New to group

June 3, 2001

I have a somewhat similar story except for the earlier surgery. I

was diagnosed at age 4 and will be 63 in a few days. I was made to

do exercises every day throughout my childhood and adolescence

( " Sister Kenny method " made famous by being FDR's treatment for

polio), was in a cast for most of 5th grade, then wore a brace for

several years. However, I never had surgery as a child or

adolescent.

My back seemed stable and didn't bother me much during my early adult

life but when I was in my mid-forties, the curve began progressing

noticeably and I began to have increasing pain. In the mid to late

1980s when I was in my late forties or possibly 50, I was measured at

48 degrees; this would be at about the same age as you are now and

with approximately the same size curve. Thirteen or fourteen years

later, however, at my last measurement in February 2001, it was 86.

Over the past 10 or 12 years the rate of progression has accelerated

dramatically and now I am scheduled for surgery in October. I don't

know if my experience is indicative for people who have had earlier

surgeries, however.

At present I can't stand at all without pretty bad pain and can't

walk for more than a few minutes unless I am leaning on a shopping

cart. If I am in a situation where I must stand, I too am looking

for a wall to lean on or a table to prop my hand on to hold myself

up. If I am at a sink washing dishes or my hands or face, I am

leaning on my forearms. Yet I can work out at an elliptical trainer

for 20 minutes at a pretty high resistance and good pace because I'm

using the handholds and so taking the weight off my back.

Not all curves progress but for mine there seems nothing but surgery

that will stop it. I did yoga for several years in the nineties and

have been following a rigorous exercise program complete with weekly

personal training sessions for the last 3 years (now twice a week in

preparation for surgery). While I am definitely stronger and don't

get quite so winded as quickly as before I started, at the same time

the curve has only gotten increasingly worse during this period so I

am definitely evidence for the " exercise can't keep the curve from

progressing " school of thought. Although it feels good to keep

oneself as flexible as possible, that seems a double-edged sword.

You benefit from flexibility but flexibility also permits a curve

that is programmed to progress to keep going. Once the curve gets

bad enough, and if it is flexible, the rate of progression increases

more rapidly by the pull of gravity alone. With my classic S curve

and top and bottom going in opposite directions, there is not any

support for the upper part of my spine so it has just continued to

fall over.

With all the X-rays you have taken, can you establish a trend for the

degree of your curve over the last few years? I was once told that

one degree a year is " normal " for a major curve so if it is much more

than that, it may indicate a deteriorating situation. Again, the

mechanics of this process might be quite different for a spine

supported by instrumentation from an adolescent surgery.

I'm too am glad you found this group. They are a caring bunch of

people and will offer you support and advice as you figure out what,

if anything, you should be doing about your back. You can bet I will

be needing and asking for it as my surgery date approaches!

> Hello everyone. I am quite happy to have others to discuss my

nearly

> lifelong scoliosis problem. I am a 50 yr old female, had spinal

> fusion at the age of 15 at which time I had been in a back brace

for

> 3 years prior to surgery then spent 6 months in a body cast. They

> grafted bone from my left leg to my spine and when I was younger,

did

> not have many problems after the surgery. I have a 45 degree

curve.

> After my daughter was born, when I was 22, that is when the

problems

> really started. My biggest problem was sciatic pain in my legs,

now

> I have degenerative disc disease. For the past 3 yrs though, I

have

> put on weight, and am shrinking, also starting to hunch over. I

have

> problems standing for a long period of time and find myself hanging

> onto shopping carts, leaning against walls, anything to support

> myself. Is anyone having this problem as they get older, is there

> anything I can do for it? I am tired of going to see orthopedic

> doctors. They just xray, CT Scan and MRI me to death, it is a

wonder

> I dont glow in the dark from all the xrays I have had over the

> years. Need to talk to someone in the same situation.

June 3, 2001

Hi Bac323...

Have you seen a good scoliosis specialist for your problems? They can

be fixed, although as far as I know, only by surgery. In what area do

you live?

Regards,

June 4, 2001

I have only been to an orthopedic doctor, basically

for xrays and a referral. I know this doctor and

basically was able to go to him to get things started.

He is not the doctor for the job, but I know him and

felt comfortable enough to go to him.

I have read so much about alternative treatments and I

really don't think that they will correct the problem,

only help with pain and in some cases prevent further

curving. At this point, I have come to the

realization that I want and need more than that. My

mother is terrified that I will go forward with the

surgery, but she (thank God for her sake) does not

understand that this problem goes beyond physical.

Liz

--- Racine <lindaracine@...> wrote:

> Hi Bac323...

>

> Have you seen a good scoliosis specialist for your

> problems? They can

> be fixed, although as far as I know, only by

> surgery. In what area do

> you live?

>

> Regards,

>

=====

Have a great day!

Liz

__________________________________________________

June 4, 2001

Liz...

If you decide you want recommendations for some of the best scoliosis

specialists, just let the group know where you live. I'm sure one of us

can help.

Regards,

June 11, 2001

I also have had trouble with messenger hanging up my computer. so I

don't use it. I just come here to the group and read. It has been a

real blessing. I have found so much information, and encouragement,

and a great ranting place when I'm feeling really bad. I've learned

how " lucky " I am to have only been suffering with this for about 4

years now, and how much worse it could be for me. good luck, Janet. -

-- In achalasia@y..., Millett@W... wrote:

> Hello all,

> First, congratulations Don on the results of your surgery. It

> sounds like you are off to a good, albeit, sore start. I've been

> there and more than understand where you are coming from.

> I joined this group the other night and have spent my time so

> far printing all the emails for the months of April and May 2001.

> I've gotten through about half and am still plugging away. My

heart

> goes out to each and everyone of you. I am also an achalasia

> sufferer/survivor and veteran of 22+ years. My problems began

> shortly after I turned 18 and have been dealing with this the best

> way I can ever since.

> For this email I don't have the luxury of time to go into much

> detail over the numerous procedures and surgeries I've gone through

> but hope I can follow up later. I came across this list after

doing

> some research on the web (I hate to admit that my profession is one

> of technology and it never occured to be to take advantage of it

for

> this purpose ... dunce) and so here I am. Last night I tried out a

> few of 's health forum chat rooms in the hopes that I might

find

> someone to talk to. That didn't work so well but I could have just

> been in the wrong place, wrong time. I also noticed that from this

> sites message page there is a chat link. I wasn't successful with

it

> either (I did install messenger). It just seemed to hang up

> and I would end up having to " end task " the internet software. In

> any case, do any of you " chat online " somewhere? If yes, would

> anyone be interested in sending me or this list a message on where

to

> go?

> Thanks in advance for any help, .

June 30, 2001

In a message dated 6/30/01 7:42:34 PM Eastern Daylight Time, rvf263@... writes:

Hello everyone,I am new to the group.

Welcome rvf. You will find a lot of kind and knowledgeable people on this list. Soon you will know more about Hep C than your general practitioner. You are where many of us on this list were when we learned that we or a loved one had the virus--we just knew there must be a cure. I remember thinking my husband's specialist did not seem to be addressing his illness very aggressively. Interferon, with or without other additives, is the only game in town. My husband decided against it, because it makes many people sick and depressed (he already struggles with depression too). And a large majority of the small number of people who go into remission while on the treatment relapse when the treatment ends. The liver biospy that you are not a candidate for could tell you if your liver has any scarring or cirrhosis (it only tells you what's happening with that very tiny sliver of flesh though--it's not representative of the whole organ). There are some people who do not believe that procedure is safe anyway. There are things you can do for yourself. Stay away from all alcohol and medicines that are not liver-friendly. And some people feel that herbal supplements are helping them--like Milk Thistle and Dandillion Root, which cleanse the liver. Others on the list know a lot more about this than I do. You can also get information off the National Institutes of Health web page: www.nih.gov -- then go to NIDDK (Nat'l Inst. for Diabetes, Digestive and Kidney or something like that). Then search for Hepatitis. Hope this helps and doesn't discourage you too much. It's really not a death sentence. Do you have symptoms? like exhaustion? flu?

Tree

June 30, 2001

Hi there ,

I too am very new to all of this. I was diagnosed with Hepatitis C on June 15th, the day before my birthday. This list is kind of quiet. I've posted questions and only two people responded. I guess we are in this alone. I live in south Florida but would enjoy being e-mail pals. We could pool our information and learn together! I too used to be very heavy. If you want to talk privately I'll tell you more about that. I have found a couple of good sites that may be of help to you for info.

www.rebetron.com

www.liverfoundation.org

www.hepc-connection.org

Also go to www.beincharge.com or call 1-888-hep-2608 and get pre-registered with them. Once you start treatment they will send you a bunch of information I've been told. I just contacted them Thursday and they called me back on Friday. The lady I spoke with was very nice.

I have also called each gastroentrologist group in my town and the same two names keep coming up as being the local experts. I phoned them and they gave me the name of a support group and I have an appointment with one of their doctors. I will be attending the support group meeting in about a week.

It sounds to me like we don't have to get treatment right away so your first priority should be to get insurance. As I understand it you may have trouble if you go without for any length of time, so hurry.

Good luck and keep in touch,

Barbara

June 30, 2001

Hi tree,

thanks for the support. The only symptom that I may have is being

tired alot. But I have sleep apnea so I don't know....

> In a message dated 6/30/01 7:42:34 PM Eastern Daylight Time,

> rvf263@c... writes:

> > Hello everyone,I am new to the group.

>

> Welcome rvf. You will find a lot of kind and knowledgeable people

on this

> list. Soon you will know more about Hep C than your general

practitioner.

> You are where many of us on this list were when we learned that we

or a loved

> one had the virus--we just knew there must be a cure. I remember

thinking my

> husband's specialist did not seem to be addressing his illness very

> aggressively. Interferon, with or without other additives, is the

only game

> in town. My husband decided against it, because it makes many

people sick

> and depressed (he already struggles with depression too). And a

large

> majority of the small number of people who go into remission while

on the

> treatment relapse when the treatment ends. The liver biospy that

you are not

> a candidate for could tell you if your liver has any scarring or

cirrhosis

> (it only tells you what's happening with that very tiny sliver of

flesh

> though--it's not representative of the whole organ). There are

some people

> who do not believe that procedure is safe anyway. There are things

you can

> do for yourself. Stay away from all alcohol and medicines that are

not

> liver-friendly. And some people feel that herbal supplements are

helping

> them--like Milk Thistle and Dandillion Root, which cleanse the

liver. Others

> on the list know a lot more about this than I do. You can also get

> information off the National Institutes of Health web page:

www.nih.gov --

> then go to NIDDK (Nat'l Inst. for Diabetes, Digestive and Kidney or

something

> like that). Then search for Hepatitis. Hope this helps and

doesn't

> discourage you too much. It's really not a death sentence. Do you

have

> symptoms? like exhaustion? flu?

>

> Tree

July 1, 2001

In a message dated 6/30/01 11:36:18 PM Eastern Daylight Time, rvf263@... writes:

Hi tree,

thanks for the support. The only symptom that I may have is being tired alot. But I have sleep apnea so I don't know....

This is so strange--my husband's name is , and he has hep c, depression and sleep apnea. Now if you tell me you're 50, I'm going to think you're my husband posting from another computer! tee hee Tree

July 1, 2001

> Hello everyone,

> I am new to the group. Thanks for letting me be a member. I was

first

> diagnosed with hep-C earlier this year and was sent to a

specialist.

> When I went to see the specialist he talked to me about hep-C and

> told me about the treatments available. He told me I was too heavy

> for a biopsy because the needle would not reach the needle, and he

> said I was not a good candidate for the medicine because I was

> already suffering from depression which the hep-C medicine causes

> also. So the only thing he told me was to lose weight. I thought

this

> was kind of odd and I left there thinking...so what am I suppose to

> do? just lay down and die with this? my pcp received the letter

from

> the specialist and he went over it with me. I could not believe

what

> this so called doctor was telling me. He said there is no cure and

> the medicine they have out makes you more sick. I had enough by

then

> and asked him, " what do you expect me to do? " just die without

> treatment? and all he could say was, " calm down, you have time " I

> walked out shaking my head in disgust. Unfortunately, now I have no

> insurance so I sit here with hep-C that is not being monitored or

> treated. I am very worried right now because I donot know what my

> liver is doing, or what state it is in. Is there anyone out there

who

> has any advice on what I can do? Does anyone know how much the

> medicine costs? Does anyone know of a competant specialist in south

> eastern michigan that maybe I can go see? I'm not sure what to do

at

> this point, all I know is that I'm very scared right now.

Hi ,

My name is Jeanie, and I am the wife of a HepC patient. Ironically,

we live in Southeastern Michigan . Pat found out about his HepC a

little over 5 years ago and was referred to Dr. Duffy, in

Southfield. He has NO bedside manner at all, but does know this

particular diesase. There are other doctors at his clinic who are

also very knowledgable AND kind and caring. (Gee, I sure hope he

isn't the one you saw.) He was started on Interferon and stayed on

it for about 6 months, with no response. He then added the Rebetron,

and again did not respond, so after a year he was taken off the

drugs. Just before this past Christmas he had a liver transplant at

the U. of M. and did very well. However, he is now showing increased

levels in his liver function tests, indicating that the virus is

already attacking the new liver. As he is still being monitored by

the U. of M. his doctor there wants him to start the Interferon and

Rebetron again ... tomorrow actually. She started him on anti-

depressants two weeks ago as she said that the studies all show that

most patients handle the therapy better while on anti-depressants.

The cost of the drugs is currently about $1,400. a month (Ouch, I

know. We don't have RX coverage either.) Granted, the Interferon and

Rebetron do cause some miserable side effects, but it's the only game

in town. There are no other " medical prescriptions " available right

now. Incidentally, the Liver Clinic at U. of M. is also a

possibility you might want to consider.

I hope this helps some, . No you should not just lay down and

die. You should continue to seek someone who is willing to work with

you and monitor your condition. You should also look into the

alternative treatments that the others on the list have mentioned. I

can't remember what all Pat took, but I know he was on a lot of

herbal medications and felt that they helped him a lot ... though he

could never get any doctor to acknowledge their benefits.

Please feel free to contact me if you need any further assistance.

Jeanie

July 2, 2001

Hi, I was diagnosed in '92 & heard that I might as well carry on drinking &

that by '94 I may well have serious liver disease [50%]. Not true obviously

but it took me a lot of time to get my head round it.

Grant me the serenity to accept the things I can't change..

Courage to change the things I can..

& the Wisdom to know the difference.

I can only do my best & if that varies from time to time I'll try to work

round it, I know how much effort it takes & value it accordingly.

Nowadays they know more & I've found this site a great help. I hope to

educate people & stop this spreading while waitng for the cure.

All the best, Dave.

Re: new to group

> I'm also new to the group. I was diagnosed with Hep C 2 years

> ago...when my ex boyfriend told me he had it. My doctors don't even

> discuss it with me...which is irritating.. I am also Bipolar with

> Major Depression. My ex is in poor health anyway and they are

> telling him that he has little time left, but don't explain much to

> him. Both of us are wondering what final stages are like, since he is

> not a candiate for much of any medical treatments.

>

> I almost feel like my doctors think it will just go away or whatever.

> I am a person who has always treated medical conditions aggressively,

> and am feeling pretty lost with this one. I appreciate the web site

> and will go there...haven't gotten much from most sites I've been to.

>

> Thanks,

>

> > In a message dated 6/30/01 7:42:34 PM Eastern Daylight Time,

> > rvf263@c... writes:

> > >

> > them--like Milk Thistle and Dandillion Root, which cleanse the

> liver. Others

> > on the list know a lot more about this than I do. You can also get

> > information off the National Institutes of Health web page:

> www.nih.gov --

> > then go to NIDDK (Nat'l Inst. for Diabetes, Digestive and Kidney or

> something

> > like that). Then search for Hepatitis. Hope this helps and doesn't

> > discourage you too much. It's really not a death sentence. Do you

> have

> > symptoms? like exhaustion? flu?

> >

> > Tree

>

August 1, 2001

I don't think any of us did anything in particular

wrong to cause this disease. I think when (and if)

they ever truly find a cause it will probably be a

combination of factors i.e.; stress, nutrition,

detoxification, etc.

I am trying to explore all of these avenues by myself

because I refuse to give in to whatever the treatment

of the day seems to be. I am currently in the process

of detoxifying my body. In September I am going to

see a naturopathic doctor. I'm sick of getting more

and more drugs and feeling progressively worse all the

while.

I too ate healthy food all my life. Salads were and

still are my favorite food even though they drive me

to tears now. I've even put salad in the blender only

to find that a bowl full amounts to about a

teaspoonful when ground.

All this to say don't be too hard on yourself. I

really doubt you did anything to cause this. I just

feel that everyone has a vulnerable system in one

place or another.

Weins

--- PLFarm@... wrote:

> Hello from Northern Minnesota-I've been living with

> achalasia since

> fall of 1996. The most difficult period was the

> year between the

> onset of primary symptoms and diagnosis. As the

> problem got worse, I

> seemed to be getting no help from local doctors and

> a GI specialist

> in Duluth. Fortunately, I got a recommendation for

> a specialist in

> Minneapolis, was diagnosed on the spot, and had a

> balloon dilation

> about a month later. I can't say this procedure

> made a big

> difference in my life, other than my attitude. For

> a few weeks I

> convinced myself that it was easier to swallow.

> Eventually I

> realized that while swallowing was still difficult,

> I could manage

> the problem with some care in food selection, eating

> times, eating

> positions, etc. Also, I told myself that with the

> LES sphincter still

> tight, I wouldn't be suffering chronic heartburn.

> It sounds like I

> am fortunate compared to many others in the group.

> My weight is

> fairly stable, I keep most of my food down, and I go

> out with my

> family to occasional meals at restaurants.

> Some details of my condition: I drink large

> quantities of water (no

> ice and preferably above 50 F) with every meal. Ice

> water seems to

> close the esophagus up tight, and I can't really

> adjust to the idea

> of drinking hot water. Sometimes hot tea before a

> meal may help, but

> not for getting the food down. I only run into

> problems when I

> visit a town where the water tastes so bad that it's

> hard to drink

> (don't like chlorine). I drink some other fluids,

> but juices with

> pulp can be difficult, and carbonated beverages are

> almost impossible

> (I do miss beer!). I noticed another member of the

> group mentioned

> that healthy foods are the hardest to eat. To some

> extent, I have

> found this to be true also. High fiber fruits and

> vegetables and

> whole grain breads give me the most trouble.

> Ironically, I am an

> organic farmer and for many years whole grain breads

> and home-grown

> vegetables, fruit, and meat were the mainstay of my

> diet. Carrots

> and apples were the first two foods to present a

> problem in the early

> stages of my condition. Today I drink lots of

> carrot/apple juice

> (washed down with water) but only occasionally eat

> raw carrots or

> apples. I eat much less bread and much more pasta,

> which I find goes

> down quite easily with some olive oil. Some stubby

> shaped pastas are

> a bit harder to eat. I eat less meat, but this is

> more related to

> the general Mediterranean diet I have adopted (makes

> me feel good and

> I love the flavors) than any difficulty in eating

> meat. I had quit

> drinking coffee altogether in the early stages when

> I first started

> having spasms. I didn't know what these were, but

> thought they were

> related to caffeine. Now, I am back to drinking a

> couple of cups of

> very strong coffee a day and frequently eat

> chocolate, which is also

> easy for me to swallow. I think the caffeine may

> actually stimulate

> the LES sphincter to open, whereas in early stages,

> I thought it

> might have been overstimulating the still

> functioning muscle and

> causing a problem. Anybody else out there have any

> thoughts on

> caffeine?

> I don't have as many spasms as I did in early

> stages. When I feel

> one coming on, I can usually ward it off by drinking

> water

> immediately. If I have to wait even a few minutes

> to get water,

> spasms will usually start in and last anywhere from

> 15 minutes to 6

> hours. I continue to drink water when this happens,

> but once the

> spasms get going, the water provides only temporary

> relief. By the

> end of a long bout, I may have consumed 2 gallons of

> water.

> I try to eat early in the evening, but this is

> difficult in the

> summer (it's light until 10pm in the summer here).

> I also try to

> keep my upper body elevated in bed. Still, food

> does migrate back up

> my esophagus and get down into my lungs, and on

> these nights I cough

> frequently and hard. Some mornings after such a

> night I run a fever

> and feel like I have the flu and can't get much work

> done for half a

> day.

> I find that in general I am less productive than I

> used to be because

> of the change in my sleep habits. I used to get by

> on 3-4 hours of

> very sound sleep and rise by 5am, but now my sleep

> is interrupted and

> I require much more sleep. However, the biggest

> impact on me has been

> emotional/psychological. I have always loved to eat

> good food and

> lots of it. I grew up with a " clean the plate "

> ethic, which

> obviously doesn't work well now. As a young man, I

> used to pride

> myself on how much and how fast I could eat and

> drink and often won

> eating or drinking contests competing with men who

> outweighed me by

> as much as 250 lbs. Sometimes I wonder if this

> overeating caused the

> condition to develop. At other times I wonder about

> my heavy use of

> caffeine or possible chemical exposure years before

> I started farming

> organically. It's hard to escape the feeling that

> despite all the

> precautions I have taken in the last 20 years about

> eating well and

> living chemical free, I must have done something

> wrong to end up with

> this condition. Still, I have much to be thankful

> for:drug and

> chemical free living, a loving family, meaningful

> work, and excellent

> health aside from the achalasia. Sorry this posting

> is so long, but

> it's my first opportunity to pass some of these

> thoughts on to others

> who might understand.

> from Park Lake in Minnesota.

>

__________________________________________________

August 2, 2001

Welcome to the group . So much of what you've said is so familiar. Fresh fruits & vegetables for me are very difficult to get down. You mentioned carrots and apple juice ... a colleague of mine has offered to loan me his juicer to try. He has given me some food for thought (what a phrase) on his lifestyle. He has studied Yoga for more than the 20 years that I've known him and is a vegetarian. Although I have always been a "healthy" eater this disease does tend to hinder the way we would normally eat many foods.

You asked about others thoughts on caffeine and there are times when I find this so confusing. This in particular I've been told can stimulate the LES in being less resistant to food and pressure therefore opening easier. I have had so many endoscopies over the years and have been told that what is "normal" for me is a very tight sphincter. On the other hand, this year since January, I've had many problems and have had to go to the ER. Just since then I've had 4 endoscopies, 1 manametry (a dozen other tests to rule out other possible problems), ... I've lost track. In any case, 2 of the scope procedures showed the LES very tight and therefore caffeine should not be a problem. The other 2 times the LES was considered a normal opening size but I also was suffering from severe gastritis and the first time had an ulcer at the sphincter and 2 weeks ago the Dr found 3 ulcers. Now I'm on a strict diet (cardboard and liquefied cardboard) and I've had to eliminate all caffeine. What caffeine also does is stimulate the stomach to produce more acid and if your LES is open you can suffer from reflux. What a tightrope to walk. Too tight or not too tight. That's the question. I don't mean to sound flip but b-bopping back and forth ... this is new for me and well I tend to lean on the humor side. What else can you do.

For anyone else who may suffer from reflux or gastritis, whether occasional or frequently, this Dr I'm seeing now has told me to also eliminate Mint and chewing bubble gum. 22 years into this and this is the first time I ever heard this. Apparently mint stimulates stomach acid just like caffeine. I even had to change my toothpaste (at least until the ulcers are healed). As for chewing bubble gum, the theory on that is the brain is telling the stomach that food is coming...no food comes but the stomach produces acid just the same. I always loved chewing gum but since the onset of this disease have never been able to chew for more than 10 minutes or so. Swallowing saliva gets difficult and if I don't stop soon enough I end up with hiccups. Now I have a question, has anyone heard this same stuff about mint and gum? I'm still getting used to this Dr but after all these years thought I knew just about all I needed on what I should and shouldn't put in my mouth. Go figure. :-)

.

new to group

Hello from Northern Minnesota-I've been living with achalasia since fall of 1996. The most difficult period was the year between the onset of primary symptoms and diagnosis. As the problem got worse, I seemed to be getting no help from local doctors and a GI specialist in Duluth. Fortunately, I got a recommendation for a specialist in Minneapolis, was diagnosed on the spot, and had a balloon dilation about a month later. I can't say this procedure made a big difference in my life, other than my attitude. For a few weeks I convinced myself that it was easier to swallow. Eventually I realized that while swallowing was still difficult, I could manage the problem with some care in food selection, eating times, eating positions, etc. Also, I told myself that with the LES sphincter still tight, I wouldn't be suffering chronic heartburn. It sounds like I am fortunate compared to many others in the group. My weight is fairly stable, I keep most of my food down, and I go out with my family to occasional meals at restaurants. Some details of my condition: I drink large quantities of water (no ice and preferably above 50 F) with every meal. Ice water seems to close the esophagus up tight, and I can't really adjust to the idea of drinking hot water. Sometimes hot tea before a meal may help, but not for getting the food down. I only run into problems when I visit a town where the water tastes so bad that it's hard to drink (don't like chlorine). I drink some other fluids, but juices with pulp can be difficult, and carbonated beverages are almost impossible (I do miss beer!). I noticed another member of the group mentioned that healthy foods are the hardest to eat. To some extent, I have found this to be true also. High fiber fruits and vegetables and whole grain breads give me the most trouble. Ironically, I am an organic farmer and for many years whole grain breads and home-grown vegetables, fruit, and meat were the mainstay of my diet. Carrots and apples were the first two foods to present a problem in the early stages of my condition. Today I drink lots of carrot/apple juice (washed down with water) but only occasionally eat raw carrots or apples. I eat much less bread and much more pasta, which I find goes down quite easily with some olive oil. Some stubby shaped pastas are a bit harder to eat. I eat less meat, but this is more related to the general Mediterranean diet I have adopted (makes me feel good and I love the flavors) than any difficulty in eating meat. I had quit drinking coffee altogether in the early stages when I first started having spasms. I didn't know what these were, but thought they were related to caffeine. Now, I am back to drinking a couple of cups of very strong coffee a day and frequently eat chocolate, which is also easy for me to swallow. I think the caffeine may actually stimulate the LES sphincter to open, whereas in early stages, I thought it might have been overstimulating the still functioning muscle and causing a problem. Anybody else out there have any thoughts on caffeine?I don't have as many spasms as I did in early stages. When I feel one coming on, I can usually ward it off by drinking water immediately. If I have to wait even a few minutes to get water, spasms will usually start in and last anywhere from 15 minutes to 6 hours. I continue to drink water when this happens, but once the spasms get going, the water provides only temporary relief. By the end of a long bout, I may have consumed 2 gallons of water. I try to eat early in the evening, but this is difficult in the summer (it's light until 10pm in the summer here). I also try to keep my upper body elevated in bed. Still, food does migrate back up my esophagus and get down into my lungs, and on these nights I cough frequently and hard. Some mornings after such a night I run a fever and feel like I have the flu and can't get much work done for half a day. I find that in general I am less productive than I used to be because of the change in my sleep habits. I used to get by on 3-4 hours of very sound sleep and rise by 5am, but now my sleep is interrupted and I require much more sleep. However, the biggest impact on me has been emotional/psychological. I have always loved to eat good food and lots of it. I grew up with a "clean the plate" ethic, which obviously doesn't work well now. As a young man, I used to pride myself on how much and how fast I could eat and drink and often won eating or drinking contests competing with men who outweighed me by as much as 250 lbs. Sometimes I wonder if this overeating caused the condition to develop. At other times I wonder about my heavy use of caffeine or possible chemical exposure years before I started farming organically. It's hard to escape the feeling that despite all the precautions I have taken in the last 20 years about eating well and living chemical free, I must have done something wrong to end up with this condition. Still, I have much to be thankful for:drug and chemical free living, a loving family, meaningful work, and excellent health aside from the achalasia. Sorry this posting is so long, but it's my first opportunity to pass some of these thoughts on to others who might understand. from Park Lake in Minnesota.

August 2, 2001

I've never heard about the chewing gum before, but

when I had an ulcer the doctor did tell me not to eat

mint of any kind because it was very bad for the

ulcer. He did not elaborate, but I got the point.

Weins

--- " A. & Mark S. Millett "

<Millett@...> wrote:

> Welcome to the group . So much of what you've

> said is so familiar. Fresh fruits & vegetables for

> me are very difficult to get down. You mentioned

> carrots and apple juice ... a colleague of mine has

> offered to loan me his juicer to try. He has given

> me some food for thought (what a phrase) on his

> lifestyle. He has studied Yoga for more than the 20

> years that I've known him and is a vegetarian.

> Although I have always been a " healthy " eater this

> disease does tend to hinder the way we would

> normally eat many foods.

>

> You asked about others thoughts on caffeine and

> there are times when I find this so confusing. This

> in particular I've been told can stimulate the LES

> in being less resistant to food and pressure

> therefore opening easier. I have had so many

> endoscopies over the years and have been told that

> what is " normal " for me is a very tight sphincter.

> On the other hand, this year since January, I've had

> many problems and have had to go to the ER. Just

> since then I've had 4 endoscopies, 1 manametry (a

> dozen other tests to rule out other possible

> problems), ... I've lost track. In any case, 2 of

> the scope procedures showed the LES very tight and

> therefore caffeine should not be a problem. The

> other 2 times the LES was considered a normal

> opening size but I also was suffering from severe

> gastritis and the first time had an ulcer at the

> sphincter and 2 weeks ago the Dr found 3 ulcers.

> Now I'm on a strict diet (cardboard and liquefied

> cardboard) and I've had to eliminate all caffeine.

> What caffeine also does is stimulate the stomach to

> produce more acid and if your LES is open you can

> suffer from reflux. What a tightrope to walk. Too

> tight or not too tight. That's the question. I

> don't mean to sound flip but b-bopping back and

> forth ... this is new for me and well I tend to lean

> on the humor side. What else can you do.

>

> For anyone else who may suffer from reflux or

> gastritis, whether occasional or frequently, this Dr

> I'm seeing now has told me to also eliminate Mint

> and chewing bubble gum. 22 years into this and this

> is the first time I ever heard this. Apparently

> mint stimulates stomach acid just like caffeine. I

> even had to change my toothpaste (at least until the

> ulcers are healed). As for chewing bubble gum, the

> theory on that is the brain is telling the stomach

> that food is coming...no food comes but the stomach

> produces acid just the same. I always loved chewing

> gum but since the onset of this disease have never

> been able to chew for more than 10 minutes or so.

> Swallowing saliva gets difficult and if I don't stop

> soon enough I end up with hiccups. Now I have a

> question, has anyone heard this same stuff about

> mint and gum? I'm still getting used to this Dr but

> after all these years thought I knew just about all

> I needed on what I should and shouldn't put in my

> mouth. Go figure. :-)

>

> .

> new to group

>

> Hello from Northern Minnesota-I've been living

> with achalasia since

> fall of 1996. The most difficult period was the

> year between the

> onset of primary symptoms and diagnosis. As the

> problem got worse, I

> seemed to be getting no help from local doctors

> and a GI specialist

> in Duluth. Fortunately, I got a recommendation

> for a specialist in

> Minneapolis, was diagnosed on the spot, and had a

> balloon dilation

> about a month later. I can't say this procedure

> made a big

> difference in my life, other than my attitude.

> For a few weeks I

> convinced myself that it was easier to swallow.

> Eventually I

> realized that while swallowing was still

> difficult, I could manage

> the problem with some care in food selection,

> eating times, eating

> positions, etc. Also, I told myself that with the

> LES sphincter still

> tight, I wouldn't be suffering chronic heartburn.

> It sounds like I

> am fortunate compared to many others in the group.

> My weight is

> fairly stable, I keep most of my food down, and I

> go out with my

> family to occasional meals at restaurants.

> Some details of my condition: I drink large

> quantities of water (no

> ice and preferably above 50 F) with every meal.

> Ice water seems to

> close the esophagus up tight, and I can't really

> adjust to the idea

> of drinking hot water. Sometimes hot tea before a

> meal may help, but

> not for getting the food down. I only run into

> problems when I

> visit a town where the water tastes so bad that

> it's hard to drink

> (don't like chlorine). I drink some other fluids,

> but juices with

> pulp can be difficult, and carbonated beverages

> are almost impossible

> (I do miss beer!). I noticed another member of

> the group mentioned

> that healthy foods are the hardest to eat. To

> some extent, I have

> found this to be true also. High fiber fruits and

> vegetables and

> whole grain breads give me the most trouble.

> Ironically, I am an

> organic farmer and for many years whole grain

> breads and home-grown

> vegetables, fruit, and meat were the mainstay of

> my diet. Carrots

> and apples were the first two foods to present a

> problem in the early

> stages of my condition. Today I drink lots of

> carrot/apple juice

> (washed down with water) but only occasionally eat

> raw carrots or

> apples. I eat much less bread and much more

> pasta, which I find goes

> down quite easily with some olive oil. Some stubby

> shaped pastas are

> a bit harder to eat. I eat less meat, but this

> is more related to

> the general Mediterranean diet I have adopted

> (makes me feel good and

> I love the flavors) than any difficulty in eating

> meat. I had quit

> drinking coffee altogether in the early stages

> when I first started

> having spasms. I didn't know what these were, but

> thought they were

> related to caffeine. Now, I am back to drinking a

> couple of cups of

> very strong coffee a day and frequently eat

> chocolate, which is also

> easy for me to swallow. I think the caffeine may

> actually stimulate

> the LES sphincter to open, whereas in early

> stages, I thought it

> might have been overstimulating the still

> functioning muscle and

> causing a problem. Anybody else out there have any

> thoughts on

> caffeine?

> I don't have as many spasms as I did in early

> stages. When I feel

> one coming on, I can usually ward it off by

> drinking water

> immediately. If I have to wait even a few minutes

> to get water,

> spasms will usually start in and last anywhere

> from 15 minutes to 6

> hours. I continue to drink water when this

> happens, but once the

> spasms get going, the water provides only

> temporary relief. By the

> end of a long bout, I may have consumed 2 gallons

> of water.

> I try to eat early in the evening, but this is

> difficult in the

> summer (it's light until 10pm in the summer here).

> I also try to

> keep my upper body elevated in bed. Still, food

> does migrate back up

> my esophagus and get down into my lungs, and on

> these nights I cough

> frequently and hard. Some mornings after such a

> night I run a fever

> and feel like I have the flu and can't get much

> work done for half a

> day.

> I find that in general I am less productive than I

> used to be because

> of the change in my sleep habits. I used to get by

> on 3-4 hours of

> very sound sleep and rise by 5am, but now my sleep

> is interrupted and

> I require much more sleep. However, the biggest

> impact on me has been

> emotional/psychological. I have always loved to

> eat good food and

> lots of it. I grew up with a " clean the plate "

> ethic, which

> obviously doesn't work well now. As a young man,

> I

=== message truncated ===

__________________________________________________

August 2, 2001

I've never heard about the chewing gum before, but

when I had an ulcer the doctor did tell me not to eat

mint of any kind because it was very bad for the

ulcer. He did not elaborate, but I got the point.

Weins

--- " A. & Mark S. Millett "

<Millett@...> wrote:

> Welcome to the group . So much of what you've

> said is so familiar. Fresh fruits & vegetables for

> me are very difficult to get down. You mentioned

> carrots and apple juice ... a colleague of mine has

> offered to loan me his juicer to try. He has given

> me some food for thought (what a phrase) on his

> lifestyle. He has studied Yoga for more than the 20

> years that I've known him and is a vegetarian.

> Although I have always been a " healthy " eater this

> disease does tend to hinder the way we would

> normally eat many foods.

>

> You asked about others thoughts on caffeine and

> there are times when I find this so confusing. This

> in particular I've been told can stimulate the LES

> in being less resistant to food and pressure

> therefore opening easier. I have had so many

> endoscopies over the years and have been told that

> what is " normal " for me is a very tight sphincter.

> On the other hand, this year since January, I've had

> many problems and have had to go to the ER. Just

> since then I've had 4 endoscopies, 1 manametry (a

> dozen other tests to rule out other possible

> problems), ... I've lost track. In any case, 2 of

> the scope procedures showed the LES very tight and

> therefore caffeine should not be a problem. The

> other 2 times the LES was considered a normal

> opening size but I also was suffering from severe

> gastritis and the first time had an ulcer at the

> sphincter and 2 weeks ago the Dr found 3 ulcers.

> Now I'm on a strict diet (cardboard and liquefied

> cardboard) and I've had to eliminate all caffeine.

> What caffeine also does is stimulate the stomach to

> produce more acid and if your LES is open you can

> suffer from reflux. What a tightrope to walk. Too

> tight or not too tight. That's the question. I

> don't mean to sound flip but b-bopping back and

> forth ... this is new for me and well I tend to lean

> on the humor side. What else can you do.

>

> For anyone else who may suffer from reflux or

> gastritis, whether occasional or frequently, this Dr

> I'm seeing now has told me to also eliminate Mint

> and chewing bubble gum. 22 years into this and this

> is the first time I ever heard this. Apparently

> mint stimulates stomach acid just like caffeine. I

> even had to change my toothpaste (at least until the

> ulcers are healed). As for chewing bubble gum, the

> theory on that is the brain is telling the stomach

> that food is coming...no food comes but the stomach

> produces acid just the same. I always loved chewing

> gum but since the onset of this disease have never

> been able to chew for more than 10 minutes or so.

> Swallowing saliva gets difficult and if I don't stop

> soon enough I end up with hiccups. Now I have a

> question, has anyone heard this same stuff about

> mint and gum? I'm still getting used to this Dr but

> after all these years thought I knew just about all

> I needed on what I should and shouldn't put in my

> mouth. Go figure. :-)

>

> .

> new to group

>

> Hello from Northern Minnesota-I've been living

> with achalasia since

> fall of 1996. The most difficult period was the

> year between the

> onset of primary symptoms and diagnosis. As the

> problem got worse, I

> seemed to be getting no help from local doctors

> and a GI specialist

> in Duluth. Fortunately, I got a recommendation

> for a specialist in

> Minneapolis, was diagnosed on the spot, and had a

> balloon dilation

> about a month later. I can't say this procedure

> made a big

> difference in my life, other than my attitude.

> For a few weeks I

> convinced myself that it was easier to swallow.

> Eventually I

> realized that while swallowing was still

> difficult, I could manage

> the problem with some care in food selection,

> eating times, eating

> positions, etc. Also, I told myself that with the

> LES sphincter still

> tight, I wouldn't be suffering chronic heartburn.

> It sounds like I

> am fortunate compared to many others in the group.

> My weight is

> fairly stable, I keep most of my food down, and I

> go out with my

> family to occasional meals at restaurants.

> Some details of my condition: I drink large

> quantities of water (no

> ice and preferably above 50 F) with every meal.

> Ice water seems to

> close the esophagus up tight, and I can't really

> adjust to the idea

> of drinking hot water. Sometimes hot tea before a

> meal may help, but

> not for getting the food down. I only run into

> problems when I

> visit a town where the water tastes so bad that

> it's hard to drink

> (don't like chlorine). I drink some other fluids,

> but juices with

> pulp can be difficult, and carbonated beverages

> are almost impossible

> (I do miss beer!). I noticed another member of

> the group mentioned

> that healthy foods are the hardest to eat. To

> some extent, I have

> found this to be true also. High fiber fruits and

> vegetables and

> whole grain breads give me the most trouble.

> Ironically, I am an

> organic farmer and for many years whole grain

> breads and home-grown

> vegetables, fruit, and meat were the mainstay of

> my diet. Carrots

> and apples were the first two foods to present a

> problem in the early

> stages of my condition. Today I drink lots of

> carrot/apple juice

> (washed down with water) but only occasionally eat

> raw carrots or

> apples. I eat much less bread and much more

> pasta, which I find goes

> down quite easily with some olive oil. Some stubby

> shaped pastas are

> a bit harder to eat. I eat less meat, but this

> is more related to

> the general Mediterranean diet I have adopted

> (makes me feel good and

> I love the flavors) than any difficulty in eating

> meat. I had quit

> drinking coffee altogether in the early stages

> when I first started

> having spasms. I didn't know what these were, but

> thought they were

> related to caffeine. Now, I am back to drinking a

> couple of cups of

> very strong coffee a day and frequently eat

> chocolate, which is also

> easy for me to swallow. I think the caffeine may

> actually stimulate

> the LES sphincter to open, whereas in early

> stages, I thought it

> might have been overstimulating the still

> functioning muscle and

> causing a problem. Anybody else out there have any

> thoughts on

> caffeine?

> I don't have as many spasms as I did in early

> stages. When I feel

> one coming on, I can usually ward it off by

> drinking water

> immediately. If I have to wait even a few minutes

> to get water,

> spasms will usually start in and last anywhere

> from 15 minutes to 6

> hours. I continue to drink water when this

> happens, but once the

> spasms get going, the water provides only

> temporary relief. By the

> end of a long bout, I may have consumed 2 gallons

> of water.

> I try to eat early in the evening, but this is

> difficult in the

> summer (it's light until 10pm in the summer here).

> I also try to

> keep my upper body elevated in bed. Still, food

> does migrate back up

> my esophagus and get down into my lungs, and on

> these nights I cough

> frequently and hard. Some mornings after such a

> night I run a fever

> and feel like I have the flu and can't get much

> work done for half a

> day.

> I find that in general I am less productive than I

> used to be because

> of the change in my sleep habits. I used to get by

> on 3-4 hours of

> very sound sleep and rise by 5am, but now my sleep

> is interrupted and

> I require much more sleep. However, the biggest

> impact on me has been

> emotional/psychological. I have always loved to

> eat good food and

> lots of it. I grew up with a " clean the plate "

> ethic, which

> obviously doesn't work well now. As a young man,

> I

=== message truncated ===

__________________________________________________

August 2, 2001

Hi ,

What you say is so familiar to me! I think we have pretty much the

same symptoms. I also can get food down (albeit with great

difficulty) with the help of great quantities of lukewarm water and

even eat out at restaurants once in a while (I ask for water no ice

in a pitcher or carafe if possible and also am starting to carry my

own to suppliment). Its embarassing and uncomfortable and I usually

have to bring 1/2 of my meal home in a box because I can't get it

down (how much can someone eat while drinking a liter and a half of

water with a meal?)

I don't get spasms much anymore and I never got heartburn (although

before my diagnosis people had convinced me that the spasms were

heartburn when they were not).

I should try the tea - that sounds like a good idea. I drink a

cappuccino most mornings and it goes down fairly well (water still

needed, of course). And I also am not drinking soda because it

doesn't go down well at all.

I've tried juices and they are sometimes OK and sometimes not - it

seems like I just don't want to drink them even if they go down.

Like has been reported on this group and in your message, often the

best foods nutrition-wise are the hardest to eat. I'm trying to

determine if that's true for me or if its just such a chore to eat

that I gravitate toward the quick and easy foods that aren't as good

for me.

I get about 7 to 7.5 hours sleep nightly and often wake up two or

three times due to achalasia - coughing and stuff. Most days I feel

completely unrested. On Sundays I am so tired I usually can't do

anything - perhaps I am " catching up. "

Thanks for posting you experience, !

(a fellow mid-westerner in Madison, Wisconsin)

> Hello from Northern Minnesota-I've been living with achalasia since

> fall of 1996. The most difficult period was the year between the

> onset of primary symptoms and diagnosis. As the problem got worse,

I

> seemed to be getting no help from local doctors and a GI specialist

> in Duluth. Fortunately, I got a recommendation for a specialist in

> Minneapolis, was diagnosed on the spot, and had a balloon dilation

> about a month later. I can't say this procedure made a big

> difference in my life, other than my attitude. For a few weeks I

> convinced myself that it was easier to swallow. Eventually I

> realized that while swallowing was still difficult, I could manage

> the problem with some care in food selection, eating times, eating

> positions, etc. Also, I told myself that with the LES sphincter

still

> tight, I wouldn't be suffering chronic heartburn. It sounds like

I

> am fortunate compared to many others in the group. My weight is

> fairly stable, I keep most of my food down, and I go out with my

> family to occasional meals at restaurants.

> Some details of my condition: I drink large quantities of water (no

> ice and preferably above 50 F) with every meal. Ice water seems to

> close the esophagus up tight, and I can't really adjust to the idea

> of drinking hot water. Sometimes hot tea before a meal may help,

but

> not for getting the food down. I only run into problems when I

> visit a town where the water tastes so bad that it's hard to drink

> (don't like chlorine). I drink some other fluids, but juices with

> pulp can be difficult, and carbonated beverages are almost

impossible

> (I do miss beer!). I noticed another member of the group mentioned

> that healthy foods are the hardest to eat. To some extent, I have

> found this to be true also. High fiber fruits and vegetables and

> whole grain breads give me the most trouble. Ironically, I am an

> organic farmer and for many years whole grain breads and home-grown

> vegetables, fruit, and meat were the mainstay of my diet. Carrots

> and apples were the first two foods to present a problem in the

early

> stages of my condition. Today I drink lots of carrot/apple juice

> (washed down with water) but only occasionally eat raw carrots or

> apples. I eat much less bread and much more pasta, which I find

goes

> down quite easily with some olive oil. Some stubby shaped pastas

are

> a bit harder to eat. I eat less meat, but this is more related to

> the general Mediterranean diet I have adopted (makes me feel good

and

> I love the flavors) than any difficulty in eating meat. I had quit

> drinking coffee altogether in the early stages when I first started

> having spasms. I didn't know what these were, but thought they

were

> related to caffeine. Now, I am back to drinking a couple of cups

of

> very strong coffee a day and frequently eat chocolate, which is

also

> easy for me to swallow. I think the caffeine may actually

stimulate

> the LES sphincter to open, whereas in early stages, I thought it

> might have been overstimulating the still functioning muscle and

> causing a problem. Anybody else out there have any thoughts on

> caffeine?

> I don't have as many spasms as I did in early stages. When I feel

> one coming on, I can usually ward it off by drinking water

> immediately. If I have to wait even a few minutes to get water,

> spasms will usually start in and last anywhere from 15 minutes to 6

> hours. I continue to drink water when this happens, but once the

> spasms get going, the water provides only temporary relief. By the

> end of a long bout, I may have consumed 2 gallons of water.

> I try to eat early in the evening, but this is difficult in the

> summer (it's light until 10pm in the summer here). I also try to

> keep my upper body elevated in bed. Still, food does migrate back

up

> my esophagus and get down into my lungs, and on these nights I

cough

> frequently and hard. Some mornings after such a night I run a

fever

> and feel like I have the flu and can't get much work done for half

a

> day.

> I find that in general I am less productive than I used to be

because

> of the change in my sleep habits. I used to get by on 3-4 hours of

> very sound sleep and rise by 5am, but now my sleep is interrupted

and

> I require much more sleep. However, the biggest impact on me has

been

> emotional/psychological. I have always loved to eat good food and

> lots of it. I grew up with a " clean the plate " ethic, which

> obviously doesn't work well now. As a young man, I used to pride

> myself on how much and how fast I could eat and drink and often won

> eating or drinking contests competing with men who outweighed me by

> as much as 250 lbs. Sometimes I wonder if this overeating caused

the

> condition to develop. At other times I wonder about my heavy use

of

> caffeine or possible chemical exposure years before I started

farming

> organically. It's hard to escape the feeling that despite all the

> precautions I have taken in the last 20 years about eating well and

> living chemical free, I must have done something wrong to end up

with

> this condition. Still, I have much to be thankful for:drug and

> chemical free living, a loving family, meaningful work, and

excellent

> health aside from the achalasia. Sorry this posting is so long,

but

> it's my first opportunity to pass some of these thoughts on to

others

> who might understand.

> from Park Lake in Minnesota.

August 2, 2001

in Minnesota,

I think that was me who said I have the most trouble with healthy food --

carrots and apples are impossible! Funny, but I find chocolate easy to swallow,

too. Must be the fat that makes it slide down easy.

a

August 3, 2001

Hi, it was interesting to read your story. I don't eat meat but have lived a

fairly healthy live style for the last many years.

I had my operation 3 weeks ago and have been living on organic foods since

then. Thankfully I can eat a lot of things now and am very glad I had it

done. My body doesn't like dairy much except for natural yogurt so I eat a

lot of soy products.

As for caffine I haven't tried coffee or tea yet but I did have hot

chocolate tonight (organic) which went down very well. I stopped drinking

coffee a couple of years ago as I thought that was what was giving me bad

heartburn, as soon as I stopped the symptons eased up, but I continued to

drink tea (hot) with no bad effects. My spasms started about that time so

I'm not sure if there is a connection. I will probably try tea and coffee in

the next few weeks but it's been 8 months since I had any that stayed down

so I've no idea how it will affect me.

I'm also looking forward to that first beer but again it's been so long

since I had any that a little's going to go a long way, not sure that I can

even drink it!!

Good luck.

new to group

> Hello from Northern Minnesota-I've been living with achalasia since

> fall of 1996. The most difficult period was the year between the

> onset of primary symptoms and diagnosis. As the problem got worse, I