New to the group

December 25, 2007

Thanks for the info, . I don't have insurance either, so I only go when absolutely necessary and I'm very picky about who I see because of that. I will call the Arthritis Foundation. God bless!"christina h." <christina-777@...> wrote: AMITY, I AM FROM TULSA ORGINALLY. ST. JOHN'S HAS A WONDERFUL SUPPORT GROUP FOR THOSE SUFFERING FROM FMS. CALL THE LOCAL ARTHRIST FOUNDATION TO FIND OUT WHEN THEY MEET. THEY HAVE A WONDERFUL NETWORK OF DOCTORS. UNFORTUNINATELY I NEVER HAD INSURANCE TO GO

TO THOSE DOCTORS AND CANNOT RECOMMEND ANY OF THE ONES I SAW.Amity Keele <txchristian_gal > wrote: Hello all! I just wanted to introduce myself and say what a blessing it has been to find this group! I have had chronic pain and fatigue for over a year and was just diagnosed with FM about 4 months ago. I've had other common symptoms for many years, such as anxiety and TMJ. I've also had back pain and difficulty getting over viruses since I was a small child - my mother said she was not suprised when I told her about the FM diagnosis. I am 31 years young. My husband is a preacher and I am a homeschool mom. I was THRILLED to wake up this morning to the doctors by state list that was sent out to me as a new member to the group - we just moved to the Tulsa area to

work with a new congregation and I've been searching for a new doctor for a month with no good results. There is one listed nearby, and the MD has CFS herself - I'm SURE she'll understand! I'm going to call her first thing in the morning. THANK YOU to whomever compiled that list! :-)God bless you all, and Merry Christmas!Amity Keele Never miss a thing. Make your homepage.

Looking for last minute shopping deals? Find them fast with Search.

December 26, 2007

Welcome to the group, Amity. Sandie, blessings and prayers. I’ve

been through this with both my parents and empathize.

Our Christmas was wonderful and quiet. There are advantages to having

smallish families! My grandson was so much fun.

Best wishes to all for a HEALTHY and happy new year!

Hall

December 26, 2007

If there is still interest in adding to this list For Indianapolis, IN I would place my doc Saberman... Blessed be LizDominie Bush <dombush@...> wrote: The doctors' list was compiled in 2004 by a group of very dedicated FMS/CFIDS sufferers in a project we called the Million Letter Campaign. You can read about this effort for awareness at http://www.fms-help.com/letter.htm Many

people submitted names of doctors and what they thought of them in regard to treating FMS/CFIDS (those comments are in the last column in each row). The list is organized by state, so it is easy to find what you are looking for. I hope the information is still relatively current. I would imagine that it is. No guarantees are made about these docs, but I felt that the comments from other patients were worthwhile to share.Dominie>> Hello all! I just wanted to introduce myself and say what a blessing it has been to find this group! I have had chronic pain and fatigue for over a year and was just diagnosed with FM about 4 months ago. I've had other common symptoms for many years, such as anxiety and TMJ. I've also had back pain and difficulty getting over viruses

since I was a small child - my mother said she was not suprised when I told her about the FM diagnosis. > > I am 31 years young. My husband is a preacher and I am a homeschool mom. > > I was THRILLED to wake up this morning to the doctors by state list that was sent out to me as a new member to the group - we just moved to the Tulsa area to work with a new congregation and I've been searching for a new doctor for a month with no good results. There is one listed nearby, and the MD has CFS herself - I'm SURE she'll understand! I'm going to call her first thing in the morning. THANK YOU to whomever compiled that list! :-)> > God bless you all, and Merry Christmas!> > Amity Keele> > > ---------------------------------> Never miss a thing. Make your homepage.>

Never miss a thing. Make your homepage.

December 30, 2007

I will have an MRI tomorrow. Then my MD will decide for sure. He has told me he is 90% certain it is AVN and I need a THR. I am a former prednisone user. I hope he is wrong except that I really need to be pain free. I can hardly walk anymore.

Doug

Re: New to the group

Welcome to the group Carol. When is your surgery and what type of prosthesis will you be getting? Deb>> Hi, everybody!> > I just turned 58, and a couple of weeks ago found out that I have > SEVERE osteoarthritis in both hips and so need bilateral > replacements. It's really a relief to know why I've been in so much > pain and why I can't walk straight! I was thinking maybe muscle > atrophy or something, but never dreamed of OA!> > It's very helpful to hear some other experiences; I'm planning to > get some bed risers and move to the chair from my sofa which is > really low now after being collapsed underneath lol. I already got > a raised toilet seat (yesterday) because mine is already too low for > me. It helps in maneuvering, but it's a little strange to get used > to!!> > And I have 5 cats that are like my babies, so I'm hoping I won't > have to be in the hospital long, because I have no one to come feed > them. They can go a couple of days, but wouldn't leave them much > longer. I know I'll have to put feeding dishes and litter boxes up > on something higher - I'm going to try it ahead of time to see if > they will adapt to it!> > Thanks for having me in the group. > Carol in NC>

December 31, 2007

Hi Carol, I'm 59 and had right THR in Aug of 07. I am going to have my left THR Jan 15th. I am very excited to get it done and behind me. My 1st one went very well and am looking forward to this one being just as easy. Well not really EASY , you have to work at physical therapy, but the harder you work the faster you recover. Good luck Kris in CACarol <carolsea2003@...> wrote: Hi,

everybody!I just turned 58, and a couple of weeks ago found out that I have SEVERE osteoarthritis in both hips and so need bilateral replacements. It's really a relief to know why I've been in so much pain and why I can't walk straight! I was thinking maybe muscle atrophy or something, but never dreamed of OA!It's very helpful to hear some other experiences; I'm planning to get some bed risers and move to the chair from my sofa which is really low now after being collapsed underneath lol. I already got a raised toilet seat (yesterday) because mine is already too low for me. It helps in maneuvering, but it's a little strange to get used to!!And I have 5 cats that are like my babies, so I'm hoping I won't have to be in the hospital long, because I have no one to come feed them. They can go a couple of days, but wouldn't leave them much longer. I know I'll have to put feeding dishes and litter boxes up

on something higher - I'm going to try it ahead of time to see if they will adapt to it!Thanks for having me in the group. Carol in NC

January 1, 2008

I would not agree to bilateral/simultaneously done THRs. Most surgeons

would not even recommend this procedure, just in the slim case that

something goes wrong. You need your other leg, albeit painful too, to

help the newly operated one.

Best wishes,

> Hi, everybody!

>

> I just turned 58, and a couple of weeks ago found out that I have

> SEVERE osteoarthritis in both hips and so need bilateral

> replacements. It's really a relief to know why I've been in so much

> pain and why I can't walk straight! I was thinking maybe muscle

> atrophy or something, but never dreamed of OA!

>

> It's very helpful to hear some other experiences; I'm planning to

> get some bed risers and move to the chair from my sofa which is

> really low now after being collapsed underneath lol. I already got

> a raised toilet seat (yesterday) because mine is already too low for

> me. It helps in maneuvering, but it's a little strange to get used

> to!!

>

> And I have 5 cats that are like my babies, so I'm hoping I won't

> have to be in the hospital long, because I have no one to come feed

> them. They can go a couple of days, but wouldn't leave them much

> longer. I know I'll have to put feeding dishes and litter boxes up

> on something higher - I'm going to try it ahead of time to see if

> they will adapt to it!

>

> Thanks for having me in the group.

> Carol in NC

>

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

> Never miss a thing. Make your homepage.

>

January 5, 2008

Welcome to the list !!! I am very glad to have you here :-)Neil's progress sounds fantastic!!! I have had on Ginkgo for a some time now and didn't see anything at first, but she entered 1st grade barely able to print her own first name with a model, to ending it with spelling words and NO models, not even to form the letters. :-) Was it the ginkgo, we'll never know for sure. I am very intrigued with growing brain cells since it's been all the buzz in every science venue out there.I am curious about Dr Mobley's involvement/opinion in this protocol because I had heard, perhaps mistakenly, that he did not agree with the protocol outlined by Changing Minds? If the researchers are seeing progress with this protocol, it would be very helpful to

have such research to hand to our local Drs. I have not studied prozac at all because up until now, I was very sure I was not going to pursue it for , but if there is mounting research and you have a trial going, I may well be very interested. How much research is there right now to support the safety of giving young children prozac for long periods? What would the side effects be? What would happen if you stopped? Does anyone have an educated guess as to the long term affects this is going to have on a person with DS? You mentioned Neil has reached the 'tipping point'. I wonder how many times that can be reached and what happens after that... I know no one knows this, and that of course also worries me. Visions of the movie 'Charlie' dance in my head.Would you please expand on your comments regarding the research for DS stopping with research with clinical trials being very difficult to obtain?

That sounds very disappointing to me and for some reason I had thought that was one thing the Down Syndrome Research and Treatment Foundation was funding. Have they been unable to help you with your trials? Where are the trial taking place? How are the results going to be accepted by the medical community? This protocol would be much more difficult to find a local Dr to help monitor than the use of supplements has been, how are parents obtaing scripts and receiving follow up for their children?I have so many more questions.......I am so very glad you are here. Carol in IL AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - Down Syndrome Treatment/ Listen to oldest dd's music http://www.myspace.com/vennamusic----- Original Message ----From: teresa.cody <teresa.cody@...>Down Syndrome Treatment Sent: Saturday, January 5, 2008 6:28:59 AMSubject: new to the group

Hi All,

My name is Cody and Carol invited me to join this group. Thank

you. We started a new foundation called the Changing Minds

Foundation. It is dedicated to improving the mental abilities of

those with DS. We have started a 6 person clinical study which is

using a group of medications, herbs, and fatty acids. Each chosen for

a specific reason. I would be happy to answer any questions anyone

has on this.

The protocol for the study is:

Ginkgo Biloba

Prozac

Focalin XR

Phosphatidyl Choline

Body Bio Balanced Oil

Folinic acid/B12

A year and a half ago I thought theoretically this should work (my

pediatrician thought so too) but of course I didn't have solid

evidence.(and I will be happy to discuss each piece and why it is

included) Now we are watching the fantastic changes. My son Neal has

been on all of the above for 1 1/2 years and I think he has reached

what I would call the tipping point. What I mean by that is that he

been getting better and better but a slow steady progress and he just

took a huge leap.

Last fall 2006, Neal read on a kindergarten level. In one year, he

advanced at a normal rate and now reads on a 2nd grade level. But

what all of a sudden kicked in was that he can read a paragraph in

the 2nd grade workbook and answer the questions.

The entire fall of 2006, I gave up on adding and subtraction because

I was doing it not him. So all we did every day was count to 100 on

the 100s board and that was very hard for him. In the beginning it

took him an hour to count all those numbers. He couldn't stay

focused. He pronounced 30 and 40 incorrectly as well as 60,70,80

which he pronounced 16,17,18 and then at one point he flipped that.

He only began working on adding and subtracting last Jan. No he can

add and subtract 2 and 3 columns with carry over and borrowing. The

other day I made 3 number columns to solidify that he has to add all

the numbers because sometimes he would carry over and then forget to

add the one. And his response was great after the first problem he

got it. You know when you look at your child and you know they have

it.

I guess that is what I mean by the tipping point. He now gets

concepts. Whereas, before he looked at me blankly.

I will tell you this, this is not magic -it is work. But it is

great!!!!

I know I have met a lot of resistance to the idea that we should

treat the symptoms of DS. I have no idea why we put ourselves in that

position. OK granted no one knew what was going on before a few years

ago but now there is a pretty good bead on what is causing what. The

problem is that the people who understand what is going on

biochemically, physiologically are the researchers. they study mice

in the lab. Dr. Mobley at Stanford has tried to bring it to the

clinic but it will take a long time to get there.

In this country the system is set up that at this point in research

the pharmaceutical company steps in. They will not be interested.

There is nothing to patent and the population is too small. So how do

we get this into practice?

I don't know. I think we as parents have to demand treatment. There

is nothing in this protocol that is difficult. Any neurologist is

capable of following this.

I know this is very long, but that is why we got private funding and

started a small trial. So that we could show improvement so others

may benefit.

I'll be happy to answer and questions.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

January 5, 2008

<<How much research is there right now to support the safety of giving young children prozac for long periods? What would the side effects be? What would happen if you stopped? Does anyone have an educated guess as to the long term affects this is going to have on a person with DS?>>

Certainly nothing scholarly about this comment but I can tell you that kids on the DS-Aut list have been on prozac for many many years. The only common thread seems to be that they need to regularly every year or two switch to an alternate SSRI as Prozac (low dose) seems to lose it's effect. Kids as young as 3 and as old as 43 take it. They often return to prozac later on. I doubt this has much to do with the current discussion..just to point out there is a long history of a large group of kids with DS who have been on SSRIs. As prozac is usually the one medicaid wants you to try first before they will pay for others I would venture a guess that 100s have taken it.

Sherry

January 6, 2008

Hi Carol, I'll do my best to answer your questions. There are a couple of things to realize. The bulk of the funds goes to bench research. There is little to no push to bring any product or treatment to patients. Mobley and crew have discussed setting up clinical trials. But in reality they are bench scientists and don't conduct clinical trials. In this country, pharmaceutical companies pick up the ball at this point. Because nothing is patentable, they will not have any interest. Stanford is interested in a drug called PTZ. They can probably get a 'use' patent. It has the same mechanism as GB with a few differences. It made permanent changes in the brain which might be much better but it is not available. It was pulled off the market in the early 1980s because they had a high incidence of seizures. It is about $100 million to get

a drug passed the FDA. I don't know anyone willing to do that for this population. Prozac: First of all Stanford did not have anything to do w/ the study on the Ts65Dn mouse and prozac. That came out of the University of land. Prozac was approved in 2003 for use in children 6 and up. I will have to go search my files for the studies. I am not talking about giving a perfectly normal child a drug. We are talking about a population that we know have specific problems. One being a significant loss of neurons early and then degeneration hits again fairly early (40s) Forties is early to me. I think if you stopped giving the drug, the patient would be OK for a while but the problems that caused the loss in the first place are still there. So there would be some measurable rate of decline. The side effects are like every ad on TV. Weight loss, weight gain, nausea, vomiting, diahrrea

etc. The good news is they are rare and if they occur - stop taking it and they go away. As far as getting treatment, this is not difficult for most neurologists. I am working on recruiting doctors across the country but that takes time. Carol in IL <ps1272000@...> wrote: Welcome to the list !!! I am very glad to have you here :-)Neil's progress sounds fantastic!!!

I have had on Ginkgo for a some time now and didn't see anything at first, but she entered 1st grade barely able to print her own first name with a model, to ending it with spelling words and NO models, not even to form the letters. :-) Was it the ginkgo, we'll never know for sure. I am very intrigued with growing brain cells since it's been all the buzz in every science venue out there.I am curious about Dr Mobley's involvement/opinion in this protocol because I had heard, perhaps mistakenly, that he did not agree with the protocol outlined by Changing Minds? If the researchers are seeing progress with this protocol, it would be very helpful to have such research to hand to our local Drs. I have not studied prozac at all because up until now, I was very sure I was not going to pursue it for , but if there is mounting research and you have a trial going, I may well be very interested. How

much research is there right now to support the safety of giving young children prozac for long periods? What would the side effects be? What would happen if you stopped? Does anyone have an educated guess as to the long term affects this is going to have on a person with DS? You mentioned Neil has reached the 'tipping point'. I wonder how many times that can be reached and what happens after that... I know no one knows this, and that of course also worries me. Visions of the movie 'Charlie' dance in my head.Would you please expand on your comments regarding the research for DS stopping with research with clinical trials being very difficult to obtain? That sounds very disappointing to me and for some reason I had thought that was one thing the Down Syndrome Research and Treatment Foundation was funding. Have they been unable to help you with your trials? Where are the trial taking place? How are the results going to be accepted by the

medical community? This protocol would be much more difficult to find a local Dr to help monitor than the use of supplements has been, how are parents obtaing scripts and receiving follow up for their children?I have so many more questions.......I am so very glad you are here. Carol in IL AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - Down Syndrome Treatment/ Listen to oldest dd's music http://www.myspace.com/vennamusic new to the group Hi All,My name is Cody and Carol invited me to join this group. Thank you. We started a new foundation called the Changing Minds Foundation. It is dedicated to improving the mental abilities of those with DS. We have started a 6 person clinical study which is using a group of medications, herbs, and fatty acids. Each chosen for a specific reason. I would be happy to answer any questions anyone has on this.The protocol for the study is:Ginkgo

BilobaProzacFocalin XRPhosphatidyl CholineBody Bio Balanced OilFolinic acid/B12A year and a half ago I thought theoretically this should work (my pediatrician thought so too) but of course I didn't have solid evidence.(and I will be happy to discuss each piece and why it is included) Now we are watching the fantastic changes. My son Neal has been on all of the above for 1 1/2 years and I think he has reached what I would call the tipping point. What I mean by that is that he been getting better and better but a slow steady progress and he just took a huge leap. Last fall 2006, Neal read on a kindergarten level. In one year, he advanced at a normal rate and now reads on a 2nd grade level. But what all of a sudden kicked in was that he can read a paragraph in the 2nd grade workbook and answer the questions.The entire fall of 2006, I gave up on adding and subtraction because I was doing it

not him. So all we did every day was count to 100 on the 100s board and that was very hard for him. In the beginning it took him an hour to count all those numbers. He couldn't stay focused. He pronounced 30 and 40 incorrectly as well as 60,70,80 which he pronounced 16,17,18 and then at one point he flipped that. He only began working on adding and subtracting last Jan. No he can add and subtract 2 and 3 columns with carry over and borrowing. The other day I made 3 number columns to solidify that he has to add all the numbers because sometimes he would carry over and then forget to add the one. And his response was great after the first problem he got it. You know when you look at your child and you know they have it. I guess that is what I mean by the tipping point. He now gets concepts. Whereas, before he looked at me blankly. I will tell you this, this is not magic -it is work. But it is great!!!! I

know I have met a lot of resistance to the idea that we should treat the symptoms of DS. I have no idea why we put ourselves in that position. OK granted no one knew what was going on before a few years ago but now there is a pretty good bead on what is causing what. The problem is that the people who understand what is going on biochemically, physiologically are the researchers. they study mice in the lab. Dr. Mobley at Stanford has tried to bring it to the clinic but it will take a long time to get there. In this country the system is set up that at this point in research the pharmaceutical company steps in. They will not be interested. There is nothing to patent and the population is too small. So how do we get this into practice?I don't know. I think we as parents have to demand treatment. There is nothing in this protocol that is difficult. Any neurologist is capable of following this. I know this is very

long, but that is why we got private funding and started a small trial. So that we could show improvement so others may benefit. I'll be happy to answer and questions. Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Never miss a thing. Make your homepage.

January 6, 2008

Welcome to the group, !! Good to have you here .

Qadoshyah

Book ~ Down Syndrome: What You CAN Dowww.gotdownsyndrome.net/Book/whatyoucandobook.html

January 11, 2008

I've thought of having a blood typing kit on hand, so when my son gets a cut or

a nose bleed I could catch some blood and test it since he won't let me just

test him. I don't know if that would work or not.

Go see that naturopath you mentioned and have her (him?) prescribe Armour

thyroid instead of Synthroid. It's natural and much more user friendly. And

while you're there, get advice on the blood type or genotype diet.

New to the group

Hello everyone. This is my second time at tryng the diet. I am

mostly doing this diet to lose weight but I also want to get my family

healthy. Currently I believe that my oldest daughter is O. I am not

sure about my youngest.

Does anyone have any suggestions of how to get your kids blood types.

I have been on the search for recipes. Does anyone have any good

sites for recipes other than the BTD website.

Also does anyone else have thyroid problems?? My friend works for a

natropathic doctor who trained under Dr. D'adamo and she said I should

go off of dairy. I am really considering this. If I can get things

under control I can one day eliminate my medication. Wouldn't that be

awesome. I have been on Synthroid since I was 21. I am now 31 so 10

years of taking a medication has to do something to the rest of your

body. Well I look forward to meeting people in the group.

I wanted to send out a suggestion of a book that I found. It is

called Preserving the Summer Bounty. It is published by Rodale.

There are a lot of recipes in the book that we can use on our diet.

Jenni

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

January 11, 2008

There are home typing kits. My health food store carries them or you should

be able to find them online.

Definitely get off the dairy.

I don't have suggestions on recipes, I just get the right foods and cook

very basic and simply.

Natural stuff for thyroid (besides inproved diet) are kelp and thyroid

glandulars from the health food store.

Armour thyroid from the docs is natural also.

And my favorite super healthy meal is " green smoothies " .

Just found this pretty good book, " Green for Life "

http://www.rawfoodinfo.com/catalog/books_GreenForLife.html

Kathy

On Jan 9, 2008 9:04 AM, jenn77182000 <schafran4@...> wrote:

> Hello everyone. This is my second time at tryng the diet. I am

> mostly doing this diet to lose weight but I also want to get my family

> healthy. Currently I believe that my oldest daughter is O. I am not

> sure about my youngest.

> Does anyone have any suggestions of how to get your kids blood types.

>

> I have been on the search for recipes. Does anyone have any good

> sites for recipes other than the BTD website.

>

> Also does anyone else have thyroid problems?? My friend works for a

> natropathic doctor who trained under Dr. D'adamo and she said I should

> go off of dairy. I am really considering this. If I can get things

> under control I can one day eliminate my medication. Wouldn't that be

> awesome. I have been on Synthroid since I was 21. I am now 31 so 10

> years of taking a medication has to do something to the rest of your

> body. Well I look forward to meeting people in the group.

>

> I wanted to send out a suggestion of a book that I found. It is

> called Preserving the Summer Bounty. It is published by Rodale.

> There are a lot of recipes in the book that we can use on our diet.

>

> Jenni

>

--

Cheers,

Kathy

January 11, 2008

Welcome Jenni, and thank you for the book title.

New to the group

Hello everyone. This is my second time at tryng the diet. I am

mostly doing this diet to lose weight but I also want to get my family

healthy. Currently I believe that my oldest daughter is O. I am not

sure about my youngest.

Does anyone have any suggestions of how to get your kids blood types.

I have been on the search for recipes. Does anyone have any good

sites for recipes other than the BTD website.

Also does anyone else have thyroid problems?? My friend works for a

natropathic doctor who trained under Dr. D'adamo and she said I should

go off of dairy. I am really considering this. If I can get things

under control I can one day eliminate my medication. Wouldn't that be

awesome. I have been on Synthroid since I was 21. I am now 31 so 10

years of taking a medication has to do something to the rest of your

body. Well I look forward to meeting people in the group.

I wanted to send out a suggestion of a book that I found. It is

called Preserving the Summer Bounty. It is published by Rodale.

There are a lot of recipes in the book that we can use on our diet.

Jenni

January 11, 2008

Kathy,

I have a copy of Green for Life from the library, and my copy shouldbe

at the bookstore by now, though it will be the last of next week before

I can pick it up. The dentist saw an improvement in my gums she had

never seen before. I don't know how much the smoothies had to do with

it.

January 14, 2008

Hi gary,

I'm also post TT, RAI ablation. Iodoral does so much more. It helps our whole system work better. I was taking 35units of basal insulin a day and after Iodoral, I went down to 18 units. Iodoral helps receptors in places other than the thyroid we don't have.

in OH

1965 TT

1982 RAI

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

From: grrich2763

Sent: Monday, January 14, 2008 5:15 AM

Thank you in advance, I am new, and need to read up more I guess. I am 8 years post thyroidectomy w/ablation, also have had prostatecancer, and successfully treated 2 years ago. I took Lugol's forawhile, but unclear what benefits it has for me since I don't producemy own thyroid anymore?? Thyroid levels, and stabilization has neverbeen good, and still struggling. Endo is pretty closed minded to mostanything outside her realm, I believe.

January 17, 2008

It would be much more helpful to all the newbies, including myself,

if initials were not used in the place of real words for better

understanding. Just a thought. Kathy

>

> Hi gary,

>

> I'm also post TT, RAI ablation. Iodoral does so much more. It

helps our whole system work better. I was taking 35units of basal

insulin a day and after Iodoral, I went down to 18 units. Iodoral

helps receptors in places other than the thyroid we don't have.

>

> in OH

> 1965 TT

> 1982 RAI

> ----- Original Message -----

> From: grrich2763

> Sent: Monday, January 14, 2008 5:15 AM

>

> Thank you in advance, I am new, and need to read up more I

guess. I am 8 years post thyroidectomy w/ablation, also have had

prostate

> cancer, and successfully treated 2 years ago. I took Lugol's for

> awhile, but unclear what benefits it has for me since I don't

produce

> my own thyroid anymore?? Thyroid levels, and stabilization has

never

> been good, and still struggling. Endo is pretty closed minded

to most

> anything outside her realm, I believe.

>

January 17, 2008

TT= Total thyroidectomy

RAI - RadioActive Iodine, used to ablate (kill) thyroid cancer.

Re: New to the Group

It would be much more helpful to all the newbies, including myself, if initials were not used in the place of real words for better understanding. Just a thought. Kathy>> Hi ,> > I'm also post TT, RAI ablation. Iodoral does so much more. It helps our whole system work better. I was taking 35units of basal insulin a day and after Iodoral, I went down to 18 units. Iodoral helps receptors in places other than the thyroid we don't have. > > in OH> 1965 TT> 1982 RAI

February 26, 2008

Robin,

Where in upstate NY are you?

I am also from upstate NY - near Binghamton.

in NY

New to the group

achalasia

> I joined this site a couple of days ago and the emails of postings

> is

> astounding! Thank you all for caring so much for each other. I

> too

> have FINALLY been diagnosed with " A " . I have been trying to find

> an

> answer for almost two years. Of course symptoms have been going

> on

> for long before that but when I couldn't swallow water I got

> excited

> and went to the doctor. I have been to more doctors than I can

> even

> start to explain. I am set up with the Mayo in Minnesota in 3

> weeks. It is a trip and a half as I am from upstate NY but I know

> that I need to see someone versed in what this is and how to do

> the

> surgery. I have had dialations, stretching, medications, you name

> it. I am excited that there is a place I can finally go that can

> fix

> this aweful thing. I wish I had known the name of my problem and

> been on this site a long time ago. When I first went to the

> doctor

> with this they found I had stomach cancer and had to take care of

> that first. The radiation oncologist saw the sphincter muscle was

> closed so radiated that as well trying to open it up. Well it

> made

> it worse and I can hardly swallow at all now. I have been seeing

> doctors in Westchester, NY and they are stumped with what to do

> and

> how to go about doing it. They finally brought in a team and did

> the

> monotomy (sp) and were agasped at what they were looking at. They

> sent all results out to Calif. and it came back with achalasia

> with a

> few other problems. So...off to Mayo to get the surgery and

> hopefully the other problems will go away with that surgery. I am

> a

> bit scared with what to expect and have no idea of what the

> recovery

> consists of. Mayo cannot answer questions until I get there...so

> I

> was hoping that you people can enlighten me as to what I can

> expect.

> I am so looking forward to getting my life back. I used to be

> very

> active and now it is a chore to do anything as I have no energy left.

> Thank you for listening to me and looking forward to hearing from

> anyone with any information to calm this " a " person! Robin

>

February 26, 2008

Hi , I live south of albany near kingston. It took me awhile

to figure out how to reply..sorry. First timer on a message board.

>

> Robin,

> Where in upstate NY are you?

> I am also from upstate NY - near Binghamton.

> in NY

>

> New to the group

> achalasia

>

> > I joined this site a couple of days ago and the emails of

postings

> > is

> > astounding! Thank you all for caring so much for each other. I

> > too

> > have FINALLY been diagnosed with " A " . I have been trying to find

> > an

> > answer for almost two years. Of course symptoms have been going

> > on

> > for long before that but when I couldn't swallow water I got

> > excited

> > and went to the doctor. I have been to more doctors than I can

> > even

> > start to explain. I am set up with the Mayo in Minnesota in 3

> > weeks. It is a trip and a half as I am from upstate NY but I

know

> > that I need to see someone versed in what this is and how to do

> > the

> > surgery. I have had dialations, stretching, medications, you

name

> > it. I am excited that there is a place I can finally go that can

> > fix

> > this aweful thing. I wish I had known the name of my problem and

> > been on this site a long time ago. When I first went to the

> > doctor

> > with this they found I had stomach cancer and had to take care of

> > that first. The radiation oncologist saw the sphincter muscle

was

> > closed so radiated that as well trying to open it up. Well it

> > made

> > it worse and I can hardly swallow at all now. I have been seeing

> > doctors in Westchester, NY and they are stumped with what to do

> > and

> > how to go about doing it. They finally brought in a team and did

> > the

> > monotomy (sp) and were agasped at what they were looking at.

They

> > sent all results out to Calif. and it came back with achalasia

> > with a

> > few other problems. So...off to Mayo to get the surgery and

> > hopefully the other problems will go away with that surgery. I

am

> > a

> > bit scared with what to expect and have no idea of what the

> > recovery

> > consists of. Mayo cannot answer questions until I get there...so

> > I

> > was hoping that you people can enlighten me as to what I can

> > expect.

> > I am so looking forward to getting my life back. I used to be

> > very

> > active and now it is a chore to do anything as I have no energy

left.

> > Thank you for listening to me and looking forward to hearing from

> > anyone with any information to calm this " a " person! Robin

> >

>

February 26, 2008

hey Robin - hello to a fellow NY'er. I live in NC now but I'm from

the Albany area. Glad you found us and got a diagnosis (finally).

Can I ask why you're going to Minnesota? There are excellent surgeons

that we can recommend - from personal experience - that are much

closer to you.

Dr. Luketich just did surgery for me. He's at the University of

Pittsburgh Medical Center and

Dr. Rice is at the Cleveland Clinic, and many others

have used him and been very satisfied.

Both of them are heads of surgery at major facilities with swallowing

disorders clinics. They both have a tremendous amount of experience

with A and esophageal surgery.

Do whatever you are comfortable with, I just wanted you to have some

good options that may be more convenient for you.

Keep us posted on what you do.

Take care,

- in NC

>

> I joined this site a couple of days ago and the emails of postings

is

> astounding! Thank you all for caring so much for each other. I

too

> have FINALLY been diagnosed with " A " . I have been trying to find

an

> answer for almost two years. Of course symptoms have been going on

> for long before that but when I couldn't swallow water I got

excited

> and went to the doctor. I have been to more doctors than I can

even

> start to explain. I am set up with the Mayo in Minnesota in 3

> weeks. It is a trip and a half as I am from upstate NY but I know

> that I need to see someone versed in what this is and how to do the

> surgery. I have had dialations, stretching, medications, you name

> it. I am excited that there is a place I can finally go that can

fix

> this aweful thing. I wish I had known the name of my problem and

> been on this site a long time ago. When I first went to the doctor

> with this they found I had stomach cancer and had to take care of

> that first. The radiation oncologist saw the sphincter muscle was

> closed so radiated that as well trying to open it up. Well it made

> it worse and I can hardly swallow at all now. I have been seeing

> doctors in Westchester, NY and they are stumped with what to do and

> how to go about doing it. They finally brought in a team and did

the

> monotomy (sp) and were agasped at what they were looking at. They

> sent all results out to Calif. and it came back with achalasia with

a

> few other problems. So...off to Mayo to get the surgery and

> hopefully the other problems will go away with that surgery. I am

a

> bit scared with what to expect and have no idea of what the

recovery

> consists of. Mayo cannot answer questions until I get there...so I

> was hoping that you people can enlighten me as to what I can

expect.

> I am so looking forward to getting my life back. I used to be very

> active and now it is a chore to do anything as I have no energy

left.

> Thank you for listening to me and looking forward to hearing from

> anyone with any information to calm this " a " person! Robin

>

February 26, 2008

Hey - I lived in the Albany area for a while too, and that's

where my hubby's family is from - Clifton Park area north of Albany.

Where abouts were you from around Albany? That's so funny - what a

small world.

Love,

in NY

Re: New to the group

achalasia

> hey Robin - hello to a fellow NY'er. I live in NC now but I'm from

> the Albany area. Glad you found us and got a diagnosis (finally).

> Can I ask why you're going to Minnesota? There are excellent

> surgeons

> that we can recommend - from personal experience - that are much

> closer to you.

> Dr. Luketich just did surgery for me. He's at the University

> of

> Pittsburgh Medical Center and

> Dr. Rice is at the Cleveland Clinic, and many others

> have used him and been very satisfied.

> Both of them are heads of surgery at major facilities with

> swallowing

> disorders clinics. They both have a tremendous amount of

> experience

> with A and esophageal surgery.

> Do whatever you are comfortable with, I just wanted you to have

> some

> good options that may be more convenient for you.

> Keep us posted on what you do.

>

> Take care,

> - in NC

>

> >

> > I joined this site a couple of days ago and the emails of

> postings

> is

> > astounding! Thank you all for caring so much for each other. I

> too

> > have FINALLY been diagnosed with " A " . I have been trying to

> find

> an

> > answer for almost two years. Of course symptoms have been going

> on

> > for long before that but when I couldn't swallow water I got

> excited

> > and went to the doctor. I have been to more doctors than I can

> even

> > start to explain. I am set up with the Mayo in Minnesota in 3

> > weeks. It is a trip and a half as I am from upstate NY but I

> know

> > that I need to see someone versed in what this is and how to do

> the

> > surgery. I have had dialations, stretching, medications, you

> name

> > it. I am excited that there is a place I can finally go that

> can

> fix

> > this aweful thing. I wish I had known the name of my problem

> and

> > been on this site a long time ago. When I first went to the

> doctor

> > with this they found I had stomach cancer and had to take care

> of

> > that first. The radiation oncologist saw the sphincter muscle

> was

> > closed so radiated that as well trying to open it up. Well it

> made

> > it worse and I can hardly swallow at all now. I have been

> seeing

> > doctors in Westchester, NY and they are stumped with what to do

> and

> > how to go about doing it. They finally brought in a team and

> did

> the

> > monotomy (sp) and were agasped at what they were looking at.

> They

> > sent all results out to Calif. and it came back with achalasia

> with

> a

> > few other problems. So...off to Mayo to get the surgery and

> > hopefully the other problems will go away with that surgery. I

> am

> a

> > bit scared with what to expect and have no idea of what the

> recovery

> > consists of. Mayo cannot answer questions until I get

> there...so I

> > was hoping that you people can enlighten me as to what I can

> expect.

> > I am so looking forward to getting my life back. I used to be

> very

> > active and now it is a chore to do anything as I have no energy

> left.

> > Thank you for listening to me and looking forward to hearing

> from

> > anyone with any information to calm this " a " person! Robin

> >

>

February 26, 2008

WOW - I grew up and went to high school in Rhinebeck - I totally know

where Kingston is. What a small world. I still have family in Tivoli

and Stanfordville and come to the area occasionally.

As for your treatment, if you are willing to do a little driving, I

can recommend two very well known, very experienced surgeons.

One is Dr. Rice at The Cleveland Clinic in OH. He is one of the

top in the country. I had my esophagectomy there last March and am

doing fabulous. Many on this board go to him and can give excellent

reviews. The drive for us (near Binghamton) is about 5 1/2 hours, so

for you it would be closer to 8 hours. But well worth it. There are

people that travel from VA and further to see him. I know another

woman who came from New Mexico last year to see him.

Another is Dr. s at Strong Memorial in Rochster, NY. He

used to be a big wig out at USC in CA, but relocated here several

years ago. I have seen him as well for an initial consult before going

to Dr. Rice. Nothing at all wrong with him either, I just wasn't ready

mentally at the time to proceed with the 'ectomy, so I waited a few

years, did more research, came to terms with things and went with Dr.

Rice.

Please don't take any of this as knocking Mayo Clinic - that is not my

intention. I am just trying to offer up some other alternatives for

you. I believe has also added Dr. Luketich in Pittsburgh to

the list - I have not seen him but did contact his office when I was

looking around. I would have probably followed through but was happy

with the opinions I got from Dr. s and then ultimately Dr. Rice,

so I never pursued Dr. Luketich, but he is also well-known and very

good.

in NY

New to the group

> > achalasia

> >

> > > I joined this site a couple of days ago and the emails of

> postings

> > > is

> > > astounding! Thank you all for caring so much for each other.

> I

> > > too

> > > have FINALLY been diagnosed with " A " . I have been trying to

> find

> > > an

> > > answer for almost two years. Of course symptoms have been

> going

> > > on

> > > for long before that but when I couldn't swallow water I got

> > > excited

> > > and went to the doctor. I have been to more doctors than I

> can

> > > even

> > > start to explain. I am set up with the Mayo in Minnesota in 3

> > > weeks. It is a trip and a half as I am from upstate NY but I

> know

> > > that I need to see someone versed in what this is and how to

> do

> > > the

> > > surgery. I have had dialations, stretching, medications, you

> name

> > > it. I am excited that there is a place I can finally go that

> can

> > > fix

> > > this aweful thing. I wish I had known the name of my problem

> and

> > > been on this site a long time ago. When I first went to the

> > > doctor

> > > with this they found I had stomach cancer and had to take care

> of

> > > that first. The radiation oncologist saw the sphincter muscle

> was

> > > closed so radiated that as well trying to open it up. Well it

> > > made

> > > it worse and I can hardly swallow at all now. I have been

> seeing

> > > doctors in Westchester, NY and they are stumped with what to

> do

> > > and

> > > how to go about doing it. They finally brought in a team and

> did

> > > the

> > > monotomy (sp) and were agasped at what they were looking at.

> They

> > > sent all results out to Calif. and it came back with achalasia

> > > with a

> > > few other problems. So...off to Mayo to get the surgery and

> > > hopefully the other problems will go away with that surgery.

> I

> am

> > > a

> > > bit scared with what to expect and have no idea of what the

> > > recovery

> > > consists of. Mayo cannot answer questions until I get

> there...so

> > > I

> > > was hoping that you people can enlighten me as to what I can

> > > expect.

> > > I am so looking forward to getting my life back. I used to be

> > > very

> > > active and now it is a chore to do anything as I have no

> energy

> left.

> > > Thank you for listening to me and looking forward to hearing

> from

> > > anyone with any information to calm this " a " person! Robin

> > >

> >

>

February 26, 2008

Dr. Richter is another one that is on the east coast! He

use to be at Cleveland Clinic but moved on to another position.

From:

achalasia [mailto:achalasia ] On Behalf Of tracylb@...

Sent: Tuesday, February 26, 2008 12:13 PM

achalasia

Subject: Re: Re: New to the group