Salicylate Sensitivity

[Guest guest]

Yes, we have. Once we discovered the sensitivity to the salicylates of my husband, he lived on a diet without any food containing this compound for about one or two years. That was not easy, and it is as well already a long time ago, so I do not remember what exactly I was cooking. As lover of the Italian cuisine, we had to stay away of tomatoes and all that could have benzoic acid in it .... well, yes, we had a lot of fresh prepared food on the table, no cans or preserved vegetables.

After about a year or so, I began to introduce again in tiny quantities veggies with salicylic acid, and today my husband can enjoy a Spagetti with tomatoe sauce meal without problems. Even a sip of beer or wine is fine, in case he has to drink at a business dinner. Nevertheless, he is carrying always an antihistamine with him, just in case a sneezing attack, or asthma, is triggered.

We figured this out long before someone told us about samters. This aspirin desensibilisation sounds intriguing ... much less hassle than an 'exclusion-diet', which has to be done at least six month before you can even think of looking at something containing salicylates. But thanks to this we live a more or less 'normal' life without having to swallow Aspirin every day.

Pat

salicylate sensitivity

I am intrigued by common symptoms posted by Ken West. Especially regarding his experience with Alka Seltzer. I've had asthma for 31 years, 5 sinus operations, and many other nasal problems including bouts of sneezing attacks. I only recently discovered (despite the expertise of many drs.) that I have samters triad. I am looking forward to the Scripps Aspirin challenge if I am physically able to participate. I lost my sense my sense of smell with the first operation but other than that I see that desensitization can be a life changing experience. It's nice to know I'm not the only one out there who has gone through these miserable symptoms. I'd like anyone to comment on salicylate sensitivity-common asthma triggers in foods, something I've never heard of. I've visited several links posted, but would like someone who has actual experience with salicylate sensitivity to comment.Has anyone had side effects with sugar free gum?ThanksAl

[Guest guest]

Hi Maggie, thank you for this. I too struggled with Sal sensitivity - that was one of my biggest problems in that I never knew when I would react badly to certain food - especially around Christmas lol! The one good thing from desens (sorrry to bring that up but it is relevant) is that it knocked my sal sensitivity on the head and I can eat and drink what I like with virtually no response. This site does sound useful. regards Becky Maggie <maggieuig1@...> wrote: Hi allI am a regular reader but don't post very often. I became sal.sensitive this year and have been struggling with that. I would guessthat there are a few more of us on this site as it is all connected.With the Samters it can make life a misery, A helpful site is salicylatesensitivity.comThey have a forum there too and some useful advice. I have found ithelpful. There are some people there with samters too.Maggie.

[Guest guest]

Hi BeckyI asked my allergist to desens me when I saw him in October but he refused saying that they only did it for people who had to take aspirin for medical reasons!!! If Samters isn't a medical reason I don't know what is!!Maggiesamters From: beckyb256@...Date: Wed, 10 Dec 2008 08:04:40 +0000Subject: Re: salicylate sensitivity

Hi Maggie, thank you for this. I too struggled with Sal sensitivity - that was one of my biggest problems in that I never knew when I would react badly to certain food - especially around Christmas lol! The one good thing from desens (sorrry to bring that up but it is relevant) is that it knocked my sal sensitivity on the head and I can eat and drink what I like with virtually no response. This site does sound useful. regards Becky Maggie <maggieuig1hotmail> wrote: Hi allI am a regular reader but don't post very often. I became sal.sensitive this year and have been struggling with that. I would guessthat there are a few more of us on this site as it is all connected.With the Samters it can make life a misery, A helpful site is salicylatesensitivity.comThey have a forum there too and some useful advice. I have found ithelpful. There are some people there with samters too.Maggie.

[Guest guest]

Hi Maggie, That is outrageous!!! I would change my allergist if I was you!! Seriously though, that is a pretty appauling atitude, and I'm sure you can come up with some reasons for needing to take aspirin - it is such a useful drug anyway. I wish you better luck, BeckyMargaret <maggieuig1@...> wrote: Hi BeckyI asked my allergist to desens me when I saw him in October but he refused saying that they only did it for people who had to take aspirin for medical reasons!!! If

Samters isn't a medical reason I don't know what is!!Maggie samters From: beckyb256 (DOT) co.ukDate: Wed, 10 Dec 2008 08:04:40 +0000Subject: Re: salicylate sensitivity Hi Maggie, thank you for this. I too struggled with Sal sensitivity - that was one of my biggest problems in that I never knew when I would react badly to certain food - especially around Christmas lol! The one good thing from desens (sorrry to bring that up but it is relevant) is that it knocked my sal sensitivity on the head and I can eat and drink what I like with virtually no response. This site does sound useful. regards Becky Maggie

<maggieuig1hotmail> wrote: Hi allI am a regular reader but don't post very often. I became sal.sensitive this year and have been struggling with that. I would guessthat there are a few more of us on this site as it is all connected.With the Samters it can make life a misery, A helpful site is salicylatesensitivity.comThey have a forum there too and some useful advice. I have found ithelpful. There are some people there with samters too.Maggie.

[Guest guest]

I agree, definitely change your allergist. Rather reminds me of

the physiotherapist who told me in prenatal classes about the ‘discomfort’ of

child birth. Absolutely no clue! So yes, I’m with Maggie, change your

allergist.

From: Bannister

[mailto:beckyb256@...]

Sent: Wednesday, 10 December 2008 8:29 PM

samters

Subject: RE: salicylate sensitivity

Hi Maggie,

That is outrageous!!! I would change my allergist if I was

you!! Seriously though, that is a pretty appauling atitude, and I'm sure you

can come up with some reasons for needing to take aspirin - it is such a useful

drug anyway.

I wish you better luck,

Becky

Margaret <maggieuig1@...> wrote:

Hi Becky

I asked my allergist to desens me when I saw him in October but he refused

saying that they only did it for people who had to take aspirin for medical

reasons!!! If Samters isn't a medical reason I don't know what is!!

Maggie

samters

From: beckyb256@...

Date: Wed, 10 Dec 2008 08:04:40 +0000

Subject: Re: salicylate sensitivity

Hi Maggie, thank you for this.

I too struggled with Sal sensitivity - that was one of my

biggest problems in that I never knew when I would react badly to certain food -

especially around Christmas lol!

The one good thing from desens (sorrry to bring that up but

it is relevant) is that it knocked my sal sensitivity on the head and I can eat

and drink what I like with virtually no response.

This site does sound useful.

regards

Becky

Maggie <maggieuig1@...> wrote:

Hi all

I am a regular reader but don't post very often. I became sal.

sensitive this year and have been struggling with that. I would guess

that there are a few more of us on this site as it is all connected.

With the Samters it can make life a misery,

A helpful site is

salicylatesensitivity.com

They have a forum there too and some useful advice. I have found it

helpful. There are some people there with samters too.

Maggie.

[Guest guest]

Hi Maggie,

I am the wife of a long time samters sufferer. was requiring increasing

frequent surgeries with increasing numbers of problem during surgery. I check

this site regularly for any information I can on new things to try. In the UK

the general answer from Medics is antihistamines, steroids, and repeated

surgery. was prescribed Singular after we heard about it here and asked

for it, the ENT consultant was not impressed by the leukotrine pathway and

relevant references had armed himself with - but prescribed it anyway.

has desperate to try anything to prevent polyp regrowth after his last

surgery, he was considering self desense but I managed to talk him out of that

as his only encounter with aspirin still the onset of his asthma resulting in

much time in A+E. He was also considering travelling to Scripts to get it done

if we could find anyone in the UK. He paid to see an allergist privately who

said he wouldn't do aspirin desensitization because " if he did and it worked

everyone would want it doing " !!!!!!!!!!

Finally we managed to get to see someone in pharmacology/toxicology and they

agreed to do it, here in Cardiff without having to travel miles. They used the

Scripts protocol (roughly) and after day2 left having taken 600mg without a

reaction and has continued on 600mg ever since. That has been about 8 months

now. Last ENT check showed no polyp growth yet.

Of course you can't tell whether its just coincidence but he does seem generally

healthier and happier than pre desense.

The moral of my e-mail is don't give up. Every samters sufferer responds in a

different way to each therapy. This site allows us to see what other people try

and decide if that would be worth trying for ourselves.

would not have discovered irrigation had it not been for this site - and

that is something I suspect all sufferers benefit from (I have to say I can not

be within hearing distance when he does it but I can tell if he has missed a

morning- it makes a huge difference. Thanks Ken for all the irrigation posts

when we first found the site).

Desense is not for everyone but it does answer some of the problems for some.

This includes removing the need to stick to a low salicylate diet. Good luck,

don't give up the search for a doctor that understands, there are some out

there!

Mandy

[Guest guest]

Hello Mandy

I do not want to come across as someone who opposes desensitization,

but in the seven years that I have been watching this forum, I have

sensed that, while most profess improved wellbeing, few actually come

forward and state that there has been a cure.

OK, so you one can now withstand accidental ingestion of aspirin, but

can you eat what you want and live a truly improved lifestyle.

Also, I am not attracted to the fact that if the dose is lapsed, you

have to start again,.

Ken has pointed out that I could have, like your husband, found

someone to carry out this procedure, but for the above reasons I

would not seek private treatment.

Now, back to the point of my post. Did get much benefit from

the Singulair?

After a decade of rampant growth, I attribute the current remission

of my poyps to starting on this drug. Perhaps another fortuitous

coincidence?

Regards

>

> Hi Maggie,

>

> I am the wife of a long time samters sufferer. was requiring

increasing frequent surgeries with increasing numbers of problem

during surgery. I check this site regularly for any information I

can on new things to try. In the UK the general answer from Medics

is antihistamines, steroids, and repeated surgery. was

prescribed Singular after we heard about it here and asked for it,

the ENT consultant was not impressed by the leukotrine pathway and

relevant references had armed himself with - but prescribed it

anyway.

> has desperate to try anything to prevent polyp regrowth after

his last surgery, he was considering self desense but I managed to

talk him out of that as his only encounter with aspirin still the

onset of his asthma resulting in much time in A+E. He was also

considering travelling to Scripts to get it done if we could find

anyone in the UK. He paid to see an allergist privately who said he

wouldn't do aspirin desensitization because " if he did and it worked

everyone would want it doing " !!!!!!!!!!

>

> Finally we managed to get to see someone in

pharmacology/toxicology and they agreed to do it, here in Cardiff

without having to travel miles. They used the Scripts protocol

(roughly) and after day2 left having taken 600mg without a

reaction and has continued on 600mg ever since. That has been about

8 months now. Last ENT check showed no polyp growth yet.

> Of course you can't tell whether its just coincidence but he does

seem generally healthier and happier than pre desense.

>

> The moral of my e-mail is don't give up. Every samters sufferer

responds in a different way to each therapy. This site allows us to

see what other people try and decide if that would be worth trying

for ourselves.

> would not have discovered irrigation had it not been for this

site - and that is something I suspect all sufferers benefit from (I

have to say I can not be within hearing distance when he does it but

I can tell if he has missed a morning- it makes a huge difference.

Thanks Ken for all the irrigation posts when we first found the site).

>

> Desense is not for everyone but it does answer some of the problems

for some. This includes removing the need to stick to a low

salicylate diet. Good luck, don't give up the search for a doctor

that understands, there are some out there!

>

> Mandy

>

[Guest guest]

Hi ,

I was desensed in April 2008. I had a check-up on it yesterday. Definitely I have had a noticeable improvement. Less infections. Not so many nights with a non-stop dripping nose. Polyps do come back.....but not so many of them and they go with less prednisone. I am on Singulair. I think that helps as I had it before desense. But my overall condition is so much better. PLUS I can take aspirin if I need it for other conditions.

I would reccomend it. I can eat what I want.

Re: salicylate sensitivity

Hello Mandy

I do not want to come across as someone who opposes desensitization,

but in the seven years that I have been watching this forum, I have

sensed that, while most profess improved wellbeing, few actually come

forward and state that there has been a cure.

OK, so you one can now withstand accidental ingestion of aspirin, but

can you eat what you want and live a truly improved lifestyle.

Also, I am not attracted to the fact that if the dose is lapsed, you

have to start again,.

Ken has pointed out that I could have, like your husband, found

someone to carry out this procedure, but for the above reasons I

would not seek private treatment.

Now, back to the point of my post. Did get much benefit from

the Singulair?

After a decade of rampant growth, I attribute the current remission

of my poyps to starting on this drug. Perhaps another fortuitous

coincidence?

Regards

>

> Hi Maggie,

>

> I am the wife of a long time samters sufferer. was requiring

increasing frequent surgeries with increasing numbers of problem

during surgery. I check this site regularly for any information I

can on new things to try. In the UK the general answer from Medics

is antihistamines, steroids, and repeated surgery. was

prescribed Singular after we heard about it here and asked for it,

the ENT consultant was not impressed by the leukotrine pathway and

relevant references had armed himself with - but prescribed it

anyway.

> has desperate to try anything to prevent polyp regrowth after

his last surgery, he was considering self desense but I managed to

talk him out of that as his only encounter with aspirin still the

onset of his asthma resulting in much time in A+E. He was also

considering travelling to Scripts to get it done if we could find

anyone in the UK. He paid to see an allergist privately who said he

wouldn't do aspirin desensitization because "if he did and it worked

everyone would want it doing"!!!!!!!!!!

>

> Finally we managed to get to see someone in

pharmacology/toxicology and they agreed to do it, here in Cardiff

without having to travel miles. They used the Scripts protocol

(roughly) and after day2 left having taken 600mg without a

reaction and has continued on 600mg ever since. That has been about

8 months now. Last ENT check showed no polyp growth yet.

> Of course you can't tell whether its just coincidence but he does

seem generally healthier and happier than pre desense.

>

> The moral of my e-mail is don't give up. Every samters sufferer

responds in a different way to each therapy. This site allows us to

see what other people try and decide if that would be worth trying

for ourselves.

> would not have discovered irrigation had it not been for this

site - and that is something I suspect all sufferers benefit from (I

have to say I can not be within hearing distance when he does it but

I can tell if he has missed a morning- it makes a huge difference.

Thanks Ken for all the irrigation posts when we first found the site).

>

> Desense is not for everyone but it does answer some of the problems

for some. This includes removing the need to stick to a low

salicylate diet. Good luck, don't give up the search for a doctor

that understands, there are some out there!

>

> Mandy

>

Listen to 350+ music, sports, news radio stations including songs for the holidays FREE while you browse. Start Listening Now!

[Guest guest]

Hello all

I found this paper this evening that provides some background to the variablity of outcome when treating patients. Look at sections 6 & 7 in particular. http://www.bapo.org.uk/8th_ESPO/data/pdf/2750.pdf It dates back to 2003 and sadly little seems to have moved on since then.

My course of Singulair starts in about a fortnight so I will keep you informed.

Mike

samters From: stoneywood21@...Date: Thu, 11 Dec 2008 18:21:21 +0000Subject: Re: salicylate sensitivity

Hello MandyI do not want to come across as someone who opposes desensitization, but in the seven years that I have been watching this forum, I have sensed that, while most profess improved wellbeing, few actually come forward and state that there has been a cure. OK, so you one can now withstand accidental ingestion of aspirin, but can you eat what you want and live a truly improved lifestyle.Also, I am not attracted to the fact that if the dose is lapsed, you have to start again,.Ken has pointed out that I could have, like your husband, found someone to carry out this procedure, but for the above reasons I would not seek private treatment.Now, back to the point of my post. Did get much benefit from the Singulair? After a decade of rampant growth, I attribute the current remission of my poyps to starting on this drug. Perhaps another fortuitous coincidence?Regards >> Hi Maggie,> > I am the wife of a long time samters sufferer. was requiring increasing frequent surgeries with increasing numbers of problem during surgery. I check this site regularly for any information I can on new things to try. In the UK the general answer from Medics is antihistamines, steroids, and repeated surgery. was prescribed Singular after we heard about it here and asked for it, the ENT consultant was not impressed by the leukotrine pathway and relevant references had armed himself with - but prescribed it anyway. > has desperate to try anything to prevent polyp regrowth after his last surgery, he was considering self desense but I managed to talk him out of that as his only encounter with aspirin still the onset of his asthma resulting in much time in A+E. He was also considering travelling to Scripts to get it done if we could find anyone in the UK. He paid to see an allergist privately who said he wouldn't do aspirin desensitization because "if he did and it worked everyone would want it doing"!!!!!!!!!! > > Finally we managed to get to see someone in pharmacology/toxicology and they agreed to do it, here in Cardiff without having to travel miles. They used the Scripts protocol (roughly) and after day2 left having taken 600mg without a reaction and has continued on 600mg ever since. That has been about 8 months now. Last ENT check showed no polyp growth yet.> Of course you can't tell whether its just coincidence but he does seem generally healthier and happier than pre desense.> > The moral of my e-mail is don't give up. Every samters sufferer responds in a different way to each therapy. This site allows us to see what other people try and decide if that would be worth trying for ourselves. > would not have discovered irrigation had it not been for this site - and that is something I suspect all sufferers benefit from (I have to say I can not be within hearing distance when he does it but I can tell if he has missed a morning- it makes a huge difference. Thanks Ken for all the irrigation posts when we first found the site).> > Desense is not for everyone but it does answer some of the problems for some. This includes removing the need to stick to a low salicylate diet. Good luck, don't give up the search for a doctor that understands, there are some out there!> > Mandy> Great search results, great prizes. BigSnapSearch.com Search now

[Guest guest]

Hello and all,

I don't post very often but have been reading for 6 years. I have been

cured. My symptoms were diagnosed 10 years ago. I had always had

allergies. My sense of smell was so long gone, I didn't even miss it

anymore. I had three surgeries in 5 years. I was hospitalized once for

uncontrollable asthma.

I didn't respond to Advair or Singulair. I did to prednisone, theophylin,

Zyflo, albuterol, caffeine, vitamin C.

I spent my second pregnancy on monthly prednisone bursts along with the

doctor's beratement for being that bad off.

My husband was an EMT so I had access to a pulse-ox and oxygen. I struggled

to get my pulse below my O2 saturation. I slept with oxygen every night.

The time I went into the hospital, I was taking nebulizer with oxygen and

double strength albuterol and still my O2 was down to 68.

I had to quit work as a home builder. I couldn¹t walk down the cleaning

isle in the grocery store. I would react to MSG, sulfites, and Yellow #5.

I have gone through everything. Acupuncture, therapy, diets, some weird

stuff too. I have cleaned my house and diet. I have no carpet and a whole

house HEPA filter. I avoid toxins but have not reacted to some surprises.

Yeah!

I take aspirin, nasonex, astilin (as needed), albuterol (one canister will

last me a year) and aciphex. I have learned to anticipate and medicate my

problems early, on the first sign.

I have a sense of smell and my 6 year old son can't remember that I was ever

sick although he does know that we will never own a pet because of my

allergies. My last surgery was in 2002. I can visit the dangerous triggers

but I don't hang out. I haven't had an asthma attack in years. I do still

sneeze in the morning sometimes and irrigate with my Grossan.

Questions are welcome if I wasn't clear. My spell check is unhappy, so

forgive.

Pam

On 12/11/08 1:21 PM, " Belbin " <stoneywood21@...> wrote:

> Hello Mandy

> I do not want to come across as someone who opposes desensitization,

> but in the seven years that I have been watching this forum, I have

> sensed that, while most profess improved wellbeing, few actually come

> forward and state that there has been a cure.

> OK, so you one can now withstand accidental ingestion of aspirin, but

> can you eat what you want and live a truly improved lifestyle.

> Also, I am not attracted to the fact that if the dose is lapsed, you

> have to start again,.

> Ken has pointed out that I could have, like your husband, found

> someone to carry out this procedure, but for the above reasons I

> would not seek private treatment.

>

> Now, back to the point of my post. Did get much benefit from

> the Singulair?

> After a decade of rampant growth, I attribute the current remission

> of my poyps to starting on this drug. Perhaps another fortuitous

> coincidence?

> Regards

>

>

>>

>> Hi Maggie,

>>

>> I am the wife of a long time samters sufferer. was requiring

> increasing frequent surgeries with increasing numbers of problem

> during surgery. I check this site regularly for any information I

> can on new things to try. In the UK the general answer from Medics

> is antihistamines, steroids, and repeated surgery. was

> prescribed Singular after we heard about it here and asked for it,

> the ENT consultant was not impressed by the leukotrine pathway and

> relevant references had armed himself with - but prescribed it

> anyway.

>> has desperate to try anything to prevent polyp regrowth after

> his last surgery, he was considering self desense but I managed to

> talk him out of that as his only encounter with aspirin still the

> onset of his asthma resulting in much time in A+E. He was also

> considering travelling to Scripts to get it done if we could find

> anyone in the UK. He paid to see an allergist privately who said he

> wouldn't do aspirin desensitization because " if he did and it worked

> everyone would want it doing " !!!!!!!!!!

>>

>> Finally we managed to get to see someone in

> pharmacology/toxicology and they agreed to do it, here in Cardiff

> without having to travel miles. They used the Scripts protocol

> (roughly) and after day2 left having taken 600mg without a

> reaction and has continued on 600mg ever since. That has been about

> 8 months now. Last ENT check showed no polyp growth yet.

>> Of course you can't tell whether its just coincidence but he does

> seem generally healthier and happier than pre desense.

>>

>> The moral of my e-mail is don't give up. Every samters sufferer

> responds in a different way to each therapy. This site allows us to

> see what other people try and decide if that would be worth trying

> for ourselves.

>> would not have discovered irrigation had it not been for this

> site - and that is something I suspect all sufferers benefit from (I

> have to say I can not be within hearing distance when he does it but

> I can tell if he has missed a morning- it makes a huge difference.

> Thanks Ken for all the irrigation posts when we first found the site).

>>

>> Desense is not for everyone but it does answer some of the problems

> for some. This includes removing the need to stick to a low

> salicylate diet. Good luck, don't give up the search for a doctor

> that understands, there are some out there!

>>

>> Mandy

>>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Hi Pam! It's good to hear from you again, and it's really great to hear that with the right lifestyle and medication you have overcome the worst of this disease. Thank you for posting again and I wish you well with your continued good health, Becky xPam <pam@...> wrote: Hello and all,I don't post very often but have been reading for 6 years. I have beencured. My symptoms were diagnosed 10 years ago. I had always

hadallergies. My sense of smell was so long gone, I didn't even miss itanymore. I had three surgeries in 5 years. I was hospitalized once foruncontrollable asthma.I didn't respond to Advair or Singulair. I did to prednisone, theophylin,Zyflo, albuterol, caffeine, vitamin C.I spent my second pregnancy on monthly prednisone bursts along with thedoctor's beratement for being that bad off.My husband was an EMT so I had access to a pulse-ox and oxygen. I struggledto get my pulse below my O2 saturation. I slept with oxygen every night.The time I went into the hospital, I was taking nebulizer with oxygen anddouble strength albuterol and still my O2 was down to 68.I had to quit work as a home builder. I couldn¹t walk down the cleaningisle in the grocery store. I would react to MSG, sulfites, and Yellow #5.I have gone through everything. Acupuncture, therapy, diets, some weirdstuff too. I have cleaned

my house and diet. I have no carpet and a wholehouse HEPA filter. I avoid toxins but have not reacted to some surprises.Yeah!I take aspirin, nasonex, astilin (as needed), albuterol (one canister willlast me a year) and aciphex. I have learned to anticipate and medicate myproblems early, on the first sign.I have a sense of smell and my 6 year old son can't remember that I was eversick although he does know that we will never own a pet because of myallergies. My last surgery was in 2002. I can visit the dangerous triggersbut I don't hang out. I haven't had an asthma attack in years. I do stillsneeze in the morning sometimes and irrigate with my Grossan.Questions are welcome if I wasn't clear. My spell check is unhappy, soforgive.PamOn 12/11/08 1:21 PM, " Belbin" <stoneywood21aol> wrote:> Hello Mandy> I do not want to

come across as someone who opposes desensitization,> but in the seven years that I have been watching this forum, I have> sensed that, while most profess improved wellbeing, few actually come> forward and state that there has been a cure.> OK, so you one can now withstand accidental ingestion of aspirin, but> can you eat what you want and live a truly improved lifestyle.> Also, I am not attracted to the fact that if the dose is lapsed, you> have to start again,.> Ken has pointed out that I could have, like your husband, found> someone to carry out this procedure, but for the above reasons I> would not seek private treatment.> > Now, back to the point of my post. Did get much benefit from> the Singulair? > After a decade of rampant growth, I attribute the current remission> of my poyps to starting on this drug. Perhaps another fortuitous> coincidence?>

Regards > > >> >> Hi Maggie,>> >> I am the wife of a long time samters sufferer. was requiring> increasing frequent surgeries with increasing numbers of problem> during surgery. I check this site regularly for any information I> can on new things to try. In the UK the general answer from Medics> is antihistamines, steroids, and repeated surgery. was> prescribed Singular after we heard about it here and asked for it,> the ENT consultant was not impressed by the leukotrine pathway and> relevant references had armed himself with - but prescribed it> anyway. >> has desperate to try anything to prevent polyp regrowth after> his last surgery, he was considering self desense but I managed to> talk

him out of that as his only encounter with aspirin still the> onset of his asthma resulting in much time in A+E. He was also> considering travelling to Scripts to get it done if we could find> anyone in the UK. He paid to see an allergist privately who said he> wouldn't do aspirin desensitization because "if he did and it worked> everyone would want it doing"!!!!!!!!!!>> >> Finally we managed to get to see someone in> pharmacology/toxicology and they agreed to do it, here in Cardiff> without having to travel miles. They used the Scripts protocol> (roughly) and after day2 left having taken 600mg without a> reaction and has continued on 600mg ever since. That has been about> 8 months now. Last ENT check showed no polyp growth yet.>> Of course you can't tell whether its just coincidence but he does> seem generally healthier and happier than pre

desense.>> >> The moral of my e-mail is don't give up. Every samters sufferer> responds in a different way to each therapy. This site allows us to> see what other people try and decide if that would be worth trying> for ourselves. >> would not have discovered irrigation had it not been for this> site - and that is something I suspect all sufferers benefit from (I> have to say I can not be within hearing distance when he does it but> I can tell if he has missed a morning- it makes a huge difference.> Thanks Ken for all the irrigation posts when we first found the site).>> >> Desense is not for everyone but it does answer some of the problems> for some. This includes removing the need to stick to a low> salicylate diet. Good luck, don't give up the search for a doctor> that understands, there are some out there!>> >>

Mandy>> > > > > ------------------------------------> >

[Guest guest]

Thank you Pam for these good news, it shows perseverance does pay in the

end.

From your chronology, it looks like your last surgery happened about the

time things started to improve.

For the sake of precision only :

- astilin is Astelin, an anti-histamine,

- Aciphex is rabeprazole sodium, a proton-pump inhibitor (PPI) against

acid reflux. PPIs may have side-effects on the long term, but they turn

out to help quite a few chronic sinusitis patients.

> >>

> >> Hi Maggie,

> >>

> >> I am the wife of a long time samters sufferer. was requiring

> > increasing frequent surgeries with increasing numbers of problem

> > during surgery. I check this site regularly for any information I

> > can on new things to try. In the UK the general answer from Medics

> > is antihistamines, steroids, and repeated surgery. was

> > prescribed Singular after we heard about it here and asked for it,

> > the ENT consultant was not impressed by the leukotrine pathway and

> > relevant references had armed himself with - but prescribed it

> > anyway.

> >> has desperate to try anything to prevent polyp regrowth after

> > his last surgery, he was considering self desense but I managed to

> > talk him out of that as his only encounter with aspirin still the

> > onset of his asthma resulting in much time in A+E. He was also

> > considering travelling to Scripts to get it done if we could find

> > anyone in the UK. He paid to see an allergist privately who said

he

> > wouldn't do aspirin desensitization because " if he did and it worked

> > everyone would want it doing " !!!!!!!!!!

> >>

> >> Finally we managed to get to see someone in

> > pharmacology/toxicology and they agreed to do it, here in Cardiff

> > without having to travel miles. They used the Scripts protocol

> > (roughly) and after day2 left having taken 600mg without a

> > reaction and has continued on 600mg ever since. That has been about

> > 8 months now. Last ENT check showed no polyp growth yet.

> >> Of course you can't tell whether its just coincidence but he does

> > seem generally healthier and happier than pre desense.

> >>

> >> The moral of my e-mail is don't give up. Every samters sufferer

> > responds in a different way to each therapy. This site allows us to

> > see what other people try and decide if that would be worth trying

> > for ourselves.

> >> would not have discovered irrigation had it not been for this

> > site - and that is something I suspect all sufferers benefit from (I

> > have to say I can not be within hearing distance when he does it but

> > I can tell if he has missed a morning- it makes a huge difference.

> > Thanks Ken for all the irrigation posts when we first found the

site).

> >>

> >> Desense is not for everyone but it does answer some of the problems

> > for some. This includes removing the need to stick to a low

> > salicylate diet. Good luck, don't give up the search for a doctor

> > that understands, there are some out there!

> >>

> >> Mandy

> >>

> >

> >

> >

> > ------------------------------------

> >

> >

[Guest guest]

What are the long term effects of rabeprazole sodium? I've been taking it

for a year and it works well. I did try some time off because I have gained

a few pounds, but I felt the acid come back after a week.

Also, what is your first name? I don't recall seeing a signature.

Pam

On 12/12/08 3:24 AM, " asfyso " <asfyso@...> wrote:

> Thank you Pam for these good news, it shows perseverance does pay in the

> end.

> From your chronology, it looks like your last surgery happened about the

> time things started to improve.

>

> For the sake of precision only :

> - astilin is Astelin, an anti-histamine,

> - Aciphex is rabeprazole sodium, a proton-pump inhibitor (PPI) against

> acid reflux. PPIs may have side-effects on the long term, but they turn

> out to help quite a few chronic sinusitis patients.

>

>

>>>>

>>>> Hi Maggie,

>>>>

>>>> I am the wife of a long time samters sufferer. was requiring

>>> increasing frequent surgeries with increasing numbers of problem

>>> during surgery. I check this site regularly for any information I

>>> can on new things to try. In the UK the general answer from Medics

>>> is antihistamines, steroids, and repeated surgery. was

>>> prescribed Singular after we heard about it here and asked for it,

>>> the ENT consultant was not impressed by the leukotrine pathway and

>>> relevant references had armed himself with - but prescribed it

>>> anyway.

>>>> has desperate to try anything to prevent polyp regrowth after

>>> his last surgery, he was considering self desense but I managed to

>>> talk him out of that as his only encounter with aspirin still the

>>> onset of his asthma resulting in much time in A+E. He was also

>>> considering travelling to Scripts to get it done if we could find

>>> anyone in the UK. He paid to see an allergist privately who said

> he

>>> wouldn't do aspirin desensitization because " if he did and it worked

>>> everyone would want it doing " !!!!!!!!!!

>>>>

>>>> Finally we managed to get to see someone in

>>> pharmacology/toxicology and they agreed to do it, here in Cardiff

>>> without having to travel miles. They used the Scripts protocol

>>> (roughly) and after day2 left having taken 600mg without a

>>> reaction and has continued on 600mg ever since. That has been about

>>> 8 months now. Last ENT check showed no polyp growth yet.

>>>> Of course you can't tell whether its just coincidence but he does

>>> seem generally healthier and happier than pre desense.

>>>>

>>>> The moral of my e-mail is don't give up. Every samters sufferer

>>> responds in a different way to each therapy. This site allows us to

>>> see what other people try and decide if that would be worth trying

>>> for ourselves.

>>>> would not have discovered irrigation had it not been for this

>>> site - and that is something I suspect all sufferers benefit from (I

>>> have to say I can not be within hearing distance when he does it but

>>> I can tell if he has missed a morning- it makes a huge difference.

>>> Thanks Ken for all the irrigation posts when we first found the

> site).

>>>>

>>>> Desense is not for everyone but it does answer some of the problems

>>> for some. This includes removing the need to stick to a low

>>> salicylate diet. Good luck, don't give up the search for a doctor

>>> that understands, there are some out there!

>>>>

>>>> Mandy

>>>>

>>>

>>>

>>>

>>> ------------------------------------

>>>

>>>

[Guest guest]

I have begun checking but must stop for now and will post a more

detailed review tomorrow ; rabeprazole is quite safe, even over a year,

but a (very?) small number of patients may experience side effects,

including serious ones (that threatened to be the case with someone I

know, which is why I was a bit cautious about PPIs).

> >>>>

> >>>> Hi Maggie,

> >>>>

> >>>> I am the wife of a long time samters sufferer. was

requiring

> >>> increasing frequent surgeries with increasing numbers of problem

> >>> during surgery. I check this site regularly for any information I

> >>> can on new things to try. In the UK the general answer from

Medics

> >>> is antihistamines, steroids, and repeated surgery. was

> >>> prescribed Singular after we heard about it here and asked for it,

> >>> the ENT consultant was not impressed by the leukotrine pathway and

> >>> relevant references had armed himself with - but prescribed

it

> >>> anyway.

> >>>> has desperate to try anything to prevent polyp regrowth

after

> >>> his last surgery, he was considering self desense but I managed to

> >>> talk him out of that as his only encounter with aspirin still the

> >>> onset of his asthma resulting in much time in A+E. He was also

> >>> considering travelling to Scripts to get it done if we could find

> >>> anyone in the UK. He paid to see an allergist privately who said

> > he

> >>> wouldn't do aspirin desensitization because " if he did and it

worked

> >>> everyone would want it doing " !!!!!!!!!!

> >>>>

> >>>> Finally we managed to get to see someone in

> >>> pharmacology/toxicology and they agreed to do it, here in Cardiff

> >>> without having to travel miles. They used the Scripts protocol

> >>> (roughly) and after day2 left having taken 600mg without a

> >>> reaction and has continued on 600mg ever since. That has been

about

> >>> 8 months now. Last ENT check showed no polyp growth yet.

> >>>> Of course you can't tell whether its just coincidence but he does

> >>> seem generally healthier and happier than pre desense.

> >>>>

> >>>> The moral of my e-mail is don't give up. Every samters sufferer

> >>> responds in a different way to each therapy. This site allows us

to

> >>> see what other people try and decide if that would be worth trying

> >>> for ourselves.

> >>>> would not have discovered irrigation had it not been for

this

> >>> site - and that is something I suspect all sufferers benefit from

(I

> >>> have to say I can not be within hearing distance when he does it

but

> >>> I can tell if he has missed a morning- it makes a huge difference.

> >>> Thanks Ken for all the irrigation posts when we first found the

> > site).

> >>>>

> >>>> Desense is not for everyone but it does answer some of the

problems

> >>> for some. This includes removing the need to stick to a low

> >>> salicylate diet. Good luck, don't give up the search for a doctor

> >>> that understands, there are some out there!

> >>>>

> >>>> Mandy

> >>>>

> >>>

> >>>

> >>>

> >>> ------------------------------------

> >>>

> >>>

[Guest guest]

I was wondering if anyone could explain Distaclor. My husband was initially on Distaclor interspersed with Flagyl for 10 months. When he stopped taking this antibiotic within 8 weeks he was hospitalised with pneumonia. He is now on Distaclor for 7 months and is doing okay even though he has had a couple of infections. I think much of his problems stem from the fact that during one polypectomy his turbinates were straightened and resulted in blocking his sinus drainage passages. It was 8 years before this error was found, in the meantime he was getting sicker and sicker. The surgeon who made the discovery told us that he would not have seen his 50th birthday and would most likely have died from meningitis due to the thinning of his cribriform plate. He also has a monoclonal

immunglobulin (IgG Kappa)- we have been told that this could be a carcinogenic indicator or is a sign of infection. Whatever the reason it is still there.I just find this whole disease all consuming. My husband likes to block it/not talk about it out as much as possible. We have had 8 horrible years - with one infection following another. Dr. Scadding has started desens. However, for us this is a very slow process. My husband reacted to 15mg so is extremely sensitive. I use this site to try and find any nugget of info that can help us and welcome any snippet of information. So thanks to all of you, for a very long time we were on our own but now don't feel so isolated.BredaP.S. In a rush not proof read. From: asfyso <asfyso@...>samters Sent: Friday, December 12, 2008 8:24:06 AMSubject: Re: salicylate sensitivity

Thank you Pam for these good news, it shows perseverance does pay in the

end.

From your chronology, it looks like your last surgery happened about the

time things started to improve.

For the sake of precision only :

- astilin is Astelin, an anti-histamine,

- Aciphex is rabeprazole sodium, a proton-pump inhibitor (PPI) against

acid reflux. PPIs may have side-effects on the long term, but they turn

out to help quite a few chronic sinusitis patients.

> >>

> >> Hi Maggie,

> >>

> >> I am the wife of a long time samters sufferer. was requiring

> > increasing frequent surgeries with increasing numbers of problem

> > during surgery. I check this site regularly for any information I

> > can on new things to try. In the UK the general answer from Medics

> > is antihistamines, steroids, and repeated surgery. was

> > prescribed Singular after we heard about it here and asked for it,

> > the ENT consultant was not impressed by the leukotrine pathway and

> > relevant references had armed himself with - but prescribed it

> > anyway.

> >> has desperate to try anything to prevent polyp regrowth after

> > his last surgery, he was considering self desense but I managed to

> > talk him out of that as his only encounter with aspirin still the

> > onset of his asthma resulting in much time in A+E. He was also

> > considering travelling to Scripts to get it done if we could find

> > anyone in the UK. He paid to see an allergist privately who said

he

> > wouldn't do aspirin desensitization because "if he did and it worked

> > everyone would want it doing"!!!!!! !!!!

> >>

> >> Finally we managed to get to see someone in

> > pharmacology/ toxicology and they agreed to do it, here in Cardiff

> > without having to travel miles. They used the Scripts protocol

> > (roughly) and after day2 left having taken 600mg without a

> > reaction and has continued on 600mg ever since. That has been about

> > 8 months now. Last ENT check showed no polyp growth yet.

> >> Of course you can't tell whether its just coincidence but he does

> > seem generally healthier and happier than pre desense.

> >>

> >> The moral of my e-mail is don't give up. Every samters sufferer

> > responds in a different way to each therapy. This site allows us to

> > see what other people try and decide if that would be worth trying

> > for ourselves.

> >> would not have discovered irrigation had it not been for this

> > site - and that is something I suspect all sufferers benefit from (I

> > have to say I can not be within hearing distance when he does it but

> > I can tell if he has missed a morning- it makes a huge difference.

> > Thanks Ken for all the irrigation posts when we first found the

site).

> >>

> >> Desense is not for everyone but it does answer some of the problems

> > for some. This includes removing the need to stick to a low

> > salicylate diet. Good luck, don't give up the search for a doctor

> > that understands, there are some out there!

> >>

> >> Mandy

> >>

> >

> >

> >

> > ------------ --------- --------- ------

> >

> >

[Guest guest]

hi pam .. you say in your first paragraph that you have been cured .. was it the combo of drugs etc that worked .. i am a little confused .. please elaborate .. i am a thirty yr sufferer .. was told i have samters .. i have reoccurring nasal polyps, 4 surgeries in 7 yrs .. allergies .. had 12yrs of allergy shots .. asthma .. but i do not have allergy to aspirin .. i am currently taking 1300mg aspirin daily .. for about a month now .. i use nasonex and allegra d .. also advair 250/50 every other nite .. i would love my sense of smell back .. even a faint bit .. its been gone for 16yrs .. most of all i would like to keep my polyps from reoccuring so fast .. any advice from you or anyone else reading would be greatly appreciated

Re: Re: salicylate sensitivity

Hello and all,I don't post very often but have been reading for 6 years. I have beencured. My symptoms were diagnosed 10 years ago. I had always hadallergies. My sense of smell was so long gone, I didn't even miss itanymore. I had three surgeries in 5 years. I was hospitalized once foruncontrollable asthma.I didn't respond to Advair or Singulair. I did to prednisone, theophylin,Zyflo, albuterol, caffeine, vitamin C.I spent my second pregnancy on monthly prednisone bursts along with thedoctor's beratement for being that bad off.My husband was an EMT so I had access to a pulse-ox and oxygen. I struggledto get my pulse below my O2 saturation. I slept with oxygen every night.The time I went into the hospital, I was taking nebulizer with oxygen anddouble strength albuterol and still my O2 was down to 68.I had to quit work as a home builder. I couldn¹t walk down the cleaningisle in the grocery store. I would react to MSG, sulfites, and Yellow #5.I have gone through everything. Acupuncture, therapy, diets, some weirdstuff too. I have cleaned my house and diet. I have no carpet and a wholehouse HEPA filter. I avoid toxins but have not reacted to some surprises.Yeah!I take aspirin, nasonex, astilin (as needed), albuterol (one canister willlast me a year) and aciphex. I have learned to anticipate and medicate myproblems early, on the first sign.I have a sense of smell and my 6 year old son can't remember that I was eversick although he does know that we will never own a pet because of myallergies. My last surgery was in 2002. I can visit the dangerous triggersbut I don't hang out. I haven't had an asthma attack in years. I do stillsneeze in the morning sometimes and irrigate with my Grossan.Questions are welcome if I wasn't clear. My spell check is unhappy, soforgive.PamOn 12/11/08 1:21 PM, " Belbin" <stoneywood21aol> wrote:> Hello Mandy> I do not want to come across as someone who opposes desensitization,> but in the seven years that I have been watching this forum, I have> sensed that, while most profess improved wellbeing, few actually come> forward and state that there has been a cure.> OK, so you one can now withstand accidental ingestion of aspirin, but> can you eat what you want and live a truly improved lifestyle.> Also, I am not attracted to the fact that if the dose is lapsed, you> have to start again,.> Ken has pointed out that I could have, like your husband, found> someone to carry out this procedure, but for the above reasons I> would not seek private treatment.> > Now, back to the point of my post. Did get much benefit from> the Singulair? > After a decade of rampant growth, I attribute the current remission> of my poyps to starting on this drug. Perhaps another fortuitous> coincidence?> Regards > > >> >> Hi Maggie,>> >> I am the wife of a long time samters sufferer. was requiring> increasing frequent surgeries with increasing numbers of problem> during surgery. I check this site regularly for any information I> can on new things to try. In the UK the general answer from Medics> is antihistamines, steroids, and repeated surgery. was> prescribed Singular after we heard about it here and asked for it,> the ENT consultant was not impressed by the leukotrine pathway and> relevant references had armed himself with - but prescribed it> anyway. >> has desperate to try anything to prevent polyp regrowth after> his last surgery, he was considering self desense but I managed to> talk him out of that as his only encounter with aspirin still the> onset of his asthma resulting in much time in A+E. He was also> considering travelling to Scripts to get it done if we could find> anyone in the UK. He paid to see an allergist privately who said he> wouldn't do aspirin desensitization because "if he did and it worked> everyone would want it doing"!!!!!!!!!!>> >> Finally we managed to get to see someone in> pharmacology/toxicology and they agreed to do it, here in Cardiff> without having to travel miles. They used the Scripts protocol> (roughly) and after day2 left having taken 600mg without a> reaction and has continued on 600mg ever since. That has been about> 8 months now. Last ENT check showed no polyp growth yet.>> Of course you can't tell whether its just coincidence but he does> seem generally healthier and happier than pre desense.>> >> The moral of my e-mail is don't give up. Every samters sufferer> responds in a different way to each therapy. This site allows us to> see what other people try and decide if that would be worth trying> for ourselves. >> would not have discovered irrigation had it not been for this> site - and that is something I suspect all sufferers benefit from (I> have to say I can not be within hearing distance when he does it but> I can tell if he has missed a morning- it makes a huge difference.> Thanks Ken for all the irrigation posts when we first found the site).>> >> Desense is not for everyone but it does answer some of the problems> for some. This includes removing the need to stick to a low> salicylate diet. Good luck, don't give up the search for a doctor> that understands, there are some out there!>> >> Mandy>> > > > > ------------------------------------> >

[Guest guest]

Hi Kim,

I have a theory that works for me but may not be for everybody. I spent decades in a dusty, toxic environment though my work as a home remodeling contractor. I didn’t believe in drugs. I believed in my strength. I toughed it out too many times. I reached my limit and everything was too much. I have spent the last 10 years cleaning and eliminating all known toxins. I believe that is the cure. I can now take some surprises like MSG in a chip or a room full of saw dust because I am now well below my limit.

Let me know if my ideas need more clarification,

Pam

On 12/21/08 11:00 AM, " Kim Buzas " <kbuzas@...> wrote:

hi pam .. you say in your first paragraph that you have been cured .. was it the combo of drugs etc that worked .. i am a little confused .. please elaborate .. i am a thirty yr sufferer .. was told i have samters .. i have reoccurring nasal polyps, 4 surgeries in 7 yrs .. allergies .. had 12yrs of allergy shots .. asthma .. but i do not have allergy to aspirin .. i am currently taking 1300mg aspirin daily .. for about a month now .. i use nasonex and allegra d .. also advair 250/50 every other nite .. i would love my sense of smell back .. even a faint bit .. its been gone for 16yrs .. most of all i would like to keep my polyps from reoccuring so fast .. any advice from you or anyone else reading would be greatly appreciated

Re: Re: salicylate sensitivity

Hello and all,

I don't post very often but have been reading for 6 years. I have been

cured. My symptoms were diagnosed 10 years ago. I had always had

allergies. My sense of smell was so long gone, I didn't even miss it

anymore. I had three surgeries in 5 years. I was hospitalized once for

uncontrollable asthma.

I didn't respond to Advair or Singulair. I did to prednisone, theophylin,

Zyflo, albuterol, caffeine, vitamin C.

I spent my second pregnancy on monthly prednisone bursts along with the

doctor's beratement for being that bad off.

My husband was an EMT so I had access to a pulse-ox and oxygen. I struggled

to get my pulse below my O2 saturation. I slept with oxygen every night.

The time I went into the hospital, I was taking nebulizer with oxygen and

double strength albuterol and still my O2 was down to 68.

I had to quit work as a home builder. I couldn’t walk down the cleaning

isle in the grocery store. I would react to MSG, sulfites, and Yellow #5.

I have gone through everything. Acupuncture, therapy, diets, some weird

stuff too. I have cleaned my house and diet. I have no carpet and a whole

house HEPA filter. I avoid toxins but have not reacted to some surprises.

Yeah!

I take aspirin, nasonex, astilin (as needed), albuterol (one canister will

last me a year) and aciphex. I have learned to anticipate and medicate my

problems early, on the first sign.

I have a sense of smell and my 6 year old son can't remember that I was ever

sick although he does know that we will never own a pet because of my

allergies. My last surgery was in 2002. I can visit the dangerous triggers

but I don't hang out. I haven't had an asthma attack in years. I do still

sneeze in the morning sometimes and irrigate with my Grossan.

Questions are welcome if I wasn't clear. My spell check is unhappy, so

forgive.

Pam

On 12/11/08 1:21 PM, " Belbin " <stoneywood21@... <mailto:stoneywood21%40aol.com> > wrote:

> Hello Mandy

> I do not want to come across as someone who opposes desensitization,

> but in the seven years that I have been watching this forum, I have

> sensed that, while most profess improved wellbeing, few actually come

> forward and state that there has been a cure.

> OK, so you one can now withstand accidental ingestion of aspirin, but

> can you eat what you want and live a truly improved lifestyle.

> Also, I am not attracted to the fact that if the dose is lapsed, you

> have to start again,.

> Ken has pointed out that I could have, like your husband, found

> someone to carry out this procedure, but for the above reasons I

> would not seek private treatment.

>

> Now, back to the point of my post. Did get much benefit from

> the Singulair?

> After a decade of rampant growth, I attribute the current remission

> of my poyps to starting on this drug. Perhaps another fortuitous

> coincidence?

> Regards

>

>

>>

>> Hi Maggie,

>>

>> I am the wife of a long time samters sufferer. was requiring

> increasing frequent surgeries with increasing numbers of problem

> during surgery. I check this site regularly for any information I

> can on new things to try. In the UK the general answer from Medics

> is antihistamines, steroids, and repeated surgery. was

> prescribed Singular after we heard about it here and asked for it,

> the ENT consultant was not impressed by the leukotrine pathway and

> relevant references had armed himself with - but prescribed it

> anyway.

>> has desperate to try anything to prevent polyp regrowth after

> his last surgery, he was considering self desense but I managed to

> talk him out of that as his only encounter with aspirin still the

> onset of his asthma resulting in much time in A+E. He was also

> considering travelling to Scripts to get it done if we could find

> anyone in the UK. He paid to see an allergist privately who said he

> wouldn't do aspirin desensitization because " if he did and it worked

> everyone would want it doing " !!!!!!!!!!

>>

>> Finally we managed to get to see someone in

> pharmacology/toxicology and they agreed to do it, here in Cardiff

> without having to travel miles. They used the Scripts protocol

> (roughly) and after day2 left having taken 600mg without a

> reaction and has continued on 600mg ever since. That has been about

> 8 months now. Last ENT check showed no polyp growth yet.

>> Of course you can't tell whether its just coincidence but he does

> seem generally healthier and happier than pre desense.

>>

>> The moral of my e-mail is don't give up. Every samters sufferer

> responds in a different way to each therapy. This site allows us to

> see what other people try and decide if that would be worth trying

> for ourselves.

>> would not have discovered irrigation had it not been for this

> site - and that is something I suspect all sufferers benefit from (I

> have to say I can not be within hearing distance when he does it but

> I can tell if he has missed a morning- it makes a huge difference.

> Thanks Ken for all the irrigation posts when we first found the site).

>>

>> Desense is not for everyone but it does answer some of the problems

> for some. This includes removing the need to stick to a low

> salicylate diet. Good luck, don't give up the search for a doctor

> that understands, there are some out there!

>>

>> Mandy

>>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Pam,

When you say you eliminated all toxins, can you elaborate? I'm going

to start the salicylate elimination diet after the holidays, and I'm

hopeful that it will help my symptoms. It seems like people in the

group have had mixed results with this, but detoxifying has worked for

you. I'd love to have a consistent sense of smell, and I'm getting

wary of prednisone.

Happy holidays!

Becca

[Guest guest]

I tried the fail safe diet with not much effect. I do react to sulfites,

artificial colors, and MSG. My diet is mostly whole foods now. I have

allergies and have done much better with no carpeting and non-toxic building

materials.

I also had to quit my job. The saw dust, drywall dust, chemicals,

formaldehyde, paint, and people's life dust in the older homes.

I avoid all fragrances in cleaning products and personal care products.

My recovery was gradual over 5 years. I am also motivated to protect my

children from Samters. That helps with the whole foods, but they really

want a dog.

Good luck to you,

Pam

On 12/23/08 8:34 AM, " rebeebit " <rebeebit@...> wrote:

> Pam,

> When you say you eliminated all toxins, can you elaborate? I'm going

> to start the salicylate elimination diet after the holidays, and I'm

> hopeful that it will help my symptoms. It seems like people in the

> group have had mixed results with this, but detoxifying has worked for

> you. I'd love to have a consistent sense of smell, and I'm getting

> wary of prednisone.

>

> Happy holidays!

> Becca

>

>

> ------------------------------------

>

>

[Guest guest]

an easy to read artice, which does link and reference to the Fibromyalgia site with information, because some FMS treatments go Salicylate free.

Salicylate Sensitivity and Intolerance

Salicylates are everywhere. They are hormones naturally produced by plants that protect them when they grow, and they are found in fruits, vegetables, beverages, nuts, herbs, and so forth. Salicylates can also be manufactured, and aspirin is an example, as is artificial food coloring, benzoates, and pain relievers. Salicylates can also be found in skin care products, fragrances, mouthwashes, toothpastes, shampoos, and conditioners. Salicylates are also used as preservatives to prevent bacteria or fungi and to help improve taste.Because salicylates are so prevalent and found in fresh foods, processed foods, and manufactured products, more and more people are developing sensitivities or intolerances to them. Additionally, the amount of salicylates in products, plants, and herbs can vary widely. Some foods have low levels of salicylates, such as cauliflower or pears, and other foods have high levels of salicylates, such as mint and mushrooms. Moreover, raw foods and the peels of plants contain higher levels of salicylates than plants which are cooked or peeled.

more at:http://www.newrinkles.com/index.php/pain-aids/salicylate-sensitivity-and-intolerance

[Guest guest]

Thanks for this information, Clare. I need all the help I can get.

Pam

Salicylate Sensitivity

an easy to read artice, which does link and reference to the Fibromyalgia site with information, because some FMS treatments go Salicylate free.

Salicylate Sensitivity and Intolerance

Salicylates are everywhere. They are hormones naturally produced by plants that protect them when they grow, and they are found in fruits, vegetables, beverages, nuts, herbs, and so forth. Salicylates can also be manufactured, and aspirin is an example, as is artificial food coloring, benzoates, and pain relievers. Salicylates can also be found in skin care products, fragrances, mouthwashes, toothpastes, shampoos, and conditioners. Salicylates are also used as preservatives to prevent bacteria or fungi and to help improve taste.Because salicylates are so prevalent and found in fresh foods, processed foods, and manufactured products, more and more people are developing sensitivities or intolerances to them. Additionally, the amount of salicylates in products, plants, and herbs can vary widely. Some foods have low levels of salicylates, such as cauliflower or pears, and other foods have high levels of salicylates, such as mint and mushrooms. Moreover, raw foods and the peels of plants contain higher levels of salicylates than plants which are cooked or peeled.

more at:http://www.newrinkles.com/index.php/pain-aids/salicylate-sensitivity-and-intolerance

[Guest guest]

Hi Pam et al:

For what its worth let me tell you what is happening for myself with regards to

Salicylates and other natural chemicals.

Firstly my dietitian is coming to the conclusion that I may be suffering from

multiple chemical sensitivity. MCS

So far, confirmed a LATEX intol, Gluten Intol, Casein Intol: now we are working

through the next batch of chemicals and after the last couple of days

Salicylates are definitely intolerant for me. Amines are the next to be

challeged - wish me luck as I actually get to eat / trial bananas and dark

bitter sweet chocolate, tinned salmon too!

What has this meant for me?

The two weeks I was on the 100% free salicylate 100% free Amine and 100% free

glutamate diet - I was totally pain free, gut problem free, itch and rash free.

(This is not a diet for weaklings!) Then came the challenges.... I was allowed a

cup of black tea, a cup of diced carrots, a zuchinni and a cup of sweet potato

and 6 mints (candy).... and WHAMMO the rash the itches, explosive diarrhea, the

pain, chest pains and palpitations all came back............ OFF the salicylates

again and slowly they all went away.

So to be certain I was not simply reacting to the caffeine in the tea...... I

have had to re-do the Sal challenges these past few days without drinking any

tea.

The problems all came back, with a few extra ones...... I FEEL that the

dietitian will confirm I have Salicylate Sensitivity - Intolerance.

AM I GOING TO BE CURED?

I honestly do not know, but this is perhaps a positive step in the right

direction. It is going to reduce my food choices substantially, but that my Dear

Friends will be worth it, to regain some portion of my dignity and life.

As I learn more about my body and its action/reaction to these naturally

occuring chemicals, I will write and let you know. All I can say right now is

that the diet is very limiting and frustrating, but it sure was nice having two

weeks (almost) free of pain, and I had ENERGY!

Thanks for listening

Clare in Tasmania