Re: Feeling Desperate

[Guest guest]

try to find a lyme literate psychiatrist. if her problems are lyme induced

she needs to be on the antibiotics to help lower the bacterial load, most

likely IV antibiotics would be best. californialyme group might be

able to give you some referalls as well as this group. also calling some of

the top lyme literate drs. they could give you names of psychiatrists that

can help, but again if this is induced by lyme she will not get better

without addressing the lyme infection.

best wishes

On Thu, Nov 4, 2010 at 5:42 AM, annie <akannielm@...> wrote:

>

>

> I wrote earlier that my daughter had contracted naurological lyme after

> having been well for quite some time. She admitted her self into the psych

> ward of a local hespital. They've taken her off all her meds for lyme and

> the brain meds Dr. Bransfield prescribed for her. She has episodes where she

> speaks outloud and she sounds like differentpeop;e. It sounds like she's

> having an argument. This happened yesterday while sitting right next to the

> counselor and has didn't notice. I don't knoe ehrtr to take her next. Dr.

> Bransfild didn't have any ideawhere to put her. I live in North East Pa if

> anyone has any suggestions.

> Thanx,

> Annie

>

>

>

[Guest guest]

Obviously, being named , and having achalasia are not a good combination.

, from Austraia, and who just posted, almost have twin problems,

post HM.

 

To , just as a harmless test, I would ask you to try drinking more

than you think you need to at the conclusion of every meal. If you can handle

carbonation, try that. If your doctor says " no " to carbonation, I would question

him about that. The myotomy may have created a situation where your esophagus

can now accommodate an increased amount of food where you no longer have the

compulsion to either regurgitate or spontaneously regurgitate.

  

Consider the possibility that when you finish a meal that there is plenty of

food remaining at the base of your esophagus that is just building up

" sedimentary " layers that subsequent ingestion of both liquids and solids cannot

get through. As obvious as it sounds you must make every effort to clear your

esophagus at the end of a meal. Some of us in this group have developed over

time a greater " ability " to know if there is residual food there. Some can

swallow air, and by doing so willfully bring up this food that they may or may

not know has been sitting there.

 

There still is the possibility that three weeks out your esophagus still needs

to recover from the surgery (i.e. reduced swelling) before a more normal eating

and drinking can commence.

 

 

 

________________________________

From: " lindsaywalker877@... " <lindsaywalker877@...>

achalasia

Sent: Wednesday, May 16, 2012 11:34 AM

Subject: Feeling desperate

 

So I had my HM 3 weeks ago as of today. It started off okay, fluids where doing

down. About 2 weeks ago I started regurgitating again once in awhile and now for

the past week I am regurgitating almost everything I try and get in me, which is

still just fluids. I'm regurgitating so much that the sides of my mouth are

chapped, around 20 times a day.

I am so hungry, so thirsty, so tired, that I am just feeling miserable. I have

talked to my surgeon who is so kind and really understands that this isn't easy

but he said we will have to wait at least 45 days or so before he will scope me

to try and figure out what is going on. Based on my symptoms he thinks most

likely things are getting stuck in the kink of my esophagus since it is sigmoid

shape.

I'm just not sure how to handle another 20 days like this. How do you take care

of babies, work full time, and deal with all the stresses of life when you can

barely walk 10 ft without needing to sit down. I'm trying really hard to stay

positive, I usually am always that annoyingly happy person, I just have never

had to deal with something like this. I'm afraid that I will most likely need to

have an esophagectomy, but honestly at this point, I would be willing to do

anything to feel better.

And to top it all off I was just diagnosed with an immune mediated arthritis of

my back, another chronic disease I get to deal with for the rest of my life.

So very frustrated with this disease right now and I'm angry the HM isn't

working like it should. Just needed to vent.

[Guest guest]

Kim,

I am so sorry for your troubles. I guess I'm afraid I may be headed in the

direction you have had to take. I know in my head that eventually someday I

will look back and think Jeez that summer sucked! But I really wish I could get

to that point already.

My husband is super supportive as well and it means so much. How are you

handling getting fluids in? And not to mention being hungry? I have found that

even though i still regurg. them, popsicles take the hunger away.

Anyways hope things improve for you! We will get to the otherside of this,

sooner rather than later I hope.

>

> I can only say that I can sympathize with you because I'm in the same

boat atm.  I'm not sure how I'm going to work my way out of it either, but it

has to break soon.

>

> I'm a month and a half out from my esophagectomy, still no food by mouth, and

now (the last week or so) throwing up bile probably nearly a dozen times a day.

 I feel like shit and mentally just can't get past it.  I had a dilatation

today, but my surgeon says that it's too early to do a " serious " one, so it was

very gentle, and just enough to open the pyloric syphincter as it seems that

myotomy had scarred over nicely.  My family is trying to be super supportive

and I just keep shutting them down because I just know things are going to get

better and I'm tired and frustrated and depressed.

>

> I hope you get relief soon ... I hope we all do.

>

> kim in canada

>

>

>

> ________________________________

> From: " lindsaywalker877@... " <lindsaywalker877@...>

> achalasia

> Sent: Wednesday, May 16, 2012 12:34 PM

> Subject: Feeling desperate

>

>

>  

>

> So I had my HM 3 weeks ago as of today. It started off okay, fluids where

doing down. About 2 weeks ago I started regurgitating again once in awhile and

now for the past week I am regurgitating almost everything I try and get in me,

which is still just fluids. I'm regurgitating so much that the sides of my

mouth are chapped, around 20 times a day.

>

> I am so hungry, so thirsty, so tired, that I am just feeling miserable. I

have talked to my surgeon who is so kind and really understands that this isn't

easy but he said we will have to wait at least 45 days or so before he will

scope me to try and figure out what is going on. Based on my symptoms he thinks

most likely things are getting stuck in the kink of my esophagus since it is

sigmoid shape.

>

> I'm just not sure how to handle another 20 days like this. How do you take

care of babies, work full time, and deal with all the stresses of life when you

can barely walk 10 ft without needing to sit down. I'm trying really hard to

stay positive, I usually am always that annoyingly happy person, I just have

never had to deal with something like this. I'm afraid that I will most likely

need to have an esophagectomy, but honestly at this point, I would be willing to

do anything to feel better.

>

> And to top it all off I was just diagnosed with an immune mediated arthritis

of my back, another chronic disease I get to deal with for the rest of my life.

>

> So very frustrated with this disease right now and I'm angry the HM isn't

working like it should. Just needed to vent.

>

>

>

>

>

[Guest guest]

Hi ,

 

I am so sorry that you have been down this route for so long and that the

myotomy that should have given you the kind of relief you have read that many

others have obtained has, for the moment, eluded you.  This is such a strange

disease with so many variables. Each surgeon has their own way, regardless of

how many times they have performed the surgery, to do the myotomy, and perhaps

that might be part of the reason some people seem to experience better results

than others.

 

Being dehydrated, weak and hungry only adds to the misery.

 

I can only hope that things begin to turn around by themselves in a short period

of time, otherwise its back to the surgeon or to seek out other opinions. I am

hoping for the best for you.

 

________________________________

From: " lindsaywalker877@... " <lindsaywalker877@...>

achalasia

Sent: Wednesday, May 16, 2012 7:39 PM

Subject: Re: Feeling desperate

 

Hi ,

I appreciate your response. Guzzling liquids is how I was always able to swallow

in the past. So out of habit I have tried this with no success. I am still only

taking in liquids, and really just juice and water at this point. I was drinking

milk but found that it was curtling (sp?) in my E and than hours to days later I

would regurg. chunks of it (when I hadn't had anything chunk to begin with) so I

have stopped with the milk.

I have been dealing with achalasia for a long time and have definitely developed

a habit of clearing my E. I can't stand that feeling in my chest.

I am so sorry so many other people on here have had the same problem. I am

nervous about getting dehydrated as I'm only getting in about 30 oz of fluids (I

think, it's hard to tell how much actually goes down) daily. Not to mention

physically I am drained.

I'm really hoping that a few more weeks and things will get better, but I have a

bad feeling about it. My surgeon was originally very confident in the myotomy

and said that once the drainage problem was fixed, my E should start to shrink

back to a more normal size. Has anyone actually experienced this?

>

> Obviously, being named , and having achalasia are not a good

combination. , from Austraia, and who just posted, almost have

twin problems, post HM.

>  

> To , just as a harmless test, I would ask you to try drinking

more than you think you need to at the conclusion of every meal. If you can

handle carbonation, try that. If your doctor says " no " to carbonation, I would

question him about that. The myotomy may have created a situation where your

esophagus can now accommodate an increased amount of food where you no longer

have the compulsion to either regurgitate or spontaneously regurgitate.

>   

> Consider the possibility that when you finish a meal that there is plenty of

food remaining at the base of your esophagus that is just building up

" sedimentary " layers that subsequent ingestion of both liquids and solids cannot

get through. As obvious as it sounds you must make every effort to clear your

esophagus at the end of a meal. Some of us in this group have developed over

time a greater " ability " to know if there is residual food there. Some can

swallow air, and by doing so willfully bring up this food that they may or may

not know has been sitting there.

>  

> There still is the possibility that three weeks out your esophagus still needs

to recover from the surgery (i.e. reduced swelling) before a more normal eating

and drinking can commence.

>  

>

>  

>  

>

> ________________________________

> From: " lindsaywalker877@... " <lindsaywalker877@...>

> achalasia

> Sent: Wednesday, May 16, 2012 11:34 AM

> Subject: Feeling desperate

>

>

>  

>

> So I had my HM 3 weeks ago as of today. It started off okay, fluids where

doing down. About 2 weeks ago I started regurgitating again once in awhile and

now for the past week I am regurgitating almost everything I try and get in me,

which is still just fluids. I'm regurgitating so much that the sides of my mouth

are chapped, around 20 times a day.

>

> I am so hungry, so thirsty, so tired, that I am just feeling miserable. I have

talked to my surgeon who is so kind and really understands that this isn't easy

but he said we will have to wait at least 45 days or so before he will scope me

to try and figure out what is going on. Based on my symptoms he thinks most

likely things are getting stuck in the kink of my esophagus since it is sigmoid

shape.

>

> I'm just not sure how to handle another 20 days like this. How do you take

care of babies, work full time, and deal with all the stresses of life when you

can barely walk 10 ft without needing to sit down. I'm trying really hard to

stay positive, I usually am always that annoyingly happy person, I just have

never had to deal with something like this. I'm afraid that I will most likely

need to have an esophagectomy, but honestly at this point, I would be willing to

do anything to feel better.

>

> And to top it all off I was just diagnosed with an immune mediated arthritis

of my back, another chronic disease I get to deal with for the rest of my life.

>

> So very frustrated with this disease right now and I'm angry the HM isn't

working like it should. Just needed to vent.

>

>

>

>

>

[Guest guest]

I've read literature that indicates mega esoph

have reduced by 10 cm after HM. It came out

of a lit review of thoracic sugary journals. Hang in there.

And perhaps you can tell me the same when

it is my turn, eh?

Faith

Sent from my iPod

On May 16, 2012, at 18:39, " lindsaywalker877@... "

<lindsaywalker877@...> wrote:

>

> Hi ,

>

> I appreciate your response. Guzzling liquids is how I was always able to

swallow in the past. So out of habit I have tried this with no success. I am

still only taking in liquids, and really just juice and water at this point. I

was drinking milk but found that it was curtling (sp?) in my E and than hours to

days later I would regurg. chunks of it (when I hadn't had anything chunk to

begin with) so I have stopped with the milk.

>

> I have been dealing with achalasia for a long time and have definitely

developed a habit of clearing my E. I can't stand that feeling in my chest.

>

> I am so sorry so many other people on here have had the same problem. I am

nervous about getting dehydrated as I'm only getting in about 30 oz of fluids (I

think, it's hard to tell how much actually goes down) daily. Not to mention

physically I am drained.

>

> I'm really hoping that a few more weeks and things will get better, but I have

a bad feeling about it. My surgeon was originally very confident in the myotomy

and said that once the drainage problem was fixed, my E should start to shrink

back to a more normal size. Has anyone actually experienced this?

>

>

> >

> > Obviously, being named , and having achalasia are not a good

combination. , from Austraia, and who just posted, almost have

twin problems, post HM.

> > Â

> > To , just as a harmless test, I would ask you to try drinking

more than you think you need to at the conclusion of every meal. If you can

handle carbonation, try that. If your doctor says " no " to carbonation, I would

question him about that. The myotomy may have created a situation where your

esophagus can now accommodate an increased amount of food where you no longer

have the compulsion to either regurgitate or spontaneously regurgitate.

> > Â Â

> > Consider the possibility that when you finish a meal that there is plenty of

food remaining at the base of your esophagus that is just building up

" sedimentary " layers that subsequent ingestion of both liquids and solids cannot

get through. As obvious as it sounds you must make every effort to clear your

esophagus at the end of a meal. Some of us in this group have developed over

time a greater " ability " to know if there is residual food there. Some can

swallow air, and by doing so willfully bring up this food that they may or may

not know has been sitting there.

> > Â

> > There still is the possibility that three weeks out your esophagus still

needs to recover from the surgery (i.e. reduced swelling) before a more normal

eating and drinking can commence.

> > Â

> >

> > Â

> > Â

> >

> > ________________________________

> > From: " lindsaywalker877@... " <lindsaywalker877@...>

> > achalasia

> > Sent: Wednesday, May 16, 2012 11:34 AM

> > Subject: Feeling desperate

> >

> >

> > Â

> >

> > So I had my HM 3 weeks ago as of today. It started off okay, fluids where

doing down. About 2 weeks ago I started regurgitating again once in awhile and

now for the past week I am regurgitating almost everything I try and get in me,

which is still just fluids. I'm regurgitating so much that the sides of my mouth

are chapped, around 20 times a day.

> >

> > I am so hungry, so thirsty, so tired, that I am just feeling miserable. I

have talked to my surgeon who is so kind and really understands that this isn't

easy but he said we will have to wait at least 45 days or so before he will

scope me to try and figure out what is going on. Based on my symptoms he thinks

most likely things are getting stuck in the kink of my esophagus since it is

sigmoid shape.

> >

> > I'm just not sure how to handle another 20 days like this. How do you take

care of babies, work full time, and deal with all the stresses of life when you

can barely walk 10 ft without needing to sit down. I'm trying really hard to

stay positive, I usually am always that annoyingly happy person, I just have

never had to deal with something like this. I'm afraid that I will most likely

need to have an esophagectomy, but honestly at this point, I would be willing to

do anything to feel better.

> >

> > And to top it all off I was just diagnosed with an immune mediated arthritis

of my back, another chronic disease I get to deal with for the rest of my life.

> >

> > So very frustrated with this disease right now and I'm angry the HM isn't

working like it should. Just needed to vent.

> >

> >

> >

> >

> >

[Guest guest]

Oh - I am so so sorry that this is happening! I was so hopeful that

things were turning around for you. I will continue to hope and pray that they

will! When I got so bad last month, it was so hard to care for the kids and to

cope with my life in general. The kids worried, too, and that was intolerable

for me! I wish there was something that I could do for you, but if nothing else,

I understand a little bit what you are going through. This disease just sucks!

I had a BoTox treatment 2 weeks ago and the surgeon said that it should last up

to 6 months and he wanted to wait 3 months to do the surgery. I made an

appointment to see him on July 12th and was excited to have a break from the

nightmare for a couple of months. However, 2 weeks later, I am starting back

with symptoms and I know that there is no way that I can wait that long for the

surgery. I have been in denial, but I guess I need to go ahead and accept it and

move up the appointment.

Anyway, I just wanted to let you know that I am thinking about you and that I am

walking this road beside you for whatever that is worth!

xoxo,

>

>

> So I had my HM 3 weeks ago as of today. It started off okay, fluids where

doing down. About 2 weeks ago I started regurgitating again once in awhile and

now for the past week I am regurgitating almost everything I try and get in me,

which is still just fluids. I'm regurgitating so much that the sides of my

mouth are chapped, around 20 times a day.

>

> I am so hungry, so thirsty, so tired, that I am just feeling miserable. I

have talked to my surgeon who is so kind and really understands that this isn't

easy but he said we will have to wait at least 45 days or so before he will

scope me to try and figure out what is going on. Based on my symptoms he thinks

most likely things are getting stuck in the kink of my esophagus since it is

sigmoid shape.

>

> I'm just not sure how to handle another 20 days like this. How do you take

care of babies, work full time, and deal with all the stresses of life when you

can barely walk 10 ft without needing to sit down. I'm trying really hard to

stay positive, I usually am always that annoyingly happy person, I just have

never had to deal with something like this. I'm afraid that I will most likely

need to have an esophagectomy, but honestly at this point, I would be willing to

do anything to feel better.

>

> And to top it all off I was just diagnosed with an immune mediated arthritis

of my back, another chronic disease I get to deal with for the rest of my life.

>

> So very frustrated with this disease right now and I'm angry the HM isn't

working like it should. Just needed to vent.

>

[Guest guest]

You're so sweet . Was very hopeful as well, things started out great and

then everything just fell to pieces. I am having a really hard time with my

energy level. I can't even get through a shower without feeling like I need to

sit down. My poor family, I feel useless when I'm with them, I just am

exhausted. I go back to work this Sunday and I'm really concerned if I can do

it. It's unfortunate that life doesn't stop just because you are sick

I'm thinking about calling my Dr. again on Monday and begging him to scope me to

see if he can figure out what's going. This waiting 45 days (which is what he

told me we needed to do) is for the birds. It's only been 23 days so far, I

don't know how I'm going to do another 22.

I'm sorry your symptoms are coming back so soon, hopefully they will be a little

less severe? It is really hard having to handle a family and everything else

that life brings when in reality, I want to crawl into a hole until this is all

over with.

anyawys, thanks for your support!

> >

> >

> > So I had my HM 3 weeks ago as of today. It started off okay, fluids where

doing down. About 2 weeks ago I started regurgitating again once in awhile and

now for the past week I am regurgitating almost everything I try and get in me,

which is still just fluids. I'm regurgitating so much that the sides of my

mouth are chapped, around 20 times a day.

> >

> > I am so hungry, so thirsty, so tired, that I am just feeling miserable. I

have talked to my surgeon who is so kind and really understands that this isn't

easy but he said we will have to wait at least 45 days or so before he will

scope me to try and figure out what is going on. Based on my symptoms he thinks

most likely things are getting stuck in the kink of my esophagus since it is

sigmoid shape.

> >

> > I'm just not sure how to handle another 20 days like this. How do you take

care of babies, work full time, and deal with all the stresses of life when you

can barely walk 10 ft without needing to sit down. I'm trying really hard to

stay positive, I usually am always that annoyingly happy person, I just have

never had to deal with something like this. I'm afraid that I will most likely

need to have an esophagectomy, but honestly at this point, I would be willing to

do anything to feel better.

> >

> > And to top it all off I was just diagnosed with an immune mediated arthritis

of my back, another chronic disease I get to deal with for the rest of my life.

> >

> > So very frustrated with this disease right now and I'm angry the HM isn't

working like it should. Just needed to vent.

> >

>

[Guest guest]

wrote:

>

> ... Based on my symptoms he thinks most likely things are getting

> stuck in the kink of my esophagus since it is sigmoid shape. ...

>

The kink is usually to one side. You could try bending to one side and

then the other and repeating. No guarantees but you could get lucky.

http://libraries.umdnj.edu/rwjlbweb/Basicrad/FILES/IMAGES/RBT012.GIF

notan