RE: Re: asa desens and salicylate foods

[Guest guest]

Did he say if there was indication if the symptoms fade or increase over time? Also, any recommendation with herbs, vitamins to lower inflammation? Bianca On Oct 21, 2011, at 8:52 PM, "Darcie" <darciecoe@...> wrote:

I am back from Scripps in San Diego and have been desensitized. I still have asthma and now I am constantly smelling cigarette smoke through my nose. I am not around any smoke and would much rather have no sos than this. I have yet to get a cat scan to rule out the worst(tumor) but am hopeul it is not. I just wanted to share with you guys some of the answers I received from my doctor there. In response to any relation to salicylates in food and in aspirin, my doctor said there was none. I was very surprised by this and must admit, I am still a bit skeptical. I also posed the question of how far we are from finding a cure and also asked if there is any record of anyone beating this disease. The doc(who is rated in the top 1% of allergists in the country) stated that it is unknown when there will be a cure and that nobody has yet to beat this. People have beaten stage 4 malignancies but not this??? He said that asa desense is the single best treatment for AERD thus far but that all it does is slow down the inflammation and the polyp growth. I spent 2 days grilling him on questions so please feel free to ask me anything of concern to you and I will try my best to answer it while it is still fresh in my mind. All in all, the experience was a bit discouraging but I find comfort in knowing that we are all committed to helping eachother be well.

Thanks, Rob

>

> Also, I was curious if anyone took enzymes or anything for that matter that helps with the quick digestion of the aspirin and thus is able to enjoy a healthy stomach. I take 650 mg aspirin 3x a day right now (for one month, then back to only 2x a day) and I take ranitidine tabs 150mg 2x a day and so far, I have had no stomach problems.

> I have heard people say they can eat food w/sals once desens'd but I am still opting to eat low sals right now because I still have polyps on the left side and I am trying to get them to shrink.

> Thank you for bringing up this topic. Look forward to hearing folks input.

>

>

[Guest guest]

Thanks Rob,well at least your Dr was being honest. I'd be really grateful if you could jot down here other things that you remember too.My Dr also said there is no relation between aspirin and food salycilates, so really we SHOULD still be reacting to all foods high inn sals, but I do not. Being desens has enabled me to eat a full diet, and the only thing I still need to be careful with is wine. Being desens has greatly controlled my asthma - but not completely, and it has slowed my polyp growth, but I still need operations to remove them when they eventually grow.BeckyFrom: Darcie <darciecoe@...>samters Sent: Saturday, 22 October 2011, 5:52Subject: Re: asa desens and salicylate foods

I am back from Scripps in San Diego and have been desensitized. I still have asthma and now I am constantly smelling cigarette smoke through my nose. I am not around any smoke and would much rather have no sos than this. I have yet to get a cat scan to rule out the worst(tumor) but am hopeul it is not. I just wanted to share with you guys some of the answers I received from my doctor there. In response to any relation to salicylates in food and in aspirin, my doctor said there was none. I was very surprised by this and must admit, I am still a bit skeptical. I also posed the question of how far we are from finding a cure and also asked if there is any record of anyone beating this disease. The doc(who is rated in the top 1% of allergists in the country) stated that it is unknown when there will be a cure and that nobody has yet to beat this. People have beaten stage 4 malignancies but not this??? He said that asa desense is the

single best treatment for AERD thus far but that all it does is slow down the inflammation and the polyp growth. I spent 2 days grilling him on questions so please feel free to ask me anything of concern to you and I will try my best to answer it while it is still fresh in my mind. All in all, the experience was a bit discouraging but I find comfort in knowing that we are all committed to helping eachother be well.

Thanks, Rob

>

> Also, I was curious if anyone took enzymes or anything for that matter that helps with the quick digestion of the aspirin and thus is able to enjoy a healthy stomach. I take 650 mg aspirin 3x a day right now (for one month, then back to only 2x a day) and I take ranitidine tabs 150mg 2x a day and so far, I have had no stomach problems.

> I have heard people say they can eat food w/sals once desens'd but I am still opting to eat low sals right now because I still have polyps on the left side and I am trying to get them to shrink.

> Thank you for bringing up this topic. Look forward to hearing folks input.

>

>

[Guest guest]

Just a little input from myself.

Never been desens... still looking for a doctor to do that.

As to salicylates? Well I can drink red wine and eat most foods without a reaction and I have no idea why it started to behave in this manner. No polyps for five years, touch wood.

samters From: beckyb256@...Date: Sat, 22 Oct 2011 09:25:05 +0100Subject: Re: Re: asa desens and salicylate foods

Thanks Rob,

well at least your Dr was being honest. I'd be really grateful if you could jot down here other things that you remember too.

My Dr also said there is no relation between aspirin and food salycilates, so really we SHOULD still be reacting to all foods high inn sals, but I do not. Being desens has enabled me to eat a full diet, and the only thing I still need to be careful with is wine. Being desens has greatly controlled my asthma - but not completely, and it has slowed my polyp growth, but I still need operations to remove them when they eventually grow.

Becky

From: Darcie <darciecoe@...>samters Sent: Saturday, 22 October 2011, 5:52Subject: Re: asa desens and salicylate foods

I am back from Scripps in San Diego and have been desensitized. I still have asthma and now I am constantly smelling cigarette smoke through my nose. I am not around any smoke and would much rather have no sos than this. I have yet to get a cat scan to rule out the worst(tumor) but am hopeul it is not. I just wanted to share with you guys some of the answers I received from my doctor there. In response to any relation to salicylates in food and in aspirin, my doctor said there was none. I was very surprised by this and must admit, I am still a bit skeptical. I also posed the question of how far we are from finding a cure and also asked if there is any record of anyone beating this disease. The doc(who is rated in the top 1% of allergists in the country) stated that it is unknown when there will be a cure and that nobody has yet to beat this. People have beaten stage 4 malignancies but not this??? He said that asa desense is the single best treatment for AERD thus far but that all it does is slow down the inflammation and the polyp growth. I spent 2 days grilling him on questions so please feel free to ask me anything of concern to you and I will try my best to answer it while it is still fresh in my mind. All in all, the experience was a bit discouraging but I find comfort in knowing that we are all committed to helping eachother be well.Thanks, Rob >> Also, I was curious if anyone took enzymes or anything for that matter that helps with the quick digestion of the aspirin and thus is able to enjoy a healthy stomach. I take 650 mg aspirin 3x a day right now (for one month, then back to only 2x a day) and I take ranitidine tabs 150mg 2x a day and so far, I have had no stomach problems. > I have heard people say they can eat food w/sals once desens'd but I am still opting to eat low sals right now because I still have polyps on the left side and I am trying to get them to shrink.> Thank you for bringing up this topic. Look forward to hearing folks input.> >