Recovery

[Guest guest]

Regarding this subject below. Judith, I do know that you feel that it was not

recogniziing your limitations that lead to your deterioration. I am not saying

that it isn't. However, many of the

nationally recognized and respected CFS physicians do not feel t hat they know

the answer to this question. And at the last AACFS meeting Bell or sen ( I

forget which one) said that he

thought that if a PWC did some activity that lead to a relapse, he thought that

was fine - what was important was to realise that the activity would have that

effect and be ready to accept it. So

perhaps you are saying that although you would push and then use the weekends to

recover, that you feel that you did not realise when you were going to far and

not really recovering.

I think it is a tough call - that issue and one that perhpas each of us have to

sort out for ourselves, what the balance is between activity that leads to

relaspse and not engaging in that activity

and know what it is day to day. I don't really knwo what my limitations are

day-to-day. That is because they fluctuate so much. One day I am done in for

two days if I walk for 20 minutes,

thenext week, I can walk for 20 min, pllus do more. So I think it is a tough

issue, and will remain one, and it is really not the sort of detail we can

expect from physicians. I think we are

fooling ourselves if we think that we can be that well monitored by physicians.

Atleaast that is my experience. I see my doctor once a month, and we have a

whole lot to cover - we never really

get to that level of things, and then I know more than she does.

Joyce Goodlatte

Message: 6

Date: Wed, 21 Feb 2001 07:02:45 -0500

From: Judith F Wisdom <judithwisdom@...>

Subject: C. - Question regarding your recovery.

I firmly believe that length of illness is a BIG factor in

recoverability, due to the undermining cascading of metabolic problems

over the longer time. I think that's been held up in the pitifully poor

and unscientific data we have. In sum, the same protocol I would wager

would be far less effective in a l5 year person over a 7 or 5 year

person.

That study that still hasn't been done (criminally not been done) would

also reveal which pattern of symptoms is most likely to respond to

treatment and thus recovery.

One bit of data (a sample of one!) is me. Four years into the illness I

had an enormously wonderous remission. Not well enuf to return to school

and work but from bedridden to driving, shopping, going out , even taking

the train to NYC from Philly for a whole day!!!! However, my doc didn't

counsel me re that I might not be fully recovered from whatever this

illness is fundamentally. So after a year or so doing so well I returned

to my doctoral research. And I then started writing a grant proposal and

got sucked into more and more on that. Soon I found myself needing to

stay in bed all weekend to function during the week. I ignored it. He

never closely questioned me to see if there was any retrenchment. After

a while it got worse and worse. And I got a bad 3-week flu.

Goodbye to all the progress. Bedridden again for over a year or more,

and since then with ups and downs the secular trend tells me that I shall

never again have the chance for such a remission and possibly recovery.

And tha't s not depression. I'm just compressing lots of details and

self-knowledge re this illness. I think had more care been taken during

that remission and then the whole abx thing been known I might well have

recovered at the time. Truly.

In fact, during that period I developed a bladder infection l. Was given

Bactrim. I noticed and thought I was hallucinating at first, that I was

bounding up the stairs in my house. My muscle pain and fatigue had fled.

I told my doc. He put me back on the Bactrim (this is a horrid story)

and I felt sick and he took me off. And he knew about herxing, but from

yeast treatment and never considered that might have been happening.

So I do think length of illness must be factored in, beyond treatment.

I wish it weren't true.

I wish someone could argue with me on this. I'd love to lose.

Judith Wisdom

[Guest guest]

Various posts have discussed the role of recovery in powerlifting at a

general level. Other than massage (including any soft tissue

therapy),hot/cold contrast baths, or any other kind of baths (steam, salt,

etc...) what are some other active recovery methods that can be used with

other sports such as soccer, basketball, or even baseball for example? In

the US many developing athletes are unfortunately competing year round with

both a high school sport, club sport, and any additional activities. With

time being so limited recovery is a critical requirement for an athlete's

success. Any thoughts?

Boone

[Guest guest]

I agree with you that the longterm aspects of the illness needs much more

research. Cheneys postulation that it occurs in different stages is

certainly evidence for that

One thing I get is how different and bizarre this illness is for each of us.

I've had CFS for over 20 years now. I've never had a real relapse just

very (very) slow but somewhat steady progress. WHile my energy has improved

quite a bit I have come down with a crippling case of chemical

sensitivities.

I wish you the best

>From: Joyce Goodlatte <jgoodlatte@...>

>Reply-

>

>Subject: Re: Recovery

>Date: Thu, 06 Jan 2000 15:13:17 -0600

>

>Regarding this subject below. Judith, I do know that you feel that it

>was not recogniziing your limitations that lead to your deterioration. I

>am not saying that it isn't. However, many of the

>nationally recognized and respected CFS physicians do not feel t hat they

>know the answer to this question. And at the last AACFS meeting Bell or

>sen ( I forget which one) said that he

>thought that if a PWC did some activity that lead to a relapse, he thought

>that was fine - what was important was to realise that the activity would

>have that effect and be ready to accept it. So

>perhaps you are saying that although you would push and then use the

>weekends to recover, that you feel that you did not realise when you were

>going to far and not really recovering.

>

>I think it is a tough call - that issue and one that perhpas each of us

>have to sort out for ourselves, what the balance is between activity that

>leads to relaspse and not engaging in that activity

>and know what it is day to day. I don't really knwo what my limitations

>are day-to-day. That is because they fluctuate so much. One day I am done

>in for two days if I walk for 20 minutes,

>thenext week, I can walk for 20 min, pllus do more. So I think it is a

>tough issue, and will remain one, and it is really not the sort of detail

>we can expect from physicians. I think we are

>fooling ourselves if we think that we can be that well monitored by

>physicians. Atleaast that is my experience. I see my doctor once a month,

>and we have a whole lot to cover - we never really

>get to that level of things, and then I know more than she does.

>Joyce Goodlatte

>

>Message: 6

> Date: Wed, 21 Feb 2001 07:02:45 -0500

> From: Judith F Wisdom <judithwisdom@...>

>Subject: C. - Question regarding your recovery.

>

>I firmly believe that length of illness is a BIG factor in

>recoverability, due to the undermining cascading of metabolic problems

>over the longer time. I think that's been held up in the pitifully poor

>and unscientific data we have. In sum, the same protocol I would wager

>would be far less effective in a l5 year person over a 7 or 5 year

>person.

>

>That study that still hasn't been done (criminally not been done) would

>also reveal which pattern of symptoms is most likely to respond to

>treatment and thus recovery.

>

>One bit of data (a sample of one!) is me. Four years into the illness I

>had an enormously wonderous remission. Not well enuf to return to school

>and work but from bedridden to driving, shopping, going out , even taking

>the train to NYC from Philly for a whole day!!!! However, my doc didn't

>counsel me re that I might not be fully recovered from whatever this

>illness is fundamentally. So after a year or so doing so well I returned

>to my doctoral research. And I then started writing a grant proposal and

>got sucked into more and more on that. Soon I found myself needing to

>stay in bed all weekend to function during the week. I ignored it. He

>never closely questioned me to see if there was any retrenchment. After

>a while it got worse and worse. And I got a bad 3-week flu.

>

>Goodbye to all the progress. Bedridden again for over a year or more,

>and since then with ups and downs the secular trend tells me that I shall

>never again have the chance for such a remission and possibly recovery.

>And tha't s not depression. I'm just compressing lots of details and

>self-knowledge re this illness. I think had more care been taken during

>that remission and then the whole abx thing been known I might well have

>recovered at the time. Truly.

>

>In fact, during that period I developed a bladder infection l. Was given

>Bactrim. I noticed and thought I was hallucinating at first, that I was

>bounding up the stairs in my house. My muscle pain and fatigue had fled.

> I told my doc. He put me back on the Bactrim (this is a horrid story)

>and I felt sick and he took me off. And he knew about herxing, but from

>yeast treatment and never considered that might have been happening.

>

>So I do think length of illness must be factored in, beyond treatment.

>

>I wish it weren't true.

>

>I wish someone could argue with me on this. I'd love to lose.

>

>Judith Wisdom

>

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Sue, even if Axxxxxxx turns out to be a good treatment for some PWCs,

my understanding is that only the bedridden or housebound will be

able to get it, at least initially. Where does that leave the rest

of us who Dr. Cheney refers to as the 'walking wounded'?

Mike C.

> Yes, I know of several who have gotten well. One was a young woman

who took

> Axxxxxxx for a couple of years. <<<snip<<<

[Guest guest]

Interesting question. Personally I have not. I'd be curious to see

what you find out. I would guess that part of " recovering " would have

to do with functioning level of the student prior to intervention. To

get other opinions you may want post of Recoveredkids list, another

groups list. Another thing you might to consider is finding out

if there are similar lists for other major methods such as

Greenspan/Floortime, TEAACH, , Son-Rise, etc. On those, I would

perhaps pose the question a little differently to those audience so

it doesn't seem like you're coming in with a AVB/ABA preference (not

to say that you are but readers might read this in your question).

Sorry to not have anything specific. Good luck.

> Has anyone heard of a child " recovering " from autism who has not

had an

> intensive ABA or AVB program?

>

> Chelly

[Guest guest]

I have heard of some high functioning recovering on the gluten-casein free diet and also on the allergy elimination treatments. These probably did have true autism but autistic like symptoms. But when what caused their autistic like symptoms were removed they functioned like any neuro-typical would. But if the things that helped them are removed the symptoms come back. That is with the diet. With allergy elimination, they were able to eat the things they were allergic too once they had been cleared. I used to be on an allergy elimination list for autism for awhile. The mother who started it has a daughter that was recovered but, if I remember correctly, her younger son was not clearing as well and she was doing some other eliminations that were a little more refined. I tried the NAET for our family but the practitioner I went to was not doing as she should and it was expensive not to be done right and the time involved with the drive and all make Evan very cranky. He would scream the entire ride home because he was so tired.

Betty

----- Original Message -----

From: autismindc1@...

Has anyone heard of a child "recovering" from autism who has not had an intensive ABA or AVB program?Chelly

[Guest guest]

We would like to try CB on a new diet ( he is high functioning) At UCLA they tried to Make him eat at the cafeteria , he wasnt allowed any food before leaving the house.

They offered their version of the foods he will eat (pizza, mac n cheese) By the time he got home he would be so hungry , he'd cram the food in his mouth , choking at times. UCLA gave up...his pediatrician said just try to slip some vitamins (liquid) in his juice box. LOL, thats the best we could arrive at, as he is a Carboholic.

CB's Granny

ps. Mommy wants to change schools again , Im so against it. You see, this is the first time my children have dealt with the schools. So every time there is a problem (he's agressive ) they believe the school is not dealing effectively with all his splinter skills causing him to be aggressive. I believe he needs ABA therapy.On a Happy note CB sang Twinkle Twinkle little star yesterday( wasnt real clear or anything, but you could tell what it was ) I was crying in the kitchen LOL,what a soppy granny I am

[Guest guest]

I am one who loves to read and learn from everyone on this list! My

son is also a carboholic. He will only eat " Fast Food " Mcs,

Taco Bell, Sonic, Pizza at CeCe's Pizza! I found a Vit. that he will

take called Gummy Vits. After years of worrying myself sick over his

Diet I finally quit worrying. The Doctor hasn't given me a reason to

worry so I stopped. But the funny thing is he will eat at School and

then come home hungry screaming for Mcs. The boy is " breaking "

us from eating out so much. Oh, I did get him to eat Spag. and Baked

Chicken here at home. But if you show him a Veg..........Oh my all

Heck breaks out!!! He is verbal and will tell you off if you try

to get him to eat it. I'm sorry that your kids want to move your

grandson to another school. Do they not understand that the more they

keep moving him around the more " confused " he'll become. My son loves

his school and his Teacher. He has been with her 3 years now and will

have her for 2 more years before he goes into Middle School. I'm

worried how he will deal with that transsion. We live in Texas and I

am pleased with what they are doing for him in our School District.

He's in 3rg Grade /Lifeskills. He is in a Regular Classroom 3 hours

everyday and is adjusting very well. His Social skills are behind but

what a big inprovement from last year. I'm not sure if these kids can

out grow Autism but I see improvements with him every day and the

faith that he will be able to care for himself as a adult. Not only

that he is doing " autistic " things less and less. Go figure!! Well I

didn't mean to go on and on but I wanted to share with you all..

Peace Jeanne

Mom to 14

9 dx/Autism

Married to My wonderful Husband for 17 years / Tim

> We would like to try CB on a new diet ( he is high functioning) At

UCLA they

> tried to Make him eat at the cafeteria , he wasnt allowed any food

before

> leaving the house.

> They offered their version of the foods he will eat (pizza,

mac n

> cheese) By the time he got home he would be so hungry , he'd cram

the food in his

> mouth , choking at times. UCLA gave up...his pediatrician said just

try to slip

> some vitamins (liquid) in his juice box. LOL, thats the best we

could arrive

> at, as he is a Carboholic.

> CB's Granny

>

> ps. Mommy wants to change schools again , Im so against it. You

see, this is

> the first time my children have dealt with the schools. So every

time there

> is a problem (he's agressive ) they believe the school is not

dealing

> effectively with all his splinter skills causing him to be

aggressive. I believe he

> needs ABA therapy.On a Happy note CB sang Twinkle Twinkle little

star yesterday(

> wasnt real clear or anything, but you could tell what it was ) I

was crying in

> the kitchen LOL,what a soppy granny I am

[Guest guest]

No, Lorna, you are not soppy. I would be bawling my head off if I was to hear Evan sing.

Betty

----- Original Message -----

From: LornaBerry@...

We would like to try CB on a new diet ( he is high functioning) At UCLA they tried to Make him eat at the cafeteria , he wasnt allowed any food before leaving the house. They offered their version of the foods he will eat (pizza, mac n cheese) By the time he got home he would be so hungry , he'd cram the food in his mouth , choking at times. UCLA gave up...his pediatrician said just try to slip some vitamins (liquid) in his juice box. LOL, thats the best we could arrive at, as he is a Carboholic. CB's Grannyps. Mommy wants to change schools again , Im so against it. You see, this is the first time my children have dealt with the schools. So every time there is a problem (he's agressive ) they believe the school is not dealing effectively with all his splinter skills causing him to be aggressive. I believe he needs ABA therapy.On a Happy note CB sang Twinkle Twinkle little star yesterday( wasnt real clear or anything, but you could tell what it was ) I was crying in the kitchen LOL,what a soppy granny I am

[Guest guest]

Pam, the ARI has surveyed more than 23,000

families about interventions, both biomed and pharmaceutical. Here is a

link to the results. http://www.autismwebsite.com/ari/treatment/form34q.htm

Clearly, chelation is #1 with diet not far behind.

From: EOHarm [mailto:EOHarm ] On Behalf Of pamelatk@...

Sent: Sunday, August 13, 2006 8:25

AM

eoharm

Subject: recovery

I am wondering if those of you out there who have children who have

improved dramatically on chelation or other elements of the DAN protocol would

share what has worked for your child. There are a lot of biomedical treatments

and it is very confusing. Many practitioners make a lot of money selling

us " cures. " I am most interested in hearing from parents, not

Drs who tell me about their success stories and then try to sell me their

treatment. I am skeptical.

My child improved (focus and attention wise) from B12 shots.

Thanks,

Pam

[Guest guest]

Thanks for posting that Holly! I’ve

looked at it many times before but never noticed until now, that they don’t

have anything about Valtrex or anti-virals. Also does anyone know if

MB-12 shots and spray are group in with vitamin B-12?

Pam- Here’s a recovery video also

done by Stan Kurtz on his son Ethan. There are also many MB-12 videos for

people with other chronic problems.

www.recoveryvideos.com

-

From:

EOHarm [mailto:EOHarm ] On Behalf Of Holly Bortfeld

Sent: Sunday, August 13, 2006 8:40

AM

EOHarm

Subject: RE: recovery

Pam, the ARI has surveyed more than 23,000 families about

interventions, both biomed and pharmaceutical. Here is a link to the

results. http://www.autismwebsite.com/ari/treatment/form34q.htm

Clearly, chelation is #1 with diet not far behind.

From: EOHarm [mailto:EOHarm ]

On Behalf Of pamelatkaol

Sent: Sunday, August 13, 2006 8:25

AM

eoharm

Subject: recovery

I am wondering if

those of you out there who have children who have improved dramatically on

chelation or other elements of the DAN protocol would share what has worked for

your child. There are a lot of biomedical treatments and it is very confusing.

Many practitioners make a lot of money selling us " cures. " I am

most interested in hearing from parents, not Drs who tell me about their

success stories and then try to sell me their treatment. I am skeptical.

My child improved

(focus and attention wise) from B12 shots.

Thanks,

Pam

[Guest guest]

I know the survey has been updated (it’s

now got MT promoters on it) but I will ask and report back. J

From: EOHarm [mailto:EOHarm ] On Behalf Of Chap 'n Ali

Sent: Sunday, August 13, 2006

11:21 AM

EOHarm

Subject: RE: recovery

Thanks for posting that Holly! I’ve looked at it many

times before but never noticed until now, that they don’t have anything

about Valtrex or anti-virals. Also does anyone know if MB-12 shots and

spray are group in with vitamin B-12?

Pam- Here’s a recovery video also done by Stan Kurtz on his

son Ethan. There are also many MB-12 videos for people with other chronic

problems.

www.recoveryvideos.com

-

From: EOHarm

[mailto:EOHarm ]

On Behalf Of Holly Bortfeld

Sent: Sunday, August 13, 2006 8:40

AM

EOHarm

Subject: RE: recovery

Pam, the ARI has surveyed more than 23,000 families about

interventions, both biomed and pharmaceutical. Here is a link to the

results. http://www.autismwebsite.com/ari/treatment/form34q.htm

Clearly, chelation is #1 with diet not far behind.

From: EOHarm

[mailto:EOHarm ]

On Behalf Of pamelatkaol

Sent: Sunday, August 13, 2006 8:25

AM

eoharm

Subject: recovery

I am wondering if

those of you out there who have children who have improved dramatically on

chelation or other elements of the DAN protocol would share what has worked for

your child. There are a lot of biomedical treatments and it is very

confusing. Many practitioners make a lot of money selling us

" cures. " I am most interested in hearing from parents, not Drs

who tell me about their success stories and then try to sell me their

treatment. I am skeptical.

My child improved

(focus and attention wise) from B12 shots.

Thanks,

Pam

[Guest guest]

you should go to autismmedia.org and watch the news clips on Baxter-

and then watch some of the leading biomed doctors.

[Guest guest]

From matt at the ARI…..

As of now, our ratings for B12 combine nasal and injectable

forms. Our latest analysis of the data is from February 2006. 62%

of 445 cases " Got Better " while 4% " Got Worse. "

Matt Kabler

Autism Research Institute

Holly Bortfeld

<maximom@...> wrote:

Matt, I know that the survey has been

updated with some stuff but can you answer the question below and I will report

back to the list? Thanks

Holly

From: EOHarm

[mailto:EOHarm ] On Behalf Of Chap 'n Ali

Sent: Sunday, August 13, 2006

11:21 AM

EOHarm

Subject: RE: recovery

Thanks for posting that Holly!

I’ve looked at it many times before but never noticed until now,

that they don’t have anything about Valtrex or anti-virals. Also

does anyone know if MB-12 shots and spray are group in with vitamin B-12?

-

From: EOHarm

[mailto:EOHarm ]

On Behalf Of Holly Bortfeld

Sent: Sunday, August 13, 2006 8:40

AM

EOHarm

Subject: RE: recovery

Pam, the ARI has surveyed more than

23,000 families about interventions, both biomed and pharmaceutical. Here

is a link to the results. http://www.autismwebsite.com/ari/treatment/form34q.htm

Clearly, chelation is #1 with diet not far behind.

From: EOHarm

[mailto:EOHarm ]

On Behalf Of pamelatkaol

Sent: Sunday, August 13, 2006 8:25

AM

eoharm

Subject: recovery

I am wondering if those of you out there who have children who have

improved dramatically on chelation or other elements of the DAN protocol would

share what has worked for your child. There are a lot of biomedical treatments

and it is very confusing. Many practitioners make a lot of money selling

us " cures. " I am most interested in hearing from parents, not

Drs who tell me about their success stories and then try to sell me their

treatment. I am skeptical.

My child improved (focus and attention wise) from B12 shots.

Thanks,

Pam

[Guest guest]

Thanks Holly,

I had thought the

B-12 was not MB-12 so that clears that up. I still find it interesting

that there is no category for the anti-virals when they include all of those

anti-psychotics and SSRIs. Maybe I’ll ask Stan Kurtz about

it.

Take care. -

From: EOHarm [mailto:EOHarm ] On Behalf Of Holly Bortfeld

Sent: Monday, August 14, 2006

10:09 PM

EOHarm

Subject: FW: FW: recovery

From matt at the ARI…..

As of now, our

ratings for B12 combine nasal and injectable forms. Our latest analysis

of the data is from February 2006. 62% of 445 cases " Got

Better " while 4% " Got Worse. "

Matt Kabler

Autism Research

Institute

Holly Bortfeld

<maximomadelphia (DOT) net> wrote:

Matt, I know that the survey has been updated with some stuff but

can you answer the question below and I will report back to the list?

Thanks

Holly

From: EOHarm

[mailto:EOHarm ]

On Behalf Of Chap 'n Ali

Sent: Sunday, August 13, 2006

11:21 AM

EOHarm

Subject: RE: recovery

Thanks for posting that Holly! I’ve looked at it many

times before but never noticed until now, that they don’t have anything about

Valtrex or anti-virals. Also does anyone know if MB-12 shots and spray

are group in with vitamin B-12?

-

From: EOHarm

[mailto:EOHarm ]

On Behalf Of Holly Bortfeld

Sent: Sunday, August 13, 2006 8:40

AM

EOHarm

Subject: RE: recovery

Pam, the ARI has surveyed more than 23,000 families about

interventions, both biomed and pharmaceutical. Here is a link to the

results. http://www.autismwebsite.com/ari/treatment/form34q.htm

Clearly, chelation is #1 with diet not far behind.

[Guest guest]

You are welcome. Btw, my kids both

did worse on MB12 shots. The surveys from Dr N only allow for getting

better. I had to invent the scores as I scored them for my doc. L

From:

EOHarm [mailto:EOHarm ] On Behalf Of Chap 'n Ali

Sent: Monday, August 14, 2006

10:26 PM

EOHarm

Subject: RE: FW: recovery

Thanks Holly,

I had thought the B-12 was not MB-12 so

that clears that up. I still find it interesting that there is no

category for the anti-virals when they include all of those anti-psychotics and

SSRIs. Maybe I’ll ask Stan Kurtz about it.

Take care. -

From: EOHarm [mailto:EOHarm ]

On Behalf Of Holly Bortfeld

Sent: Monday, August 14, 2006

10:09 PM

EOHarm

Subject: FW: FW: recovery

From matt at the ARI…..

As of now, our

ratings for B12 combine nasal and injectable forms. Our latest analysis

of the data is from February 2006. 62% of 445 cases " Got

Better " while 4% " Got Worse. "

[Guest guest]

Our Foundation is a nonprofit one

HHF

----- Original Message ----- From:

From: EOHarm [mailto:EOHarm ] On Behalf Of pamelatk@...Sent: Sunday, August 13, 2006 8:25 AMeoharm Subject: recovery

I am wondering if those of you out there who have children who have improved dramatically on chelation or other elements of the DAN protocol would share what has worked for your child. There are a lot of biomedical treatments and it is very confusing. Many practitioners make a lot of money selling us "cures." I am most interested in hearing from parents, not Drs who tell me about their success stories and then try to sell me their treatment. I am skeptical.

My child improved (focus and attention wise) from B12 shots.

Thanks,

Pam

[Guest guest]

I think the best place you can go to is danwebcast.com the spring and

fall 05 conferences are available as is the spring 06 conference. You

can watch, it is free. There is a lot of information, and each child

is unique in the damage they have suffered from vaccines.

My son is recovered, now age 7, diagnosed at age 4.

feel free to email me privately.

[Guest guest]

Marie McBride <magicmarieuk@...> wrote:

Tammy I certainly am a lot better since my myotomy , which I had done last September, I don't get so worried going out to eat the way I used to, In fact I just didn't eat out before, it was horrible, I used to get my small daughter to pretend she needed to go to the toilet and I would go with her so that I could bring up what was I had just struggled to eat , my stress levels where so high, I always made sure that I had an outside seat so that it was easy to slip away without to many people noticing, I was so uncomfortable. But now I can get through a meal without too much worry , I always make sure there is water available and I eat slowly, It was my husbands birthday yesterday and we went for a chinese , I managed to eat my meal without too much bother, so yes there is a definite improvement , and Im so glad that I had the surgery, I was really worried about going in to hospital and having an operation but there really was nothing to it and its the best thing I ever done, try not to worry too much about it, I remember my surgeon saying to me that I would know nothing about it, and before I knew what was happening I was back in the recovery ward feeling woozy but very happy that everything was over, and from there it could only get better

love Marie

[Guest guest]

Dear a,

I am no medical person at all and I totally sympathize with your situation. Your husband's recovery does not sound at all normal. I'm totally guessing the wrap is too tight. Really the food should be going through, at least water.

Again, I totally understand about HMO's and the financial difficulties. May I suggest though. Getting copies of whatever surgical records you can get, especially the surgical report and the barium swallows afterward.

You can then shop around. Almost all the surgeons that are mentioned here will talk to you for free for a while. You could email the tests and see what they say.

We are very popular and desired patients. We make their resumes look strong and I suspect to some extent they love to get problems from other doctors. To them we are a link in the status chain. They love to talk to us and will try to sell you on coming to them.

I worry your husband's esophagus is stretching and any further surgery could be less successful.

Yes, some myotomies are not successful, but seems like those are ones where diagnosis was very delayed or other issues.

Often surgeons suggest a dialation after a myotomy if the food isn't going down. It just sounds to me like the wrap is too tight... but totally a guess.

If you find a surgeon you like better, that seems more knowledgeable, then attack your HMO. Yes, it is difficult.But you are worrying anyway, you might as well be calling doctors.

To be honest, I haven't heard of anyone needing a feeding tube so soon after a myotomy unless they have been a long term achalasia sufferer. I don't want to suggest your surgeon doesn't know what he/she is doing, but guess I am. I'd find a second opinion.

The other possibility, is maybe that his esophagus is so stretched, it has looped over and is pushing against the sphincter area... but he would have been having trouble for a lot longer than March.

Please keep investigating. Did you contact MD in Dallas? I know some people have been happy w/ Baylor and MD in Houston? I know my old surgeon is happy to talk on the phone, Dr. Fuller in Los Angeles and I think the doctors at Cleveland will gladly speak on the phone. Suck all the information you can get out of them... have your records ready... maybe fax or email ahead, or make a summary... as short as you can.. and ask them to call you so they are informed. There are different dialations and expertise is really needed. Perhaps the myotomy wasn't long enough or the wrap just way toooo tight. I think you have reached the limits of your surgeon's expertise. Not a bad thing against him.. but you've tried all his bag of tricks.

I don't want to alarm you, but a feeding tube at this stage seems unusual and I am not really buying the swelling answer.

Again, I don't want to upset you, or critique your decisions... as Oprah says we do the best we can. But consider being more assertive in your doctors. We support you in any decision you make. Again, totally understanding the financial concerns. But honestly... I'd stay in a tent to get to an experienced achalasia surgeon and gi. Then beg one of us to stay in our garage or whatever it takes to get to a good doctor.

Sandy in So Cal.>> Good morning:> Several of you have been disappointed in your recovery times and > ability to eat etc. I can tell you a story that will make you > thankful that you are where you are. > > My husband began having problems about the first of the year. By > early March he could not seem to swallow anything and was losing > weight like crazy. We got in to a gastroenterologist as soon as > possible and had the EGD. Achalasia. Now find a surgeon. The > insurance company was no help...they could not give me any names and > even this group did not know of anyone in the Dallas/Ft Worth area. > Traveling was really not an option. So, I did find a surgeon that > the Director of Surgery at my hospital (I am a nurse) had worked with > and had treated achalasia. So far so good. Except of course he was > not on our insurance and the process for getting a waiver was a > little behind the actual surgery date. Anyway, first surgery was > delayed due to a questionable EKG which turned out to be nothing. > Next day came surgery. Heller and partial wrap. The post op > motility test showed no real passage but swelling was to blame we > thought. Three weeks or so later we were back in the hospital with > dehydration and more weight loss. Dilitation showed the area around > the surgery very swollen and tight. After discharge, about another 3-> 4 weeks later we were back in the hospital, again with dehydration. > Another dilitation and still the swelling was severe. This could > take up to six months to resolve we were told. Actually, I think my > husband has made it worse by trying to eat and drink even though > nothing is going through, the constant irritation of his putting > stuff into the esophagus and then regurgitating, but who could blame > him, he was starving and dehydrated. I lived in fear of esophageal > rupture daily.> > Next step (early July) was placement of a G-tube or a feeding tube so > that he could get nutrition and give the swelling time to heal. At > that time the surgical area was still very swollen and the area that > was easily dilated at the previous dilitation was again tight. Right > now we are waiting. Another dilitation in early August and perhaps > at six months we will have to go in and redo the wrap.> > I can just hear some of you saying we should have gone to one the THE > surgeons. But our surgeon has experience with achalasia and an > excellent reputation. He has been very knowledgeable about treatment > and options. Actually what I have found out is that 15% of the > surgeries are not successful. Looks like we will be in that 15%.> > So there has been a huge toll. He lost his job...he had just started > it a few weeks before the surgery. I worry every day about losing > our house because of all the medical bills. On just my salary I > don't see how we will ever be able to keep up. All my vacation and > sick time has been used due to his hospitalizations. Oh, and I did > not even mention the two visits to the ER for kidney stones, brought > on by dehydration.> > So, I guess, while I understand your frustration at not healing as > quickly as you had hoped, be thankful for what you do have going. It > could be worse. And I know that there are some folks out there who > have had more troubles than we have, so I am thankful that at least > now he is not dehydrated and on a manic quest for something to drink > that will quench his thirst. > > Sorry, this is long and sounds like poor pitiful me, but I am feeling > frustrated today, maybe more than usual.> paula>

[Guest guest]

a,Go ahead and feal frustrated there is no need to apologize for your feelings. You have them and you share them that's what this is for. I for one am glad you shared because it gives me the opertunity to send prayers to you and your husband and it also allows me to be greatful for the few bites I was able to have and at this time I am able to drink. You and the others that share are what keeps me going. It allows me to remember that I am not alone. Thank you.Blessed Be,Janine Recovery

Good morning:

Several of you have been disappointed in your recovery times and

ability to eat etc. I can tell you a story that will make you

thankful that you are where you are.

My husband began having problems about the first of the year. By

early March he could not seem to swallow anything and was losing

weight like crazy. We got in to a gastroenterologist as soon as

possible and had the EGD. Achalasia. Now find a surgeon. The

insurance company was no help...they could not give me any names and

even this group did not know of anyone in the Dallas/Ft Worth area.

Traveling was really not an option. So, I did find a surgeon that

the Director of Surgery at my hospital (I am a nurse) had worked with

and had treated achalasia. So far so good. Except of course he was

not on our insurance and the process for getting a waiver was a

little behind the actual surgery date. Anyway, first surgery was

delayed due to a questionable EKG which turned out to be nothing.

Next day came surgery. Heller and partial wrap. The post op

motility test showed no real passage but swelling was to blame we

thought. Three weeks or so later we were back in the hospital with

dehydration and more weight loss. Dilitation showed the area around

the surgery very swollen and tight. After discharge, about another 3-

4 weeks later we were back in the hospital, again with dehydration.

Another dilitation and still the swelling was severe. This could

take up to six months to resolve we were told. Actually, I think my

husband has made it worse by trying to eat and drink even though

nothing is going through, the constant irritation of his putting

stuff into the esophagus and then regurgitating, but who could blame

him, he was starving and dehydrated. I lived in fear of esophageal

rupture daily.

Next step (early July) was placement of a G-tube or a feeding tube so

that he could get nutrition and give the swelling time to heal. At

that time the surgical area was still very swollen and the area that

was easily dilated at the previous dilitation was again tight. Right

now we are waiting. Another dilitation in early August and perhaps

at six months we will have to go in and redo the wrap.

I can just hear some of you saying we should have gone to one the THE

surgeons. But our surgeon has experience with achalasia and an

excellent reputation. He has been very knowledgeable about treatment

and options. Actually what I have found out is that 15% of the

surgeries are not successful. Looks like we will be in that 15%.

So there has been a huge toll. He lost his job...he had just started

it a few weeks before the surgery. I worry every day about losing

our house because of all the medical bills. On just my salary I

don't see how we will ever be able to keep up. All my vacation and

sick time has been used due to his hospitalizations. Oh, and I did

not even mention the two visits to the ER for kidney stones, brought

on by dehydration.

So, I guess, while I understand your frustration at not healing as

quickly as you had hoped, be thankful for what you do have going. It

could be worse. And I know that there are some folks out there who

have had more troubles than we have, so I am thankful that at least

now he is not dehydrated and on a manic quest for something to drink

that will quench his thirst.

Sorry, this is long and sounds like poor pitiful me, but I am feeling

frustrated today, maybe more than usual.

paula

[Guest guest]

Sandy you bring up valid points. I was present during the post op

swallow study and saw all of the films myself. Even the delay in

emptying (there was a little movement at 15 minutes) looked different

than the films pre-op, which I also saw. I also saw the photos from

each of the dilitations and I saw the severe tissue swelling after

the surgery. Yes, the thought is currently that the wrap may be too

tight. After another dilitation or two and looking at the tissue to

see if there are changes, the decision will be made to go back in or

not. Every subsequent surgery increases the risk of surgery becoming

open not laparoscopic, as well as the issues of adhesions and

scarring making the surgery more difficult. I also worried about the

esophagus stretching more and the potential for rupture, but the

films show that it does not look as saggy-baggy as pre surgery and

with some other things that have happened we think it is actually

regaining some of its strength.

So, while I have considered going to someone else, I really think we

are better off staying with someone who knows the case from the

beginning and the one who knows the most about what has gone on

during surgery and since then. There is something to be said for

continuity of care. Since the onset and course of the disease were

not typical, I guess the cure will not be typical either.

I appreciate your thoughts.

a

[Guest guest]

a,

I'm so sorry to hear about all that's happened to you and your

husband! I can relate to some of your story since my husband, ,

lost his job last September because of his Diffuse Esophageal Spasm.

He had been with his employer over 3 years, so he was able to apply

for FMLA to take time off on his bad spasm days. Unfortunately, they

started to put pressure on him at his job (because they didn't want

someone who couldn't work every day) and his spasms seemed to get

worse, so he worked even less days! He went into a deep depression

after losing his job and I was in a panic, wondering how to pay the

bills and COBRA with my salary alone, without stressing him out too

much! I can also relate to how you worry about their health (and

nutrition)! This definitely affects spouses and families, too!

I hope things start to improve for the both of you! Feel free to

vent on this site, too. I know, I have a few times in the past.

Please keep us posted on what's happening.

in Michigan

>

> Good morning:

> Several of you have been disappointed in your recovery times and

> ability to eat etc. I can tell you a story that will make you

> thankful that you are where you are.

>

> My husband began having problems about the first of the year. By

> early March he could not seem to swallow anything and was losing

> weight like crazy. We got in to a gastroenterologist as soon as

> possible and had the EGD. Achalasia. Now find a surgeon. The

> insurance company was no help...they could not give me any names and

> even this group did not know of anyone in the Dallas/Ft Worth area.

> Traveling was really not an option. So, I did find a surgeon that

> the Director of Surgery at my hospital (I am a nurse) had worked with

> and had treated achalasia. So far so good. Except of course he was

> not on our insurance and the process for getting a waiver was a

> little behind the actual surgery date. Anyway, first surgery was

> delayed due to a questionable EKG which turned out to be nothing.

> Next day came surgery. Heller and partial wrap. The post op

> motility test showed no real passage but swelling was to blame we

> thought. Three weeks or so later we were back in the hospital with

> dehydration and more weight loss. Dilitation showed the area around

> the surgery very swollen and tight. After discharge, about another 3-

> 4 weeks later we were back in the hospital, again with dehydration.

> Another dilitation and still the swelling was severe. This could

> take up to six months to resolve we were told. Actually, I think my

> husband has made it worse by trying to eat and drink even though

> nothing is going through, the constant irritation of his putting

> stuff into the esophagus and then regurgitating, but who could blame

> him, he was starving and dehydrated. I lived in fear of esophageal

> rupture daily.

>

> Next step (early July) was placement of a G-tube or a feeding tube so

> that he could get nutrition and give the swelling time to heal. At

> that time the surgical area was still very swollen and the area that

> was easily dilated at the previous dilitation was again tight. Right

> now we are waiting. Another dilitation in early August and perhaps

> at six months we will have to go in and redo the wrap.

>

> I can just hear some of you saying we should have gone to one the THE

> surgeons. But our surgeon has experience with achalasia and an

> excellent reputation. He has been very knowledgeable about treatment

> and options. Actually what I have found out is that 15% of the

> surgeries are not successful. Looks like we will be in that 15%.

>

> So there has been a huge toll. He lost his job...he had just started

> it a few weeks before the surgery. I worry every day about losing

> our house because of all the medical bills. On just my salary I

> don't see how we will ever be able to keep up. All my vacation and

> sick time has been used due to his hospitalizations. Oh, and I did

> not even mention the two visits to the ER for kidney stones, brought

> on by dehydration.

>

> So, I guess, while I understand your frustration at not healing as

> quickly as you had hoped, be thankful for what you do have going. It

> could be worse. And I know that there are some folks out there who

> have had more troubles than we have, so I am thankful that at least

> now he is not dehydrated and on a manic quest for something to drink

> that will quench his thirst.

>

> Sorry, this is long and sounds like poor pitiful me, but I am feeling

> frustrated today, maybe more than usual.

> paula

>

[Guest guest]

a, I sympathize over your post. I spent most of my savings on my usual bills and then some, and this was after losing lots of jobs to take care of my daughter (clinical depression, serious anemia, hemorrhagic periods--I had them, too), and so I had to sell my house, pay off bills, moved to a smaller house, and then, I went downwards, depression and Achalasia, regurgitating in public, foaming at night, paying off the vet. bills when my much beloved ie dog got hemangio sarcoma (treatments and ex-rays and two transfusions. Then, I had surgery, myotomy, Cedars, was down and weak and needed to net-cast for jobs again... and I have only now begun to do that. My surgery was in late Jan. of 2006 but my depression and worries over things (I also have a few other health problems, small strokes among them), well, I have lost almost

all of my savings. It's been tough but I will get over this. So, shoot! Say anything and everything! VENT! I'm with you! I just finished paying off one small Cedars bill last week! Hurrah! Too bad my health insurance doubled. But, I am lucky to have it. all best, Deborah

[Guest guest]

Man-0-Man, a! I hope this swelling and dehydration and all the other things involved in your husband's recuperation can get solved soon. I have heard of swelling problems before. Does Notan or have ideas on this? It just does not sound right to me. You said that 15% of the surgeries don't work but I'd really like to know which ones among these had swelling and what caused it. I hope this can be successfully address and soon, too. Best wishes, Deborah