Re: New Member doing research on diagnosis

Posted December 17, 2002 · December 17, 2002

:

I am a patient at UCSF and they are great! My achalasia became severe quite

quickly. I started with some minimal swallowing problems in August 2001,

right after my father passed away, so I attributed it to stress. It became

progressively worse until January 2002 when I got bronchitis, at which point

it went downhill fast. I also suspected problems with GERD. Fortunately, I

saw Dr. Ostroff at UCSF in March 2002. He did an endoscopy and suspected

achalasia right away. I had the esophagram, where you swallow the barium,

and also the manometry. The manometry takes about 1 1/2 hours and you lie on

your side with a tube up your nose and down your throat. They put about 10cc

of water in your mouth at a time and have you swallow on cue. The machine

measures what happens to it, I guess. I then had a 24 hour ph test, where

you have a different tube up your nose and wear a monitor for 24 hours. You

return the next day to have it removed. So, after these three tests and

about 6 weeks, I met with Dr. Ostroff, who confirmed that I had achalasia at

the end of April 2002. I saw the surgeon, Dr. Marco Patti, the first week of

May, and we scheduled a myotomy for June 7. Coincidentally, I was having bad

abdominal pain when I saw Dr. Patti, and I ended up having to have emergency

gall bladder surgery on May 10 at Muir. The gall bladder got diseased

from the rapid weight loss (the only good thing that came out of this!) I

got pneumonia during the surgery when fluid from my esophagus got into my

lungs. By the end of May nothing, including my own saliva, was getting into

my stomach, so I had daily IV transfusions at Muir. On June 7 I had the

myotomy, and though I was pretty nauseous the first week (probably mostly

from the malnutrition and dehydration), I was able to swallow like a normal

human being! And I still am! It has been a gift from above, that is for

sure, and the best present I could have received. I'm 39 years old, and

faced with this for the rest of my life, the surgery was the best

alternative for me. I wish you all the best, and you are in really good

hands!

>From: " foxperkos <heather@...> " <heather@...>

>Reply-achalasia

>achalasia

>Subject: New Member doing research on diagnosis

>Date: Tue, 17 Dec 2002 19:43:38 -0000

>

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Hello! I am a new member, in the process of a firm diagnosis of

Achalasia. If anyone has found good publications on Achalasia -

causes, symptoms, treatments, medications, etc., please let me know

where to find them!

My story: I am a 30 year old woman from California, I have been

struggling with diffuculty swallowing for over a year and a half.

Original diagnosis was that I had severe GERD which had irritated my

esophogus and I needed to stop the reflux and give the esophogus a

chance to heal. I have spent the last 18 months on various diets and

medications switching from Zantac to Aciphex to Nexium....still

getting what seemed to be reflux several times a day. My difficulty

swallowing has gone from once a week to once a day to literally every

bite - now I can only eat thin soup...and have occational diffuculty

with liquids! I sleep with no less than 4 pillows and can only sleep

on my back.

Finally, after switching doctors twice, I was referred to a GI

doctor, got an endoscopy and esophogram and my doctor is fairly sure

it is Achalasia. When I look at the symptoms it sure seems to be what

it is. I go for the ph test and Manometry this Thursday and hopefully

that will confirm a diagnosis. These tests will be done at

UCSF....any input on UCSF?

Has anyone had a similar story? It sounds like this just keeps

progressing? Can anyone tell me how uncomfortable the manometry test

is? Any stories, suggestions or references would be greatly

appreciated.

All the best to everyone!

Posted December 17, 2002 · December 17, 2002

–

Thank you so much for writing to me! It

kind of sounds like I am on the same path you have taken….I guess the

first time I saw a doctor was around June 2001. I have been being treated for

reflux until about a month ago when I finally got referred to a GI doctor here

in Santa Cruz. (Where do you live?)

I had the endoscopy 2 weeks ago and the esophogram

last Tuesday, from these two tests he is pretty certain it is Achalasia. I go

on Thursday to UCSF for the ph and manometry. I have had so much anxiety about

these tests as it was, then last Friday my doctor told me about Achalasia and

I’ve been trying to learn a little more about it….now I have a lot

of anxiety.

I cant believe how quickly this

progressed for you…it seems that this progresses for no rhyme or reason

and only gets steadily worse. My doctor said I have the early stages, which

blows me away as I can only eat soup! It has gotten really bad over the last 2

months. I have really been pushing the doctors to get appointments for all of

these tests ASAP but I know that there is still a path to follow before I get

some relief. At 30, I really am struggling with the fact that this is

something that I will live with forever. I am so glad to hear that your surgery

worked well for you….also very happy to hear the good words about UCSF

(my doctor speaks highly of them).

Thank you so much writing me, it really

helps to hear other stories and how other people are coping with this and what

type of treatments have worked well.

All the best and thank you so much!

New Member doing research

on diagnosis

>Date: Tue, 17 Dec 2002 19:43:38 -0000

>

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Posted December 17, 2002 · December 17, 2002

Hi ,

Welcome to the group. I also am from the bay area. I live in

Brentwood. I haven't seen the Dr's at UCSF but have heard good

things about them from reading the past posts.I've had achalasia for

7 years. The first 2 years were the worst for me, then I discovered

techniques for swallowing that worked well for me. Warm tea always

relaxed my esophagus and allowed the food to go through.I put off

seeing a GI doctor for so long because I was living reasonably well

wit my achalasia and also because I was afraid of having an

endoscopy The endoscopy turned out to be a breeze. I slept almost

through the entire procedure because I was so sedated (I woke up for

a brief second and then I was out again).I then went home and slept

all day.

I had my manometry and surgery done at Mt. Diablo Medical Center

in Concord.The first manometry I had wasn't too bad, it made me gag

a little going down the back of my throat but from then on it was

o.k. My Dr. wasn't satisfied with the results of the first test so I

had to have it done a second time.

Second time around was a little more difficult because I was

congested and it was more difficult getting the tube down. We

finally tried it standing up while taking sips of warm water which

always works on me to relax the lower esophagal sphincter(LES).

Standing up proved to be more successful for me than laying on my

side. I did throw up alot of water but my technician was very

understanding and didn't make me feel bad at all.

I can't tell you anything about the ph test as I never had it done.

I had the lap surgery in May of 2002 and I feel wonderful. It's the

best decision I've ever made. My surgeon is truly an artist. I have

the masterpiece to prove it.

It would be a good idea to go through and read the past postings.

There's alot of very interesting posts and a wealth of information

that will help you in making an informed decision as to your

options. I wish that I had known about this group at the time I was

making the " big " decision. I really didn't know if I was making the

right choice. Obviously, I now know that I did.

....and , did you have your surgery at Muir in Concord?

Or is there also a Muir in San Francisco? (I also am wondering

where you live)

Good luck on your test's on Thursday and let us know how it goes.

Sandi in No California

--

- In achalasia , " " <heather@g...> wrote:

> –

>

> Thank you so much for writing to me! It kind of sounds like I am

on the

> same path you have taken….I guess the first time I saw a doctor was

> around June 2001. I have been being treated for reflux until about

a

> month ago when I finally got referred to a GI doctor here in Santa

Cruz.

> (Where do you live?)

>

> I had the endoscopy 2 weeks ago and the esophogram last Tuesday,

from

> these two tests he is pretty certain it is Achalasia. I go on

Thursday

> to UCSF for the ph and manometry. I have had so much anxiety about

these

> tests as it was, then last Friday my doctor told me about

Achalasia and

> I've been trying to learn a little more about it….now I have a lot

of

> anxiety.

>

> I cant believe how quickly this progressed for you…it seems that

this

> progresses for no rhyme or reason and only gets steadily worse. My

> doctor said I have the early stages, which blows me away as I can

only

> eat soup! It has gotten really bad over the last 2 months. I have

really

> been pushing the doctors to get appointments for all of these

tests ASAP

> but I know that there is still a path to follow before I get some

> relief. At 30, I really am struggling with the fact that this is

> something that I will live with forever. I am so glad to hear that

your

> surgery worked well for you….also very happy to hear the good words

> about UCSF (my doctor speaks highly of them).

>

> Thank you so much writing me, it really helps to hear other

stories and

> how other people are coping with this and what type of treatments

have

> worked well.

>

> All the best and thank you so much!

>

> New Member doing research on diagnosis

> >Date: Tue, 17 Dec 2002 19:43:38 -0000

> >

>

> _________________________________________________________________

> Tired of spam? Get advanced junk mail protection with MSN 8.

> http://join.msn.com/?page=features/junkmail

>

Posted December 18, 2002 · December 18, 2002

Sandi:

I had the myotomy at UCSF, since it was a planned surgery. The surgery I had

at Muir was the emergency gall bladder removal. I live in El Sobrante,

which is closer to Muir in Walnut Creek. Muir doesn't have anyone

who specializes in swallowing disorders like Dr. Patti does at UCSF. I feel

like I'm taking the tour of the Bay Area hospitals!

>From: " sholtsmith <holt-smith@...> " <holt-smith@...>

>Reply-achalasia

>achalasia

>Subject: Re: New Member doing research on diagnosis

>Date: Wed, 18 Dec 2002 06:08:44 -0000

>

_________________________________________________________________

MSN 8 with e-mail virus protection service: 2 months FREE*

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Hi ,

Welcome to the group. I also am from the bay area. I live in

Brentwood. I haven't seen the Dr's at UCSF but have heard good

things about them from reading the past posts.I've had achalasia for

7 years. The first 2 years were the worst for me, then I discovered

techniques for swallowing that worked well for me. Warm tea always

relaxed my esophagus and allowed the food to go through.I put off

seeing a GI doctor for so long because I was living reasonably well

wit my achalasia and also because I was afraid of having an

endoscopy The endoscopy turned out to be a breeze. I slept almost

through the entire procedure because I was so sedated (I woke up for

a brief second and then I was out again).I then went home and slept

all day.

I had my manometry and surgery done at Mt. Diablo Medical Center

in Concord.The first manometry I had wasn't too bad, it made me gag

a little going down the back of my throat but from then on it was

o.k. My Dr. wasn't satisfied with the results of the first test so I

had to have it done a second time.

Second time around was a little more difficult because I was

congested and it was more difficult getting the tube down. We

finally tried it standing up while taking sips of warm water which

always works on me to relax the lower esophagal sphincter(LES).

Standing up proved to be more successful for me than laying on my

side. I did throw up alot of water but my technician was very

understanding and didn't make me feel bad at all.

I can't tell you anything about the ph test as I never had it done.

I had the lap surgery in May of 2002 and I feel wonderful. It's the

best decision I've ever made. My surgeon is truly an artist. I have

the masterpiece to prove it.

It would be a good idea to go through and read the past postings.

There's alot of very interesting posts and a wealth of information

that will help you in making an informed decision as to your

options. I wish that I had known about this group at the time I was

making the " big " decision. I really didn't know if I was making the

right choice. Obviously, I now know that I did.

....and , did you have your surgery at Muir in Concord?

Or is there also a Muir in San Francisco? (I also am wondering

where you live)

Good luck on your test's on Thursday and let us know how it goes.

Sandi in No California

--

- In achalasia , " " <heather@g...> wrote:

> –

>

> Thank you so much for writing to me! It kind of sounds like I am

on the

> same path you have taken….I guess the first time I saw a doctor was

> around June 2001. I have been being treated for reflux until about

a

> month ago when I finally got referred to a GI doctor here in Santa

Cruz.

> (Where do you live?)

>

> I had the endoscopy 2 weeks ago and the esophogram last Tuesday,

from

> these two tests he is pretty certain it is Achalasia. I go on

Thursday

> to UCSF for the ph and manometry. I have had so much anxiety about

these

> tests as it was, then last Friday my doctor told me about

Achalasia and

> I've been trying to learn a little more about it….now I have a lot

of

> anxiety.

>

> I cant believe how quickly this progressed for you…it seems that

this

> progresses for no rhyme or reason and only gets steadily worse. My

> doctor said I have the early stages, which blows me away as I can

only

> eat soup! It has gotten really bad over the last 2 months. I have

really

> been pushing the doctors to get appointments for all of these

tests ASAP

> but I know that there is still a path to follow before I get some

> relief. At 30, I really am struggling with the fact that this is

> something that I will live with forever. I am so glad to hear that

your

> surgery worked well for you….also very happy to hear the good words

> about UCSF (my doctor speaks highly of them).

>

> Thank you so much writing me, it really helps to hear other

stories and

> how other people are coping with this and what type of treatments

have

> worked well.

>

> All the best and thank you so much!

>

> New Member doing research on diagnosis

> >Date: Tue, 17 Dec 2002 19:43:38 -0000

> >

>

> _________________________________________________________________

> Tired of spam? Get advanced junk mail protection with MSN 8.

> http://join.msn.com/?page=features/junkmail

>

Posted December 18, 2002 · December 18, 2002

Hi ,

I'm happy to hear your surgery was also a success. Isn't it

wonderful to be able to eat normally again? (well almost for me) I

still have to drink a few sips of water after every bite or two.

I have a friend in Sausalito who also has Achalasia and has

been looking for Dr.'s in San Francisco. I will be sure to let her

know how highly you speak of Dr. Patti and Dr. Ostroff.

What does your Dr. suggest that you do next? Does he recommend

that you have routine endoscopy's or barium swallows? I was just

wondering as I have not seen my GI doctor yet since having surgery

in May. I will be seeing him the first part of the year.

and , I should also point out that I was only standing while

we were getting the tube down. For the actual test I was laying down.

Good luck tommorrow!

Sandi in No CA

-

-- In achalasia , " STEPHANIE CRAWFORD "

<franksplace10@m...> wrote:

> :

>

> I am a patient at UCSF and they are great! My achalasia became

severe quite

> quickly. I started with some minimal swallowing problems in August

2001,

> right after my father passed away, so I attributed it to stress.

It became

> progressively worse until January 2002 when I got bronchitis, at

which point

> it went downhill fast. I also suspected problems with GERD.

Fortunately, I

> saw Dr. Ostroff at UCSF in March 2002. He did an endoscopy and

suspected

> achalasia right away. I had the esophagram, where you swallow the

barium,

> and also the manometry. The manometry takes about 1 1/2 hours and

you lie on

> your side with a tube up your nose and down your throat. They put

about 10cc

> of water in your mouth at a time and have you swallow on cue. The

machine

> measures what happens to it, I guess. I then had a 24 hour ph

test, where

> you have a different tube up your nose and wear a monitor for 24

hours. You

> return the next day to have it removed. So, after these three

tests and

> about 6 weeks, I met with Dr. Ostroff, who confirmed that I had

achalasia at

> the end of April 2002. I saw the surgeon, Dr. Marco Patti, the

first week of

> May, and we scheduled a myotomy for June 7. Coincidentally, I was

having bad

> abdominal pain when I saw Dr. Patti, and I ended up having to have

emergency

> gall bladder surgery on May 10 at Muir. The gall bladder got

diseased

> from the rapid weight loss (the only good thing that came out of

this!) I

> got pneumonia during the surgery when fluid from my esophagus got

into my

> lungs. By the end of May nothing, including my own saliva, was

getting into

> my stomach, so I had daily IV transfusions at Muir. On June 7

I had the

> myotomy, and though I was pretty nauseous the first week (probably

mostly

> from the malnutrition and dehydration), I was able to swallow like

a normal

> human being! And I still am! It has been a gift from above, that

is for

> sure, and the best present I could have received. I'm 39 years

old, and

> faced with this for the rest of my life, the surgery was the best

> alternative for me. I wish you all the best, and you are in really

good

> hands!

>

> >From: " foxperkos <heather@g...> " <heather@g...>

> >Reply-achalasia

> >achalasia

> >Subject: New Member doing research on diagnosis

> >Date: Tue, 17 Dec 2002 19:43:38 -0000

> >

>

> _________________________________________________________________

> Tired of spam? Get advanced junk mail protection with MSN 8.

> http://join.msn.com/?page=features/junkmail

Posted December 19, 2002 · December 19, 2002

Sandi:

I actually was supposed to see him a couple of months ago, but (shame on me)

I haven't seen him yet. But I'm glad you have reminded me. I don't know if

he'll do an esophagram or anything, I suppose it depends on whether I have

any complaints or not. Which I don't!

I have to drink after every couple of bites, too, but that is not a problem

- the waiters just look at me funny when I need my water glass filled a

couple of times. But it's still joyous!

I love Sausalito. I live about 20 minutes north of Berkeley off Highway 80.

Brentwood is past Oakley off Highway 4, isn't it?

And tell your friend, as an added bonus at UCSF, a lot of the residents and

technicians are really cute. I refer to one of them as Dr. Handsome, because

I never could remember his name.

>From: " sholtsmith <holt-smith@...> " <holt-smith@...>

>Reply-achalasia

>achalasia

>Subject: Re: New Member doing research on diagnosis

>Date: Thu, 19 Dec 2002 05:56:53 -0000

>

_________________________________________________________________

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Hi ,

I'm happy to hear your surgery was also a success. Isn't it

wonderful to be able to eat normally again? (well almost for me) I

still have to drink a few sips of water after every bite or two.

I have a friend in Sausalito who also has Achalasia and has

been looking for Dr.'s in San Francisco. I will be sure to let her

know how highly you speak of Dr. Patti and Dr. Ostroff.

What does your Dr. suggest that you do next? Does he recommend

that you have routine endoscopy's or barium swallows? I was just

wondering as I have not seen my GI doctor yet since having surgery

in May. I will be seeing him the first part of the year.

and , I should also point out that I was only standing while

we were getting the tube down. For the actual test I was laying down.

Good luck tommorrow!

Sandi in No CA

-

-- In achalasia , " STEPHANIE CRAWFORD "

<franksplace10@m...> wrote:

> :

>

> I am a patient at UCSF and they are great! My achalasia became

severe quite

> quickly. I started with some minimal swallowing problems in August

2001,

> right after my father passed away, so I attributed it to stress.

It became

> progressively worse until January 2002 when I got bronchitis, at

which point

> it went downhill fast. I also suspected problems with GERD.

Fortunately, I

> saw Dr. Ostroff at UCSF in March 2002. He did an endoscopy and

suspected

> achalasia right away. I had the esophagram, where you swallow the

barium,

> and also the manometry. The manometry takes about 1 1/2 hours and

you lie on

> your side with a tube up your nose and down your throat. They put

about 10cc

> of water in your mouth at a time and have you swallow on cue. The

machine

> measures what happens to it, I guess. I then had a 24 hour ph

test, where

> you have a different tube up your nose and wear a monitor for 24

hours. You

> return the next day to have it removed. So, after these three

tests and

> about 6 weeks, I met with Dr. Ostroff, who confirmed that I had

achalasia at

> the end of April 2002. I saw the surgeon, Dr. Marco Patti, the

first week of

> May, and we scheduled a myotomy for June 7. Coincidentally, I was

having bad

> abdominal pain when I saw Dr. Patti, and I ended up having to have

emergency

> gall bladder surgery on May 10 at Muir. The gall bladder got

diseased

> from the rapid weight loss (the only good thing that came out of

this!) I

> got pneumonia during the surgery when fluid from my esophagus got

into my

> lungs. By the end of May nothing, including my own saliva, was

getting into

> my stomach, so I had daily IV transfusions at Muir. On June 7

I had the

> myotomy, and though I was pretty nauseous the first week (probably

mostly

> from the malnutrition and dehydration), I was able to swallow like

a normal

> human being! And I still am! It has been a gift from above, that

is for

> sure, and the best present I could have received. I'm 39 years

old, and

> faced with this for the rest of my life, the surgery was the best

> alternative for me. I wish you all the best, and you are in really

good

> hands!

>

> >From: " foxperkos <heather@g...> " <heather@g...>

> >Reply-achalasia

> >achalasia

> >Subject: New Member doing research on diagnosis

> >Date: Tue, 17 Dec 2002 19:43:38 -0000

> >

>

> _________________________________________________________________

> Tired of spam? Get advanced junk mail protection with MSN 8.

> http://join.msn.com/?page=features/junkmail

Posted December 19, 2002 · December 19, 2002

Hello! Well I had my first (and I hope last) mamometry test done

today at UCSF and am at home with the ph monitor. I found everyone at

UCSF to be great....but I hated every minute of the test! The

mamometry was actually okay once the tube was in place and I lied

down. But when they took that tube out and put the other tube in for

the ph, they had to take the tube out no less than 6 times because it

kept getting turned around in my esophogus and they couldnt get it

into my stomach. After 2 X-rays, they finally got it into place. It

hurts with every swallow because my nose is so sore (I think from the

tube going in and out so many times). I know that my journey with

this has just started...I saw the film from my esophogram and it

looks like the photos I've seen online of achalasia...tapering to a

little pin hole. The only thing she would tell me today is that the

esophogeal function is definitely abnormal.

Well, back tomorrow morning to get this thing out....counting down

the hours! I have to tell everyone how great it has been to hear your

stories and to feel the genuine understanding and compassion on each

posting. Thank you all and best of luck to everyone!

....in Santa Cruz, CA

> > :

> >

> > I am a patient at UCSF and they are great! My achalasia became

> severe quite

> > quickly. I started with some minimal swallowing problems in

August

> 2001,

> > right after my father passed away, so I attributed it to stress.

> It became

> > progressively worse until January 2002 when I got bronchitis, at

> which point

> > it went downhill fast. I also suspected problems with GERD.

> Fortunately, I

> > saw Dr. Ostroff at UCSF in March 2002. He did an endoscopy and

> suspected

> > achalasia right away. I had the esophagram, where you swallow the

> barium,

> > and also the manometry. The manometry takes about 1 1/2 hours and

> you lie on

> > your side with a tube up your nose and down your throat. They put

> about 10cc

> > of water in your mouth at a time and have you swallow on cue. The

> machine

> > measures what happens to it, I guess. I then had a 24 hour ph

> test, where

> > you have a different tube up your nose and wear a monitor for 24

> hours. You

> > return the next day to have it removed. So, after these three

> tests and

> > about 6 weeks, I met with Dr. Ostroff, who confirmed that I had

> achalasia at

> > the end of April 2002. I saw the surgeon, Dr. Marco Patti, the

> first week of

> > May, and we scheduled a myotomy for June 7. Coincidentally, I was

> having bad

> > abdominal pain when I saw Dr. Patti, and I ended up having to

have

> emergency

> > gall bladder surgery on May 10 at Muir. The gall bladder got

> diseased

> > from the rapid weight loss (the only good thing that came out of

> this!) I

> > got pneumonia during the surgery when fluid from my esophagus got

> into my

> > lungs. By the end of May nothing, including my own saliva, was

> getting into

> > my stomach, so I had daily IV transfusions at Muir. On June

7

> I had the

> > myotomy, and though I was pretty nauseous the first week

(probably

> mostly

> > from the malnutrition and dehydration), I was able to swallow

like

> a normal

> > human being! And I still am! It has been a gift from above, that

> is for

> > sure, and the best present I could have received. I'm 39 years

> old, and

> > faced with this for the rest of my life, the surgery was the best

> > alternative for me. I wish you all the best, and you are in

really

> good

> > hands!

> >

> > >From: " foxperkos <heather@g...> " <heather@g...>

> > >Reply-achalasia

> > >achalasia

> > >Subject: New Member doing research on diagnosis

> > >Date: Tue, 17 Dec 2002 19:43:38 -0000

> > >

> >

> > _________________________________________________________________

> > Tired of spam? Get advanced junk mail protection with MSN 8.

> > http://join.msn.com/?page=features/junkmail

Posted December 19, 2002 · December 19, 2002

:

Yeah, it's some fun, isn't it? After they removed the first tube and started

to insert the second tube, I regurgitated all the water they'd given me. I

guess that qualifies as abnormal! It was so embarrassing, especially because

the doc doing the test was such a cutie!

And the ph monitor tube coming out the nose is very attractive. I actually

rode Muni and BART like that. Fortunately, my husband went with me, so I

didn't have to be embarrassed all by myself. Not that anyone really looked

because there are a lot stranger sights in San Francisco.

Crossing my fingers that the night goes fast for you--

>From: " foxperkos <perkoconstruction@...> " <perkoconstruction@...>

>Reply-achalasia

>achalasia

>Subject: Re: New Member doing research on diagnosis

>Date: Thu, 19 Dec 2002 22:45:37 -0000

>

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