Re: low impact solution (but not so easy if you want to enjoy life)

January 2, 2007

I was wondering about the allergy shots. I am currently taking them weekly. I'm at my fifth dose and haven't noticed a possitive reaction. How long does it take to reduce the inflamation? I'm not up to full doses yet. First few weeks I felt like I had the flu. Could you share your experience?

Thank you,

Tami

low impact solution (but not so easy if you want to enjoy life)

I thought I should share my own experience since I've been in the 'nothing works' category for so long. I've finally(knock on wood) got a handle on the syndrome, I think.The basic issue is that samters is an inflammatory syndrome and people with it react worse to foods and substances than most people. Our general level of inflammation is very high. So the idea is to lower inflammation across the board in our bodies. This can definitely be done. My experience in brief: Samters with mild asthma but truly horrendous nasal polyps. Had major surgery 6 years ago, really disrupted my life. Have had 4 office surgeries since(excellent doc- said a few years ago it wasn't available and would be a hospital visit). They've been much more low impact than going under full anesthesia but still are not a solution. I've done prednisone blasts which helped only temporarily and really wiped out my health otherwise. I've also done ongoing steroid nasal sprays of varying types- bad side effects for me even though they're not supposed to (insomnia, weight gain around the middle, lowered immune system- sick all the time). The sprays work to keep the polyps at bay but wreck my life otherwise. I do take singulair which helps in a minor way but at least I can tolerate it. I also am aspirin sensitive. Tried desensitization but reacted badly. Doctor had never seen a case like that (delayed reaction, 10 hours later on 1/4 baby aspirin, got worse and didn't go away as I built up). I felt poisoned and had to stop. Thought that was my last shot for a normal life. But....As samters is basically an inflammatory disease the idea is to lower general inflammation in your body. Here are a few specific ways I did this:Salycilates- in foods (same stuff as in aspirin)- it's everywhere in plants. A lot of very healthy foods (olive oil, avocados, fruits, tea, etc) are very high and this can cause an ongoing inflammatory reaction. I cut down drastically on these foods, though still cheat a little. This is a critical issue because a lot of times when you think you're eating really healthy you're actually loading up on sals and that makes you worse. Hence, for me, the fact I never got better even when I was being so 'healthy.' Even supplements made of vegetables can have high sals, so it's tough to avoid.Sugar- cut out completely. In me it causes inflammation because I don't handle it well. I've also been losing weight around my middle steadily just since doing this.Preservatives and fried foods- inflammation again in someone with samters. I cut it them out as completely as possible though chemicals are hard to avoid, especially when eating out.Allergy shots- for dust mites mostly, along with a lot of other stuff. Again, if they work they'll lower your inflammation across the board.Accupuncture- very intensively and it's VERY hard to find a good one but I finally did and I've noticed a definite change for the better since. All these things combined have made it so my nasal polyps do not grow any more. They haven't yet shrunk back so I might do another office op and then use the diet above to maintain. It's somewhat restrictive but then so is being utterly miserable every day, so for me it's a fair bargain. I have a cheat day so I don't forget what it's like to be normal... I hope this info helps some of you whom nothing else has worked without bad side effects. It took me 15 years to come upon this as it was...

January 2, 2007

I did allergy shots for a

year. I was never able to get to the full strength on one of my shots

because I always had inflammation at the injection site. The other shot

would sometimes give me problems and sometimes not (I am allergic to so many

thing I got 2 shots, 1 in each arm). I also noticed I was more stuffed up

after getting my shots and it was the worst spring I have ever had. So I finally

stopped them and my level of stuffiness is actually much better. My

allergist had no idea why they made me worse but he agreed that was what was

happening.

K.

Re: low impact

solution (but not so easy if you want to enjoy life)

I was wondering about the allergy

shots. I am currently taking them weekly. I'm at my fifth dose

and haven't noticed a possitive reaction. How long does it take to

reduce the inflamation? I'm not up to full doses yet. First few

weeks I felt like I had the flu. Could you share your experience?

Thank you,

Tami

low impact solution (but not so easy if you want to enjoy life)

I thought I should share

my own experience since I've been in

the 'nothing works' category for so long. I've finally(knock on wood)

got a handle on the syndrome, I think.

The basic issue is that samters is an inflammatory syndrome and

people with it react worse to foods and substances than most people.

Our general level of inflammation is very high. So the idea is to

lower inflammation across the board in our bodies. This can

definitely be done.

My experience in brief: Samters with mild asthma but truly horrendous

nasal polyps. Had major surgery 6 years ago, really disrupted my

life. Have had 4 office surgeries since(excellent doc- said a few

years ago it wasn't available and would be a hospital visit). They've

been much more low impact than going under full anesthesia but still

are not a solution. I've done prednisone blasts which helped only

temporarily and really wiped out my health otherwise. I've also done

ongoing steroid nasal sprays of varying types- bad side effects for

me even though they're not supposed to (insomnia, weight gain around

the middle, lowered immune system- sick all the time). The sprays

work to keep the polyps at bay but wreck my life otherwise. I do take

singulair which helps in a minor way but at least I can tolerate it.

I also am aspirin sensitive. Tried desensitization but reacted badly.

Doctor had never seen a case like that (delayed reaction, 10 hours

later on 1/4 baby aspirin, got worse and didn't go away as I built

up). I felt poisoned and had to stop. Thought that was my last shot

for a normal life. But....

As samters is basically an inflammatory disease the idea is to lower

general inflammation in your body. Here are a few specific ways I did

this:

Salycilates- in foods (same stuff as in aspirin)- it's everywhere in

plants. A lot of very healthy foods (olive oil, avocados, fruits,

tea, etc) are very high and this can cause an ongoing inflammatory

reaction. I cut down drastically on these foods, though still cheat a

little. This is a critical issue because a lot of times when you

think you're eating really healthy you're actually loading up on sals

and that makes you worse. Hence, for me, the fact I never got better

even when I was being so 'healthy.' Even supplements made of

vegetables can have high sals, so it's tough to avoid.

Sugar- cut out completely. In me it causes inflammation because I

don't handle it well. I've also been losing weight around my middle

steadily just since doing this.

Preservatives and fried foods- inflammation again in someone with

samters. I cut it them out as completely as possible though chemicals

are hard to avoid, especially when eating out.

Allergy shots- for dust mites mostly, along with a lot of other

stuff. Again, if they work they'll lower your inflammation across the

board.

Accupuncture- very intensively and it's VERY hard to find a good one

but I finally did and I've noticed a definite change for the better

since.

All these things combined have made it so my nasal polyps do not grow

any more. They haven't yet shrunk back so I might do another office

op and then use the diet above to maintain. It's somewhat restrictive

but then so is being utterly miserable every day, so for me it's a

fair bargain. I have a cheat day so I don't forget what it's like to

be normal... I hope this info helps some of you whom nothing else has

worked without bad side effects. It took me 15 years to come upon

this as it was...

January 3, 2007

Hi K.

I would like to ask a question for those who have had allergy testing since developing Samters.

Were your number of positive reactions extremely high?

I was tested 3 weeks ago. I tested positive for all allergens except two. I tested off scale for six items. In other words the highest dillution was still highly reactive. Is this normal for Samters patients? Are we ultra reactive to all allergens or is this just my reaction. BTW the 2 I didn't react to were molds and yeast. I reacted off scale to trees, grasses, Ragweed, Bahia grass, Fescue and White Pine.

Shots are coming along relatively well I am also getting 2 shots one in each arm.

I had surgery (Image Guided) in Nov. I am ASA desensitized and getting allergy shots. I do nasal rinses everyday (NeilMed bottle) and use Flonase and Advair 250/50. I have my sense of smell and taste back for first time in 2 years. Things are looking up for 2007.

Thanks for listening and please answer back with allergy testing responses.

Happy New Year

Marcus

January 3, 2007

-Hi Tami,

I'd give the allergy shots a little time. It took me a few months

to really start to feel things get better and then till I was on the

full 'maintenance dose' before the allergies really quieted down

(about 6 months). It didn't solve the problem completely but helped a

lot. I can't stress enough how important the diet issues are, though,

and it'll only help if you go all the way with it. I've found that

there are many causes working together to throw the health out of

balance and they all need to be equally addressed if you're going to

avoid harmful long term medicated solutions. But that's my approach,

others might differ.

>

> I was wondering about the allergy shots. I am currently taking

them weekly. I'm at my fifth dose and haven't noticed a possitive

reaction. How long does it take to reduce the inflamation? I'm not

up to full doses yet. First few weeks I felt like I had the flu.

Could you share your experience?

> Thank you,

> Tami

>

> low impact solution (but not so easy if you

want to enjoy life)

>

> I thought I should share my own experience since I've been in

> the 'nothing works' category for so long. I've finally(knock on

wood)

> got a handle on the syndrome, I think.

>

> The basic issue is that samters is an inflammatory syndrome and

> people with it react worse to foods and substances than most

people.

> Our general level of inflammation is very high. So the idea is to

> lower inflammation across the board in our bodies. This can

> definitely be done.

>

> My experience in brief: Samters with mild asthma but truly

horrendous

> nasal polyps. Had major surgery 6 years ago, really disrupted my

> life. Have had 4 office surgeries since(excellent doc- said a few

> years ago it wasn't available and would be a hospital visit).

They've

> been much more low impact than going under full anesthesia but

still

> are not a solution. I've done prednisone blasts which helped only

> temporarily and really wiped out my health otherwise. I've also

done

> ongoing steroid nasal sprays of varying types- bad side effects

for

> me even though they're not supposed to (insomnia, weight gain

around

> the middle, lowered immune system- sick all the time). The sprays

> work to keep the polyps at bay but wreck my life otherwise. I do

take

> singulair which helps in a minor way but at least I can tolerate

it.

>

> I also am aspirin sensitive. Tried desensitization but reacted

badly.

> Doctor had never seen a case like that (delayed reaction, 10

hours

> later on 1/4 baby aspirin, got worse and didn't go away as I

built

> up). I felt poisoned and had to stop. Thought that was my last

shot

> for a normal life. But....

>

> As samters is basically an inflammatory disease the idea is to

lower

> general inflammation in your body. Here are a few specific ways I

did

> this:

>

> Salycilates- in foods (same stuff as in aspirin)- it's everywhere

in

> plants. A lot of very healthy foods (olive oil, avocados, fruits,

> tea, etc) are very high and this can cause an ongoing

inflammatory

> reaction. I cut down drastically on these foods, though still

cheat a

> little. This is a critical issue because a lot of times when you

> think you're eating really healthy you're actually loading up on

sals

> and that makes you worse. Hence, for me, the fact I never got

better

> even when I was being so 'healthy.' Even supplements made of

> vegetables can have high sals, so it's tough to avoid.

>

> Sugar- cut out completely. In me it causes inflammation because I

> don't handle it well. I've also been losing weight around my

middle

> steadily just since doing this.

>

> Preservatives and fried foods- inflammation again in someone with

> samters. I cut it them out as completely as possible though

chemicals

> are hard to avoid, especially when eating out.

>

> Allergy shots- for dust mites mostly, along with a lot of other

> stuff. Again, if they work they'll lower your inflammation across

the

> board.

>

> Accupuncture- very intensively and it's VERY hard to find a good

one

> but I finally did and I've noticed a definite change for the

better

> since.

>

> All these things combined have made it so my nasal polyps do not

grow

> any more. They haven't yet shrunk back so I might do another

office

> op and then use the diet above to maintain. It's somewhat

restrictive

> but then so is being utterly miserable every day, so for me it's

a

> fair bargain. I have a cheat day so I don't forget what it's like

to

> be normal... I hope this info helps some of you whom nothing else

has

> worked without bad side effects. It took me 15 years to come upon

> this as it was...

>

January 3, 2007

When I do the allergy shot I get inflammation also, and my injection site always gets very hot. Did yours?

Tami

low impact solution (but not so easy if you want to enjoy life)

I thought I should share my own experience since I've been in the 'nothing works' category for so long. I've finally(knock on wood) got a handle on the syndrome, I think.The basic issue is that samters is an inflammatory syndrome and people with it react worse to foods and substances than most people. Our general level of inflammation is very high. So the idea is to lower inflammation across the board in our bodies. This can definitely be done. My experience in brief: Samters with mild asthma but truly horrendous nasal polyps. Had major surgery 6 years ago, really disrupted my life. Have had 4 office surgeries since(excellent doc- said a few years ago it wasn't available and would be a hospital visit). They've been much more low impact than going under full anesthesia but still are not a solution. I've done prednisone blasts which helped only temporarily and really wiped out my health otherwise. I've also done ongoing steroid nasal sprays of varying types- bad side effects for me even though they're not supposed to (insomnia, weight gain around the middle, lowered immune system- sick all the time). The sprays work to keep the polyps at bay but wreck my life otherwise. I do take singulair which helps in a minor way but at least I can tolerate it. I also am aspirin sensitive. Tried desensitization but reacted badly. Doctor had never seen a case like that (delayed reaction, 10 hours later on 1/4 baby aspirin, got worse and didn't go away as I built up). I felt poisoned and had to stop. Thought that was my last shot for a normal life. But....As samters is basically an inflammatory disease the idea is to lower general inflammation in your body. Here are a few specific ways I did this:Salycilates- in foods (same stuff as in aspirin)- it's everywhere in plants. A lot of very healthy foods (olive oil, avocados, fruits, tea, etc) are very high and this can cause an ongoing inflammatory reaction. I cut down drastically on these foods, though still cheat a little. This is a critical issue because a lot of times when you think you're eating really healthy you're actually loading up on sals and that makes you worse. Hence, for me, the fact I never got better even when I was being so 'healthy.' Even supplements made of vegetables can have high sals, so it's tough to avoid.Sugar- cut out completely. In me it causes inflammation because I don't handle it well. I've also been losing weight around my middle steadily just since doing this.Preservatives and fried foods- inflammation again in someone with samters. I cut it them out as completely as possible though chemicals are hard to avoid, especially when eating out.Allergy shots- for dust mites mostly, along with a lot of other stuff. Again, if they work they'll lower your inflammation across the board.Accupuncture- very intensively and it's VERY hard to find a good one but I finally did and I've noticed a definite change for the better since. All these things combined have made it so my nasal polyps do not grow any more. They haven't yet shrunk back so I might do another office op and then use the diet above to maintain. It's somewhat restrictive but then so is being utterly miserable every day, so for me it's a fair bargain. I have a cheat day so I don't forget what it's like to be normal... I hope this info helps some of you whom nothing else has worked without bad side effects. It took me 15 years to come upon this as it was...

January 3, 2007

marcus and all,

A few years ago we touched on the subject of allergies and most people with samters said they did not test positive to allergens. I recently tested positive for dust mites, 3 types of mold and box elder tree's. Dust mites and box elder being the worst. When I was young (pre samters) I don't believe I had these allergies, or at least they didn't affect me. Maybe we should poll this one again and see how things have changed.

Tami

Re: low impact solution (but not so easy if you want to enjoy life)

Hi K.I would like to ask a question for those who have had allergy testing since developing Samters.Were your number of positive reactions extremely high? I was tested 3 weeks ago. I tested positive for all allergens except two. I tested off scale for six items. In other words the highest dillution was still highly reactive. Is this normal for Samters patients? Are we ultra reactive to all allergens or is this just my reaction. BTW the 2 I didn't react to were molds and yeast. I reacted off scale to trees, grasses, Ragweed, Bahia grass, Fescue and White Pine.Shots are coming along relatively well I am also getting 2 shots one in each arm.I had surgery (Image Guided) in Nov. I am ASA desensitized and getting allergy shots. I do nasal rinses everyday (NeilMed bottle) and use Flonase and Advair 250/50. I have my sense of smell and taste back for first time in 2 years. Things are looking up for 2007. Thanks for listening and please answer back with allergy testing responses.Happy New YearMarcus

January 3, 2007

Hi,

To my surprise I tested positive for none of around 20 common allergens, but I am allegic/intolerant to (crucially) salicylates which are extrememly common, in many foods and cosmetic products.

Chris.

-----Original Message-----From: samters [mailto:samters ]On Behalf Of uarisk1@...Sent: 03 January 2007 14:58samters Subject: Re: low impact solution (but not so easy if you want to enjoy life)

Hi K.I would like to ask a question for those who have had allergy testing since developing Samters.Were your number of positive reactions extremely high? I was tested 3 weeks ago. I tested positive for all allergens except two. I tested off scale for six items. In other words the highest dillution was still highly reactive. Is this normal for Samters patients? Are we ultra reactive to all allergens or is this just my reaction. BTW the 2 I didn't react to were molds and yeast. I reacted off scale to trees, grasses, Ragweed, Bahia grass, Fescue and White Pine.Shots are coming along relatively well I am also getting 2 shots one in each arm.I had surgery (Image Guided) in Nov. I am ASA desensitized and getting allergy shots. I do nasal rinses everyday (NeilMed bottle) and use Flonase and Advair 250/50. I have my sense of smell and taste back for first time in 2 years. Things are looking up for 2007. Thanks for listening and please answer back with allergy testing responses.Happy New YearMarcus

January 3, 2007

I

was tested for allergies before I developed Samters, so I am not sure how my

case relates… I tested highly positive for most grasses and a good

number of trees. I am also allergic to my cat and my horse though those

were mild reactions. I think there may have been a few other things in

there but my worst reaction was the grasses, esp. timothy (a main grass used in

hay). I actually think I inherited the allergies and the polyps (my dad

has both but lacks the asthma and the aspirin allergy). My allergies

though have gotten worse as I got older and I developed allergy-induced asthma

then the polyps and aspirin allergy and it sort of went downhill from

there. But right now I am holding pretty stable, mostly clear, mostly can

smell, I irrigate twice a day with 1000mL saline in a water pik, I use Flonase

twice a day, Allegra, Singulair and Asmanex and that seems to keep everything

under control.

K.

Re: low impact

solution (but not so easy if you want to enjoy life)

Hi K.

I would like to ask a question for those who have had allergy testing since

developing Samters.

Were your number of positive reactions extremely high?

I was tested 3 weeks ago. I tested positive for all allergens except two. I

tested off scale for six items. In other words the highest dillution was still

highly reactive. Is this normal for Samters patients? Are we ultra reactive to

all allergens or is this just my reaction. BTW the 2 I didn't react to were

molds and yeast. I reacted off scale to trees, grasses, Ragweed, Bahia

grass, Fescue and White Pine.

Shots are coming along relatively well I am also getting 2 shots one in each

arm.

I had surgery (Image Guided) in Nov. I am ASA desensitized and getting allergy

shots. I do nasal rinses everyday (NeilMed bottle) and use Flonase and Advair

250/50. I have my sense of smell and taste back for first time in 2 years.

Things are looking up for 2007.

Thanks for listening and please answer back with allergy testing responses.

Happy New Year

Marcus

January 3, 2007

I don’t remember it

getting hot, just red, raised and itchy. And then the next day my nose would

be totally stuffed up. It was the stuffiness that made me quite. I was

getting shots every other week and had some unrelated health issues so I skipped

my shot and realized that I could breath better than I had been able to in awhile

and it got better so after not getting a shot for a month I went to my

allergist and told him I wasn’t getting anymore. I’ve been much

better since.

K.

Re: low impact

solution (but not so easy if you want to enjoy life)

When I do the allergy shot I get

inflammation also, and my injection site always gets very hot. Did yours?

Tami

low impact solution (but not so easy if you want to enjoy life)

I thought I should share my own experience since I've

been in