Re: Stem cell and Achalasia

[Guest guest]

The stem cell treatment could be beneficial.

I am suspected of having " secondary achalasia " brought on by

celiac/dermatitis herpetiformis. At the time I had my hellers myotomy

I had no peristalsis in my " e " . Several years later I had symptoms of

dermatitis herpetiformis. I went on a gluten free diet and began

taking dapsone. After several more years I told my GI Dr that it seems

like my swallowing problems have gotten much better. A motility study

and barium swallow confirmed that peristalsis had returned to my " e " .

The peristalsis is ok and helps but since it relies on a nerve response

form the LES that had been cut and doesn't function at all, the

peristalsis is not 100%. However, it is vastly improved from the

first days of Achalasia.

Stem cell and Achalasia

I was going through stem cell research and stumbled upon this patent

article which talks about many gastrointestinal ailment treatment,

including achalasia, using stem cell injection into GItract. This is

the link

http://www.patentstorm.us/patents/6808702/description.html

This is a patent claim which means they have already developed

techniques to regenerate neural cells in GI tract. I was wondering if

it becomes a line of treatment one day, will that be helpful in anyway

to those who already got surgical treatment like Heller myotomy? What

you think people? Its a stupid question but does anybody has any idea

how much time will it take to have a such a line of treatment for

achalasia?

-Ayondeep

[Guest guest]

Very interesting. I've just learned I have Celiac Disease and have HD now

too.I break out on my hands and feet.

From: achalasia [mailto:achalasia ] On Behalf

Of watsongm@...

Sent: Friday, October 10, 2008 3:39 PM

achalasia

Subject: Re: Stem cell and Achalasia

The stem cell treatment could be beneficial.

I am suspected of having " secondary achalasia " brought on by

celiac/dermatitis herpetiformis. At the time I had my hellers myotomy

I had no peristalsis in my " e " . Several years later I had symptoms of

dermatitis herpetiformis. I went on a gluten free diet and began

taking dapsone. After several more years I told my GI Dr that it seems

like my swallowing problems have gotten much better. A motility study

and barium swallow confirmed that peristalsis had returned to my " e " .

The peristalsis is ok and helps but since it relies on a nerve response

form the LES that had been cut and doesn't function at all, the

peristalsis is not 100%. However, it is vastly improved from the

first days of Achalasia.

Stem cell and Achalasia

I was going through stem cell research and stumbled upon this patent

article which talks about many gastrointestinal ailment treatment,

including achalasia, using stem cell injection into GItract. This is

the link

http://www.patentstorm.us/patents/6808702/description.html

This is a patent claim which means they have already developed

techniques to regenerate neural cells in GI tract. I was wondering if

it becomes a line of treatment one day, will that be helpful in anyway

to those who already got surgical treatment like Heller myotomy? What

you think people? Its a stupid question but does anybody has any idea

how much time will it take to have a such a line of treatment for

achalasia?

-Ayondeep

[Guest guest]

That is interesting. There was a poll in the group several years ago. I

think there were 5 or 6 people that indicated that they had celiac disease.

Have they suggested taking Dapsone? How long have you had Achalasia?

In a message dated 10/10/2008 5:43:53 P.M. Eastern Daylight Time,

juliecwarren@... writes:

Very interesting. I've just learned I have Celiac Disease and have HD now

too.I break out on my hands and feet.

From: _achalasia@grouachala_ (mailto:achalasia )

[mailto:_achalasia@grouachala_ (mailto:achalasia ) ] On

Behalf

Of _watsongm@..._ (mailto:watsongm@...)

Sent: Friday, October 10, 2008 3:39 PM

_achalasia@grouachala_ (mailto:achalasia )

Subject: Re: Stem cell and Achalasia

The stem cell treatment could be beneficial.

I am suspected of having " secondary achalasia " brought on by

celiac/dermatitis herpetiformis. At the time I had my hellers myotomy

I had no peristalsis in my " e " . Several years later I had symptoms of

dermatitis herpetiformis. I went on a gluten free diet and began

taking dapsone. After several more years I told my GI Dr that it seems

like my swallowing problems have gotten much better. A motility study

and barium swallow confirmed that peristalsis had returned to my " e " .

The peristalsis is ok and helps but since it relies on a nerve response

form the LES that had been cut and doesn't function at all, the

peristalsis is not 100%. However, it is vastly improved from the

first days of Achalasia.

Stem cell and Achalasia

I was going through stem cell research and stumbled upon this patent

article which talks about many gastrointestinal ailment treatment,

including achalasia, using stem cell injection into GItract. This is

the link

_http://www.patentsthttp://www.patehttp://www.patenhttp://w_

(http://www.patentstorm.us/patents/6808702/description.html)

This is a patent claim which means they have already developed

techniques to regenerate neural cells in GI tract. I was wondering if

it becomes a line of treatment one day, will that be helpful in anyway

to those who already got surgical treatment like Heller myotomy? What

you think people? Its a stupid question but does anybody has any idea

how much time will it take to have a such a line of treatment for

achalasia?

-Ayondeep

[Non-text portions of this message have been removed]

**************New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out

(http://local.mapquest.com/?ncid=emlcntnew00000002)

[Guest guest]

Ayondeep wrote:

> This is a patent claim which means they have already developed

> techniques to regenerate neural cells in GI tract.

Stem cells have produced GI neural cells in the GI tract, though

claiming a patent does not mean that had to have happened. You can claim

anything. Getting a patent approved means that someone in the field the

patent is in that is knowledgeable should believe it is a sound idea.

> I was wondering if

> it becomes a line of treatment one day, will that be helpful in anyway

> to those who already got surgical treatment like Heller myotomy?

If it can restore peristalsis in the esophagus that would be good, but

the LES will still have lower pressure than normal because of the

myotomy. It will not undo the myotomy. One of the problems with stem

cells for primary achalasia is that no one knows what causes the damage

to the nerves. If the damage continues after stem cell treatment the new

nerve cells may just get destroyed too.

There are some stem cell treatments being done for autoimmune disorders

which are life threatening. The FDA " fast tracked " these and they are

now doing human trials, but I don't think any of them are completely

through the trials yet. With these disorders they reset the immune

system by completely destroying it and then rebuilding it from the

patients own stem cells. This works because the autoimmune disorders in

these cases are not genetic. They are epigenetic.

For achalasia I doubt there are any human trials going on and it may be

years before there are, because achalasia stem cell research is unlikely

to get FDA fast track approval. When human trials start it will probably

be many years before our doctors can provide stem cell treatments for

us, if the treatments even work for achalasia.

It is interesting though and it does give us some hope. I just think we

need to realize any benefit is probably years away and probably should

not be a factor in our treatment decisions today.

notan

[Guest guest]

Great patent article, now I understand why Nitroglycerin tablets,

LArgentine and magnesium have helped me. In particular magnesium

helps in the conduction of electrons. L Argentine has been reported in

the Files section.

That is why I have held on with out an operation where they destroy

the LES. I am waiting for a cure, yes I have had BAD days and I tell

my wife I may need an operation.But not yet!!!!!!!!!!

If you are thinking about an operation, try to hold off, find out

just what you can eat.If you can not get water down, try a nitro

pill for the heart, they are cheap. I get them from my Cardiologist

for the heart. I tried one the other day and after a few minutes the

LES opened up.

Most patents have been tried, I have a lot of medical electronic

patents, and they were perfected before the application. It is hard

to get a patent with out a prototype or concept that works.

Ray OC CA 78

>

> I was going through stem cell research and stumbled upon this patent

> article which talks about many gastrointestinal ailment treatment,

> including achalasia, using stem cell injection into GItract. This is

> the link

>

> http://www.patentstorm.us/patents/6808702/description.html

>

> This is a patent claim which means they have already developed

> techniques to regenerate neural cells in GI tract. I was wondering if

> it becomes a line of treatment one day, will that be helpful in anyway

> to those who already got surgical treatment like Heller myotomy? What

> you think people? Its a stupid question but does anybody has any idea

> how much time will it take to have a such a line of treatment for

> achalasia?

>

> -Ayondeep

>

[Guest guest]

I was just diagnosed.well kind of.I had positive blood tests for celiac and

Crohn's but the biopsies were negative, for that reason they will not treat

me. I am on the GF diet to see if long term it will help..it didn't the last

time after 2 weeks. I've had Achalasia since I was young..now 38.

From: achalasia [mailto:achalasia ] On Behalf

Of watsongm@...

Sent: Friday, October 10, 2008 8:50 PM

achalasia

Subject: Re: Stem cell and Achalasia

That is interesting. There was a poll in the group several years ago. I

think there were 5 or 6 people that indicated that they had celiac disease.

Have they suggested taking Dapsone? How long have you had Achalasia?

In a message dated 10/10/2008 5:43:53 P.M. Eastern Daylight Time,

juliecwarren@... <mailto:juliecwarren%40gmail.com> writes:

Very interesting. I've just learned I have Celiac Disease and have HD now

too.I break out on my hands and feet.

From: _achalasia@grouachala_ (mailto:achalasia

<mailto:achalasia%40> )

[mailto:_achalasia@grouachala_ (mailto:achalasia

<mailto:achalasia%40> ) ] On Behalf

Of _watsongm@... <mailto:_watsongm%40aol.wat> _ (mailto:watsongm@...

<mailto:watsongm%40aol.com> )

Sent: Friday, October 10, 2008 3:39 PM

_achalasia@grouachala_ (mailto:achalasia

<mailto:achalasia%40> )

Subject: Re: Stem cell and Achalasia

The stem cell treatment could be beneficial.

I am suspected of having " secondary achalasia " brought on by

celiac/dermatitis herpetiformis. At the time I had my hellers myotomy

I had no peristalsis in my " e " . Several years later I had symptoms of

dermatitis herpetiformis. I went on a gluten free diet and began

taking dapsone. After several more years I told my GI Dr that it seems

like my swallowing problems have gotten much better. A motility study

and barium swallow confirmed that peristalsis had returned to my " e " .

The peristalsis is ok and helps but since it relies on a nerve response

form the LES that had been cut and doesn't function at all, the

peristalsis is not 100%. However, it is vastly improved from the

first days of Achalasia.

Stem cell and Achalasia

I was going through stem cell research and stumbled upon this patent

article which talks about many gastrointestinal ailment treatment,

including achalasia, using stem cell injection into GItract. This is

the link

_http://www.patentsthttp://www.patehttp://www.patenhttp://w_

<http://www.patentsthttp:/www.patehttp:/www.patenhttp:/w_>

(http://www.patentstorm.us/patents/6808702/description.html)

This is a patent claim which means they have already developed

techniques to regenerate neural cells in GI tract. I was wondering if

it becomes a line of treatment one day, will that be helpful in anyway

to those who already got surgical treatment like Heller myotomy? What

you think people? Its a stupid question but does anybody has any idea

how much time will it take to have a such a line of treatment for

achalasia?

-Ayondeep

[Guest guest]

going to casas for lunch tomorrow and i get to try some fish and pasta.  yay!

 

so far so good w/ the swallowing.....

 

have a great weekend.  tell me what you did, k?

Stem cell and Achalasia

I was going through stem cell research and stumbled upon this patent

article which talks about many gastrointestinal ailment treatment,

including achalasia, using stem cell injection into GItract. This is

the link

http://www.patentst orm.us/patents/ 6808702/descript ion..html

This is a patent claim which means they have already developed

techniques to regenerate neural cells in GI tract. I was wondering if

it becomes a line of treatment one day, will that be helpful in anyway

to those who already got surgical treatment like Heller myotomy? What

you think people? Its a stupid question but does anybody has any idea

how much time will it take to have a such a line of treatment for

achalasia?

-Ayondeep

[Guest guest]

I went to find out about the patent referenced under

Pasricha, Pankaj J. Found the attached below.

He is now at Stanford and seems to be involved in our problems. I

origionally thought I had gastroparesis as I was on the high side but

later found Achalasia.

He has an email address at Stanford.

http://med.stanford.edu/profiles/gastrohep/researcher/Pankaj_Pasricha/

I will email him and let him know about this site.

Ray

Principal Investigator/Program Director (Last, first, middle):

Pasricha, Pankaj J.

PHS 398 (Rev. 4/98) (Form Page 6) Page __ FF

Number pages consecutively at the bottom throughout the application. Do

not use suffixes such as 3a, 3b.

" Molecular Mechanisms of Pain in Chronic Pancreatitis " (PI) Type: R01

DK073558-01A2 Agency: NIH Period: 01/15/2007 - 12/31/2010 The major

goals of this project are 1) to determine the ionic and molecular basis

for increased excitability of pancreas-specific primary nociceptive

neurons in chronic pancreatitis, 2) to determine the effects of chronic

pancreatitis on expression and release of peptide neurotransmitters and

their role in maintaining nociceptive sensitization, and 3) to

determine the role of NGF in the pathogenesis of pain behavior and

pancreas-specific sensory neuronal responses in chronic pancreatitis.

The goals will be accomplished using a variety of behavioral,

electrophysiological, cellular and molecular techniques

Research Support (Current, Federal) " Molecular Approaches to

Pathogenesis and Therapy in Human Gastroparesis " (PI) Type: 1 U01

DK073983-01 Agency: NIH Period: 04/15/2006 - 03/31/2011 The overall aim

of this proposal is to lay the foundation for creating a network of

clinical research sites with central data collection and analysis, and

develop and implement common research protocols to study

gastroparesis.There are three specific aims: 1. To participate in the

design and to support the development of a Gastroparesis Database (GPD)

that will serve as an instrument to support the other specific aims of

this proposal as well as facilitate clinical and translational research

across the Consortium. 2. To understand the pathological basis of

gastroparesis and identify molecular factors involved in its

pathogenesis. 3. To study the efficacy of a novel drug strategy

targeted against the NK1 receptor in the treatment of gastroparesis.

>

> I was going through stem cell research and stumbled upon this patent

> article which talks about many gastrointestinal ailment treatment,

> including achalasia, using stem cell injection into GItract. This is

> the link

>

> http://www.patentstorm.us/patents/6808702/description.html

>

> This is a patent claim which means they have already developed

> techniques to regenerate neural cells in GI tract. I was wondering if

> it becomes a line of treatment one day, will that be helpful in anyway

> to those who already got surgical treatment like Heller myotomy? What

> you think people? Its a stupid question but does anybody has any idea

> how much time will it take to have a such a line of treatment for

> achalasia?

>

> -Ayondeep

>

[Guest guest]

Dr. Pasricha knows about this mailing list and is concerned about

achalasia, as is his (former?) colleague Dr. Micci. For example I think

he pioneered the use of Botox for achalasia many years ago.

In 2006 I emailed him after his work with stem cells was discussed on

this list, and he replied, " At the present time, we are not ready for

human trials. Hopefully, this will be a realistic possibility within

2-3years. " (It's now 2 years later but I haven't read anything about

human trials. It's probably still out in the future.)

He also wrote, " Indeed, this project was initiated by my desire to find

a real cure for achalasia so I am very pleased to see that even our

animal experiments have heartened the patients with this disorder, even

though we have miles to go before clinical trials. "

Dr. Pasricha has written a great deal about achalasia, including the new

idea of a myotomy from inside the esophagus with no external incisions.

I hope he will continue to work on innovative treatments for achalasia

at Stanford.

-- in PA

Re: Stem cell and Achalasia

>I went to find out about the patent referenced under

> Pasricha, Pankaj J. Found the attached below.

>

> He is now at Stanford and seems to be involved in our problems. I

> origionally thought I had gastroparesis as I was on the high side but

> later found Achalasia.

>

> He has an email address at Stanford.

>

> http://med.stanford.edu/profiles/gastrohep/researcher/Pankaj_Pasricha/

>

> I will email him and let him know about this site.

>

> Ray

>

>

> Principal Investigator/Program Director (Last, first, middle):

> Pasricha, Pankaj J.

> PHS 398 (Rev. 4/98) (Form Page 6) Page __ FF

> Number pages consecutively at the bottom throughout the application.

> Do

> not use suffixes such as 3a, 3b.

> " Molecular Mechanisms of Pain in Chronic Pancreatitis " (PI) Type: R01

> DK073558-01A2 Agency: NIH Period: 01/15/2007 - 12/31/2010 The major

> goals of this project are 1) to determine the ionic and molecular

> basis

> for increased excitability of pancreas-specific primary nociceptive

> neurons in chronic pancreatitis, 2) to determine the effects of

> chronic

> pancreatitis on expression and release of peptide neurotransmitters

> and

> their role in maintaining nociceptive sensitization, and 3) to

> determine the role of NGF in the pathogenesis of pain behavior and

> pancreas-specific sensory neuronal responses in chronic pancreatitis.

> The goals will be accomplished using a variety of behavioral,

> electrophysiological, cellular and molecular techniques

>

>

> Research Support (Current, Federal) " Molecular Approaches to

> Pathogenesis and Therapy in Human Gastroparesis " (PI) Type: 1 U01

> DK073983-01 Agency: NIH Period: 04/15/2006 - 03/31/2011 The overall

> aim

> of this proposal is to lay the foundation for creating a network of

> clinical research sites with central data collection and analysis, and

> develop and implement common research protocols to study

> gastroparesis.There are three specific aims: 1. To participate in the

> design and to support the development of a Gastroparesis Database

> (GPD)

> that will serve as an instrument to support the other specific aims of

> this proposal as well as facilitate clinical and translational

> research

> across the Consortium. 2. To understand the pathological basis of

> gastroparesis and identify molecular factors involved in its

> pathogenesis. 3. To study the efficacy of a novel drug strategy

> targeted against the NK1 receptor in the treatment of gastroparesis.

>

>

>>

>> I was going through stem cell research and stumbled upon this patent

>> article which talks about many gastrointestinal ailment treatment,

>> including achalasia, using stem cell injection into GItract. This is

>> the link

>>

>> http://www.patentstorm.us/patents/6808702/description.html

>>

>> This is a patent claim which means they have already developed

>> techniques to regenerate neural cells in GI tract. I was wondering if

>> it becomes a line of treatment one day, will that be helpful in

>> anyway

>> to those who already got surgical treatment like Heller myotomy? What

>> you think people? Its a stupid question but does anybody has any idea

>> how much time will it take to have a such a line of treatment for

>> achalasia?

>>

>> -Ayondeep

>>

>

>

>

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

>

>

[Guest guest]

I met a young Dr. Pasricha 15 years ago at s Hopkins Hospital when he asked

me to participate in a new study for Achalasia patients to determine if Botox

injections could possibly substitute for the Heller Myotomy.

Since the FDA had mandated that all participants must have a Manometry study

done both before and after the botox injections, and I had already had my Heller

Myotomy and two failed manometries, I respectfully declined his invitation.

He impressed me with both his knowledge of achalasia and his desire to find some

kind of a cure.  Its heartwarming to read every now and then that he is still

out there for us, even if I will never reap the benefits of his research.

________________________________

From: <1x2y3z@...>

achalasia

Sent: Saturday, October 11, 2008 5:35:52 PM

Subject: Re: Re: Stem cell and Achalasia

Dr. Pasricha knows about this mailing list and is concerned about

achalasia, as is his (former?) colleague Dr. Micci. For example I think

he pioneered the use of Botox for achalasia many years ago.

In 2006 I emailed him after his work with stem cells was discussed on

this list, and he replied, " At the present time, we are not ready for

human trials. Hopefully, this will be a realistic possibility within

2-3years. " (It's now 2 years later but I haven't read anything about

human trials. It's probably still out in the future.)

He also wrote, " Indeed, this project was initiated by my desire to find

a real cure for achalasia so I am very pleased to see that even our

animal experiments have heartened the patients with this disorder, even

though we have miles to go before clinical trials. "

Dr. Pasricha has written a great deal about achalasia, including the new

idea of a myotomy from inside the esophagus with no external incisions.

I hope he will continue to work on innovative treatments for achalasia

at Stanford.

-- in PA

Re: Stem cell and Achalasia

>I went to find out about the patent referenced under

> Pasricha, Pankaj J. Found the attached below.

>

> He is now at Stanford and seems to be involved in our problems. I

> origionally thought I had gastroparesis as I was on the high side but

> later found Achalasia.

>

> He has an email address at Stanford.

>

> http://med.stanford .edu/profiles/ gastrohep/ researcher/ Pankaj_Pasricha/

>

> I will email him and let him know about this site.

>

> Ray

>

>

> Principal Investigator/ Program Director (Last, first, middle):

> Pasricha, Pankaj J.

> PHS 398 (Rev. 4/98) (Form Page 6) Page __ FF

> Number pages consecutively at the bottom throughout the application.

> Do

> not use suffixes such as 3a, 3b.

> " Molecular Mechanisms of Pain in Chronic Pancreatitis " (PI) Type: R01

> DK073558-01A2 Agency: NIH Period: 01/15/2007 - 12/31/2010 The major

> goals of this project are 1) to determine the ionic and molecular

> basis

> for increased excitability of pancreas-specific primary nociceptive

> neurons in chronic pancreatitis, 2) to determine the effects of

> chronic

> pancreatitis on expression and release of peptide neurotransmitters

> and

> their role in maintaining nociceptive sensitization, and 3) to

> determine the role of NGF in the pathogenesis of pain behavior and

> pancreas-specific sensory neuronal responses in chronic pancreatitis.

> The goals will be accomplished using a variety of behavioral,

> electrophysiologica l, cellular and molecular techniques

>

>

> Research Support (Current, Federal) " Molecular Approaches to

> Pathogenesis and Therapy in Human Gastroparesis " (PI) Type: 1 U01

> DK073983-01 Agency: NIH Period: 04/15/2006 - 03/31/2011 The overall

> aim

> of this proposal is to lay the foundation for creating a network of

> clinical research sites with central data collection and analysis, and

> develop and implement common research protocols to study

> gastroparesis. There are three specific aims: 1. To participate in the

> design and to support the development of a Gastroparesis Database

> (GPD)

> that will serve as an instrument to support the other specific aims of

> this proposal as well as facilitate clinical and translational

> research

> across the Consortium. 2. To understand the pathological basis of

> gastroparesis and identify molecular factors involved in its

> pathogenesis. 3. To study the efficacy of a novel drug strategy

> targeted against the NK1 receptor in the treatment of gastroparesis.

>

>

>>

>> I was going through stem cell research and stumbled upon this patent

>> article which talks about many gastrointestinal ailment treatment,

>> including achalasia, using stem cell injection into GItract. This is

>> the link

>>

>> http://www.patentst orm.us/patents/ 6808702/descript ion.html

>>

>> This is a patent claim which means they have already developed

>> techniques to regenerate neural cells in GI tract. I was wondering if

>> it becomes a line of treatment one day, will that be helpful in

>> anyway

>> to those who already got surgical treatment like Heller myotomy? What

>> you think people? Its a stupid question but does anybody has any idea

>> how much time will it take to have a such a line of treatment for

>> achalasia?

>>

>> -Ayondeep

>>

>

>

>

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

>

>

[Guest guest]

and ,

It sounds like Celiac and dermatitis herpetiformis are both

autoimmune, is that right? I have a dumb question, but is DH related

somehow to the herpes virus? I tried to research it, but didn't get a

chance to read the long articles that seemed to link the 2 conditions

together (didn't get a chance to see if the herpes virus comes into

play anywhere).

, it's good to hear that you've had some peristalsis return

and , I'm still thinking of you in your journey to get an

accurate diagnosis. Hang in there, both of you!

in Michigan

>

> The stem cell treatment could be beneficial.

>

> I am suspected of having " secondary achalasia " brought on by

> celiac/dermatitis herpetiformis. At the time I had my hellers myotomy

> I had no peristalsis in my " e " . Several years later I had symptoms of

> dermatitis herpetiformis. I went on a gluten free diet and began

> taking dapsone. After several more years I told my GI Dr that it seems

> like my swallowing problems have gotten much better. A motility study

> and barium swallow confirmed that peristalsis had returned to my " e " .

>

> The peristalsis is ok and helps but since it relies on a nerve response

> form the LES that had been cut and doesn't function at all, the

> peristalsis is not 100%. However, it is vastly improved from the

> first days of Achalasia.

>

>

>

>

>

>

>

>

[Guest guest]

No its not connected to Herpes, though by the name you would think it was!!

As for my journey I'm planning on going to Mayo on November 3rd to get some

answers.

From: achalasia [mailto:achalasia ] On Behalf

Of let45ride

Sent: Thursday, October 16, 2008 6:33 AM

achalasia

Subject: Re: Stem cell and Achalasia

and ,

It sounds like Celiac and dermatitis herpetiformis are both

autoimmune, is that right? I have a dumb question, but is DH related

somehow to the herpes virus? I tried to research it, but didn't get a

chance to read the long articles that seemed to link the 2 conditions

together (didn't get a chance to see if the herpes virus comes into

play anywhere).

, it's good to hear that you've had some peristalsis return

and , I'm still thinking of you in your journey to get an

accurate diagnosis. Hang in there, both of you!

in Michigan

>

> The stem cell treatment could be beneficial.

>

> I am suspected of having " secondary achalasia " brought on by

> celiac/dermatitis herpetiformis. At the time I had my hellers myotomy

> I had no peristalsis in my " e " . Several years later I had symptoms of

> dermatitis herpetiformis. I went on a gluten free diet and began

> taking dapsone. After several more years I told my GI Dr that it seems

> like my swallowing problems have gotten much better. A motility study

> and barium swallow confirmed that peristalsis had returned to my " e " .

>

> The peristalsis is ok and helps but since it relies on a nerve response

> form the LES that had been cut and doesn't function at all, the

> peristalsis is not 100%. However, it is vastly improved from the

> first days of Achalasia.

>

>

>

>

>

>

>

>

[Guest guest]

,

Thanks for clearing that up for me (glad I asked a dumb question

. Good luck and please keep us posted on how things go!

in Michigan

> >

> > The stem cell treatment could be beneficial.

> >

> > I am suspected of having " secondary achalasia " brought on by

> > celiac/dermatitis herpetiformis. At the time I had my hellers myotomy

> > I had no peristalsis in my " e " . Several years later I had symptoms of

> > dermatitis herpetiformis. I went on a gluten free diet and began

> > taking dapsone. After several more years I told my GI Dr that it

seems

> > like my swallowing problems have gotten much better. A motility study

> > and barium swallow confirmed that peristalsis had returned to my " e " .

> >

> > The peristalsis is ok and helps but since it relies on a nerve

response

> > form the LES that had been cut and doesn't function at all, the

> > peristalsis is not 100%. However, it is vastly improved from the

> > first days of Achalasia.

> >

> >

> >

> >

> >

> >

> >

> >

>

>

>

>

>

>

[Guest guest]

,

Thanks..I will. We are going to be moving next weekend..so I may be IMA for

awhile..they aren't sure that I can have AT & T internet where we are moving!!

UGH!!

From: achalasia [mailto:achalasia ] On Behalf

Of let45ride

Sent: Thursday, October 16, 2008 6:59 PM

achalasia

Subject: Re: Stem cell and Achalasia

,

Thanks for clearing that up for me (glad I asked a dumb question

. Good luck and please keep us posted on how things go!

in Michigan

> >

> > The stem cell treatment could be beneficial.

> >

> > I am suspected of having " secondary achalasia " brought on by

> > celiac/dermatitis herpetiformis. At the time I had my hellers myotomy

> > I had no peristalsis in my " e " . Several years later I had symptoms of

> > dermatitis herpetiformis. I went on a gluten free diet and began

> > taking dapsone. After several more years I told my GI Dr that it

seems

> > like my swallowing problems have gotten much better. A motility study

> > and barium swallow confirmed that peristalsis had returned to my " e " .

> >

> > The peristalsis is ok and helps but since it relies on a nerve

response

> > form the LES that had been cut and doesn't function at all, the

> > peristalsis is not 100%. However, it is vastly improved from the

> > first days of Achalasia.

> >

> >

> >

> >

> >

> >

> >

> >

>

>

>

>

>

>

[Guest guest]

Notan,

Thanks for explaining more about DH! So far, we haven't found

anything out about the hives has. At his last gastro. appt.,

the doc asked him if he ever feels cold (he is ALL the time) and ever

gets hives (Yes, definitely). He ordered a 24 hr. urine collection,

testing for 5-HIAA level. From what I could tell, 5-HIAA relates to

seratonin metabolism. It's been about 2 weeks since he turned in his

sample. He's having an EGD on Tuesday, so I'll ask the gastro. doc

about it then. By the way, his internist recently ordered a blood

test of his thyroid level and that came back normal. I'll let you

know what we find out. Take care!

in Michigan

> > ... is DH related somehow to the herpes virus?

>

> Dermatitis Herpetiformis causes skin problems (dermatitis) that may

look

> like chicken pox (herpetiformis), but has nothing to do with the virus

> family that causes chicken pox (herpes).

>

> Did you find out anything about the hives? I have found the hives

> interesting. As long as I can remember I have gotten very small hard

> bumps along my spine that can be very itchy. If my wife runs her

> fingernail over one it feels like a raw nerve or a fine sliver stuck in

> my skin. I only get one or two at a time. If I scratch them open they

> are very slow to heal.

>

> notan

>