What caused your Wegeners?

[Doug]

Kimbangu, you bad boy look what you did to Dougie, he LOL'ed himself

It was not a pretty sight, either.

[elephant]

I like the kitty cat picture. Looks like the lion is hungry like the wolf!

[Kimbangu]

I know,I know, I must remember to be more SERIOUS in future. I should stick to lurking. I'm here to learn. But this is a great forum (and I just love the way the threads lurch disturbingly "off- topic" after only a page or two.......)

Curiously , I was on Doxycycline ( antibiotic) as a malaria prophylaxis for 4 years before I was diagnosed with WG. I was assured the antibiotic could not have been the cause. But how can they say what WASN'T the cause when they don't know what WAS the cause? - It's kinda boring. I hate WG.....!

[Sangye]

Kimbangu, please don't get serious or just be a lurker! I enjoy your posts. The off-topic straying is natural. We can catch ourselves and start a new thread when necessary. It doesn't mean we can't still have relaxed "conversations."

I think an antibiotic (or any drug) used long-term causes such imbalance in the body that it can produce disease. Can it produce Wegs? Sure, why not? Just because we're psychologically accustomed to the idea of antibiotics and other drugs, doesn't mean we are physiologically accustomed. The body is still going "WHAT???" when we add things like doxy.

[gwenllian111]

My mum tortured herself for years and years, and maybe still does, as she thought my WG was caused by me using her plant pesticide spray one day when I was 13 years old. The other theory was the MMR vaccine being given to me twice, by accident. My mum blames herself for me having it, but it's rediculous. These things just happen, and maybe we're never meant to know why.

[jola57]

There are as many theories as there are wegs patients, until more tests are done we just don't know

[LilyPony]

I got a nasty cold, spent an afternoon in bed feeling terrible through the next morning. When I got up in the morning, my eye was swollen shut. Cold went away but it took hefty prednisone to get eye back to normal. About 2 years of dr shopping before finally getting one to agree to a biopsy which led to diagnosis. I'm convinced the cold triggered it but was probably predisposed to an autoimmune disorder since my mom had RA and fibromyalgia. Every flare up is triggered by a cold (runny nose and/or sore throat) and it's very tough to avoid illness with 1 and 2 year olds in daycare.

[Sangye]

Hi LilyPony,
Wow, I don't know how you do it. Wegs and 2 toddlers??!! I can't imagine staying free of infections with exposure like you have, much less how you can find the energy and strength to parent small children.

What meds are you on? What other areas are involved? Oh, and BTW-- welcome to the group!

[JanW]

I have tried to think and think back to 2005 when I think my SS first started and I can't remember anything out of the ordinary in terms of getting sick (other than feeling short of breath, of course). We had a flood in our basement, and I always attributed the "asthma" to that. I believe I started flaring last winter with chronic sinus headaches and nosebleeds even months after I stopped getting them (multiple doses of pred later) I was having crusting and nosebleeds. Then the bridge of my nose suddenly and rapidly caved in.

[LilyPony]

Hi LilyPony,
Wow, I don't know how you do it. Wegs and 2 toddlers??!! I can't imagine staying free of infections with exposure like you have, much less how you can find the energy and strength to parent small children.

What meds are you on? What other areas are involved? Oh, and BTW-- welcome to the group!

Oh we just hang in there! My case is incredibly mild and slow to progress, nothing like what many of you deal with each day. I do get tired more easily than I should and get winded if I exert myself. I just HAVE to find the strength and energy to be the best parent I can be.
Thanks for the welcome, meant to introduce myself but havent' had time and just jumped in and started babbling.