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Thread: What causes Wegeners?

  1. #11
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    Hi Everyone,
    I am a new member as I was just recently diagnosed. The doctors didn't know what was wrong with me. I think they thought I was a hypochondriac. However, after rash, cough, sinus issues and blood in my urine they started to look a little closer. I was fortunate to have a technician tell me my kidney levels were dangerously closed to dialysis numbers. Anyway, that is when it soaked in. I asked for a testing of Wegener's as my sister died of complications from it two years ago. I lost my older sister at 52 of chronic pulmonary disease and my younger sister has COPD...coincidence? I think not. So I agree with Pierre 42 about the genetic predisposition.

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    [QUOTE=Pierre42;99645]
    1) genetic predisposition/QUOTE]
    I think that if you don't have the needed genes you can't get wegs. I assume that there are probably more weg's in my tiny country than in the entire continent of Africa and China combined, which shouldn't be the case if an infection can cause wegs. i saw a map on some research paper which outlined the places in the world where different vasculites are diagnosed. Can't really remember much about it, but it showed that some vasculites were common in some parts of the world and not in others.

    I did read that a staph infection in your nose can trigger wegs or a relapse. I had it in my nose when I was dx'd.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  3. #13
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    Quote Originally Posted by Wegetarian View Post
    I did read that a staph infection in your nose can trigger wegs or a relapse. I had it in my nose when I was dx'd.
    Me too. Staph infection was consistently present during my original diagnosis as well as during my first flare up. Coincidence? I think NOT!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Mike, here are a couple of articles discussing the link between relapses and staph infections if you are interested.
    http://annals.org/article.aspx?articleid=706976

    http://www.biomedcentral.com/content/pdf/ar392.pdf
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  5. #15
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    To my knowledge, I've never had a staph infection. That being said, my PCP was originally treating me for sinusitis, so put me on at least a couple rounds of antibiotics, which did absolutely nothing of course, since my symptoms weren't actually the result of an infection.
    Linda
    dx September 2013

  6. #16
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    My nephrologist and a rheumatologist both told me that once you get one autoimmune disease, then your body is more apt to wig out and produce more AI diseases. Certainly true in my case - I was diagnosed with IgA Nephropathy at age 23 (chronic kidney disease), which is an autoimmune disorder that attacks your kidneys. I guess my body bored of playing around with kidneys and moved on to other organs to eat in the form of WG. I guess at least my body is a creative sort.....didn't just sit around and want only kidneys. My body is a go-getter - a go-getter of organ systems!

    Actually, there is a pretty good theory behind why people get IgA Nephropathy. Your tonsils are designed to hold ALOT of infection, and they keep recycling it throughout your body if you tend to get sick all the time as I did as a child. I would get strep throat, bronchitis, tonsillitis, and sinus infections all year long. I was in a household with adult smokers, so I'm sure that didn't help. My family was very, very poor and we didn't have any health insurance, so we hardly ever got trips to the doctor. No one ever thought, "Hey, maybe we should take her tonsils out so she'll stop getting so sick!" It wasn't until I had health insurance on myself in my early 20s did I finally get so sick that the IgA Nephropathy was found through a kidney biopsy did the nephrologist and ENT put 2-and-2 together and had me get a tonsillectomy. I believe that 23 years of infections running through my system from those DISGUSTING tonsils they pulled out really wrecked my immune system to the point it's scarred for life. The ENT said there was so much pus that came out of my tonsils, well, let's just say ewwwwwwwwwwww.

    So, I believe if a child is sick all the time and their tonsils are constantly swollen and full of goo, have them taken out. You'll probably save them from a lifetime of autoimmune diseases.
    Teri from Texas
    Diagnosed w/WG March 2015
    "Lord my God, I called to you for help, and you healed me." - Psalm 30:2

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    I love the thread the Alysia started.
    It might help you piece something together.

    http://www.wegeners-granulomatosis.c...-etiology.html
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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