Possible cause of Wegeners?

[Chas]

Hi, I was diagnosed with Wegeners in January 2011 aged 58 and have been on remission for the past six months and finally off steriods but still on azathioprine.
I am aware that according to medics there is no proof of what causes Wegeners but I have suspicions of my own as to a possible link to what could cause Wegeners.
My suspicion is contaminated water.
Let me explain my reasons to link this to Wegeners!
I understand that most houses built pre 1960 in Scotland had lead pipes for the water supply and before I moved to my present house 15 years ago my two previous houses had lead water pipes. So for 43 years I believe I have been drinking lead contaminated water.
What brought this to my attention is I met up with my old neighbour who lived next to me for 40 years and guess what he was diagnosed with three years ago? Yes Wegeners Granulomatosis!
Is that a coincidence or what?
Not as far as I'm concerned I'm afraid.
My consultant informed me Wegeners affects 1 in 30,000!
So for two people living next to each other for 40 years and drinking the same water supply to be diagnosed is beyond coincidence I think!
I would be interested in any thoughts on this subject!

Cheers
Chas

[jakekell]

Chas,

My Mom and Dad's family came over from Scotland to the US
. I was diagnosed at 59-60 years old, the docs do think I have had it a very long time. A Dr. in the USA claims Scottish people have higher than normal number's of AI diseases. 1 in 30,000 is high or is it in our genes, from the way our people ate before us?

Mary

[im so blessed]

I have wegeners. Dxed 10 years before my next door neighbor and best friend who was dxed with perifial nerve vasculites. Did alot of the same treatments. We joke it was the pond we grew up swimming in every day in the summer. She is 2 days older than me.????

[annekat]

Chas, I'm the same age as you and was dx'ed just a couple months after you. I'd had it for 2.5 years in my sinuses but wasn't dx'd until it went into my lungs. I think I'm now pretty much in a medicated remission, though no one has said so, and am still on pred, MTX, and Bactrim (the sulfa antibiotic which can go by different names.)

Many possible causes or triggers for WG have been hypothesized, including too much exposure to harmful substances. So although it may not be the only cause of WG, it seems perfectly plausible to me that both you and your neighbor could have gotten it from exposure for many years to lead in your drinking water.

[mrtmeo]

I have a theory that it might be a morphed version of syphilis.
Syphilis can cause saddle nose deformity.
With all the stealth viruses and foreign proteins in vaccines pumped into our blood stream and all the genetically engineered foods changing our dna especially in the gut, there is probably now real way to figure out what causes what.
Heavy metals could help trigger misfolded proteins or changes in the pathogenic toxin expressions, but we may never know.
I believe it is extremely important to eat clean, unadulterated foods and repopulate our gut with good bacteria.
Our gut is 80% of our immune system and effects our brain function.

I don't know if it is just my new knowledge of vasculitis, but it sure seems like it is becoming more prevalent.
I would like to see the progression over the years on the prevalence of vasculitis.

Chronic lead poisoning can cause extreme aggressive behavior and this is opposite of what I see in the vasculitis community. I find people with vasculitis to be very compassionate.

[Tom]

I am nearly the same start as annekat! Sinus, then lungs and kidneys! I do believe that the disease is environmental. I was 27 years working railroad maintenance. Who knows what that stuff is leaking out of some rail cars. Also I had a pretty serious cancer surgery, "Radical surgery" as my oncologist put it and I read that there is some train of thought that it can begin from a virus or bacteria that are hospital born during major surgery!
Ive had a back injury that caused some bleeding on my spinal cord.
What most recently stood out for me was that I read an article that said that AI diseases have been linked to a lack of proper rest! After my back injury, I spent many nights awake and throughout the following day because I couldn't sleep for the pain in my back, I had broke it by the way!
That was in 2000 and my troubles began in 2006 with cancer and then the sinus and breathing issues between 2008 and 2009 and then all hell broke loose it seems.
I did however, grow up poosr and my early life we lived in sub par homes that the folks rented and who knows what the well held or the out house germs etc. But Im the one that has it and all those around me who lived/worked in the like conditions have no wegs that I know of but have the usual arthritis that comes with age!