The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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positive ANA

Discussion in 'Immunological' started by Omar88, Jun 5, 2017.

  1. Omar88

    Omar88 Senior Member

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    today i was in the hospital i have some weird symptoms ,, after a cut on my leg like burning and pain in the place after 8 days even though the cut is small , since two days i start having cold feeling , diarrhea , urine burning , muscle spasm in some places , pain in neck and jaw , chest pain and feeling that i lost breath for a second with shortness when i walk and main bronchitis weird pain !! i went to the ER my CBC , LFT , RFT are fine still my urine and stool culture and analysis are not done !!

    i cant take tetanus booster, last time i was going to die and i lived in hell for 2 months between staying in hospital or home with daily vising ER from the booster reaction !! the symptoms are weird and doctor told me that vaccine work for 10 years as for 3 years and 8 months its should be still working for me and my symptoms are not specific so he want to wait before he start TIG and heavy antibiotics course :(

    any thoughts ?

    doctor asked me if have LUPUS and i answered no but he showed me that my ANA 2 weeks ago came back 1:640 positive !!! after 2nd year my ANA started to positive and now the titre is raising up ,, i think that why 9 days ago i felt fine 95% taking prednisone for CT scan as its immune suppression treatment and cortisone !!

    did any one had a change in his ANA years after the illness ?

     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    Yes, mine was negative from 2010 to 2016 and now it is positive at 1:160 speckled pattern. But in my case I am not surprised b/c I now have so many autoantibodies.
     
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  3. Omar88

    Omar88 Senior Member

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  4. Gingergrrl

    Gingergrrl Senior Member

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    I had ten months of IVIG but at the moment my insurance is denying treatment and we are appealing.
     
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  5. Ambrosia_angel

    Ambrosia_angel Senior Member

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    It definitely happens. Some people have negative ANA lupus throughout the whole duration of their illness so it's possible!

    Although it's not nice, in a way it's great that your ANA is positive because now your drs will be more proactive rather than reactive when it comes to treating you.

    One thing I will say is that you may have ME (if that's what you've been diagnosed with) and now you also have lupus. They can both go coexist. So it might not be the same illness.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    A positive ANA can mean many things and does not necessarily mean that someone has lupus (if that is what you meant)?
     
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  7. Omar88

    Omar88 Senior Member

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    doctors usually dont use this way of treatment !

    was is it helpful ? or the immune suppression treatment if you did try where better ?
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    I think many doctors (in the U.S. at least) would really like the option to use IVIG but it is so challenging to get it approved by insurance (especially high dose for autoimmunity) that they do not want to bother. It took me and my doctor about four months to get it approved and then I did it for ten months and now back in limbo again.

    It was incredibly helpful and my next IVIG cycle would have been in three days and am quite afraid what will happen as the autoantibodies return if I cannot get more. I did not view it as immune suppression vs. immune modulation and autoantibody suppression. But no one really understands the exact mechanism of high dose IVIG for autoimmunity.

    I re-read your first post and was very curious about this part. Do you have shortness of breath only when you stand and walk or all of the time? This was my absolute #1 worst symptom (secondary only to anaphylaxis from MCAS in 2015 which is now resolved) and it has greatly improved from the IVIG.

    So your ANA (1:640) is much higher than mine (1:160) and I was curious if you were tested for the Lupus markers or other autoantibodies? Most doctors only test for the most common autoantibodies and on those tests, I am positive only for the two Hashimoto's autoantibodies. But when I was tested for paraneoplastic autoantibodies, is how I learned of the more rare ones that ultimately led to the IVIG. I hope this helps.
     
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  9. kangaSue

    kangaSue Senior Member

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    Approximately 20% of the normal population will have a positive ANA test. Positive tests can also also show in conditions such as thyroid disease and some liver conditions as well as in autoimmune diseases.

    I'm not sure why but here in Australia, they will run a GAD65 antibody test at the same time as doing an ANA panel. A common next step in having a positive ANA panel is to run an ENA (Extractable Nuclear Antibody) panel for Lupus or any of the other connective tissue disorders;
    https://labtestsonline.org/understanding/analytes/ena-panel/tab/test/
     
  10. Ambrosia_angel

    Ambrosia_angel Senior Member

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    I mention lupus because the OP mentioned lupus so I assume that the OPs dr must have enough info that makes him assume it's lupus.
     
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  11. knackers323

    knackers323 Senior Member

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    Ive had an ana as high as 640 during my illness also. Last time it was checked it was negative.

    Few weeks ago I had a cortisone injection and felt much better for about week
     
  12. Omar88

    Omar88 Senior Member

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    i get shortness of breathing when i talk and walk

    today i talked to a doctor he told me i should run ENA panel in my next appointment but he doesnt think i have Lupus , he reviewed my ANA results over years and he told me in the first 2 years it was negative and 3 rd and 4th it was positive at 160 and now after 5 years and 8 months its 640 so he think my over active immune reaction to what ever i have is causing that ..
     
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  13. Webdog

    Webdog Senior Member

    Yep. My ANA gone from negative to positive to negative to positive to negative (now) over the past 8 years. But the numbers are never abnormal enough to get a rheumatologist to do anything other than run a few more tests and shrug.

    I don't have lupus or any other identifiable immune disorder, but autoimmune stuff runs in my family (parent with Type 1 diabetes, sibiling with T-Cell (non-hodgkin) lymphoma.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    That is so interesting and I know you said you don't know why this is the policy in Australia but I am so curious why they run a GAD65 autoantibody test when they do an ANA panel?! There must be some significance to choosing that specific autoantibody and am curious since it is one of the ones that I consistently test positive for from three different labs. We think in my case it is an autoimmune marker related to both my Dysautonomia and Hashimoto's (since I do not have diabetes or SPS).

    @Omar, have you had any pulmonary function testing (PFT's) or spirometry testing done and if so, are you able to pass the tests? Do you know what your forced vital capacity (FVC) score is? Prior to IVIG, I was unable to pass even the most basic of these tests and now I can. In addition, I would sometimes get out of breath talking and now can talk on phone for hours and sing with music again. My shortness of breath with walking more than about 20-25 steps, however, remains a problem for me.

    The rheumatologist that I saw in early 2016 completely dismissed my ANA of 1:160 even though I had several autoantibodies on tests. At that time I had four and now I have eleven. He said I was the first patient in his entire career who tested positive for the calcium channel autoantibody and he just did not know what it meant or what to do. He was a nice man but ultimately unable to provide any help. But I can't believe that there is no connection between a positive ANA and eleven autoantibodies (in my case). This seems too far-fetched and my main doctor believes they are connected and relevant.
     
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  15. kangaSue

    kangaSue Senior Member

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    @Gingergrrl GAD65 Ab is a common marker found in a number of autoimmune conditions including Diabetes so I guess with the increasing occurence of Diabetes in the population, it is just an obvious one to run. It's found in Hashimoto thyroiditis too so maybe that's part of where yours comes from.
    http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=G&unit_code=84221

    I don't know if you have looked into baclofen before. Glutamic acid decarboxylase (GAD) is a neuronal enzyme involved in the synthesis of the neurotransmitter gamma-aminobutyric acid (GABA) and I assume GAD65 Ab would inhibit this process so maybe baclofen as a GABA2 agonist might combat breathlessness too. I am just trying it myself to see if it helps with my GI dysmotility, no great shakes at this point.
    http://journal.frontiersin.org/article/10.3389/fphar.2010.00124/full
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    That makes sense to test for it since it is a common diabetes marker (which we have ruled out in my case). We suspect it is b/c of the Hashimoto's. I had minor symptoms of SPS prior to doing IVIG which are gone now (I hope permanently).

    I have never tried Baclofen, but did look into it once, and learned that it is a calcium channel blocker which I am not supposed to take b/c of my other autoantibody so I left it alone.
     
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  17. kangaSue

    kangaSue Senior Member

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    Ohh, I didn't realize it was a calcium channel blocker. Didn't do my homework well on that one and a quick look says it affects voltage gated calcium channels so that's not what I need either and one good reason to explain why I'm not getting on well with it too. I was just debating whether or not to take another one or just quit it, it's an easy call now. Thanks for the heads up.
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    KS, No problem and am thrilled I could be of help with this after all of the times you have helped me!
     
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  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear Omar,
    I would suggest that you need a test for double stranded DNA antibodies as well as ENA. Various methods are used for ds-DNA tests, including Hep-2 cell assays, crithidia assays and non cell-based assays. All that matters is that the assay looks for ds-DNA antibody.

    An ANA titre of 1:640 is unusual other than in lupus and lupus may remain silent for long periods so I would consider that an important possibility. Anti-ds-Dna antibodies are more or less completely specific for lupus. ENA antibodies are mostly used to diagnose lupus-like syndromes.

    Shortness of breath is a common symptom of lupus and lupus like illnesses and should be checked out with formal respiratory function tests. In lupus a restrictive defect is usual, with or without transfer factor abnormalities.

    An ana cannot be put down to ME/CFS per se or to an over active immune reaction - that does not happen; it is a specific immune dysregulation. Occasionally no cause is found, but not often.
     
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  20. Omar88

    Omar88 Senior Member

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    Dear Jonathan

    i will chick all those after this hard period i am in !! am daily in the ER room because of suspected tetanus case and doctors are not sure of what i have because of the big range of symptoms i always have and it might be either this or that so they are waiting m y jaw to close to be sure and start treating either than that they keep running routine tests to check the body function ..

    i got jaw pain and muscle spasm but i always had the muscle spasm since a year and my jaw is not close , so am on pain killers surrounded with patients am praying that no one of them have MERS virus ..

    going back to the main story sir ,, i never had immunology troubles before and my illness started after some kind of heavy viral infection and my ANA was always positive during 2 years so i dont think that i started with autoimmune illness but now i got to say taking some cortisone for my CT scan was one best thing i took since 2-3 years and it have immunosuppressive effect !!

    regards
     
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