Need help with sjogrens syndrome

Discussion in 'Messtafarian' started by messtafarian, Nov 20, 2014.

  1. messtafarian

    messtafarian Member

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    Need expertise here.

    This last visit to my doctor she ordered an ANA test, and then an autoimmune panel. I am not positive for anything but one antibody called anti-ssb/la; its companion, anti-ssa, is negative. There are a ton of other ones but I am negative for those too.

    That is a whole wormhole to go down really, because without visiting a rheumatologist there is no way of knowing if it is something called sjogrens syndrome or another thing called lupus, or if it is the start of adult onset diabetes, or cancer hiding somewhere.

    Anywhere this research goes sort of goes somewhere bad -- there is a drug called Plaquenil that I have no doubt I am allergic to because I am allergic to most all antibiotics except for the sulfas, cipro and zithromax. I can't really afford all these visits and tests so I have no choice but to try to Peat my way out of it.

    So I'm looking for *anything* anyone has found about novel treatments for autoimmune disorders; also anything I can do further to alleviate inflammation and stress. I have resolved to cut *all* gluten ( I was eating some bread, mostly sourdough) and possibly all grains for the time being. I'm taking progesterone but I am thinking about increasing the dosage; pregnenolone, calcium, occasional K7, now experimenting with thyroid. Thyroid at last check ( with supplementation) was .012 TSH and 1.27 Free T4. I have a bottle of DHEA. I think the dosage is too high at 30 mgs, but I took one of those today.

    I eat cheese, milk, fruit, coconut oil, slowcooked beef, potatoes, organic blanca tortillas, etc but I've been kind of slacking on doing real Peat. Been drinking wine (white), diet soda and coffee with Splenda and eating regular pasta and occasional totally bad things like cheap ramen and chocolate chip cookies from the store.

    I'm pondering a protocol here because I am tired of being sick and I have no interest in making the rounds to every sickness expert in town to hear they are not really sure what is wrong.

    Looking specifically for an alternative to Plaquenil (Maybe Flagyl?).

    If you find anything or have anything lying around you recall that might be helpful, please let me know.

    Thank you!!
     
  2. Poppyseed13

    Poppyseed13 Member

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    Hello messtafarian---
    I know next to nothing about Sjogren's Syndrome---but I do run across people struggling with Sjogren's, Lupus, and all sorts of autoimmune problems at the Phoenix Rising website. The site is for chronic fatigue, but apparently chronic fatigue is a symptom (or a group of symptoms) in many autoimmune issues.
    I think Peat's ideas have much efficacy in helping with autoimmune problems. Anyway, I am suggesting the Phoenix Rising site NOT as an alternative to Peat, but as an augmentation of his ideas.

    In good health,
    Poppyseed13
     
  3. OP
    messtafarian

    messtafarian Member

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    :). Thanks Poppyseed...seems weird no one else had a comment on this. Sjogrens syndrome is a fairly common immune disorder although it seems only people who have it have ever heard of it.

    I'm learning a lot from poring over page after page on the internet but nothing much related specifically to my situation.
     
  4. Henry

    Henry Member

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    It´s impossible to conclude that you have sjogrens based on a single positive antibody. What matters is not only the positivity but also the titer (how much more is in the blood than the average), as well as the correlation with signs and symptoms.

    A single positive antibody without anything else means nothing. Everyone of us here has several positive autoantibodies in the blood if you just test enough of them (without ever getting an autoimmune disease).
     
  5. Blossom

    Blossom Moderator

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    Messtafarian, I bumped an RP audio interview covering autoimmune issues (Autoimmune and Movement Disorders) that I thought might interest you. It is one of the interviews currently being transcribed here on the forum. Hope that helps you find some answers.
     
  6. OP
    messtafarian

    messtafarian Member

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    Thank you, Blossom, I'll head over.

    Henry -- I am a little unclear about the meaning of "Anti-ssb" versus "ANA". Are they the same thing? Meaning to say, did the test I took -- the "ANA Panel" elaborate on the "positive ANA" or are they different?
     
  7. Henry

    Henry Member

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    Anti-ANA means antinuclear antibodies, that is antibodies that bind to molecules from the cell nucleus. So the name represents a big group of different antibodes.
    Anti-SSB binds one of those nucleus molecules, so it is one of the many Anti-ANA antibodies.
     
  8. OP
    messtafarian

    messtafarian Member

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    Thanks so much! I couldn't figure it out from any forum posts on other sites. People kept saying " I have a positive ANA AND I have this or that." The medical literature didn't really give much of a definition.
     
  9. thebigpeatowski

    thebigpeatowski Member

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    Hi messtafarian...How is your digestion? Body temps? Pulse? Do you have other symptoms?
     
  10. OP
    messtafarian

    messtafarian Member

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    Oh, I have crazy wicked more symptoms. My stomach is destroyed. Horrible reflux even after a proton pump inhibitor. IBS-D AND C. I had a parotid gland that swelled up so I couldn't eat anything without searing pain every time I salivated. That resolved, then a very atypical bout of congestion, sore throat. Ear infection. Everything.

    I have never really ever *felt* more ill in my entire life.

    And despite all this, I never cracked a fever as far as I know. My temps have gone way down, in fact -- 97.8 in the middle of the day during the worst of it.

    I got seven days of Levaquin from the doc two days ago and things started to settle down a little, and I am feeling better. I was so sick I was *losing time*, dissociating, tremors, wild dizziness. I couldn't carry on a conversation without feeling like I was going to faint from the effort.

    Before I got the antibiotics I was thinking I had meningitis. I'm still thinking maybe so. I did have neck pain throughout but I thought it might be the ear infection.

    My stomach is settled down also, the parotid is back in place, and the ear infection is subsiding with the Levaquin but I'm a little worried at the moment about what is going to happen when this course is finished.
     
  11. tara

    tara Member

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    If you think meningitis is a possibility, this is very urgent - should be checked out today, not next week.
     
  12. OP
    messtafarian

    messtafarian Member

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    I think it might have been. I actually did not realize how sick I was until I started feeling better. I'm going to try to get back to her office in the next couple days.
     
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