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Oh how I wish we had an accurate answer to this question.

To be honest I don't think anyone really knows the answer. One

particular famous doctor overestimates, in my opinion, because he wants

more money for his research. But if you ask any one doctor how many

patients are in his practice and how many of them have Samters or

aspirin-sensitive asthma triad, whatever you want to call it, the

answer becomes a little clearer to me. For most of my doctors I am the

only patient they have ever seen with this disorder, or maybe they have

one other. Some doctors have never even heard of it. So to me the

prevalence is pretty low.

Lori

>

> Hi! Does anyone know what approximately could be the prevalence of

> Samters Triad? I went to see an ear specialist this week and he asked

> me " How many are you? " :) I could not answer that question and since

> I'm seeing him again tomorrow I thought it would be nice to be able to

> give him at least some kind of questimate then. Have a nice day!

>

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Actually, I found an article by a polish physician (Bochenek, G. et

al., (2002). Inflammation and Allergy, 1, 1-11.) claiming that

Samter's Triad affects 5-10 % of adult asthmatics. Sounds possible...?

" G. Bochenek, K. Bánska1, Z. Szabó2, E. Nizankowska, and A. Szczeklik*

Department of Medicine, Jagiellonian University School of Medicine,

Cracow, Poland Current Drug Targets - Inflammation & Allergy, 2002,

1, 1-11. Diagnosis, Prevention and Treatment of Aspirin-Induced Asthma

and Rhinitis

Abstract: Bronchial asthma is not a homogenous disease. Several

variants of asthma canbe distinguished. One of them is aspirin-induced

asthma. In this distinct clinical syndrome, aspirin and most other

nonsteroidal anti-inflammatory drugs that inhibit cyclooxygenase-1

precipitate rhinitis and asthma attacks. This type of asthma affects

5-10% of adult asthmatics, but remains largely underdiagnosed. The

natural history of aspirin-induced asthma (AIA) has been described,

based on an extensive pan-European survey. Aspirin provocation tests

with improved diagnostic accuracy have been developed, although no

in-vitro tests has been found to be of diagnostic value. Recent

interest in AIA has been stirred by the finding of alterations in

arachidonate metabolic pathways, leading to cysteinyl-leukotriene

overproduction. LTC4 synthase is overexpressed in bronchi and its

mRNA is upregulated in peripheral blood eosinophils. The gene coding

for LTC4 synthase exists in two common alleles, one of which appears

to be associated with a severe, steroid-dependent type of asthma. New

highly specific COX-2 inhibitors appear to be a safe alternative for

patients with aspirin-induced asthma. "

Regards,

>

> Hi! Does anyone know what approximately could be the prevalence of

> Samters Triad? I went to see an ear specialist this week and he asked

> me " How many are you? " :) I could not answer that question and since

> I'm seeing him again tomorrow I thought it would be nice to be able to

> give him at least some kind of questimate then. Have a nice day!

>

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Thinking about the prevalence of Samters leads me to a question for all of my Samters friends. I have been struggling with Samters for the last 20 years. However, I have not had asthma since I was 14 years old. I am now 49. I have had 13 polyp surgeries and although I've been through desensitization, I still struggle with chronic sinusitis. My father died at age 64 after 20 years of chronic asthma. I really think he probably also had Samters. Here's my question. How many of you out there only have the sinus component of Samters? I am miserable most of the time, however, I feel so fortunate not to have the lung issues that most of you suffer with and that my father suffered with.

Jane

From: anna.lastname <anna.lastname@...>Subject: The prevalence of Samterssamters Date: Wednesday, May 28, 2008, 11:51 PM

Hi! Does anyone know what approximately could be the prevalence ofSamters Triad? I went to see an ear specialist this week and he askedme "How many are you?" :) I could not answer that question and sinceI'm seeing him again tomorrow I thought it would be nice to be able togive him at least some kind of questimate then. Have a nice day!

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I have been dealing with this for 26 years now. The asthma doesn't kick in until the sinus situation goes "uncontrollable". Keeping the polyps and sinus infections in check is key for me. The aspirin connection wasn't made until I was given Torodol in trauma center and stopped breathing. Only then was the term Samters brought up. The onion rince actually works for me, if I catch a sinus infection trying to get a hold. Saline rinse twice daily, hot shower in morning and at night to open up sinuses. No smokers allowed. AC on recirc in car. Electrostatic air cleaner in bedroom. Who knows what actually helps or not. But like the rest, I grasp at any straw that makes an inkling of sense. Beyond frustration in Washington.... D.G.

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DG -

Washington state or DC? If DC who is your ENT?

Thanks,

Reg

From: Garoutte <dkgarout@...>Subject: Re: The prevalence of Samterssamters Date: Saturday, May 31, 2008, 2:08 AM

I have been dealing with this for 26 years now. The asthma doesn't kick in until the sinus situation goes "uncontrollable" . Keeping the polyps and sinus infections in check is key for me. The aspirin connection wasn't made until I was given Torodol in trauma center and stopped breathing. Only then was the term Samters brought up. The onion rince actually works for me, if I catch a sinus infection trying to get a hold. Saline rinse twice daily, hot shower in morning and at night to open up sinuses. No smokers allowed. AC on recirc in car. Electrostatic air cleaner in bedroom. Who knows what actually helps or not. But like the rest, I grasp at any straw that makes an inkling of sense.

Beyond frustration in Washington.. ..

D.G.

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Jane,

I'm 54 and have all 3 of the triad - none of my symptoms started until I moved from Kansas to Arizona when I was 43 then slowly they seeped into my life until they "run" my life now. Things that work for some dont work for others -- it is all trial and eror.

Reg

From: anna.lastname <anna.lastname>Subject: The prevalence of Samterssamters@groups .comDate: Wednesday, May 28, 2008, 11:51 PM

Hi! Does anyone know what approximately could be the prevalence ofSamters Triad? I went to see an ear specialist this week and he askedme "How many are you?" :) I could not answer that question and sinceI'm seeing him again tomorrow I thought it would be nice to be able togive him at least some kind of questimate then. Have a nice day!

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I only have two symptoms (no asthma).

>

> From: anna.lastname anna.lastname@...

> Subject: The prevalence of Samters

> samters

> Date: Wednesday, May 28, 2008, 11:51 PM

>

>

>

>

>

>

> Hi! Does anyone know what approximately could be the prevalence of

> Samters Triad? I went to see an ear specialist this week and he asked

> me " How many are you? " :) I could not answer that question and since

> I'm seeing him again tomorrow I thought it would be nice to be able to

> give him at least some kind of questimate then. Have a nice day!

>

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In 1961 at the age of 41 allergies and nasal polyps hit my father like a ton of bricks. He had multiple polyp surgeries and continued to have polyps until he passed away at the age of 83. He never experienced any asthma problems. However he did listen to all of the TV commercials that said that a person should take an aspirin a day for a healthy heart. This weakened his system and after 3 months he came down with bells palsy.

In 1990 at the age of 39 allergies and nasal polyps hit me like a ton of bricks. Within two years I was also experiencing multiple asthma attacks between June 1 and September 30. In 1993 I developed Aspiring Induced Asthma. I contacted the two leading allergists in my community and they told me that I wasn’t allergic to anything. In 1995 I meet an ENT instructor from the Mayo Clinic and he told me that Mayo refers their tough allergy cases to a specific allergist. This allergist told me that I was allergic to duct mites, pine trees and Mold. I found out that most conventional allergists do not have the ability to test a patient for Mold allergies. I started my desensitizing for mold in October 1995 and since then most of my asthma attacks have been medication related.

From 1991 to 1996 I had about twelve “excises for relief” procedures or what I like to call “white knuckle” polypectomies. My first hospital polyp surgery was in 1996 and within two weeks the polyps were growing back. In 2001 I had my second hospital surgery and this time it took four months before they started to grow back. My third hospital surgery was in December 2007 and the polyps started to return within three weeks. My history leads me to believe that I have a high prevalence of biofilm-forming bacteria, which is the cause of my rapid polyp formation and most of the research that I’m presently doing is based on this.

I would like to make you all aware of another drug that could potential cause us some problems and that's the cholesterol lower drugs that contain STATINS. If I take an aspirin within two hours I’m unconscious on the floor. Twice I have taken a medication that contains STATINS and each time I was unconscious on the floor within five hours.

The prevalence of Samterssamters Date: Wednesday, May 28, 2008, 11:51 PM

Hi! Does anyone know what approximately could be the prevalence ofSamters Triad? I went to see an ear specialist this week and he askedme "How many are you?" :) I could not answer that question and sinceI'm seeing him again tomorrow I thought it would be nice to be able togive him at least some kind of questimate then. Have a nice day!

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My hunch is that we are a fairly rare breed. Here in the UK there is but one identified samters specialist with a population of 55 million so if there were more diagnosed cases I think there would be more specialists, other than ENT surgeons.

It seems the root of our problems is more allergy related but at present the most likely treatment we are offered is surgery - dealing with the effect rather than the cause.

I had years of sinusitis aggravated by allergies and hay fever. Asthma came on when I was 54 and I worked out my aspirin allergy at about the same time. I have two sisters and a brother who had childhood asthma but I escaped that until recently but fortunately they don't have the samters triad.

It is the random nature of the condition that gets me. I can have a reasonable period. I walked miles around the world famous classical gardens at Stowe http://www.nationaltrust.org.uk/main/w-vh/w-visits/w-findaplace/w-stowegardens/w-stowegardens-photo_gallery.htm on Thursday without a problem or need of a puffer. If you look at the gallery perhaps it was because I touched heaven! Today back at home and really debilitated as I am blocked up, wheezy and have a lovely headache. Why?

Ah well Stowe was on the list of places to go before I leave this world so can't complain can I.

I am trying the 2 orange a day idea but no noticeable change after about 2 weeks now.

Mike

samters From: ekren@...Date: Sat, 31 May 2008 13:34:39 -0500Subject: RE: The prevalence of Samters

In 1961 at the age of 41 allergies and nasal polyps hit my father like a ton of bricks. He had multiple polyp surgeries and continued to have polyps until he passed away at the age of 83. He never experienced any asthma problems. However he did listen to all of the TV commercials that said that a person should take an aspirin a day for a healthy heart. This weakened his system and after 3 months he came down with bells palsy.

In 1990 at the age of 39 allergies and nasal polyps hit me like a ton of bricks. Within two years I was also experiencing multiple asthma attacks between June 1 and September 30. In 1993 I developed Aspiring Induced Asthma. I contacted the two leading allergists in my community and they told me that I wasn’t allergic to anything. In 1995 I meet an ENT instructor from the Mayo Clinic and he told me that Mayo refers their tough allergy cases to a specific allergist. This allergist told me that I was allergic to duct mites, pine trees and Mold. I found out that most conventional allergists do not have the ability to test a patient for Mold allergies. I started my desensitizing for mold in October 1995 and since then most of my asthma attacks have been medication related.

From 1991 to 1996 I had about twelve “excises for relief” procedures or what I like to call “white knuckle” polypectomies. My first hospital polyp surgery was in 1996 and within two weeks the polyps were growing back. In 2001 I had my second hospital surgery and this time it took four months before they started to grow back. My third hospital surgery was in December 2007 and the polyps started to return within three weeks. My history leads me to believe that I have a high prevalence of biofilm-forming bacteria, which is the cause of my rapid polyp formation and most of the research that I’m presently doing is based on this.

I would like to make you all aware of another drug that could potential cause us some problems and that's the cholesterol lower drugs that contain STATINS. If I take an aspirin within two hours I’m unconscious on the floor. Twice I have taken a medication that contains STATINS and each time I was unconscious on the floor within five hours.

The prevalence of Samterssamters Date: Wednesday, May 28, 2008, 11:51 PM

Hi! Does anyone know what approximately could be the prevalence ofSamters Triad? I went to see an ear specialist this week and he askedme "How many are you?" :) I could not answer that question and sinceI'm seeing him again tomorrow I thought it would be nice to be able togive him at least some kind of questimate then. Have a nice day!

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Hi Mike, Wow, Stow is beautiful!! Near us (40 minutes drive) we have Stourhead, which is similar, but less grand. Very beautiful in autumn as the trees there are magnificent. Have you seen Dr Nasser, or are you due to see him? BeckyMike Hammond <rovenmike@...> wrote: My hunch is that we are a fairly rare breed. Here in the UK there is but one identified samters specialist with a population of 55 million so if there were more diagnosed cases I think there would

be more specialists, other than ENT surgeons. It seems the root of our problems is more allergy related but at present the most likely treatment we are offered is surgery - dealing with the effect rather than the cause. I had years of sinusitis aggravated by allergies and hay fever. Asthma came on when I was 54 and I worked out my aspirin allergy at about the same time. I have two sisters and a brother who had childhood asthma but I escaped that until recently but fortunately they don't have the samters triad. It is the random nature of the condition that gets me. I can have a reasonable period. I walked miles around the world famous classical gardens at Stowe http://www.nationaltrust.org.uk/main/w-vh/w-visits/w-findaplace/w-stowegardens/w-stowegardens-photo_gallery.htm on Thursday without a problem or need of a puffer. If you look at the gallery perhaps it was because I touched heaven! Today back at home and really debilitated as I am blocked up, wheezy and have a lovely headache. Why? Ah well Stowe was on the list of places to go before I leave this world so can't complain can I. I am trying the 2 orange a day idea but no noticeable change after about 2 weeks now. Mike samters From: ekrenmchsiDate: Sat, 31 May 2008 13:34:39 -0500Subject: RE: The prevalence of Samters In 1961 at the age of 41 allergies and nasal polyps hit my father like a ton of bricks. He had multiple polyp surgeries and continued to have polyps until he passed away at the age of 83. He never experienced any asthma problems. However he did listen to all of the TV commercials that said that a person should take an aspirin a day for a healthy heart. This weakened his system and after 3 months he came down with bells palsy. In 1990 at the age of 39 allergies and nasal polyps hit me like a ton of bricks. Within two years I was also experiencing multiple asthma attacks between June 1 and September 30. In 1993 I developed Aspiring Induced Asthma. I contacted the two leading allergists in my community and they told me that I wasn’t allergic to anything. In 1995 I meet an ENT instructor from

the Mayo Clinic and he told me that Mayo refers their tough allergy cases to a specific allergist. This allergist told me that I was allergic to duct mites, pine trees and Mold. I found out that most conventional allergists do not have the ability to test a patient for Mold allergies. I started my desensitizing for mold in October 1995 and since then most of my asthma attacks have been medication related. From 1991 to 1996 I had about twelve “excises for relief” procedures or what I like to call “white knuckle” polypectomies. My first hospital polyp surgery was in 1996 and within two weeks the polyps were growing back. In 2001 I had my second hospital surgery and this time it took four months before they started to grow back. My third hospital surgery was in December 2007 and the polyps started to return within three weeks. My history leads me to believe that I have a high prevalence

of biofilm-forming bacteria, which is the cause of my rapid polyp formation and most of the research that I’m presently doing is based on this. I would like to make you all aware of another drug that could potential cause us some problems and that's the cholesterol lower drugs that contain STATINS. If I take an aspirin within two hours I’m unconscious on the floor. Twice I have taken a medication that contains STATINS and each time I was unconscious on the floor within five hours. The prevalence of Samterssamters Date: Wednesday, May 28, 2008, 11:51 PM Hi! Does anyone know what approximately could be the prevalence ofSamters Triad? I went to see an ear specialist this week and he askedme "How many are you?" :) I could not answer that question and sinceI'm seeing him again tomorrow I thought it would be nice to be able togive him at least some kind of questimate then. Have a nice day! Get fish-slapping on Messenger! Play Now

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I don't think aspirin-induced asthma and Samters are the same thing,

so I question thier results. It's semantics, and I have talked about

it many times here before, but we do not have aspirin-induced asthma,

not exactly. Because even when we don't take aspirin, we still have

symptoms.

Other people like my mother, for example, have aspirin-induced

asthma, meaning that they ONLY have symptoms when they take aspirin.

My mom and her mom both only have asthma symptoms when they take

aspirin and at no other times.

The trouble comes in knowing what the researchers meant. Did they

mean aspirin-induced asthma, or did they mean Samter's triad or

Samter's syndrome? Impossible to tell for sure.

But here's another way to look at it: There are about 20 million

Americans with asthma. If even five percent of them have Samter's

syndrome, that would mean one million Americans with Samters ... or

one in every 300 people in the States. I suppose it is possible, but

I just find it very hard to believe. We are one of the only if not

the only Samter's group out there and we've only got several hundred

members. Granted only a percentage would ever find this group, but I

don't think it would be such a tiny percentage.

Other researchers, I believe, have pegged it at 10 to 15 percent of

asthmatics -- 15 percent of 20 million asthmas would be one in 100

Americans. Again, possible. But hard for me to believe.

Lori

> >

> > Hi! Does anyone know what approximately could be the prevalence of

> > Samters Triad? I went to see an ear specialist this week and he

asked

> > me " How many are you? " :) I could not answer that question and

since

> > I'm seeing him again tomorrow I thought it would be nice to be

able to

> > give him at least some kind of questimate then. Have a nice day!

> >

>

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Hi - you mentioned your allergies to mold, pine and dust mites - me too! I was partially desensitised to mold during my twenties, not sure how far I got through with the program of injections. That was after my second polypectomy (first op was a Cardwell Luc, which lowered my voice considerably). Autumn (fall) was always when my symptoms flared - mold growing on newly rain dampened dry grass. Pine pollen gives me sinusitis, but we live in a pine lined house and I've always wondered if just being in contact with the smell has not been that good. On the other hand, we enjoy an environment free from varnishes and paints and glues...

wishing you health, happiness and prosperity, Beverley Paine

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Hi - it is good to see a fellow Aussie in the group. I live south of Adelaide and see Dr at the Royal Adelaide Hospital every 3 to 6 months to monitor my condition, but mostly because the hospital issues Singluair at NHS prices - the cheapest I can get it through a regular pharmacy is about $80 for a month's supply.

I've been seeing immunologists at the RAH for over a decade and have been desensed three times there - the last time it failed, probably because I'd stopped taking my Singular a couple of months before when I'd been paying full price and we were on a low income.

It's good to have continuity of care with an interested specialist. Back in 1982 I went to the RAH for my second polypectomy and the ENT recommended I see the immunologist who was a wizened white haired fellow who promptly diagnosed Samters, due to my history of aspirin reaction asthma attacks. Every pin prick on my skin test flared and he said I also had dermagraphic skin, a type of continuous hives. My daughter has had this since birth too.

He did determine through a blood test that I was allergic to the mould that grows on citrus and began desensitising me to moulds, plus I think he added in the coriza virus, but that's a bit hazy now. I did get better, marginally, but spent fifteen years eliminating foods and whatever from my diet and lifestyle, generally going crazy and obsessive about it. :-(

Four years ago I was put on effexor for depression and within months had chalked up a $350,000 on an investment property that caused us no end of problems... I also began an online bookstore and decided to start a publishing business. I was on one super high - almost manic - ride!

A year later my depression was back to normal and the GP recommended doubling the dose. Fearing me adding even more crazy stress to our lives on this artificial 'wellness' I stopped taking the drug completely.

Since then I've researched different ways to combat depression and am working hard to keep my activities balanced. I'm lucky because I don't have to work - stay at home mum. I tried working a couple of times when younger but I kept getting sick - chronic sinus and months on antibiotics at a time.

The immunology clinic at the Royal Adelaide Hospital is very familiar with Samters. During one of my desens there was a nurse doing the same challenge and desens - she had developed the disease suddenly and her reactions to food salicylate was very severe. Luckily the first time it happened - in a restaurant - she and her husband were dining with the head of the immunology department of the RAH! I am SO glad I'm not that sensitive.

wishing you health, happiness and prosperity, Beverley Paine

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Thanks for posting your experiences . Remember that the Royal Adelaide do aspirin desensitisations and if you ever find an ENT to match your specifications, the best time to desens is about six weeks after the op, provided everything has healed appropriately. I've put off my FESS operation until next year, which means I've put off my dessens too.

, I found considerable relief at night from using a mattress protector sold for allergies - it completely enclosed the mattress and zipped closed. Lasted for nearly a decade with a regular cloth mattress protector over it. Took a bit of getting used to but not waking up with breathing difficulties was a blessing.

wishing you health, happiness and prosperity, Beverley Paine

4 BR HOUSE for RENT, $160 p/w, Cape Jervishttp://beverleypaine.com/housetorent/index.html

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  • 6 months later...

Becky

We were in touch some months ago so time for an update. I had FESS in 16th Sept at Ipswich Hospital UK and the operation went well but I picked up a pretty nasty throat infection as was grazed badly during the operation. Since then I finally got a referral from a consultant (and the go ahead from primary health care trust who had blocked it up till then) to Dr Glynis Scadding at the Royal Free ENT hospital and had the first appointment 2 weeks ago. Had a series of tests including allergy and despite taking antihistamin the night before came up very positive to Birch Pollen, Grass Pollen & House dust mite. Confirmed as zero smell too. Samters was confirmed and I am joining her clinical research so it will be blood, DNA and urine tests next time I see her in early March. I am also booked in for an Aspirin Challenge test later in March. Dr Scadding does a nasal drop scheme with lower dosage than oral desens.

I was prescribed Singulair to commence after a 3 week course of Betnesol Nose drops and also Flixonase drops in daily capsules as I gather that removes the need for preservatives. Reading the Singulair notes it is a little worrying with all the potential side effects. Have you had any to concern you?

It was a relief to talk to a medical professional who actually understood the condition I am suffering and who could offer some hope of treatment. The Royal Free is about 10 minutes walk from where I work in London so that makes it easier.

I was back to see the consultant who referred me last Thursday for a follow up and it transpires he trained at Royal Free for 18 months and Dr Scadding was his mentor. He told me he had tried to refer other patients to her in the past but none ever got appointments so I consider myself very fortunate and he was delighted to be able to get in touch with her as a result. Thanks all round. He went on to say she is a world renowned expert and I know there are some of her research papers on the site so again I feel priviledged. I asked the consutant how many samters cases he sees at Ipswich hospital and he said he had not had a case before. The support nurse had never heard of it and the Dr said he only knew in terms of taking exams. After having the obligatory look around the upper reaches of my hooter I was told I had a nasty infection once again so was put on a stiff course of antibiotics.

This morning I gave my cloakroom a clean and joy of joys, I actually could smell the bleach! Never thought that would prove to be a delight in my life but it was. . . . .

We are special group then! Can't say the membership benefits are up to much but at least we can and do support one another.

Hope this email finds you well down there on the south coast.

Best regards

Mike

Date: Mon, 2 Jun 2008 14:01:16 +0100From: beckyb256@...Subject: RE: The prevalence of Samtersrovenmike@...

You would have got a few funny looks too!!!!

Sounds like you gave your children a great childhood!

BeckyMike Hammond <rovenmike@...> wrote:

Becky Once I have seen Dr Nasser I will let you know. I've been in NT for about 30 years now and it became something of a family joke with the children - "Where are we going today dad? Oh no - Not another red brick building please!". They did get to Alton Towers as well and when me and the girls went last year I think I was the oldest on on many of the rides. Well they are 26, 23 & 21 now and all say how pleased they were to have had some culture when they were young and how they appreciate such things much more now. It can't have been so bad. I well remember having some very unwelcoming looks in the early days when we had the 3 children all very young. I was heartened last week that at Waddesdon Manor they actually now offer front loader baby slings as a loan item for those with young children. Mind you it took me 3 hours to get round with the audio guide in hand so I think I would have had a good back ache had I got my 26 year old son on board..... Best regards Mike Date: Sun, 1 Jun 2008 14:05:51 +0100From: beckyb256@...Subject: RE: The prevalence of Samtersrovenmike@...

That is good to hear you are waiting to see Dr Nasser - i would love to know how that goes for you.

Yes - desens is definately best done when polyps are small - that is when it is most effective and least dangerous.

Sounds like you had a wonderful National Trust week. We have been members for a few years now, but don't make the most of it. It is quite difficult wih a dog and 3 children who all run wild! They're not too, bad, but it seems like too much of an effort, and a lot of driving.

A beautiful place we like to visit is the Chalice Well in Glastonbury - it's very beautiful all year round. Again, I haven't been there for about a year....

Since we've got our dog, I just go for local walks as we live in the countyside.

Anyway, best of luck for your appointment.

BeckyMike Hammond <rovenmike@...> wrote:

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Hi Mike! It's good to hear from you, and I'm so glad you have Dr Scadding as she is excellent - she wanted to see me too, but as I was Dr Nasser's patient, I didn't really need to see her and it would have been more travelling. My dad, Dr Pumphrey is a retired Consultant Immunologist and both Dr Scadding and Dr Nasser are his colleagues in similar fields, so when he told them about me, they both wanted to see me !!! So I was lucky too in that I got a straight referral to the one of my choice which was Dr Nasser as it is slightly easier to get to see him. Anyway, at least you are being seen by one of the best in this field in the country and hopefully she will help you be as well as posssible. I'd be really interested to hear how your desens goes with the nasal drop regime. Best wishes, and I hope you can smell some of the wonderful Christmassy

smells - I smelt a satsuma the other day when I was pealing it for my daughter and it was so wonderful! My sos is very patchy. BeckyMike Hammond <rovenmike@...> wrote: Becky We were in touch some months ago so time for an update. I had FESS in 16th Sept at Ipswich Hospital UK and the operation went well but I picked up a pretty nasty throat infection as was grazed badly during the operation. Since then I finally got a referral from a consultant (and the go ahead from

primary health care trust who had blocked it up till then) to Dr Glynis Scadding at the Royal Free ENT hospital and had the first appointment 2 weeks ago. Had a series of tests including allergy and despite taking antihistamin the night before came up very positive to Birch Pollen, Grass Pollen & House dust mite. Confirmed as zero smell too. Samters was confirmed and I am joining her clinical research so it will be blood, DNA and urine tests next time I see her in early March. I am also booked in for an Aspirin Challenge test later in March. Dr Scadding does a nasal drop scheme with lower dosage than oral desens. I was prescribed Singulair to commence after a 3 week course of Betnesol Nose drops and also Flixonase drops in daily capsules as I gather that removes the need for preservatives. Reading the Singulair notes it is a little worrying with all the potential side effects. Have you had any to concern

you? It was a relief to talk to a medical professional who actually understood the condition I am suffering and who could offer some hope of treatment. The Royal Free is about 10 minutes walk from where I work in London so that makes it easier. I was back to see the consultant who referred me last Thursday for a follow up and it transpires he trained at Royal Free for 18 months and Dr Scadding was his mentor. He told me he had tried to refer other patients to her in the past but none ever got appointments so I consider myself very fortunate and he was delighted to be able to get in touch with her as a result. Thanks all round. He went on to say she is a world renowned expert and I know there are some of her research papers on the site so again I feel priviledged. I asked the consutant how many samters cases he sees at Ipswich hospital and he said he had not had a case before. The support nurse had never

heard of it and the Dr said he only knew in terms of taking exams. After having the obligatory look around the upper reaches of my hooter I was told I had a nasty infection once again so was put on a stiff course of antibiotics. This morning I gave my cloakroom a clean and joy of joys, I actually could smell the bleach! Never thought that would prove to be a delight in my life but it was. . . . . We are special group then! Can't say the membership benefits are up to much but at least we can and do support one another. Hope this email finds you well down there on the south coast. Best regards Mike Date: Mon, 2 Jun 2008 14:01:16 +0100From: beckyb256 (DOT) co.ukSubject: RE: The prevalence of Samtersrovenmikehotmail You would have got a few funny looks too!!!! Sounds like you gave

your children a great childhood! BeckyMike Hammond <rovenmikehotmail> wrote: Becky Once I have seen Dr Nasser I will let you know. I've been in NT for about 30 years now and it became something of a family joke with the children - "Where are we going today dad? Oh no - Not another red brick building please!". They did get to Alton Towers as well and when me and the girls went last year I think I was the oldest on on many of the rides. Well they are 26, 23 & 21 now and all say how pleased they were to have had some culture when they were young and how they appreciate such things much more now. It can't have been so bad. I well remember having some very unwelcoming looks in the early days when we had the 3 children all very young. I was heartened last week

that at Waddesdon Manor they actually now offer front loader baby slings as a loan item for those with young children. Mind you it took me 3 hours to get round with the audio guide in hand so I think I would have had a good back ache had I got my 26 year old son on board..... Best regards Mike Date: Sun, 1 Jun 2008 14:05:51 +0100From: beckyb256 (DOT) co.ukSubject: RE: The prevalence of Samtersrovenmikehotmail That is good to hear you are waiting to see Dr Nasser - i would love to know how that goes for you. Yes - desens is definately best done when polyps are small - that is when it is most effective and least dangerous. Sounds like you had a wonderful National Trust week. We have been members for a few years now, but don't make the most of it. It is quite difficult wih a dog and 3 children who all

run wild! They're not too, bad, but it seems like too much of an effort, and a lot of driving. A beautiful place we like to visit is the Chalice Well in Glastonbury - it's very beautiful all year round. Again, I haven't been there for about a year.... Since we've got our dog, I just go for local walks as we live in the countyside. Anyway, best of luck for your appointment. BeckyMike Hammond <rovenmikehotmail> wrote: Get 5GB of online storage for free! Get it Now! Sent from . A Smarter Email. Read amazing stories to your kids on Messenger. Try it Now!

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Hi Mike,Great to read that you are now under the care of Dr. Scadding. I will be following your progress and am totally jealous to see that you already are able to smell after such a short course of antibiotics. My husband still has no smell/taste but is vastly improved since he began attending Dr. Scadding. His allergy tests have shown him to only be sensitive to aspirin. At the minute he is on 12 drops of lysine per nostril. He reacted to 15mg of aspirin (if memory serves me correct) and as a result his progress is slow but steady. Amazingly he has had two chest infections in the last twelve months which have not developed into asthma. Please keep your progress posted as I for one will be following you every step of the way. BredaFrom: Bannister <beckyb256@...>samters Sent: Monday, December 8, 2008 11:15:06 AMSubject: RE: The prevalence of Samters

Hi Mike! It's good to hear from you, and I'm so glad you have Dr Scadding as she is excellent - she wanted to see me too, but as I was Dr Nasser's patient, I didn't really need to see her and it would have been more travelling. My dad, Dr Pumphrey is a retired Consultant Immunologist and both Dr Scadding and Dr Nasser are his colleagues in similar fields, so when he told them about me, they both wanted to see me !!! So I was lucky too in that I got a straight referral to the one of my choice which was Dr Nasser as it is slightly easier to get to see him. Anyway, at least you are being seen by one of the best in this field in the country and hopefully she will help you be as well as posssible. I'd be really interested to hear how your desens goes with the nasal drop regime. Best wishes, and I hope you can

smell some of the wonderful Christmassy

smells - I smelt a satsuma the other day when I was pealing it for my daughter and it was so wonderful! My sos is very patchy. BeckyMike Hammond <rovenmikehotmail (DOT) com> wrote: Becky We were in touch some months ago so time for an update. I had FESS in 16th Sept at Ipswich Hospital UK and the operation went well but I picked up a pretty nasty throat infection as was grazed badly during the operation. Since then I finally got a referral from a consultant (and the go ahead from

primary health care trust who had blocked it up till then) to Dr Glynis Scadding at the Royal Free ENT hospital and had the first appointment 2 weeks ago. Had a series of tests including allergy and despite taking antihistamin the night before came up very positive to Birch Pollen, Grass Pollen & House dust mite. Confirmed as zero smell too. Samters was confirmed and I am joining her clinical research so it will be blood, DNA and urine tests next time I see her in early March. I am also booked in for an Aspirin Challenge test later in March. Dr Scadding does a nasal drop scheme with lower dosage than oral desens. I was prescribed Singulair to commence after a 3 week course of Betnesol Nose drops and also Flixonase drops in daily capsules as I gather that removes the need for preservatives. Reading the Singulair notes it is a little worrying with all the potential side effects. Have you had

any to concern

you? It was a relief to talk to a medical professional who actually understood the condition I am suffering and who could offer some hope of treatment. The Royal Free is about 10 minutes walk from where I work in London so that makes it easier. I was back to see the consultant who referred me last Thursday for a follow up and it transpires he trained at Royal Free for 18 months and Dr Scadding was his mentor. He told me he had tried to refer other patients to her in the past but none ever got appointments so I consider myself very fortunate and he was delighted to be able to get in touch with her as a result. Thanks all round. He went on to say she is a world renowned expert and I know there are some of her research papers on the site so again I feel priviledged. I asked the consutant how many samters cases he sees at Ipswich hospital and he said he had not had a case before. The

support nurse had never

heard of it and the Dr said he only knew in terms of taking exams. After having the obligatory look around the upper reaches of my hooter I was told I had a nasty infection once again so was put on a stiff course of antibiotics. This morning I gave my cloakroom a clean and joy of joys, I actually could smell the bleach! Never thought that would prove to be a delight in my life but it was. . . . . We are special group then! Can't say the membership benefits are up to much but at least we can and do support one another. Hope this email finds you well down there on the south coast. Best regards Mike Date: Mon, 2 Jun 2008 14:01:16 +0100From: beckyb256 (DOT) co.ukSubject: RE: The prevalence of Samtersrovenmikehotmail (DOT) com You would have got a few funny looks too!!!! Sounds

like you gave

your children a great childhood! BeckyMike Hammond <rovenmikehotmail (DOT) com> wrote: Becky Once I have seen Dr Nasser I will let you know. I've been in NT for about 30 years now and it became something of a family joke with the children - "Where are we going today dad? Oh no - Not another red brick building please!". They did get to Alton Towers as well and when me and the girls went last year I think I was the oldest on on many of the rides. Well they are 26, 23 & 21 now and all say how pleased they were to have had some culture when they were young and how they appreciate such things much more now. It can't have been so bad. I well remember having some very unwelcoming looks in the early days when we had the 3 children all very young. I

was heartened last week

that at Waddesdon Manor they actually now offer front loader baby slings as a loan item for those with young children. Mind you it took me 3 hours to get round with the audio guide in hand so I think I would have had a good back ache had I got my 26 year old son on board..... Best regards Mike Date: Sun, 1 Jun 2008 14:05:51 +0100From: beckyb256 (DOT) co.ukSubject: RE: The prevalence of Samtersrovenmikehotmail (DOT) com That is good to hear you are waiting to see Dr Nasser - i would love to know how that goes for you. Yes - desens is definately best done when polyps are small - that is when it is most effective and least dangerous. Sounds like you had a wonderful National Trust week. We have been members for a few years now, but don't make the most of it. It is quite difficult wih a dog and 3

children who all

run wild! They're not too, bad, but it seems like too much of an effort, and a lot of driving. A beautiful place we like to visit is the Chalice Well in Glastonbury - it's very beautiful all year round. Again, I haven't been there for about a year.... Since we've got our dog, I just go for local walks as we live in the countyside. Anyway, best of luck for your appointment. BeckyMike Hammond <rovenmikehotmail (DOT) com> wrote: Get 5GB of online storage for free! Get it Now! Sent from . A Smarter Email. Read amazing stories to your kids on Messenger. Try it Now!

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