For

[Guest guest]

Hi - I live in Long Island and was wondering if you could give me the

name of the store in Massapequa that you bought the fresh bread from. I'd

love to try it.

THanks,

Pam ( 's Mom)

[Guest guest]

,

I would not even attemept to tell you info about medications that you should

take. I would be happry to tell you what my husband takes, which is

different than many others on this list.

My response to your request concerns your desire to see Dr. on. I do

hope that you can see him. He is thorough, knowledgeable, and very

pleasant. It may be that you will actually see others in his research

facility, but you will be treated well.

We live about 1 1/2 hours from Vanderbilt. If you should come to Nashville,

I will be happy to assist you and/or your family if timing works out for

both of us.

Marilyn in TN

[Guest guest]

,

I would not even attemept to tell you info about medications that you should

take. I would be happry to tell you what my husband takes, which is

different than many others on this list.

My response to your request concerns your desire to see Dr. on. I do

hope that you can see him. He is thorough, knowledgeable, and very

pleasant. It may be that you will actually see others in his research

facility, but you will be treated well.

We live about 1 1/2 hours from Vanderbilt. If you should come to Nashville,

I will be happy to assist you and/or your family if timing works out for

both of us.

Marilyn in TN

[Guest guest]

,

I would not even attemept to tell you info about medications that you should

take. I would be happry to tell you what my husband takes, which is

different than many others on this list.

My response to your request concerns your desire to see Dr. on. I do

hope that you can see him. He is thorough, knowledgeable, and very

pleasant. It may be that you will actually see others in his research

facility, but you will be treated well.

We live about 1 1/2 hours from Vanderbilt. If you should come to Nashville,

I will be happy to assist you and/or your family if timing works out for

both of us.

Marilyn in TN

[Guest guest]

Marilyn,

Thanks for your gracious offer to help. My husband will be

accompanying me. Also, he graduated from Castle Heights Military

Academy there in Lebanon, which is no longer. Where do you live? We

are in a suburb of Little Rock. I DO hope I get to see Dr. on

himself, I guess I would be disappointed if I don't get to. I am also

from a family with a large number of Roberston's that came into AR

from TN, in fact my dad's middle name was on. I am just glad

that there are more meds out there that could maybe eventually help

me, I've tried so many at this point.

Hugs,

Valarie

[Guest guest]

We live 1 1/2 hours south of Nashville, but would certainly like to meet

others who are dealing with similar problems. If You are interested, I will

be happy to provide my home phone number. We live down I-24 toward, but not

near Chattanooga. You actually leave 1-24 at Hwy 55 and then travel west to

Tullahoma. You might want to see our newest piece of equpment a lift

anchored to our ceiling. We might could meet you in Nashville for lunch,

whatever. All of this depends upon the weather, which can change quickly in

TN.

My husband was actually a patient for about 5 days in an in house program at

Vanderbilt. At first Vandy wanted 7 days and the insurance compnay would

only approve 3. Then there was some comprimise and he was there 5 days. If

you're actually a patient they will work with him from morning to late

evening/night to get all of the test covered.

Marilyn in TN

[Guest guest]

Dear ,

Thanks for your gracious reply! No need to explain your status at the

UMDF convention. It was obvious that you were not feeling well at all.

You sandwiched the UMDF convention in between two Cleveland Clinic

admssions, which I truly wished had been able to give you some solutions

for your many gi problems, and for frequent infections.

Please keep holding onto hope, and try to get the necessary calories you

need to fight the mito dragon in your body, .

I hope and pray that Nikki's post will buoy your spirit! She has come

such a very

long way, and I know that she has the love and support of a wonderful

family, as you do. (Please convey my warmest greetings to your parents,

who are awesome..)

You know how much we all care for one another here on Mitoldies. When

someone is down, another will step up to the plate, offering love--and

many prayers. And so it goes. I hope that before long it will be your

chance to be doing better, .

I send you love and prayers--for answers and medical solutions.

[Guest guest]

Dear ,

Thanks for your gracious reply! No need to explain your status at the

UMDF convention. It was obvious that you were not feeling well at all.

You sandwiched the UMDF convention in between two Cleveland Clinic

admssions, which I truly wished had been able to give you some solutions

for your many gi problems, and for frequent infections.

Please keep holding onto hope, and try to get the necessary calories you

need to fight the mito dragon in your body, .

I hope and pray that Nikki's post will buoy your spirit! She has come

such a very

long way, and I know that she has the love and support of a wonderful

family, as you do. (Please convey my warmest greetings to your parents,

who are awesome..)

You know how much we all care for one another here on Mitoldies. When

someone is down, another will step up to the plate, offering love--and

many prayers. And so it goes. I hope that before long it will be your

chance to be doing better, .

I send you love and prayers--for answers and medical solutions.

[Guest guest]

Dear ,

Thanks for your gracious reply! No need to explain your status at the

UMDF convention. It was obvious that you were not feeling well at all.

You sandwiched the UMDF convention in between two Cleveland Clinic

admssions, which I truly wished had been able to give you some solutions

for your many gi problems, and for frequent infections.

Please keep holding onto hope, and try to get the necessary calories you

need to fight the mito dragon in your body, .

I hope and pray that Nikki's post will buoy your spirit! She has come

such a very

long way, and I know that she has the love and support of a wonderful

family, as you do. (Please convey my warmest greetings to your parents,

who are awesome..)

You know how much we all care for one another here on Mitoldies. When

someone is down, another will step up to the plate, offering love--and

many prayers. And so it goes. I hope that before long it will be your

chance to be doing better, .

I send you love and prayers--for answers and medical solutions.

[Guest guest]

Morning ...

A Primary Care Physicians Guide...The Spectrum of Mitochondrial

Disease K Naviaux MD PhD

Disorders Sometimes Associated with Mitochondrial Dysfunction....

states in black and white autoimmune .. Systemic Lupus

Erythematosis...

The list of autoimmune illness in this guide is really a bit out

dated now things are moving so fast with Mito.Cyto.... wish my body

would !!!!

Found a mega down load that I need to really read through...Mito

illness is also on one of the Spastic Paraplegia genes..treatable

with plasmaparesis and pace maker..that one carries very high IgG

antibodies involvement which is definitly autoimmune driven as IgG

seems to be involved in demyelination.....CIDP can be a

manifestation of Mito.cyto.

I see it here, I see it there, I see that word Mitochondrial

everywhere !!!!

Gillian

> Gillian,

> have you ever run across any info linking Mito or FODS to other

autoimmune

> disorders such as Lupus?

> Thanks

>

>

>

[Guest guest]

Thanks for the feedback. (no

pun, intended)

Like I said earlier, I am in

the very beginning stages of researching and talking with Drs. My OB/GYN told

me that it is done outside Kaiser and they have a team …and the wait is

not long AND they will probably require me to lose 20 lbs. No sweat of 20, it’s

after 30 I can’t seem to do.

Unfortunately, I have some

things to take care of first. An Endormetrial Biopsy…….Mammo,……..Sigmoidoscopy………(joy)……………but,

I have an appointment next Friday with my Internist and I am hoping I can at

least get the ball rolling and have some dialogue explaining the procedure here

in the Washington, DC area.

Thanks, again. I could live

with a pannelectomy!

From: Diane

Duenas

Sent: Friday, March 11, 2005 11:10

AM

To: gastric-bypass-support-kaiser-patients

Subject:

For

Hi

WOW lots of questions LOL!!

First off you dont feel as physically hungry post

op but the head

hunger is still there. It can sometimes be

frustrating being in a

room full of people who are eating whatever they

want and you are

done with one or two bites. That is where losing

the 10% helps alot,

by that time you have gotten used to eating

differently.

I have had reconstructive surgery. Kaiser covered

my tummy

tuck..well pannelectomy...its somewhat different

than an actual

tummy tuck. But they only cover it for very strict

medical reasons

that they dont tell you. I was barely qualified

for Kaiser to cover

mine. They did my arms at the same time, but I had

to pay for it. I

want my thighs done but cant afford it. My pain

was actually less

than my RNY, maybe due to being in better shape??

Dr Fisher had

warned me that it would be worse but it wasnt.

Maybe expecting the

worse made it seem better??

Huggles

> Yes, people who are not in the " get

healthier " mode are great at

sabotaging

> our efforts. My mother (God rest her

soul) used to complain about

my weight

> and then dinner would be the most fattening

and unhealthy

combination of

> foods. I don't think it was ever

intentional. My husband is

another one to

> sabotage, but I take responsibility for it,

since he really thinks

he is

> doing something nice and I usually succumb to

the treat

temptation.

>

>

>

> I have a long way to go before any surgery,

if at all, but I am

going to

> have my husband read everything so he

understands what will be

happening.

> Sabotaging my efforts in the future could

have very grim results

and he

> needs to know that.

>

>

>

> Can anyone tell me if you FEEL less hungry

after the surgery. The

wls

> obviously works, but do you still desire lots

of food or does the

brain know

> you are full, better than prior to the

surgery?

>

>

>

> Also, anyone here who has lost a large amount

of weight...in

excess of 100

> pounds. How is the loose skin?

Has anyone had the reconstructive

surgery

> and if so, is this something that Kaiser

allows? I am not

deterred, even if

> they don't allow it...hell, I can live with

flab a hell of a lot

easier than

> what I have now..just curious. Also, if

anyone HAS had

reconstructive

> surgery...how painful is it. It looks

HORRIBLY painful on all the

tv shows

> I have watched!

>

>

>

>

>

> _____

>

> From: topazmisskitty

[mailto:topazmisskitty@y...]

> Sent: Wednesday, March 09, 2005 11:38 PM

> To: gastric-bypass-support-kaiser-patients

> Subject:

Jealousy and

Sabotage

>

>

>

>

> Okay, I warned you all I had a long post

coming.

>

> Easy question...have any of you found that

once the circle around

you

> (friends, co-workers, family) knew you were

taking the step they

> began to sabotage you? Pass by with the

newly opened box of Girl

> Scout Cookies, " would you like

one? " " We are going out for pizza,

> wan't to come? " " I brought in

donuts, help yourself!!