Home Forums General Discussion Introducing myself

  • This topic has 6 replies, 6 voices, and was last updated 16 years ago by Pip.
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  • #299947
    Anonymous
    Participant

    I'm Vicki. I have Sjogren's and an Autoimmune thyroid disease as well. I browsed this forum 2 years ago when I first got the blood test results that showed anti-SSA. Everything else was pretty normal. SInce then I have started with other Sjogren's symptoms and I'm on Restasis.

    I haven't started the AP but I'm filing it away in my brain for later. I have yet to read or talk to anyone that has had great success treating Sjogren's with antibiotics. I'm hoping, though! I do have a rheumatologist back home who was willing to go the Minocin route if/when I choose. I traded emails with a couple of Sjogren's patients but I haven't heard from them or seen them on the boards. One of them said Sjogren's isn't very treatable via antibiotics because it may have a viral component to it's origin as opposed to a mycoplasma origin. That would stink, now wouldn't it?

    Hope you don't mind if I lurk here off and on and gather information and pray for more research that leads to a CURE for all of these awful diseases.

    My info: I'm in my mid-thirties, married with three boys! We are living in Singapore for a few years with my husband's job and then we'll be returning to central Illinois.

    Thanks!:)

    #310284
    Michele
    Participant

    Hi Vicki,

    Thanks for your introduction and welcome! Chime in anytime!

    Take care,
    Michele

    #310285
    Maz
    Keymaster

    [user=197]Vicki[/user] wrote:

    I'm Vicki. I have Sjogren's and an Autoimmune thyroid disease as well. 

    …. I have yet to read or talk to anyone that has had great success treating Sjogren's with antibiotics.
    Thanks!:)

     

    Hi Vicki,

    I have a dear old college friend living in Singapore with her young kids, too. She loves the ex-pat life there…beautiful place!

    Is your Sjogren's primary or secondary? I've read of others having difficulties treating primary Sjogren's with abx and that secondary seems easier to resolve. That's not to say it's the same in every case, though, so please don't take this as gospel! This  comes strictly from reading the posts of others on other support sites. Every case is so unique and shouldn't dissuade you from trying AP, if you're able.

    The thing that caught my eye about your post is that you have an “AI” thyroid issue (what type?), as well, which I have read can have a genetic, but mycoplasma-triggering component to it – just thought it might be connected somehow. Sharon Briggs has provided some info on this here:

    http://www.rense.com/general7/microplasm.htm

    Peace, Maz

    #310286
    Kim
    Participant

    I agree with Maz and think this stuff has to be related.  I grew up as the healthiest kid on the block and then everything went south, one disease at a time.   SD, RA, then Thyroid and Sjogren's and now it's quite a laundry list that disturbs me to have to list.  You simply can't throw pills at every symptom for every disease, when the only thing that makes sense is to go for the root cause and damn our doctors for not helping out more!  We've all lost precious time in researching and learning things that they should have been taught in med school or they should have been curious enough to learn about.

    We learn so much from each other, so everyone keep posting.   Kim

    #310287
    Lynne G.SD
    Participant

    Hi Vicki,welcome to the gang.I had SS along with SD and have no more symptoms of SS anymore.Have you checked http://www.marshallprotocol.com  to see if they have anyone on that site who is having results. I have heard from many that regulear AP does not work well for SS  Just a thought.   Lynne G./SD

    #310288
    Anonymous
    Participant

    Thank you for all the welcomes!

    I am not sure whether I have primary or secondary Sjogren's.:D You think I would know! I've done the reading and research but I just don't fit into either category 100%. I have Hashimoto's Thyroid disease which I've had since I was 6 years old. Yes, I know, very young to be diagnosed with it! So I had an autoimmune disease before the symptoms of Sjogren's showed up in my mid-thirties. However, I also show positive anti-SSa antibodies in my bloodwork. Everything else was normal. No ANAs or elevated sed rate or anything. Yet. So I fit into both categories!:P I guess time will tell!

    I read the New Breakthrough in Arthritis book and something really stood out to me. In his research, Dr. Scammel (was that his name?) found that nearly all RA patients recall having “walking pneumonia” in their past. This is caused my mycoplasma! It caught my attention because I had walking pneumonia as a 10 year old. Interesting. I really think he was on to something. I just wish someone could perfect his work and exact a lasting cure. Maybe the Marshall Protocol is getting closer but at what expense to the patient. My goodness! I don't think I'd be able to stay out of the sun to the extreme that is recommended in that protocol. I need to really think it through and study more. Luckily, I feel that I have time on my side right now. Also, I don't truly understand all the Vitamin D/hormone aspects of the Marshall protocol. I start to study it and it loses me! :headbang: I just need someone to hold my hand and say “This is what you need to do…..step 1:…….” Unfortunately, it seems like we have to figure most of this out on our own!!!!

    Anyway, I'll stick around and read and study and encourage all of you along the way. I truly believe that AP and/or MP are on to something in regards to these diseases. 🙂

    #310289
    Pip
    Participant

    I think that fluctuating hormone thing leads us to more and more of these disease.  But thats me – as a doc and they say 'coincidece'.  I'd hang here and learn.  You never know when the info you saw is EXACTLY the info you NEED.

    Hugs,

    Pip

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