What causes Wegener's Granulomatosis?

**Kimbangu** · 04-13-2011, 06:59 PM

Originally Posted by Sangye

Kimbangu, it was someone I knew in another Wegs group. If you PM me I'll give you the link and his name.

It's nice to see you-- how are things going?

Diagnosed in Nov 2009 I am in drug maintained remission since may 2010. I'm on 5mg pred, 100 mg Imuran. I have partial deafness, Tinnitus , and lost a bit of feeling in my right hand which feels cold all the time now. My last white blood cell count was 4.0 , absolute neutrophyl 2.8. My kidneys seem to be holding up but they took a hammering.

I just pop in once in a while to catch up on the news, sorry to be such a lurker guys!

**gmyi** · 04-13-2011, 07:48 PM

I have blood type O + and still have WG and I used to be and work in dry places with clean air

**chrisTIn@** · 04-13-2011, 08:42 PM

Bloodtype A here.
Had a nasty infection with Q-fever prior to my WG-diagnose.

Q fever is a zoonotic disease caused by Coxiella burnetii, a species of bacteria that is distributed globally.

Thought I recovered from the Q-fever quickley, but stayed tired.
Was working in my daughter's student's home, which my hubby and I kind of renovated.
Was very dusty there, I did wear a dust-mask, but maybe all that dust from the walls of her (old) bathroom triggered my Wegener's too...

**mishb** · 04-13-2011, 11:42 PM

O+ for me
By reading this forum, can only say a very lot of stress in 2009 and/or mould in the bathroom prior to renovations (but then the same as the rest of the members of my family and they are fine...I think). Got a headcold the night of my fathers funeral in July 09. Felt absolutely lousy all day and woke next day with full blown headcold. Sinus infection started from there. Had been diagnosed with RA and Low vitamin D many months prior to this. Funny, had an intern look at my symptons on Monday (with Rheumy) and he said, I would never have associated RA and a sinus infection as anything other than two separate conditions. I now know that the Rheumy will have a lot to teach this young lad

**gwenllian111** · 04-14-2011, 01:36 AM

I first had WG when I was 14 years old, so my poor mother was convinced it was something she'd accidentily exposed me too (ie. Garden pesticides). However, in school, I had the MMR vaccination twice as the original school records had been lost - there was some debate as to whether that had my immune system react abnormally.

The reality is, the WG is here, it's not going away, so what can you do? I don't think a 'cause' will ever be determined.

**Daggar** · 04-14-2011, 02:32 AM

Originally Posted by gwenllian111

I first had WG when I was 14 years old, so my poor mother was convinced it was something she'd accidentily exposed me too (ie. Garden pesticides). However, in school, I had the MMR vaccination twice as the original school records had been lost - there was some debate as to whether that had my immune system react abnormally.

The reality is, the WG is here, it's not going away, so what can you do? I don't think a 'cause' will ever be determined.

This post sent a chill up my spine..... Gwenllian, you were the same age as Holly at the time of diagnosis. In our never-ending search for "answers" I've always looked at the possibility that we may of exposed her to something that caused the WG but can't think of anything other than the vaccinations.

She has had "chronic uti's" since very young and was placed on antibiotics for extended periods (off and on).... I'm not sure if that confused her immune system??

The first thing that the doctors told us when we sat down with them at the time of diagnosis was "there is nothing you've done or could of done to change the outcome". To this day I'm still not sure that statement is correct but it helps you focus more on the "here and now".

If it is exposure to toxins in the home... .why aren't more family members who have experienced the same exposure inflicted? This would also appear to rule out the "genetic" factor.

I'm beginning to think that there are quite a combination of factors needed to cause WG .... maybe there needed to be a viral infection (cold bug) at the time of toxin exposure or vaccination???

Our FP's comment that it's like being hit by lightning seems appropriate now that the dust has settled.

**Sangye** · 04-14-2011, 03:46 AM

Originally Posted by Daggar

If it is exposure to toxins in the home... .why aren't more family members who have experienced the same exposure inflicted? This would also appear to rule out the "genetic" factor.

There are many factors that affect how a person will respond to toxic exposure. If one's liver function is impaired (not at a medical level, just not optimal function) they might not detox chemicals out as quickly as a housemate. Or maybe they have more body fat, allowing for greater absorption of fat-soluble toxins. Also, there are multiple biochemical detox pathways that only work properly if all nutrients involved are at optimal levels. Or they might have vertebral misalignments affecting the nerves that supply the liver, kidneys or GI tract (all necessary for detoxification). And I could think of at least 20 other non-genetic causes!

There are numerous inherited weaknesses that might affect detoxification as well. Exposure to certain toxins mutates the DNA.

There was a great PBS documentary by Bill Moyers years ago called "Kids and Chemicals." Here is the transcript if you're interested. NOW with Bill Moyers. Transcript. May 10, 2002 | PBS You can also buy the DVD. While we can't do anything about the fact that we already have Wegs, we can certainly do a lot to limit how many other people get diseases that are linked to toxins.

**Daggar** · 04-14-2011, 05:12 AM

Interesting -- "1 step forward -- two steps back". Regulatory bodies can't seem to keep up with industry and all the new products out there.

Sangaye -- are you familiar with this article?... Candida: Causes and Effects; Implications for Chronic Fatigue/Fibromyalgia, Autoimmune Diseases and Multiple Chemical Sensitivit | ENCOGNITIVE.COM

**RCOSSIO** · 04-14-2011, 07:39 AM

As a weggie...I know it can be frustrating trying to figure why you have WG. But then again same can be said for those with cancer, those with juvenile diabetes, those with heart failure. We can blame all the toxins but yet we won't give up our cars, tv, electronics, our gas, our electricity, low cost of food and clothing and not expect clean enviroment.

What I am really saying is...we can try to determine a cause to assist us in either developing a cure or in our case finding treatment that works better. So its either we give up the things we love or we adjust to the enviroment we live in. I am all for greener living...but at what financial cost.