New to this group

[Guest guest]

Good luck Greg! Keep everyone posted! Sincerely, Elena

[Guest guest]

Greg - Have to assume that for some reason your posting was delayed until

after your surgery on Dec. 31 (what a way to end the year!) and that by now,

you're home and recovering well. Let us know how you're doing.

As far as what the future holds decades from now, you're right: myotomies

have not been performed for that long, esp. by laparoscopic method.

Thoracic approach was done before then, but I have not seen any follow-up

statistics on these older cases.

Take care -

Carol

New to this group

> HI,

> I only found this group last week, and as with other new subscribers

reading

> other peoples stories makes me feel a lot more comfortable with finally

> deciding to have the surgery. I have had achalasia for about 5 years now,

> have tried medication and balloon dilatations (which made a noticeable

> difference for about 12 months) as well as chiropractic (the right side of

> my rib cage was sitting slightly lower than the left hand side, so maybe

> posture and trauma from throwing myself around sporting fields may have

had

> something to do with it - who knows?) and have finally bitten the bullet

and

> decided to go for the laparoscopic myotomy. Like many of the e-mails I

have

> read in this group I have trouble holding down food, and it is comforting

to

> know that I am not having heart problems at age 29 rather the pressure is

> related to the achalasia. I am having the surgery on the 31st of December

> and will let people know the results. It is comforting to know other

people

> have had success, as one of the reasons I have put surgery off is it is

> final and there is no going back.

> It would be fantastic if western medecine could treat the cause of

achalasia

> rather than treat the symptoms, but until a whole lot of research is done,

> the surgery will have to do. I hope my operation is succesful. Can people

> let me know what the long term outcome of the surgery is, like 20 or 30

> years down the track, or is

> the surgery still fairly new and no one is really sure?

> Again thanks to you all for sharing your stories, they give me hope.

> Greg.

>

>

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

>

>

>

>

>

Shop online without a credit card

http://www.rocketcash.com

RocketCash, a NetZero subsidiary

[Guest guest]

Hi Greg,

I too am a 29 year old achalasia sufferer! I have had achalasia for a

little over 2 years and I am coming up on the 1 year anniversary of my

myotomy. I have to tell you that the surgery improved my life about 100%.

Before it I couldn't eat anything without choking it back up. I also had an

enormous sensitivity to cold drinks, I couldn't swallow them at all. My

throat would just seize up and I felt like I was going to choke to death. I

got pretty tired of having to drink warm milk, pop or beer! Anyway, since

then I can eat just about anything that I want. I have to be really careful

with bread products and big chunks of meat and potatoes and I still drink a

lot of water when I eat just to make sure that everything goes down but all

in all it's an incredible improvement. I am even brave enough to go to

restaurants now, something I wouldn't do at all before the surgery.

Unfortunately for me I didn't find this group until after I have already had

all the tests and the surgery so I really missed out on all of the support

and advice offered by others with achalasia. I am glad to belong to it now,

it takes away the feeling of isolation that comes with having something so

unusual!

Definately go for the surgery, you won't regret it. Good luck and keep us

posted!

New to this group

> HI,

> I only found this group last week, and as with other new subscribers

reading

> other peoples stories makes me feel a lot more comfortable with finally

> deciding to have the surgery. I have had achalasia for about 5 years now,

> have tried medication and balloon dilatations (which made a noticeable

> difference for about 12 months) as well as chiropractic (the right side of

> my rib cage was sitting slightly lower than the left hand side, so maybe

> posture and trauma from throwing myself around sporting fields may have

had

> something to do with it - who knows?) and have finally bitten the bullet

and

> decided to go for the laparoscopic myotomy. Like many of the e-mails I

have

> read in this group I have trouble holding down food, and it is comforting

to

> know that I am not having heart problems at age 29 rather the pressure is

> related to the achalasia. I am having the surgery on the 31st of December

> and will let people know the results. It is comforting to know other

people

> have had success, as one of the reasons I have put surgery off is it is

> final and there is no going back.

> It would be fantastic if western medecine could treat the cause of

achalasia

> rather than treat the symptoms, but until a whole lot of research is done,

> the surgery will have to do. I hope my operation is succesful. Can people

> let me know what the long term outcome of the surgery is, like 20 or 30

> years down the track, or is

> the surgery still fairly new and no one is really sure?

> Again thanks to you all for sharing your stories, they give me hope.

> Greg.

>

>

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

>

>

>

>

>

>

>

[Guest guest]

In a message dated 6/25/01 3:57:18 PM Alaskan Daylight Time,

laura_j_Luster@... writes:

>

> Is there any way you can switch to web only? That way you can read

> through our archive and get a better understanding of who is here?

>

>

>

Sure, how do I do that?

Cheryl

[Guest guest]

Hi Cheryl!

I live in Alaska too, Anchorage. Where are you at? I have 3 kids, a 10

year old girl who has had all vaccines but the ones the school district

is mandating this fall, an 8 year old son who has had seizures since his

2nd DPT shot at 4 months and a 22 month old son I will not vaccinate.

Send me an e-mail to my regular address and we can swap more info. Check

out the Alaska Wellness Magazine this month, found at most grocery

stores and other locations (It's a free publication found in the front

of stores). It has our son's story in it as well as another excellent

article by Sandy Mintz. I'm thrilled to have hooked up with another

Alaskan! Maureen

[Guest guest]

In a message dated 6/25/01 4:39:40 PM Alaskan Daylight Time,

sandym@... writes:

>

Sandy, thank you so much for this, I really appreciate your hard work! I'm

looking for disease rates in our area, can I find that on your site somewhere

or do you know of another site that would have that info? Nice to have

someone from the same area to communicate with!

Cheryl also from Alaska

[Guest guest]

Is there any way you can switch to web only? That way you can read

through our archive and get a better understanding of who is here?

> Hello, I just joined this e-mail loop and am receiving mail already

and it

> makes me feel a little uncomfortable not knowing anything about

anyone. I

> would appreciate if at least some of you could tell me a little

about why

> you're here. I have a 3yo who has had most of his vax and a boy

born May 4

> who will probably never be vaxed. I live in Alaska and he would

either have

> to have all vax or none so I choose none. Anyway, enough about

me...

>

> Cheryl

>

>

>

[Guest guest]

Cheryl, Welcome! I'm from Alaska, too! Please consider going to my website

www.vaccinationnews.com. I think you should be able to search the archives

for everybody's intro information. Am I right, anyone?

Sandy from Alaska

ALL INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE

IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS

REFLECTING THE KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE

CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR LEGAL ADVICE. THE DECISION

WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE

MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.

New to this group

Hello, I just joined this e-mail loop and am receiving mail already and it

makes me feel a little uncomfortable not knowing anything about anyone. I

would appreciate if at least some of you could tell me a little about why

you're here. I have a 3yo who has had most of his vax and a boy born May 4

who will probably never be vaxed. I live in Alaska and he would either have

to have all vax or none so I choose none. Anyway, enough about me...

Cheryl

[Guest guest]

You don't have to switch to web only to read the archives - any member can

read the archives

vaccinations

Welcome

Sheri

moderator

At 10:52 PM 06/25/2001 -0000, you wrote:

>

>Is there any way you can switch to web only? That way you can read

>through our archive and get a better understanding of who is here?

>

>

>

>

>> Hello, I just joined this e-mail loop and am receiving mail already

>and it

>> makes me feel a little uncomfortable not knowing anything about

>anyone. I

>> would appreciate if at least some of you could tell me a little

>about why

>> you're here. I have a 3yo who has had most of his vax and a boy

>born May 4

>> who will probably never be vaxed. I live in Alaska and he would

>either have

>> to have all vax or none so I choose none. Anyway, enough about

>me...

>>

>> Cheryl

>>

>>

>>

[Guest guest]

, what an excellent idea!

Kathleen

In a message dated 6/25/2001 6:57:13 PM Central Daylight Time,

laura_j_Luster@... writes:

> Is there any way you can switch to web only? That way you can read

> through our archive and get a better understanding of who is here?

>

>

>

>

> > Hello, I just joined this e-mail loop and am receiving mail already

> and it

> > makes me feel a little uncomfortable not knowing anything about

> anyone. I

> > would appreciate if at least some of you could tell me a little

> about why

> > you're here. I have a 3yo who has had most of his vax and a boy

> born May 4

> > who will probably never be vaxed. I live in Alaska and he would

> either have

> > to have all vax or none so I choose none. Anyway, enough about

> me...

> >

> > Cheryl

> >

> >

> >

[Guest guest]

Hi , not much to tell. I am a stay at home mom also. I have an

11-month old permanently unvaxxed daughter. I am part of this group because

I enjoy the people and love learning about and discussing all things

vaccination and everything else that the subject of vaccination leads to.

Kathleen

In a message dated 7/11/2001 10:40:50 PM Central Daylight Time,

nmiles@... writes:

> Hi all

> Just thought I would let you know a bit about us...

>

> I am a mum to a 14 month old daughter whom has had all her vaccinations

> up to date ecpect MMR injection...We at this stage will not be giving this

> to her as I have a very big gut instinct and I will not let anyone do it....

> Lucky...we have a doctor whom we have been seeing a few years who lets the

> parents decide what is best for there child....I also have a understanding

> daycare centre where our daughter goes part time...

>

> I am a at home mom for the moment until the end of the year when I will be

> thinking about going back to sales work (what I used to do for many years

> till I had a child). My partner (whom Im engaged to for 2 and a bit years)

> works as a software developer with computers with a company near home...He

> enjoys it more than his last job as they are more friendly frendly....

>

> Can you all tell me a bit about yourselfs so i can get to know most off you

> as I intend to be here for quite a while....

>

> thanks

> (aka Nic for short)

>

[Guest guest]

Welcome Nic -I'm Jill mamma to Jake 15 months old and he has toxin free blood.

[Guest guest]

Hi Nic,

I am Dena, also new to the list. I enjoy this list because they do allow

off topic conversations which encourages all to get to know each other a

little better.

I am an x-RN, SAHM, homeschooler, non-vaxer, non-establishment for the most

part. I do nurse my grandmother whom had a stroke 4 years ago. We have

been doing this in our home all this time, what a challenge. I am very much

into essential oils which I use for everything from A-Z. Hope you enjoy

your stay here, many blessings,

Doc and Dena

=================================================

Discover the most powerful natural healing substance on Earth,

the Compensation Plan destined to put you on easy street

and the Automated Marketing System that makes it happen.

www.spiritualaroma.com

=================================================

New to this group

> Hi all

> Just thought I would let you know a bit about us...

>

> I am a mum to a 14 month old daughter whom has had all her vaccinations

> up to date ecpect MMR injection...We at this stage will not be giving this

> to her as I have a very big gut instinct and I will not let anyone do

it....

> Lucky...we have a doctor whom we have been seeing a few years who lets

the

> parents decide what is best for there child....I also have a understanding

> daycare centre where our daughter goes part time...

>

> I am a at home mom for the moment until the end of the year when I will be

> thinking about going back to sales work (what I used to do for many years

> till I had a child). My partner (whom Im engaged to for 2 and a bit years)

> works as a software developer with computers with a company near home...He

> enjoys it more than his last job as they are more friendly frendly....

>

> Can you all tell me a bit about yourselfs so i can get to know most off

you

> as I intend to be here for quite a while....

>

> thanks

> (aka Nic for short)

>

> Ever lost touch, Let a good friendship die 'Cause you never had time to

call

> and say, " Hi " ?

> Time is short and doesn't last!!!! (so enjoy it while you can)

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Nic!

I'm Sue from Wales in the Uk. Im a stay at home mum of a just gone 2 yr old,

Ruby . She has iunfortunately been vaxxed up to but not including the

MMR and the Men C. She will NOT be having these or any others from now on. I

have been married for 10 years and intend on trying for another child next

year........:-)

Welcome to this list!! It is soooo informative! Everyone is wonderful, friendly

and very helpful! Just ask away and someone will be able to point you in the

right direction! :-)

SUE

[Guest guest]

Hi Nic,

My name is . My husband and I have a 14 1/2 month old son named Jordan.

When is your daughter's birthday, and what is her name?

Jordan has not had any shots and I'm convinced (from all that I've learned here

and from the examples I've seen) that I won't be giving him any shots at all. I

would say you are right to go with your gut instinct!

We are raising Jordan on as much fresh & raw fruits & veggies as we can too - he

loves them and people are shocked to see a baby that loves to eat like that. I'm

on a great e-list for feeding babies in this healthy manner, if you're

interested, let me know and I'll tell you more and give you the list where you

can sign up.

It's great to have you aboard. BTW, where are you from? Your letter sounded as

though you were from England. I'm from the USA - the state of Illinois.

M. Parish, CPRW* (Certified Professional Resume Writer)

Career Coach / Business Start-Up & Support Consultant

CareerPlan, Inc., Premier Career, Business, and Life Planning Services

TOLL FREE: (888) 449-2200; EMAIL: Resume@...

New to this group

Hi all

Just thought I would let you know a bit about us...

I am a mum to a 14 month old daughter whom has had all her vaccinations

up to date ecpect MMR injection...We at this stage will not be giving this

to her as I have a very big gut instinct and I will not let anyone do it....

Lucky...we have a doctor whom we have been seeing a few years who lets the

parents decide what is best for there child....I also have a understanding

daycare centre where our daughter goes part time...

I am a at home mom for the moment until the end of the year when I will be

thinking about going back to sales work (what I used to do for many years

till I had a child). My partner (whom Im engaged to for 2 and a bit years)

works as a software developer with computers with a company near home...He

enjoys it more than his last job as they are more friendly frendly....

Can you all tell me a bit about yourselfs so i can get to know most off you

as I intend to be here for quite a while....

thanks

(aka Nic for short)

Ever lost touch, Let a good friendship die 'Cause you never had time to call

and say, " Hi " ?

Time is short and doesn't last!!!! (so enjoy it while you can)

[Guest guest]

, welcome,

I'm Jen, mom to Mitch - healthy, happy, bouncy 15 month old. I first

investigated the effects of vaccines when Mitch kept getting a nasty eczema type

of rash - immediately after his 2 mos. shots - it cleared up (with cortisone

cream) until he got his 4 mos. shots - and flared up again - it started to get

better, and we were going in for our 6 mos. check and shots and he started

teething - fever, runny nose everything - so I skipped the appt. because he

wasn't feeling well - never gone back since - he's been nine months without a

doctor's visit - knock on wood - never had a lick of skin trouble since he

stopped the vaccinations either. When I started enquiring as to vaccine effects

I was led to this list and the rest is history. I am very afraid of the MMR -

I'm one of those dubious moms who has had the innoculation 2X, had measles once

anyway and a child who already showed eczema as a reaction to the shots - makes

me nervous to think what could have happened to him if I'd let the docs do his

year shots. Anyway, I'm Canadian, I eat meat (lots of organic), partake of

lovely veggies from my organic garden out back - just brought in some whopping

beets, beans and broccoli, stay away from sugar (best way to lose 3 pounds a

week) and eat as much whole foods as possible - Mitch has been eating whole

foods since he was 6 months - he was tongue-tied and oxygen deprived (damn

Nubain) at birth and so had a very difficult time latching on - 1 hour straight

of screaming convinced me I'd feed him formula and pump my milk for him - I

pumped for about 5 weeks, then my supply lost to his demand. I would have weaned

him at 8 months regardless - I'm not in it for the emotional aspect - I'm in it

for the nutrition - and at 8 mos. with teeth - he would have been weaned -

didn't matter anyway - he didn't have formula past 9 months - he's been eating

same meals as us since 7/8 months anyway.

One thing that I've noticed is newcomers often go through a stage where they'd

rather forget what they've learned - it is SO much easier to be ignorant than

informed - in the short term - long term - I'm glad I know what I know.

BTW my dog is also natural - selectively vacced - although suffers from

hypothyroid.

TTFN

Jen Sider

First Dog Off the Porch Enterprises

Mom to , friend to Indy the buckskin pitbull.

Remember one day you're a hero, the next. . . a zero!

Check out baby at

http://shutterfly.babycenter.com/my/boy.jsp?id=f7c350fc92326529

[Guest guest]

Hi, Tonia!

Which other list did you come from? Many of us on this list also are on

others. Lots of sharing!

Have you had any of your children tested for heavy metal toxicity? My

daughter has Mercury poisoning from vaccines. Horrible, a nightmare come

true. She is Autistic, MR, and had seizures for years. Thank goodness she

stopped having seizures (took me a while to figure it all out).

Welcome!

New to this Group

I just was introduced to this group from another list I am on. I am 5

months pregnant with #4 and don't plan on Vaccinating this one at all. We

have done our other children except the 3rd one has not completed all of his

due to health problems and we are not continueing any of them.

All of our children are special needs children and we associate most of it

due to the vaccines now. Our oldests boy is 7 and has Bi-Polar,

ODD, RAD, ADHD, Asthma, Seizures (several types). He is in a special

education class for major behavior issues. Has been in residential

treatment 2 times so far and now also has a criminal history and is on

probation.

Savannah is 4 1/2 yrs. She has disprexia, PDD, regressive behaviors

(majorily) and is lactose intolerant. She is in speech therapy and goes to

Head Start School as well as another Special School for more help. We are

not sending her to Kindergarden next year even though she will be of school

age. She just isn't ready at all. She is a little toddler still!

is 2 1/2 yrs and has many major medical issues. He has asthma,

trecha melichia (sp?), (50% air way when he doesn't have a virus), reflux,

many food allergies (dairy, soy, rice, chicken, pears, pineapple, protein).

He was with Early Intervention up until just recently for speech, OT and PT

therapy. He is doing much better that way now and is progressing quite

well.

We just moved to Ohio from Oregon in October to try and get some additional

help for your oldest son. So we are still learning how things work here and

have been told that we must vaccinate our children so that they will be able

to attend school. I am trying to find another way around that! I don't

want the new baby to have anything at this point. We all hope that we are

doing the right thing. My husband is all for it as well, if it means a

healthy baby. My body isn't doing well with the pregnancy though and this

will probably be our last one.

Thank you for allowing me to be a part of this group and I hope to learn

alot more here as time goes on.

Tonia

Need some Spring/Summer Children's Clothes Email Me For GREAT Sale Prices!

Baby Bubble Bottoms: http://www.babybubblebottoms.com/

Consignment Store:

http://store.babybubblebottoms.wahmbiz.com/products/index.asp

7 yrs, Savannah 4 yrs, 2 yrs, EDD 7/2002

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

[Guest guest]

In a message dated 3/21/02 4:02:29 PM GTB Standard Time, kilgorevt@...

writes:

<<

We just moved to Ohio from Oregon in October to try and get some additional

help for your oldest son. So we are still learning how things work here and

have been told that we must vaccinate our children so that they will be able

to attend school. I am trying to find another way around that! >>

Welcome to Ohio Tonia

I am in Brunswick ohio.Ohio has all three exemptions so it is really easy to

avoid vaccines.You just need to write an affidavit,or sign an exemption form

if the school supplies one.LMK if the link did not work:

you can find it at library in state statute books,reference section.All you

need to do is write an affidavit stating you are claiming an exemption from

vaccination mandates as permited by ohio law for your child(ren).Sign date

and notarize.

Sara in Brunswick

<A

HREF= " http://onlinedocs.andersonpublishing.com/revisedcode/text.cfm?GRDescript

ion2=title%2033 & GRDescription3=text%20of%20statute & GRStructure1=3313 & GRStructu

re2=3313%2E671 & TextField=%3CFD%3A%22Section%20Heading%22%3E%3CJD%3A%223313%2E6

7%2E1%22%3E%5B%A7%20%3CJL%3AJump%2C%223313%2E671%22%3E3313%2E67%2E1%3CEL%3E%5D

%20%3CJD%3A%223313%2E671%22%3E%A7%203313%2E671%20Required%20immunizations%3B%2

0exceptions%2E%3C%2FFD%3A%22Section%20Heading%22%3E " >Click here: [§

3313.67.1] § 3313.671 Required immunizations; exceptions.</A>

[§ 3313.67.1] § 3313.671 Required immunizations; exceptions.

Text of Statute

[Guest guest]

Sara,

Don't they have the " blue " card re: immunizations you get with your school

packet; i.e., if they do, all you'd have to do is turn the card over, and

sign (put an " x " ) in the area marked for philosophical exemptions. At least

that's what we do here in California. It's easy....just be sure to notify

the school officials that you're aware of your rights and you're aware that

all three exemptoins are allowed you according to Ohio State law, and that

should be the end of it.

Kim

Re: New to this Group

In a message dated 3/21/02 4:02:29 PM GTB Standard Time, kilgorevt@...

writes:

[Guest guest]

Every state is different.

At 05:28 PM 03/21/2002 -0800, you wrote:

>Sara,

>

>Don't they have the " blue " card re: immunizations you get with your school

>packet; i.e., if they do, all you'd have to do is turn the card over, and

>sign (put an " x " ) in the area marked for philosophical exemptions. At least

>that's what we do here in California. It's easy....just be sure to notify

>the school officials that you're aware of your rights and you're aware that

>all three exemptoins are allowed you according to Ohio State law, and that

>should be the end of it.

>

>Kim

>

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

Sheri Nakken, R.N., MA

Vaccination Information & Choice Network, Nevada City CA & Wales UK

$$ Donations to help in the work - accepted by Paypal account

vaccineinfo@...

(go to http://www.paypal.com) or by mail

PO Box 1563 Nevada City CA 95959 530-740-0561 Voicemail in US

http://www.nccn.net/~wwithin/vaccine.htm

ANY INFO OBTAINED HERE NOT TO BE CONSTRUED AS MEDICAL OR LEGAL ADVICE. THE

DECISION TO VACCINATE IS YOURS AND YOURS ALONE.

Well Within's Earth Mysteries & Sacred Site Tours

http://www.nccn.net/~wwithin

International Tours, Homestudy Courses, ANTHRAX & OTHER Vaccine Dangers

Education, Homeopathic Education

CEU's for nurses, Books & Multi-Pure Water Filters

[Guest guest]

Hi again, .

I read your posting about trouble with seeing your

posts before I read the posting about your story. By

the way, in case you may be wondering, it seemed to

post just fine. Wow! What a story!! Being born

withoout an esophagus sounds terrible! I have never

heard of anything like that. And to make matters

worse, that the man made one would actually develop

achalasia. You poor thing! Anyway, I just wanted to

tell you that you can disregard the questions from my

previous post, because you basically answered them in

your story. Hope to hear from you soon.

Kari

--- kfort0824 <kfort0824@...> wrote:

> HI:

> My name is , I am a 35 yr female. As an infant,

> I was born

> without an esophagus. After many surgeries, the last

> being in 1972

> when I was 5, the surgeons had created an esophagus

> out of pieces of

> my intestine.

>

> Everything seemed to be going fine until about 2

> years ago. I began

> to notice that occasionally food and beverage would

> just kinda sit

> there and not go down to well. Now I am to the point

> where I cannot

> eat or especailly drink ANYTHING without choking and

> coughing. I had

> a consult with a gastroenterologist who ordered an

> esophagram

> immediately that day which showed that indeed, the

> barium just " sat "

> there and only went down with gravity. It also

> showed that now only

> did it not go down well, once it was down, it didnt

> stay there. Be

> ause of that, I aspirate every liquid into my lungs.

> I do get

> pneumonia quite often. The swallow showed that my

> man-made esophagus

> was no longer functioning and did not move at all.

> Laying down is

> torture for me because everything comes rushing back

> up.

>

> He then ordered an endoscopy, which I did last

> Thursday, his comment

> was " well, the procedure went well, I am looking

> into the diagnosis

> of ACHALASIA " . Never hearing of that before, I

> decided to look into

> it online and stumbled into this great room!

>

> I have a motility test scheduled for 8/8. The Dr.

> had said he does

> feel that I have reconstructive surgery in the

> future. I am OK with

> this because, as most of you know, you just dont

> want to continue

> your life like this. You begin to dread drinking

> anything, in fear

> that you will end up in a choking fit that you cant

> control.

>

> I just want to thank you all for posting so many of

> your stories. It

> has opened my eyes to something that I had never

> even heard of

> before. I work in a Family Practice and have seen

> and heard of a lot

> of things, but never ACHALASIA.

>

> I hope this message ends up being posted. I have

> posted another

> message on 7/25 but I am not sure what happened to

> it, as it never

> showed up. I look forward to " meeting " some of the

> people who are

> living just as I am!

>

> Do you have a designated time/day that some of you

> go into the chat

> room? I would like to join if thats ok.

>

> Sincerely,

>

>

>

>

__________________________________________________

[Guest guest]

On Thu, 10 Jul 2003, R. Brill wrote:

> I think stress is a big factor in this disease. I

> don't know about causing it but it sure brought mine

> on 2 1/2 years ago. Welcome to the group. It is good

I have to agree with this. I had my first bad bout - couldn't eat for

three weeks - in May, during, not-so-coincidentally, my finals for college

and the week before and after my wedding. I'm now taking summer classes,

working full-time and volunteering at the library, and I'm having another

bad bout. My husband is asking me to find a new, less tiring job

(possibly part time), because this is making him crazy.

The frustrating part of all this is - we're going to Washington, DC to

have a wedding celebration with our friends down there at my favorite

restaurant, and I can't eat anything! It's like my wedding night all over

again!

- Nikki

--

*********************************************rednikki@...********

[Guest guest]

Welcome Joanne. We are glad you found us

and we are happy to have you join our group.

I am sure others here can learn from your

experiences.

I have been able to control my spams most of

the time by drinking water as soon as I feel it

coming on. I don't just take sips, I guzzle it

down. Others have done the same. Some prefer

cold, some room temperature, so if one don't

work try another.

Maggie

Alabama

[Guest guest]

Welcome Joanne! I'm glad to hear you had relief of most of your symptoms with the surgery. The "spasm pains" are quite a hassle. I wish doctors would do more to address the problem -- they seem to focus only on the swallowing and not on the pain part of the disease. If you do a search in the archives on "spasm" you'll find info about ways to treat the spasm pains.

Here's some basic info that I've posted in the past -- different things work for different people, so it's basically just an experiment to find what works for your situation.

The official medical term for the "spasm pain" is "NCCP" -- Non Cardiac Chest Pain.

Here are some different coping methods to try:

-- Swallowing something warm or something cold

-- CCB medication (calcium channel blockers) -- I prick the shell of a nifedipine capsule and squirt it under my tongue. It absorbs into the bloodstream under the tongue (this is called a sub-lingual medication, meaning under-tongue) and relaxes smooth muscle tissue (which is what the esophagus is made up of.) unfortunately, it can also lower your blood pressure (usually only a problem if you already have low BP to begin with) and cause a headache afterwards

-- Nitroglycerin medication -- works in much the same way as the CCB mentioned above, and can also be taken sublingually for fast relief.

-- Certain anti-depressant and anti-convulsant medications -- some people don't have NCCPs when on these types of medications, believed to be a function of the medicine's effect on serotonin in the brain.

-- L'Argnine supplements -- some people have found these relieve NCCP symptoms

-- If symptoms are debilitating and none of the methods above help, you may need a narcotic pain reliever, but definitely try all the options above first, b/c if you're on narcotics you can't drive, work, etc., and the vast majority of people can find relief in a way that doesn't involve narcotics

Like I said, if you search through the archives you'll find people's personal experiences w/ the different methods. Welcome again!

Debbi in Michigan

PS -- for those not familiar with the setup, there's a Search box on each page, towards the top of the page. It will search the old messages for the keyword you enter in the box, starting with the most recent posts. It will search a few hundred messages at a time, so you just click "next" for it to search the next batch.

Hi I a Joanne Mifsud age 29 yrs from Malta. I have had achalasia for 6 years now. I done the op 6 years ago. it was success at least i can eat and drink normally and I gained my normal weight. I had a boy after now he is four. My problem is chest pains with spasms but still it is not as bad as is was with swallowing. I wish to make friends with you that you all suffer from this same disorder. In Malta it is still quite new and rare.Joanne

[Guest guest]

Hi Debbie welcome to the list. Could you find out if the baby had the

Prevnar vaccine? They have found this condition in animals, (Jackie

have you heard of this)? In humans there was a link to the Prevnar

vaccine. I'm sure this isn't the only vaccine that can cause

Histiocytosis. The Mom could be harboring some of these viruses like

HHV-6 or EBV, (info below). Even though she is already pregnant

again, I think she should be tested for these viruses. If she is

passing them on to the babies, then immunizations can cause all kinds

of problems.

http://216.239.39.104/search?

q=cache:RwMm2aUs0LYJ:www.fda.gov/ohrms/dockets/ac/99/backgrd/3562B2_1.

doc+Histiocytosis%2BVaccines & hl=en & ie=UTF-8

Ten of these events were considered at least possibly related to

immunization with study vaccine by the investigator. These included

5 episodes of seizure (2 in MnCC recipients, 3 in 7VPnC recipients),

3 allergic-type reactions (2 in MnCC recipients, 1 in 7VPnC

recipient), and 2 episodes of apnea/breath-holding (2 in MnCC

recipients). All of these events were temporally related to

immunization in that they occurred either on the day of or one to two

days after immunization.

118-8: Number of Adverse Events

Resulting in Study Termination by Vaccine Group

Adverse Event

7VPnC

MnCC

Any

53

74

Seizures

40

43

ITP

0

4

Infection/Pneumonia

2

4

Allergic reaction/Rash

1

3

Evolving Neurol. Disorder/Develop Delay

3

5

Stroke

0

2

Apnea/Breath Holding

0

3

Congenital Heart Disease

2

0

Neoplasm/Histiocytosis

2

1

Head Trauma/Shaken baby

2

4

After reading the following paragraph, immunizations would definitely

have an effect!

http://www.emedicine.com/ped/topic1997.htm

Causes: The causes of most histiocytoses are not known. Infectious

agents (especially viruses) (Leahy, 1993); cellular and immune system

dysfunction (Willman, 1994; Yu, 1994; Hage, 1993), including those of

lymphocytes and cytokines (Kannourakis, 1994; Egeler, Proc 15th 1999;

Egeler, Blood 1999); neoplastic mechanisms; genetic factors (Ornvold,

1990; Yu, 1995; Katz, 1991); cellular adhesion molecules (Ruco, 1993;

de Graaf, 1994; de Graaf, 1995); and a combination of these have been

implicated in the etiology and pathophysiology of these disorders.

Although human herpes virus 6 has been found in lesions of LCH, its

etiologic significance has been questioned (Slacmeulder, 1999;

McClain, 1994; Ruco, 1993). Extensive searches for evidence of viral

infection have been unrevealing (Mierau, 1994).

There is also a connection with HHV-6 Herpes Virus 6 (the Roseola

virus). Also EBV Epstein Barr Virus.

Hum Pathol. 2004 Jul;35(7):862-8. Related Articles, Links

Expression of Epstein-Barr virus in Langerhans' cell histiocytosis.

Shimakage M, Sasagawa T, Kimura M, Shimakage T, Seto S, Kodama K,

Sakamoto H.

Clinical Research Institute, Osaka National Hospital, Osaka, Japan.

Langerhans' cell histiocytosis (LCH) is a proliferative histiocytic

disorder of unknown etiology. We previously reported that Epstein-

Barr virus (EBV) infects and proliferates in macrophages, and

investigated the possibility that EBV exhibits etiologic effects in

LCH. To detect EBV expression, paraffin sections from 17 LCH cases

were examined by mRNA in situ hybridization for EBV BamHIW, Epstein-

Barr virus nuclear antigen-2 (EBNA2), and Epstein-Barr virus-encoded

small nonpolyadenylated RNA (EBER1) sequences, and by indirect

immunofluorescence staining for EBNA2, latent membrane protein 1

(LMP1), and BamHIZ-coding leftward-reading frame 1 (BZLF1). To detect

EBV DNA, polymerase chain reaction (PCR)-Southern blotting was used.

All cases showed positive hybridization signals by BamHIW mRNA in

situ hybridization. Also, 13 and 14 cases showed positive signals for

EBNA2 and EBER1 RNA in situ hybridization, respectively. Furthermore,

almost all cases exhibited fluorescence after immunofluorescence

staining with monoclonal anti-EBNA2 and anti-BZLF1 antibodies, and 15

cases were positive after treatment with monoclonal anti-LMP1

antibody. PCR-Southern blotting detected an amplified EBER1 sequence

in all 9 cases examined. EBV expression was confirmed in LCH using in

situ hybridization and immunofluorescence. Furthermore, EBV DNA was

also detected by PCR-Southern blotting. These positive results of

BZLF1 suggest that EBV replicates in LCH tissues.

PMID: 15257550 [PubMed - indexed for MEDLINE]

> Hello to all, I am new to this group, so I will introduce myself

and

> tell you my story.

>

> My name is Debbie; I am Australian and I am the mother of 3 happy,

> healthy, non-immunised children, (F9, M7, F5). My children were

all

> born at home, I never had so much as a scan when pregnant and none

> of my children have ever had a serious illness - touch wood!! (My

> eldest daughter was diagnosed with chickenpox at one stage but as

> she wasn't ill and neither of my other 2 children contracted it I

> have my doubts...)

> Just recently I have found out that my cousins 19 mth old daughter

> (in Australia) has been diagnosed with a rare disease

> called " Histiocytosis " , which is supposedly a type of auto-immune

> disease which behaves in a similar manner to cancer, I cannot help

> wondering if the sudden onset of this disease may be linked to a

> recent immunisation. They are expecting a second child in a couple

> of months time and I fear for this little one if they choose to

> immunise again. If anyone has any information or experience with

> vaccine reactions of this type, please let me know.

>

> Well thats my story, I look forward to reading the posts to come,

> Yours in health, Debbie