(no subject)

[Guest guest]

I mean taking it as per the the instructions on the box ==one or thwice I

have taken two dose in one day

> (no subject)

>

> From: rhbailey@...

>

> Steve wrote:I have been experimenting with immunocal for about three

> weeks. I do not find that it has been helpful -- at all.

>

> Steve, what do you mean by experimenting? Have you been taking varying

> amounts?

>

> Sue B.

>

>

>

> ------------------------------------------------------------------------

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> This list is intended for patients to share personal experiences with each

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> discussed here, please consult your doctor.

[Guest guest]

Thanks ,

I appreciate you sharing all of that. you have been on a rollacoster ride

with this and for a long time. Sure hope all of us can find what works for

us. And I would especially like for the medical world to get a grip and see

what can be done. Seems they have their head stuck where the sun doesn't

shine. There are so many of us now and the numbers grow each day. soon we

will be too much to reckon with.

Thanks again,

Judi

(no subject)

>From: " G. McFadden " <nmcfadden@...>

>

>judy h. asked what i took, when i mentioned the whey.

>====================================

>

>judy, first, YOU NEED TO READ ON THE WHEY AND MAKE

>SURE YOU GET WHEY PROTEIN THAT IS PRODUCED UNDER THE

>SAME PROTOCOL AS THE IMMUNOCAL. the other stuff does

>not help your immune system... be very very careful.

>a flippant, " any whey will do, " will not help.

>

>i carefully researched the lef product, and i am still

>going to do a quality control cross-research by taking

>the lef product for one month and talking to them very

>carefully about their production protocol. if their answers

>aren't good enough for me, i will try immunocal for a

>month in the middle to see if there is a physiological

>difference between the two. OK? know what you are doing!!!

>============================

>

>this disease really sucks. our brains are mixed up and

>we have to be smarter than just about everyone else with

>a chronic illness - because most doctors are not aware

>of the research..... so i exhort you, judy to be careful

>and to use whatever brain power you have to be informed.

>if you wait for your doctor to get you well, you won't

>get there, you still need to understand this, even if

>you have a wonderful doctor. my best advice to you...

>=============================

>

>i have had cfids since 1987. luckily (?) for me, i had

>OBVIOUS respiratory problems, lots of green yuckky

>purulent snot - so i got a lot of antibiotics to fight

>the mycoplasma and other respiratory infections.

>

>because i had mycoplasma, i was denied a cfids diagnosis

>for the first few years, this was because everyone KNEW

>it was a mystery virus. i blame the powers that be at the

>CDC for messing this up. damn stephen strauss, may he rot

>in hell....(i have a big list...similar to osler's web)

>

>anyhow, this mycoplasma diagnosis was a blessing and a

>curse, denying me a cfids diagnosis, but also giving me

>antibiotics which may have meant that my cfids did not

>get as bad as some folks, given that i was on antibiotics

>that were appropriate for this illness for about half of

>each year. so in a sense, i was doing the mycoplasma and

>chlamydia protocol part way without anyone knowing it.

>

>also, they could not say i had NO ILLNESS. it was obvious

>to anyone who could see the green color of my snot. i have

>been treated nicely once i got to my angel doc. in 1990.

>and even those abused by others before i found her, they

>could not say " it was in my head " when they saw green snot.

>

>i also learned that i was chemically sensitive and that i

>had food allergies, and that yeasties took over easily.

>so we dealt with those things, which dragged me up a bit.

>

>therefore, i used nystatin powder in a buffered saline nose

>spray made with filtered water, and now we know that fought not

>only the yeast, but the chlamydia and mycoplasma in my sinuses.

>

>i have taken lots of pain relief over the years, including

>aspirin, anacin, ultram, tylenol 3 with codeine, and variations

>similar to it, and IMITREX for migraines. i figured out years

>ago that tylenol was dangerous for my liver and did not work as

>well. occasionally i take aleve at prescription doses, if

>i have muscle pain or a stiff neck.

>

>i also take 4 st. johns wort every day mostly as a migraine

>preventive, but i am sure it helps my mood and it has antiviral

>effects. this turned out to be better for me than the prozac or

>other prescription meds, it actually controlled the migraines a

>lot more, so i only have 2 or 3 a month rather than 10 - which

>was pretty bad before the st. john's wort and imitrex.

>

>i tried allergy shots - total hell, i reacted to preservatives, I felt

>like i had the worst case of the flu, all cfids symptoms exaggerated.

>i tried hismanal, it almost wiped me out, so i stopped it, and doctor

>agreed. - it turned out to work badly with ABX.

>

>i tried controlling my diet, that helped a lot, and now i do not eat

>wheat EVER and rarely eat corn, and there are lots of other little

>things i avoid, like eggplant, etc... i avoid gluten especially.

>

>i have been lucky in that i can take o.t.c. sleep meds, rotating them

>to work most of the time for sleep. usually unisom does the trick.

>

>depression - i only get depressed when i get treated like dirt by

>a specialist (this happened 3 weeks ago with inf. disease s.o.b.)

>or when i have lots of pain and the pain meds don't work perfectly.

>

>i think this is in part because my husband believes i am ill and is

>not mad that i am not making money. if my finances were worse, i would

>be bummed out.....a supportive spouse sure boosts the spirit.

>

>by 1992, i was relatively well. not well, but mediocre. it looked

>good for about 3 years here... if i exerted myself, i paid. if i

>got around pesticides I paid. but as long as i lived quietly,

>worked slowly, avoided toxins, i was relatively ok. i could

>keep up the house, volunteer 10-15 hours a week......

>

>then in 1995, i relapsed after a rollover car accident in virginia.

>no one was " hurt " but my immune system was back to 1987. then my

>dad died, and i had to spend 2 months moving my mom, sick as a dog.

>so by january 1996, when i had my mom in nashville with her home

>in chicago sold, i was back to where i was in 1987.

>

>so we had to start all over. i tested positive for chlamydia

>pneumoniae, and i have been on antibiotics for over 2 years now.

>if i stay on them, live a restricted life, avoid pesticides & toxins,

>avoid high stress, eat right, i am back to mediocre.

>

>however, we are hearing that folks are getting " better " in calif.

>not totally well, they still need meds, but SOME ARE BACK TO WORK.

>

>so i am determined that if folks are getting this in calif.

>I WANT IT. I want to be employable, if i choose to work.

>that is why i am on all these lists. i want to figure

>out what worked.....and will share what i know.

>

>antibiotics work, st. johns wort works, ambrotose works for me,

>soil based microorganisms (like yogurt except more) works because

>my g.i. tract was so screwed up from all the abx. vitamin c and

>antioxidants helps, otc sleep meds help.

>

>i also take an antifungal occasi. when yeasties get bad in mouth.

>(like thrush in folks with aids.) and nystatin is key forever.

>

>in addition, i take cromolyn sodium mixed in the buffered saline

>because it cuts down my mast cells releasing histamine, and

>i feel better and have less swollen glands when i do this.

>

>i am adding the whey, and more vitamins as my g.i. tract can

>stand them, all going very slowly....

>

>and IF my doctor and the researcher at vandy say the

>interferon may help me finally vanquish the chlam. and

>probably myco too, i might go on that....still need to

>look with them at the tests we got from immunosciences,

>which are supposed to all come in this week......

>

>this has been a big problem for nicholson and others with

>mycoplasma species and stratton at vanderbilt with chlamydia

>pneumoniae. many of us do better on the abx plus, and then

>we go off abx., and the monsters COME BACK. so i am trying

>to figure out if there is anything that might finally

>vanquish the intracellular microorganisms. it may be that

>the interferon will prime the immune system to fight these

>monsters off for good.

>

>also, i need to have tests run for which viruses are

>reactivated. and then go on antivirals.

>

>and i think hormonal levels need to be checked as well.

>

>i think that if the doctors can figure out all this stuff

>and do the right combination for each of us (not all the same)

>that some of us will get well, or damned close to it.

>

>but the list of what to consider is SO HUGE and most doctors

>are not looking at anything but a little part of it, so it

>will require us the sick ones to share with them to get to

>the bottom of this damned disease.

>

>nancy mcfadden

>

>

>

>------------------------------------------------------------------------

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discussed here, please consult your doctor.

>

[Guest guest]

Hi Jodi,

barometric changes are a big problem for me, too. Three days ago the weather

changed here and I had such NMH problems that even sitting was too demanding. As

for the pollens ...allergies seem to worsen my overall condition - more joint

pain, sore eyes, throat...

Stania

-----Pùvodní zpráva-----

Od: oobadooba <oobadooba@...>

Komu: onelist <onelist>

Datum: 18. dubna 1999 21:31

Pøedmìt: (no subject)

JUDI

BAROMETRIC CHANGES REALLY MAKE ME FEEL ALOT WORSE TOO. I CAN ALWAYS TELL

WHEN A STORM IS COMING....EVEN AS A CHILD. SINCE WE ARE 75 % WATER,I THOUGHT

THIS MAY MAKE A DIFFERENCE....IF THE MOON CAN CONTROL THE TIDE,CERTAINLY WE ARE

CONTROLLED BEING 75% WATER TOO? HOPE YOU FELL BETTER. MMY ALLERGIES ARE ALSO

YEAR ROUND. I LIVE IN MISSOURI AND I AM ALLERGIC TO ALL I WAS TESTED FOR. TRACY

[Guest guest]

I noticed that you felt that your symptoms increased with pollens. I also

find this to be the case. This winter I experience a significant recovery by

taking about 300 mg of Benadryl a day (in addition to 10mg of Claritin).

Have you ever tried high doses of antihistamines? It worked for me only

until the pollen increased and then it stopped working. But please keep in

mind I also take a lot of other stuff so I cannot be sure as to the true

cause of this partial recovery. If anyone has not tried high doses of

antihistamines you might want to give it a try. For some the drowsy symptoms

are reduced after about a week. Who knows?

Has anyone on this list gotten a significant recovery from moving to a low

pollen area?

thanks

Steve

> Re: (no subject)

>

> Hi Jodi,

> barometric changes are a big problem for me, too. Three days ago the

> weather changed here and I had such NMH problems that even sitting was too

> demanding. As for the pollens ...allergies seem to worsen my overall

> condition - more joint pain, sore eyes, throat...

> Stania

> -----Pùvodní zpráva-----

> Od: oobadooba < oobadooba@... <mailto:oobadooba@...>>

> Komu: onelist <mailto:onelist>

> < onelist <mailto:onelist>>

> Datum: 18. dubna 1999 21:31

> Pøedmìt: (no subject)

>

>

>

> JUDI

> BAROMETRIC CHANGES REALLY MAKE ME FEEL ALOT WORSE TOO. I CAN ALWAYS

> TELL WHEN A STORM IS COMING....EVEN AS A CHILD. SINCE WE ARE 75 %

> WATER,I THOUGHT THIS MAY MAKE A DIFFERENCE....IF THE MOON CAN CONTROL THE

> TIDE,CERTAINLY WE ARE CONTROLLED BEING 75% WATER TOO? HOPE YOU FELL

> BETTER. MMY ALLERGIES ARE ALSO YEAR ROUND. I LIVE IN MISSOURI AND I AM

> ALLERGIC TO ALL I WAS TESTED FOR. TRACY

>

[Guest guest]

Stania and ,

I was beginning to think it was just me. What said about our bodies being

75% water and the moon makes changes in the tides, why shouldn't we be able to

feel it too. Made sense to me. After such an awful day yesterday, I feel

really good to day. Didn't sleep too well last night, but since several night

before were good nights last night didn't bother me as much as I was afraid it

would. Even felt good enough to get up and get ready for church this morning.

By the time I got there I had broke out in a " cold sweat " . Had to take a little

time to cool down before going in and setting down. Then just standing and

singing a couple of songs I broke out into a " cold sweat " again. I just sat

while everyone else stood.

Was able to go out for lunch with my husband and son. Even stopped and looked

at a used motor home. So far it's been a great day. Hope I don't crash

tomorrow.

{{{{{{{{{hugs}}}}}}}

Judi

Re: (no subject)

Hi Jodi,

barometric changes are a big problem for me, too. Three days ago the weather

changed here and I had such NMH problems that even sitting was too demanding. As

for the pollens ...allergies seem to worsen my overall condition - more joint

pain, sore eyes, throat...

Stania

-----Pùvodní zpráva-----

Od: oobadooba <oobadooba@...>

Komu: onelist <onelist>

Datum: 18. dubna 1999 21:31

Pøedmìt: (no subject)

JUDI

BAROMETRIC CHANGES REALLY MAKE ME FEEL ALOT WORSE TOO. I CAN ALWAYS TELL

WHEN A STORM IS COMING....EVEN AS A CHILD. SINCE WE ARE 75 % WATER,I THOUGHT

THIS MAY MAKE A DIFFERENCE....IF THE MOON CAN CONTROL THE TIDE,CERTAINLY WE ARE

CONTROLLED BEING 75% WATER TOO? HOPE YOU FELL BETTER. MMY ALLERGIES ARE ALSO

YEAR ROUND. I LIVE IN MISSOURI AND I AM ALLERGIC TO ALL I WAS TESTED FOR. TRACY

[Guest guest]

But if you really believe in the GTH thing it would be so much cheaper to

get the shots (providing you give them to yourself) and take a little whey

protein on the side. Also do some research and find out how much inference

their is between immunocal and other whey products. I am sure you find that

there are many differences among these products.

At the cost of two packages a day -- that is between 120 and 200 bucks a

month-- I have strong doubts. That is all I am saying.

And by all means keep using it until you find a better value and if you have

lots of money do not pay any attention to what I am saying

LOL

Steve

> (no subject)

>

> From: " G. McFadden " <nmcfadden@...>

>

> steve, on immunocal and whey protein...

>

> YOU MUST GET A WHEY PROTEIN that is made in the same way as

> immunocal, where it is not at a high heat, and not denatured.

>

> the stuff from immunocal has special immune modulating processes

> that cheaper/protein oriented whey protein does not have -

> unless you check VERY CAREFULLY you will not get the glutathione

> effect that you want.

>

> so either get immunocal for glutathione, or check VERY CAREFULLY

> to find an alternative that meets all the production protocol.

>

> lef, life extension foundation, makes the stuff at low heat

> and it is UN denatured, so it has the glutathione effect.

>

> i have taken it for over a week, and i think my energy has gone

> up another level even over the ambrotose which i am also taking,

> along with st. johns wort and soil based organisms.

>

> that along with antibiotics for chlamydia and antifungals and

> antioxidants had me able to do the whole back yard today. (i have

> a relatively big back yard for an urban yard. - bigger than any

> yard in the bay area or queens or most of chicago for example.)

>

> the big test, will i wake up with a sore throat and swollen

> glands tomorrow? read the next installment to find out

> how nancy did. TOMORROW!!! i can't wait.

>

> nancy mcfadden

>

> ------------------------------------------------------------------------

> Share the wealth!

> http://www.ONElist.com

> Tell a friend about ONElist's 130,000 free e-mail communities!

> ------------------------------------------------------------------------

> This list is intended for patients to share personal experiences with each

> other, not to give medical advice. If you are interested in any treatment

> discussed here, please consult your doctor.

[Guest guest]

G. McFadden wrote:

> From: " G. McFadden " <nmcfadden@...>

>

> cheryl in florida, 4-29-99

> thanks for what you wrote defending dr. c.. i thought

> the banning threat was unreasonable as well. by mentioning

> two people, he was acknowledging that nothing was proven,

> that this was totally anecdotal.

>

> i think that dr. c, you are very nice to offer any ideas.

> while I appreciate both of our moderators, in this case i

> agree with cheryl from florida.

>

> nancy mcfadden

> nashville tn

,

Dr. C was banned from the list.

Marcia

[Guest guest]

Hi,

Did anyone watch program on TLC about the gulf War Syndrome tonight?

It was so frightening that my heart just pounded all through it!

The coverups by UK and Pentagon concerning vaccines and pills soldiers had

to take, resulting in nerve damage and birth defects,

was appalling! Uk lied about these things, and Pentagon claimed they

" lost " pertinant data about the toxicity of these drugs!

The Congressional Investigator called this " the Pentagon Syndrome. "

There is man here who was in Gulf War and didn't trust the vaccines, etc.

He headed a platoon and shared his concerns with his men, and these men

didn't take the meds (leader looked other way). The upshot is that he and

his men are not sick.

I guess the lesson here is this is good evidence to be wary of a

governmentthey harms people and denies it. Not much different than big

business dumping chemicals and denying obvious health problems that

occured. In Michigan about 20 years ago, fire retardant, called PPB was

dumped into cattle food. Animals died, farmers got sick, and people here

now carry PPB in their fat.

A while after this happened(didn't know about this for a while, it was

hushed), I had crusty red rings on my arms, profound weakness, and pain

while breathing. It took a year to improve, but this was one of my set

backs. I still wonder if this is a part of what is wrong with me.

I wonder if there is any safe place to live? I think I'd like to go sit in

the Rain Forest and de-tox! We certainly have harmed our planet and

ourselves by trying to overcontrol nature.

Take care.

Christie

tab@...

[Guest guest]

In a message dated 5/11/99 12:19:27 AM Eastern Daylight Time,

CHellmann1@... writes:

<<

Cynthing M. Hellmann >>

Obvously, I don't have to bother to dismiss Cynthing (?)!!! But posts were

obviously taken out of context. If anyone wants to discuss Ampligen further,

please be sure that you have personal experience with it and don't break the

rules. Thanks!!! C Hellmann seems to have had a tirade all by

herself....guess she had an utlerior motive or just a " CFIDS moment " but,

hopefully, we'll all go on as we were before this was brought up out of

nowhere until the next one hits!!!! <g> I can wait!

Gail

[Guest guest]

I tried to tell that I was totally inexperienced in this line, but she

assured me it was so simple. My apologies to everyone for the prior posts.

They were sent by an assumed member's name and the poster was yet another

Ampligen " Stepford Wife " from Incline Village. quickly picked up on

these....but I'm so naive that I think everyone joining is joining to share

and get answers!! Oh, well. Let's go on with what we were talking about

before we were so rudely interupted!!! <g>

Gail

[Guest guest]

In a message dated 5/15/99 9:09:08 AM Eastern Daylight Time,

anewdawn99@... writes:

<< I went to the Neurologist to find out the results of my MRI because of

these severe headaches/neck pain. Well,the results were normal. He said it

was all due to the >>

If he's not totally familiar with MRIs, then he may have been mistaken. I

remember that over 10 years ago, I attended a lecture by Dr. Bell. One

man, during the question and answer period, stood up and asked about MRSs and

waved his in the air. Dr. Bell asked him to bring his up. After just

seconds, Dr. Bell said, " Well, it appears that you suffer from migraines,

have a balance problem... " etc. The man asked if he was a phychic and Dr.

Bell just laughed and said, " No, I'm reading your MRI! Most doctors don't

know how to read them unless they see severe abnormalities. The ones that

show up on most patients with this illness are subtle, but you have to have

someone experienced to read them correctly. "

Gail

[Guest guest]

StealthVirus-Patientonelist is what one member asked for.

Gail

[Guest guest]

Sorry about that post about garlic et al. That was someone who just entered

and left before I could get to them. Some people have nothing better to do

than to annoy others. Guess we should feel sorry for them....or maybe wish

this awful disease on them....?

Gail

[Guest guest]

I'm trying to figure out what are the best things to

take to build up my immune system and to not have

severe set backs (reaction to medications,

supplements, stress, etc.). Can someone help me with

this. There is so much out there I'm a little confused

at the moment.

Thanks,

_________________________________________________________

[Guest guest]

What have you tried so far?

LOL

Steve

> Re: (no subject)

>

>

> From: <safreed@...>

>

> I'm trying to figure out what are the best things to

> take to build up my immune system and to not have

> severe set backs (reaction to medications,

> supplements, stress, etc.). Can someone help me with

> this. There is so much out there I'm a little confused

> at the moment.

>

> Thanks,

>

>

>

> _________________________________________________________

>

[Guest guest]

Hi Blaine:

Thanks for the info on MSM. The book also says the same as Cheney. I am

taking 1,000 mgs. a day in the morning. I don't notice anything except a

slight stomach ache if I don't eat right away. The brand is Natrol. Can you

give me the Phone # where you get yours? and what are the mgs that you are

taking?

Dianne

[Guest guest]

Your right. There are so many supplements from which to choose. The supplements

that I take are recommended by my physician based upon her testing; either

electrodermal testing or the biological

terrain assessment. If you can find a doctor or practitioner proficient in these

techniques it might be beneficial. One of the best web sites that I've found

regarding immune function is " keep hop

alive " . Look for it or " positive health news " . It geared toward AIDS and CFS.

Phil

safreed@... wrote:

> From: <safreed@...>

>

> I'm trying to figure out what are the best things to

> take to build up my immune system and to not have

> severe set backs (reaction to medications,

> supplements, stress, etc.). Can someone help me with

> this. There is so much out there I'm a little confused

> at the moment.

>

> Thanks,

>

>

>

> _________________________________________________________

>

[Guest guest]

Oh, but wait, there's more!!!!

[Guest guest]

Hi Kerry, I too have had achalasia for 13 years now. So far I've been dilated

7 times, the last time in Sept. I'm hoping it will be the last time but I

don't think so. Looks like it can strike anyone at any age. I'm 69 and didn't

know anyone else who had it till I started looking into it on my computer.

It's good we have this site to hear from others with the same situation. I

have not received any myotomys (yet). Let me know if you would like to know

more.

[Guest guest]

Hi Kerry, my name is . I have had 2 dilations and just had a

myotomy on November 1. You say you have had 2 myotomies? I

am 24, my problems started last September. Your achalasia returned

after the first? How long did it take before it returned? That

is kind of scary!! I sure hope that this is the only myotomy I have

to go through. Ran into complications with mine, and had to cut an

incision about 12" long. Could you tell me a little more about your

symptoms after the first myotomy?

Kerryosb@... wrote:

Hello,

I'm not sure what this is all about,

but would like to hear from

others who live with thing called achalasia.

I was ninteen when my problems

began and am now thirtytwo. I have had

many dillitations and two traditional myotomys.

Anyone with simular treatments?

Kerry Osborne

------------------------------------------------------------------------

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-- Talk to your group with your own voice!

-- VoiceChatPage?listName=achalasia & m=1

[Guest guest]

Had my first and, I hope, last dilation last week. I am 56 years old

and my symptoms started about 6 months ago. So far everything seems to

be working again, but I am being cautious about my eating behavior. Any

suggestions on how to keep it working?

[Guest guest]

All I can tell you is what is working for me. I have to eat very slowly, chew

my food till it's mush, take a sip of whatever I'm drinking at the time. My

first dilation was 13 years ago. I was all right for the next 9 years. Was

dilated twice in 95, twice in 97 and twice so far in 99, and I'm 69 years

young.

[Guest guest]

Hello!

The risks of cancer, as I understand it, increase the longer the disease is

left untreated. Apparently the lining of the esophagus undergoes stress

that is placed on the cells through repeated regurgitations and undigested

food which remains in the esophagus, but mostly through reflux.

Hope this info helps -

Carol

(no subject)

> Can someone please let me know what the Cancer risks are ? when I was

frist

> told I had this the Drs. told me that the chance of getting Cancer are

slim.

> Does anyone khow if this is true? Please let me know.

>

>

> Need to

know

> (worried)

>

>

>

>

>

>

>

>

_____NetZero Free Internet Access and Email______

http://www.netzero.net/download/index.html

[Guest guest]

Hi Carol thanks for the info thats what I thought , could you tell me wich

procedure is the best treatment for this I go tomarrow to talk to the Doctor

Thanks Pat

[Guest guest]

Hi, Pat -

Traditionally, doctors will want to proceed conservatively with treatments

and there are only the two options available before going on to surgery.

One is botox injection and most literature I've read suggests this is a

short term (6 to 12 months) remedy but may work more effectively in certain

cases, such as length of time patient has been suffering with achalasia and

age of patient. Other, more common, treatment is balloon dilatation. I

can't remember if you've had this done or not (have to go back in message

boards to read past letters and I'm doing this email on the run right now).

Balloon dilatations, too, are usually short term solutions but the length of

time they provide relief varies. Some folks get a few good months, some

years. I've known of a couple of people who have had only one dilation and

that seems to have " cured " them. Both botox and balloon treatments are

performed through endoscopic technique so the preparation is the same and

procedures done under sedation. Personally, I'd recommend the dilation. I

had two and the second one held me in good stead for about 18 months before

I had the myotomy.

Good luck with doctor - hope this info helps. Let us know what you decide.

Carol

Re: (no subject)

> Hi Carol thanks for the info thats what I thought , could you tell me wich

> procedure is the best treatment for this I go tomarrow to talk to the

Doctor

> Thanks Pat

>

>

>

>

>

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