Greetings

February 9, 2008

Just a little bit, hes had a stressful day so I gave him a brake! Lol

> >> >

> >> > Hello, My name is Josh, I am engaged to Tonya, who has SMA, she

is on

> >> > the group as Tonya1187. We have been together almost 7 months. Cant

> >> > wait to join in on the community here! I wanted to say hello to

> >> > everyone, so HELLO!

> >> >

> >

>

June 19, 2008

Pamela

sorry to hear about your ordeal. We all empathise completely with you.

My family tried leaving our house and going to our families cabin. We

took brand new clothes, and while we were gone we covered ourselves in

permethrins and took ivermectin - (I wouldnt recommend that by the way)

At that point we thought we had scabies, and that leaving for a week

would solve the problem in our enviroment - what ever we had could

live for more than 3 weeks off a host....others 'mites' seem to

survive for months and months.

Anyway we only were gone for a week, and when we got back the

nightmare was waiting for us.....I got pretty close to being 'free' of

this at the cabin, but not completely.

I think if you were to move, leaving everything behind, and treated

your environment and yourself with a good internal and a good topical

that you might be able to get rid of this.

(some people have used epsome salt both disolved in water and poured

on themselves, and sprayed in their environment....or like my family

we followed Rays protocol which can be found in the files

section...there are also other products like cedarside that seem to be

working.....)

Its great that you have found this forum....as to what kind of mite

you actually have - I'm not sure.....we never did ID what was

torenting us. We spent a lot of time attempting to find out what

exactly we had, sometimes its best to just consentrate on getting rid

of what ever it is.....

z

June 19, 2008

I made this same mistake about a month ago " We

took brand new clothes, and while we were gone we covered ourselves in

permethrins and took ivermectin - (I wouldnt recommend that by the

way) " . God I was freaking out thinking I was going to die from that

posion. Totally regret getting the permethrins spray.

>

> Pamela

> sorry to hear about your ordeal. We all empathise completely with you.

>

> My family tried leaving our house and going to our families cabin. We

> took brand new clothes, and while we were gone we covered ourselves in

> permethrins and took ivermectin - (I wouldnt recommend that by the way)

> At that point we thought we had scabies, and that leaving for a week

> would solve the problem in our enviroment - what ever we had could

> live for more than 3 weeks off a host....others 'mites' seem to

> survive for months and months.

>

> Anyway we only were gone for a week, and when we got back the

> nightmare was waiting for us.....I got pretty close to being 'free' of

> this at the cabin, but not completely.

>

> I think if you were to move, leaving everything behind, and treated

> your environment and yourself with a good internal and a good topical

> that you might be able to get rid of this.

> (some people have used epsome salt both disolved in water and poured

> on themselves, and sprayed in their environment....or like my family

> we followed Rays protocol which can be found in the files

> section...there are also other products like cedarside that seem to be

> working.....)

>

> Its great that you have found this forum....as to what kind of mite

> you actually have - I'm not sure.....we never did ID what was

> torenting us. We spent a lot of time attempting to find out what

> exactly we had, sometimes its best to just consentrate on getting rid

> of what ever it is.....

>

> z

>

June 21, 2008

Yeah, Dr. Bronner's magic soaps are good for this problem. It's good

to wash the body with them as well. I found that peppermint stung

too much. I do Dial Anti-Bacterial bar soap first, then I go over

with tea tree oil shampoo. I got some from another brand on sale.

In the " Files " section on the left in the group you will find some

longer protocols of what to do.

What I do is the following:

1) Shower before bed and when getting up (after breakfast).

2) After shower, thick vaseline around ankles and in areas that the

mites like, for me on the inner thighs, pubic area, chest,

shoulders. I shave off all body hair and since I'm a guy, my head. I

put the vaseline on after both showers. Once when I tried not

putting it on, I got bad bites in those areas.

3) Spray bed with Witch Hazel (by rubbing alcohol in stores)with a

dribble of tea tree oil and eucalyptus oil before shower so it dries

out a bit by the time I get to it, you can buy these in larger

quantities at GNC and Vitamin Shoppe etc. Witch Hazel is good from

generic brands.

4)I spray myself from head to toe with Cedarcide before bed and

sometimes I spray my bed as well. This repels them so well, I eat

breakfast with the stuff on, but because of the smell, I need to wash

up before I go out of the apartment. Some people have been able to

get rid of them completely by fogging their house several times with

a trijet fogger using Cedarcide (Joan).

5) I take Garlic and Cayenne Pepper supplements several times a day.

I used to take B1 and Vitamin C a lot but I've cut down.

6)Thick layer or Borax on car floor (thanks Rita) and 50 gallon black

garbage bag over car seat.

7)Synthetic clothing--sports wear (thanks Myrtle Maui). The bugs

don't infest them very easily and they wash easier.

8) Avoid sugar and alcohol.

9)Use foot powder in your shoes. Puff some in there and then shake

it so it spreads inside. Take out the sole of the shoe and do it,

then do it again with the sole inside.

10) After wearing shoe, spray inside with Witch Hazel conction

(mentioned earlier) and rubbing alcohol.

11) Sarna anti-itch lotion on itchy bites.

12) Hemp lotion seems to repel them--I've largely shifted to hemp

lotion (from Nature's Gate from Whole Foods) when I used to use

Cutter repellant that contains Picardin. I still use Picardin

repellant on the outside of clothing when I go to my car.

13) Baby powder can be poofed liberally inside underwear when the

bugs start biting or crawling.

14) Rubbing alcohol can be sprayed on crawling areas or biting areas,

it kills on contact. Try not to inhale it. I spray the floor and

seat of my car with it before going in, but you need to air it out

then.

15) In addition to the Borax etc. in laundry, for drying, I use three

Bounce sheets and 4 Arm and Hammer " Essentials " sheets. " Essentials "

contain essential oils that seem to help a lot in killing/repelling

the mites. I ran out just recently and it seems I had much more

trouble with clothes that I hadn't treated with " Essentials. "

Lavender is a good scent with this. I'm now going to experiment with

another.

I have full spectrum lights in my room, but I don't know how well

they help. I also have a dehumidifyer, that I believe helps a lot,

and an ionic air purifyer that creates small bits of ozone and helps

a bit, I think.

I am limited in how well I can treat this. I can't use an ozone

generator or spray stuff, or put down diatomacious earth or Borax on

the floors, so I can't take care of it as whole sale as I would like

to, but these are ideas.

Also, check for birds or rodents in your house or around your house.

Put out rodent traps just to see if you catch any and poison to see

if it gets eaten (if you don't have pets). Rodents can get in really

tricky places and they can bring this plague of mites on us. I think

I may have rodents nearby and they may be making things worse. This

all started for me with a dead rat or squirrel in a different place.

>

> Hi everyone,

>

> I am new to the list and so happy to find a forum on this. Support

> groups can be so invaluable during times of stress like this.

>

> Like many of you, I have felt like I was going crazy, since my

> boyfriend is not getting attacked at all, and all I see is these

> black spots after I am bitten and they don't seem to move. Also,

> most bites go away within 4 hours, which also makes me look crazy.

> But the biting keeps me awake all night long, and the lack of sleep

> is wearing me down.

>

> My experiences are a bit different, but the bug's tenacity is

> frightening. I stayed at a hotel last weekend, and by the second

day

> it was infested, too! That was so depressing I started feeling

> hopeless and suicidal.

>

> I live in Texas and someone suggested I might have spider mites.

> Does anyone have experience with those?

>

> My biggest question is how to successfully move to a new location

> leaving all of this behind. I have not gotten control over them

here

> yet, as I beleive they are coming through my apartment AC unit.

>

> Any help or suggestions would be greatly appreciated.

>

> Many thanks,

> Pamela

>

June 23, 2008

Thank

you SO MUCH loviatar3 for taking the time to list all of your remedies.

I am trying hemp lotion. Where can we find

synthetic clothing? I have a swim shirt that they seem unable to penetrate.

Thank you zmooks, too, for your

suggestions. It is so nice to know that people like you have actually gotten

past all this.

It helps so much.

I do love Dr. Bonner’s lavender and

the bugs don’t seem to like it at all.

Have people experimented with candles?

I burned one all night long last night

(not the safest I know) because they seemed to be leaving me alone.

Of course, then when I woke up I found

they had been infesting my eyes all night, so I am not sure how it worked.

Maybe it just confused them for a little

bit.

, I have felt been this close to

suicide, either.

Luckily, my fiancé is so supportive and

gives me strength when I don’t have it.

As a psychologist, I know how important it

is to vent, so do it whenever you need to.

God, my eyes are killing me now.

Many thanks for you all,

Pamela

Re:

Greetings

Yeah, Dr. Bronner's magic soaps are good for this problem. It's good

to wash the body with them as well. I found that peppermint stung

too much. I do Dial Anti-Bacterial bar soap first, then I go over

with tea tree oil shampoo. I got some from another brand on sale.

In the " Files " section on the left in the group you will find some

longer protocols of what to do.

What I do is the following:

1) Shower before bed and when getting up (after breakfast).

2) After shower, thick vaseline around ankles and in areas that the

mites like, for me on the inner thighs, pubic area, chest,

shoulders. I shave off all body hair and since I'm a guy, my head. I

put the vaseline on after both showers. Once when I tried not

putting it on, I got bad bites in those areas.

3) Spray bed with Witch Hazel (by rubbing alcohol in stores)with a

dribble of tea tree oil and eucalyptus oil before shower so it dries

out a bit by the time I get to it, you can buy these in larger

quantities at GNC and Vitamin Shoppe etc. Witch Hazel is good from

generic brands.

4)I spray myself from head to toe with Cedarcide before bed and

sometimes I spray my bed as well. This repels them so well, I eat

breakfast with the stuff on, but because of the smell, I need to wash

up before I go out of the apartment. Some people have been able to

get rid of them completely by fogging their house several times with

a trijet fogger using Cedarcide (Joan).

5) I take Garlic and Cayenne Pepper supplements several times a day.

I used to take B1 and Vitamin C a lot but I've cut down.

6)Thick layer or Borax on car floor (thanks Rita) and 50 gallon black

garbage bag over car seat.

7)Synthetic clothing--sports wear (thanks Myrtle Maui). The bugs

don't infest them very easily and they wash easier.

8) Avoid sugar and alcohol.

9)Use foot powder in your shoes. Puff some in there and then shake

it so it spreads inside. Take out the sole of the shoe and do it,

then do it again with the sole inside.

10) After wearing shoe, spray inside with Witch Hazel conction

(mentioned earlier) and rubbing alcohol.

11) Sarna anti-itch lotion on itchy bites.

12) Hemp lotion seems to repel them--I've largely shifted to hemp

lotion (from Nature's Gate from Whole Foods) when I used to use

Cutter repellant that contains Picardin. I still use Picardin

repellant on the outside of clothing when I go to my car.

13) Baby powder can be poofed liberally inside underwear when the

bugs start biting or crawling.

14) Rubbing alcohol can be sprayed on crawling areas or biting areas,

it kills on contact. Try not to inhale it. I spray the floor and

seat of my car with it before going in, but you need to air it out

then.

15) In addition to the Borax etc. in laundry, for drying, I use three

Bounce sheets and 4 Arm and Hammer " Essentials " sheets.

" Essentials "

contain essential oils that seem to help a lot in killing/repelling

the mites. I ran out just recently and it seems I had much more

trouble with clothes that I hadn't treated with " Essentials. "

Lavender is a good scent with this. I'm now going to experiment with

another.

I have full spectrum lights in my room, but I don't know how well

they help. I also have a dehumidifyer, that I believe helps a lot,

and an ionic air purifyer that creates small bits of ozone and helps

a bit, I think.

I am limited in how well I can treat this. I can't use an ozone

generator or spray stuff, or put down diatomacious earth or Borax on

the floors, so I can't take care of it as whole sale as I would like

to, but these are ideas.

Also, check for birds or rodents in your house or around your house.

Put out rodent traps just to see if you catch any and poison to see

if it gets eaten (if you don't have pets). Rodents can get in really

tricky places and they can bring this plague of mites on us. I think

I may have rodents nearby and they may be making things worse. This

all started for me with a dead rat or squirrel in a different place.

>

> Hi everyone,

>

> I am new to the list and so happy to find a forum on this. Support

> groups can be so invaluable during times of stress like this.

>

> Like many of you, I have felt like I was going crazy, since my

> boyfriend is not getting attacked at all, and all I see is these

> black spots after I am bitten and they don't seem to move. Also,

> most bites go away within 4 hours, which also makes me look crazy.

> But the biting keeps me awake all night long, and the lack of sleep

> is wearing me down.

>

> My experiences are a bit different, but the bug's tenacity is

> frightening. I stayed at a hotel last weekend, and by the second

day

> it was infested, too! That was so depressing I started feeling

> hopeless and suicidal.

>

> I live in Texas and someone suggested I might have spider mites.

> Does anyone have experience with those?

>

> My biggest question is how to successfully move to a new location

> leaving all of this behind. I have not gotten control over them

here

> yet, as I beleive they are coming through my apartment AC unit.

>

> Any help or suggestions would be greatly appreciated.

>

> Many thanks,

> Pamela

>

June 23, 2008

Hi Pamela,

You can find synthetic (polyester, acrylic, nylon) clothing at Kmart

or Ross Dress for Less. Kmart has synthetic women's clothing that you

can wear to work -- dresses, skirts, blouses. Also, they carry Hanes

underpants made of nylon. Don't buy rayon because it attracts bugs,

and the poly/cotton and poly/rayon blends also attract bugs.

At Ross, they have a lot of polyester in the athletic wear section,

and small amounts of polyester in the regular clothing.

I never experimented with candles, but have been sleeping on a camping

cot for several months, and I have the feet of the cot resting in

furniture cups that are filled with baited diatomaceous earth. I use

satin sheets (100% polyester) that keep the mites away too. You can

buy those at Ross as well, but they don't always have them in stock so

you need to keep checking. I was a Ross junkie for awhile, until I

got stocked up.

myrtle

> >

> > Hi everyone,

> >

> > I am new to the list and so happy to find a forum on this. Support

> > groups can be so invaluable during times of stress like this.

> >

> > Like many of you, I have felt like I was going crazy, since my

> > boyfriend is not getting attacked at all, and all I see is these

> > black spots after I am bitten and they don't seem to move. Also,

> > most bites go away within 4 hours, which also makes me look crazy.

> > But the biting keeps me awake all night long, and the lack of sleep

> > is wearing me down.

> >

> > My experiences are a bit different, but the bug's tenacity is

> > frightening. I stayed at a hotel last weekend, and by the second

> day

> > it was infested, too! That was so depressing I started feeling

> > hopeless and suicidal.

> >

> > I live in Texas and someone suggested I might have spider mites.

> > Does anyone have experience with those?

> >

> > My biggest question is how to successfully move to a new location

> > leaving all of this behind. I have not gotten control over them

> here

> > yet, as I beleive they are coming through my apartment AC unit.

> >

> > Any help or suggestions would be greatly appreciated.

> >

> > Many thanks,

> > Pamela

> >

>

June 23, 2008

I have not tried candles but I have tried heated seats in my car (cut

down bites significantly).

Also, noted that we got almost no bites in the room where we had a

gas pilot light (in fireplace) burning all winter.

I now have placed these (Victor's Flea Traps) in many rooms:

http://www.jefferspet.com/ssc/product.asp?

CID=0 & mscssid=S5VUB5XX3A2K8KFT1NS9FD8DQDET4APC

including one on each side of our bed. They do not eliminate the

mites but we believe they manage to trap many of them that would

otherwise end up on us or our pets.

> >

> > Hi everyone,

> >

> > I am new to the list and so happy to find a forum on this.

Support

> > groups can be so invaluable during times of stress like this.

> >

> > Like many of you, I have felt like I was going crazy, since my

> > boyfriend is not getting attacked at all, and all I see is these

> > black spots after I am bitten and they don't seem to move. Also,

> > most bites go away within 4 hours, which also makes me look

crazy.

> > But the biting keeps me awake all night long, and the lack of

sleep

> > is wearing me down.

> >

> > My experiences are a bit different, but the bug's tenacity is

> > frightening. I stayed at a hotel last weekend, and by the second

> day

> > it was infested, too! That was so depressing I started feeling

> > hopeless and suicidal.

> >

> > I live in Texas and someone suggested I might have spider mites.

> > Does anyone have experience with those?

> >

> > My biggest question is how to successfully move to a new location

> > leaving all of this behind. I have not gotten control over them

> here

> > yet, as I beleive they are coming through my apartment AC unit.

> >

> > Any help or suggestions would be greatly appreciated.

> >

> > Many thanks,

> > Pamela

> >

>

August 16, 2008

Hello Margaret and welcome,

Please dont feel you will bore anyone on here because that isnt the case. We all have our battles that we are fighting and will help if we can.

What form of medication do you take for your hypothyrodism? Do you find it effective or are you like many others on here who havent got well on their present medication?

I have Hashimotos, have been on thyroxine for 2 yrs nearly and havent felt completley well on it, it was through this site that I became aware of how important the adrenal glands are in all of this so I paid to have an adrenal profile done. The results were pretty shocking, showing that my adrenal function is poor with low cortisol output all day. This I feel is the main reason I havent got on that well with the Thyroxine and I have been boosting them with a glandular supplement for about 5 week or so with only slight improvement. I am now off the thyroxine awaiting to start treatment with cortisol and then will be restarting my thyroxine after a week. I do hope this is the answer for me.

There are many people on here who will help with any questions you have and they are all very knowledgeable!

I

From: Margaret <etain_darkorjan@...>Subject: Greetingsthyroid treatment Date: Saturday, 16 August, 2008, 4:22 PM

Hi all,Margaret @}->-Send instant messages to your online friends http://uk.messenger.

August 16, 2008

Hello Margaret and welcome,

Please dont feel you will bore anyone on here because that isnt the case. We all have our battles that we are fighting and will help if we can.

What form of medication do you take for your hypothyrodism? Do you find it effective or are you like many others on here who havent got well on their present medication?

I have Hashimotos, have been on thyroxine for 2 yrs nearly and havent felt completley well on it, it was through this site that I became aware of how important the adrenal glands are in all of this so I paid to have an adrenal profile done. The results were pretty shocking, showing that my adrenal function is poor with low cortisol output all day. This I feel is the main reason I havent got on that well with the Thyroxine and I have been boosting them with a glandular supplement for about 5 week or so with only slight improvement. I am now off the thyroxine awaiting to start treatment with cortisol and then will be restarting my thyroxine after a week. I do hope this is the answer for me.

There are many people on here who will help with any questions you have and they are all very knowledgeable!

I am

From: Margaret <etain_darkorjan@...>Subject: Greetingsthyroid treatment Date: Saturday, 16 August, 2008, 4:22 PM

Hi all,Margaret @}->-Send instant messages to your online friends http://uk.messenger.

August 16, 2008

I meant to say at the end of that before i sent it too early that I am 40 and live in Lincolnshire! I am hoping my life will really begin at 40 when I get this all sorted!!

From: Margaret <etain_darkorjan@...>Subject: Greetingsthyroid treatment Date: Saturday, 16 August, 2008, 4:22 PM

Hi all,Only just joined this group and as per the joining instructions am saying a quick hello.My name is Margaret, I am 51 years old, married and living in East Yorkshire. I have had an underactive thyroid for approximately 12 years and was diagnosed type 2 diabetic two years ago.I'll leave it at that for now so as not to bore you all and I am looking forward to getting to know people and learning a thing or two.Margaret @}->-Send instant messages to your online friends http://uk.messenger.

August 16, 2008

>

> Hi all,

>

> > My name is Margaret, I am 51 years old, married and living in East

> Yorkshire. I have had an underactive thyroid for approximately 12

> years and was diagnosed type 2 diabetic two years ago.

>

> I am

> looking forward to getting to know people and learning a thing or two.

>

> Margaret @}->-

Hi Margaret,

Welcome to sanity! I am fifty three years old and I was diagnosed in

February 07. Doctor thinks I have had hypothyroidism since at least

2004 though. I am from East Yorkshire also and joined earlier this

year, I was feeling desperate. You get loads of great support and

advice. You have done the right thing joining!

Best Wishes

Stephie

August 17, 2008

Hi Margaret

Welcome to TPA-UK and I hope you get all the help and support you need here. When you are ready and after you have read some of the messages on the forum, feel free to tell us all about yourself and why you felt the need to join us - no doubt because you were not getting the answers you need from the NHS (

Luv - Sheila

Greetings

Hi all,Only just joined this group and as per the joining instructions am saying a quick hello.My name is Margaret, I am 51 years old, married and living in East Yorkshire. I have had an underactive thyroid for approximately 12 years and was diagnosed type 2 diabetic two years ago.I'll leave it at that for now so as not to bore you all and I am looking forward to getting to know people and learning a thing or two.Margaret @}->-No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.4/1615 - Release Date: 16/08/2008 07:11

August 17, 2008

Hi Margaret,

Nice to read about you. I've noticed there's a lot of us 50 something

ladies on tpa, all of us with some thyroid issue or other, so you're in

good company.

Take care, enjoy Sunday,

x

>

> Hi all,

>

> Only just joined this group and as per the joining instructions am

> saying a quick hello.

>

August 17, 2008

(Message moderated to remove previous posts - just leave a little bit so that

people know what your message refers to, thanks)

Thank you all for your warm welcomes.

In answer to 's question I'm on Thyroxine - 175mg a day and have

been for quite some years. My blood tests usually come back as " in

normal parameters " and I'm just told to keep taking the same dose.

On the whole I feel ok, though probably like most people I have " off "

days. Obviously I am also on diabetic medication plus I take an

aspirin a day and something for cholesterol. You often hear

conflicting reports on what you should and/or shouldn't take, but

seeing as on the whole I mostly feel ok I leave it as it is.

I think the only thing that has got me down is my weight. I eat a

very healthy diet, I could exercise more I admit, but I just can't

shed any weight - haven't been able to for years. I never was a thin

person, but certainly smaller than I am now. The worst thing is

nobody ever seems to believe me when I say I can't seem to loose

weight, and if I give them a run through of what a normal day's

eating is they usually look at me in total disbelief as if I am lying

and not telling them about all the sweets and cakes and extras I

obviously eat in secret. That does get me down. However having been

this size for many years now I've come to live with it and people

just have to accept me for the person I am and not what they see on

the outside. Anybody who judges me because of my size are just too

shallow for me to be bothered with - however this state of mind has

taken quite a few years to get to and quite a bit of hurt along the

way.

---

> What form of medication do you take for your hypothyrodism? Do you

find it effective or are you like many others on here who havent got

well on their present medication?

October 28, 2008

Akibajz,

It's not too late to cancel and find a more experienced surgeon in

nearby Los Angeles, such as Dr. DeMeester, Dr. Tom DeMeester, or

Dr. Maish. Their contact information is here:

http://achalasiadoctors.wetpaint.com/page/West+Coast+states

These three surgeons all use the laparoscopic method with partial

fundoplication, which has been demonstrated many times to be the most

effective in reducing dysphagia and preventing heartburn. And they do

many more myotomies than 6-8 per year. It is worth the trip to have the

surgery done right the first time.

Please call or email one of these doctors today and get their advice.

in PA

Greetings

> Hi everyone,

>

> Just discovered this group tonight, and I'm nearly at the 11th

> hour before my scheduled open myotomy w/partial fundoplication on

> 11/3. Its great to know there are others out there with my challenges,

> and that I'm not really going at this alone.

>

> My diagnosis was made official last March but I've suffered with

> disphaghia for 16 months beforehand. The condition has gotten

> considerably worse since my diagnosis, almost as if the disease is

> gearing-up for an inevitable battle. I've had one barium swallow that

> lasted about 10 minutes (because the live flouroscopy films showed a

> classic representation of the disease) and an endoscopy that confirmed

> the unrelaxed LES. So....

>

> The surgeon performing the procedure is a specialist in esophageal

> surgery here in Las Vegas - apparently if someone here in Vegas

> has achalasia or esophageal cancer, they go to this specific surgeon,

> who says he does about 6~8 myotomies a year, and all are 'open'

> through a left-side thoracotomy - he flatly refuses to do the myotomy

> laparoscopically, but he claims a higher success rate. I'm not a

> pushover or naive, but in utter desperation I've agreed to the

> procedure even though I'm very skeptical of the outcome, however the

> pain I endure is too much and I cannot live this way any longer.

>

> Wish me luck!!

>

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

>

October 28, 2008

Bruce, I wish you all the luck in the world and sincerely hope you get the

most successful surgery ever. I can tell you though that what you have been

getting from this group is support.

I have not had the surgery, though I do have achalasia. That however is a

whole other email. Just wanted you to know that since I can't actually give

you first hand advise, I would vouch for everyone here who did and I know for

a fact they have only your success at heart. I've been a member of this

group for almost 9 years. I have seen many come and go, many different

surgeries, and I have heard the same stories over and over. If you have time

between

now and the 3rd and I doubt you do, you should read all the old messages.

Regardless of what option you chose, these people will be here for you and

with you as long as you wish. Welcome to the group.

Good luck and best wishes,

Maggie

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October 28, 2008

Bruce,

I'll be praying for you. I had my lap myotomy done on October 16th.

Recovery has beeneasy to this point. So far the outcome of mine has been great,

but I am still on a soft diet (still a big improvement). I feel like a new

person. I was tired of loosing weight, especially muscle mass, and feeling

weak. I was tired of regurging every meal and drink of water I tried to get

down. I know what that is like to think....this is it...I'm tired of

this... I'm doing whatever it takes to get better. There is much hope. --

Jeff

________________________________

From: akibajz <brucegeller@...>

achalasia

Sent: Tuesday, October 28, 2008 2:13:08 AM

Subject: Greetings

Hi everyone,

Just discovered this group tonight, and I'm nearly at the 11th

hour before my scheduled open myotomy w/partial fundoplication on

11/3. Its great to know there are others out there with my challenges,

and that I'm not really going at this alone.

My diagnosis was made official last March but I've suffered with

disphaghia for 16 months beforehand. The condition has gotten

considerably worse since my diagnosis, almost as if the disease is

gearing-up for an inevitable battle. I've had one barium swallow that

lasted about 10 minutes (because the live flouroscopy films showed a

classic representation of the disease) and an endoscopy that confirmed

the unrelaxed LES. So....

The surgeon performing the procedure is a specialist in esophageal

surgery here in Las Vegas - apparently if someone here in Vegas

has achalasia or esophageal cancer, they go to this specific surgeon,

who says he does about 6~8 myotomies a year, and all are 'open'

through a left-side thoracotomy - he flatly refuses to do the myotomy

laparoscopically, but he claims a higher success rate. I'm not a

pushover or naive, but in utter desperation I've agreed to the

procedure even though I'm very skeptical of the outcome, however the

pain I endure is too much and I cannot live this way any longer.

Wish me luck!!

October 28, 2008

I join in cautioning you about using this Las Vegas surgeon. 6 to 8

myotomies a year is not considered many, therefore reason enough to use another

surgeon, I have some other issues.

For example, who has ever gone into a bakery and asked if something is fresh and

got a " no " for an answer? Likewise, what surgeon has ever expressed not having

a great success rate for an often performed surgery? While this is not a reason

by itself not to use him, it maybe a part of a larger problem.

The surgeons I know who absolutely do not do this surgery laparoscopically are

the same surgeons who learned the open method in the 1970's and 1980's and never

learned how to do the laparascopic method mostly developed throughout the

1990's. This is not to say that you can't have just as good results (though you

are putting your body through a lot more trauma with it open), but the methods

learned in the 1970's and 1980's have been proven to be wrong. I don't know the

age of your surgeon, but if he fits this profile, I would take his success rate

with a " grain of salt " and find yourself a surgeon who is most up to date with

this surgical technique (preferably lap).

You say you are very skeptical of the outcome, most likely due to how sick you

have become from this (and not from the abilities of the surgeon), but you

should know that this is the kind of operation, if done correctly can make a

huge difference in the quality of your life. Believe it! If not performed

correctly, you may very well end up back where you are now. The time you invest

right now to find the best surgeon to do this for you will pay off in major

dividends for the rest of your life. Many members of this Board, including

myself, have traveled distances from their home to have this surgery done. It

is still not too late for you to do so.

________________________________

From: akibajz <brucegeller@...>

achalasia

Sent: Tuesday, October 28, 2008 3:13:08 AM