Positive ANA and tested positive for lyme

Discussion in 'Fibromyalgia Main Forum' started by ginlyn07, May 28, 2009.

  1. ginlyn07

    ginlyn07 New Member

    My doctors office called today with my blood work and said they were a little concered because my ANA was positive and my lyme test came back positive too. So they are sending me to a Rheumy. I have been to plenty, but new insurance and new doctors again. The nurse said that if the lyme tested positive it could be a sign of lupus or RA, since my ANA was positive too. I just would like to know what to ask the new Dr. I didn't think I would test positive for lyme, I heard of others on the board with it. I am relieved they found something, but also a little worried. For the last month I had been spitting up pink phlem and my left ankle keeps swelling and my body has been flaring bad. I am just wondering if I do have Lupus. Thanks for reading. Ginny
  2. Nanie46

    Nanie46 Moderator


    I also have lyme ("fibromyalgia" for 21 years) and have a positive ANA.

    I see a Lyme literate MD (LLMD). He is very knowledgable. He says that he has alot of patients with a positive ANA because it is just an indicator of an inflammatory process. It does not mean you have lupus.

    He said that with proper lyme treatment, the ANA would most likely correct itself.

    With that said, Rheumatologists do not understand lyme, along with 99% of Dr's, so he will not know this information. He will only look at disorders like lupus and other autoimmune diseases.

    I strongly urge you to find a good LLMD asap. You can do that by going to lymenet.org....click on flash discussion....sign up for free like you did here.....click on the "Seeking a Doctor" board and create a new post something like this...."Need a LLMD in Maryland"...or whatever state you are in.

    Most LLMD's do not take insurance. They are persecuted by the Infectious Disease Society of America and insurance co's who do not believe in (or want to pay for) long term combination antibiotic treatment.

    Often though, you can submit the bills to insurance yourself and see what happens.

    A good LLMD is invaluable. They address not only lyme, but coinfections such as babesia, bartonella, ehrlichia, etc that many people with lyme also have.

    They also address adrenal issues, hormones, etc which is necessary.

    An infectious disease Dr will only provide you with a few weeks of antiobiotic treatment and then will proclaim that you are cured even when your symptoms remain. He will then tell you that you have post lyme syndrome and can't help you any further.

    Do not waste your time with infectious disease Dr's. They follow IDSA guidelines for lyme treatment which do not help people at all who have chronic lyme.

    Find a LLMD who follows the ILADS guidelines.

    While on lymenet.org also go the the Medical Questions board and post some questions. There are many intelligent people there who will help you. You can find me there as Dekrator48.

    You can leave posts for me on the lyme board anytime.

    Here is some important information you should read......





    Lyme is a very complex disease. It is the most complex bacteria identified to date. It can morph into forms that antibiotics can't reach. It hides deep within the brain, CNS, muscles, tendons, joints, organs etc. It requires long term combination antibiotic treatment, lots of supplements, and treating the whole body.

    Let me know if I can help you further.
  3. ginlyn07

    ginlyn07 New Member

    Thanks for all the info, it's a lot to take in. Do you think I really have lyme??? I think I am in shock still. I know my body all these years has been miserable, I just want to feel better. After reading your post, not even sure I should see the rheumy and go to the other kind of dr you suggested, but money is super tight too. Again, thanks for your help, Ginny
  4. gapsych

    gapsych New Member

    I would stay away from an LLMD for now since the doctor suspects Lupus and if that is causing the positive lyme test then you would be getting a different treatment by seeing an LLMD.

    I think there are several people on the board who have tested positive for the ANA. In fact there is a lupus board where you might want to ask some questions.

    You need to see a doctor who knows the whole picture and how a positive ANA can influence a lyme test. If you go to an LLMD you will most definitely be diagnosed with Lyme and may be missing something that is more serious and getting the wrong treatment. You might want your rheumy to consult with an infectious disease doctor amd they can collaborate.

    Then if nothing is found you might want to think about Lyme but that is a decision between you and your doctor.

    Just wanted to give you the other side of the picture.

    What a shock. I wish you the best. Keep us informed.

    Take care.


    ETA I know that Rafiki has tested positive for ANA but does not have lupus.
    [This Message was Edited on 05/28/2009]
  5. kat0465

    kat0465 New Member

    i have had Positive anas for about 15 years now, but no Lupus.or any other connective tissue disorder.
    Nanie46 is right, Lyme can make you have a Positive ana.
    for years i worried i had Lupus, to ease my Mind my cfs dr, did some extensive Bloodwork involving my dna to absolutely rule out Lupus, she gave me the all clear on that
    so now i am waiting on my Igenex Lyme test.

    Don't let them PooPoo the idea of Lyme!!!
    Just my opinion that has had Pos anas for over a decade now.

    Research the heck out of it& ask your Doc to do some more in depth testing for Lupus... And Lyme[This Message was Edited on 05/28/2009]
  6. Nanie46

    Nanie46 Moderator

    Hi again,

    It is important to know that Lyme is a clinical diagnosis...based on history and symptoms. It can be supported by labwork....but lyme is never, never ruled out by just a lab test.....although 99% of Dr's do that all the time, leaving many people undiagnosed.

    It is very common for the Lyme bacteria to cause fibromyalgia syndromes and chronic fatigue syndromes. It can also cause symptoms that look exactly like lupus, MS, RA, Parkinson's and other illnesses.

    I would see a LLMD or it is likely that you will never recieve proper treatment and your symptoms will remain.

    If a good LLMD thinks you do not have lyme, they will tell you that. They do a good assessment and further labs.

    Just curious....what lyme test did you have??? A lyme screen/IFA/titer?? or a western blot...through which lab??

    Igenex lab in CA, www.igenex.com is the very best place to have a western blot IgG and IgM.
    They have superior testing methods and are one of the only labs who test for all bands, which is absolutely necessary.

    Another must read......


    It is also very important for you to know that a lyme patient should never, never take/use steroids of any kind. They will supress your immune system and the lyme bacteria will run rampant in your body.

    I urge you to post on lymenet.org.

    Good luck.
  7. ginlyn07

    ginlyn07 New Member

    I just got off a dose pack of steriods and can tell I am going to crash again. I so wish there were tests that were conclusive.

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