Mitochondrial disease

July 1, 2007

Hey kat

thanks for all the info.

You know, I have been reading Cheney on and off since early/mid 90s

and he always seemed spot on; I think I had read about the

mitochondrial aspect previously but part of my brain issue is some

disorganization and since this isn't my field of study I have even

poorer recall/frame of reference sometimes with these term---so I

forget what I know--sort of like that movie " Memento "

I have gluathione in my blood, according to genova diagnostics detox

profile my problem isnt having and activating

supplements/nutrients/meds, its utilizing and getting rid of them

(phase 1 or, phase 11 low). So just supplementing in my case isnt the

issue, I have done that and it doesnt work well with most things,

either I feel bad from aminos for example and many meds, or they do

nothing. There are a few things that I seem to tolerate (i.e.emergen-

c drink)and that must get through in a good way a little bit or I

probably wouldnt be hanging in here as moderately well as I do, but

supplementation has been a major difficulty and now I know why. It

could also explain why I could never tolerate alcohol and why now my

bone density tests are low and getting lower.

Anyway, I am definitely going to bring up mitochondrial issues to my

one open minded doc, I think she must already be aware of it as she

is utilizing genova diagnostic lab tests and amino supplementation.

I had an echo in december, it didnt show anything abnormal but it

flared me up the day after for a couple weeks. I wanted the impedance

one but they dont have it here, I guess they used to have it but got

rid of it.....? dont know why. Its a teaching reputable hospital (but

in my opinion, way behind for cfs/fms other than

recommending/research meditation which is great, but sort of takes

them off the hook for looking into other things too).

> >

> > I have been doing research trying to understand more about the

results

> > of my genova detox panel test and came across mitochondrial

diseases

> > and wondered if having problems with one's phase 11 of detox

could

> > indicate mitochondrial disease.

> > Reading about mitochondrial related problems it seems to me that

half

> > the people who have fms/cfs could just have undiagonsed

mitochondrial

> > disorders, seems like something physicians may not look into

because

> > can be invasive testing and may be trained to only think of it in

> > extreme cases like with deafness etc.

> > any knowledge on this ?

> >

>

July 1, 2007

You're welcome, and I sure do know the Memento thing...this is a constant with

me...I got a kick out of that movie!

The malabsorbtion and detox problems are common in us...some to the extreme you

describe...cannot really tolerate or benefit from anything.

That's why we/our doctors are always looking for better delivery methods, and

improve the pathways, and gentle detox. ALso why tests aren't always

telling...the x, y, or z may be *there* but not going/doing what it's supposed

to.

When I can, I look for liquid forms, or powders to put in a smoothie. And food

or plant-based, and purest forms. Wish I could do everything liquid, straight

from the bottle, cause I get pill aversion too.

I like emergen-c too. Have you tried Gookinaid/Hydrolyte? It's great for me, for

heart " pre-load " , for heat, BP, brain, and I think it may help absorbtion?

So, they got rid of the Impedance Machine??? Idiots. They may never have learned

how to use it. It's only been taught in Med School for a few years. DD for about

10 years.

Ah, yes, meditation. It does help me, but they pronounce CFS as Psych and

Mind/Body, with endless funded studies, while turning down all biomedical work.

(To be *cured* with CBT...very cheap.).

We need to know that our doctors are *being told* repeatedly that studies prove

CBT, or related, to have the best results. One study after another in every way

shape and form.

So handy, don't do real study so ----> No proven treatment----> so, no coverage

approved for " anything " .

Their studies will get more and more diverse *sounding* and detailed, indicating

they are really taking this seriously.

Big CDC PR coming on this. But coincidentally, all roads lead back to

somatising, CBT, etc.

To paraphrase an ME satire from Magnus, UK, they seem more like multi million

dollar exercises in Voyeurism.

TC,

Katrina

> > >

> > > I have been doing research trying to understand more about the

> results

> > > of my genova detox panel test and came across mitochondrial

> diseases

> > > and wondered if having problems with one's phase 11 of detox

> could

> > > indicate mitochondrial disease.

> > > Reading about mitochondrial related problems it seems to me that

> half

> > > the people who have fms/cfs could just have undiagonsed

> mitochondrial

> > > disorders, seems like something physicians may not look into

> because

> > > can be invasive testing and may be trained to only think of it in

> > > extreme cases like with deafness etc.

> > > any knowledge on this ?

> > >

> >

>

July 4, 2007

Hi Rich,

Do you know anything about the genes relating to mito function that Dr

Kerr etc find up/down regulated ? And what might up or down regulate

them? Could there be SNPs involved here too as well as in the

methylation/folate cycle?

Wishing you all the best to get your paper published as soon as poss.

Hope the medical establishment don't make it difficult for you.

Have you discussed the mito evidence and your theory with mito

researchers? Could that be a way to get more acceptance and validity

for all this?

With best wishes,

Sheila

>

> Hi, idarchetype2000.

>

> Dr. Myhill and I have just finished writing a paper on mitochondrial

> dysfunction in CFS, and are in the process of trying to get it

> published in a journal. While we can't totally rule out inherited

> genetic issues involving either the mitochondrial genome or the parts

> of the cell's nuclear genome that code for most of the proteins in

the

> mitochondria, it appears that in most cases of CFS we are dealing

with

> mitochondrial dysfunction as a secondary effect, rather than a

primary

> mitochondrial disease.

>

July 21, 2010

Have the children who have been treated for also been tested for

mitochondrial disease? If so, how have they done? If not, is this ruled out

before starting the protocol? My son has had 2 elevated lactic acid

tests and the doctors here have said they did not want to go any further

with testing because it is invasive (muscle biopsy).

July 26, 2010

There are several test that need to be done ro rule this out. Not necessarily a

muscle biopsy. Besides those 2 test, what else makes you think mito???

Ufortunately lactic acid is so prone to lab error. However, I would not just

discount it either.

, " and Freeman " <freemanbk@...> wrote:

>

> Have the children who have been treated for also been tested for

> mitochondrial disease? If so, how have they done? If not, is this ruled out

> before starting the protocol? My son has had 2 elevated lactic acid

> tests and the doctors here have said they did not want to go any further

> with testing because it is invasive (muscle biopsy).

>

July 26, 2010

There are several doctors who see Mito dysfunction (not genetic) to be cause for

Autism - here is some info that had come up in another newsgroup

There are several doctors, Mito specialists, who do look at Mitochondria as a

possible cause for Autism.

Not necessarily a genetic disorder but induced. Some hypothesize that it could

be a immune response that is causing the Mito dysfunction.Mitoaction.org has lot

of information on this

http://www.mitoaction.org/autism

Couple of doctors (there are several and I think the Mitoaction.org tracks them)

are

http://neurosciences.ucsd.edu/biosx.php?pageid=RHaas

http://biochemgen.ucsd.edu/mmdc/

And also Cleveland Clinic is way ahead on this

http://my.clevelandclinic.org/multimedia/transcripts/parikh_understanding_mitoch\

ondrial_disorders.aspx

________________________________

From: nm042 <sd042@...>

Sent: Mon, July 26, 2010 8:05:41 PM

Subject: Re: Mitochondrial disease

There are several test that need to be done ro rule this out. Not necessarily a

muscle biopsy. Besides those 2 test, what else makes you think mito???

Ufortunately lactic acid is so prone to lab error. However, I would not just

discount it either.

, " and Freeman " <freemanbk@...> wrote:

>

> Have the children who have been treated for also been tested for

> mitochondrial disease? If so, how have they done? If not, is this ruled out

> before starting the protocol? My son has had 2 elevated lactic acid

> tests and the doctors here have said they did not want to go any further

> with testing because it is invasive (muscle biopsy).

>

July 27, 2010

,

Several years ago (during the time when Hannah Poling was in the news), we

discussed the idea a mitochondrial disease with my son¹s neurogeneticist .

There were tests that involved sending blood of to Texas (I think to

Baylor). There was also the mention of a muscle biopsy.

We talked to Dr. G about it and he said ³OF COURSE their mitochondria are

going to be off!². I can¹t really remember what all he said, but the end

conclusion was that continuing our course of treatment was the best plan.

We didn¹t run the tests and we didn¹t try any of the supplements. Our son

had already been on one (per a neurologist) when his seizures had first

started with no benefit (Carnitine).

My son¹s neurogeneticist was perfectly happy with what we decided and has

never brought it up again.

Then again, that neurogeneticist is known for his ³sixth sense² with

children. Other doctors go on and on about how brilliant he is. Another

neurologist referred us to him when he could not get my son¹s seizures

stopped (He said ³You need someone smarter than I am.²). So maybe his sixth

sense was telling him that the mito issue was not going to be the big one

with my son.

HTH,

Caroline G.

July 27, 2010

Thanks Caroline.

Did your child take any supplements (as per Dr. G) that helped him? How is

he now?

From: [mailto: ] On Behalf Of

Caroline Glover

Sent: July-27-10 9:26 AM

Subject: Re: Mitochondrial disease

,

Several years ago (during the time when Hannah Poling was in the news), we

discussed the idea a mitochondrial disease with my son¹s neurogeneticist .

There were tests that involved sending blood of to Texas (I think to

Baylor). There was also the mention of a muscle biopsy.

We talked to Dr. G about it and he said ³OF COURSE their mitochondria are

going to be off!². I can¹t really remember what all he said, but the end

conclusion was that continuing our course of treatment was the best plan.

We didn¹t run the tests and we didn¹t try any of the supplements. Our son

had already been on one (per a neurologist) when his seizures had first

started with no benefit (Carnitine).

My son¹s neurogeneticist was perfectly happy with what we decided and has

never brought it up again.

Then again, that neurogeneticist is known for his ³sixth sense² with

children. Other doctors go on and on about how brilliant he is. Another

neurologist referred us to him when he could not get my son¹s seizures

stopped (He said ³You need someone smarter than I am.²). So maybe his sixth

sense was telling him that the mito issue was not going to be the big one

with my son.

HTH,

Caroline G.

July 29, 2010

Instead of the cause of autism it is more logical that transient mitochondrial

problems are a result of a long term pathological condition.

on RN, MSN

NNY Autism Clinic

Re: Mitochondrial disease

There are several test that need to be done ro rule this out. Not necessarily a

muscle biopsy. Besides those 2 test, what else makes you think mito???

Ufortunately lactic acid is so prone to lab error. However, I would not just

discount it either.

, " and Freeman " <freemanbk@...> wrote:

>

> Have the children who have been treated for also been tested for

> mitochondrial disease? If so, how have they done? If not, is this ruled out

> before starting the protocol? My son has had 2 elevated lactic acid

> tests and the doctors here have said they did not want to go any further

> with testing because it is invasive (muscle biopsy).

>

July 29, 2010

Yes, that is a better characterization.

Thanks for the correction.

________________________________

From: " JOSKAT95@... " <JOSKAT95@...>

Sent: Thu, July 29, 2010 3:28:54 PM

Subject: Re: Re: Mitochondrial disease

Instead of the cause of autism it is more logical that transient mitochondrial

problems are a result of a long term pathological condition.

on RN, MSN

NNY Autism Clinic

Re: Mitochondrial disease

There are several test that need to be done ro rule this out. Not necessarily a

muscle biopsy. Besides those 2 test, what else makes you think mito???

Ufortunately lactic acid is so prone to lab error. However, I would not just

discount it either.

, " and Freeman " <freemanbk@...> wrote:

>

> Have the children who have been treated for also been tested for

> mitochondrial disease? If so, how have they done? If not, is this ruled out

> before starting the protocol? My son has had 2 elevated lactic acid

> tests and the doctors here have said they did not want to go any further

> with testing because it is invasive (muscle biopsy).

>

July 30, 2010

My understanding according to CDC who conceded HANNAH POLING's VACCINE INJURY

was due to vaccines " aggravated an underlying mitochondrial disorder "

" On March 6, 2008, the major news networks reported on a National Vaccine Injury

Compensation Program case in which liability was conceded based on circumstances

surrounding Dr. and Mrs. Poling's 9-year-old daughter's autism. Medical

personnel at the Division of Vaccine Injury Compensation, Department of Health

and Human Services concluded that the facts of this case met the statutory

criteria for demonstrating that the vaccinations Hannah Poling received on July

19, 2000, significantly aggravated an underlying mitochondrial disorder, which

predisposed her to deficits in cellular energy metabolism, and manifested as a

regressive encephalopathy with features of autism spectrum disorder. "

So from their perspective, the Mito disorder was first.

For instance, kids with LYME DISEASE have a mito disorder. Just being sick

causes a mito disorder which is why sick kids are not supposed to be vaccinated.

Adding TYLENOL to the mix of mito disorder and vaccine ratchets up stress on

mito which often cannot handle the additional burdens.

Shooting TOXIC WASTE (vaccines)into our bloodstreams I believe causes mito

disorder also. It certainly can't be good for us in any amount.

> >

> > Have the children who have been treated for also been tested for

> > mitochondrial disease? If so, how have they done? If not, is this ruled out

> > before starting the protocol? My son has had 2 elevated lactic acid

> > tests and the doctors here have said they did not want to go any further

> > with testing because it is invasive (muscle biopsy).

> >

August 25, 2010

Legal cases are not exactly a source of good science.Metabolic disorders that a

child is born with are diagnosed in infancy or shortly thereafter. The metabolic

disorder associated with autism is more likely to be a transient metabolic

disorder that occurs as a result of abnormal biochemistry.