive infectious arthritis with joint pain and swelling, as I found out when I got in in the early 30s. This lasted 3 months and I had to come down the stairs on my behind it was so painful. Some people get it worse than others, as adults, so there may be a genetic predisposition of some sort. Once you get it, though, you never get it again. That's why it's best to get it when you're small, when most of the time it's passed off as a cold or flu bug.

    As with any infections one gets in life, you always carry a bit of it around with you, you develop antibodies and your immune system keeps it in check. So, once you get EBV, you probably will always test positive for exposure to it. I would think if the titer is very high (whatever that cut-off might be), then it's classed as an active infection.

    One thing that is probably salient to all these infections…Lyme and coinfections, mycoplasma, various viruses and funguses, etc, is that they linger in the body for the duration of our lifetime. We can get the titers down, but they morph into different forms and hang out in these bio-films, working synergistically with other pathogens and often providing some protection to other organisms, as is being discovered with strep (see second article below).

    Here are a couple articles explaining this:

    http://www.washingtonpost.com/wp-dyn/content/article/2009/03/08/AR2009030801778.html

     

    http://www.sciencedaily.com/videos/2006/1007-sick_of_strep_throat.htm

     

    So, we're not just talking about one infection, but these slimey bio-film communities that afford protection to our individual pathogen loads and to eachother (the different pathogens). One infection might trigger or bad apple that tips the proverbial apple cart in a rheumatic or other autoimmune disease, but it's probably a whole mess of underlying organisms in their various pleomorphic forms that are causing persistence.

     

    The standard ELISA for Lyme, as you know is pretty crappy. In some respects, it's worth having it done in the very beginning, because if you're one of the very lucky ones that tests positive, then this helps enormously. Trouble is, if the ELISA is positive and they then go to the next step, which is a Western Blot to confirm and this test is negative, then they assume it's a false positive, anyway. To meet CDC criteria, you have to test positive on both ELISA and Western Blot…and the irony of this is that you still get docs crying, “False positive!” Some people just don't test positive on Lyme tests…just as Weintraub described in “Cure Unknown,” which I'm pretty sure you've already read (so I know I'm talking to the already converted, but it may be helpful to someone else). Plain truth…no one test is definitive for Lyme. There are more sensitive testing methods, but even these shouldn't exclude a diagnosis of Lyme, which is known to be a stealth pathogen.

     

    Perhaps someone with Sjogren's will help you with the slightly elevated reading there. Doesn't look too elevated to me, but I don't know much about that reading either. 

     

    Sorry this got a bit off-topic, Jen…just some thoughts that came to mind to hopefully keep you buoyed till you speak with the rheumy who did these tests for you. 😉

     

    Peace, Maz

     

    #326652
    JOJO19551
    Participant

    As far as the ANAchoice, this is a term for ordering an ANA and it is positive the lab does further testing, the first step being dsDNA, Sm AB, Sm/RNP AB, RNP AB and Chromatin AB.  If any of these are POSITIVE, it stops here and the results are reported.  If all are negative, they go on to the next step, being a total of 3 steps after the initial ANA.  So, if your ANA is negative, they stop with the ANA.  Hope this helps, JoAnn

    #326653
    tainabell
    Participant

    Thanks for this detailed response, Maz.  My brain is basically broken from trying to interpret all this stuff.  I tend to be sort of obsessive, and you're so right, that it probably was a bad idea to get the tests before I talked to the rhuematologist about it.

    The reason I wanted to get them is cause I'm going back to Dr. Y (my original AP doc) tomorrow and wanted to be able to tell her if I tested positive for co-infections, etc.  Maybe she can explain these tests to me a little better. 

    I think you're right about the ANA thing. I've never seen the “choice” thing before, but it seems to be a screener.  What disturbs me is that I've never had any trace of anything ANA-related before.  Always tested neg for Sjogren's as well.  So this is concerning.

    All the sx of Parvo are me to a tee, and in some cases, it describes my case more than Lyme or anything like that.  Only problem is that instead of a few weeks or a few months, it seems like I've been suffering for a few years.  Rash on the trunk and limbs, painful and swollen joints, it all sounds likem.

    I found this.  http://www.ncbi.nlm.nih.gov/pubmed/18653379  Patient who had Parvo midiagnosed with Lyme.  Grrrr!  I feel like I'm wandering around in the dark here. 

    Also this, http://www.arupconsult.com/Topics/InfectiousDz/Viruses/Parvo.html

    Interesting takeaways from this… “A migratory polyarthropathy may occur in up to 50% of adults, particularly females” and this “

    [*]Associated with the onset of autoimmune disorders [/*]

    • System lupus erythematosus (SLE) [/*:kfcd8lfe]
    • Rheumatoid arthritis (RA) [/*:kfcd8lfe]
    • Systemic vasculitides  [/*:kfcd8lfe]
    • Autoimmune thrombocytopenia [/*:kfcd8lfe]
    • Hemolytic anemia 

    [/*]
    Interesting stuff.  I hate being in the dark, though.  Looking forward to seeing Dr. Y, maybe she can help me shed some light on this stuff.

     

    #326654
    Maz
    Keymaster

    Thanks for clarifying the ANACHOICE test, Jo Ann! 😀 Sounds like Jen is okay there then…just a little bit elevated on Sjogren's which I'm guessing is borderline low, Jen. Would still be good if someone with Sjogren's could give an overview of reference ranges here for you.

    Jen, when I got EBV it was very similar to RA for sure, but it didn't persist past 3 months and gradually improved. The rash was not hive-like at all….not itchy or irritating in any way…just a flat, confluent, lacy-looking rash. The recurrent hives I have heard about with Lyme disease, though. The EBV rash (slapped cheek) on the face does appear somewhat similar to the Lupus rash.

    I think there is a lot of crossover with these infections and, as more research becomes available on these bio-film communities, they all seem to work synergistically with one another. Viruses are very difficult to treat, because antibiotics don't touch them. Anti-virals might help (natural or prescription), but they just have to work their own way out of the body usually and always hang around to some degree (as chicken pox virus will do, lsometimes later coming out as shingles).

    Peace, Maz

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