desense in Texas

[Guest guest]

I don't know where you are in Texas, but you need to find Drs who know about desensitization. It is approved by most insurance, is no longer considered experimental, and is the only thing that has been shown to really work to help cure the disease. Yes, it might not work, but for many of us it does or has worked. A lot of people don't bother with this Samter's group because they've had success with desensitization and are no longer having problems. If it is done right there is very little risk -- what risk do your doctors see? Some people find they cannot tolerate long-term aspirin use, but it is certainly worth a try. It makes a huge difference in the quality of life for many Samter's sufferers. If I were you I'd keep looking until I found a doctor who knows more about the disease. We're lucky in Colorado -- there are quite a few MDs who have a lot of experience with Samter's. Good luck to you. On Jan 31, 2011, at 3:13 AM, aio_cps@... wrote:

Thanks for this information jackBy the way I'm in Texas tooDo you see a dr that is helping you at all?that recognizes this but also offers some suggestions 2 Drs. I have seen both said aspirin desensitizationToo risky , might not work, I am a little discouraged to think this might be my life-- struggling with Samters not living with itSent from iPhoneOn Jan 30, 2011, at 12:49 PM, "stuffyintexas" <stuffyintexas@...> wrote:

I've been doing some more research, and keeping close track of what I've been eating to figure out what is causing my asthma and sinus reactions. One of the physician's assistants at my allergy doctor's office said the best way to see if you are allergic to a certain food is to eat a lot of it.

I was suspecting there was something in cheese that was causing some of my reactions, so I ate a bunch of cheese, and sure enough, later that day (and for the next couple of days), I was having to take some breathing treatments. At the same time, my blood pressure went way up.

A good place to start reading up on amines is http://en.wikipedia.org/wiki/Foods_containing_tyramine.

There may be some connection to salicylate sensitivities too. Still researching that.

For now, I've cut out all cheese products, as well as avocados (which I thought would be good for me), and chocolates. Will let everyone know if that has helped.

Was wondering if anyone on this group has tried low amine diets, or verified any reaction to amines?

Jack

[Guest guest]

I totally agreedesensitization has made the difference between being able to manage this disease vs. having bouts of depression that I seriously wondered how I could live the rest of my life this way......It has in no way cured my disease - but the constant aggravation, reaction, sneezing, itchy feeling that kept my nose inflamed, constantly congested and ultimately sleep deprived for years has subsided greatly. My samters condition got at least 75%-80% better with the use of daily aspirin. I second the finding an allergist that will do this for you. Bianca

I've been doing some more research, and keeping close track of what I've been eating to figure out what is causing my asthma and sinus reactions. One of the physician's assistants at my allergy doctor's office said the best way to see if you are allergic to a certain food is to eat a lot of it.

I was suspecting there was something in cheese that was causing some of my reactions, so I ate a bunch of cheese, and sure enough, later that day (and for the next couple of days), I was having to take some breathing treatments. At the same time, my blood pressure went way up.

A good place to start reading up on amines is http://en.wikipedia.org/wiki/Foods_containing_tyramine.

There may be some connection to salicylate sensitivities too. Still researching that.

For now, I've cut out all cheese products, as well as avocados (which I thought would be good for me), and chocolates. Will let everyone know if that has helped.

Was wondering if anyone on this group has tried low amine diets, or verified any reaction to amines?

Jack

[Guest guest]

I would agree here with Bianca - desens has helped reduce the worst of my symptoms, but has by no means cured me, and I still take all the same meds, plus aspirin. It has helped improved the quality of my life significantly.

Becky

From: Bianca F <bianca_f75@...>samters Sent: Mon, 31 January, 2011 19:59:38Subject: Re: desense in Texas

I totally agreedesensitization has made the difference between being able to manage this disease vs. having bouts of depression that I seriously wondered how I could live the rest of my life this way......It has in no way cured my disease - but the constant aggravation, reaction, sneezing, itchy feeling that kept my nose inflamed, constantly congested and ultimately sleep deprived for years has subsided greatly. My samters condition got at least 75%-80% better with the use of daily aspirin. I second the finding an allergist that will do this for you. Bianca

I've been doing some more research, and keeping close track of what I've been eating to figure out what is causing my asthma and sinus reactions. One of the physician's assistants at my allergy doctor's office said the best way to see if you are allergic to a certain food is to eat a lot of it.I was suspecting there was something in cheese that was causing some of my reactions, so I ate a bunch of cheese, and sure enough, later that day (and for the next couple of days), I was having to take some breathing treatments. At the same time, my blood pressure went way up.A good place to start reading up on amines is http://en.wikipedia.org/wiki/Foods_containing_tyramine.There may be some connection to salicylate sensitivities too. Still

researching that.For now, I've cut out all cheese products, as well as avocados (which I thought would be good for me), and chocolates. Will let everyone know if that has helped.Was wondering if anyone on this group has tried low amine diets, or verified any reaction to amines?Jack

[Guest guest]

Not sure where you are in Texas, but if you're anywhere near Austin (or if

you're willing to travel - and it would ABSOLUTELY be worth it), I highly

recommend Dr Legere at http://www.austinallergist.com/. He's incredibly

knowledgeable about Samters and just oversaw my desense. I also highly

recommend the hospital where the desense took place. Their cookies were

phenomenal!

[Guest guest]

Thank you thank you!!!I am in Houston and will gladly pilgrimage to Austin!!Thank you so so muchHow was desensitization? I'd love to hear more when you have time to write- I'm still in hospital day 5 ThanksSent from my iPhoneOn Jan 31, 2011, at 3:47 PM, "N Ls" <novalanceseghi@...> wrote:

Not sure where you are in Texas, but if you're anywhere near Austin (or if you're willing to travel - and it would ABSOLUTELY be worth it), I highly recommend Dr Legere at http://www.austinallergist.com/. He's incredibly knowledgeable about Samters and just oversaw my desense. I also highly recommend the hospital where the desense took place. Their cookies were phenomenal!

[Guest guest]

Thank you for your message Bianca !That is helpfulSent from my iPhoneOn Jan 31, 2011, at 1:59 PM, Bianca F <bianca_f75@...> wrote:

I totally agreedesensitization has made the difference between being able to manage this disease vs. having bouts of depression that I seriously wondered how I could live the rest of my life this way......It has in no way cured my disease - but the constant aggravation, reaction, sneezing, itchy feeling that kept my nose inflamed, constantly congested and ultimately sleep deprived for years has subsided greatly. My samters condition got at least 75%-80% better with the use of daily aspirin. I second the finding an allergist that will do this for you. Bianca

I've been doing some more research, and keeping close track of what I've been eating to figure out what is causing my asthma and sinus reactions. One of the physician's assistants at my allergy doctor's office said the best way to see if you are allergic to a certain food is to eat a lot of it.

I was suspecting there was something in cheese that was causing some of my reactions, so I ate a bunch of cheese, and sure enough, later that day (and for the next couple of days), I was having to take some breathing treatments. At the same time, my blood pressure went way up.

A good place to start reading up on amines is http://en.wikipedia.org/wiki/Foods_containing_tyramine.

There may be some connection to salicylate sensitivities too. Still researching that.

For now, I've cut out all cheese products, as well as avocados (which I thought would be good for me), and chocolates. Will let everyone know if that has helped.

Was wondering if anyone on this group has tried low amine diets, or verified any reaction to amines?

Jack

[Guest guest]

The desensitization was a wonderful experience. Dr Legere and his staff were

wonderful. He always had time to give his full attention. Both he and the

hospital are in network for my Blue Cross PPO plan.

If you have to be stuck in the hospital for 2 days, Westlake is the place to be.

It is a small boutique private hospital. One to one nurse/patient ratio,

private rooms, 1:1 nurse to patient ratio, very edible food (I believe I

mentioned the incredible cookies?), etc. I couldn't believe they were in

network for my insurance!

More importantly, the care was fantastic. The nurses were excellent. Dr Legere

and his associates checked in multiple times throughout the desensitization that

went so flawlessly, I felt silly being in the hospital.

The most important of all: it's been 4 days and I can sleep through the night,

breathe through my nose, don't feel like my chest is constricted, not coughing,

no post nasal dripping, sneezing... I have actually been able to smell a couple

of things and my everything tastes so delicious! I actually feel like a real

person and have energy to do things other than just try to make it through the

day, which is very emotionally overwhelming after years of feeling so horrible.

I feel like a real person. My quality of life has increased a thousand-fold.

If you have any questions, feel free to email me. It was an incredible

experience and life changing to be able to feel like a human again.