what happened to the group?

[Guest guest]

Hi Trudy,

I'm glad you're back.

Lori usually blocks the spammers after they have posted. She is taking a

break from posting on the group. Ken sort of quit, too. He still shows up

every once in a while under the name q2.

The group is in a lull, I agree. I keep reading and sometimes post and hope

it will perk back up somehow.

Pam

On 4/19/07 11:02 AM, " Trudy " <iamthezookeeper@...> wrote:

> hey all. hope everyone is well. i was gone for quite a long time from

> the group and finally have access to a computer again. i have noticed

> there are a lot of posts from non-samters related posters...kind of

> like spam or something. is that what is happening? i wasn't sure which

> posts were legit or what. do we have another site i don't know about

> where this isn't happening? no big deal, just wondering. thanks. trudy.

>

>

>

--

[Guest guest]

The basic reason is that the moderators used to jump on spam and lock out

the senders, so that spam was kept to an absolute minimum.

There were 3 moderators (including me), in addition to the " owner " ; but now

I don't know that anyone is actively moderating. To be a moderator you

need the owner (or maybe another moderator) to set you up as one.

> From: " Trudy " <iamthezookeeper@...>

> Reply-samters

> Date: Thu, 19 Apr 2007 15:02:50 -0000

> samters

> Subject: what happened to the group?

>

> hey all. hope everyone is well. i was gone for quite a long time from

> the group and finally have access to a computer again. i have noticed

> there are a lot of posts from non-samters related posters...kind of

> like spam or something. is that what is happening? i wasn't sure which

> posts were legit or what. do we have another site i don't know about

> where this isn't happening? no big deal, just wondering. thanks. trudy.

>

>

>

>

>

[Guest guest]

This is a great group. I think my allergist was shocked when I first paid him a visit several years ago and gave him my self diagnois. I was right on target.

what happened to the group?

>

> hey all. hope everyone is well. i was gone for quite a long time from

> the group and finally have access to a computer again. i have noticed

> there are a lot of posts from non-samters related posters...kind of

> like spam or something. is that what is happening? i wasn't sure which

> posts were legit or what. do we have another site i don't know about

> where this isn't happening? no big deal, just wondering. thanks. trudy.

>

>

>

>

>

[Guest guest]

On 4/19/07, Pamela <pam@...> wrote:

> Hi Trudy,

>

> I'm glad you're back.

>

> Lori usually blocks the spammers after they have posted. She is taking a

> break from posting on the group. Ken sort of quit, too. He still shows up

> every once in a while under the name q2.

>

> The group is in a lull, I agree. I keep reading and sometimes post and hope

> it will perk back up somehow.

>

> Pam

I've been reading this group for a while but not really posting. I'm

22 and am going in for a third surgery--I've never really been able to

breathe through my nose, speak normally and have people understand me,

or smell anything except for those year or so pockets of time after my

surgeries.

Samter's definitely led me to develop highly anti-social tendencies

and I have struggled with low self esteem for a long time. I'm happy

to say that I have really started to accept my sniffling, sneezing,

stuffed up self for who I am.

Reading the posts here has really given me a lot of inspiration and

comfort...it's *so* nice to hear other people going through what I

have gone through.

It is disheartening to hear that the group is in a 'lull' -- the posts

on here have been a real blessing to me.

[Guest guest]

I agree the samter group is a good group, but I basically quite

responding to the group after getting the feeling people were using

it for home based remedies and not through a doctor. Which isn't

safe at all. Basically I was concerned when people were trying to

desensitizing themselfs and to me that is only flirting with

trouble. It is a great site for information, but I am get a little

concerned with self treaters giving advice or doing the self

treating. My thoughts only, nothing said here is met for debate or

as an insult. Just plainly my thoughts.

>

> This is a great group. I think my allergist was shocked when I

first paid him a visit several years ago and gave him my self

diagnois. I was right on target.

>

>

> what happened to the group?

> >

> > hey all. hope everyone is well. i was gone for quite a long time

from

> > the group and finally have access to a computer again. i have

noticed

> > there are a lot of posts from non-samters related posters...kind

of

> > like spam or something. is that what is happening? i wasn't sure

which

> > posts were legit or what. do we have another site i don't know

about

> > where this isn't happening? no big deal, just wondering. thanks.

trudy.

> >

> >

> >

> >

> >

[Guest guest]

Hi, I too read the messages in this group and find them a source of information and comfort. I am just going through the process of aspirin desensitization for the first time (it has taken me years to build up courage to do this, but I am taking steriods and antibiotics constantly which can't go on for ever) and am finding aspects of it quite tough. I live in England and found an expert, called Dr S Nasser, on Samters in Cambridge (4 hours drive to the other side of Britain for me). I arranged an appointment and saw him in January. He took my long Samters medical history, adjusted my meds a little and asked me to come back in 3 months. So I did. I think this clinic in Addenbrokes Hospital is the only (or maybe one of very few) in Britain which do asa desens, and they only do about 6 a year, so it's not a common thing to do here. The clinic mainly deals with wasp

and bee sting or food allergies. I was booked in for 3 consecutive Tuesdays for the treatmant. 2 Tuesdays ago I went, had loads of lung funcion tests and was given 30mg (1 tenth of an adult) aspirin. I did not react. 2 hours later I was given 60mg and 30minutes later I started to get a prickly sore throat which tightened quickly, and asthmatic cough and the lining of my sinuses, nose and ears swelled right up so it was very painful. My eyes were itchy and streeming. This didn't subside but steadily became worse. I was nebulised almost immediately and monitored closely for the next few hours. I didn't get much better, so Dr Euan decided that was enough for me that day and gave me 25mg steroids. I was kept in for a further few hours until they were sure I had fully recovered. The most frightening thing was my throat swelling up as I'd not had that before. So they sent me home at the end of the day and told me to give myself

60mg aspirin after breakfast, the first few days with steroids. Every day I became less sympomatic. last Tuesday (2 days ago) I returned and the took lung function tests again as a baseline. Dr Euan gave me a whopping 150mg (only half an aspirin, but it was a big step up). I had already taken 60mg at breakfast that morning. Their aim was to get me up to 300mg (1 aspirin) a day. I reacted badly again after 1/2 hour. This time my asthma was affected badly and the medical staff rushed around getting the nebuliser and steroids again. It took most of the rest of the day to get me back on track.. I couldn't get above the 150mg, so am on that everyday now and time will tell if it works for me. My consultant has high hopes it will as I am so sensitive to it, but am improving every day. I can't go back next Tuesday as my husband can't take any more time off work and the kids are back to school after the Easter hols. So I will have a follow

up appointment in a few weeks or months, when I can get back there. I think this slow way of desensitising is different form the way in America (Scripps? Is that right?) as they seem to desens up to high doses over a period of a few days. The staff were amazing and my treatment excellent, especially as it was all done in the outpatients department of an NHS hospital. The names of the Consultants were Dr S Nasser and Dr P Euan. I have to say that going through this was a surreal experience and I didn't panic as I knew everyone was caring for me. I really do not think this is one to do at home because when the symptoms come on, they're quick and can continue to get worse for hours. Also, everyone is slightly different in their response to aspirin. I had no idea what I would be like until it happened - I even doubted I was actually allergic to aspirin!! Other side effects at the

moment include exhaustion and an awareness that my body is trying to do an amazing thing coping with this *poison*. But I am already beginning to tolerate the 150mg. I hope this has been of some use/interest to people, especially those in the UK, or for those who want to compare this way of desensitising to the way in America. Regards, Becky xbpetersen1047 <bpetersen1047@...> wrote: I agree the samter group is a good group, but I basically quite responding

to the group after getting the feeling people were using it for home based remedies and not through a doctor. Which isn't safe at all. Basically I was concerned when people were trying to desensitizing themselfs and to me that is only flirting with trouble. It is a great site for information, but I am get a little concerned with self treaters giving advice or doing the self treating. My thoughts only, nothing said here is met for debate or as an insult. Just plainly my thoughts.>> This is a great group. I think my allergist was shocked when I first paid him a visit several years ago and gave him my self diagnois. I was right on target. > > > what happened to the group?> > > > hey all. hope everyone is well. i was gone for quite a long time

from> > the group and finally have access to a computer again. i have noticed> > there are a lot of posts from non-samters related posters...kind of> > like spam or something. is that what is happening? i wasn't sure which> > posts were legit or what. do we have another site i don't know about> > where this isn't happening? no big deal, just wondering. thanks. trudy.> > > > > > > > > >

[Guest guest]

I have been removing spam and banning the spam account a

posteriori. If it gets bad enough we should consider what I have done

on other lists -- making subscribers apply and then denying subscription

if it is obvious they are spammers -- for example, many

have been invaded by spammers with a bogus email address that ends in

" .info. " There is a price to pay for subscription only by request --

the moderators have to approve or reject every subscription request.

Cheers,

Karl W.

what happened to the group?

hey all. hope everyone is well. i was gone for quite a long time from

the group and finally have access to a computer again. i have noticed

there are a lot of posts from non-samters related posters...kind of

like spam or something. is that what is happening? i wasn't sure which

posts were legit or what. do we have another site i don't know about

where this isn't happening? no big deal, just wondering. thanks. trudy.

[Guest guest]

I am on other lists dealing with health issues that are asking the same questions. Usually, the English is poorly phrased, as well.

Sheila

--mail to: sheilafitzpg@...

--------- what happened to the group? > > hey all. hope everyone is well. i was gone for quite a long time from > the group and finally have access to a computer again. i have noticed > there are a lot of posts from non-samters related posters...kind of > like spam or something. is that what is happening? i wasn't sure which > posts were legit or what. do we have another site i don't know about > where this isn't happening? no big deal, just wondering. thanks. trudy. > > > > >

[Guest guest]

Thanks Liz, that's good to know a time scale! I'm feeling ok today already, but I am still on steroids which mask the effects somewhat. Tomorrow I'll only be taking 5mg prednisolone and hopefully none the day after. I'm just getting a few sinus headaches and feel a bit snotty and have quite a productive cough, but don't feel systemmically ill today, for the first time. Maybe I'm having a good day ;-) Becky xRobin Deleuze <triadinfo06@...> wrote: , Good luck with your Desens! I hope it helps you. It was huge for me. I was desensitized right after surgery which was also really helpful. Give it a couple of months. It took about 6 weeks on aspirin before I started seeing results. Liz Bannister <beckyb256 (DOT) co.uk> wrote: Hi, I too read the messages in this group and find them a source of information and comfort. I am just going through the process of aspirin desensitization for the first time (it has taken me years to build up courage to do this, but I am taking steriods and antibiotics constantly which can't go on for ever) and am finding aspects of it quite tough. I live in England and found an expert, called Dr S Nasser,

on Samters in Cambridge (4 hours drive to the other side of Britain for me). I arranged an appointment and saw him in January. He took my long Samters medical history, adjusted my meds a little and asked me to come back in 3 months. So I did. I think this clinic in Addenbrokes Hospital is the only (or maybe one of very few) in Britain which do asa desens, and they only do about 6 a year, so it's not a common thing to do here. The clinic mainly deals with wasp and bee sting or food allergies. I was booked in for 3 consecutive Tuesdays for the treatmant. 2 Tuesdays ago I went, had loads of lung funcion tests and was given 30mg (1 tenth of an adult) aspirin. I did not react. 2 hours later I was given 60mg and 30minutes later I started to get a prickly sore throat which tightened quickly, and asthmatic cough and the lining of my sinuses, nose and ears swelled right up so it was very painful. My eyes were itchy and streeming. This

didn't subside but steadily became worse. I was nebulised almost immediately and monitored closely for the next few hours. I didn't get much better, so Dr Euan decided that was enough for me that day and gave me 25mg steroids. I was kept in for a further few hours until they were sure I had fully recovered. The most frightening thing was my throat swelling up as I'd not had that before. So they sent me home at the end of the day and told me to give myself 60mg aspirin after breakfast, the first few days with steroids. Every day I became less sympomatic. last Tuesday (2 days ago) I returned and the took lung function tests again as a baseline. Dr Euan gave me a whopping 150mg (only half an aspirin, but it was a big step up). I had already taken 60mg at breakfast that morning. Their aim was to get me up to 300mg (1 aspirin) a day. I reacted badly again after 1/2 hour. This time my asthma was

affected badly and the medical staff rushed around getting the nebuliser and steroids again. It took most of the rest of the day to get me back on track.. I couldn't get above the 150mg, so am on that everyday now and time will tell if it works for me. My consultant has high hopes it will as I am so sensitive to it, but am improving every day. I can't go back next Tuesday as my husband can't take any more time off work and the kids are back to school after the Easter hols. So I will have a follow up appointment in a few weeks or months, when I can get back there. I think this slow way of desensitising is different form the way in America (Scripps? Is that right?) as they seem to desens up to high doses over a period of a few days. The staff were amazing and my treatment excellent, especially as it was all done in the outpatients department of an NHS hospital. The names of the Consultants were Dr S Nasser and Dr

P Euan. I have to say that going through this was a surreal experience and I didn't panic as I knew everyone was caring for me. I really do not think this is one to do at home because when the symptoms come on, they're quick and can continue to get worse for hours. Also, everyone is slightly different in their response to aspirin. I had no idea what I would be like until it happened - I even doubted I was actually allergic to aspirin!! Other side effects at the moment include exhaustion and an awareness that my body is trying to do an amazing thing coping with this *poison*. But I am already beginning to tolerate the 150mg. I hope this has been of some use/interest to people, especially those in the UK, or for those who want to compare this way of desensitising to the way in America. Regards, Becky xbpetersen1047 <bpetersen1047 > wrote: I agree the samter group is a good group, but I basically quite responding to the group after getting the feeling people were using it for home based remedies and not through a doctor. Which isn't safe at all. Basically I was concerned when people were trying to desensitizing themselfs and to me that is only flirting with trouble. It is a great site for information, but I am get a little concerned with self treaters giving advice or doing the self treating. My thoughts only, nothing said here is met for debate or as an insult. Just plainly my thoughts.>> This is a great group. I think my allergist was shocked when I first paid him a visit several years ago and gave him my self diagnois. I was right

on target. > > > what happened to the group?> > > > hey all. hope everyone is well. i was gone for quite a long time from> > the group and finally have access to a computer again. i have noticed> > there are a lot of posts from non-samters related posters...kind of> > like spam or something. is that what is happening? i wasn't sure which> > posts were legit or what. do we have another site i don't know about> > where this isn't happening? no big deal, just wondering. thanks. trudy.> > > > > > > > > >

[Guest guest]

Hello everyone, I am gald someone mentioned about what happened to the

group because we don't need to have people leave because they got mad at

something that don't even deal with epilesy. We need has many people

that what to join has possible because the more people the more

information we will get about epilesy and different ways to stop or

control them. And we need to have people that are going thru the same

thing so we can be here to support one another. Dee-Dee