What causes Wegeners?

[Victoria]

I haven't been here in a while. My husband is the wegs patient. The last 2 years have been very rough as he battled a fungal infection, blastomycosis. He also got to a point of having his leukemia treated with chemo and he is doing much better. My question is..have any of you that have been diagnosed with wegs ever been told what might cause it. I would appreciate any input. Thanks, Victoria

[Sangye]

It's nice to see you, Victoria.

The Wegs specialists seem truly uninterested in finding out what causes Wegs. All the focus is on treating it. Typical for allopathic medicine! None of my MDs has ever even asked about my history of toxic exposure. None have asked about diet, lifestyle or stress. Occasionally one will ask about any history of infection prior to developing Wegs. However, every single one of my holistic doctors has asked about all of these in great detail.

[pberggren1]

My doc asked me about my whole life: diet, lifestyle, toxin exposure, infections, other diseases, stressful times, pets, possible mold, etc.

[Sangye]

That's great, Phil. I wish more MDs did that. Maybe they'd piece it together faster.

[pberggren1]

For some reason my MD is fairly open minded. He is even glad I go see a chiropractor. He seems to be open to holistic ways.

[Dryhill]

I asked my doctor what caused WG and he said that because it is fairly rare there was not enough data to come up with a definate answer. However he added that it was thought it might be lurking in nearly everybody and just needed some form of trigger to come and bite us.

I saw my GP today and she was interested that we had a map showing where we are located and she said that was the sort of research that needed to be done to confirm or rule out environmental causes. But of course proper reserarch would also want to know all about our life styles as well and no one is currently funding that sort of research, there is money to be made from treatment and probably none from sorting out the root cause.

Jim

[Al]

Victoria, I will first try to answer your question as directly as I can; then I want to riff a little on Sangye's post.

No one knows, precisely, what causes WG. Indeed, it may have different causes for different people. In this sense, WG is different than, say, Lyme disease--another autoimmune disease sometimes associated with ANCA, but with a specific bacterial pathogenesis. However, There are likely etiologies, according to the researchers, both for the original trigger, where the immune system learns its dirty habits, and for later flares. Please note that the two triggers may not be the same. The odds-on-favorite for an original trigger is a bacterial infection (E. coli and salmonella, for instance, trick the immune system in just the right way), though viral or fungal infections are also possible. Later flares, however, do not necessarily need any infection, though they are far more prevalent after something infection, like a cold or flu. In fact, anything that riles the immune system (infections, environmental toxins, or even physical trauma, often combined with stress of some kind) could do the trick, once the immune system has WG in its repertoire of responses.

Now, just to be fair, most autoimmune diseases are hard to diagnose, and, in any case, the point of treatment is generally to manage the symptoms rather than get to the bottom of the reasons why. Still, it blows my pred-soaked mind that not every doctor is curious about how the patient got into this mess. (As Sangye notes, holistic doctors tend to be much more so. My naturopath, for example, really digs into medical history and obscure clues. The again, he schedules hour appointments.) And yet, I think the issue is not unique to doctors. It has to do with how we measure "productivity", A salesperson is judged on how many sales are made, not how good the product is for the buyer. An auto mechanic on getting cars quickly back to running--not, usually, on keeping the engine at top performance. A music teacher on how many students win contests and get scholarships--not on how artistic the student becomes. And we all know about attorneys' "billable hours". The point is throughput, more bang for the buck, not a thorough understanding of any particular case; the latter is too costly, as a rule. ("Take two aspirins and call me in the morning" and other pharmaceutical approaches, by the way, are all predicated on the bang-for-the-buck theory: Some cheap pills and five minutes in the office will ease more symptoms per unit of time than a full understanding of the patients' situations.) But lest you think this is only a critique of doctors, I have to include mention of the dynamic from the patient' point of view. As I have observed elsewhere, Many patients do see their doctors more or less like auto mechanics: "Fix me up, Doc. Oh, by the way, I'm going to a party tonight, so I'll need my body back today. And I'm kinda broke this month, so I'll have to put off replacing the head gasket, Just top off the oil."

Please note that I have been talking about what happens in clinics. For researchers, the story is a little different. Researchers get paid to come up with, and test, hypotheses, so they genuinely are interested in how the disease actually works. And, in fact, many researchers do see actual patients in the clinic. (On the other hand, most clinicians never do research, and seem to always be "a little behind: in their reading. Most of what I said in the first paragraph I have gleaned for perusing research articles and conversing with active researchers.

Al

[Victoria]

Thank you all. I appreciate every bit of info given. My husband has been talking with a holistic dr. about a treatment that I wonder if any of you have ever heard of. It is using medical ozone in various ways along with hyperbaric oxygen treatments. I have researched several sites and this is used widely especially in other countries for many diseases. What if anything do any of you know about this. Thanks. Victoria

[Al]

Thank you all. I appreciate every bit of info given. My husband has been talking with a holistic dr. about a treatment that I wonder if any of you have ever heard of. It is using medical ozone in various ways along with hyperbaric oxygen treatments. I have researched several sites and this is used widely especially in other countries for many diseases. What if anything do any of you know about this. Thanks. VictoriaHmmm....Hyperbaric oxygen treatment is common for bends and some embolisms, and coming into prominence for gangrene and necrotizing bacterial infections. Beyond this, I don't think there is a lot of evidence. Theoretically, however, there could be an advantage to HBOT with some kinds of disease where anemia is involved: HBOT could increase the oxygen carrying capacity of hemoglobin. Also, there is a suggestion (not, so far as I can tell actual proof) that HBOT improves stem cell differentiation, which, according to the idea, could help organs recover from damage.

I would personally like to see more research along these lines. Still, there is good reason for caution. Besides the lack of good data, there is the concern that all that new oxygen might not be so great for sufferers of many ailments. Oxygen is a very reactive element, which is both good and bad, depending on a lot of complicated chemistry. And the other worry I have is that such "alternate therapies" are often entered into instead of approved treatments. I understand the sentiment, but WG is not tractable to screwing around. It is an extremely complicated disease that can, and often does, kill. My own naturopath, by the way, insists that I continue standard therapy. His role, as he sees it, is to mitigate problems induced by this treatment.

Al

[Dryhill]

My naturopath, for example, really digs into medical history and obscure clues. The again, he schedules hour appointments.) And yet, I think the issue is not unique to doctors. It has to do with how we measure "productivity", A salesperson is judged on how many sales are made, not how good the product is for the buyer. An auto mechanic on getting cars quickly back to running--not, usually, on keeping the engine at top performance. A music teacher on how many students win contests and get scholarships--not on how artistic the student becomes. And we all know about attorneys' "billable hours". The point is throughput, more bang for the buck, not a thorough understanding of any particular case; the latter is too costly, as a rule. ("Take two aspirins and call me in the morning" and other pharmaceutical approaches, by the way, are all predicated on the bang-for-the-buck theory: Some cheap pills and five minutes in the office will ease more symptoms per unit of time than a full understanding of the patients' situations.) Al

Al, I agree with you. My osteopath charges me £25 for a session, sometimes that is only 20 minutes another time it might be 40 minutes, but my NHS GP is only allowed seven and a half minutes, so I generally book a double appointment (I can even then find time to say "hello doctor how are you today" and "thank you"). Luckily hospital consultants are allowed a lot longer.

Jim

[mishb]

Our footballers use the hyperbaric oxygen chamber for sporting injuries.
They say it helps to heal torn hamstrings, help to speed recovery for sprains and strains, swollen ankles, bruising etc.
They can get back on to the field in half the normal recovery time.

[MCC]

As I've said before I find it madness that doctors are not generally interested in the reasons why.

My money's on the toxins, which is why I now try to cut down chemicals in my life - where I can - simple things like deodrants, shampoo etc. I also eat 60% raw most days.

[Sangye]

I agree with you, MCC.

[drz]

I read a lot of info that blame our genetically modified food as one of the culprits for many of our health problems. Most industrialized countries don't seem to allow it but it predominates our food supply in USA and Canada. Why are many countries so opposed to it if it is supposedly so good? I think part of the great increase for wanting organic foods is to avoid the GMO stuff and all the pesticides used on our food. I try buy local or organic when I can even though it often costs more for imported organic stuff.

[Dryhill]

I read a lot of info that blame our genetically modified food as one of the culprits for many of our health problems. Most industrialized countries don't seem to allow it but it predominates our food supply in USA and Canada. Why are many countries so opposed to it if it is supposedly so good? I think part of the great increase for wanting organic foods is to avoid the GMO stuff and all the pesticides used on our food. I try buy local or organic when I can even though it often costs more for imported organic stuff.

Basically it is banned here in the UK and Europe (some small scale test crops are allowed to be grown but not to reach the food chain) because we the people objected so strongly governments had no option but to do as we said, after all they are only our representatives not our masters. Perhaps American and Canadian we the people are not so vocal or of course perhaps the government is your Master?

In the UK political parties are limited to how much they can advertise themselves before an election and there are attempts being made to limit how much business and unions can fund the parties

Jim

[Al]

As I've said before I find it madness that doctors are not generally interested in the reasons why.

My money's on the toxins, which is why I now try to cut down chemicals in my life - where I can - simple things like deodrants, shampoo etc. I also eat 60% raw most days.

I know there are many who blame toxins. Indeed, I go along with this point--at least for flares. And.I fully believe that many environmental factors wreak havoc with the immune system, leading, indirectly, to an increased risk of all kinds of problems. However, I do not believe that toxins directly "cause" WG in the initial stages. Here is my reasoning. While many toxins are chemically complex and can elicit an immune reasponse, they do not, by themselves, reproduce in the body. (Many bacteria, however, produce their own exceedingly nasty toxins.) Thus, it it is unlikely for the immune system to learn a new, very complicated response from their presence. On the other hand, immune systems are very good at coming up with novel responses to rapidly reproducing life- or quasi-life forms: Bacteria, viruses, and fungi. The immune processes involved with WG do not come standard with the "make-a-human" kit; they must be specifically learned. However, once learned, they can easily be employed to deal with any perceived threat, even if that threat is incorrectly identified.

I'm not sure exactly what you meant by "raw" foods. Uncooked, perhaps? Good idea--probably, though I recommend caution: Raw foods can be fertile ground for various microbes. Not all microbes are "bad", but most are capable of inciting the immune system. And environmental chemicals are often found on such foods; these are usually defused by cooking. So be diligent!


I read a lot of info that blame our genetically modified food as one of the culprits for many of our health problems. Most industrialized countries don't seem to allow it but it predominates our food supply in USA and Canada. Why are many countries so opposed to it if it is supposedly so good? I think part of the great increase for wanting organic foods is to avoid the GMO stuff and all the pesticides used on our food. I try buy local or organic when I can even though it often costs more for imported organic stuff.I also go "organic" so far as possible. But three notes of caution: First, it is not easy to know how reputable the source is, and two, in any case, "organic" has too many definitions to be a complete comfort to me. Three, what you can usually (but not always) trust is that organic foods are produced without manufactured chemical fertilizers, pesticides, and such. However, they do allow for natural fertilizers, like manure. Manure is, or course, both natural and organic, and yet the designation does not preclude toxicity. (Remember the recent European epidemic of E. coli O104:H4? The culprit was from organic sprouts from a presumed reputable producer.) Bacteria found in manure of many farm animals can be nasty to humans. Again, the point is to be alert--and careful!

Al

[Al]

....In the UK political parties are limited to how much they can advertise themselves before an election and there are attempts being made to limit how much business and unions can fund the parties


Yeah. Now I need to shut up.

Al

[me2]

Which came first , the sicken or the Weg?

I'm on board for the toxic theory because I basically bathed in the stuff as a young man for three years before getting ill. It was legal back then to do that to young people in factories. I was exposed to industrial solvents. I like the theory that it caused MY weg because my immune system had not evolved over thousands of years to deal with these chemicals.
That being said , it seems most likely that there are many 'causes' of weg. My scientist doc votes for virus. He has been right a lot in the thirty plus years I've known him. The question is , why do some people exposed to the 'cause' get weg and the others don't.

It is always amazing to me to see the number of people smoking. It takes a very large number of smokers and a very large epidemiological study, over many years, to connect smoking to heart attack, cancer , emphazema (sp?) etc. One cause, many illnesses.

Remember how long and hard the fight was to get the connection accepted even after gazillions of dollars spent on studies that proved the connection. So what chance do we have with our small numbers and very little study? I dunno, I'm hoping to be surprised.

Two different naturopaths told me to stop chemo way back when even knowing my diagnosis. I did and almost died. I guess Hallmark doesn't have a card for doing that to someone because I never heard from them again. One kept sending me a final bill that I used to look at laying on the couch because I could no longer walk- literally. My now 215 lb frame was reduced to 122.

There was no internet back then, I had no idea what I was dealing with. My doc back then didn't explain it to me ... because he had to get on to the next patient. When I quit seeing him and quit taking Cytoxin I didn't hear from him either. Did I stop treatment, was I dead? He didn't care.

My regular doc now may not spend a lot time with me but on the other hand his treatments have kept me alive. With wg I score allopaths '1', naturopaths '0'.

That was many years ago. Nowadays I do what y'all are talking about. Regular doc for the disease, natural as possible for my health and reducing the possiblity of relapse. I think its pretty safe to assume that diet and reduced exposure ( to all the stuff you mentioned) help to prevent relapse and keep you in better shape to handle it if you do. My 'health' has kept me alive through some terrible disease and drug episodes. The natural guys are great at this.

There are still people on the natural side that say they can treat wg. This makes me angry , as you can tell. So far there is no evidence that I know of that wg can be treated by natural means. Philisophically might that not suggest an unnatural cause? I dunno.

Our unnatural diet and toxins is responsible for a very high percentage of the diseases we westerners suffer from , so its something I think about.

I'm not trying to be arguementative but show a flip side (flip should sound funny, but I come off sounding kind of angry huh? ha)

As Al points out this illness is not to be trifled with.

Dryhill please refrain from saying things that are true about our politics. We are in denial right now and don't want to be disturbed.

[Al]

Which came first , the sicken or the Weg?....Good points, Kirk. I would just add that the microbe theory and the toxin theory are not mutually exclusive. Indeed, most researchers would say, I am sure, that complex diseases are always a combination of genetics, personal history and environmental context, and luck. And keep in mind that they can be interactive. For instance, it is well known that certain viruses, called retro-viruses, can make changes in a cell's DNA--in its genetic code. Also not that, from a medical point of view, both microbes and toxins are considered environmental factors. In any case, I am sympathetic with the industrial chemical issue: As i have noted before, my father was a factory cabinet-maker before OSHA was around. He died at age 56 from bladder cancer. Still, I believe, for reasons given earlier, that, in a direct sense, microbes are the most likely culprits as to establishment of the immune response in WG (distinguished from re-introduction of the response in later flares). But in a real sense, it hardly matters, since those three factors--genetics, environment, and luck--are so highly interactive.

Al

[vdub]

she was interested that we had a map showing where we are located and she said that was the sort of research that needed to be done to confirm or rule out environmental causes
Speaking of which, I should give the map another kick WegMap (http://www.zeemaps.com/map?group=242717)
New folks might want to add their pin....

[Sangye]

In the UK political parties are limited to how much they can advertise themselves before an election and there are attempts being made to limit how much business and unions can fund the parties

Jim

Yup. Imma shut up, too.

[Victoria]

I appreciate all the info I have been reading on wegs. I had never heard of this disease till I met my husband in 1999. He was diagnosed with this in 1985 and I have been consumed with trying to learn of it. His symptoms started as severe joint pain and low grade fevers. He said the more he exerted himself the higher his fever got. He farmed and has always told the drs. it wasn't long this started after he had sprayed 50 acres of soy beans with pesticides. As he explained his story to me the wegs was initially in his kidneys, found with a biopsy. He was treated with cytoxin, pred, bactrim. He said after several months and remission he was taken off meds completely. Stayed well until a flare in 1994, this time his lungs were full of nodules. He was then put on methotrexate, etc. Remission again until 2007. The dr. who had originally diagnose and and treated him all these years passed away and then he was referred to one who was "supposedly' an expert in wegs and had practiced at Mayo. Wrong move. That dr. took him off all meds an within a month he was in kidney failure. Luckily he got to a nephrologist that got him back on track, saved his kidneys, and we now know he won't do that ever again. 27 years after being diagnosed he has survived with the sinus involvement, hearing loss, respiratory failure, kidney failure, and the past 2 years of this dreadful fungal lung infection, blastomycosis, now better but still on sporanox for that with awful side effects, and finding out he had a type of leukemia that he just recently took chemo for. He's recovering from that now. We are very thankful, still hungry for knowledge, and will continue to follow all of you who have wegs. He said the dr. who first diagnosed him came in the hospital room and said "I have bad news and some good news"...you have wegeners granulomatosis and have about 22 months to live, but with treatment it can be managed. He said "when do I start". Please keep any new findings on this dreaded disease here for all to learn of. This site is so much help. Thanks to all, Victoria

[Al]

Thanks for sharing your husband's story, Victoria. You are a saint for dealing with his disease in such an involved way. We on the forum will give you any advice and assistance we possibly can.

Those on farms have a particular risk for many health problems because of working daily with known carcinogens and other scary chemicals. For point of reference, I am pretty sure that the origin of my situation was a nasty intestinal infection, possibly of the E. Coli kind (it was never diagnosed, but the symptoms lead in that direction). I recovered from this episode, but the kidneys were badly damaged. Other than for having my blood pressure run amok, however, my major symptoms did not show up until years later.

27 years is a long time. One of our members, Kirk (me2), in also a long termer (30 years or so). Weggies, and their families, come in many varieties. But we also have certain things in common. You are always welcome here.

Al

[Sangye]

Nice to meet you, Victoria. It's rare that we get to meet anyone who was dx'ed so long ago. I'm happy to hear how long your husband's remissions have been. That gives a lot of us hope! The past couple years sound particularly rough-- blastomycosis and leukemia, yikes. Hope he's doing better.

[mishb]

I guess for me, the WG was bought on by stress (anxiety really) and possibly mould spores.

2009 was a big year for me.
A car accident that could have been very serious indeed (double semi truck changed lanes onto my little car and squished it against freeway barrier)
I still get anxious, driving beside a truck or even just driving on that part of the freeway.
A mammogram found some breast lumps which was only two days before my dad passed away..... got a massive sinus infection the night of his funeral.
We were also renovating our main bathroom and the mould was everywhere behind the walls.

I have never had any flu vaccinations, so that's not one.
My husband is a commercial cleaner and therefore has many containers of cleaning chemicals but I doubt chemicals is a trigger for me, since me and cleaning don't go hand in hand. :razz: I can't recall any time that I have touched, (I was going to say his equipment :blushing: ), his cleaning chemicals.

[Sangye]

You don't need to handle the chemicals to be exposed. People who work with them have chemicals all over their skin and clothing. It spreads everywhere-- on other people, furniture, cars, pets, etc.... I would add chemical exposure into the pile of what caused your Wegs. All the other factors are important as well.

[Al]

I guess for me, the WG was bought on by stress (anxiety really) and possibly mould spores.

2009 was a big year for me.
A car accident that could have been very serious indeed (double semi truck changed lanes onto my little car and squished it against freeway barrier)
I still get anxious, driving beside a truck or even just driving on that part of the freeway....Michelle, I'll bet you get anxious! That sort of thing can ruin your whole day! It is worth noting that physical trauma can also trigger a flare (it can cause the same kind of cytokine storm as infections and nasty environmental chemicals. And stress in a known exacerbator of immune system anomalies.

Al

[Al]

You don't need to handle the chemicals to be exposed. People who work with them have chemicals all over their skin and clothing. It spreads everywhere-- on other people, furniture, cars, pets, etc.... I would add chemical exposure into the pile of what caused your Wegs. All the other factors are important as well.Yes. As a response to Michelle, I would add that it is hard to know what chemicals one may be exposed to, since most are far from obvious. Just being around traffic or filling up your gas tank can be bad if you are sensitive to those things. Then there is laundry detergent, shampoo, exposure to all kinds of plastics (which are ubiquitous, though very few have been regulated or even studied for toxicity), paints and glues, the "new car smell", and all kinds of other things. Oh, and don't forget various radiation (even the non-ionizing kinds might be dodgy, since no one really knows how bodies react to them). Also, some chemicals that are normally harmless may be less so in modern concentrations, like salt and certain heavy metals (for those living close to general aviation airports, lead can be a serious issue), Then there is what seems to me suspect in all cases: Vegemite.

Al

[Al]

Oh, and one more thing I keep forgetting to mention on this subject: Hypersensitivities of any kind can trigger flares. Classical allergies are mediated by IgE (Immunoglobulin E) antibodies; Hypersensitivities are mediated by IgG (most ANCA are IgG). These are often hard to track down, but can be rasty indeed.

Al

[mishb]

Yes. As a response to Michelle, I would add that it is hard to know what chemicals one may be exposed to, since most are far from obvious. Just being around traffic or filling up your gas tank can be bad if you are sensitive to those things. Then there is laundry detergent, shampoo, exposure to all kinds of plastics (which are ubiquitous, though very few have been regulated or even studied for toxicity), paints and glues, the "new car smell", and all kinds of other things. Oh, and don't forget various radiation (even the non-ionizing kinds might be dodgy, since no one really knows how bodies react to them). Also, some chemicals that are normally harmless may be less so in modern concentrations, like salt and certain heavy metals (for those living close to general aviation airports, lead can be a serious issue), Then there is what seems to me suspect in all cases: Vegemite.

Al

Okay, I get your point, maybe it was my new car........my new car is trying to kill me.
I picked up this said new car on the day my dad died, four days before the massive sinus infection day.
I let my husband do all of the other stuff, laundry, painting, petrol in cars ........ so it can't be that.

........alright already.......it's the Vegemite. There I said it.......it's the Vegemite :flapper:

AHHH That feels better.

(Any other Aussies on here???!!.......help me out ..........gotta protect the Vegemite)