high SSB/LA IGG=sjorgens or lupus?

Discussion in 'Fibromyalgia Main Forum' started by simonedb, Aug 24, 2011.

  1. simonedb

    simonedb Member

    I had positive SSB but not SSA

    does anyone know much about that test and what additional tests would make sense to pursue to see what is going on with immune system?
  2. Mikie

    Mikie Moderator

    They are supposed to go over test results with you.

    Love, Mikie
  3. Mikie

    Mikie Moderator

    I just don't get it why docs think they can "phone it in" when treating, or mistreating, patients. He should have had a followup appt. where he discussed the tests and why he wants you to have info on these two auto-immune conditions. Like you, I always do extra research on my own but it is meant only to augment what my docs and I discuss. This doc isn't doing right by you. If it were me, I'd call his office and get a better explanation. I'm so sorry this doc hasn't helped you. All he did was further confuse the situation. I hope someone here can help you. Good luck.

    Love, Mikie
  4. simonedb

    simonedb Member

    thanks mikie
    I can't see the comment I made to you which you responded to where I said he sent me a letter though now, can you? I am not sure what happened to it.

    That is interesting perspective what you are saying, I tend to agree--its a whole painful topic to me to get into, could write a book on it.....bottom line is I see him as too busy and that managed care ties their hands a little bit, but that doesnt make it right
    [This Message was Edited on 08/25/2011]
  5. Mikie

    Mikie Moderator

    Managed care has cut payments to the docs but in this case, there would be questions and he should have set up a face-to-face appt. to go over the tests, more tests and what it all might mean. Even my managed care docs do that much. It's not too much to expect. Again, good luck in getting the info you need.

    Love, Mikie
  6. spacee

    spacee Member

    I am positive for Sjogren's/SSA.

    CelticLaddie who used to post here, mentioned the Stratton Protocol. He was a prof. at
    Vanderbuilt Univ. but is now retired and ran out of funding for research.

    He used doxycyline 100mg once daily for 45 days. Then Flagyl 500 mg a day for 10.
    Repeat this for 4 cycles.

    It brought my ANA down from 1280 to 360.

    I seriously dislike posting what has helped be because we are all so different.

    There is another protocol using minocycline (relative of doxy) at Road Back Foundation
    (put a The in front and you will get a help with addiction site). The doctor has been
    so frustrated that he has written a book called The New Arthritis Treatment. He rambles
    a LOT but the treatment is in the last two chapters of the book.

    This book is for all autoimmune diseases according to the MD who wrote it.

  7. simonedb

    simonedb Member

    hey, did you have the ssb too? I had only ssb not ssa so my doc sent me aletter and an article with the results and said he wasnt sure what to make of it since didnt have ssa too, he said it might be worth looking into it more, just left ball in my court. sigh. i did a little research, it sounds like i could get a few dif opinions from dif docs with a result like that, soem might think i have sjorgens or lupus some might think its nothing. bottom line is I knw I probly can't handle corticosteroids or the antimalarial drug.......I am curious about the abx you mention but don't you hear some stories where some people do abx and get worse? I know a woman in town who has lymes and lupus and before she knew she head lupus she did abx to deal with lymes and she got a lot worse.......such a crap shoot.
  8. Mikie

    Mikie Moderator

    Linda, it's interesting you mention the ABX. When I first started running a temp, I did three pulses of the Doxy. My gyno put me on both Flagyl and Bactrim because he thought I had an infection in the bladder or somewhere else in the pelvic area. That didn't clear it up so he ordered a course of Augmentin. None of that helped what I now believe is interstitial cystitis but my Sjogren's symptoms improved a lot and so did my RA. Hmmmm!

    Simon, a lot of people feel much worse when they begin ABX for Lyme and mycoplasma infections. Just taking an ABX makes the bacteria more active. Unless a person is truly allergic to the ABX, it usually helps to drop the dose or take it only every other day until enough of the bacteria die off to make it tolerable. Many mistake a Herxheimer reaction for an allergy. Herxing definitely makes a person feel worse but it signals that the ABX is working. Very few docs explain this to people. Also I've never met a doc who told me to take probiotics while on ABX. Actually, we need to take probiotics all the time for a healthy gut and immune system.

    I know the Roadback Foundation recommends ABX for RA. I just made the possible connection for both the RA and Sjogren's.

    Love, Mikie

  9. spacee

    spacee Member

    No, I did not have the SSB too.

    I have had a positive ANA since my 30's but it stayed pretty low (180/360). After
    awhile with all the CFS stuff, I forgot about it.

    Then a friend with FM was having alot of stuff coming back positive in the ANA and
    she asked me to have mine checked. That's when I found out that the SSA was positive.
    It had never been before.

    Agree the antimalarials are toxic to the body and might do some good for awhile but
    later...v. bad.

    If you don't have the lupus rash on your face, then I would wonder if you truly have lupus.
    My friend did have the lupus rash (mylar) but the doc's were blowing it off and insisting
    that she has CFS/FM. It's a crazy world.

    My doc told me that I had a mixed tissue disorder. 6 months later, Friend asked me to
    have an antiRNP test done. Doc asked me "what is this for". Me, "I don't know". It
    turns out it is a test for mixed tissue disorder....and mine was negative. He still charged
    me $400 for doing the test.

    Mikie is right about the herx. But so many ppl have bad reactions to things like..Transfer
    Factors that it is scary to know what to do.

    That is interesting, Mikie, that you just connected that with the doxy. More docs should
    know about doxy/minocycline.
  10. Mikie

    Mikie Moderator

    Well, the Sjogren's and RA are better but it now appears I have a mild case of interstitial cystitis and have been fighting a virus for several days. It never ends with us and just when we think we have one thing under control, BAM! up pops another condition. It's enough to make a person crazy.

    I just did a booster of the TF 200 and did it ever cause a reaction. I'm glad my immune system reacted but I have to wonder whether it is good for my auto-immune issues to have my immune system on such high alert. You are right; it's scary to know what to do. I think as soon as things settle down, I'm going to try to do the peptide injections. If they are successful, it should address all these things except maybe the RA.

    Love, Mikie

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