Possible cause of Wegeners?

[vdub]

I think most studies are focusing on a genetic link. One study has found a suspect genes.
Siminovitch study
Syphilis, huh? I think you have mentioned that before. What makes you think this? Did your mom have syphillis? I don't think I can see any link. Yeah, both often result with a saddle nose, but that's like saying diabeties melitus is similar to diabetes insipitus because they both have diabetes in their name. I don't think your theory will gain much traction -- just doesn't make sense.

[mrtmeo]

Sorry, Blake, but I find the theory of WG being a "morphed form of syphilis" to be pretty far fetched. Syphilis is a bacterial infection and vasculitis is not. It's been theorized often that an abnormal autoimmune response such as WG can be triggered by a bacterial infection. So, possibly having an infection such as syphilis could trigger WG or other vasculitis. That doesn't mean they are the same thing. As for saddle nose, it appears to be caused by a cutoff of blood and oxygen to the area. This occurs in cocaine addicts, WG sufferers, and in the old days before any syphilis treatments were available, in advanced stages of syphilis, according to the brief research I just did. It said that advanced syphilis would cause damage to the blood vessels and tumors in the facial area. WG causes cutoff of blood flow through the formation of granulomas. There could be other conditions or mechanisms that would cut off blood flow in that area and cause saddle nose, as well.

Vasculitis may be more prevalent or may just seem so because awareness and diagnosis of it are improving. I imagine many have gone undiagnosed in the past and could easily have died as a result before anyone knew what they had. But you could also be right that the incidence is rising due to environmental toxins and unhealthful diets. Which doesn't mean that most of us on here have a bad diet, etc., necessarily. Most of us don't get vasculitis even if our diets are not the best. It seems to be up to chance, a lot, and possibly triggered by things we've mentioned.

I don't think Chas said he had chronic lead poisoning, though I don't know that he didn't. But he doesn't seem very aggressive, so far, and I have no reason to think he isn't compassionate. Most of us on here are, but we have had a few difficult people occasionally, and there are many vascies who are not on this forum. I do agree with you, though, that the vascies I know of and interact with are quite compassionate and caring, and I'd add that they are mostly quite intelligent and literate. I hate to think of those whose lack of writing and communication skills may make it hard for them to participate in a forum such as this one.

Viruses and Bacteria can share DNA.
When a pathogen dies, it can take on the DNA of another pathogen and start expressing its toxins.
These endotoxins can damage tissues or trigger immune responses.
With genetic engineering going on in our guts, we cannot even imagine the transformations that can be happening.

[annekat]

Viruses and Bacteria can share DNA.
When a pathogen dies, it can take on the DNA of another pathogen and start expressing its toxins.
These endotoxins can damage tissues or trigger immune responses.
With genetic engineering going on in our guts, we cannot even imagine the transformations that can be happening.

The autoimmune activity of WG and other vasculitis is not a pathogen, though it could be triggered in response to them, as you imply. But that triggering doesn't make any part of the immune system become a virus or bacteria, and it is neither. Your theory is just too out there for me and I would go along with what vdub says above. The fact that saddle nose can happen in both syphilis and in WG means absolutely nothing, any more than that saddle nose happens in both cocaine addicts and WG patients. And I think genetic engineering is a pursuit carried on by human beings. I think you have a very active imagination. Not saying there is anything wrong with that, but at some point, it is irrelevant to our discussions here.

[mrtmeo]

The autoimmune activity of WG and other vasculitis is not a pathogen, though it could be triggered in response to them, as you imply. But that triggering doesn't make any part of the immune system become a virus or bacteria, and it is neither. Your theory is just too out there for me and I would go along with what vdub says above. The fact that saddle nose can happen in both syphilis and in WG means absolutely nothing, any more than that saddle nose happens in both cocaine addicts and WG patients. And I think genetic engineering is a pursuit carried on by human beings. I think you have a very active imagination. Not saying there is anything wrong with that, but at some point, it is irrelevant to our discussions here.

I was referring to triggers or hijacking of the immune system in response to foreign proteins and endotoxins expressed by morphed pathogens.

[annekat]

I was referring to triggers or hijacking of the immune system in response to foreign proteins and endotoxins expressed by morphed pathogens.

OK, whatever. I think we all agree that vasculitis is often triggered by exposure to things, including pathogens, but not only those, presumably if we are predisposed to it, and that there is evidence of a genetic link that may predispose us, as vdub cites above. As for hijacking, it sort of seems to me that the immune system hijacks itself in response to these triggers.

[Swb21188]

Given WG is global not restricted to one area is in't likely to be caused by environmental factors. Otherwise there would be pockets of Hot spots where it's quite common. Also during my childhood we moved around a lot so we were never in the same place long enough to experience "long term exposure."

[annekat]

Given WG is global not restricted to one area is in't likely to be caused by environmental factors. Otherwise there would be pockets of Hot spots where it's quite common. Also during my childhood we moved around a lot so we were never in the same place long enough to experience "long term exposure."

We have heard of some "hot spots" on here, and they would be somewhere in the archives. There are many possible triggers that have been hypothesized. They may involve exposure to substances in many kinds of environments, whether they be outdoors, in the home, or in the workplace. Or they may involve exposure to infections and viruses. These would be triggers more than causes, and not everyone's trigger is the same. The genetic factors touched on above could explain more susceptibility in one person than another, whether within families or not. The consensus still seems to be that the cause isn't clear, while some likely triggers have been identified, and a genetic link has been hypothesized.

[annekat]

There are also some hypothesis the cause is related to Infections. For most of us until the time of diagnosis we had never heard of Wegener's wouldn't at least some of us had some knowledge through family medical records. None of my grandparents or great grandparents had or died of an autoimmune disease.

Infections were mentioned above as a trigger. And when people say there could be a genetic link I don't think they mean that it is directly passed down from one generation to the next; in fact most of the literature says it isn't inherited directly. It means that there are certain genes a person can inherit that could make them more predisposed. In a family, everyone doesn't inherit the same genes. Maybe that gene could be rare in the family gene pool, but one person could end up with it and no one else. In another family, the gene could be less rare and more might have it and be at risk of autoimmune disease being triggered by something. There have been people on here, whose posts are in the archives, who say that they have several in their family with autoimmune diseases, even more than one with WG. They aren't all that common, but there are some. Also, Wegener's hasn't even been known of for very long, and some of our ancestors could have had it before anyone would have known what it was. I don't think we can generalize about the incidence of WG or AI diseases in families, since what is true in one family doesn't appear to be in another. Vdub posted a link above on the latest thinking about a genetic link, and both he and the article would have a lot more factual stuff to say about it than I can.

[jakekell]

There are 7 cousins in my generation and 5 of us have AI diseases, one has passed. I have two children and one after turning 40 began slowing signs of AI issues, however no one has figured out where the issues are leading at this point. My brother's son is being looked at for MS age 41. The grandchildren of my generation already has a 9 year old has an AI disease. I don't know any answer's just know what our family has been dealing with. I have no cousins on my Dad's side so all of these are on one side of the family.

[annekat]

I don't have much incidence of known AI issues in my family, although an aunt and a cousin on my mother's side, but from two immediate families, both have RA. My grandma had arthritis, but I don't know what kind. My dad always had sinus issues due to a deviated septum; toward the end of his life they got worse, and for all anyone knows, he could have had at least smoldering WG. I'm not saying he did, and there is no way to know. Other health issues shifted the focus away from that area.