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. Victoria

Hmmm....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