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!

[annekat]

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.

[annekat]

Tom, your ideas of getting WG from substances exposed to while doing railroad work sound plausible. Also your reference to not getting proper rest makes sense, since that would cause stress, which is another thing often cited as a trigger. And the spinal cord injury, cancer surgery, etc. It seems there are so many things that could be candidates. BTW, I have not had kidney involvement, as yet, for which I consider myself lucky.

[Tom]

Tom, your ideas of getting WG from substances exposed to while doing railroad work sound plausible. Also your reference to not getting proper rest makes sense, since that would cause stress, which is another thing often cited as a trigger. And the spinal cord injury, cancer surgery, etc. It seems there are so many things that could be candidates. BTW, I have not had kidney involvement, as yet, for which I consider myself lucky. I even asked the Dr if it was possible that this could have been dormant from birth! While on the railroad, I had a foreman who him and his wife had 3 kids none survived but one died the same day, at the same hospital that I was born. Two of those boys born that day died from a virus they told him, one of which was his son! He said I must have been the boy that went home! That was in 1956, I felt funny but the foreman was okay and actually took me under his wing so to speak and visited my home as he and his wife traveled after retirement. Anyway, the Dr says it wouldn't lay dormant and reminded me that there is no known cause! I'm fortunate in so that they were able to stop the destruction of the kidneys, at least for now, but my lungs they couldn't get the Wegs under control in time.
Are you on oxygen? I'm learning all the time new limits. Dr tells me no more working because the lungs are that far gone now! I try to do things like use a chain saw for small trim jobs for my wife but its cut a 3 in branch and rest, cut another, rest and then it was cut one more and told her to take me to the house. I got as far as the deck and told her to just bring my concentrator hose to the deck. I took my oxygen tan off!
You said it got in your sinus also? Usually the first thing that goes, mine too! Do you have any sense of tast or smell? I get only bad smells but I think its sinus infection alot of times! I Was getting frustrated with my wife. I would accuse her of not putting onion in some dishes that I like and she swore she does! I watched her one day and yes she did use lots of onion, but I never tasted it. Frustrating to say the least!
Anyway, I find myself trying to find answers everyday while keeping up a good outlook on things!
To Chas, you will no doubt like me, and others, wondering what you did to deserve such an opportunity to experience this thing called Wegeners!

[annekat]

Are you on oxygen? I'm learning all the time new limits. Dr tells me no more working because the lungs are that far gone now! I try to do things like use a chain saw for small trim jobs for my wife but its cut a 3 in branch and rest, cut another, rest and then it was cut one more and told her to take me to the house. I got as far as the deck and told her to just bring my concentrator hose to the deck. I took my oxygen tan off!
You said it got in your sinus also? Usually the first thing that goes, mine too! Do you have any sense of tast or smell? I get only bad smells but I think its sinus infection alot of times! I Was getting frustrated with my wife. I would accuse her of not putting onion in some dishes that I like and she swore she does! I watched her one day and yes she did use lots of onion, but I never tasted it. Frustrating to say the least!
Anyway, I find myself trying to find answers everyday while keeping up a good outlook on things!
To Chas, you will no doubt like me, and others, wondering what you did to deserve such an opportunity to experience this thing called Wegeners! No, I'm not on oxygen, not even close. Even though it went into my lungs, it was caught and treated in time to avoid a lot of damage, and my lung function, while probably not what it was before WG, is not bad. I just get out of breath a little sooner than I used to, because of the scarring from the damage, but it doesn't affect my daily life a whole lot. The sinus and ear involvement started 2.5 years prior to diagnoses, but Wegs wasn't suspected because it just seemed like the kind of problems a lot of people have, recurrent sinus infection, allergies, etc. The big ear infection at the beginning should have been a clue. This whole scenario of a delayed dx is common with sinus involvement. It took the eventual lung involvement to get a dx. And the sinus takes a lot longer to clear up with treatment, or at least it did for me, and I and many others incurred complete erosion of my nasal cavity and permanent ear damage and hearing loss. I don't have any sense of smell, except occasionally I think I catch a whiff of something. Don't know if it could be my imagination, but it seems to take me by surprise when I'm not thinking about it. As for sense of taste, I still have that, but it is not as sharp as it used to be. All in all, I'm doing quite well, with a normal inflammation level shown in my last blood work. I'm still taking prednisone, MTX, and Bactrim. I was intitially started on CTX to knock out the lung stuff, and it worked very well. I hope there is a chance you will get some of your sense of smell and taste back... some people do. I also hope you can get off the oxygen and back to a more normal life!

[vdub]

I think most studies are focusing on a genetic link. One study has found a suspect genes.
Siminovitch study (https://secure.e2rm.com/registrant/tribute.aspx?eventid=109949&langpref=en-CA&Referrer=https%3a%2f%2fwww.google.com%2f)
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.

[renidrag]

There is none in my family that I know of however I have no history with my father. He died at 51. Any way, back to lead. That is a heavy metal that I worked with most of my life as a Master Plumber. We would have to melt lead in a pot, out of fittings and pour and caulk hot lead for a long time. Inhaling fumes from many different substances. With lead water piping and other materials used even today, as the water travels through the pipe it builds up a sort of screen of small contaminants from the water to the lead or piping, in essence insulating the water from the lead. I am not saying it is or was healthy at all. The Romans loved lead so much they not only made baths, water piping, sewage piping, cooking utensils, plates, cups and many other items from lead. Our term plumber comes from the Latin "plumbum" or worker with lead. That is my lesson for today.
Dale

[jakekell]

I don't know any answer, but have been total by doc's something is in the genes in my family. My nephew that is being looked at for MS was told by his doc at Maimi University Hosp. that Scottish people have high rates of AI's...maybe true maybe not. My parents were first generation from Scotland, who knows, but maybe we will one day. Our entire family suspects my mom had wegs not as bad as most, we will never know of course. The lead used in pipes could have caused damage way back when? :predrage:

[mrtmeo]

The human genome project proved that we do not inherit diseases from our parents.
Genes cannot remove their protein sheath nor turn themselves on.
This process must be activated by two different complexed series of environmental signals.
This is why they never found the cancer gene.

Dr Bruce Lipton, The Biology of Belief
https://www.youtube.com/watch?v=jjj0xVM4x1I

[annekat]

The human genome project proved that we do not inherit diseases from our parents.
Genes cannot remove their protein sheath nor turn themselves on.
This process must be activated by two different complexed series of environmental signals.
This is why they never found the cancer gene.

Dr Bruce Lipton, The Biology of Belief
https://www.youtube.com/watch?v=jjj0xVM4x1I No one said we directly inherit vasculitis from our parents, as we do eye color and such. Vasculitis literature says we don't directly inherit these diseases. That is, if your mom has vasculitis, it doesn't mean you are going to inherit it or are at risk for it. What I think is being said (and I hope the more knowledgeable here will chime in) is that there are certain genes that have been identified as making people more predisposed to developing WG or other vasculitis. That doesn't mean everyone who has these genes will get it. Yes, genes are inherited from our parents, but we will not inherit an identical combination of genes as what our parents have, nor will we inherit the same combo as our siblings (unless we are identical twins, I guess). Genetics is complicated, some genes are recessive and others are dominant, and whether they show up in observable ways may depend on what other genes are present. Genes are in pairs, as I understand it. If you have one gene for blue eyes and one for brown, having inherited those from your two parents, you will have brown eyes, because they are dominant. It takes two blue eyed genes, one from each parent, to have blue eyes (that is, unpigmented vs. pigmented irises, and there are variations in these colors). I don't know to what extent the genes identified in regard to predisposition to WG are active dependent on what other genes are present. I am not a scientist and don't think you are, either. But I don't think top WG researchers would be investigating a genetic link if there was no chance of it. I'm not taking the time to watch the video you posted but may research the guy in it. There are lots of conflicting theories and ways of thought on these things and we believe what we choose to believe. I hope someone more knowledgeable about current WG research and findings will chime in here.

[annekat]

If this excerpt from Wikipedia is true, then it disqualifies Dr. Bruce Lipton from being taken seriously by me, for one:

Bruce Harold Lipton (born 21 October 1944 at Mount Kisco, New York (http://en.wikipedia.org/wiki/Mount_Kisco,_New_York)), is an American developmental biologist (http://en.wikipedia.org/wiki/Developmental_biologist) best known for promoting the idea that genes (http://en.wikipedia.org/wiki/Genes) and DNA (http://en.wikipedia.org/wiki/DNA) can be manipulated by a person's beliefs.

[mrtmeo]

If this excerpt from Wikipedia is true, then it disqualifies Dr. Bruce Lipton from being taken seriously by me, for one:

Bruce Harold Lipton (born 21 October 1944 at Mount Kisco, New York (http://en.wikipedia.org/wiki/Mount_Kisco,_New_York)), is an American developmental biologist (http://en.wikipedia.org/wiki/Developmental_biologist) best known for promoting the idea that genes (http://en.wikipedia.org/wiki/Genes) and DNA (http://en.wikipedia.org/wiki/DNA) can be manipulated by a person's beliefs.

His personal belief is not the point I am making, so if you watch the video, you will see how genes cannot turn themselves on or off without the appropriate environmental signal.

If you want proof of personal beliefs influencing the world around us, see Quantum Physics - Double Slit Experiment here
https://www.youtube.com/watch?v=DfPeprQ7oGc

[jakekell]

I am chuckling about Dr. Bruce Lipton research........really don't believe it and think a lot of researchers may not either. I heard there was a documented case of a dad/son that both has wegs now racking my brain where heard or saw it. I do believe something is going on in my family why don't know, but would love to.

[annekat]

His personal belief is not the point I am making, so if you watch the video, you will see how genes cannot turn themselves on or off without the appropriate environmental signal.

If you want proof of personal beliefs influencing the world around us, see Quantum Physics - Double Slit Experiment here
https://www.youtube.com/watch?v=DfPeprQ7oGc The sentence I posted was not about his personal beliefs, it was about him apparently "promoting the idea" that anyone's beliefs can be used to manipulate DNA and genes. If he promotes this idea, I can't take seriously other things he may say. And who said anything about genes turning themselves on and off? I think we all agree that there are environmental and other triggers that prompt the immune system to turn against the body, whether it involves genes or not. If there are genes that may make this more likely, that is not saying that the genes are the direct cause of it, nor that they have become active or inactive at will. Quantum physics is not something I understand or have time to delve into, but I would not deny that personal beliefs can influence the world around us. I just don't believe that they influence genes or DNA, or even if they do, then why would you think they could not turn themselves off and on if the person believed it hard enough? Not that I believe that or am sure that you do. I'm not sure what you do believe, as it seems to be all over the place. I don't say that I believe a whole lot of things, because there is too much I don't know, and one person telling me something or citing a source that seems weird to me is not going to make me believe something. Sorry, but I truly don't have the time to watch those youtube videos. There are too many other things I really need to be doing.

[annekat]

I am chuckling about Dr. Bruce Lipton research........really don't believe it and think a lot of researchers may not either. I heard there was a documented case of a dad/son that both has wegs now racking my brain where heard or saw it. I do believe something is going on in my family why don't know, but would love to. I'm with you, Mary. We all know that many of us are the only ones with WG in our families, but that in some cases, there is more than one. And in a family such as yours with lots of autoimmune diseases, I agree there has to be something going on. A genetic predisposition to getting these diseases doesn't seem the least bit far fetched to me. Again, that is not to say that everyone in such a family will get one, or that there are not environmental factors and things like infections involved as triggers. I think exposure to these triggers may be quite random. Nor does it mean that every case of WG involves a genetic predisposition at all! The fact that these genes exist, and affect some people's likelihood of getting WG, does not mean that a person without these genes cannot get WG. I don't think anyone ever said that.

[jakekell]

I don't think there is one answer to this and I really do think there may be a predisposition to different diseases such as AI. I think that it is possible that we have a makeup that reacted something, stress, infections, etc. when everything lines up it happens. I do hope they find out one day how to prevent this as our family has concerns for the following generations starting with our kids.

Mary

[annekat]

I don't think there is one answer to this and I really do think there may be a predisposition to different diseases such as AI. I think that it is possible that we have a makeup that reacted something, stress, infections, etc. when everything lines up it happens. I do hope they find out one day how to prevent this as our family has concerns for the following generations starting with our kids.

Mary I agree, there is not any one answer. The conditions that lead up to getting WG and other AI diseases could vary greatly from one person to the next. A lot of probable triggers have been identified, and a possible genetic link has been discovered. But that still doesn't get us to where we know how to stop the process from happening or to permanently interrupt it once it does. In other words, we still don't have a cure, and I hope, too, that we get one in time for the new generations that are already here and the future ones to come.

[gilders]

We've had a couple of babies on this forum (well parent's of them) which makes it hard to pick a definitive "cause". Triggers are likely, but I don't think there is a "cause" that you could give to someone who isn't already predisposed to Wegener's that would then "give" them Wegeners.

[jakekell]

We've had a couple of babies on this forum (well parent's of them) which makes it hard to pick a definitive "cause". Triggers are likely, but I don't think there is a "cause" that you could give to someone who isn't already predisposed to Wegener's that would then "give" them Wegeners.d

I suspect one day someone may hit on a cause, trigger that may give us some answers. My husband is 69 has the blood pressure of an 18 year old, smokes at least a pack/half of cigs a day {outside}, blood work is perfect. His x-rays good and can out work harder than a whole lot of people younger/same age. He could lose some weight maybe 25 pounds. I eat lots of veggies/fruit and try hard to do what I can to help my health. He does eat veggie, etc. at the table, but eats hamburgers/fries out often, loves cookies/sweets. He had a Grandmother that lived to 95 still eating fried chicken to the end, there is so much we don't know about what is passed to us in my opinion.

[annekat]

We've had a couple of babies on this forum (well parent's of them) which makes it hard to pick a definitive "cause". Triggers are likely, but I don't think there is a "cause" that you could give to someone who isn't already predisposed to Wegener's that would then "give" them Wegeners. I agree, a trigger is not a cause, and we don't know what "makes" the immune system respond to these triggers in that way for some and not for others. With babies, there would not have been much time for them to have been exposed to a lot of things in the environment, or to many infections, or to stress, so maybe something triggers it, and we may not know what, but a genetically inherited predisposition certainly seems like it could play a role.

[mrtmeo]

Vaccines dump foreign proteins into our blood stream where they don't belong.
They also, contain stealth viruses.
I believe these proteins are at the root of AI diseases.
The mechanisms and triggers could be many or maybe other pathogens take on these proteins and mutate.
It could also, be related to viral promotors put into our food supply as GMO's.
These viral promoters do not turn off.

[Tom]

When I was dx'd, it was explained to me there was no definitive cause of Wegs. It was also explained to me that the immune system gets a suspicion that something is not right in the body and sets out to attack. I believe the gist was that like the start of the sinus issues was a starting point as the immune system was trying to fix an infection or run something out of the body that didn't belong, when in fact there was no foreign bacteria or virus. The immune system just goes rouge!In the course of all of that the immune system gets confused and sees the disease going to other organs, (lungs, kidneys etc..) i.e. the immune system attacks normal tissue destroying it. When I asked why others that I worked with in my career did not get Wegeners. The Dr just shrugged and said that is what is not known and no cause has been pinpointed. He also said that it is all how your immune system is managed and that two identical work situations for two completely different people, one could have no problems but the other could get sick from environmental situations! This makes sense since there have been several lung cancers and one coworker and I had the same type of cancer gene. Our colon cancer was fast acting and he died of his in May of 06 just 2 days before I was tested and diagnosed with mine and I wasn't going to make Christmas that year. We both were stage 4. Just an example of the body doing its own thing for each person. We had the same oncologist and the Dr shared a little with me since we had worked together and even roomed together on the road crews. He said our treatments were nearly identical if not the same and we were both diagnosed at about the same stages. The point is that I believe it could be environmental, it could be viral or during major surgeries, they think wegs can be introduced to the body from a hospital borne virus or bacteria! Over the last 4 plus years since I was dxd, I read about all the possible causes and I was guilty or was a part of it all. As a young man I stayed out all night and drank a lot of beer and went to work the next day only to do it again and never got addicted to alcohol! But all the things that happened to me in my life, something must have triggered the Wegeners. I was active, I had endurance even as a smoker, I did not use illegal drugs. The medical community cant rally round an answer for us but still, I look to them to figure it out and to find ways to combat this damn thing called WEGENERS!

[jakekell]

Tom

Interesting thoughts on this subject. I am wondering how many of us had cancer prior to the wegs? I know I had cancer, radiation, chemo and I am sure weaken the body...

Mary

[me2]

Recent progress in the genetics of Wegener's granulomatosis and Chu... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/19864953)

Risks and relative risks of Wegener's granulomatosis among close re... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/18163522)

Risks and relative risks of Wegener's granulomatosis among close relatives of patients with the disease - Knight - 2007 - Arthritis & Rheumatism - Wiley Online Library (http://onlinelibrary.wiley.com/doi/10.1002/art.23157/pdf)

[Tom]

Hi Jake, I don't know how many had cancer prior to the Wegs, but as I tried to self diagnose prior to finding the cancer, I was fatigued, no appetite, queasy stomach and just no energy! When they found the cancer and I had the surgery, I had some serious bottom side issues like anal fissures (sorry but that is what they are) and my cancer symptoms never really disappeared! I did 16 weeks of chemo and radiation for 8 weeks, then I got a break from the chemo for I think 2 weeks and then for that period I did 2 weeks straight of radiation. I got a shot of steroid or adrenalin during that 2 weeks to bring my immune system up and give it a rest! I felt like a young man for about 3 weeks until I started the chemo again as scheduled! Like I said, my cancer symptoms never really disappeared and I would complain at every appointment but there was no reason other than I had major surgery and they expected me to have problems that they were going to deal with as they arose. So with in 5 years I was dx'd with Wegs after a flare and the loss of 2 lobes on my right lung and a severe case of COPD. I was told that my case was a bit of a conundrum because wegs usually was found and the meds were the cause of the cancer! Of course you can only guess, I wonder if wegs was there with the cancer! You were probably the same way because as I was told the year before when my RA count was high and my joints were all swollen, the Reumatoligist said that he wanted more proof of rheumatoid arthritis because to treat me would be dangerous and might be toxic to me because I had the chemo drug that they wanted to treat me with in a pill form. I think at that time, the RA didn't rule out an AI but wanted more proof and left me with an open appointment which I used one year later. The insurance wouldn't pay for the test needed for vasculitus testing if there was no evidence present!I may have misunderstood this part but I thought he told me that you can only have the stronger chemo once in a lifetime and I would have to be treated with a less effective plan and they feared it would not get the Wegs into remission. I was told that I was the talk of the medical community for a morning hook up with other facilities and I was the topic as the Dr said "Little ole you"! But yes I wonder how many have or had cancer before wegeners dx. I also wonder how many have had lobectomy's? My cardio that I hooked up with after the treatment plan was put in place said that there should have been a histology done on the growth that was blocking my air way that they called a hematoma and non cancerous! He said he would have done the test and he bet we would have found the wegs 3 months earlier while I still had most of my lung function and the kidneys would not have been harmed, maybe? Anyhow the oncologist was concerned also about 16 weeks of stage 4 treatment foe colon cancer where survival was very low! I think I had too much chemo but I have no qualms about the past, I am only trying to do the day to day things and have no bitterness! My only regret is that I would like to have my lung function back, it wont happen a So when did you have your cancer and are you cancer free? How are you now where the cancer is concerned? Do you think your prior medical history has an effect on your Wegeners?

[jakekell]

Tom,

You have had a lot to deal with and your so right we have to live today only. I had breast cancer 17 years ago and so far so good. We of course have had a few scares after checks where they thought it was back, but hasn't. I am not concerned about a return of the cancer even though I was told if it returns it will come back with a vengeance. I don't fret over the "what if's" just not my nature so that is fine. I don't know if my prior medical history has had an effect on my Wegener's, but I wonder if past issues weaken the body, provides the opening for things like wegs. I have has Hashimoto's Thyroid disease, which is an AI disease. My first Rhemy told me that when someone has Hashimoto's he often see's a 2nd AI emerge at some point, which make me wonder how things connect together. I had stated earlier AI is running wild in my generation, starting to show signs in the children of my generation so just a lot of thoughts as to how we all got to the wonderful world of wegs.

Mary

[marta]

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.

The list of Autoimmune Diseases is a long one, and the way that people dealing with them are treated by society at large (check out your own cases for examples) people tend to just deal with it if they can, and not share too much of what their battle involves. Here's a list: List of AI diseases and disorders | Find The Common Thread Foundation (http://findthecommonthread.com/list-of-ai-diseases-and-disorders/)

There is no known cause for ANY autoimmune disease and for that reason there is also no cure. They all share an etiology, but there is minimal understanding in this area (compared to the sexier diseases out there,) but the two factors that are known for certain are 1) There is a genetic factor (predisposition) and 2) There is a trigger. These triggers are different for different people and with the genetic factor in place it would make sense why some people get sick and others don't after exposure to a potential trigger. My trigger was the H1N1 vaccine, but it was not for most others. Viruses, bacterial or fungal infections, stress, lack of sleep, exposure to various toxins, pregnancy, fillings and dental work, other meds for other things and the list goes on. Basically along with our genetic predisposition, we need to have a bit of a firestorm happening inside, but my fear is that the 'All of None threshold' to set off disease is getting lower and lower.

They (those who study only Autoimmune Disease) also know that if you have one autoimmune disease, even if it's a seemingly insignificant one, you are automatically in the special prizes club because now you're even more susceptible to the nastier autoimmune diseases.

Our immune system is born just outside the stomach (a few layers back) but even though it's a system that travels throughout the entire body, it's still considered a unit, almost like an organ, in that it functions in an organized fashion inside our bodies for a specific reason. We know so little in this field. But our understanding of this important process is severely limited (in comparison) despite the immune system's connection to pretty much every serious chronic illness out there. Not just Autoimmune Disease.

There is much talk/research that is focusing on gut bacteria, which only makes sense since the 100 Trillion bacteria that reside in our guts have important roles in the various processes of our bodies, including enzyme creation necessary to support immune health. Our 10 Trillion human cells make up only 10% of the entity that we are when we put on our clothes every morning, gut bacteria making up the remaining 90 trillion single cells.

I believe we are on a new frontier, and I believe we will see a cure in our lifetime. I
only fear that the element that will lead us there might be too much for some people out in the land of 'how things use to be' - working together.

[vdub]

Vaccines dump foreign proteins into our blood stream where they don't belong.
They also, contain stealth viruses.
I believe these proteins are at the root of AI diseases.
The mechanisms and triggers could be many or maybe other pathogens take on these proteins and mutate.
It could also, be related to viral promotors put into our food supply as GMO's.
These viral promoters do not turn off.
extremely entertaining....

[marta]

I believe these proteins are at the root of AI diseases.....
....... our food supply as GMO's.


I'm not exactly on the same page as you but we're in the same book of not trusting those who report having our best interest in mind while only focusing on the profit margins.
I also believe that GMO's are a huge part of the problem and a major reason for the increase in autoimmune incidence over the last few decades.

I've mentioned this a couple/few times on here, but I think it is worth repeating and I apologize if I offend anyone.
I guess I do that (offend) now because I'm not on the party train where everyone sings the same songs. But looking for answers leads to some dark corners where I would not have liked to go if it were my choice, but once there, I feel I can't turn a blind eye and pretend I didn't find the things I find.

When two variants of a species are combined, 10-15 new proteins (that never existed on this planet before that moment) now exist. They live within the plant. There have been thousands of splices of wheat alone bringing about tens of thousands of proteins that have only been in existence in the last 50 or so years. Autoimmune Disease is a protein based disease. Our B and T cells use protein markers for targeting an assault. The first place the immune system is set to work is in our gut, looking for proteins that might be attached to viruses, bacteria or other pathogens. We've been evolving alongside our ecosystem for 4.5 million years. Our guts and immune system have figured out who is friend and who is foe. So now, in the last 50 years, there are thousands of new protein markers going into our gut along with every bite of your pasta or sandwich, and it's slowly killing us from the inside, but slow enough that nobody can be held accountable. Keep in mind that most if not all autoimmune diseases attack an organ or system and it bases it's attack on protein markers. So MS attacks the protein found in the myelin sheath, Rheumatoid Arthritis attacks the protein markers in the joint tissue, Wegener's attacks the protein markers found in a certain size of blood vessel, and on the list goes for the other 140 Autoimmune Diseases and disorders.

Also there is a North American harvesting trick that is used throughout the industry and that is to spray Roundup (a concoction of all sorts of nasty) on the wheat the day before harvest. This helps with the separation of chaff from husk. All of this roundup, designed to kill off the little creatures, bacteria, fungus, and all sorts of other things that could hurt the bottom line from a farming perspective, is now going into the at least 4.5 million years worth of evolution in the fragile ecosystems of our guts.

As for true GMO, that is some scary stuff, and the way they actually get there is as frightening as what they're doing. Some examples;

All natural organisms have barriers to protect themselves from the introduction of DNA from different species.
Genetic engineering (modification) involves finding ways to force the DNA from one species to another. These methods include:

- using viruses or bacteria to 'infect' the animal or plant cell with the new DNA
-using electric shocks to create holes in the membrane covering the cell and then forcing the new DNA in through those holes
- injecting DNA into egg cells with very fine needle
-coating DNA onto tiny metal pellets, and firing it with a special gene gun into a layer of plant cells.

So they're mixing corn with human genes - to make corn as a plant gel contraceptive that kills sperm on contact (DOW),
spider's web genes into goats (to harvest web protein in the goats milk),
fish and strawberries (to make frost resistant strawberries), and on and on the list goes.

I think the food we put into our bodies can be our greatest help and might have been our downfall in the past (before we connected the dots.)
I had a fantastic Skype about all of this with Anna, and she's been doing lots of research and it's been helping her greatly with the WG symptoms. I'm sure anyone who'd want to ask, she'd be thrilled to share her knowledge.

[marta]

I hop on, make a lot of talkie talkie and then disappear.
I'll avoid doing this in the future.:wink1:

Miss you my old crew.
Glad that we're all feeling so much better we don't have to be on here for help all the time like the old days.

[mrtmeo]

GMO's can create misfolded proteins which are very dangerous, such as prions causing, hoof n mouth, scrapie, mad cow, jakob-creutzfeldt disease, Alzheimer's, Dementia, etc.
The massive collateral damage that can be caused by GMO's alone has not been studied.

The creation of gmo seeds involves, shooting with a gun, gmo bacteria that is resistant to many different antibiotics along with a viral promoter (that doesn't turn off) and a different species of DNA (with a gene or genes), into the seed cells of a plant that they want to express that gene.
Those seeds that take the process survive and the rest die.
Now, imagine what happens when we eat this.

Here is more on GMO's and it's process.
Everything You HAVE TO KNOW About Dangerous Genetically Modified Foods (1hr 24min) | Institute for Responsible Technology (http://www.responsibletechnology.org/posts/everything-you-have-to-know-about-dangerous-genetically-modified-foods/)

Mercury, Aluminum and Dental work add another layer to autoimmune and other diseases.


(http://www.responsibletechnology.org/posts/everything-you-have-to-know-about-dangerous-genetically-modified-foods/)

[jakekell]

Anna I would be interested in hearing how you have alter you diet? I am gluten and dairy free so wondering what your doing?

[annekat]

Anna I would be interested in hearing how you have alter you diet? I am gluten and dairy free so wondering what your doing? Hi, Mary... I guess you mean me... I mentioned diet briefly early in the thread but I'm really not doing anything special. Sometimes I make efforts to eat less gluten and dairy, and I know that if I eat too much sugar, it has a terrible effect on me. Carbs like potatoes and rice don't seem to bother me much. I eat a lot of oatmeal for breakfast with fruit (usually a banana) and yogurt or a little milk or half and half. I do make an effort to incorporate more veggies, and notice I feel better when I do. For protein I eat eggs and chicken mainly, occasional tofu or fish, and try to incorporate beans and lentils, and a limited amount of cheese like feta, mozzarella, or pepper jack.
So, nope... I don't follow a diet, just use some common sense and avoid processed foods and too much sugar, gluten, or dairy. I haven't given anything up completely.

[jakekell]

Hi, Mary... I guess you mean me... I mentioned diet briefly early in the thread but I'm really not doing anything special. Sometimes I make efforts to eat less gluten and dairy, and I know that if I eat too much sugar, it has a terrible effect on me. Carbs like potatoes and rice don't seem to bother me much. I eat a lot of oatmeal for breakfast with fruit (usually a banana) and yogurt or a little milk or half and half. I do make an effort to incorporate more veggies, and notice I feel better when I do. For protein I eat eggs and chicken mainly, occasional tofu or fish, and try to incorporate beans and lentils, and a limited amount of cheese like feta, mozzarella, or pepper jack.
So, nope... I don't follow a diet, just use some common sense and avoid processed foods and too much sugar, gluten, or dairy. I haven't given anything up completely.

Anne_ I misspelled your name opp's. Marta mentioned your diet in her post so thought I would check it out. I am eating about as you do except I have no dairy or gluten at all. I haven't had dairy in almost 40 years and. gluten was off/on until just had to give it up. I am still struggling to get off all the weight I put on with the pred. I was 80-100 mgs when I went completely deaf and they didn't know what was wrong with me. I know that is the same struggle most have on here, on low dose now. I don't think I will ever get off it as will get down to 2mgs no further. I am 68 so losing can be slow anyway, but trying to get on my bike while in FL in the winter/swim. The sugar is an issue need to really get rid of it.

Mary

[annekat]

Oh, Mary, it wasn't me Marta was referring to, I see she mentioned an Anna in her post, so you are off the hook on my name spelling! I don't know who Anna is and tried to find out by scanning her posts, but I'm just now having my coffee! I'm 62 and could stand to be on a stricter diet, but just take it one day at a time and try not to buy too much of the less healthful stuff and none of the really bad stuff. Also on a budget so will do something like just keeping a pot of healthful soup going and eat it for days. Only gained maybe 25 pounds on pred and have lost it, but could still stand to lose some. Need to exercise more. Christmas was terrible for sugar! Always is. I manage to keep it out of my house most of the time. I'm with you on the pred, don't know if I'll ever get below 5mg., was at 7.5 once and that didn't last at all.

[drz]

Recent progress in the genetics of Wegener's granulomatosis and Chu... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/19864953)

Risks and relative risks of Wegener's granulomatosis among close re... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/18163522)

Risks and relative risks of Wegener's granulomatosis among close relatives of patients with the disease - Knight - 2007 - Arthritis & Rheumatism - Wiley Online Library (http://onlinelibrary.wiley.com/doi/10.1002/art.23157/pdf)

Good studies and we need more like these to find some answers.

[jakekell]

I am making soup today as it helps us get more veggies in. I gained about 40 pounds and had lost some then flared last spring so up went we the pred. I tried hard to watch what I was eating, but I think both of us were down about what was going on. Some days seem like a no win situation as exercise is tough at times.

[annekat]

I am making soup today as it helps us get more veggies in. I gained about 40 pounds and had lost some then flared last spring so up went we the pred. I tried hard to watch what I was eating, but I think both of us were down about what was going on. Some days seem like a no win situation as exercise is tough at times. Yep, soups like that are great. I'm feeling pretty good right now because though I'm still on 13mg. pred and 15mg/wk MTX, my latest blood work was very good and showed normal inflammation markers. A year ago, I was starting to flare and my inflammation markers were up! And I just took a walk on my road. Not feeling in tip top shape today so just went about a mile. But every little bit helps to build up more endurance. I know some days there is just too much going on to even work in a 20 min. walk.

[annekat]

Good studies and we need more like these to find some answers. Thanks for the reminder, drz, that we are veering off topic a bit. The studies Kirk posted links to really do look helpful in understanding what is going on here.

[jakekell]

That is really good a mile! I am going to get on my bike tomorrow and work at going a little further each day. I go at the end of the month to find out where my inflammation is now. I am on same amount of MTX, but my pred is 2mg. I should raise it up a little just don't want to doc at CC told me I could go down if my hands were better. I am still fighting the nodules/lesions on the bottom of my feet (under the skin) walking isn't great right now.

[annekat]

That is really good a mile! I am going to get on my bike tomorrow and work at going a little further each day. I go at the end of the month to find out where my inflammation is now. I am on same amount of MTX, but my pred is 2mg. I should raise it up a little just don't want to doc at CC told me I could go down if my hands were better. I am still fighting the nodules/lesions on the bottom of my feet (under the skin) walking isn't great right now. A mile is OK, but I know I can do better. My lower back was hurting a bit so I didn't push it. No nodules or lesions on bottoms of feet, though, thank goodness. I think I've relied on pred too much and should be able to get down quite a bit lower. I'd be happy to get down to 10mg. right now, which I was at for quite awhile in the past. But 7.5 or 5mg would make me happier.

[vdub]

Good studies and we need more like these to find some answers.
Those are good studies and they lead us to real answers! What's even more important is that the individuals and institutions doing the studies are highly respected for quality research. They aren't being followed or reported on quackwatch dot com or being investigated by the FDA. In fact, the researchers cited in the studies have real degrees and credible backgrounds. Studies are important only if the researcher and the institution doing the study is creditable. These are..... Thanks, DRZ! Good find!

[jakekell]

A mile is OK, but I know I can do better. My lower back was hurting a bit so I didn't push it. No nodules or lesions on bottoms of feet, though, thank goodness. I think I've relied on pred too much and should be able to get down quite a bit lower. I'd be happy to get down to 10mg. right now, which I was at for quite awhile in the past. But 7.5 or 5mg would make me happier.

I know getting down on the pred is good, but starting to think that I may have to up just a little ugh!

[annekat]

I know getting down on the pred is good, but starting to think that I may have to up just a little ugh! Sometimes that becomes necessary try to feel better and avoid a flare. It is a delicate balancing act. I'm leery, too, of tapering much right now, because I've had flares in the winter before.

[vdub]

About a year ago, they put me back on pred at 5mg/day. I felt immediately better. In essence I was on 10mg/day since I was also on 20mg/day of hydrocortisone, but I don't count the hydrocortisone because it is a replacement rather than a treatment.

I felt so good for 6 months that I was very leary of changing any dosages of my drugs or even the brand of drug I was taking. I didn't even want to change the time of day that I took my drugs for fear of changing something and no longer "feeling great".

However, I knew, eventually, it would all end despite my efforts to keep a steady state. And, it has ended. I felt that I was going downhill as far back as last september and it has continued. I'm not sure what causes it to change, but I'm wondering if my body has a natural up and down cycle to it. Oh well.... 'tis the nature of our situation....

[Pete]

It's hard to stay ahead of this dumb disease...