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Thread: What causes Wegeners?

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    Default What causes Wegeners?

    Wherever you look Wegeners is listed as cause unknown OR caused by infection.

    I had a severe and totally out of control c-diff infection. I have absolutely no doubt that this is what triggered Wegeners.

    Anybody else?

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    I dunno. My first symptom was an ear infection that did not respond to the usual treatment. I added a cough, night sweats, loss of appetite, and general fatigue. I was diagnosed about a month after the ear infection started. Up until then, I had been the picture of health...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    One vote for "cause unknown".
    Thanks Pete.

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    When I was DX'd in Sydney they had a serious cluster of cases at the same time (from memory same number of cases in Sydney in one quarter that they'd expect statistically for The Entire Nation in one year).

    The specialist told me "from this we'd imagine there's some kind of environmental trigger".

    So far I'm inclined towards a combination of:
    1) genetic predisposition
    2) diet
    3) biological or environmental trigger

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    I told my Wife it was the job that I do, and the doctor told me to retire, and get my wife to get a second job. I wont repeat what she told me,
    and guess what.... I am still working.

    Regards Woz...

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    Mine's almost the same as Pete's, but took two years after the ear infection for me to get admitted into the hospital with more symptoms so it could be diagnosed.
    MikeG-2012

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


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    Quote Originally Posted by MikeG-2012 View Post
    Mine's almost the same as Pete's, but took two years after the ear infection for me to get admitted into the hospital with more symptoms so it could be diagnosed.
    Mine's like Pete's but more like Mike's! The big weird ear infection that seemed to come from nowhere, and was resistant to the usual antibiotics, followed by two and a half years of sinus and ear problems, followed by lung involvement which led to a diagnosis. So could be that the ear infection triggered the Wegs, or else, as it seems to me, it was PART of the Wegs, the initial noteworthy event, and the Wegs had been triggered by SOMETHING. Two weeks before, I'd had a cold and then been heavily exposed to incense in a Catholic church, and I am not Catholic... it was to the point of violent coughing during the service. I work with clay and have been exposed to silica dust over the years, also considered a trigger. Also, I had had various ear weirdness such as tinnitus and fullness off and on for about 8 years prior to the ear infection. I had had allergies and asthma off and on throughout my life and a lot of bronchitis as a kid and occasionally as an adult. All of these I see as either triggers, symptoms, or hints at a predisposition, but not really causes.
    Anne, dx'ed April 2011

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    I was fine until I moved backed to Ohio. 2 months after moving here I had a hard time breathing so a dr. gave me a nebulizer machine. I called people out to clean our furnace vents and they said the house used to burn coal in the furnace, and that the vents were black. I also a got ear infection that the antibiotics ended up giving me c-diff also ( lost 20 lbs and thought I was dying ) It wasn't until about 5 months later I found out I had wg. So I think in my case it was environmental ????? I never did like OHIO. Its weird though how a lot of us start out with ear infections.
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Quote Originally Posted by Debra C View Post
    Its weird though how a lot of us start out with ear infections.
    I think the ear infection thing is very weird, too. I never had one in my whole life, unless maybe as a baby, and then whammo! Picked one up at age 58 out of the blue. And it wouldn't respond to antibiotics until we used the big gun, Levaquin, along with prednisone. My subsequent recurrent sinus infections would respond to antibiotics when combined with prednisone. But we kept having to change the antibiotic, and once off the meds, they would come back within a few weeks. And the whole time, I had a froggy voice and lots of unexplained coughing.

    We know Wegs isn't an infection, but it tends to mimic infections and other things, and there must have been some infection in there, too, if antibiotics did anything at all. I might theorize that once Wegs is underway, there is inflammation that causes blockages in the ears and sinuses, which allows bacteria to build up in trapped areas where it can't drain, such as the middle ear, and infections are the result. Plus it could have been triggered by an infection in the first place, setting the stage for more infections as it works its inflammatory damage upon our tissues.

    So which came first, the infection or the Wegs? Add in the environmental triggers and hereditary predispositions and you have a big mystery on your hands.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    So which came first, the infection or the Wegs? Add in the environmental triggers and hereditary predispositions and you have a big mystery on your hands.
    I see no mystery.

    The autoimmune system's job is to save you from infections. Wegeners is an adaptation of the autoimmune system. Get an infection you can't easily beat and your system reacts. It has a vast number of methods of doing that and tries one after another until the infection is halted. The greater the threat, the more desperate your autoimmune system's reaction. MOST of the things done by the autoimmune system are reversed once the infection stops. Wegeners is not. Most of the ways in which it adapts don't kill you. Wegeners does.

    About a third of the case studies I read indicated the patient had some serious major recurrent infection, like c-diff or ear infection, listed in their medical history as part of the case study. About two thirds made no mention of a prior/incorrect diagnosis while one third had at least one wrong diagnosis before WG. Those with a wrong diagnosis, if mentioned at all, had c-ANCA counterindicated.

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