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MCC
02-04-2010, 06:52 AM
Having only been recently diagnosed, I am still learning about Wegener's :) , but I have been told that no one really knows what causes it to start.

My doctor said I may have had something like a cold and my immune system for some reason went into overdrive.

I was wondering if you have theories/suspect something that brought your wegener's on?

elephant
02-04-2010, 07:03 AM
I think about this everyday and too many variable, plus I was very young around 12 when I started with wg symptoms. Vaccines? bacteria? virus?

Jack
02-04-2010, 07:12 AM
I like to think it is probably a very sensitive immune system triggered by an infection.
Just another half baked theory I know! I've never read anything claiming to know the true cause.

MCC
02-04-2010, 07:33 AM
When I was in India at the end of 2008 my boyfriend and I both got a boil- he got it first and his got very badly infected. I was reluctant to go to a doctor so I diagnosed it myself as having been caused by staph and found what antibiotics I needed on the internet. Now I wonder if the staph (if that's what it was) or the antibiotics triggered the wegener's, although it was some time after I became ill.

I remember this incident particularly because I've never usually been an 'ill' person.

Jack
02-04-2010, 07:48 AM
I've never usually been an 'ill' person.
That is what most people on here say. Hence my "sensitive immune system" theory. :)

Sangye
02-04-2010, 08:27 AM
I was never an ill person before, either. I wouldn't go too far down the road with the boil worries, Mandy. The vast majority of boils are staph and are easily treated by antibiotics. If you had such an infection and the antibiotic didn't work, it would have worsened. From a holistic perspective, antibiotics are powerful drugs, but one round of them isn't enough to cause an immune system to go haywire.

In holistic medicine the cause for autoimmune diseases is prolonged stress to the immune system. Many of us had very strong immune systems and didn't even notice the stress (ie we didn't get sick often). Stress is due to emotional stress, pollutants, vaccines, food sensitivities, processed foods, drugs, nutrient deficiencies, etc....

elephant
02-04-2010, 09:55 AM
It is so hard to pinpoint what caused the WG. I still think there is genetic component re: autoimmune disease's that run in families. Like Sangye stated above ( don't know how to copy and paste...shhh) stress, pollutants...ect...our immune system can't handle it.

JanW
02-04-2010, 11:45 AM
I don't even remember being sick, but I do remember waking up one morning and realizing that I couldn't breathe so well. That's probably when the granulomas started forming on my subglottis (2005). That having been said, I would never have known if I hadn't gone to the doctor because of a sinus infection and he looked down my throat. The next bad thing that happened was a sudden onset of saddle nose (mine flattened in literally a week or less), but that didn't happen until this summer. I never noticed it was soft, it wasn't painful or anything. I have no other involvement so far -- just nose and throat.

Luce
02-05-2010, 07:13 AM
I was told mine was caused by a throat infection which triggered off the WG, which apparently I was just pre-disposed to developing. What that's supposed to mean I don't know!

jeriorleans
02-05-2010, 01:04 PM
A.J. got a bad cold right before he started having all of his problems. He also had recently had his immunizations. Has there been any studies on what could cause Wegeners? Prior drug use, smoking, alchololism of the parents? My ex-husband had a drug problem and it frequently crosses my mind that if he was on drugs while I got pregnant could it have caused these problems.

Jack
02-05-2010, 06:10 PM
Lots of research into the subject has been done, but no answers found yet, just a lot of theories. Pick the one you like best! ;)

Kimbangu
02-06-2010, 10:06 AM
I was diagnosed in Nov 2009 and initially I was fascinated to know "what caused it". The only true answer I think is that "Nobody Knows What Causes It. " I was convinced that in my case it must have been caused either by stress, or AFRICA. One thing stuck in my mind from my first visit to Africa- a South African nurse telling me that " the first time a European visits Africa, your Auto Immune system will be in overdrive". Having since spent hundreds of hours reading about this awful, sneaky disease I now, personally feel that a person is BORN with it inside them- (The predisposition for their auto immune system to go into overdrive) . All it need is for something - and you will never know what it was- to set it off. You just need to look at all the different life stories on this site- there is no common thread to any of the stories. I spent a lot of time agonising over HOW I caught it, but am now resigned to accepting that the potential to develop WG has always been there..... I quite like Jack's theory in other words......

jeriorleans
02-09-2010, 01:29 PM
However, looking at the site, it doesn't seem like there are as many people in the south.

GARYfromBOSTON
02-09-2010, 08:46 PM
I like to think it is probably a very sensitive immune system triggered by an infection.
Just another half baked theory I know! I've never read anything claiming to know the true cause.

My Weg's doc throws around "infections and/or antiboitics" as the likely cause. Even said these were the cause to a bunch of Harvard med student with no caveats. However, this is not scientifically proven.

Kimbangu
02-10-2010, 07:18 AM
The rheumatologist I saw said that they see Wegener's predominately in Rural populations, and that most of their new diagnoses are Sept/Oct/Nov time, therefore it may be related to some plant or other!?

Nope, Gary we're in it for the "long haul". I can't spend too much time worrying about the cause. I mean, ( looking at this site), it would appear that Wegener's is restricted to English- speaking people with access to the internet? <g>

elephant
02-10-2010, 08:37 AM
It's like finding a needle in the hay stack! Who is going to be the lucky person to find that darn stubborn WG needle???

MCC
02-10-2010, 09:41 AM
I don't worry about the cause, after all I can't change it, but I do wonder if the antibiotics I took in India did something to my immune system so I brought it upon myself....but if so, again I can't change it now!

Sangye
02-10-2010, 09:43 AM
It's like finding a needle in the hay stack! Who is going to be the lucky person to find that darn stubborn WG needle???
Whoever does...please, for the love of all that is good and decent, PULL IT OUT.

Doug
02-12-2010, 03:29 AM
The rheumatologist I saw said that they see Wegener's predominately in Rural populations, and that most of their new diagnoses are Sept/Oct/Nov time, therefore it may be related to some plant or other!?

Nope, Gary we're in it for the "long haul". I can't spend too much time worrying about the cause. I mean, ( looking at this site), it would appear that Wegener's is restricted to English- speaking people with access to the internet? <g>

Kimbangu, Kimbangu, Kimbangu! I LOL'ed in violation of my own rule not to contribute to off topic humor by encouraging it in myself or others!

jola57
02-12-2010, 04:02 PM
Kimbangu, you bad boy look what you did to Dougie, he LOL'ed himself

Doug
02-13-2010, 11:40 AM
Kimbangu, you bad boy look what you did to Dougie, he LOL'ed himself

It was not a pretty sight, either.

elephant
02-13-2010, 01:32 PM
I like the kitty cat picture. Looks like the lion is hungry like the wolf!

Kimbangu
02-13-2010, 11:31 PM
I know,I know, I must remember to be more SERIOUS in future. I should stick to lurking. I'm here to learn. But this is a great forum (and I just love the way the threads lurch disturbingly "off- topic" after only a page or two.......)

Curiously , I was on Doxycycline ( antibiotic) as a malaria prophylaxis for 4 years before I was diagnosed with WG. I was assured the antibiotic could not have been the cause. But how can they say what WASN'T the cause when they don't know what WAS the cause? - It's kinda boring. I hate WG.....!

Sangye
02-14-2010, 02:22 AM
Kimbangu, please don't get serious or just be a lurker! I enjoy your posts. The off-topic straying is natural. We can catch ourselves and start a new thread when necessary. It doesn't mean we can't still have relaxed "conversations."

I think an antibiotic (or any drug) used long-term causes such imbalance in the body that it can produce disease. Can it produce Wegs? Sure, why not? Just because we're psychologically accustomed to the idea of antibiotics and other drugs, doesn't mean we are physiologically accustomed. The body is still going "WHAT???" when we add things like doxy.

gwenllian111
02-17-2010, 08:22 AM
My mum tortured herself for years and years, and maybe still does, as she thought my WG was caused by me using her plant pesticide spray one day when I was 13 years old. The other theory was the MMR vaccine being given to me twice, by accident. My mum blames herself for me having it, but it's rediculous. These things just happen, and maybe we're never meant to know why.

jola57
02-17-2010, 02:44 PM
There are as many theories as there are wegs patients, until more tests are done we just don't know

LilyPony
02-20-2010, 03:47 AM
I got a nasty cold, spent an afternoon in bed feeling terrible through the next morning. When I got up in the morning, my eye was swollen shut. Cold went away but it took hefty prednisone to get eye back to normal. About 2 years of dr shopping before finally getting one to agree to a biopsy which led to diagnosis. I'm convinced the cold triggered it but was probably predisposed to an autoimmune disorder since my mom had RA and fibromyalgia. Every flare up is triggered by a cold (runny nose and/or sore throat) and it's very tough to avoid illness with 1 and 2 year olds in daycare.

Sangye
02-20-2010, 06:39 AM
Hi LilyPony,
Wow, I don't know how you do it. Wegs and 2 toddlers??!! I can't imagine staying free of infections with exposure like you have, much less how you can find the energy and strength to parent small children.

What meds are you on? What other areas are involved? Oh, and BTW-- welcome to the group! :D

JanW
02-20-2010, 06:48 AM
I have tried to think and think back to 2005 when I think my SS first started and I can't remember anything out of the ordinary in terms of getting sick (other than feeling short of breath, of course). We had a flood in our basement, and I always attributed the "asthma" to that. I believe I started flaring last winter with chronic sinus headaches and nosebleeds even months after I stopped getting them (multiple doses of pred later) I was having crusting and nosebleeds. Then the bridge of my nose suddenly and rapidly caved in.

LilyPony
02-20-2010, 06:51 AM
Hi LilyPony,
Wow, I don't know how you do it. Wegs and 2 toddlers??!! I can't imagine staying free of infections with exposure like you have, much less how you can find the energy and strength to parent small children.

What meds are you on? What other areas are involved? Oh, and BTW-- welcome to the group! :D

Oh we just hang in there! My case is incredibly mild and slow to progress, nothing like what many of you deal with each day. I do get tired more easily than I should and get winded if I exert myself. I just HAVE to find the strength and energy to be the best parent I can be.
Thanks for the welcome, meant to introduce myself but havent' had time and just jumped in and started babbling.

Sangye
02-20-2010, 06:58 AM
LOL-- babble away! :D

LilyPony
02-20-2010, 06:58 AM
Hi LilyPony,
Wow, I don't know how you do it. Wegs and 2 toddlers??!! I can't imagine staying free of infections with exposure like you have, much less how you can find the energy and strength to parent small children.

What meds are you on? What other areas are involved? Oh, and BTW-- welcome to the group! :D

Right, got sidetracked there. The only meds that I'm on is Bactrim and prednisone when I flare up. I never got it totally under control in my opinion due to not being able to keep a rheumatologist. I saw a weg's researcher / head of rheum dept at a university hospital once, then my follow up the next month was rescheduled repeatedly until I got a letter that he'd retired. My appointment with another the dr was 2 hours late, they said they didn't know where he was and so I left. A third moved out of state before my appointment. I've been seeing allergists and an ENT for the coughing/congestion and it was just a few days ago that the connection was made that it was all related to the weg's. I see the ENT again in two weeks who is going to consult with a wegs specialist to figure out what to do now. They're concerned that there is probably some sinus and lung infection which is frustrating that my GP just kept blindly refilling the Bactrim and I had no monitoring.

Sangye
02-20-2010, 07:08 AM
I suggest you try (sigh) yet again to get a Wegs rheumy involved, though I can't believe what you've been through trying to get one! It's best for you to see a Wegs doc yourself rather than going through a 3rd person. Too much gets lost in the translation and you have no way to ask questions. If your ENT works with a Wegs doc, you still don't have someone overseeing everything. Like you've experienced, things fall through the cracks.

I've had numerous "lung infections" that never resolved with antibiotics and that turned out to be lung hemorrhaging. Many others on here say the same about unresolving sinus infections.

JanW
02-20-2010, 07:15 AM
The way it was described to me, LilyPony, is that my rheumo said, "I am the team leader. Everyone else should go through me." My ENT says, "I'm the plumber -- I'm working on my area, but I'm taking my cues on your disease from Dr. Yee." I think that if I had happened on to my ENT first (which could have happened, he's on the Vasculitis Foundation's site), he would still have made me go see a rhemo before doing my surgery.

One huge reason to see a rheumy is that you want to have regular bloodwork done which may provide clues to the progress of your disease, and can at least certainly alert you to times when your inflammation is higher. Then too, rheumos are used to working with pred (or any other immunosuppressents) very specifically and can try to keep you on the smallest possible dosage to control your symptoms, doing the least amont of damage. I was on fairly moderate amounts of inhaled steroids for what they thought was asthma, and I have already weakened my bones (I'm only 44 and African-American, so should have had stronger bones to begin with). I don't think a rheumotologist would have been so cavalier about adding steroids any time I had a cold, etc. So one of the things my rheumo needs me to do is continue getting bone density scans on a regular basis.

Jack
02-20-2010, 07:30 AM
LilyPony - If you have Wegener's there is a very good chance that the symptoms of sinus and lung infection are nothing of the sort, but are a result of this condition. If this is the case, then steroids alone will not control it and it is urgent that you see someone who knows what they are doing before more serious damage occurs. Please see a rhumatologist with Wegener's experience as soon as you can.

JanW
02-20-2010, 07:34 AM
Jack is right -- one thing that have been shown to never work long term is steroids without immunosuppressants. Considering that I was on them for five years with my "asthma" they didn't stop my throad from accumulating scar tissue or my the cartilage in my nose from collasping. I'm healthy otherwise, but the disease was still doing very silent damage.

Sangye
02-20-2010, 09:12 AM
Even though my ENT sees all the Weggies at JHU, he still would never adjust my meds, make treatment recommendations or even comment on how active the disease is. He said "I just take orders from Dr Seo (my Wegs rheumy)."

Last year when my lungs were hemorrhaging it only looked like pneumonia at first. I paged the rheumy on call at JH-- a non-Wegs doc. He said to stop taking the Cellcept and come to the ER. I only missed two doses but the Wegs went wild. When I saw my Wegs doc he said, "Don't ever stop the Cellcept unless I myself tell you to." I asked "What if I'm on fire?" and he replied, "Take the Cellcept and then hose yourself off." :D

elephant
02-20-2010, 09:20 AM
Sangye when the rheumy thought you had pneumonia were you coughing up yellow? congestion? chest pain? short of breath? Just coughing with out junk? Or was it the chest x-ray to confirm it?

Sangye
02-20-2010, 09:32 AM
Even when I've had pneumonia for real in the past, I never cough up nasty stuff. With both pneumonia and with lung hemorrhaging, I get very weak (as in hard to lift my arms), lots of chills/sweats, tight chest, short of breath and often have chest pain.

My chest x-rays usually look fairly normal-- only slight cloudiness that usually gets called "infiltrates consistent with mild atypical pneumonia." The CTs show the real mess, though. The ER docs are usually shocked to see the CT, since by then they've completely chalked it up to a minor virus.

LilyPony
02-20-2010, 11:14 AM
Hey everybody, thanks so much for you insight and helpful information. I have realized just how important it is to have a relationship with a specialist. I will do a more complete introduction tonight after kids are off to bed. This whole thing was just downplayed to me after diagnosis and I (nor my GP) didn't realize how important monitoring would be. The first rheum actually told me not to listen to anything I read online because it didn't apply to me. It was contained in my lacrimal area and would never be a problem as long as I stayed on the Bactrim. Stupid me, I know.

An ordinary rheum in my area that accepts my insurance has a wait of 6-9 months for a new patient. The only rheum experts that have been located over the last few days are researchers who aren't seeing patients. I just started with the ENT a few weeks ago without an inkling that it might be related to the wegs. He is working very diligently to get me in with the appropriate person as quickly as possible and in the meantime he is running bloodwork, scheduled chest xray next week, and in touch with one of the researchers who will advise him while I wait to get in with a rheum. He's hoping to get me seen by a rheum within 2-3 months.

elephant
02-20-2010, 12:52 PM
Where are you from LilyPony?

Sangye
02-20-2010, 12:58 PM
LilyPony, don't call yourself stupid because you didn't know. Your doctor should have that title!

It would help to know where you are. We can help you find a Wegs doc if we have some idea. 2-3 months is a long time to wait. You can usually get in within 6 weeks to the major centers.

LilyPony
02-22-2010, 03:37 AM
LilyPony, don't call yourself stupid because you didn't know. Your doctor should have that title!

It would help to know where you are. We can help you find a Wegs doc if we have some idea. 2-3 months is a long time to wait. You can usually get in within 6 weeks to the major centers.

I am near Raleigh NC. My ENT found someone at Duke University in Durham NC that does consultations. There was somebody else in the area who didn't accept my insurance. I plan to contact the vasc foundatn Monday and hope to get someone with experience.

I think the single most frustrating thing was my original rhem was a wegs researcher. He said he was one of the best int he country and I was lucky I lived so close. Sure wish I remember his name but he was affiliated with UNC but retired before I got a follow up. He kind of laughed off the diagnosis saying that it would never be an issue because I was far too young (late 20's at diagnosis) and a woman. Clearly all ages and women can get it as I've seen on here. He said that I seem to have invented my own kind of vasculitis but wegs was the closest fit. But now I've been getting winded easily for a few years despite attempts to be fit. I chalked that up to two back-to-back pregnancies and just figured never got quite strong again. The the ongoing coughing and sinus problems, the tendency for my eye wegs to flare up every time I get a cold... all coming together now!

JanW
02-22-2010, 04:11 AM
My pulmo always said that more men get the disease than women and I never understood where she got that from because even a casual glance at internet sources shows that's not the case. I always thought, however, that it was much more likely to be present in people my age (40s and above) but unfortunately, having come to this site and the Facebook site, I can see that there are many, many young people and teens affilcted with it also.

Definitely watch the wheezing and the windedness, Lily...that's exactly what my stenosis is like and I've got sinus involvement also. (if you want to hear what stenosis sounds like, vs. asthma, I know there are sources on the internet).

Sangye
02-22-2010, 06:21 AM
LilyPony, I just can't believe that anyone who calls himself a Wegs specialist would say that having Wegs would never be an issue, no matter what age or gender. Wegs is definitely not limited to middle aged people. We have a lot of members on here in their twenties and even some teens. I know of several children under age 10, as well.

I can see them saying you had an unusual presentation, but that doesn't make it less dangerous.

Jan, I think the pulmo's data is out of date. Men are only slightly more likely to get Wegs. It's almost 50-50.

JanW
02-22-2010, 06:31 AM
That's what I meant Sangye -- I'm not sure that it was ever less than 50-50. That's why I never understood where she was getting that from. Turned out that she had never seen WG at all.

Sangye
02-22-2010, 06:54 AM
Gotta love the docs who've only seen Wegs in a textbook.... I think years ago it was predominantly men who got Wegs, and that the average onset was in seniors. When I see my Wegs doc next time, I'm going to ask him if all these cases of Wegs in teens and twenty-somethings are a new trend. Sure seems like it.

Jack
02-22-2010, 07:07 AM
I agree Sangye. I was diagnosed in my very early 30s and was considered to be young for such a diagnosis.

Sangye
02-22-2010, 07:14 AM
How are you feeling, Jack? Any better?

elephant
02-22-2010, 07:21 AM
Back 30 years ago I had Wegeners disease and the Rhuematologist ( Children's Memorial Hospital ) in Chicago....didn't diagnosis it. I had kidney damage...and what they thought was pnuemonia... and arthritis which started two years before the kidney damage....I was lucky that they gave me prednisone and another drug ( I think it was cytoxan) they mentioned my hair falling out. So kids get it...it just gets diagnosed wrong. :)

elephant
02-22-2010, 07:23 AM
Lilypony I live in SC and go to the Cleveland Clinic and see Dr Carol Langford. She is under the Vasculitis Foundation list. I like her and so easy going and on top of things. You like her. ;)

LilyPony
02-22-2010, 12:05 PM
I am in Cary, which is near Raleigh in central NC. Duke Univ Hospital isn't too far and UNC Hospitals are a drive I really loathe but would do for the right person. I think the one my ENT found to consult was at Duke and he's trying to work to get me in wit somebody quicker than they prefer to accept new patients. I'm toying with going to the emergency room and demanding a consult with the chosen person, at which point I'd be an "established patient" for a follow up. I have a $1000 ER copay so not the route I prefer!

LilyPony
02-22-2010, 12:07 PM
Thank you, if I can't get in with soembody reasonably quickly here I'll have to check her out. I've been tellign hubby I "needed" to go to Charleston anyway!

Sangye
02-22-2010, 12:10 PM
I don't know how it works in that hospital, but in JHU it wouldn't work to go through the ER. If they admitted you (assuming you were in bad enough shape) you'd just see the rheumy on call. The only exceptions are patients admitted in critical condition-- maybe kidney failure-- and who need an actual Wegs specialist asap to save their life.

I bet your ENT can get you in. When a doctor calls another doctor personally, they bend all the rules.

elephant
02-22-2010, 12:26 PM
LilyPony are you feeling bad. I have been at both ends of the hospital spectrum (a patient and taking care of patients). I would definitely get your ENT to call the Weg specialist of your choice like Sangye said. If you start to feel worse and think things are progressing yes get to ER and demand a CT of lungs ( if your having increased shortness of breath) and have them check your urine and blood work. We are here to help. If you want Carol Langford number or have any questions let me know. Let us know how you are doing. All of us here will help you the best we can. You are not alone. :)

LilyPony
02-22-2010, 12:34 PM
Mentally I feel like a basket case mostly because I'm finding so much info over the weekend. Very overwhelmed but optimistic. Physically I have been stable feeling for the last couple weeks. I got a cold from the kids which has me up all night coughing so I'm exhausted. usually it's just a few coughing episodes then back to sleep, lately I'm lucky to sleep half hour before coughing again. This afternoon I was at a friend's house and she had incense buring in the bathroom. I was "trapped" in there for about 15 minutes with my halfway potty trained 2 year old and now my lungs feel raw so am paranoid about that...

Sangye
02-22-2010, 12:39 PM
Do you have other symptoms of a cold? If you don't start feeling better in day or so, please do as Elephant suggests and get a CT at the ER.

It's easy to feel overwhelmed. Just take one step at a time. Keep asking questions and we'll do our best to answer them.

Sangye
02-22-2010, 12:42 PM
By now you've probably done a lot of research. If you have to choose between using your energy on getting to a Wegs doc or doing more research, choose the doc.

JanW
02-22-2010, 12:51 PM
LilyPony - I know how easy it is to ignore symptoms when you've got young kids and a full life to attend to. But, as Sangye says, if it seems like the cough isn't going away, or the cold isn't going away, get a CT of your lungs. And has your ENT ruled out stenosis for sure. I was never checked for it for five years (docs just thought I had asthma) but it was there all the time. If I had gotten checked out I could have had it repaired before now and would not have to work so hard for a full breath.

LilyPony
02-22-2010, 01:07 PM
I'm getting a chest xray and bloodwork on thursday. I can't remember what everything is called but the following thursday I am getting the camera to look up my nose down into my throat towards the stomach because of suspected reflux getting up into my larynx. Then I am scheduled to go to the hospital that afternoon to get the camera down to look at my windpipe and lungs. Dreading all that mess but this ENT is really on board with getting me figured out as much as possible while we wait to get in with a rheum to oversee my care.

Sangye
02-22-2010, 01:16 PM
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
02-22-2010, 11:32 PM
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
02-23-2010, 01:16 AM
Jan, does Dr Lebovics see past the larynx with a partial bronchoscope?

JanW
02-23-2010, 02:36 AM
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
03-08-2010, 07:55 AM
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
03-08-2010, 08:29 AM
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
03-08-2010, 10:33 AM
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 (http://immunedisorders.homestead.com/stress.html)

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
03-09-2010, 01:05 PM
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
03-09-2010, 02:23 PM
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
03-09-2010, 02:31 PM
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.

Sangye
03-09-2010, 09:41 PM
I'm glad it makes sense! Yes, I'm a chiropractor. No worries-- it takes awhile to get to know all of us. I think a thread about who we are is a perfect idea!

JanW
03-09-2010, 11:33 PM
Start it up, Sangye!