Re: Re: Asthma - an extraordinary disease and an extraordinary scientific fact.

June 12, 2006

Thank you, , for your response. I do appreciate the thoughts, but I just do not think that you understand the etiology of Samters. The asthma in Samters is quite different from "regular" asthma.

Besides, I just don't agree with your supposition that there is no explanation for the rise in asthma rates. There are clear environmental factors including the processed foods we eat in the industrialized world, chemicals in the products we use and pollution factors that could easily explain the rise in immune-related conditions.

I'd be glad to try the method anyway, but I don't really understand what it is exactly. I certainly have been able to improve all of my symptoms with self-help methods, however, if I went off all my medications and received no further medical treatment, I would be dead within a week or two. I guarantee you this. And it has nothing to do with willpower. It has to do with a disease. And the disease is not asthma. It is Samters, which is distinctly different with a completely different etiology than asthma.

Scores of people have died who worked at the World Trade Center during the clean-up efforts. Hundreds more have developed adult onset asthma and other immune-related conditions including mesothelioma and leukemia. Would you suggest to those with lung cancer and asthma that they should just develop better breathing methods? Or would you concede they are not responsible for their maladies at all, rather the exposure to toxins caused their illnesses?

I do feel there are positive changes that we can all make in living with Samters, but I don't feel it's because of lack of willpower that we suffer.

Thanks again for your thoughtful response.

Lori in NY

June 12, 2006

Hello Lori and ,

My beliefs are between you two. Lori, everything you say is right. , the breathing technique you refer to is similar to Buteyko practice. I have been skeptically checking it out. It has merit proven by several studies, but it is hard to do.

Here is a link http://members.westnet.com.au/pkolb/buteyko.htm

Regards,

Pam

On 6/12/06 7:52 PM, " Lori Baur " <lori@...> wrote:

Thank you, , for your response. I do appreciate the thoughts, but I just do not think that you understand the etiology of Samters. The asthma in Samters is quite different from " regular " asthma.

Besides, I just don't agree with your supposition that there is no explanation for the rise in asthma rates. There are clear environmental factors including the processed foods we eat in the industrialized world, chemicals in the products we use and pollution factors that could easily explain the rise in immune-related conditions.

I'd be glad to try the method anyway, but I don't really understand what it is exactly. I certainly have been able to improve all of my symptoms with self-help methods, however, if I went off all my medications and received no further medical treatment, I would be dead within a week or two. I guarantee you this. And it has nothing to do with willpower. It has to do with a disease. And the disease is not asthma. It is Samters, which is distinctly different with a completely different etiology than asthma.

Scores of people have died who worked at the World Trade Center during the clean-up efforts. Hundreds more have developed adult onset asthma and other immune-related conditions including mesothelioma and leukemia. Would you suggest to those with lung cancer and asthma that they should just develop better breathing methods? Or would you concede they are not responsible for their maladies at all, rather the exposure to toxins caused their illnesses?

I do feel there are positive changes that we can all make in living with Samters, but I don't feel it's because of lack of willpower that we suffer.

Thanks again for your thoughtful response.

Lori in NY

June 13, 2006

Thanks again for your comments, however, I have to say that it seems you are ignorant of Samters and its causes.

I think breathing techniques can be helpful and improve quality of life. But I'm sorry they will not prevent Samters-induced asthma for the majority of people. I think what you are saying could be dangerous to some as a matter of fact.

I did not "slip into a bad habit" by taking asthma medications and I don't think any of us did. Asthma can kill. It is a serious disease and should be taken seriously. Besides, as I have mentioned several times before to you, which you don't seem to be understanding, we do not just have "asthma." The airway difficulty is a symptom of a greater illness. None of us here have asthma by itself. We have Samters syndrome, a much more serious subset of asthma with a more difficult course. I think it is foolhardy to suggest people with Samters should not "slip into a bad habit" and take inhalers.

Lori

June 13, 2006

Lori: I agree with you > All this posting on asthma and not deep breathing is the biggest bunch of nonsense I think I have ever heard in my life. All you need to see is the pathology on an autopsy to see the problem and it 'ain't got nothing to do with deep breathing'! Stay on your meds folks. Carol

Re: Re: Asthma - an extraordinary disease and an extraordinary scientific fact.

Thanks again for your comments, however, I have to say that it seems you are ignorant of Samters and its causes.

I think breathing techniques can be helpful and improve quality of life. But I'm sorry they will not prevent Samters-induced asthma for the majority of people. I think what you are saying could be dangerous to some as a matter of fact.

I did not "slip into a bad habit" by taking asthma medications and I don't think any of us did. Asthma can kill. It is a serious disease and should be taken seriously. Besides, as I have mentioned several times before to you, which you don't seem to be understanding, we do not just have "asthma." The airway difficulty is a symptom of a greater illness. None of us here have asthma by itself. We have Samters syndrome, a much more serious subset of asthma with a more difficult course. I think it is foolhardy to suggest people with Samters should not "slip into a bad habit" and take inhalers.

Lori

June 14, 2006

I’ve tried breathing techniques

previously on many occasions but they’ve never worked for me and I even

went to the extent of going to a Physiotherapist, Naturopath and GP to learn

the correct techniques. I’ve researched various methods on the net

and tried all of them as well but without any difference at all.

Believe me I’d love for it to have

worked for me so I could perhaps cut down on my medication but alas, no luck.

Perhaps it might work for some but it didn’t

for me.

Cheers

From: samters [mailto:samters ] On Behalf Of andy_tash2

Sent: Wednesday, 14 June 2006 6:15

PM

samters

Subject: Re: Asthma - an

extraordinary disease and an extraordinary scientific fact.

hi y'all,

Asthma and Breathing Methods etc

Am I alone in being a bit surprised at the immediate rebuttal by

some of this idea?

Surely we should be encouraging everyone to check these things out

and make their own minds up? if it helps - do it!!

As we all know Asthma is a large part (1/3rd?) of Samter's Triad and

probably accounts for *more than* a 1/3rd of the debility & reduced

enjoyment of life.

Who really knows what thing(s) cause(s) it?

No-one has found *the* solution assuming there's only one....

As always it seems in Western medicine - all the meds do is treat

the symptoms not the underlying cause(s) - if this idea on asthma

and breathing can work for asthmatics who knows if this can or can't

help us with at least that part of Samter's?

From my initial mere 5 minutes of investigation I found this

interesting:-

http://members.westnet.com.au/pkolb/br_par~1.htm

sufficiently so to write this to the group.....

peace and easier breathing!

Andy (UK)

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June 14, 2006

I have had Samters for 17 years. I have tried breathing methods. I have tried pretty much every alternative method there is. None of them did very much for me at all. I never said that this method shouldn't be tried. I only said I think it is foolhardy to suggest that willpower alone will cure a serious illness or that we should give up our medications. is suggesting that inhalers are a bad habit. I do not agree with that. I resisted inhalers for a long time and almost died because of it.

I was seeing natural practitioners at the time and dealing with a specialist in proper breathing and technique and thought I could do it without medications. The other things such as this breathing technique (which by the way I thought was very confusing and hard to understand) can certainly enhance one's life. But cure Samters and the asthma that goes along with it? I doubt it. But if you want, go ahead and try and see what happens. By the way, some of the etiology of Samters is known, and one of the things known about it is that there are too many leukotrienes circulating throughout the respiratory tract, both upper and lower, and that this contributes to the asthma and polyps. I don't know the cause of Samters, but I would be extremely surprised if breathing improperly was the cause of it.

Just my thoughts and opinions, and I do welcome your contrasting opinions, always.

Lori

June 14, 2006

Yes, I know I did "shoot" down the correct breathing alternative fairly quickly. I think only because I've had friends who have also told me that I don't need doctors and that I can basically 'fix' this on my own. I think they feel that because this came on when I was 37 years old. And they think it's stress related and that my system is toxic and needs to be cleansed. But the reality is....I was healthy. I am slender and before I got this... I exercised an hour a day (5 days a week), ate good foods, didn't take any medications, and drank green tea every day. Now, in little over a year, I can't exercise, I'm allergic to green tea and allergic to a lot of fruits and vegetables. And when I went to the ENT, he said it's something my body produces too much of.... and the cause is not yet known. But if there is something I've

learned.... which goes back to the eastern philosophy.. is that no one knows all. And what works for one person may not work for another. If one can use breathing techniques to overcome asthma... and stay off medicine... then go for it. I just know, my asthma has been severe, painful, life threatening and in need of medication to subdue the reactions. Peace! Michele kateatcu <katea98@...> wrote: I agree that it was somewhat sad to see

something being shot down so quickly and with (what I felt) was a bit of harshness. However, I think some of us fear (as I've mentioned before) that there are people out there "watching" our board for ideas and may see this posting about how breathing techniques could be a potential solution, and having seen that, could have a potentially disasterous result. Its scary really if you think about it. And with all the collective suffering that everyone with Samters has experienced, none of us want to see anyone suffer more than necessary (or, worst case scenario, die from an untreated asthma attack).Case in point. I have a friend that is a self-proclaimed "hippie" because he doesn't like to use medicine for any of his problems. Oddly enough he has asthma and depends on his Albuterol inhaler more than anyone I've ever seen (yes, this is a contradiction to his "hippie-ness"). He won't consider using a med like

Advair or anything to PREVENT his problem. Anyway, a while back he and I went to a concert together and I had an asthma attack and was on the verge of being totally incapacitated. I begged him to take me to the emergency room, but he refused because he was convinced I was just having anxiety. Luckily I had some Prednisone in my purse and took it, however I still ended up PASSING OUT in his car because I wasn't getting enough oxygen. He simply left me there!!! I woke up hours later and was luckily alive.BE CAUTIOUS with "breathing techniques" or "natural medicine". Sure, it MAY work, but it MAY NOT and the potential consequences can be FATAL. I really encourage people to new try things to control this disease, but be smart about it, and BE SURE to surround yourself with poeople that are AWARE of your condition and will help you if you get into trouble.Alas, those are my

thoughts. __________________________________________________

June 14, 2006

I am not sure where you got the idea that, A, I or others were not keeping an open mind or, B, that we were looking/waiting/hoping/praying for one solution.

I have tried many, many, many things, including many so-called alternative techniques (which I do not believe are alternative at all) and lots of different breathing techniques and experiences with natural healers and therapists and you name it, I've tried it. I don't really think this is anything new that is being talked about.

I don't know who is looking for one solution to one problem, but I do think there is a common etiology for almost all of us that differentiates us from the common asthma sufferer. And quite honestly I think I asked a lot of questions of before I "shot down" his comments, and I thought I actually was diplomatic. I did not feel the questions were answered satisfactorily. I thought it was a lot of conjecturing from someone with absolutely no understanding of Samters. Should I have waited until everyone got a chance to read and try to decipher his cryptic comments before I started a dialogue? I thought the whole point was to have a dialogue, and I thought I was entering into one.

But most of all I thought it was irresponsible and dangerous to suggest that people are weak and have no willpower and are simply falling into a habit of using an inhaler. But hey is welcome to express his opinion here, as are you and everyone else. And I think the group is richer for the differing point of views, so I am glad for it, and I am glad you are expressing them now. I do mean that sincerely.

If anyone finds success with this breathing method, I would be very happy to hear about it. Especially if anyone finds it so effective that they can go off their inhalers, I will be the first one to want to know about it, believe me. I hate taking Advair every day. But if I didn't, I know I would be six feet under. I've been too close to death too many times to mess around. That is my experience, and I recognize others may have less severe asthma symptoms with their Samters.

I don't necessarily think drug companies will not fund money into researching this, we just have to band together and get our voices heard. I have had trouble in my efforts to help do this, and part of it was the fact that the doctors who want funding seem to be grossly overestimating the number of people with Samters, whereas if we could get it classified as a rare disease we could get funding through different channels. By the estimates of prevalence that we were given by a prominent researcher in the field, one in every 150 people in the United States has Samters. That to me cannot possibly be true. How many people here ever even met another person with this illness not through this group or through a medical situation, just in their everyday lives? I never, ever have.

But I don't know the real numbers, I just think it can't be THAT many or this group would be much, much bigger since it is the only group I know of of its kind. And thank goodness for this group. (Thanks, , for founding it!)

Lori

June 14, 2006

Thank you, Michele for these comments. I guess sometimes I find it upsetting when people who do not have this illness purport to have not only the answer to our problems but the reason for it (such as falling victim to the addiction of inhalers). I was completely healthy before Samters. The stress OF Samters was the only stress in my life at the time and often is the main stress now and has been throughout my life.

But you can be healthy again, at least healthier than you are now. You will find some answers. It is a long road but you can do it with the right support!

Lori

June 14, 2006

Lori: Just a comment on incidence: I don't think Samter's is actually all that rare. I have four of them in my practice and I have just a general internal medicine practice. Two of them I diagnosed myself. Counting me that makes five. I think that is a lot in a small rural practice! Carol