Thanks and questions

[Guest guest]

Hi and thanks for the fast responses. I found the library and that

is helping immensely. I would like to try everything I can to see if

I can get relief. Any tips regarding the diet changes? I am willing

to live on bananas if I can breathe. I realize now that I eat a lot

of salicylate-containing foods daily. I love Altoids wintergreen

candies... Is this typical that MD's don't immediately figure this

out? I have lived with this for 17 years and was only told to not

take aspirin. Has anyone on here been successful at decreasing

symptoms by trying the diet changes or ASA desensitisation? Thanks -

Dawn

[Guest guest]

> From: " eberhardt1967 " <eberhardt@...>

>

.. . . .

> candies... Is this typical that MD's don't immediately figure this

> out? I have lived with this for 17 years and was only told to not

> take aspirin.

Most people here have learned more from the group than from all the doctors

they have seen about their Samters symptoms.

--

Ken West

Check the library . . .

samters/links

[Guest guest]

My husband, Mike, seems to have a similar story.. His symptoms started in his early 20's. And asthma symptoms came in his late 20's (he is now 33). When we first started dating, I told him he "gurgled" in his sleep. I have been wearing ear plugs for the past four years, and feel guilty when the gurgling is so loud I have to wake him up in the middle of the night to blow his nose. This has been the case until very recently.He was desensitized over a year ago. Since then, like clockwork, he has taken a tapering amount of prednisone once a month, out of necessity to breath. Because of what we understand about prednisone (although to our surprise some folks in this group have done okay on it longer term), it became a deal breaker in regards to his treatment. My husband and I agreed that if one more month passed that he had to take prednisone, he would see an integrative medicine doctor who came highly recommended. He is in the medical field and highly skeptical about anything other than western meds and approach to disease.Two months have passed since seeing this new dr, and he cannot remember the last time he could breath for two consecutive months (without prednisone, polypectomy, surgery). It was through a diet cleanse, along with supplements (I.e. Aller-c; olive leaf extract..) that he can now breath like he has not since the onset! And I haven't had to wear my ear plugs! There is still some trial and error, but at least now through eating ultra healthy and doing a diet detox, he can identify (and accept that he cannot have) the triggers: wine, beer, wheat, dairy, to name a few. Mike is still on the road to recovery, but he has been able to lower his aspirin dose and eliminate a couple of prescriptions from the long list. I just strongly recommend to anyone facing this..or at least those who haven't found something that works for them.. to be open to trying to find an integrative doc..someone who knows both western and eastern / holistic practices. It does seem to be a challenge to these alt med doctors, like western dr's, but they seem more likely to look at the whole lifestyle of a person..and his dr said that polyps are actually a sign of a healthy individual because the body is trying to get rid of toxins. Anyway, hope this story helps.Sabina P.s. He wasn't inhaling pulmacort directly, but he was inhaling a vile of budesonide nightly while laying down. Sent from my Verizon Wireless BlackBerryFrom: "teacher01" <susandebisschop@...>Sender: samters Date: Mon, 01 Aug 2011 05:10:11 -0000<samters >Reply samters Subject: Thanks and questions Thanks for all the great information that you all share. I have found it very useful and interesting. It's nice to know that others out there share some of the same difficulties.My story:- Developed Samter's in my early 20s (never had allergies, etc... before)- Started having wheezing symptoms after taking major doses of aspirin, etc.. for sinus headaches- I've had 4 sinus surgeres (including a frontal obliteration which has been wonderful at reducing my headaches)- I was in denial about having asthma (never symptoms unless I took aspirin/nsaids; before pregnancy had horrible asthma and afterwards too - now on Zyflo successful in treating the asthma - doesn't seem to be helping the polyps (and Singulair didn't either)- Also on Advair- Was desensitized, until pregnancy... haven't been again as it didn't seem to help me- Was on low dose of prednisone for many years and developed Adrenal insufficiency (the miracle and devil drug...) Better now but weary about it - but it's the only thing that helps with the inflammation.Questions:Anyone doing pulmicort respules directly into nose. How can I do it more effectively (laying on bed upside down...) I just have a hard time keeping up with it as during the year I am a school teacher and these sinus infections just take the life out of me. I feel like I am always stressed at work and I am sure this exacerbates my condition... I always want to nap; never feel refreshed. I was using it in my neilmed rinse but it wasn't working well enough. I am now on a pred. taper (60 - 10 in 6 days) and hoping I can open my frontals again as they were closed. I know it is important to keep this up, but any ideas to help? I seem to get so little sleep with my sinuses (I feel like water is gurgling all the time in my nose - very loud - even ear plugs don't help hubby).- How do you cope better with loss of SOS? I hate it to death. I find myself eating more. I love things with texture now.... From your experience (other than being on pred.) is there anything else that may help? - Anyone else look into eosinophils being high? Churg Strauss or eosinophilia? Mine are okay right now. - I just had a recent skin test done again and came back with no positives for environmental allergies. This is really perplexing considering how I feel, but maybe not as it is all year round. I even keep the cat out of my bed now but still feel horrible(supposedly have a allergy to him..., maybe it's the dander holding on for a while...) How does one understand all this " inflammation " but nothing really to pin it on?- Finally, they have cultured pseucdomonas and staph. Pseudomonas really scare me - I feel like I have a chronic infection... Thanks for all the advice on this and I'll be glad to hear more. - Anyone's doctor suspect fungal infection as well. We went that route for a while no real change.Thanks for indulging me in this long email. I feel that I am always " sick " and try to do my best. But it is discouraging and frustrating... and as many say many do not understand - although they try very hard. I feel like they must think I'm crazy at times and I should just try a decongestant (been there done that...). Just a lonely disease if that is what you can call it. Sue

[Guest guest]

Good luck to your husband! He does sound similar! I'll have to look into other

eastern methods of treatment... I have seen a naturopath in the past and she was

wonderful but I never saw any real improvement. I've tried the elimination diet

twice (no sugar, milk, wheat, etc...) and no real improvement either. Maybe

I'll try that again. I do have a few weeks before school begins again. It's

just so tough with diet changes. But as someone else said on here, it may be

worth it. Not sure about losing the chocolate though What stops me

sometimes is that I did have the blood test for food allergies (a couple years

ago it was new) and didn't show any big reactions to anything. But I am

convinced it must be something.

I heard something once and I agree with it; if you have minor allergies and then

you put them all on top of eachother then it becomes culumative and effects you

more. So if you have a minor dust allergy, and maybe cat, etc... then maybe one

minor food - that can all accumulate I would guess!

Oh and Pulmicort is the same as budesonide.

Thanks for your story!

Sue

>

> My husband, Mike, seems to have a similar story.. His symptoms started in his

early 20's. And asthma symptoms came in his late 20's (he is now 33). When we

first started dating, I told him he " gurgled " in his sleep. I have been wearing

ear plugs for the past four years, and feel guilty when the gurgling is so loud

I have to wake him up in the middle of the night to blow his nose. This has been

the case until very recently.

>

> He was desensitized over a year ago. Since then, like clockwork, he has taken

a tapering amount of prednisone once a month, out of necessity to breath.

Because of what we understand about prednisone (although to our surprise some

folks in this group have done okay on it longer term), it became a deal breaker

in regards to his treatment. My husband and I agreed that if one more month

passed that he had to take prednisone, he would see an integrative medicine

doctor who came highly recommended. He is in the medical field and highly

skeptical about anything other than western meds and approach to disease.

>

> Two months have passed since seeing this new dr, and he cannot remember the

last time he could breath for two consecutive months (without prednisone,

polypectomy, surgery). It was through a diet cleanse, along with supplements

(I.e. Aller-c; olive leaf extract..) that he can now breath like he has not

since the onset! And I haven't had to wear my ear plugs! There is still some

trial and error, but at least now through eating ultra healthy and doing a diet

detox, he can identify (and accept that he cannot have) the triggers: wine,

beer, wheat, dairy, to name a few. Mike is still on the road to recovery, but he

has been able to lower his aspirin dose and eliminate a couple of prescriptions

from the long list.

>

> I just strongly recommend to anyone facing this..or at least those who haven't

found something that works for them.. to be open to trying to find an

integrative doc..someone who knows both western and eastern / holistic

practices. It does seem to be a challenge to these alt med doctors, like western

dr's, but they seem more likely to look at the whole lifestyle of a person..and

his dr said that polyps are actually a sign of a healthy individual because the

body is trying to get rid of toxins.

>

> Anyway, hope this story helps.

>

> Sabina

>

> P.s. He wasn't inhaling pulmacort directly, but he was inhaling a vile of

budesonide nightly while laying down.

>

> Sent from my Verizon Wireless BlackBerry

>

> Thanks and questions

>

> Thanks for all the great information that you all share. I have found it very

useful and interesting. It's nice to know that others out there share some of

the same difficulties.

>

> My story:

>

> - Developed Samter's in my early 20s (never had allergies, etc... before)

> - Started having wheezing symptoms after taking major doses of aspirin, etc..

for sinus headaches

> - I've had 4 sinus surgeres (including a frontal obliteration which has been

wonderful at reducing my headaches)

> - I was in denial about having asthma (never symptoms unless I took

aspirin/nsaids; before pregnancy had horrible asthma and afterwards too - now on

Zyflo successful in treating the asthma - doesn't seem to be helping the polyps

(and Singulair didn't either)

> - Also on Advair

> - Was desensitized, until pregnancy... haven't been again as it didn't seem

to help me

> - Was on low dose of prednisone for many years and developed Adrenal

insufficiency (the miracle and devil drug...) Better now but weary about it -

but it's the only thing that helps with the inflammation.

>

> Questions:

>

> Anyone doing pulmicort respules directly into nose. How can I do it more

effectively (laying on bed upside down...) I just have a hard time keeping up

with it as during the year I am a school teacher and these sinus infections just

take the life out of me. I feel like I am always stressed at work and I am sure

this exacerbates my condition... I always want to nap; never feel refreshed. I

was using it in my neilmed rinse but it wasn't working well enough. I am now on

a pred. taper (60 - 10 in 6 days) and hoping I can open my frontals again as

they were closed.

>

> I know it is important to keep this up, but any ideas to help? I seem to get

so little sleep with my sinuses (I feel like water is gurgling all the time in

my nose - very loud - even ear plugs don't help hubby).

>

> - How do you cope better with loss of SOS? I hate it to death. I find myself

eating more. I love things with texture now.... From your experience (other

than being on pred.) is there anything else that may help?

>

> - Anyone else look into eosinophils being high? Churg Strauss or

eosinophilia? Mine are okay right now.

>

> - I just had a recent skin test done again and came back with no positives for

environmental allergies. This is really perplexing considering how I feel, but

maybe not as it is all year round. I even keep the cat out of my bed now but

still feel horrible(supposedly have a allergy to him..., maybe it's the dander

holding on for a while...) How does one understand all this " inflammation " but

nothing really to pin it on?

>

> - Finally, they have cultured pseucdomonas and staph. Pseudomonas really

scare me - I feel like I have a chronic infection... Thanks for all the advice

on this and I'll be glad to hear more.

>

> - Anyone's doctor suspect fungal infection as well. We went that route for a

while no real change.

>

> Thanks for indulging me in this long email. I feel that I am always " sick "

and try to do my best. But it is discouraging and frustrating... and as many

say many do not understand - although they try very hard. I feel like they must

think I'm crazy at times and I should just try a decongestant (been there done

that...). Just a lonely disease if that is what you can call it.

>

> Sue

>

[Guest guest]

I'd actually be interested in the toxic cleans diet- could you send it to me?

Thanks,

samters From: sabina1003@...Date: Mon, 1 Aug 2011 19:52:00 +0000Subject: Re: Re: Thanks and questions

Seeing my husband's results so far (knock on wood), it definitely seems worth it. I don't know think he knew if it was worth it either, until he did it. Its hard to know if diet alone is enough, although we're positive it helped immensely, because like I mentioned, he has been taking supplements too. And now he's to the point of tapering off some of those too. The cleanse is "only" six weeks actually n then you can add things back in. I've witnessed Mike give up all the things he loves: alcohol, cheese, bread, coffee, sweets.... I actually sent the toxic cleanse diet he has been on to another member here. If you're interested I can forward it to you too. His new Dr actually doesn't believe in allergies. He says that its a matter of intolerances and that Mike obviously has a lower tolerance for certain things. So maybe it makes sense you tested neg for food allergies..I think if you can find an integrative medicine doctor, it might be a lot more helpful than a naturopath in this case (no offense to them). Its just such a challenging issue. So I guess he was taking pulmicort then Now he takes Argentyn 23 instead. Best,Sabina

Sent from my Verizon Wireless BlackBerry

From: "teacher01" <susandebisschop@...>

Sender: samters

Date: Mon, 01 Aug 2011 14:35:35 -0000

<samters >

Replysamters

Subject: Re: Thanks and questions

Good luck to your husband! He does sound similar! I'll have to look into other eastern methods of treatment... I have seen a naturopath in the past and she was wonderful but I never saw any real improvement. I've tried the elimination diet twice (no sugar, milk, wheat, etc...) and no real improvement either. Maybe I'll try that again. I do have a few weeks before school begins again. It's just so tough with diet changes. But as someone else said on here, it may be worth it. Not sure about losing the chocolate though What stops me sometimes is that I did have the blood test for food allergies (a couple years ago it was new) and didn't show any big reactions to anything. But I am convinced it must be something.I heard something once and I agree with it; if you have minor allergies and then you put them all on top of eachother then it becomes culumative and effects you more. So if you have a minor dust allergy, and maybe cat, etc... then maybe one minor food - that can all accumulate I would guess!Oh and Pulmicort is the same as budesonide. Thanks for your story!Sue>> My husband, Mike, seems to have a similar story.. His symptoms started in his early 20's. And asthma symptoms came in his late 20's (he is now 33). When we first started dating, I told him he "gurgled" in his sleep. I have been wearing ear plugs for the past four years, and feel guilty when the gurgling is so loud I have to wake him up in the middle of the night to blow his nose. This has been the case until very recently.> > He was desensitized over a year ago. Since then, like clockwork, he has taken a tapering amount of prednisone once a month, out of necessity to breath. Because of what we understand about prednisone (although to our surprise some folks in this group have done okay on it longer term), it became a deal breaker in regards to his treatment. My husband and I agreed that if one more month passed that he had to take prednisone, he would see an integrative medicine doctor who came highly recommended. He is in the medical field and highly skeptical about anything other than western meds and approach to disease.> > Two months have passed since seeing this new dr, and he cannot remember the last time he could breath for two consecutive months (without prednisone, polypectomy, surgery). It was through a diet cleanse, along with supplements (I.e. Aller-c; olive leaf extract..) that he can now breath like he has not since the onset! And I haven't had to wear my ear plugs! There is still some trial and error, but at least now through eating ultra healthy and doing a diet detox, he can identify (and accept that he cannot have) the triggers: wine, beer, wheat, dairy, to name a few. Mike is still on the road to recovery, but he has been able to lower his aspirin dose and eliminate a couple of prescriptions from the long list.> > I just strongly recommend to anyone facing this..or at least those who haven't found something that works for them.. to be open to trying to find an integrative doc..someone who knows both western and eastern / holistic practices. It does seem to be a challenge to these alt med doctors, like western dr's, but they seem more likely to look at the whole lifestyle of a person..and his dr said that polyps are actually a sign of a healthy individual because the body is trying to get rid of toxins. > > Anyway, hope this story helps.> > Sabina> > P.s. He wasn't inhaling pulmacort directly, but he was inhaling a vile of budesonide nightly while laying down. > > Sent from my Verizon Wireless BlackBerry> > Thanks and questions> > Thanks for all the great information that you all share. I have found it very useful and interesting. It's nice to know that others out there share some of the same difficulties.> > My story:> > - Developed Samter's in my early 20s (never had allergies, etc... before)> - Started having wheezing symptoms after taking major doses of aspirin, etc.. for sinus headaches> - I've had 4 sinus surgeres (including a frontal obliteration which has been wonderful at reducing my headaches)> - I was in denial about having asthma (never symptoms unless I took aspirin/nsaids; before pregnancy had horrible asthma and afterwards too - now on Zyflo successful in treating the asthma - doesn't seem to be helping the polyps (and Singulair didn't either)> - Also on Advair> - Was desensitized, until pregnancy... haven't been again as it didn't seem to help me> - Was on low dose of prednisone for many years and developed Adrenal insufficiency (the miracle and devil drug...) Better now but weary about it - but it's the only thing that helps with the inflammation.> > Questions:> > Anyone doing pulmicort respules directly into nose. How can I do it more effectively (laying on bed upside down...) I just have a hard time keeping up with it as during the year I am a school teacher and these sinus infections just take the life out of me. I feel like I am always stressed at work and I am sure this exacerbates my condition... I always want to nap; never feel refreshed. I was using it in my neilmed rinse but it wasn't working well enough. I am now on a pred. taper (60 - 10 in 6 days) and hoping I can open my frontals again as they were closed. > > I know it is important to keep this up, but any ideas to help? I seem to get so little sleep with my sinuses (I feel like water is gurgling all the time in my nose - very loud - even ear plugs don't help hubby).> > - How do you cope better with loss of SOS? I hate it to death. I find myself eating more. I love things with texture now.... From your experience (other than being on pred.) is there anything else that may help? > > - Anyone else look into eosinophils being high? Churg Strauss or eosinophilia? Mine are okay right now. > > - I just had a recent skin test done again and came back with no positives for environmental allergies. This is really perplexing considering how I feel, but maybe not as it is all year round. I even keep the cat out of my bed now but still feel horrible(supposedly have a allergy to him..., maybe it's the dander holding on for a while...) How does one understand all this "inflammation" but nothing really to pin it on?> > - Finally, they have cultured pseucdomonas and staph. Pseudomonas really scare me - I feel like I have a chronic infection... Thanks for all the advice on this and I'll be glad to hear more. > > - Anyone's doctor suspect fungal infection as well. We went that route for a while no real change.> > Thanks for indulging me in this long email. I feel that I am always "sick" and try to do my best. But it is discouraging and frustrating... and as many say many do not understand - although they try very hard. I feel like they must think I'm crazy at times and I should just try a decongestant (been there done that...). Just a lonely disease if that is what you can call it. > > Sue >

[Guest guest]

Sabina,

I, too, would love to know what the cleanse diet consists of. Would you send me it to me also.

Thanks,

Russ

P.S. ...I just eliminated chocolate after years of refusal, and it has, without question, made a difference in lightening my symptoms.

From: samters [mailto:samters ] On Behalf Of alexandra rubinSent: Monday, August 01, 2011 4:33 PMsamters Subject: RE: Re: Thanks and questions

I'd actually be interested in the toxic cleans diet- could you send it to me? Thanks,

samters From: sabina1003@...Date: Mon, 1 Aug 2011 19:52:00 +0000Subject: Re: Re: Thanks and questions

Seeing my husband's results so far (knock on wood), it definitely seems worth it. I don't know think he knew if it was worth it either, until he did it. Its hard to know if diet alone is enough, although we're positive it helped immensely, because like I mentioned, he has been taking supplements too. And now he's to the point of tapering off some of those too. The cleanse is "only" six weeks actually n then you can add things back in. I've witnessed Mike give up all the things he loves: alcohol, cheese, bread, coffee, sweets.... I actually sent the toxic cleanse diet he has been on to another member here. If you're interested I can forward it to you too. His new Dr actually doesn't believe in allergies. He says that its a matter of intolerances and that Mike obviously has a lower tolerance for certain things. So maybe it makes sense you tested neg for food allergies..I think if you can find an integrative medicine doctor, it might be a lot more helpful than a naturopath in this case (no offense to them). Its just such a challenging issue. So I guess he was taking pulmicort then Now he takes Argentyn 23 instead. Best,Sabina

Sent from my Verizon Wireless BlackBerry

From: "teacher01" <susandebisschop@...>

Sender: samters

Date: Mon, 01 Aug 2011 14:35:35 -0000

<samters >

Replysamters

Subject: Re: Thanks and questions

Good luck to your husband! He does sound similar! I'll have to look into other eastern methods of treatment... I have seen a naturopath in the past and she was wonderful but I never saw any real improvement. I've tried the elimination diet twice (no sugar, milk, wheat, etc...) and no real improvement either. Maybe I'll try that again. I do have a few weeks before school begins again. It's just so tough with diet changes. But as someone else said on here, it may be worth it. Not sure about losing the chocolate though What stops me sometimes is that I did have the blood test for food allergies (a couple years ago it was new) and didn't show any big reactions to anything. But I am convinced it must be something.I heard something once and I agree with it; if you have minor allergies and then you put them all on top of eachother then it becomes culumative and effects you more. So if you have a minor dust allergy, and maybe cat, etc... then maybe one minor food - that can all accumulate I would guess!Oh and Pulmicort is the same as budesonide. Thanks for your story!Sue>> My husband, Mike, seems to have a similar story.. His symptoms started in his early 20's. And asthma symptoms came in his late 20's (he is now 33). When we first started dating, I told him he "gurgled" in his sleep. I have been wearing ear plugs for the past four years, and feel guilty when the gurgling is so loud I have to wake him up in the middle of the night to blow his nose. This has been the case until very recently.> > He was desensitized over a year ago. Since then, like clockwork, he has taken a tapering amount of prednisone once a month, out of necessity to breath. Because of what we understand about prednisone (although to our surprise some folks in this group have done okay on it longer term), it became a deal breaker in regards to his treatment. My husband and I agreed that if one more month passed that he had to take prednisone, he would see an integrative medicine doctor who came highly recommended. He is in the medical field and highly skeptical about anything other than western meds and approach to disease.> > Two months have passed since seeing this new dr, and he cannot remember the last time he could breath for two consecutive months (without prednisone, polypectomy, surgery). It was through a diet cleanse, along with supplements (I.e. Aller-c; olive leaf extract..) that he can now breath like he has not since the onset! And I haven't had to wear my ear plugs! There is still some trial and error, but at least now through eating ultra healthy and doing a diet detox, he can identify (and accept that he cannot have) the triggers: wine, beer, wheat, dairy, to name a few. Mike is still on the road to recovery, but he has been able to lower his aspirin dose and eliminate a couple of prescriptions from the long list.> > I just strongly recommend to anyone facing this..or at least those who haven't found something that works for them.. to be open to trying to find an integrative doc..someone who knows both western and eastern / holistic practices. It does seem to be a challenge to these alt med doctors, like western dr's, but they seem more likely to look at the whole lifestyle of a person..and his dr said that polyps are actually a sign of a healthy individual because the body is trying to get rid of toxins. > > Anyway, hope this story helps.> > Sabina> > P.s. He wasn't inhaling pulmacort directly, but he was inhaling a vile of budesonide nightly while laying down. > > Sent from my Verizon Wireless BlackBerry> > Thanks and questions> > Thanks for all the great information that you all share. I have found it very useful and interesting. It's nice to know that others out there share some of the same difficulties.> > My story:> > - Developed Samter's in my early 20s (never had allergies, etc... before)> - Started having wheezing symptoms after taking major doses of aspirin, etc.. for sinus headaches> - I've had 4 sinus surgeres (including a frontal obliteration which has been wonderful at reducing my headaches)> - I was in denial about having asthma (never symptoms unless I took aspirin/nsaids; before pregnancy had horrible asthma and afterwards too - now on Zyflo successful in treating the asthma - doesn't seem to be helping the polyps (and Singulair didn't either)> - Also on Advair> - Was desensitized, until pregnancy... haven't been again as it didn't seem to help me> - Was on low dose of prednisone for many years and developed Adrenal insufficiency (the miracle and devil drug...) Better now but weary about it - but it's the only thing that helps with the inflammation.> > Questions:> > Anyone doing pulmicort respules directly into nose. How can I do it more effectively (laying on bed upside down...) I just have a hard time keeping up with it as during the year I am a school teacher and these sinus infections just take the life out of me. I feel like I am always stressed at work and I am sure this exacerbates my condition... I always want to nap; never feel refreshed. I was using it in my neilmed rinse but it wasn't working well enough. I am now on a pred. taper (60 - 10 in 6 days) and hoping I can open my frontals again as they were closed. > > I know it is important to keep this up, but any ideas to help? I seem to get so little sleep with my sinuses (I feel like water is gurgling all the time in my nose - very loud - even ear plugs don't help hubby).> > - How do you cope better with loss of SOS? I hate it to death. I find myself eating more. I love things with texture now.... From your experience (other than being on pred.) is there anything else that may help? > > - Anyone else look into eosinophils being high? Churg Strauss or eosinophilia? Mine are okay right now. > > - I just had a recent skin test done again and came back with no positives for environmental allergies. This is really perplexing considering how I feel, but maybe not as it is all year round. I even keep the cat out of my bed now but still feel horrible(supposedly have a allergy to him..., maybe it's the dander holding on for a while...) How does one understand all this "inflammation" but nothing really to pin it on?> > - Finally, they have cultured pseucdomonas and staph. Pseudomonas really scare me - I feel like I have a chronic infection... Thanks for all the advice on this and I'll be glad to hear more. > > - Anyone's doctor suspect fungal infection as well. We went that route for a while no real change.> > Thanks for indulging me in this long email. I feel that I am always "sick" and try to do my best. But it is discouraging and frustrating... and as many say many do not understand - although they try very hard. I feel like they must think I'm crazy at times and I should just try a decongestant (been there done that...). Just a lonely disease if that is what you can call it. > > Sue >

[Guest guest]

Sabina,

I would very much like to see the cleanse diet.  It would be helpful

to lot of us if you could post it.

Thanks,

Carl

On 8/1/2011 12:52 PM, sabina1003@... wrote:

 

Seeing my husband's results so far (knock on wood), it

definitely seems worth it. I don't know think he knew if

it was worth it either, until he did it. Its hard to know

if diet alone is enough, although we're positive it helped

immensely, because like I mentioned, he has been taking

supplements too. And now he's to the point of tapering off

some of those too. The cleanse is "only" six weeks

actually n then you can add things back in. I've witnessed

Mike give up all the things he loves: alcohol, cheese,

bread, coffee, sweets.... I actually sent the toxic

cleanse diet he has been on to another member here. If

you're interested I can forward it to you too.

His new Dr actually doesn't believe in allergies. He says

that its a matter of intolerances and that Mike obviously

has a lower tolerance for certain things. So maybe it

makes sense you tested neg for food allergies..

I think if you can find an integrative medicine doctor, it

might be a lot more helpful than a naturopath in this case

(no offense to them). Its just such a challenging issue.

So I guess he was taking pulmicort then Now he takes

Argentyn 23 instead.

Best,

Sabina

Sent from my Verizon Wireless BlackBerry

From: "teacher01"

<susandebisschop@...>

Sender: samters

Date: Mon, 01 Aug 2011 14:35:35 -0000

<samters >

Reply samters

Subject: Re: Thanks and questions

 

Good luck to your husband! He does sound similar! I'll

have to look into other eastern methods of treatment...

I have seen a naturopath in the past and she was

wonderful but I never saw any real improvement. I've

tried the elimination diet twice (no sugar, milk, wheat,

etc...) and no real improvement either. Maybe I'll try

that again. I do have a few weeks before school begins

again. It's just so tough with diet changes. But as

someone else said on here, it may be worth it. Not sure

about losing the chocolate though What stops me

sometimes is that I did have the blood test for food

allergies (a couple years ago it was new) and didn't

show any big reactions to anything. But I am convinced

it must be something.

I heard something once and I agree with it; if you have

minor allergies and then you put them all on top of

eachother then it becomes culumative and effects you

more. So if you have a minor dust allergy, and maybe

cat, etc... then maybe one minor food - that can all

accumulate I would guess!

Oh and Pulmicort is the same as budesonide.

Thanks for your story!

Sue

>

> My husband, Mike, seems to have a similar story..

His symptoms started in his early 20's. And asthma

symptoms came in his late 20's (he is now 33). When we

first started dating, I told him he "gurgled" in his

sleep. I have been wearing ear plugs for the past four

years, and feel guilty when the gurgling is so loud I

have to wake him up in the middle of the night to blow

his nose. This has been the case until very recently.

>

> He was desensitized over a year ago. Since then,

like clockwork, he has taken a tapering amount of

prednisone once a month, out of necessity to breath.

Because of what we understand about prednisone (although

to our surprise some folks in this group have done okay

on it longer term), it became a deal breaker in regards

to his treatment. My husband and I agreed that if one

more month passed that he had to take prednisone, he

would see an integrative medicine doctor who came highly

recommended. He is in the medical field and highly

skeptical about anything other than western meds and

approach to disease.

>

> Two months have passed since seeing this new dr,

and he cannot remember the last time he could breath for

two consecutive months (without prednisone, polypectomy,

surgery). It was through a diet cleanse, along with

supplements (I.e. Aller-c; olive leaf extract..) that he

can now breath like he has not since the onset! And I

haven't had to wear my ear plugs! There is still some

trial and error, but at least now through eating ultra

healthy and doing a diet detox, he can identify (and

accept that he cannot have) the triggers: wine, beer,

wheat, dairy, to name a few. Mike is still on the road

to recovery, but he has been able to lower his aspirin

dose and eliminate a couple of prescriptions from the

long list.

>

> I just strongly recommend to anyone facing this..or

at least those who haven't found something that works

for them.. to be open to trying to find an integrative

doc..someone who knows both western and eastern /

holistic practices. It does seem to be a challenge to

these alt med doctors, like western dr's, but they seem

more likely to look at the whole lifestyle of a

person..and his dr said that polyps are actually a sign

of a healthy individual because the body is trying to

get rid of toxins.

>

> Anyway, hope this story helps.

>

> Sabina

>

> P.s. He wasn't inhaling pulmacort directly, but he

was inhaling a vile of budesonide nightly while laying

down.

>

> Sent from my Verizon Wireless BlackBerry

>

> Thanks and questions

>

> Thanks for all the great information that you all

share. I have found it very useful and interesting. It's

nice to know that others out there share some of the

same difficulties.

>

> My story:

>

> - Developed Samter's in my early 20s (never had

allergies, etc... before)

> - Started having wheezing symptoms after taking

major doses of aspirin, etc.. for sinus headaches

> - I've had 4 sinus surgeres (including a frontal

obliteration which has been wonderful at reducing my

headaches)

> - I was in denial about having asthma (never

symptoms unless I took aspirin/nsaids; before pregnancy

had horrible asthma and afterwards too - now on Zyflo

successful in treating the asthma - doesn't seem to be

helping the polyps (and Singulair didn't either)

> - Also on Advair

> - Was desensitized, until pregnancy... haven't been

again as it didn't seem to help me

> - Was on low dose of prednisone for many years and

developed Adrenal insufficiency (the miracle and devil

drug...) Better now but weary about it - but it's the

only thing that helps with the inflammation.

>

> Questions:

>

> Anyone doing pulmicort respules directly into nose.

How can I do it more effectively (laying on bed upside

down...) I just have a hard time keeping up with it as

during the year I am a school teacher and these sinus

infections just take the life out of me. I feel like I

am always stressed at work and I am sure this

exacerbates my condition... I always want to nap; never

feel refreshed. I was using it in my neilmed rinse but

it wasn't working well enough. I am now on a pred. taper

(60 - 10 in 6 days) and hoping I can open my frontals

again as they were closed.

>

> I know it is important to keep this up, but any

ideas to help? I seem to get so little sleep with my

sinuses (I feel like water is gurgling all the time in

my nose - very loud - even ear plugs don't help hubby).

>

> - How do you cope better with loss of SOS? I hate

it to death. I find myself eating more. I love things

with texture now.... From your experience (other than

being on pred.) is there anything else that may help?

>

> - Anyone else look into eosinophils being high?

Churg Strauss or eosinophilia? Mine are okay right now.

>

> - I just had a recent skin test done again and came

back with no positives for environmental allergies. This

is really perplexing considering how I feel, but maybe

not as it is all year round. I even keep the cat out of

my bed now but still feel horrible(supposedly have a

allergy to him..., maybe it's the dander holding on for

a while...) How does one understand all this

"inflammation" but nothing really to pin it on?

>

> - Finally, they have cultured pseucdomonas and

staph. Pseudomonas really scare me - I feel like I have

a chronic infection... Thanks for all the advice on this

and I'll be glad to hear more.

>

> - Anyone's doctor suspect fungal infection as well.

We went that route for a while no real change.

>

> Thanks for indulging me in this long email. I feel

that I am always "sick" and try to do my best. But it is

discouraging and frustrating... and as many say many do

not understand - although they try very hard. I feel

like they must think I'm crazy at times and I should

just try a decongestant (been there done that...). Just

a lonely disease if that is what you can call it.

>

> Sue

>

[Guest guest]

sure thing.. i'll search for it in my sent folder and try and forward it by tomorrow..From: Carl Ondry <ondry@...>samters Sent: Monday, August 1, 2011 10:33 PMSubject: Re: Re: Thanks and questions

Sabina,

I would very much like to see the cleanse diet. It would be helpful

to lot of us if you could post it.

Thanks,

Carl

On 8/1/2011 12:52 PM, sabina1003@... wrote:

Seeing my husband's results so far (knock on wood), it

definitely seems worth it. I don't know think he knew if

it was worth it either, until he did it. Its hard to know

if diet alone is enough, although we're positive it helped

immensely, because like I mentioned, he has been taking

supplements too. And now he's to the point of tapering off

some of those too. The cleanse is "only" six weeks

actually n then you can add things back in. I've witnessed

Mike give up all the things he loves: alcohol, cheese,

bread, coffee, sweets.... I actually sent the toxic

cleanse diet he has been on to another member here. If

you're interested I can forward it to you too.

His new Dr actually doesn't believe in allergies. He says

that its a matter of intolerances and that Mike obviously

has a lower tolerance for certain things. So maybe it

makes sense you tested neg for food allergies..

I think if you can find an integrative medicine doctor, it

might be a lot more helpful than a naturopath in this case

(no offense to them). Its just such a challenging issue.

So I guess he was taking pulmicort then Now he takes

Argentyn 23 instead.

Best,

Sabina

Sent from my Verizon Wireless BlackBerry

From: "teacher01"

<susandebisschop@...>

Sender: samters

Date: Mon, 01 Aug 2011 14:35:35 -0000

<samters >

Reply samters

Subject: Re: Thanks and questions

Good luck to your husband! He does sound similar! I'll

have to look into other eastern methods of treatment...

I have seen a naturopath in the past and she was

wonderful but I never saw any real improvement. I've

tried the elimination diet twice (no sugar, milk, wheat,

etc...) and no real improvement either. Maybe I'll try

that again. I do have a few weeks before school begins

again. It's just so tough with diet changes. But as

someone else said on here, it may be worth it. Not sure

about losing the chocolate though What stops me

sometimes is that I did have the blood test for food

allergies (a couple years ago it was new) and didn't

show any big reactions to anything. But I am convinced

it must be something.

I heard something once and I agree with it; if you have

minor allergies and then you put them all on top of

eachother then it becomes culumative and effects you

more. So if you have a minor dust allergy, and maybe

cat, etc... then maybe one minor food - that can all

accumulate I would guess!

Oh and Pulmicort is the same as budesonide.

Thanks for your story!

Sue

>

> My husband, Mike, seems to have a similar story..

His symptoms started in his early 20's. And asthma

symptoms came in his late 20's (he is now 33). When we

first started dating, I told him he "gurgled" in his

sleep. I have been wearing ear plugs for the past four

years, and feel guilty when the gurgling is so loud I

have to wake him up in the middle of the night to blow

his nose. This has been the case until very recently.

>

> He was desensitized over a year ago. Since then,

like clockwork, he has taken a tapering amount of

prednisone once a month, out of necessity to breath.

Because of what we understand about prednisone (although

to our surprise some folks in this group have done okay

on it longer term), it became a deal breaker in regards

to his treatment. My husband and I agreed that if one

more month passed that he had to take prednisone, he

would see an integrative medicine doctor who came highly

recommended. He is in the medical field and highly

skeptical about anything other than western meds and

approach to disease.

>

> Two months have passed since seeing this new dr,

and he cannot remember the last time he could breath for

two consecutive months (without prednisone, polypectomy,

surgery). It was through a diet cleanse, along with

supplements (I.e. Aller-c; olive leaf extract..) that he

can now breath like he has not since the onset! And I

haven't had to wear my ear plugs! There is still some

trial and error, but at least now through eating ultra

healthy and doing a diet detox, he can identify (and

accept that he cannot have) the triggers: wine, beer,

wheat, dairy, to name a few. Mike is still on the road

to recovery, but he has been able to lower his aspirin

dose and eliminate a couple of prescriptions from the

long list.

>

> I just strongly recommend to anyone facing this..or

at least those who haven't found something that works

for them.. to be open to trying to find an integrative

doc..someone who knows both western and eastern /

holistic practices. It does seem to be a challenge to

these alt med doctors, like western dr's, but they seem

more likely to look at the whole lifestyle of a

person..and his dr said that polyps are actually a sign

of a healthy individual because the body is trying to

get rid of toxins.

>

> Anyway, hope this story helps.

>

> Sabina

>

> P.s. He wasn't inhaling pulmacort directly, but he

was inhaling a vile of budesonide nightly while laying

down.

>

> Sent from my Verizon Wireless BlackBerry

>

> Thanks and questions

>

> Thanks for all the great information that you all

share. I have found it very useful and interesting. It's

nice to know that others out there share some of the

same difficulties.

>

> My story:

>

> - Developed Samter's in my early 20s (never had

allergies, etc... before)

> - Started having wheezing symptoms after taking

major doses of aspirin, etc.. for sinus headaches

> - I've had 4 sinus surgeres (including a frontal

obliteration which has been wonderful at reducing my

headaches)

> - I was in denial about having asthma (never

symptoms unless I took aspirin/nsaids; before pregnancy

had horrible asthma and afterwards too - now on Zyflo

successful in treating the asthma - doesn't seem to be

helping the polyps (and Singulair didn't either)

> - Also on Advair

> - Was desensitized, until pregnancy... haven't been

again as it didn't seem to help me

> - Was on low dose of prednisone for many years and

developed Adrenal insufficiency (the miracle and devil

drug...) Better now but weary about it - but it's the

only thing that helps with the inflammation.

>

> Questions:

>

> Anyone doing pulmicort respules directly into nose.

How can I do it more effectively (laying on bed upside

down...) I just have a hard time keeping up with it as

during the year I am a school teacher and these sinus

infections just take the life out of me. I feel like I

am always stressed at work and I am sure this

exacerbates my condition... I always want to nap; never

feel refreshed. I was using it in my neilmed rinse but

it wasn't working well enough. I am now on a pred. taper

(60 - 10 in 6 days) and hoping I can open my frontals

again as they were closed.

>

> I know it is important to keep this up, but any

ideas to help? I seem to get so little sleep with my

sinuses (I feel like water is gurgling all the time in

my nose - very loud - even ear plugs don't help hubby).

>

> - How do you cope better with loss of SOS? I hate

it to death. I find myself eating more. I love things

with texture now.... From your experience (other than

being on pred.) is there anything else that may help?

>

> - Anyone else look into eosinophils being high?

Churg Strauss or eosinophilia? Mine are okay right now.

>

> - I just had a recent skin test done again and came

back with no positives for environmental allergies. This

is really perplexing considering how I feel, but maybe

not as it is all year round. I even keep the cat out of

my bed now but still feel horrible(supposedly have a

allergy to him..., maybe it's the dander holding on for

a while...) How does one understand all this

"inflammation" but nothing really to pin it on?

>

> - Finally, they have cultured pseucdomonas and

staph. Pseudomonas really scare me - I feel like I have

a chronic infection... Thanks for all the advice on this

and I'll be glad to hear more.

>

> - Anyone's doctor suspect fungal infection as well.

We went that route for a while no real change.

>

> Thanks for indulging me in this long email. I feel

that I am always "sick" and try to do my best. But it is

discouraging and frustrating... and as many say many do

not understand - although they try very hard. I feel

like they must think I'm crazy at times and I should

just try a decongestant (been there done that...). Just

a lonely disease if that is what you can call it.

>

> Sue

>

[Guest guest]

I too would love to see/ try the cleanse diet would you please share that with me as well?Thank you Sent from my iPhoneOn Aug 2, 2011, at 1:37 AM, Sabina Lee Roth <sabina1003@...> wrote:

sure thing.. i'll search for it in my sent folder and try and forward it by tomorrow..From: Carl Ondry <ondry@...>samters Sent: Monday, August 1, 2011 10:33 PMSubject: Re: Re: Thanks and questions

Sabina,

I would very much like to see the cleanse diet. It would be helpful

to lot of us if you could post it.

Thanks,

Carl

On 8/1/2011 12:52 PM, sabina1003@... wrote:

Seeing my husband's results so far (knock on wood), it

definitely seems worth it. I don't know think he knew if

it was worth it either, until he did it. Its hard to know

if diet alone is enough, although we're positive it helped

immensely, because like I mentioned, he has been taking

supplements too. And now he's to the point of tapering off

some of those too. The cleanse is "only" six weeks

actually n then you can add things back in. I've witnessed

Mike give up all the things he loves: alcohol, cheese,

bread, coffee, sweets.... I actually sent the toxic

cleanse diet he has been on to another member here. If

you're interested I can forward it to you too.

His new Dr actually doesn't believe in allergies. He says

that its a matter of intolerances and that Mike obviously

has a lower tolerance for certain things. So maybe it

makes sense you tested neg for food allergies..

I think if you can find an integrative medicine doctor, it

might be a lot more helpful than a naturopath in this case

(no offense to them). Its just such a challenging issue.

So I guess he was taking pulmicort then Now he takes

Argentyn 23 instead.

Best,

Sabina

Sent from my Verizon Wireless BlackBerry

From: "teacher01"

<susandebisschop@...>

Sender: samters

Date: Mon, 01 Aug 2011 14:35:35 -0000

<samters >

Reply samters

Subject: Re: Thanks and questions

Good luck to your husband! He does sound similar! I'll

have to look into other eastern methods of treatment...

I have seen a naturopath in the past and she was

wonderful but I never saw any real improvement. I've

tried the elimination diet twice (no sugar, milk, wheat,

etc...) and no real improvement either. Maybe I'll try

that again. I do have a few weeks before school begins

again. It's just so tough with diet changes. But as

someone else said on here, it may be worth it. Not sure

about losing the chocolate though What stops me

sometimes is that I did have the blood test for food

allergies (a couple years ago it was new) and didn't

show any big reactions to anything. But I am convinced

it must be something.

I heard something once and I agree with it; if you have

minor allergies and then you put them all on top of

eachother then it becomes culumative and effects you

more. So if you have a minor dust allergy, and maybe

cat, etc... then maybe one minor food - that can all

accumulate I would guess!

Oh and Pulmicort is the same as budesonide.

Thanks for your story!

Sue

>

> My husband, Mike, seems to have a similar story..

His symptoms started in his early 20's. And asthma

symptoms came in his late 20's (he is now 33). When we

first started dating, I told him he "gurgled" in his

sleep. I have been wearing ear plugs for the past four

years, and feel guilty when the gurgling is so loud I

have to wake him up in the middle of the night to blow

his nose. This has been the case until very recently.

>

> He was desensitized over a year ago. Since then,

like clockwork, he has taken a tapering amount of

prednisone once a month, out of necessity to breath.

Because of what we understand about prednisone (although

to our surprise some folks in this group have done okay

on it longer term), it became a deal breaker in regards

to his treatment. My husband and I agreed that if one

more month passed that he had to take prednisone, he

would see an integrative medicine doctor who came highly

recommended. He is in the medical field and highly

skeptical about anything other than western meds and

approach to disease.

>

> Two months have passed since seeing this new dr,

and he cannot remember the last time he could breath for

two consecutive months (without prednisone, polypectomy,

surgery). It was through a diet cleanse, along with

supplements (I.e. Aller-c; olive leaf extract..) that he

can now breath like he has not since the onset! And I

haven't had to wear my ear plugs! There is still some

trial and error, but at least now through eating ultra

healthy and doing a diet detox, he can identify (and

accept that he cannot have) the triggers: wine, beer,

wheat, dairy, to name a few. Mike is still on the road

to recovery, but he has been able to lower his aspirin

dose and eliminate a couple of prescriptions from the

long list.

>

> I just strongly recommend to anyone facing this..or

at least those who haven't found something that works

for them.. to be open to trying to find an integrative

doc..someone who knows both western and eastern /

holistic practices. It does seem to be a challenge to

these alt med doctors, like western dr's, but they seem

more likely to look at the whole lifestyle of a

person..and his dr said that polyps are actually a sign

of a healthy individual because the body is trying to

get rid of toxins.

>

> Anyway, hope this story helps.

>

> Sabina

>

> P.s. He wasn't inhaling pulmacort directly, but he

was inhaling a vile of budesonide nightly while laying

down.

>

> Sent from my Verizon Wireless BlackBerry

>

> Thanks and questions

>

> Thanks for all the great information that you all

share. I have found it very useful and interesting. It's

nice to know that others out there share some of the

same difficulties.

>

> My story:

>

> - Developed Samter's in my early 20s (never had

allergies, etc... before)

> - Started having wheezing symptoms after taking

major doses of aspirin, etc.. for sinus headaches

> - I've had 4 sinus surgeres (including a frontal

obliteration which has been wonderful at reducing my

headaches)

> - I was in denial about having asthma (never

symptoms unless I took aspirin/nsaids; before pregnancy

had horrible asthma and afterwards too - now on Zyflo

successful in treating the asthma - doesn't seem to be

helping the polyps (and Singulair didn't either)

> - Also on Advair

> - Was desensitized, until pregnancy... haven't been

again as it didn't seem to help me

> - Was on low dose of prednisone for many years and

developed Adrenal insufficiency (the miracle and devil

drug...) Better now but weary about it - but it's the

only thing that helps with the inflammation.

>

> Questions:

>

> Anyone doing pulmicort respules directly into nose.

How can I do it more effectively (laying on bed upside

down...) I just have a hard time keeping up with it as

during the year I am a school teacher and these sinus

infections just take the life out of me. I feel like I

am always stressed at work and I am sure this

exacerbates my condition... I always want to nap; never

feel refreshed. I was using it in my neilmed rinse but

it wasn't working well enough. I am now on a pred. taper

(60 - 10 in 6 days) and hoping I can open my frontals

again as they were closed.

>

> I know it is important to keep this up, but any

ideas to help? I seem to get so little sleep with my

sinuses (I feel like water is gurgling all the time in

my nose - very loud - even ear plugs don't help hubby).

>

> - How do you cope better with loss of SOS? I hate

it to death. I find myself eating more. I love things

with texture now.... From your experience (other than

being on pred.) is there anything else that may help?

>

> - Anyone else look into eosinophils being high?

Churg Strauss or eosinophilia? Mine are okay right now.

>

> - I just had a recent skin test done again and came

back with no positives for environmental allergies. This

is really perplexing considering how I feel, but maybe

not as it is all year round. I even keep the cat out of

my bed now but still feel horrible(supposedly have a

allergy to him..., maybe it's the dander holding on for

a while...) How does one understand all this

"inflammation" but nothing really to pin it on?

>

> - Finally, they have cultured pseucdomonas and

staph. Pseudomonas really scare me - I feel like I have

a chronic infection... Thanks for all the advice on this

and I'll be glad to hear more.

>

> - Anyone's doctor suspect fungal infection as well.

We went that route for a while no real change.

>

> Thanks for indulging me in this long email. I feel

that I am always "sick" and try to do my best. But it is

discouraging and frustrating... and as many say many do

not understand - although they try very hard. I feel

like they must think I'm crazy at times and I should

just try a decongestant (been there done that...). Just

a lonely disease if that is what you can call it.

>

> Sue

>