In fact, it was Mitochondrial Disease

[Guest guest]

Hello, we are new. For many years members (mostly female) of my family have

dealt with issues like CFS and/or Fibromyalgia. A year and a half ago, however,

we were floored by our baby daughter's seemingly similar symptoms (in fact, the

physicians were not sure she would live). Thus began the long, lonely walk down

the Mitochondrial Diseases lane, where we met many, many, many families who had

at first been diagnosed with CFS or FBM or -- what my doctor kept telling me --

BAM (Being a Mother), and in fact had Mito in the family. Like CFS or FBM, we

do not have a cure for Mitochondrial Disease ( " Mito " ); we treat the symptoms. I

would like to know if any of you have been down the Mito lane? We use Flax Seed

Oil, multivitamins and Co-Enzyme Q10 supplements. We are not sure yet if it has

any effect. Our daughter has had transient episodes of lactic acidosis, which

fatigues her.

FYI, some of you may remember hearing about 11 year old Mattie Stepanek, who has

a form of MD, Mitochondrial Myopathy, and has written NY Times bestseller " Hope

Through Heartsongs " . He has appeared most recently on Oprah, Larry King Live and

CNN.

I would like to welcome opening any discussion concerning mitochondrial

dysfunction, in adults or children. For more information about " Mito " ,

www.umdf.org, www.mitoresearch.org, www.nih.gov/sigs/mito, www.mdausa.org,

www.mitosoc.org. We would like to get to the bottom of this! Nice to meet a

group who may have some dealings with Mito and CFS/FBM. Below is some info I

thought may be helpful to you all, your friends, and your doctors. I hope to

get some feedback -- thanks so much, .

Mito Facts…

Of the 4 million children born each year in the U.S., 4000+ develop

mitochondrial diseases.

In the United States, more than 50 million adults suffer from diseases in

which mitochondrial dysfunction is involved. Mitochondrial dysfunction is found

in diseases as diverse as cancer, infertility, autism, epilepsy, diabetes, heart

diseases, blindness, deafness, kidney disease, liver disease, stroke, migraine,

SIDS, and the toxicity of HIV and other drugs. Mitochondrial dysfunction is also

involved in aging and neurodegenerative diseases such as Parkinson and Alzheimer

dementia.

Mitochondrial diseases can affect any organ in the body and at any age.

Mitochondrial diseases are severely debilitating, often fatal and

characteristically complex in nature. Some, however, present only mildly. They

are inherited through the mother, but can at times be inherited from either

parent. They can also be sporadic or induced by the environment.

Many mitochondrial diseases are so new that they have not yet been mentioned

in medical textbooks.

To date, there is no cure for mitochondrial diseases…

FOR MORE INFORMATION ON THE

5th INTERNATIONAL UMDF SYMPOSIUM ON MITOCHONDRIAL DISEASES (June 6-9, 2002)

OR

ON MITO GENERALLY, you can CONTACT :

The Mitochondrial Research Society www.mitoresearch.org

The United Mitochondrial Disease Foundation www.umdf.org

The Muscular Dystrophy Association www.mdausa.org (look under Mitochondrial

Myopathies)

The Mitochondrial Medicine Society www.mitosoc.org

The Mitochondrial Interest Group, National Institutes of Health

www.nih.gov/sigs/mito

---------------------------------

[Guest guest]

How do the doctors rule out tissue hypoxia in making a diagnosis of

mito disease? Without oxygen mito function will fail, but that is

not because there is any damage to the mitochondria. So, I'm

guessing that they must have somehow ruled out hypoxia as a possible

contributing factor.

It is also possible that mito disease first started with hypoxia and

then as the cells became acidic the mito was damaged and then under

inspection seeing the damaged mito the conclusion is drawn that the

problem was caused by mito damage when in fact the real culprit was

hypoxia.

A question on your child was s/he breastfed as an infant? Do you

know of any research done to correlate breastfed infants and mito

disease?

The information I have on FMS and breastfeeding is too small yet to

draw any conclusions but a couple ladies that have been dealing with

FMS since early childhood knew for certain that they were not given

mother's milk as a baby.

The mothers milk is key to establishing a healthy intestinal flora

and immune protection until babies own immune system is developed.

Formulas do not provide these important benefits.

Just wondering.

All the best,

Jim

Fibromyalgia: A Hypothesis of Etiology

http://www.xmission.com/~total/temple/index.html

>

> Hello, we are new. For many years members (mostly female) of my

family have dealt with issues like CFS and/or Fibromyalgia. A year

and a half ago, however, we were floored by our baby daughter's

seemingly similar symptoms (in fact, the physicians were not sure

she would live). Thus began the long, lonely walk down the

Mitochondrial Diseases lane, where we met many, many, many families

who had at first been diagnosed with CFS or FBM or -- what my doctor

kept telling me -- BAM (Being a Mother), and in fact had Mito in the

family. Like CFS or FBM, we do not have a cure for Mitochondrial

Disease ( " Mito " ); we treat the symptoms. I would like to know if

any of you have been down the Mito lane? We use Flax Seed Oil,

multivitamins and Co-Enzyme Q10 supplements. We are not sure yet if

it has any effect. Our daughter has had transient episodes of

lactic acidosis, which fatigues her.

>

> FYI, some of you may remember hearing about 11 year old Mattie

Stepanek, who has a form of MD, Mitochondrial Myopathy, and has

written NY Times bestseller " Hope Through Heartsongs " . He has

appeared most recently on Oprah, Larry King Live and CNN.

>

> I would like to welcome opening any discussion concerning

mitochondrial dysfunction, in adults or children. For more

information about " Mito " , www.umdf.org, www.mitoresearch.org,

www.nih.gov/sigs/mito, www.mdausa.org, www.mitosoc.org. We would

like to get to the bottom of this! Nice to meet a group who may

have some dealings with Mito and CFS/FBM. Below is some info I

thought may be helpful to you all, your friends, and your doctors.

I hope to get some feedback -- thanks so much, .

>

> Mito Facts…

>

> Of the 4 million children born each year in the U.S., 4000+

develop mitochondrial diseases.

> In the United States, more than 50 million adults suffer from

diseases in which mitochondrial dysfunction is involved.

Mitochondrial dysfunction is found in diseases as diverse as cancer,

infertility, autism, epilepsy, diabetes, heart diseases, blindness,

deafness, kidney disease, liver disease, stroke, migraine, SIDS, and

the toxicity of HIV and other drugs. Mitochondrial dysfunction is

also involved in aging and neurodegenerative diseases such as

Parkinson and Alzheimer dementia.

> Mitochondrial diseases can affect any organ in the body and at

any age.

> Mitochondrial diseases are severely debilitating, often fatal

and characteristically complex in nature. Some, however, present

only mildly. They are inherited through the mother, but can at times

be inherited from either parent. They can also be sporadic or

induced by the environment.

> Many mitochondrial diseases are so new that they have not yet

been mentioned in medical textbooks.

> To date, there is no cure for mitochondrial diseases…

>

> FOR MORE INFORMATION ON THE

>

> 5th INTERNATIONAL UMDF SYMPOSIUM ON MITOCHONDRIAL DISEASES (June

6-9, 2002)

>

> OR

>

> ON MITO GENERALLY, you can CONTACT :

>

> The Mitochondrial Research Society www.mitoresearch.org

>

> The United Mitochondrial Disease Foundation www.umdf.org

>

> The Muscular Dystrophy Association www.mdausa.org (look under

Mitochondrial Myopathies)

>

> The Mitochondrial Medicine Society www.mitosoc.org

>

> The Mitochondrial Interest Group, National Institutes of Health

www.nih.gov/sigs/mito

>

>

>

>

>

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

>

[Guest guest]

,

For what it's worth, this is what I think the connection is between

mitochondrial disease and CFS:

In mitochondrial diseases, one or more of the enzymes involved in the

intermediary metabolism in the mitochondria (in the Krebs cycle or the

respiratory chain) is defective because of a genetic mutation. This

produces a lowering in the rate of production of ATP as well as

several other effects.

In CFS, I believe there are partial blockades in the intermediary

metabolism in the mitochondria, again either in the Krebs cycle or the

respiratory chain. Although the enzymes are not defective, they are

inhibited, and the effects are largely the same in terms of lower ATP

production in the cells involved. This inhibition can be caused by a

number of things, as manifested in the different subsets of CFS. I

think that the main subset has a partial blockade at aconitase in the

Krebs cycle due to the buildup in concentration of peroxynitrite, an

oxidizing free radical, which is known to attack aconitase.

Peroxynitrite is known to rise in concentration when the chemically

reduced form of glutathione is depleted. This seems to be brought

about by some combination of stressors, perhaps a diet low in

sulfur-containing amino acids, and perhaps a genetic predisposition.

This last point could be another factor joining mitochondrial disease

with CFS in some PWCs, but I don't think that the genetic factor is

the primary cause of CFS, as it is in mitochondrial diseases.

Rich

>

> Hello, we are new. For many years members (mostly female) of my

family have dealt with issues like CFS and/or Fibromyalgia. A year

and a half ago, however, we were floored by our baby daughter's

seemingly similar symptoms (in fact, the physicians were not sure she

would live). Thus began the long, lonely walk down the Mitochondrial

Diseases lane, where we met many, many, many families who had at first

been diagnosed with CFS or FBM or -- what my doctor kept telling me --

BAM (Being a Mother), and in fact had Mito in the family. Like CFS or

FBM, we do not have a cure for Mitochondrial Disease ( " Mito " ); we

treat the symptoms. I would like to know if any of you have been down

the Mito lane? We use Flax Seed Oil, multivitamins and Co-Enzyme Q10

supplements. We are not sure yet if it has any effect. Our daughter

has had transient episodes of lactic acidosis, which fatigues her.

>

> FYI, some of you may remember hearing about 11 year old Mattie

Stepanek, who has a form of MD, Mitochondrial Myopathy, and has

written NY Times bestseller " Hope Through Heartsongs " . He has appeared

most recently on Oprah, Larry King Live and CNN.

>

> I would like to welcome opening any discussion concerning

mitochondrial dysfunction, in adults or children. For more information

about " Mito " , www.umdf.org, www.mitoresearch.org,

www.nih.gov/sigs/mito, www.mdausa.org, www.mitosoc.org. We would like

to get to the bottom of this! Nice to meet a group who may have some

dealings with Mito and CFS/FBM. Below is some info I thought may be

helpful to you all, your friends, and your doctors. I hope to get

some feedback -- thanks so much, .

>

> Mito Facts…

>

> Of the 4 million children born each year in the U.S., 4000+

develop mitochondrial diseases.

> In the United States, more than 50 million adults suffer from

diseases in which mitochondrial dysfunction is involved. Mitochondrial

dysfunction is found in diseases as diverse as cancer, infertility,

autism, epilepsy, diabetes, heart diseases, blindness, deafness,

kidney disease, liver disease, stroke, migraine, SIDS, and the

toxicity of HIV and other drugs. Mitochondrial dysfunction is also

involved in aging and neurodegenerative diseases such as Parkinson and

Alzheimer dementia.

> Mitochondrial diseases can affect any organ in the body and at

any age.

> Mitochondrial diseases are severely debilitating, often fatal and

characteristically complex in nature. Some, however, present only

mildly. They are inherited through the mother, but can at times be

inherited from either parent. They can also be sporadic or induced by

the environment.

> Many mitochondrial diseases are so new that they have not yet

been mentioned in medical textbooks.

> To date, there is no cure for mitochondrial diseases…

>

> FOR MORE INFORMATION ON THE

>

> 5th INTERNATIONAL UMDF SYMPOSIUM ON MITOCHONDRIAL DISEASES (June

6-9, 2002)

>

> OR

>

> ON MITO GENERALLY, you can CONTACT :

>

> The Mitochondrial Research Society www.mitoresearch.org

>

> The United Mitochondrial Disease Foundation www.umdf.org

>

> The Muscular Dystrophy Association www.mdausa.org (look under

Mitochondrial Myopathies)

>

> The Mitochondrial Medicine Society www.mitosoc.org

>

> The Mitochondrial Interest Group, National Institutes of Health

www.nih.gov/sigs/mito

>

>

>

>

>

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

>

[Guest guest]

Hi Rich;

What would a diet low in sulfur-containing amino acids consist of?

Fran

rvankon <vankonynenburg1@...> wrote: ,

For what it's worth, this is what I think the connection is between

mitochondrial disease and CFS:

In mitochondrial diseases, one or more of the enzymes involved in the

intermediary metabolism in the mitochondria (in the Krebs cycle or the

respiratory chain) is defective because of a genetic mutation. This

produces a lowering in the rate of production of ATP as well as

several other effects.

In CFS, I believe there are partial blockades in the intermediary

metabolism in the mitochondria, again either in the Krebs cycle or the

respiratory chain. Although the enzymes are not defective, they are

inhibited, and the effects are largely the same in terms of lower ATP

production in the cells involved. This inhibition can be caused by a

number of things, as manifested in the different subsets of CFS. I

think that the main subset has a partial blockade at aconitase in the

Krebs cycle due to the buildup in concentration of peroxynitrite, an

oxidizing free radical, which is known to attack aconitase.

Peroxynitrite is known to rise in concentration when the chemically

reduced form of glutathione is depleted. This seems to be brought

about by some combination of stressors, perhaps a diet low in

sulfur-containing amino acids, and perhaps a genetic predisposition.

This last point could be another factor joining mitochondrial disease

with CFS in some PWCs, but I don't think that the genetic factor is

the primary cause of CFS, as it is in mitochondrial diseases.

Rich

>

> Hello, we are new. For many years members (mostly female) of my

family have dealt with issues like CFS and/or Fibromyalgia. A year

and a half ago, however, we were floored by our baby daughter's

seemingly similar symptoms (in fact, the physicians were not sure she

would live). Thus began the long, lonely walk down the Mitochondrial

Diseases lane, where we met many, many, many families who had at first

been diagnosed with CFS or FBM or -- what my doctor kept telling me --

BAM (Being a Mother), and in fact had Mito in the family. Like CFS or

FBM, we do not have a cure for Mitochondrial Disease ( " Mito " ); we

treat the symptoms. I would like to know if any of you have been down

the Mito lane? We use Flax Seed Oil, multivitamins and Co-Enzyme Q10

supplements. We are not sure yet if it has any effect. Our daughter

has had transient episodes of lactic acidosis, which fatigues her.

>

> FYI, some of you may remember hearing about 11 year old Mattie

Stepanek, who has a form of MD, Mitochondrial Myopathy, and has

written NY Times bestseller " Hope Through Heartsongs " . He has appeared

most recently on Oprah, Larry King Live and CNN.

>

> I would like to welcome opening any discussion concerning

mitochondrial dysfunction, in adults or children. For more information

about " Mito " , www.umdf.org, www.mitoresearch.org,

www.nih.gov/sigs/mito, www.mdausa.org, www.mitosoc.org. We would like

to get to the bottom of this! Nice to meet a group who may have some

dealings with Mito and CFS/FBM. Below is some info I thought may be

helpful to you all, your friends, and your doctors. I hope to get

some feedback -- thanks so much, .

>

> Mito Facts…

>

> Of the 4 million children born each year in the U.S., 4000+

develop mitochondrial diseases.

> In the United States, more than 50 million adults suffer from

diseases in which mitochondrial dysfunction is involved. Mitochondrial

dysfunction is found in diseases as diverse as cancer, infertility,

autism, epilepsy, diabetes, heart diseases, blindness, deafness,

kidney disease, liver disease, stroke, migraine, SIDS, and the

toxicity of HIV and other drugs. Mitochondrial dysfunction is also

involved in aging and neurodegenerative diseases such as Parkinson and

Alzheimer dementia.

> Mitochondrial diseases can affect any organ in the body and at

any age.

> Mitochondrial diseases are severely debilitating, often fatal and

characteristically complex in nature. Some, however, present only

mildly. They are inherited through the mother, but can at times be

inherited from either parent. They can also be sporadic or induced by

the environment.

> Many mitochondrial diseases are so new that they have not yet

been mentioned in medical textbooks.

> To date, there is no cure for mitochondrial diseases…

>

> FOR MORE INFORMATION ON THE

>

> 5th INTERNATIONAL UMDF SYMPOSIUM ON MITOCHONDRIAL DISEASES (June

6-9, 2002)

>

> OR

>

> ON MITO GENERALLY, you can CONTACT :

>

> The Mitochondrial Research Society www.mitoresearch.org

>

> The United Mitochondrial Disease Foundation www.umdf.org

>

> The Muscular Dystrophy Association www.mdausa.org (look under

Mitochondrial Myopathies)

>

> The Mitochondrial Medicine Society www.mitosoc.org

>

> The Mitochondrial Interest Group, National Institutes of Health

www.nih.gov/sigs/mito

>

>

>

>

>

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

>

[Guest guest]

Hi, Fran.

That would be a diet low in protein, and especially one low in

animal-based protein, such as milk products, eggs and meat.

Rich

>

> Hi Rich;

> What would a diet low in sulfur-containing amino acids consist of?

> Fran

----------------------------------------------------------

[Guest guest]

Re: In fact, it was Mitochondrial Disease

>The information I have on FMS and breastfeeding is too small yet to

draw any conclusions but a couple ladies that have been dealing with

FMS since early childhood knew for certain that they were not given

mother's milk as a baby.

The mothers milk is key to establishing a healthy intestinal flora

and immune protection until babies own immune system is developed.

Formulas do not provide these important benefits.

<

There is a flaw with this assumption. If a mother's immune function is

healthy then they will pass on the healthy benefits through breastfeeding.

If the mother's immune function is deficient, then they will not pass on

healthy benefits. More and more women have immune function problems and the

quality of breastmilk in general has gone down over the years. They are now

finding that breastfed babies are as likely to have problems with ear

infections. So breastfeeding may not be as protective as it once might have

been.

Swine flu is known to cause immune function problems for up to 2 years after

getting the disease. My mother came down with Swine flu 4 months before she

got pregnant with me, and was still having effects from it after I was born.

So although I was breastfed, I didn't get the healthy immune benefits that I

should have gotten.

lindaj@...

[Guest guest]

,

Your logic is correct. The point I was trying to make in the

original post is that there is a connection to FMS/CFS intestinal

flora. Being breastfed as an infant establishes a healthy growth of

the beneficial good bacteria in the gut. Later illness could

possibly upset that environment and thus lead to conditions of the

FMS/CFS in childhood.

You are right, a child could be breastfed and if the mothers

immune system is impaired the child could be receiving milk but not

all the benefits of the milk that you would expect under healthy

conditions. An infant being fed formula will receive none of these

benefits.

The logic of an impaired immune system also leads to the

possibility of FMS/CFS being the result of a virus that was then

allowed to breach the bodies immune functions. I do not think that

this is the case. I do think that bacterial overgrowth in the body

helps to pollute the system and bring about the condition.

I had posted similar information in another fibro forum and was

blasted with all kinds of negative comments. I think that many

people with this condition want it to be viral related because it

then removes any implied responsibility from them for having the

condition; It was something that they caught somewhere, somehow,

through no fault of their own.

Once FMS/CFS develops restoring intestinal flora is not acheived

by taking probiotics alone. The intestinal environment must be

restored in order for the beneficial gut bacteria to repopulate the

gut. Normal gut pH, in the colon is slightly acidic. I think that

most people with FMS/CFIDS will find colon pH to be alkaline. Until

gut pH is restored the return of beneficial gut flora is unlikely.

That is what the program I have put together attempts to achieve.

All the best,

Jim

Fibromyalgia: A Hypothesis of Etiology

http://www.xmission.com/~total/temple/index.html

>

> Re: In fact, it was Mitochondrial

Disease

> >The information I have on FMS and breastfeeding is too small yet

to

> draw any conclusions but a couple ladies that have been dealing

with

> FMS since early childhood knew for certain that they were not given

> mother's milk as a baby.

>

> The mothers milk is key to establishing a healthy intestinal flora

> and immune protection until babies own immune system is developed.

> Formulas do not provide these important benefits.

> <

>

> There is a flaw with this assumption. If a mother's immune

function is

> healthy then they will pass on the healthy benefits through

breastfeeding.

> If the mother's immune function is deficient, then they will not

pass on

> healthy benefits. More and more women have immune function

problems and the

> quality of breastmilk in general has gone down over the years.

They are now

> finding that breastfed babies are as likely to have problems with

ear

> infections. So breastfeeding may not be as protective as it once

might have

> been.

>

> Swine flu is known to cause immune function problems for up to 2

years after

> getting the disease. My mother came down with Swine flu 4 months

before she

> got pregnant with me, and was still having effects from it after I

was born.

> So although I was breastfed, I didn't get the healthy immune

benefits that I

> should have gotten.

>

>

> lindaj@h...

[Guest guest]

or someone, would you be so kind as to give me a link

to the Report 19? I must have missed it but I believe in

intestinal health being key in CFS or at least my case.

Mike

> Please see Positive Health News Report 19. The whole purpose of

this report is restoring intestinal health. It has some excellent

ideas and feedback from people who have tried the suggestions.

>

>