Re: Hospital Report

[Guest guest]

Thank you for posting this file. I took a look at it and I'm curious. Are you in the U.S.? I am not familiar with Klarasid. Would you say this is the medication that helped you the most? Again, thank you for sharing your information with us. We are all lucky to have this group.

Jane

From: Belbin <stoneywood21@...>Subject: Hospital Reportsamters Date: Friday, November 28, 2008, 4:23 AM

You may find this interesting.I have posted a file on our site containing diary excerpts on recent treatment which has been very successful.My point is that, after 20 years of depressing discharge with no sense of smell, 60% improvement was experienced in three weeks, before I started on the antibiotic. This has further improved.I still have three weeks of antibiotics to take, and will keep you informed of the developments when I stop. Regards,

[Guest guest]

Hello Jane

Not USA, Scotland, UK

The Klaracid is an antibiotic which was meant to, and probably has,

cleared stubborn infections high up in the cranium.

The interesting thing is that the Pizotifen, which was not prescribed

for the task, has reduced my sinusitus to " normal " function.

(Significant improvement weeks before starting antibiotic.)

Pizotifen is listed as a serotonin, histamine, and tryptamine

inhibitor, and is prescribed mainly for migrain headaches.

Any ideas/thoughts will be welcome.

Regards, .

>

> From: Belbin <stoneywood21@...>

> Subject: Hospital Report

> samters

> Date: Friday, November 28, 2008, 4:23 AM

>

>

>

>

>

>

> You may find this interesting.

> I have posted a file on our site containing diary excerpts on

recent

> treatment which has been very successful.

> My point is that, after 20 years of depressing discharge with no

sense

> of smell, 60% improvement was experienced in three weeks, before I

> started on the antibiotic.

> This has further improved.

> I still have three weeks of antibiotics to take, and will keep you

> informed of the developments when I stop.

> Regards,

>

[Guest guest]

How do you know that it is the Pizotifen that cleared the sinuses and not the Klaracid? I googled the Pizotifen because I am also a migraine sufferer. I would love to think that there might be a medicine out there that could reduce my migraines and my sinus infections.

Jane

From: Belbin <stoneywood21@...>Subject: Re: Hospital Reportsamters Date: Friday, November 28, 2008, 1:16 PM

Hello Jane Not USA, Scotland, UKThe Klaracid is an antibiotic which was meant to, and probably has, cleared stubborn infections high up in the cranium.The interesting thing is that the Pizotifen, which was not prescribed for the task, has reduced my sinusitus to "normal" function. (Significant improvement weeks before starting antibiotic.)Pizotifen is listed as a serotonin, histamine, and tryptamine inhibitor, and is prescribed mainly for migrain headaches.Any ideas/thoughts will be welcome.Regards, .> > From: Belbin <stoneywood21@ ...>> Subject: Hospital Report> samters@groups .com> Date: Friday, November 28, 2008, 4:23 AM> > > > > > > You may find this interesting.> I have posted a file on our site containing diary excerpts on recent > treatment which has been very successful.> My point is that, after 20 years of depressing discharge with no sense > of smell, 60% improvement was experienced in three weeks, before I > started on the antibiotic. > This has further improved.> I still have three weeks of

antibiotics to take, and will keep you > informed of the developments when I stop. > Regards, >

[Guest guest]

Hi ,Is there any chance that you could direct me to the report that you refer to. My husband has Samter's Triad in fact I would say that he has Samter's Quartet. He is on long term Distaclor so am very interested in your posting. When you speak of infections high up in the cranium to what are you referring. I know that in my husbands case polyps or infections have cause major problems e.g. thinning of cribriform plate and nasal bones. He also has ear problems, no taste or smell, oesteoporosis to name but a few things this disease has bestowed on him. We are in Ireland, but attend a Doctor in London.From: Belbin <stoneywood21@...>samters Sent: Friday, November 28, 2008 8:16:25 PMSubject: Re: Hospital Report

Hello Jane

Not USA, Scotland, UK

The Klaracid is an antibiotic which was meant to, and probably has,

cleared stubborn infections high up in the cranium.

The interesting thing is that the Pizotifen, which was not prescribed

for the task, has reduced my sinusitus to "normal" function.

(Significant improvement weeks before starting antibiotic.)

Pizotifen is listed as a serotonin, histamine, and tryptamine

inhibitor, and is prescribed mainly for migrain headaches.

Any ideas/thoughts will be welcome.

Regards, .

>

> From: Belbin <stoneywood21@ ...>

> Subject: Hospital Report

> samters@groups .com

> Date: Friday, November 28, 2008, 4:23 AM

>

>

>

>

>

>

> You may find this interesting.

> I have posted a file on our site containing diary excerpts on

recent

> treatment which has been very successful.

> My point is that, after 20 years of depressing discharge with no

sense

> of smell, 60% improvement was experienced in three weeks, before I

> started on the antibiotic.

> This has further improved.

> I still have three weeks of antibiotics to take, and will keep you

> informed of the developments when I stop.

> Regards,

>

[Guest guest]

Jane

I do not positively know what has made the difference.

Just a very specific coincidence.

The clue is in this.(Significant improvement weeks before starting

antibiotic.)

DGB

> >

> > From: Belbin <stoneywood21@ ...>

> > Subject: Hospital Report

> > samters@groups .com

> > Date: Friday, November 28, 2008, 4:23 AM

> >

> >

> >

> >

> >

> >

> > You may find this interesting.

> > I have posted a file on our site containing diary excerpts on

> recent

> > treatment which has been very successful.

> > My point is that, after 20 years of depressing discharge with no

> sense

> > of smell, 60% improvement was experienced in three weeks, before

I

> > started on the antibiotic.

> > This has further improved.

> > I still have three weeks of antibiotics to take, and will keep

you

> > informed of the developments when I stop.

> > Regards,

> >

>

[Guest guest]

Theory is that short course antibiotics only clear " front end

infections. Takes longer course to clear infections lodged i higher

sinuses and bone. This can often to happen in Samterites.

Report is in file section of this site. You may need a reader to open

DGB

> >

> > From: Belbin <stoneywood21@ ...>

> > Subject: Hospital Report

> > samters@groups .com

> > Date: Friday, November 28, 2008, 4:23 AM

> >

> >

> >

> >

> >

> >

> > You may find this interesting.

> > I have posted a file on our site containing diary excerpts on

> recent

> > treatment which has been very successful.

> > My point is that, after 20 years of depressing discharge with no

> sense

> > of smell, 60% improvement was experienced in three weeks, before

I

> > started on the antibiotic.

> > This has further improved.

> > I still have three weeks of antibiotics to take, and will keep

you

> > informed of the developments when I stop.

> > Regards,

> >

>

[Guest guest]

Like you I am one of the few UK based members of this group and I have much sympathy with your position. However we all have to acknowledge that this is one of the few resources that provide some help, support and advice to us sufferers so I would not wish to knock it in any way. I have toyed with starting a group on Facebook as I am sure that would reach a wider audience but the pressure of my work has precluded that to date.

I understand that desens therapy went out of fashion here in the UK 20 years ago after if had been used without sufficient medical supervision and many lives were lost, meanwhile in the USA it has become a more routine procedure. Certainly reading the outcome for some of our fellow sufferers it seems to be the closest thing to a silver bullet that is available. The thought of being on such high doses of aspirin, in the long term, is something that I find a little hard to come to terms with.

For my part I have had sinus problems for years and was slowly being referred on from one doctor to another when a CAT scan identified that my nasal polyps were present throughout my sinuses. At the same time I worked out that I had become allergic to aspirin after taking Anadin Extra (paractemol with some aspirin) and then experiencing the side effects we all know about. Google told me about aspirin sensitivity but I didn’t find Samters then. When I met the ENT surgeon who was to perform the FESS he told me I was ASA Triad but other than the surgery did not suggest any other line of treatment. Thanks again to Google the ASA Triad diagnosis took me to the Samters group on and what a relief it was to listen or contact others going through the same experiences. The Samters site led me to Dr Scadding in London, a specialist of world renown, who I would never had found without it.

Having seen Dr Scadding only 2 weeks ago I have another week to go on a 3 week course of Betamethasone nose drops then I change over to Flixonase Nasules. Meanwhile I will be commencing 10mg daily Singulair in another 2 weeks. I am booked in for an Aspirin challenge in late March of next year, subject to a review of how the long term Nasules and Singulair work out. Fortunately Qvar has kept the asthma at bay for several months now but then I think mine is more seasonal.

Last week I had a follow up visit with the Ipswich ENT following my FESS in Sept of this year and the obligatory route around revealed that I had another nasty infection so I was put on Klaricid (Clarithromycin for our USA brethren) 500mg twice a day for 14 days and after about 5 days I had some sense of smell!

Not sure what your whole drug regime is but your anger could be the Singulair side effects perhaps? It worries me that I am about to expose myself to that risk.

A month or so ago the theme was irrigation and certainly my Grossan pump that I bought from USA has helped me. We also had a theme of fresh oranges but that has died away. I guess the bottom line is we are all clutching at straws and while our numbers are so low the big drug companies see no market (and profit) in us. Count your blessings, we have the NHS here so my drugs cost me a £10 a month exemption certificate.

Best regards and don’t let this bas***d of a condition grind you down.

Mike

Get Windows Live Messenger on your Mobile. Click Here!

[Guest guest]

there are just so many aspects of this dreaded

disease that I find myself perhaps just reading thecontents of the ‘densensitised’

issues as they’re just not available to me so therefore don’t really concern me

as such. I still read them but don’t actively respond because of this.

From: Bannister

[mailto:beckyb256@...]

Sent: Wednesday, 10 December 2008 9:22 AM

samters

Subject: Re: Re: Hospital Report

Hi ,

Are you hacked off because you've had it and it didn't work,

or because you don't want to do it, or it isn't available to you...or what/why?

I find I do respond to posts about desens simply because I

WAS desensitised 18 months ago and the process was a big deal...and because as

far as I can gather, i am one of the few on here who has had it done in the UK.

I have been on this Samters forum for 7 years now, and for almost 6 of those

years I wasn't desens and didn't want to be so those posts about desens didn't

appeal to me then.

But we have to talk about what is relevant to us.

There are many on here who are not desens...and anyway, the

issues are still the same for me - I am not cured at all and I still take the

same amount of all my medications, so desens has NOT been a miracle cure - it

just has slighty improved my situation and I am generally less ill overall, but

not wonderfully so.

Maybe those who haven't been desens would like to post and

participate more????

Does this site still have mods?

Regards,

Becky

Belbin <stoneywood21@...> wrote:

Hi Becky

The report is of no consequence, but is in the file area of the

forum.

I AM hacked off with desensitisation though.

Regards david.

> I was disappointed that I did not get any feedback on my

> recent " Hospital Report " request.

> I am even more disappointed that we are back on the desensitisation

> theme.

> Year on year, month on month, day by day, the same questions, the

same

> answers.

> The forum should be re-named Desensitisation, allowing those not

> interested in this procedure to bypass it.

> DGB

>

[Guest guest]

Your e-mail states my feelings exactly Becky. Desens is a big part of this process and we talk about it because it is an on-going process and it helps to get others views on the process. Maybe for we could all title any e-mails regarding Desens as "Desensitization Again!" I think we have to remember that we get on this site to not only continue our education on Samters, but also to support each other. Sorry that you did not feel supported. However, I hope all on this site will continue to post about their desens. experience as well as other topics related to Samters. , press the Delete button if there is something you don't want to read.

Jane

Hi BeckyThe report is of no consequence, but is in the file area of the forum.I AM hacked off with desensitisation though.Regards david.> I was disappointed that I did not get any feedback on my > recent "Hospital Report" request.> I am even more disappointed that we are back on

the desensitisation > theme.> Year on year, month on month, day by day, the same questions, the same > answers.> The forum should be re-named Desensitisation, allowing those not > interested in this procedure to bypass it.> DGB>

[Guest guest]

Desens is not a miracle. But it definitely is an improvement. I had mine in April this year.

I still get sinus problems and sometimes a re-occurrence of polyps. Small dose of prednisone and I am good for a few months.

Again not a miracle cure but I am much better.

Re: Re: Hospital Report

Your e-mail states my feelings exactly Becky. Desens is a big part of this process and we talk about it because it is an on-going process and it helps to get others views on the process. Maybe for we could all title any e-mails regarding Desens as "Desensitization Again!" I think we have to remember that we get on this site to not only continue our education on Samters, but also to support each other. Sorry that you did not feel supported. However, I hope all on this site will continue to post about their desens. experience as well as other topics related to Samters. , press the Delete button if there is something you don't want to read.

Jane

Hi Becky

The report is of no consequence, but is in the file area of the

forum.

I AM hacked off with desensitisation though.

Regards david.

> I was disappointed that I did not get any feedback on my

> recent "Hospital Report" request.

> I am even more disappointed that we are back on

the desensitisation

> theme.

> Year on year, month on month, day by day, the same questions, the

same

> answers.

> The forum should be re-named Desensitisation, allowing those not

> interested in this procedure to bypass it.

> DGB

>

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

[Guest guest]

I have not been desensed because asprin is deadly for me. The last time I took a baby asprin, I stopped breathing altogether. It is a scary situation to be in when you are wide awake and you can breath in but not out. I was slowly suffocating. I never want to experience that again. My doctor told me to stay clear of asprin. I cannot even handle it in my hand. I have chosen to take the easy road on the desens. I have done the onion juice and it worked but I did not. I ate the two oranges but I stopped that too even though I felt better. Now I am back to taking my prednisone and loving it. I have my last doctoral residency coming up Dec. 12th thru 19th and I cannot afford to miss any time from it. I am taking the prednisone and my doctor gave me the new spray Veramyst and she also gave me

Xyzal instead of Allegra. I am sick enough to try anything now. The polyps are not back but I have sinus infections and asthma really bad. I just want to get through the residency and take the next year to complete the dissertation. We are all different and we are all suffering. I am personally happy for anyone who finds something that works for them. The rest of us are still searching for our miracle and I am expecting my to come. Happy Holidays everyone and be blessed.

From: Bannister <beckyb256@...>samters Sent: Tuesday, December 9, 2008 5:21:36 PMSubject: Re: Re: Hospital Report

Hi ,

Are you hacked off because you've had it and it didn't work, or because you don't want to do it, or it isn't available to you...or what/why?

I find I do respond to posts about desens simply because I WAS desensitised 18 months ago and the process was a big deal...and because as far as I can gather, i am one of the few on here who has had it done in the UK. I have been on this Samters forum for 7 years now, and for almost 6 of those years I wasn't desens and didn't want to be so those posts about desens didn't appeal to me then.

But we have to talk about what is relevant to us.

There are many on here who are not desens...and anyway, the issues are still the same for me - I am not cured at all and I still take the same amount of all my medications, so desens has NOT been a miracle cure - it just has slighty improved my situation and I am generally less ill overall, but not wonderfully so.

Maybe those who haven't been desens would like to post and participate more????

Does this site still have mods?

Regards,

Becky Belbin <stoneywood21@...> wrote:

Hi BeckyThe report is of no consequence, but is in the file area of the forum.I AM hacked off with desensitisation though.Regards david.> I was disappointed that I did not get any feedback on my > recent "Hospital Report" request.> I am

even more disappointed that we are back on the desensitisation > theme.> Year on year, month on month, day by day, the same questions, the same > answers.> The forum should be re-named Desensitisation, allowing those not > interested in this procedure to bypass it.> DGB>

[Guest guest]

It is great to get a bit of a response from this topic that started off, as, although we all still suffer with Samters, most of us barely post, so if we posted and updated more (and many thanks to those who DO keep this site going) then perhaps we would cover more topics and miss less of those that are important to the ones who posted. I am definately guilty of this, and would like to be more active on this site and supporrtive when I can. , and others, please feel you can post with your stories and issues, and maybe we can get this group back out of it's sliggish slump. When I joined 7+ years ago this site was so active with 10-20+ posts a day, and it was very supportive too. I would like ofr it to get back to that if possible. We do have a lotof members on here, so maybe we can kick start it back up and running. Thank you

for highlighting this, and I am genuinely sorry for missing a post of yours that was important to you. I guess this must happen to others too, as we have been so quiet recently. Seasons greeting and best wishes to all Samterites and their families! Hugs BeckyChartacJS@... wrote: Desens is not a miracle. But it definitely is an improvement. I had mine in April this year.I still get sinus

problems and sometimes a re-occurrence of polyps. Small dose of prednisone and I am good for a few months.Again not a miracle cure but I am much better. Re: Re: Hospital Report Your e-mail states my feelings exactly Becky. Desens is a big part of this process and we talk about it because it is an on-going process and it helps to get others views on the process. Maybe for we could all title any e-mails regarding Desens as

"Desensitization Again!" I think we have to remember that we get on this site to not only continue our education on Samters, but also to support each other. Sorry that you did not feel supported. However, I hope all on this site will continue to post about their desens. experience as well as other topics related to Samters. , press the Delete button if there is something you don't want to read. Jane Hi BeckyThe report is of no consequence, but is in the file area of the forum.I AM hacked off with desensitisation though.Regards david.> I was disappointed that I did not get any feedback on my > recent "Hospital Report" request.> I am even more disappointed that we are back on the desensitisation > theme.> Year on year, month on month, day by day, the same questions, the same > answers.> The forum should be re-named Desensitisation, allowing those not > interested in this procedure to bypass it.> DGB> Listen to 350+ music, sports, news radio stations – including songs for the holidays – FREE while you browse. Start Listening Now!

[Guest guest]

Hi , thank you for posting, and you are absolutely right - there are many aspects to this disease, and so many different topics are generated, some are relevant to us at times and some are not. Of course we can't all respond to every post, but I would love for this group to be more active again, and I will definately try to participate more when I can. It is good to see this topic started has brought some of us out of the woodwork in empathy and with interest. Becky Robins <soniarobins@...> wrote: there are just so many aspects of this dreaded disease that I find myself perhaps just reading thecontents of the ‘densensitised’ issues as they’re just not available to me so therefore don’t really concern me as such. I still read them but don’t actively respond because of this. From: Bannister [mailto:beckyb256 (DOT) co.uk] Sent: Wednesday, 10 December 2008 9:22 AMsamters Subject: Re: Re: Hospital Report Hi , Are you hacked off because you've had it and it didn't work, or because you don't want to do it, or it isn't available to you...or what/why? I find I do respond to posts about desens simply because I WAS desensitised 18 months ago and the process was a big deal...and because as far as I can gather, i am one of the few on here who has had it done in the UK. I have been on this Samters forum

for 7 years now, and for almost 6 of those years I wasn't desens and didn't want to be so those posts about desens didn't appeal to me then. But we have to talk about what is relevant to us. There are many on here who are not desens...and anyway, the issues are still the same for me - I am not cured at all and I still take the same amount of all my medications, so desens has NOT been a miracle cure - it just has slighty improved my situation and I am generally less ill overall, but not wonderfully so. Maybe those who haven't been desens would like to post and participate more???? Does this

site still have mods? Regards, Becky Belbin <stoneywood21aol> wrote: Hi BeckyThe report is of no consequence, but is in the file area of the forum.I AM hacked off with desensitisation though.Regards david.> I was disappointed that I did not get any feedback on my > recent "Hospital Report" request.> I am even more disappointed that we are back on the desensitisation > theme.> Year on year, month on month, day by day, the same questions, the same > answers.> The forum should be re-named Desensitisation, allowing those not > interested in this procedure to bypass it.> DGB>

[Guest guest]

No need to apologise , this dreaded disease can really be

so incredibly debilitating at times. I know I’ve had phases when I just

want to scream and say why can’t they find a cure?

The treatment varies so dramatically from country to country I’ve

noticed, what’s available to one isn’t to another.

So many doctors I’ve found still seem to be in the dark

regarding ‘Samters’, some look at you as though you’re imagining

it all while others just don’t do certain treatments at all and tell you

to just get on with your life as best you can, others say ‘oh the polyps

will return but we’ll just do another surgery, put up with it in the

meantime’.

It would have to be one of THE most frustrating diseases I’ve

ever come across. I remember when I was first told I actually had Samters

I was excited because, wow, I have a name for this now so I can get treatment

for it and be cured. Ha! Try explaining it to someone who doesn’t have

it, just something as simple as taking breathing normally for granted, or being

able to smell something.

I live in hope, maybe one day they’ll have a cure –

but is it hope or wishful thinking on my part, probably the latter.

one thing this disease has taught me is to ‘try’

to have patience but it doesn’t always work and at times I really need to

vent, so hang in there.

From: Belbin

[mailto:stoneywood21@...]

Sent: Wednesday, 10 December 2008 10:53 PM

samters

Subject: Hospital Report

Firstly, let me apologise for my testy post. I

have tried to open

up debates in the past and been met with deafening silence and this

one had no greater aspiration.

Belatedly, it seems to have given you all " a poke with a sharp stick "

and now my typing speeds preclude the possibility of answering you

all individually.

No, desensitisation is not available to me, my ENT consultant told me

this morning that it " does not work " , and having needed heart massage

after taking an AlkaSeltzer on a camping trip forty years ago, I aint

goin to argue.

He also dismissed my Pitzotifen theory. Having suffered for so

long with sinusitis, and to see such a radical improvement in three

weeks, I am still sceptical.

Asfyso describes the antibiotic treatment better than I. This is an

imported treatment regime from the USA and has been showing good

success. I have not yet finished the course yet, have an ENT

appointment in six months, and will post again on this subject if

there are further developments.

Not surprisingly, with the " near normal " functioning of my nose, my

asthma has improved and I am successfully risking " forbidden foods " .

Thanks for your responses. Comments and questions are welcome.

.

[Guest guest]

Thanks ,

I don't post often because I work 11 hours a day and I have school work to do for 4-5 hours a night for my doctoral program. I do get into the site maybe 1-2 times per week to read the post. , I wish you the best, All, if I fail to post you know it is because I am too busy. I do enjoy the post. I am back on prednisone along wity Veramist and xlyzal to replace allegra. I hope something helps.

Hi BeckyThe report is of no consequence, but is in the file area of the forum.I AM hacked off with desensitisation though.Regards david.> I was disappointed that I did not get any feedback on my > recent "Hospital Report" request.> I am even more disappointed that we are back on

the desensitisation > theme.> Year on year, month on month, day by day, the same questions, the same > answers.> The forum should be re-named Desensitisation, allowing those not > interested in this procedure to bypass it.> DGB>

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

[Guest guest]

>

> Hi ,

>for instance, would an anti-histamine

have the same effect?<

Hi asfyso

I have tried anti -histamines in the past. With no posative result.