Hello everyone

[Guest guest]

I want you to know how much I appreciate this site. Since joining I

check my mail every day. I enjoy reading your emails and I find them

very helpful. I also enjoy the monday night chat group. This all has

been a big help for me. I just wish I knew where I stand with this

melas, still no cocktails as you call them,but I am still hanging in

there. Trying to learn how far to go with myself, so I don't hurt all

the time. Well, anyway, I have read some where,about this symptom.

Just not sure if mito article, or hypothyroid article, so forgive me,

cause the dementia is getting awful. I have been getting a burning

sensation in my chest. sometimes I wish I had a ice pack to put on it

to stop the burning feeling. It goes away, but I did read it somewhere

that people do get this burning feeling. I am constantly hot 90% of

the time. My temperature valve has busted I guess. I can not tolerate

heat at all. But this is a definite burning/hot spot issue. Can

someone relate to this?

[Guest guest]

Snow

Have you been checked for Reflux Disease. Many with mito have it.

laurie

> I want you to know how much I appreciate this site. Since joining I

> check my mail every day. I enjoy reading your emails and I find them

> very helpful. I also enjoy the monday night chat group. This all has

> been a big help for me. I just wish I knew where I stand with this

> melas, still no cocktails as you call them,but I am still hanging in

> there. Trying to learn how far to go with myself, so I don't hurt all

> the time. Well, anyway, I have read some where,about this symptom.

> Just not sure if mito article, or hypothyroid article, so forgive me,

> cause the dementia is getting awful. I have been getting a burning

> sensation in my chest. sometimes I wish I had a ice pack to put on it

> to stop the burning feeling. It goes away, but I did read it somewhere

> that people do get this burning feeling. I am constantly hot 90% of

> the time. My temperature valve has busted I guess. I can not tolerate

> heat at all. But this is a definite burning/hot spot issue. Can

> someone relate to this?

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

>

>

[Guest guest]

Thanks for your response. I had a muscle biopsy, and

followed up by blood work, and a prefious MRI all

pointed to Melas. A neurologist I have been seeing for

5 years now is treating me, cause of other

neuro.problems as well.Biopsy was done in the hospital

by another neuro specialist.This burning appears for

no reason, even if I am not hot at that moment. It's

generally in one location, doesn't spread either.A hot

spot like I had something hot resting on that spot and

need to put ice on it to cool it off.

--- peetie peetie@...> wrote:

> Hi,

>

> I am glad that you are finding our group to be so

> helpful and enjoy reading the emails.

>

> First I don't remember how you were diagnosed with

> MELAS. What doctor gave you your diagnosis? Did you

> have a fresh muscle biopsy? If so where was it done?

>

>

>

> The burning sensation in your chest:

> I remember reading exactly what you read and it came

> from a link that Joanne(a member here) had put in an

> email she sent to the list. The list was discussing

> hypothyroid/parathyroid and Mito. I don't have the

> link available but maybe someone saved it and can

> repost it for you.

>

> It is hard to pace yourself with Mito disease. I

> know I do things that I shouldn't do, but I would

> lose out on so much if I listened to my body all the

> time. I sleep for 18 hours a day, and have been for

> almost 3 yrs. now. I am not sleeping that long by

> choice, but b/c my body tells me to.

> I think that you need to pace yourself as much as

> possible, but if you know that you have an

> engagement coming up, or a full day of testing or

> medical appointments you can make sure to get more

> rest before that day. And if you do overdo it plan

> on your body hurting and your energy level being low

> for the next few days. Some people react to

> overdoing it the next day and others don't feel it

> until a day or 2 later, depends on your body.

>

> You stated that you are always hot. I know that I

> can't regulate my body temperature, my Mito doctor

> calls this autonomic dysregulation. I know alot of

> Mito people who have this. So you are not alone, a

> lot of us have busted thermostats!!

>

> Is the burning in you chest related to your being

> hot all the time? or is it a separate issue?

>

> Hugs,

> Ann-Marie

>

> Hello everyone

>

>

> I want you to know how much I appreciate this

> site. Since joining I

> check my mail every day. I enjoy reading your

> emails and I find them

> very helpful. I also enjoy the monday night chat

> group. This all has

> been a big help for me. I just wish I knew where I

> stand with this

> melas, still no cocktails as you call them,but I

> am still hanging in

> there. Trying to learn how far to go with myself,

> so I don't hurt all

> the time. Well, anyway, I have read some

> where,about this symptom.

> Just not sure if mito article, or hypothyroid

> article, so forgive me,

> cause the dementia is getting awful. I have been

> getting a burning

> sensation in my chest. sometimes I wish I had a

> ice pack to put on it

> to stop the burning feeling. It goes away, but I

> did read it somewhere

> that people do get this burning feeling. I am

> constantly hot 90% of

> the time. My temperature valve has busted I guess.

> I can not tolerate

> heat at all. But this is a definite burning/hot

> spot issue. Can

> someone relate to this?

>

>

>

>

>

> Medical advice, information, opinions, data and

> statements contained herein are not necessarily

> those of the list moderators. The author of this e

> mail is entirely responsible for its content. List

> members are reminded of their responsibility to

> evaluate the content of the postings and consult

> with their physicians regarding changes in their own

> treatment.

>

> Personal attacks are not permitted on the list and

> anyone who sends one is automatically moderated or

> removed depending on the severity of the attack.

>

>

>

>

>

[Guest guest]

Hi Josie,

I am new too but I wanted to welcome you. I am planning on starting my

sons (twins-- is autism spectrum and I think/hope Caleb is NT)

as soon as we get back from vacation in a couple of weeks. I've been

collecting and trying new foods and have eliminated all those grains

(still have some supplements I am working on and the boys are eating

beans that haven't been soaked). We have been gf/cf (and soy) for

about 9 months. I just knew in my gut that eating all the carbs,

though they were gluten free, weren't healthy for my son. It took me

forever to find SCD and know for sure it wasn't in my head!

I'm sorry you had a rough day. I have been in similar situations

myself--makes me want to lock us all away sometimes! When is

home it just isn't so obvious and I've come home many times in tears

myself. Sending hugs your way...

le

(AS) and Caleb (NT), 27 months...on gf/cf/sf moving to SCD

[Guest guest]

Josie,

My heart goes out to you. My son was dx 3 years ago just a week

before his 2nd birthday. I wish I had known about SCD then....he's doing really

well with it. I really just wanted to tell you that our family is definitely

affected by our son's autism, yet so much of it is positive now. It was really

tough at first but is so sweet and just adorable. He gives these great

big wet kisses and just this evening he walked over to where I was hugging big

sister (7 years old) and he started hugging her too. I wish things weren't so

hard for but I couldn't love him more than I do!!! People will tell us

" I'm sorry " if we explain has autism and this actually suprises us. We

tell them " oh, no. He's a great kid " So hang in there. There's a poem called

" Trip to Holland " written by a mother of a special needs child. It's really

sweet...if you do a search you can find it on multiple sites. Take care!!!

Deanna

peter standley wrote:

Hi, I wanted to introduce myself as I've been reading with interest

all the posts here for almost a week now My name is Josie and I live

with my partner and my 2 sons Kai (5 N.T ) and Jay ( asd 3 ).

We live in notinghamshire in U.K. Jay was diagnosed with autism in

January this year, we found out after frantic research on the

internet about the gfcf diet and at the same time tried to find a

good homeopath experienced with treating autism. The diet was

implemented in February but immediately despite improvements inJay

with eye contact etc and recovering the few words he had lost the use

of , it felt wrong, really wrong to be using all the gfcf flours and

processed substitutes. I still have a jar of gfcf cheese sauce that I

couldn't bear to open! Before jay was diagnosed we had as a family a

really " healthy " diet or so I thought! We bought our food all

organic and fresh, milled our own organic spelt flour to make our

bread, limited dairy intake etc but that all changed after the

diagnosis. So, I remembered a book that a friends of ours had in

Greece ( we lived there for over 15 years ) called nourishing

traditions and got a copy for myself, initially I was hoping that I

could still make my own flour etc and that by soaking the grains I

would be able to avoid all the gfcf flour but it seems at least for

now that isn't possible. Then I came across Dr. Natasha Cambell

McBride and heard ( via the internet) her interview with Donna Gates

at the autism convention last year which really clicked with me, went

onto her website, ordered her book and made an appointment with her

and because of her book came across pecan bread and you guys. I

haven't actually implemented the SCD diet yet as I was asked not to

change anything in Jay's diet until I see her in June. This has been

so hard to do,knowing that you can help your child further and not

doing it . but I realise that to keep the picture clear that it is

the best thing to do. However I am sure and hopeful that in a month I

will be able to start on the intro diet minus dairy and although

nervous feel extremely positive about it. Diet seems so obviously the

place to start, you can feel the good and harm food is doing to your

child can't you! I've been practicing the baking without flour,

managed some pretty decent muffins and I'm hoping that if I can

manage to bake in bulk a few times a week it will be fine, although I

can't say I'm not worried about the first week!! I'm vegetarian, so

all the meat broths is a bit like yeuch! but Jay loves meat . God

knows how I'm going to get the vegetables down him though, on a good

day he will eat chicken soup but as of yet only as long as there is

potato in it!! I reckon all your advice with how to sneak the

veggies in is going to much appreciated!!!!!! Anyway, I've gone on

way too long, TIA for all your tips and support, I hope that I too

can be of some use to you in the future, it's wonderful what you're

all doing for yourselves and your children, much love to you and

yours, Josie

ps I had a really bum day today, Jay was particularly " spacey " and

his problems were so intensely in my face in a room full of normal 3

year olds at preschool, I was at the edge of tears all day, reading

all your messages made me feel so less alone, thank you so much for

that xxxxxxxxxxxxxxxxxxx

Kai (NT ) and Jay (ASD and about to start SCD, though he doesn't know

it yet!!)

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

Dear Josie,

I know what it is like to be in a room full of " normal " kids and

your child is throwing a rage attack and flipping around on the

floor like a dieing fish! I have cried too when I couldn't figure

out why my kids where so different.

We also wasted much time with our son who is going to be five. I

didn't know better. I had been convinced by people who thought they

had it all figured out. We did not know SCD and also experimented

fruitlessly with practicaly every way of eating for 1 and a half

years....the GFCFSF diet, even others...and even the paleo...that

did not work.

I hope and pray that he doesn't have permanent problems, or my

daughter for that matter (but she is younger so I pray she will be

OK in time). But you know even if they don't it doesn't matter...we

love them. Since my daughter at 23 months old was diagnosed with

Autism....at first this label nocked me out of balance. But you

know she is the same KiKi before this label. She is my daugher and

I love her too.

I am beginning to see the light at the end of the tunnel. It isn't

so bad after all. Labels are just labels. It is those others who

don't realize the special gifts these kids truly have.

I threw out hundreds of dolars of gluten free grains, sugar, gaur

gum xanthum gum and countless prescriptions and supplements that

where not SCD legal. At one time I falsely believed that gluten was

contaminating everything. Because the GFCFSF diet did not

work...and since we have Celiac Disease the Celiac Spue ASsociation

had convinced us that it was all about gluten...I believed

them...and couldn't imagine why my daughter was slipping from

us...in every wasy.

To make a long story short....at least both of us are on the right

path now. WE will love our kids no matter what...different, special

and all! Wiht SCD at least they have a shot at being healthy.

Isn't it nice to know that you are on the right road, Hang in there

the first weeks are not easy. Stick close to the serve, we will

give you much support.

Antoinette

Mother of 4+ celiac/ASD/ADHD, KiKI 2 celiac/autistic and our

18 month old Bubbles who is now healing out of Hyperekplexia

(supposidly a life long problem..the doctors are baffled!)/2+ months

SCDiet entire family of five now healing...my husband and I both

have celiac disease)

> Hi, I wanted to introduce myself as I've been reading with

interest

> all the posts here for almost a week now My name is Josie and I

live

> with my partner and my 2 sons Kai (5 N.T ) and Jay ( asd

3 ).

> We live in notinghamshire in U.K. Jay was diagnosed with autism

in

> January this year, we found out after frantic research on the

> internet about the gfcf diet and at the same time tried to find a

> good homeopath experienced with treating autism. The diet was

> implemented in February but immediately despite improvements

inJay

> with eye contact etc and recovering the few words he had lost the

use

> of , it felt wrong, really wrong to be using all the gfcf flours

and

> processed substitutes. I still have a jar of gfcf cheese sauce

that I

> couldn't bear to open! Before jay was diagnosed we had as a family

a

> really " healthy " diet or so I thought! We bought our food all

> organic and fresh, milled our own organic spelt flour to make our

> bread, limited dairy intake etc but that all changed after the

> diagnosis. So, I remembered a book that a friends of ours had in

> Greece ( we lived there for over 15 years ) called nourishing

> traditions and got a copy for myself, initially I was hoping that

I

> could still make my own flour etc and that by soaking the grains

I

> would be able to avoid all the gfcf flour but it seems at least

for

> now that isn't possible. Then I came across Dr. Natasha Cambell

> McBride and heard ( via the internet) her interview with Donna

Gates

> at the autism convention last year which really clicked with me,

went

> onto her website, ordered her book and made an appointment with

her

> and because of her book came across pecan bread and you guys. I

> haven't actually implemented the SCD diet yet as I was asked not

to

> change anything in Jay's diet until I see her in June. This has

been

> so hard to do,knowing that you can help your child further and

not

> doing it . but I realise that to keep the picture clear that it

is

> the best thing to do. However I am sure and hopeful that in a

month I

> will be able to start on the intro diet minus dairy and although

> nervous feel extremely positive about it. Diet seems so obviously

the

> place to start, you can feel the good and harm food is doing to

your

> child can't you! I've been practicing the baking without flour,

> managed some pretty decent muffins and I'm hoping that if I can

> manage to bake in bulk a few times a week it will be fine,

although I

> can't say I'm not worried about the first week!! I'm vegetarian,

so

> all the meat broths is a bit like yeuch! but Jay loves meat . God

> knows how I'm going to get the vegetables down him though, on a

good

> day he will eat chicken soup but as of yet only as long as there

is

> potato in it!! I reckon all your advice with how to sneak the

> veggies in is going to much appreciated!!!!!! Anyway, I've gone

on

> way too long, TIA for all your tips and support, I hope that I

too

> can be of some use to you in the future, it's wonderful what

you're

> all doing for yourselves and your children, much love to you and

> yours, Josie

>

> ps I had a really bum day today, Jay was particularly " spacey "

and

> his problems were so intensely in my face in a room full of normal

3

> year olds at preschool, I was at the edge of tears all day,

reading

> all your messages made me feel so less alone, thank you so much

for

> that xxxxxxxxxxxxxxxxxxx

>

> Kai (NT ) and Jay (ASD and about to start SCD, though he doesn't

know

> it yet!!)

>

>

>

>

>

> For information on the Specific Carbohydrate Diet, please read the

book _Breaking the Vicious Cycle_ by Elaine Gottschall and read the

following websites:

> http://www.breakingtheviciouscycle.info

> and

> http://www.pecanbread.com

>

>

>

>

>