Re: A PWC with a CBS (C699T) (+/+) SNP, as predicted

[Guest guest]

Hi Rich,

Thank you, and to Cheri and Kathy, for this report.

I have 3 questions:

1)

>>>>I can say that the

symptoms she has reported experiencing are consistent with what Dr.

Yasko has found in autistic children with CBS SNPs<<<<

What symptoms, exactly?

2)

About FolaPro...it's also something Dr. Cheney put some patients on, including

me.

I did not do much research on it tho...so could you remind me, exactly what

symptoms it is targeting? (And underlying reason) What are the responses being

reported in children with Autism?

3)

I have not completely followed all of the research on Autism and CFS all the

years or lately. But what I see and hear is always about children with Autism.

Who, of course grow and become adults. With this work going on for so many years

now, are Adults with Autism being studied?

THis question pertains both to those in these {CFS parallels) groups who *were*

being studied as children...what is being found and how/what are they doing?

and also to Adults coming into studies as Adults.

In other words, similarities between CFS and Adult with Autism. Re: symptoms,

blood work, functioning, and treatments.

Parallels with CFS, etc.

4)

When you, Amy, or others compare CFS and Autism, which CFS model are you using?

As in ME/CFS...CCDef., Fukuda, " CFS-like " , viral onset, neurological, severe,

bedridden, ambulatory, etc.

Are the Autistic children at all levels of functioning?

Hope this makes sense,

Thank you!

Katrina

>

> Hi, all.

>

> As most of you are aware, during the past few months I have been

> promoting the hypothesis that the genetics and biochemistry that

> underly many cases of CFS are very similar to those involved in many

> cases of autism. I have suggested that there is a vicious circle

> CFS that involves glutathione depletion and a block in the

> methylation cycle, as was found by S. Jill et al. in autism,

> and as emphasized by both the Defeat Autism Now! organization and

> separately by Dr. Amy Yasko in her autism cases. I have encouraged

> PWCs who test low in glutathione to have the genetic variations

> panel run that is offered by Dr. Yasko at

> http://www.testing4health.com. Several of you have gone ahead and

> ordered this panel, Sue T. being the first to do so.

>

> Many of you will recall that some months ago I predicted that a

> woman named Cheri (who has given me permission to discuss her case

> on the list) who is not currently on this list, but whose mother

> (Kathy) is on the list (who has also given me permission to discuss

> her case), would turn out to have a homozygous (+/+) gene variation

> or SNP in her cystathionine beta synthase (CBS) enzyme, the so-

> called CBS (C699T) SNP. I also predicted that Kathy would

> necessarily be heterozygous in this same SNP, since Cheri received

> half her genes from Kathy. I made this prediction on the basis of

> Cheri's urinary cystathionine level, which was about 15 times the

> mean normal value, and also on her history and the seriousness of

> her illness. As you may know, Dr. Yasko has reported that the most

> seriously ill of the autistic children have the CBS SNP. Cheri has

> one of the most serious cases of CFS that I have encountered.

>

> Cheri has now received the results of her genetic variations test,

> and has shared them with me. As I predicted, she is homozygous for

> the CBS C699T SNP. Not only that, but she is also heterozygous for

> three other SNPs that interact to impact her methylation cycle,

> namely MTHFR C677T, MTR A2756G, and MTRR A66G.

>

> I have shared with her that I believe she would benefit from

> trimethylglycine, methyl B-12, folinic acid, and FolaPro. I am in

> the process of working out an order and dosing schedule for these

> supplements.

>

> Cheri also has some other SNPs, but I think these are the most

> significant ones.

>

> Kathy's genetic variations test results have not come back yet, but

> it is a foregone conclusion that she is at least heterozygous for

> the CBS SNP. I think that the fact that her illness is not as

> serious as Cheri's, nor is her urinary cystathionine as high, would

> argue that she is probably not homozygous for this SNP.

>

> I'm posting this information here for the benefit of others who may

> be trying to decide whether it would be worthwhile to have the Yasko

> panel run, since it is pretty expensive. Cheri was able to get the

> smaller 10-SNP panel, because it was still being offered when she

> applied. Currently the larger 40-SNP panel is the only one offered,

> but Dr. Yasko has begun to interpret the significance of some of

> these other SNPs in autistic children, so I expect that they will be

> relevant in some CFS cases as well. Based on what I have seen so

> far, I continue to believe that this parallel between CFS and autism

> is real in many cases, and that this genetic testing will pay off

> for many PWCs.

>

> Of course, we have yet to see whether the targeted supplements will

> bring about improvement in Cheri's case, but I can say that the

> symptoms she has reported experiencing are consistent with what Dr.

> Yasko has found in autistic children with CBS SNPs, and the genetic

> results are consistent with her urinary amino acid test results, so

> I believe we are finally on the right track in her case.

>

> Rich

>

[Guest guest]

Hi Katrina,

If I may comment . . . Dr. Amy is releasing a new book in a couple of months

describing her take on CFS and the relationship to Autism. I believe she feels

that many illnesses are due to the Methylation variations and the Autistic

children are at the extreme end of one range of getting hit the hardest. It is

all related.

I can't wait to read the book. I

It should be available on websites soon: www.holisticheal.com and

www.testing4health.com.

Best wishes,

Sue T

kattemayo <kattemayo@...> wrote:

Hi Rich,

Thank you, and to Cheri and Kathy, for this report.

I have 3 questions:

1)

>>>>I can say that the

symptoms she has reported experiencing are consistent with what Dr.

Yasko has found in autistic children with CBS SNPs<<<<

What symptoms, exactly?

2)

About FolaPro...it's also something Dr. Cheney put some patients on, including

me.

I did not do much research on it tho...so could you remind me, exactly what

symptoms it is targeting? (And underlying reason) What are the responses being

reported in children with Autism?

3)

I have not completely followed all of the research on Autism and CFS all the

years or lately. But what I see and hear is always about children with Autism.

Who, of course grow and become adults. With this work going on for so many years

now, are Adults with Autism being studied?

THis question pertains both to those in these {CFS parallels) groups who *were*

being studied as children...what is being found and how/what are they doing?

and also to Adults coming into studies as Adults.

In other words, similarities between CFS and Adult with Autism. Re: symptoms,

blood work, functioning, and treatments.

Parallels with CFS, etc.

4)

When you, Amy, or others compare CFS and Autism, which CFS model are you using?

As in ME/CFS...CCDef., Fukuda, " CFS-like " , viral onset, neurological, severe,

bedridden, ambulatory, etc.

Are the Autistic children at all levels of functioning?

Hope this makes sense,

Thank you!

Katrina

>

> Hi, all.

>

> As most of you are aware, during the past few months I have been

> promoting the hypothesis that the genetics and biochemistry that

> underly many cases of CFS are very similar to those involved in many

> cases of autism. I have suggested that there is a vicious circle

> CFS that involves glutathione depletion and a block in the

> methylation cycle, as was found by S. Jill et al. in autism,

> and as emphasized by both the Defeat Autism Now! organization and

> separately by Dr. Amy Yasko in her autism cases. I have encouraged

> PWCs who test low in glutathione to have the genetic variations

> panel run that is offered by Dr. Yasko at

> http://www.testing4health.com. Several of you have gone ahead and

> ordered this panel, Sue T. being the first to do so.

>

> Many of you will recall that some months ago I predicted that a

> woman named Cheri (who has given me permission to discuss her case

> on the list) who is not currently on this list, but whose mother

> (Kathy) is on the list (who has also given me permission to discuss

> her case), would turn out to have a homozygous (+/+) gene variation

> or SNP in her cystathionine beta synthase (CBS) enzyme, the so-

> called CBS (C699T) SNP. I also predicted that Kathy would

> necessarily be heterozygous in this same SNP, since Cheri received

> half her genes from Kathy. I made this prediction on the basis of

> Cheri's urinary cystathionine level, which was about 15 times the

> mean normal value, and also on her history and the seriousness of

> her illness. As you may know, Dr. Yasko has reported that the most

> seriously ill of the autistic children have the CBS SNP. Cheri has

> one of the most serious cases of CFS that I have encountered.

>

> Cheri has now received the results of her genetic variations test,

> and has shared them with me. As I predicted, she is homozygous for

> the CBS C699T SNP. Not only that, but she is also heterozygous for

> three other SNPs that interact to impact her methylation cycle,

> namely MTHFR C677T, MTR A2756G, and MTRR A66G.

>

> I have shared with her that I believe she would benefit from

> trimethylglycine, methyl B-12, folinic acid, and FolaPro. I am in

> the process of working out an order and dosing schedule for these

> supplements.

>

> Cheri also has some other SNPs, but I think these are the most

> significant ones.

>

> Kathy's genetic variations test results have not come back yet, but

> it is a foregone conclusion that she is at least heterozygous for

> the CBS SNP. I think that the fact that her illness is not as

> serious as Cheri's, nor is her urinary cystathionine as high, would

> argue that she is probably not homozygous for this SNP.

>

> I'm posting this information here for the benefit of others who may

> be trying to decide whether it would be worthwhile to have the Yasko

> panel run, since it is pretty expensive. Cheri was able to get the

> smaller 10-SNP panel, because it was still being offered when she

> applied. Currently the larger 40-SNP panel is the only one offered,

> but Dr. Yasko has begun to interpret the significance of some of

> these other SNPs in autistic children, so I expect that they will be

> relevant in some CFS cases as well. Based on what I have seen so

> far, I continue to believe that this parallel between CFS and autism

> is real in many cases, and that this genetic testing will pay off

> for many PWCs.

>

> Of course, we have yet to see whether the targeted supplements will

> bring about improvement in Cheri's case, but I can say that the

> symptoms she has reported experiencing are consistent with what Dr.

> Yasko has found in autistic children with CBS SNPs, and the genetic

> results are consistent with her urinary amino acid test results, so

> I believe we are finally on the right track in her case.

>

> Rich

>

[Guest guest]

Hi, Katrina.

> >

> > Hi, all.

> >

> > As most of you are aware, during the past few months I have been

> > promoting the hypothesis that the genetics and biochemistry that

> > underly many cases of CFS are very similar to those involved in

many

> > cases of autism. I have suggested that there is a vicious

circle

> > CFS that involves glutathione depletion and a block in the

> > methylation cycle, as was found by S. Jill et al. in

autism,

> > and as emphasized by both the Defeat Autism Now! organization

and

> > separately by Dr. Amy Yasko in her autism cases. I have

encouraged

> > PWCs who test low in glutathione to have the genetic variations

> > panel run that is offered by Dr. Yasko at

> > http://www.testing4health.com. Several of you have gone ahead

and

> > ordered this panel, Sue T. being the first to do so.

> >

> > Many of you will recall that some months ago I predicted that a

> > woman named Cheri (who has given me permission to discuss her

case

> > on the list) who is not currently on this list, but whose mother

> > (Kathy) is on the list (who has also given me permission to

discuss

> > her case), would turn out to have a homozygous (+/+) gene

variation

> > or SNP in her cystathionine beta synthase (CBS) enzyme, the so-

> > called CBS (C699T) SNP. I also predicted that Kathy would

> > necessarily be heterozygous in this same SNP, since Cheri

received

> > half her genes from Kathy. I made this prediction on the basis

of

> > Cheri's urinary cystathionine level, which was about 15 times

the

> > mean normal value, and also on her history and the seriousness

of

> > her illness. As you may know, Dr. Yasko has reported that the

most

> > seriously ill of the autistic children have the CBS SNP. Cheri

has

> > one of the most serious cases of CFS that I have encountered.

> >

> > Cheri has now received the results of her genetic variations

test,

> > and has shared them with me. As I predicted, she is homozygous

for

> > the CBS C699T SNP. Not only that, but she is also heterozygous

for

> > three other SNPs that interact to impact her methylation cycle,

> > namely MTHFR C677T, MTR A2756G, and MTRR A66G.

> >

> > I have shared with her that I believe she would benefit from

> > trimethylglycine, methyl B-12, folinic acid, and FolaPro. I am

in

> > the process of working out an order and dosing schedule for

these

> > supplements.

> >

> > Cheri also has some other SNPs, but I think these are the most

> > significant ones.

> >

> > Kathy's genetic variations test results have not come back yet,

but

> > it is a foregone conclusion that she is at least heterozygous

for

> > the CBS SNP. I think that the fact that her illness is not as

> > serious as Cheri's, nor is her urinary cystathionine as high,

would

> > argue that she is probably not homozygous for this SNP.

> >

> > I'm posting this information here for the benefit of others who

may

> > be trying to decide whether it would be worthwhile to have the

Yasko

> > panel run, since it is pretty expensive. Cheri was able to get

the

> > smaller 10-SNP panel, because it was still being offered when

she

> > applied. Currently the larger 40-SNP panel is the only one

offered,

> > but Dr. Yasko has begun to interpret the significance of some of

> > these other SNPs in autistic children, so I expect that they

will be

> > relevant in some CFS cases as well. Based on what I have seen

so

> > far, I continue to believe that this parallel between CFS and

autism

> > is real in many cases, and that this genetic testing will pay

off

> > for many PWCs.

> >

> > Of course, we have yet to see whether the targeted supplements

will

> > bring about improvement in Cheri's case, but I can say that the

> > symptoms she has reported experiencing are consistent with what

Dr.

> > Yasko has found in autistic children with CBS SNPs, and the

genetic

> > results are consistent with her urinary amino acid test results,

so

> > I believe we are finally on the right track in her case.

> >

> > Rich

> >

>

[Guest guest]

Rich,

Sadly to say, I cannot access any audio (would definitely have listned!). Nor do

well reading books these days, for multiple reasons. I can last a little longer

reading on-line. I'll read the posts!...don't know how I missed those.

Thank you, Rich

Katrina

> > >

> > > Hi, all.

> > >

> > > As most of you are aware, during the past few months I have been

> > > promoting the hypothesis that the genetics and biochemistry that

> > > underly many cases of CFS are very similar to those involved in

> many

> > > cases of autism. I have suggested that there is a vicious

> circle

> > > CFS that involves glutathione depletion and a block in the

> > > methylation cycle, as was found by S. Jill et al. in

> autism,

> > > and as emphasized by both the Defeat Autism Now! organization

> and

> > > separately by Dr. Amy Yasko in her autism cases. I have

> encouraged

> > > PWCs who test low in glutathione to have the genetic variations

> > > panel run that is offered by Dr. Yasko at

> > > http://www.testing4health.com. Several of you have gone ahead

> and

> > > ordered this panel, Sue T. being the first to do so.

> > >

> > > Many of you will recall that some months ago I predicted that a

> > > woman named Cheri (who has given me permission to discuss her

> case

> > > on the list) who is not currently on this list, but whose mother

> > > (Kathy) is on the list (who has also given me permission to

> discuss

> > > her case), would turn out to have a homozygous (+/+) gene

> variation

> > > or SNP in her cystathionine beta synthase (CBS) enzyme, the so-

> > > called CBS (C699T) SNP. I also predicted that Kathy would

> > > necessarily be heterozygous in this same SNP, since Cheri

> received

> > > half her genes from Kathy. I made this prediction on the basis

> of

> > > Cheri's urinary cystathionine level, which was about 15 times

> the

> > > mean normal value, and also on her history and the seriousness

> of

> > > her illness. As you may know, Dr. Yasko has reported that the

> most

> > > seriously ill of the autistic children have the CBS SNP. Cheri

> has

> > > one of the most serious cases of CFS that I have encountered.

> > >

> > > Cheri has now received the results of her genetic variations

> test,

> > > and has shared them with me. As I predicted, she is homozygous

> for

> > > the CBS C699T SNP. Not only that, but she is also heterozygous

> for

> > > three other SNPs that interact to impact her methylation cycle,

> > > namely MTHFR C677T, MTR A2756G, and MTRR A66G.

> > >

> > > I have shared with her that I believe she would benefit from

> > > trimethylglycine, methyl B-12, folinic acid, and FolaPro. I am

> in

> > > the process of working out an order and dosing schedule for

> these

> > > supplements.

> > >

> > > Cheri also has some other SNPs, but I think these are the most

> > > significant ones.

> > >

> > > Kathy's genetic variations test results have not come back yet,

> but

> > > it is a foregone conclusion that she is at least heterozygous

> for

> > > the CBS SNP. I think that the fact that her illness is not as

> > > serious as Cheri's, nor is her urinary cystathionine as high,

> would

> > > argue that she is probably not homozygous for this SNP.

> > >

> > > I'm posting this information here for the benefit of others who

> may

> > > be trying to decide whether it would be worthwhile to have the

> Yasko

> > > panel run, since it is pretty expensive. Cheri was able to get

> the

> > > smaller 10-SNP panel, because it was still being offered when

> she

> > > applied. Currently the larger 40-SNP panel is the only one

> offered,

> > > but Dr. Yasko has begun to interpret the significance of some of

> > > these other SNPs in autistic children, so I expect that they

> will be

> > > relevant in some CFS cases as well. Based on what I have seen

> so

> > > far, I continue to believe that this parallel between CFS and

> autism

> > > is real in many cases, and that this genetic testing will pay

> off

> > > for many PWCs.

> > >

> > > Of course, we have yet to see whether the targeted supplements

> will

> > > bring about improvement in Cheri's case, but I can say that the

> > > symptoms she has reported experiencing are consistent with what

> Dr.

> > > Yasko has found in autistic children with CBS SNPs, and the

> genetic

> > > results are consistent with her urinary amino acid test results,

> so

> > > I believe we are finally on the right track in her case.

> > >

> > > Rich

> > >

> >

>

[Guest guest]

Hi, Katrina.

I'm sorry about that.

I do want to address your question about adults with autism compared

with adults with CFS. These are the same in some ways, and very

different in others. The important thing is that the onset of

autism occurs before the age of three, which is before the brain is

fully developed. When this vicious circle is set up at such an

early age, it blocks the development of the brain, and there is a

window of time during which this can be reversed, so that the brain

will go on to more or less complete development. If this vicious

circle is not reversed during this early time window, the resulting

adult with autism will not be able to experience complete brain

development, even if the vicious circle is broken later in his

life. Lots of other biochemical dysfunction can probably be fixed,

but the brain will still be an autistic brain, I think.

The adult with CFS is a different animal in this respect. The onset

of CFS occurs after the brain is fully developed. In that case, I

think that breaking the vicious circle can result in a much more

normal state of health. I hope to live long enough to see this

happen for a lot of people.

I think the big differences between autism and CFS result from the

different age at onset. I think this age difference is responsible

for the opposite sex ratios in prevalence of the two disorders,

too. The genetic predisposition appears to be the same or similar

for autism and CFS. The triggering factors for autism appear to be

primarily mercury (from vaccinations as well as exposures of the

mother prenatally) and live viruses in vaccines, which place demands

on glutathione. The toxicity of mercury appears to be exacerbated

by testosterone, which baby boys actually have more of. CFS

predominately strikes women of childbearing age, and I think the

oxidative stress involved in the rapid monthly building of

endometrial tissue places a demand on glutathione that males don't

experience.

The other issue is fatigue. Are autistic kids fatigued? At first

sight, they are hyperactive. But perhaps the hyperactivity is

masking fatigue. I think this needs more investigation. Laurette

told me that her autistic daughter becomes more hyperactive the more

tired she is. So maybe that's what's going on.

Beyond these factors, pretty much everything we compared between CFS

and autism turned out to be the same.

Rich

> > > >

> > > > Hi, all.

> > > >

> > > > As most of you are aware, during the past few months I have

been

> > > > promoting the hypothesis that the genetics and biochemistry

that

> > > > underly many cases of CFS are very similar to those involved

in

> > many

> > > > cases of autism. I have suggested that there is a vicious

> > circle

> > > > CFS that involves glutathione depletion and a block in the

> > > > methylation cycle, as was found by S. Jill et al. in

> > autism,

> > > > and as emphasized by both the Defeat Autism Now!

organization

> > and

> > > > separately by Dr. Amy Yasko in her autism cases. I have

> > encouraged

> > > > PWCs who test low in glutathione to have the genetic

variations

> > > > panel run that is offered by Dr. Yasko at

> > > > http://www.testing4health.com. Several of you have gone

ahead

> > and

> > > > ordered this panel, Sue T. being the first to do so.

> > > >

> > > > Many of you will recall that some months ago I predicted

that a

> > > > woman named Cheri (who has given me permission to discuss

her

> > case

> > > > on the list) who is not currently on this list, but whose

mother

> > > > (Kathy) is on the list (who has also given me permission to

> > discuss

> > > > her case), would turn out to have a homozygous (+/+) gene

> > variation

> > > > or SNP in her cystathionine beta synthase (CBS) enzyme, the

so-

> > > > called CBS (C699T) SNP. I also predicted that Kathy would

> > > > necessarily be heterozygous in this same SNP, since Cheri

> > received

> > > > half her genes from Kathy. I made this prediction on the

basis

> > of

> > > > Cheri's urinary cystathionine level, which was about 15

times

> > the

> > > > mean normal value, and also on her history and the

seriousness

> > of

> > > > her illness. As you may know, Dr. Yasko has reported that

the

> > most

> > > > seriously ill of the autistic children have the CBS SNP.

Cheri

> > has

> > > > one of the most serious cases of CFS that I have encountered.

> > > >

> > > > Cheri has now received the results of her genetic variations

> > test,

> > > > and has shared them with me. As I predicted, she is

homozygous

> > for

> > > > the CBS C699T SNP. Not only that, but she is also

heterozygous

> > for

> > > > three other SNPs that interact to impact her methylation

cycle,

> > > > namely MTHFR C677T, MTR A2756G, and MTRR A66G.

> > > >

> > > > I have shared with her that I believe she would benefit from

> > > > trimethylglycine, methyl B-12, folinic acid, and FolaPro. I

am

> > in

> > > > the process of working out an order and dosing schedule for

> > these

> > > > supplements.

> > > >

> > > > Cheri also has some other SNPs, but I think these are the

most

> > > > significant ones.

> > > >

> > > > Kathy's genetic variations test results have not come back

yet,

> > but

> > > > it is a foregone conclusion that she is at least

heterozygous

> > for

> > > > the CBS SNP. I think that the fact that her illness is not

as

> > > > serious as Cheri's, nor is her urinary cystathionine as

high,

> > would

> > > > argue that she is probably not homozygous for this SNP.

> > > >

> > > > I'm posting this information here for the benefit of others

who

> > may

> > > > be trying to decide whether it would be worthwhile to have

the

> > Yasko

> > > > panel run, since it is pretty expensive. Cheri was able to

get

> > the

> > > > smaller 10-SNP panel, because it was still being offered

when

> > she

> > > > applied. Currently the larger 40-SNP panel is the only one

> > offered,

> > > > but Dr. Yasko has begun to interpret the significance of

some of

> > > > these other SNPs in autistic children, so I expect that they

> > will be

> > > > relevant in some CFS cases as well. Based on what I have

seen

> > so

> > > > far, I continue to believe that this parallel between CFS

and

> > autism

> > > > is real in many cases, and that this genetic testing will

pay

> > off

> > > > for many PWCs.

> > > >

> > > > Of course, we have yet to see whether the targeted

supplements

> > will

> > > > bring about improvement in Cheri's case, but I can say that

the

> > > > symptoms she has reported experiencing are consistent with

what

> > Dr.

> > > > Yasko has found in autistic children with CBS SNPs, and the

> > genetic

> > > > results are consistent with her urinary amino acid test

results,

> > so

> > > > I believe we are finally on the right track in her case.

> > > >

> > > > Rich

> > > >

> > >

> >

>

[Guest guest]

I think getting hyper is a common response to fatigue. I really start spinning

my wheels and sometimes have to load up on carbs to relax.

I have not raised kids, but I know I have seen them get hyper before finally

crashing and burning.

Can Laurette be sure it isn't the other way round; that the mounting hyperness

causes the fatigue?

Adrienne

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

From: rvankonynen

.

The other issue is fatigue. Are autistic kids fatigued? At first

sight, they are hyperactive. But perhaps the hyperactivity is

masking fatigue. I think this needs more investigation. Laurette

told me that her autistic daughter becomes more hyperactive the more

tired she is.

[Guest guest]

This became true for me after CFIDS...wired and fried...we used to say that in

my Support group.

It's very common with young children too. I don't think it's that alone that the

hyper causes fatigue...I have cared for many, and recognise the start...tired

approaches, *then*

hyper, play or irritable, various lengths of time...accident prone...senses

off...fighting sleep? Probably several things happening...some people give them

a cookie to quiet them...groan! I might give myself a cookie to stay

awake...groan!

What carbs do you use?

Thanks,

Katrina

>

> I think getting hyper is a common response to fatigue. I really start spinning

my wheels and sometimes have to load up on carbs to relax.

> I have not raised kids, but I know I have seen them get hyper before finally

crashing and burning.

> Can Laurette be sure it isn't the other way round; that the mounting hyperness

causes the fatigue?

> Adrienne

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

> From: rvankonynen

> .

>

> The other issue is fatigue. Are autistic kids fatigued? At first

> sight, they are hyperactive. But perhaps the hyperactivity is

> masking fatigue. I think this needs more investigation. Laurette

> told me that her autistic daughter becomes more hyperactive the more

> tired she is.

>

>

[Guest guest]

Hi, Adrienne.

Good question. I don't know. It's probably hard to say which comes

first.

Rich

>

> I think getting hyper is a common response to fatigue. I really

start spinning my wheels and sometimes have to load up on carbs to

relax.

> I have not raised kids, but I know I have seen them get hyper

before finally crashing and burning.

> Can Laurette be sure it isn't the other way round; that the

mounting hyperness causes the fatigue?

> Adrienne

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

> From: rvankonynen

> .

>

> The other issue is fatigue. Are autistic kids fatigued? At

first

> sight, they are hyperactive. But perhaps the hyperactivity is

> masking fatigue. I think this needs more investigation.

Laurette

> told me that her autistic daughter becomes more hyperactive the

more

> tired she is.

>

>

[Guest guest]

Rich, you may well be right, but then again, maybe not.

Two recent articles in the New Yorker indicate how plastic the brain

is even at a late date.

In one case, a woman with monocular vision learned/was trained to have

binocular vision in middle age. It was her brain not her eye that changed.

In the other case, children (I forget up to what age) who needed half

their brains (yes, half their brains) removed because of frequent

seizures, recovered...and some lead completely normal lives.

In other studies, in animal brains, removing portions of the brain,

the brain still assembled itself correctly, but delegating lesser

space to each region that controlled each function.

All these taken together seem to indicate the enormous plasticity of

the human brain.

So I would think an adult whose methylation cycle was corrected, if

given the correct training exercises, might move away from ASD...but

who knows what that would involve. Perhaps the kind of training

applied to kids, such as intensive play exercise, could be utilized.

> > > > >

> > > > > Hi, all.

> > > > >

> > > > > As most of you are aware, during the past few months I have

> been

> > > > > promoting the hypothesis that the genetics and biochemistry

> that

> > > > > underly many cases of CFS are very similar to those involved

> in

> > > many

> > > > > cases of autism. I have suggested that there is a vicious

> > > circle

> > > > > CFS that involves glutathione depletion and a block in the

> > > > > methylation cycle, as was found by S. Jill et al. in

> > > autism,

> > > > > and as emphasized by both the Defeat Autism Now!

> organization

> > > and

> > > > > separately by Dr. Amy Yasko in her autism cases. I have

> > > encouraged

> > > > > PWCs who test low in glutathione to have the genetic

> variations

> > > > > panel run that is offered by Dr. Yasko at

> > > > > http://www.testing4health.com. Several of you have gone

> ahead

> > > and

> > > > > ordered this panel, Sue T. being the first to do so.

> > > > >

> > > > > Many of you will recall that some months ago I predicted

> that a

> > > > > woman named Cheri (who has given me permission to discuss

> her

> > > case

> > > > > on the list) who is not currently on this list, but whose

> mother

> > > > > (Kathy) is on the list (who has also given me permission to

> > > discuss

> > > > > her case), would turn out to have a homozygous (+/+) gene

> > > variation

> > > > > or SNP in her cystathionine beta synthase (CBS) enzyme, the

> so-

> > > > > called CBS (C699T) SNP. I also predicted that Kathy would

> > > > > necessarily be heterozygous in this same SNP, since Cheri

> > > received

> > > > > half her genes from Kathy. I made this prediction on the

> basis

> > > of

> > > > > Cheri's urinary cystathionine level, which was about 15

> times

> > > the

> > > > > mean normal value, and also on her history and the

> seriousness

> > > of

> > > > > her illness. As you may know, Dr. Yasko has reported that

> the

> > > most

> > > > > seriously ill of the autistic children have the CBS SNP.

> Cheri

> > > has

> > > > > one of the most serious cases of CFS that I have encountered.

> > > > >

> > > > > Cheri has now received the results of her genetic variations

> > > test,

> > > > > and has shared them with me. As I predicted, she is

> homozygous

> > > for

> > > > > the CBS C699T SNP. Not only that, but she is also

> heterozygous

> > > for

> > > > > three other SNPs that interact to impact her methylation

> cycle,

> > > > > namely MTHFR C677T, MTR A2756G, and MTRR A66G.

> > > > >

> > > > > I have shared with her that I believe she would benefit from

> > > > > trimethylglycine, methyl B-12, folinic acid, and FolaPro. I

> am

> > > in

> > > > > the process of working out an order and dosing schedule for

> > > these

> > > > > supplements.

> > > > >

> > > > > Cheri also has some other SNPs, but I think these are the

> most

> > > > > significant ones.

> > > > >

> > > > > Kathy's genetic variations test results have not come back

> yet,

> > > but

> > > > > it is a foregone conclusion that she is at least

> heterozygous

> > > for

> > > > > the CBS SNP. I think that the fact that her illness is not

> as

> > > > > serious as Cheri's, nor is her urinary cystathionine as

> high,

> > > would

> > > > > argue that she is probably not homozygous for this SNP.

> > > > >

> > > > > I'm posting this information here for the benefit of others

> who

> > > may

> > > > > be trying to decide whether it would be worthwhile to have

> the

> > > Yasko

> > > > > panel run, since it is pretty expensive. Cheri was able to

> get

> > > the

> > > > > smaller 10-SNP panel, because it was still being offered

> when

> > > she

> > > > > applied. Currently the larger 40-SNP panel is the only one

> > > offered,

> > > > > but Dr. Yasko has begun to interpret the significance of

> some of

> > > > > these other SNPs in autistic children, so I expect that they

> > > will be

> > > > > relevant in some CFS cases as well. Based on what I have

> seen

> > > so

> > > > > far, I continue to believe that this parallel between CFS

> and

> > > autism

> > > > > is real in many cases, and that this genetic testing will

> pay

> > > off

> > > > > for many PWCs.

> > > > >

> > > > > Of course, we have yet to see whether the targeted

> supplements

> > > will

> > > > > bring about improvement in Cheri's case, but I can say that

> the

> > > > > symptoms she has reported experiencing are consistent with

> what

> > > Dr.

> > > > > Yasko has found in autistic children with CBS SNPs, and the

> > > genetic

> > > > > results are consistent with her urinary amino acid test

> results,

> > > so

> > > > > I believe we are finally on the right track in her case.

> > > > >

> > > > > Rich

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Hi, Sue.

Thanks for the news about Dr. Yasko's upcoming book. I'm looking

forward to reading what she has to say about CFS, too!

Rich

>

> Hi Katrina,

> If I may comment . . . Dr. Amy is releasing a new book in a

couple of months describing her take on CFS and the relationship to

Autism. I believe she feels that many illnesses are due to the

Methylation variations and the Autistic children are at the extreme

end of one range of getting hit the hardest. It is all related.

> I can't wait to read the book. I

> It should be available on websites soon: www.holisticheal.com

and www.testing4health.com.

> Best wishes,

> Sue T

[Guest guest]

Jill,

I'm really glad you brought up some of the stunning new findings regarding the

brain. I saw a show on the 1/2 brain removal.

Also, a couple of years ago, possibly with new technology, there was

seen/announced in Alzheimer's brains a plasticity that had not previously been

thought to exist. It adds to the excitement in the field of neurogenesis.

Which I like to follow a bit.

About Adult Autistics...they speak/write in their own words of their experiences

as children and as adults. They also speak of the differences between the two,

regarding development issue, and current treatments for children, and different

capacities among all. But something I have been fascinated with is their

accounts of compensations... " work-arounds " , sometimes developed with assistance

and sometimes on their own. { Most of this seems outside the realm of standard

or traditional treatment of Autistics}

Some are ways they have developed language and/or communication through

internet. And numerous ways to deal with social interaction, including types of

employment. And what is actually going on in their minds, as opposed to what is

seen or presumed.

I find this a rich resource in itself, and the epitome of the phrase

" Differently-abled " , as opposed to " Disabled " .

(Not to mention another look at the meaning of " normal " in our society)

But I have also found some of the explanations to be validating for some of my

CFS challenges, and compensations, and of very practical use in expanding on

those tools.

For many conditions of the brain, there exists rehab and occupational therapy,

and " speech therapy " {Under this category now, is placed testing, retraining,

and tools for brain disabilities}.

There is not this therapy tailored specifically to CFS available to us...tho

long ago, it was more in discussion as one of the needs of standard care.

I have developed " masking " , and unconscious compensations, some conscious, some

from parts of occupational and speech therapy I received, some from exploring a

bit those of others with brain disabilites, including Adult Autistics.

So, I think there is more plasticity, capacity for regeneration, a wealth of

compensatory abilities and tools than anyone is aware of. That could relieve

much of the torment of DISability we experience.

These, in *addition* to what we strive here to restore to " normal " . We do, after

all have to survive and function in the meantime and/or if we do not acheive

full restoration.

Some of this involves social " masking "

ability and some involves actual retraining and higher

practical functioning.

Katrina

> > > > > >

> > > > > > Hi, all.

> > > > > >

> > > > > > As most of you are aware, during the past few months I have

> > been

> > > > > > promoting the hypothesis that the genetics and biochemistry

> > that

> > > > > > underly many cases of CFS are very similar to those involved

> > in

> > > > many

> > > > > > cases of autism. I have suggested that there is a vicious

> > > > circle

> > > > > > CFS that involves glutathione depletion and a block in the

> > > > > > methylation cycle, as was found by S. Jill et al. in

> > > > autism,

> > > > > > and as emphasized by both the Defeat Autism Now!

> > organization

> > > > and

> > > > > > separately by Dr. Amy Yasko in her autism cases. I have

> > > > encouraged

> > > > > > PWCs who test low in glutathione to have the genetic

> > variations

> > > > > > panel run that is offered by Dr. Yasko at

> > > > > > http://www.testing4health.com. Several of you have gone

> > ahead

> > > > and

> > > > > > ordered this panel, Sue T. being the first to do so.

> > > > > >

> > > > > > Many of you will recall that some months ago I predicted

> > that a

> > > > > > woman named Cheri (who has given me permission to discuss

> > her

> > > > case

> > > > > > on the list) who is not currently on this list, but whose

> > mother

> > > > > > (Kathy) is on the list (who has also given me permission to

> > > > discuss

> > > > > > her case), would turn out to have a homozygous (+/+) gene

> > > > variation

> > > > > > or SNP in her cystathionine beta synthase (CBS) enzyme, the

> > so-

> > > > > > called CBS (C699T) SNP. I also predicted that Kathy would

> > > > > > necessarily be heterozygous in this same SNP, since Cheri

> > > > received

> > > > > > half her genes from Kathy. I made this prediction on the

> > basis

> > > > of

> > > > > > Cheri's urinary cystathionine level, which was about 15

> > times

> > > > the

> > > > > > mean normal value, and also on her history and the

> > seriousness

> > > > of

> > > > > > her illness. As you may know, Dr. Yasko has reported that

> > the

> > > > most

> > > > > > seriously ill of the autistic children have the CBS SNP.

> > Cheri

> > > > has

> > > > > > one of the most serious cases of CFS that I have encountered.

> > > > > >

> > > > > > Cheri has now received the results of her genetic variations

> > > > test,

> > > > > > and has shared them with me. As I predicted, she is

> > homozygous

> > > > for

> > > > > > the CBS C699T SNP. Not only that, but she is also

> > heterozygous

> > > > for

> > > > > > three other SNPs that interact to impact her methylation

> > cycle,

> > > > > > namely MTHFR C677T, MTR A2756G, and MTRR A66G.

> > > > > >

> > > > > > I have shared with her that I believe she would benefit from

> > > > > > trimethylglycine, methyl B-12, folinic acid, and FolaPro. I

> > am

> > > > in

> > > > > > the process of working out an order and dosing schedule for

> > > > these

> > > > > > supplements.

> > > > > >

> > > > > > Cheri also has some other SNPs, but I think these are the

> > most

> > > > > > significant ones.

> > > > > >

> > > > > > Kathy's genetic variations test results have not come back

> > yet,

> > > > but

> > > > > > it is a foregone conclusion that she is at least

> > heterozygous

> > > > for

> > > > > > the CBS SNP. I think that the fact that her illness is not

> > as

> > > > > > serious as Cheri's, nor is her urinary cystathionine as

> > high,

> > > > would

> > > > > > argue that she is probably not homozygous for this SNP.

> > > > > >

> > > > > > I'm posting this information here for the benefit of others

> > who

> > > > may

> > > > > > be trying to decide whether it would be worthwhile to have

> > the

> > > > Yasko

> > > > > > panel run, since it is pretty expensive. Cheri was able to

> > get

> > > > the

> > > > > > smaller 10-SNP panel, because it was still being offered

> > when

> > > > she

> > > > > > applied. Currently the larger 40-SNP panel is the only one

> > > > offered,

> > > > > > but Dr. Yasko has begun to interpret the significance of

> > some of

> > > > > > these other SNPs in autistic children, so I expect that they

> > > > will be

> > > > > > relevant in some CFS cases as well. Based on what I have

> > seen

> > > > so

> > > > > > far, I continue to believe that this parallel between CFS

> > and

> > > > autism

> > > > > > is real in many cases, and that this genetic testing will

> > pay

> > > > off

> > > > > > for many PWCs.

> > > > > >

> > > > > > Of course, we have yet to see whether the targeted

> > supplements

> > > > will

> > > > > > bring about improvement in Cheri's case, but I can say that

> > the

> > > > > > symptoms she has reported experiencing are consistent with

> > what

> > > > Dr.

> > > > > > Yasko has found in autistic children with CBS SNPs, and the

> > > > genetic

> > > > > > results are consistent with her urinary amino acid test

> > results,

> > > > so

> > > > > > I believe we are finally on the right track in her case.

> > > > > >

> > > > > > Rich

> > > > > >

> > > > >

> > > >

> > >

> >

>