NE1 W/ Positive ANA?

Discussion in 'Fibromyalgia Main Forum' started by fight4acure, Aug 10, 2010.

  1. fight4acure

    fight4acure Member

    I just received news that I have a positive ANA test and have to meet with a Rheumy to find out the results. I looked it up online and figured the results out with the help of the nurse & the test data.

    NEway, I'm not a happy camper right now. I've been begging for inflammation blood tests for the past 2 years and my family doc kept thinking it was a waste of money, so I actually begged my ortho surgeon, that I'm seeing for the cartilage damage in my knee (also ignored by my family doc for over a year), to give me an inflammation test for my body/blood, because something is messed up when I get a big flare in my body the first 24 hours after a cortisone shot in my partially damaged knee, and then after the 24 hours my body felt better than it has in a long time, even better than it feels when I take antibiotics. So, I know my body has tons of inflammation. Sure enough I was right. Now to wait to get in to see a doc.

    Please share your story or whatever...

    Thanks,
    Fight4acure :)
  2. greatgran

    greatgran Member

    I have had a high positive ANA for years also a high elevated C-reactive protein. the CRP is really what measures inflammation.. I would say if you have a messed up knee that is why you have an elevated ANA.. I was tested for Lupus etc.. all normal.. some people have a elevated ANA and no reason.

    I wouldn't worry, an elevated ANA is not that uncommon but get it checked out..

    Good luck,
    gg
  3. fight4acure

    fight4acure Member

    Thanks Hon for responding! My knee was damaged last year and they said minor cartilage damage, but I studied FMS & cortisone corellation online & FMS pain doesn't go away with a cortisone shot, but it did for a whole week after the shot. Now that the shot is wearing off the FMS pain is getting severe again, like it was before the shot and the first 24 hours after the shot, and then wham, relief for over a week!!! It's a bummer for sure to get the pain back after the cortisone shot is wearing off. It could be the knee, but Im thinking its not because of how my body reacted... does that make sense? I've also had 2 high CK levels in the last 7 years.

    Hugs,
    Fight :)
    [This Message was Edited on 08/11/2010]
  4. Nanie46

    Nanie46 Moderator

    Hi,

    I also have a positive ANA.

    My FM symptoms are caused by a chronic borrelia burgdorferi infection.

    My LLMD says that with treatment, most of his patient's ANA returns to normal.
  5. fight4acure

    fight4acure Member

    From Lyme's disease? That's what I was dx'd with when I got dx'd with FMS.

    Hmm. All I know is my body has been flaring up back to normal with constant severe pains after the shot wore off, I think its been one or two weeks when I got the shot for my knee. I can't keep track anymore when I did this or that.

    Who knows, I guess I'll take some advice and not worry about it too much as its gonna drive me insane. But when I told my reg doc, they gave me their direct extention to call the nurse, bypassing others, and they want me in to see him ASAP, instead of waiting for appointment on the 19th. I guess I meet so many Lupus criterion, but we'll see what it is. My cousin has lupus but we don't know what side of the family.

    I'm so glad you two responded as I need this support, thank you! Poor little Fight is scared. The level is 1:80. It's a little high, but I've never had a positive ANA test before.

    Hugs
    Fight :)
    [This Message was Edited on 08/11/2010]
  6. fight4acure

    fight4acure Member

    my list is as long. Ive had UTIs continually at some points. I don't even know where to start.

    All I know is that this is driving me crazy. I get to see my reg doc on the 19th, and then a Rheumy on the 1st of Sept.

    Yep, lots of folks have positive ANA, but a lot of folks don't have a lot of pain as the pain that comes with FMS or Lupus, whichever. All I know right now is my body is screaming in pain today, it's at level 6 but its all over my body.

    Who knows, maybe its nothing.

    Hugs
    Fight :)
  7. Nanie46

    Nanie46 Moderator

    Hi,

    Are you saying you have already been diagnosed with Lyme disease?

    If so, steroids are the worst thing for Lyme.

    Steroids supress the immune system and that allows the infection to spread.....non-LLMD's don't understand this though.

    The ANA is just an inflammatory marker. Many lyme patients have a pos ANA.

    Many lyme patients have first been diagnosed with FM, Lupus, and many other diseases before discovering that the CAUSE of their illness is the bacterial infection Borrelia burgdorferi and related coinfections.

    Have you ever checked out lymenet.org? click on flash discussion....sign up for free...click on Medical Questions board....read posts and post your questions.

    They also have other boards such as "Seeking a Doctor" to find a LLMD, and General Support.

    It is possible that all your symptoms are due to tick borne infections.

    If I were you I would seek the help of a LLMD.

    Please read the following info:


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf



    http://www.lymepa.org/Basics2007v1.2Rev.pdf



    http://www.ilads.org/lyme_disease/about_lyme.html



    http://www.lymenews.org/d_CALDA_TwoStandards_7_2006.pdf



    Be sure to check out pages 51-52 of the following link which describes how Lyme can mimic Lupus..



    http://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf



    The FM I had for 22 years was really a lyme symptom. Everything has a CAUSE..you just have to find it.
  8. fight4acure

    fight4acure Member

    Thanks Hon! I'll read it later when my eyes are dry. I'm getting more and more upset sitting here at the computer, so I have to walk away for a while... just not the long while I was gone from this loving, supportive board that I miss so much. Thanks for the info! WI has the Clinic that is a top clinic for Lyme disease, yet they still don't know much about Lyme's. It's in Marshfield I think, if I can remember right with this fog, crying, aching head. Marshfield, WI, called marshfield Clinic. I've been meaning to get there, but doubt my insurance will pay for anything and I have worked for one and a half years now. I gotta go as this is getting to me.

    Hugs
    Fight :)
  9. Nanie46

    Nanie46 Moderator

    It is likely that the clinic follows IDSA guidelines for short term lyme treatment only and then tells you that remaining symptoms are not due to lyme or are post-lyme syndrome.

    You need to read the ILADS info and find a LLMD who follows ILADS guidelines.

    Sorry you are upset right now.

    Maybe you have found out something important today, though.
  10. fight4acure

    fight4acure Member

    A short note before I get away from the computer because I am tired of crying over stuff that upsets me because I have to wait to see a doctor, and its back to more games again with the doctors. I don't want to see another doctor for the rest of my life.

    Anyway, I'm a little emotional right now, which I get when I get scared, but I'll try to answer your questions.

    I have numbness on the left side of my face, and that travels to my left hand, part of the fingers, but leaving the ring and pinky finger out. That happens sometimes when I get upset, and other times if I move my shoulder just right when active.

    I had swollen hands & wrists when I was first dx with FMS and then a few months later with Lyme disease. Antibiotics helped it temporarily, but were taken two&aHalf - three months after the swelling and pain.

    I have polyneuropathy, FMS, CFS, Lyme's (which some docs question), Migraines, severe pain in joints, muscles & tendons, etc., many UTI's, lots of lung infections such as walking pneumonia and brochitis.

    I am going in to see a Rheumy on the 1st, and my reg doc on the 19th. I'll ask for those tests you wrote.

    Oh, my neck... it has osteo-something, can't remember. Bone is thinning out.

    & now my knees, but those happened from falling last year, and they didn't get better after a year, so I finally went in to see an Otho surg. Got to get scoped out, but it's minor, but with all that's going on, I had such severe knee pain, luckily my muscles are improving after PT.

    I don't have swelling, except for my hands when they did in 98. & I do have night sweats, fatigue, and severe to moderate pains.

    I have to take a lot of meds to look normal, but I'll never feel normal.

    Hugs

    Fight :)
  11. Tizz

    Tizz New Member

    ...but just barely. That's common with fibro, according to what I've read, but the ANA is usually just BARELY elevated with fibro.

    Mine sometimes just barely dips BELOW normal on the ANA, but when it does it is at the very high end of normal.

    A good doc takes those kinds of things into consideration...

    Tizz
    [This Message was Edited on 08/11/2010]
  12. fight4acure

    fight4acure Member

    Found out on Monday. This has been built up inside and I was about to blow! My family is not good at listening about my health problems. When something serious happens, they change the subject a lot, but if it's something I'm trying to explain to them, they think I'm just milking it at times, trying to get attention. I gave up telling them much. That's why I come here when I need more support & when I get overwhelmed and scared.

    If only I knew the docs that worked at Marshfield. I wish they'd get better tests for all of these illnesses, so there's less fear being raised amongst us all. Then they wouldn't accuse us of being hypo's.

    Gotta go... I'm going to go eat, rest and then go swimming. Yes, I am very active even with all of my pains, but I'm also taking meds, and using every bit of pain relief advice, trying to act normal. Swim therapy is the best for me, as there's not much weight on my knees.

    Okay, I'm off the computer now. Be back later. & thanks you two! Its helping to get this stress out of my jumbled up mind.

    Hugs
    Fight :)
  13. Nanie46

    Nanie46 Moderator

    Hi,

    Nightsweats can be a symptom of a Babesia infection (common coinfection with lyme patients).

    Babesia info found on pages 22, 23, 24, 26, 27 of this link...


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

  14. blueeyedgrl73

    blueeyedgrl73 New Member

    Sorry you are going through this! An ANA is not an inflammation marker at all. The inflammation tests are sedimentation rate and C-reactive protein. ANA is a test that looks to see if your body is making antinuclear antibodies....usually in lupus...but also people with RA, Sjogren's, etc can have a positive ANA. Elderly people can have a positive ANA without any disease. The higher the ANA the more likely there is an autoimmune process going on. Since you have other symptoms it is likely there is something going on....more than CFS or fibro... I hope you get some answers soon! I had fibro symptoms for two years before my joints started hurting and my sed rate and CRP became elevated and I was diagnosed with seronegative RA. I hope you get some answers soon!
  15. fight4acure

    fight4acure Member

    Almost every other time I get checked for a UTI, whether positive or negative, I have been marked above normal range when urine was checked for protein, showing it is present.

    WBC - I've had that be low a few times.

    I've got an appointment on the 1st, so I'll see what happens with that. My reg doc may check for some things as well on the 18th or 19th.

    I forgot to tell you a few things. Scoliosis in mid back, Osteoporosis in neck, Myofacial pain Syndrome, much hair falling out (but luckily I'm blonde so I have more of it), vericose veins, coughing up rubbery balls of flem (mispelled), photosensitivity & tons of floaters in my eye since I became ill, restless leg crap & what's the other one called where the whole body jumps around? Anxiety and depression (esp when the docs don't listen to me tell my symptoms, or don't take them seriously), I went to a psych and she told me I should accept what I have and stop looking into my different symptoms because minus FMS I'm normal... boy was she wrong, my knee cartilage was torn, my ANA is up, and my reg doc's nurse had some panic to have me call her back at an extension ASAP, after I left a message about my ANA test that another doc did. I know something else is going on because I have symptoms that a majority of those with FMS do not have, listed on the other post and now this one. I've forgotten a handful of them, but I've got to rush the reply as I have a PT appointment.

    Hugs
    Fight :)
  16. fight4acure

    fight4acure Member

    Its always good to look into the tests that are high or low, even if they just barely hit the normal range. I've had some tests like diabetes that were a little above 100, but those aren't significant enough according to my doc, but that is different than other tests, as people with diabetes will have extreme measures. I'm glad you have an intelligent and caring doctor. Thanks for responding.

    Hugs

    Fight :)
  17. fight4acure

    fight4acure Member

    This weekend I'll take a look at all of the information you provided. Thank you so much!

    Hugs

    Fight :)
  18. fight4acure

    fight4acure Member

    Oh, lol... Thank you for educating me. I'm just learning as much as I can so that when I get to a Rheumatologist, I can know what to expect. I've had CK high a few times, and that's the inflammation test, correct? Okay, thank you! My reg doc's nurse (not the doc who I had order the test which was my ortho surgeon) freaked out yesterday after receiving my message and left me a message to call her ASAP at her extention. That scared me a bit, her being scared, and then I told her I have an appt with a Rheumatologist.

    Side note: My psych doc told me that I should accept what I have and stop looking for answers. I gave her the evil eye and then the appointment was over. Why do ignorant people speak? Why do they breath our air, lol?

    Hugs

    Fight :)
  19. greatgran

    greatgran Member

    1:80 is not very high at all mine was 6:40 I don't think you have anything to worry about .. Still think its from the knee...

    gg
  20. blueeyedgrl73

    blueeyedgrl73 New Member

    Hey Fight...your psych needs to take a hike ...and yes I rhymed :D lol! There are people on lupus forums who have negative ANAs but still have full-blown lupus. So, when someone says yours isn't elevated that much and no need to worry then you might reconsider that. Since you have alot of symptoms suggestive of lupus you might go to some of these forums and speak with people there who are actually living with it. Butterflies among us is a great site and also FB has several pages. I agree with puddleglum about the lupus foundation of america site too. Mixed connective tissue disorder is another autoimmune condition where it isn't fully lupus but you can have an elevated ANA with muscle/joint pain, etc. I hope you get some answers soon....please keep us updated! :)