What caused your Wegeners?

[Sangye]

Okay, it's very good to get these tests done. I forget what the first test is called. I jokingly refer to it as the "foot-long flexible nasal scope." The second test is a bronchoscopy.

If you're still coughing and the chest x-ray looks okay, ask for a CT scan. X-rays aren't always accurate with Wegs.

[JanW]

My ENT calls the first test a partial bronchoscope (that's how it's coded in insurance, also). He can see down through the first couple of tracheal rings with it, as long as you don't mind feeling like you are being choked with a knife (sorry, but it's very quick). When I went to a previous ENT, he wouldn't do it all the way because I was gagging too hard, but really, that's a reflex and you can't help that...my new guy (who is older to the profession by at least 20 years, I'd figure, and a WG expert), just plows through, gets his pictures, and doesn't have to schedule a CT scan of your throat.

[Sangye]

Jan, does Dr Lebovics see past the larynx with a partial bronchoscope?

[JanW]

Yes. He had a pretty good shot of my trachea as well...enough to see there was scarring on the first two rings but not the third. If there was scarring on the third or below it would have required (for him) a thoracic surgeon as well as an ENT, because that's how he performs those more extensive surgeries.

[MCC]

Hi
A couple of people have asked me recently if stress could cause or make Wegeners worse? I didn't think so at first, but I've started reading a book on what stress can do to the body.

I know it's all theories still but what do you guys think?

[elephant]

Stress effects all of us differently. I think we have a genetic disposition and then stress and other things like chemicals and such trigger it. Just my theory.

[Sangye]

I believe the link between stress and dysregulation of the immune system is easy to establish using biochemistry and physiology. This article gives a great summary of how that happens, and also explains how pred suppresses the immune system.
Stress & The Immune System

I think there are a lot of factors involved that determine how much damage stress does. Unless one has attained mastery over one's reactions (eg meditation masters) and is able to stop the chemical cascade from occurring, I have no doubt that chronic stress is at the root of many disorders, including our stinkin' pal Wegs.

[MCC]

Thanks Sangye.

This last paragraph in the article you posted makes me think Wegeners is the opposite of what they are talking about though:

Stress negatively affects prostaglandin production. Cortisol, produced by the adrenal glands when under stress, suppresses prostaglandin production. According to Dr. Barry Sears, “if you are overproducing corticosteroids, especially cortisol, you will bring all eicosanoid (prostaglandin) synthesis to a crashing halt – including the shut down of the immune system.”

because our immune systems have not shut down, they've gone into overdrive- and what the steroids are doing is shutting our immune systems down?

[Sangye]

Sometimes in holistic medicine people say "shutdown" of the immune system instead of the more accurate "dysregulation." In holistic terms, autoimmune diseases are not an overdrive of the immune system. They occur when an immune system loses its specificity and normal regulatory mechanisms. So basically the immune response is all over the place.

MDs acknowledge that active Wegs in itself makes one immune-compromised. And at the same time the immune system is attacking one's own body. This contradictory activity reflects how the immune system is at times overreacting and wrongly reacting. It's like shooting a gun in the air-- you don't know where the bullets will land.

Immunosuppressants control Wegs by knocking out both functions-- overreacting and wrongly reacting. If Wegs were not deadly, holistic medicine would treat it by regulating the immune system-- not suppressing or boosting it.

I don't know if this explanation makes sense! My mind is pretty muddled-- gotta get up early for more ritux tomorrow.

[MCC]

Thank you for explaining it, yes it does make sense!

Are you a holistic doctor Sangye? Sorry, I don't know what most of you do/did away from talking about Wegeners. It would be nice to have a thread to get to know you all.