Re: Mothers with CFS who have children with autism?

[Guest guest]

Hi Rich -

Welcome!

I didn't get an 'official' diagnosis of CFS during

it's peak (age 18-26) - I had been sick so long I was

used to it and didn't really realize the severity of

the impact until I began to recover around age 27.

I would participate in a study if one arose. I am

having some CFS-type symptoms again after 2 year fever

and strep (PANDAS first, then it went away and left

CFS in it's wake, also getting better). The interest

is there.

I'm curious about info on very high levels of folic

acid. I have high (not very, but elevated) folic acid

and low B12, but I know of another child who had Folic

acid levels thru the roof and no one understands why.

Dr G once described the CFS/autism/even ADHD

connection this way (as well as I remember it) -

comparing what happens when the cognitive dysfunction

hits in an adult ... imagine it hitting in a child who

hasn't fully developed yet (before 2) - how the

development can get so messed up and result in the

problems so familiar with autistic kids. Dysfunction

hits a little later in development, you may get

ADD/ADHD/LD, maybe even Aspergers. (That is nowhere

near as eloquently as he put it but it's a general

gist...)

--- rvankonynen <richvank@...> wrote:

> Hello, everyone.

>

> My name is Rich Van Konynenburg. I just joined this

> group this

> morning. I am an independent researcher, and have

> been studying CFS

> for the past ten years. For several years, I

> focused primarily on

> the role of glutathione depletion in CFS. I realize

> that this is a

> different orientation from the neuroimmune concept,

> but I believe

> that they are related. In fact, I presented a

> poster paper at the

> 2004 meeting of the American Association for Chronic

> Fatigue

> Syndrome that discussed these connections. It can

> be found here:

>

>

http://www.cfsresearch.org/cfs/research/treatment/15.htm

>

> In this paper I discussed, among other things, the

> effects of

> glutathione depletion on suppression of the immune

> system and

> reactivation of latent viral infections. I believe

> this might be a

> connection between the interest of Dr. Goldberg and

> this group and

> my own research.

>

> In late 2004, a paper was published by S. Jill

> et al. that

> showed that glutathione was also depleted in autism,

> that it was

> linked to a block in the methylation cycle, and that

> this block

> could be removed by the use of methylcobalamin,

> folinic acid and

> TMG, allowing glutathione to rise back into the

> normal range. Later

> work has shown that these abnormalities are

> associated with genetic

> variations (polymorphisms or SNPs) in enzymes and

> other proteins

> that impact the methylation cycle.

>

> When I read that paper, I began to suspect that

> these same genetic

> and biochemical issues are involved in CFS. At that

> point, I wrote

> the following article, which I sent to several CFS

> internet groups:

>

>

http://www.cfsresearch.org/cfs/research/treatment/20.htm

>

> Several people with CFS have now voluntarily chosen

> to pursue the

> treatment approach used by the DAN! project and also

> the approach of

> Dr. Amy Yasko. We are still in the early stages of

> finding out how

> well this will work. People doing this are

> reporting their results

> to the group, also in

> groups.

>

> Incidentally, as I have learned more about Dr.

> Yasko's work, I think

> that another connection of this vicious circle

> (involving

> glutathione depletion and methylation cycle block)

> to the immune

> system is that this mechanism impacts the folate

> metabolism, which

> interferes with the synthesis of new DNA and RNA,

> which are

> essential for the proliferation of lymphocytes,

> which in turn is

> necessary to mount an effective cell-mediated immune

> response.

> Thus, I think there are clear connections between

> this genetic and

> biochemical mechanism and the immune suppression and

> viral infection

> phenomena that Dr. Goldberg and the

> organization have

> identified and emphasized.

>

> One of the people who read my article and became

> interested in the

> connection between autism and CFS was Laurette

> Janak, who was a

> coauthor on the S. Jill et al. paper that I

> mentioned above.

> She has noted that there appear to be quite a few

> mothers of

> autistic children who have CFS themselves. She

> contacted me, and we

> have been interacting about this topic for the past

> few days,

> finding more and more parallels between these two

> disorders. In the

> course of this, I recalled Dr. Goldberg's pointing

> out this

> connection many years ago. At that time, I knew

> very little about

> autism, and I think there was also not much

> fundamental

> understanding of the genetics and biochemistry of

> autism, so I

> didn't pursue the connection at that time. However,

> in the past

> several years, much more has been learned about

> autism, and now I

> think we are beginning to understand the connections

> at a more

> fundamental level.

>

> The reason I am writing to this group now is that

> there is a

> possibility that some research may be done looking

> at some

> substances in the blood of autism mothers who have

> CFS themselves.

> These would be the same substances that were studied

> in the research

> reported above on autistic children. If this work

> is done and comes

> out the way I think it will, I believe it will

> improve our

> understanding of these disorders at a very

> fundamental level, and

> will also provide a basis for more effective

> treatment of CFS,

> getting to root causes rather than treating the wide

> variety of

> individual symtpoms, as has been the practice in the

> past.

>

> So I'm wondering if there are mothers of autistic

> spectrum children

> in this group who have been diagnosed themselves

> with CFS (or if

> people here know mothers who fit this description),

> using the

> recognized international Fukuda et al. criteria for

> CFS as developed

> by a committee assembled at the Centers for Disease

> Control and

> Prevention in 1994. If there are such mothers here,

> I'm wondering

> if you would be willing to consider participating in

> such a study,

> if it could be done. Please note that I am not

> promising that this

> will happen. We are in the early stages of

> considering this, and

> one of the considerations is whether there are

> mothers who would be

> interested in participating. It would involve

> supplying blood

> samples for testing. So I'm really asking whether

> there are mothers

> here who might be candidates for such a study, or if

> you know of any

> who are not on this list, and whether they would

> consider

> partipating. I'm not asking for a commitment at

> this time, just a

> show of interest.

>

> Thank you.

>

> Rich Van Konynenburg, Ph.D.

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

,

I'm curious about the folic acid, as a biologically minded nutritionist I see

diagnosed me with hystadelia - - which is probably a controversial diagnosis,

but I didn't care as it fit me to a 'T. " The only time I have ever supplemented

with folic acid was surrounding my 3 pregnancies. With my 1st pregnancy I took

it pre-pregnancy and the entire 9 months (but immediately stopped after giving

birth) & I developed post partum psychosis for several days after I gave birth

to my daughter. The next 2 pregnancies, I followed a gut instinct to end the

folic acid in the first trimester and had no PP psychosis. I avoid folic acid

like the plague!

- (also CFS & interested in the study)

<thecolemans4@...> wrote:

Hi Rich -

Welcome!

I didn't get an 'official' diagnosis of CFS during

it's peak (age 18-26) - I had been sick so long I was

used to it and didn't really realize the severity of

the impact until I began to recover around age 27.

I would participate in a study if one arose. I am

having some CFS-type symptoms again after 2 year fever

and strep (PANDAS first, then it went away and left

CFS in it's wake, also getting better). The interest

is there.

I'm curious about info on very high levels of folic

acid. I have high (not very, but elevated) folic acid

and low B12, but I know of another child who had Folic

acid levels thru the roof and no one understands why.

Dr G once described the CFS/autism/even ADHD

connection this way (as well as I remember it) -

comparing what happens when the cognitive dysfunction

hits in an adult ... imagine it hitting in a child who

hasn't fully developed yet (before 2) - how the

development can get so messed up and result in the

problems so familiar with autistic kids. Dysfunction

hits a little later in development, you may get

ADD/ADHD/LD, maybe even Aspergers. (That is nowhere

near as eloquently as he put it but it's a general

gist...)

--- rvankonynen <richvank@...> wrote:

> Hello, everyone.

>

> My name is Rich Van Konynenburg. I just joined this

> group this

> morning. I am an independent researcher, and have

> been studying CFS

> for the past ten years. For several years, I

> focused primarily on

> the role of glutathione depletion in CFS. I realize

> that this is a

> different orientation from the neuroimmune concept,

> but I believe

> that they are related. In fact, I presented a

> poster paper at the

> 2004 meeting of the American Association for Chronic

> Fatigue

> Syndrome that discussed these connections. It can

> be found here:

>

>

http://www.cfsresearch.org/cfs/research/treatment/15.htm

>

> In this paper I discussed, among other things, the

> effects of

> glutathione depletion on suppression of the immune

> system and

> reactivation of latent viral infections. I believe

> this might be a

> connection between the interest of Dr. Goldberg and

> this group and

> my own research.

>

> In late 2004, a paper was published by S. Jill

> et al. that

> showed that glutathione was also depleted in autism,

> that it was

> linked to a block in the methylation cycle, and that

> this block

> could be removed by the use of methylcobalamin,

> folinic acid and

> TMG, allowing glutathione to rise back into the

> normal range. Later

> work has shown that these abnormalities are

> associated with genetic

> variations (polymorphisms or SNPs) in enzymes and

> other proteins

> that impact the methylation cycle.

>

> When I read that paper, I began to suspect that

> these same genetic

> and biochemical issues are involved in CFS. At that

> point, I wrote

> the following article, which I sent to several CFS

> internet groups:

>

>

http://www.cfsresearch.org/cfs/research/treatment/20.htm

>

> Several people with CFS have now voluntarily chosen

> to pursue the

> treatment approach used by the DAN! project and also

> the approach of

> Dr. Amy Yasko. We are still in the early stages of

> finding out how

> well this will work. People doing this are

> reporting their results

> to the group, also in

> groups.

>

> Incidentally, as I have learned more about Dr.

> Yasko's work, I think

> that another connection of this vicious circle

> (involving

> glutathione depletion and methylation cycle block)

> to the immune

> system is that this mechanism impacts the folate

> metabolism, which

> interferes with the synthesis of new DNA and RNA,

> which are

> essential for the proliferation of lymphocytes,

> which in turn is

> necessary to mount an effective cell-mediated immune

> response.

> Thus, I think there are clear connections between

> this genetic and

> biochemical mechanism and the immune suppression and

> viral infection

> phenomena that Dr. Goldberg and the

> organization have

> identified and emphasized.

>

> One of the people who read my article and became

> interested in the

> connection between autism and CFS was Laurette

> Janak, who was a

> coauthor on the S. Jill et al. paper that I

> mentioned above.

> She has noted that there appear to be quite a few

> mothers of

> autistic children who have CFS themselves. She

> contacted me, and we

> have been interacting about this topic for the past

> few days,

> finding more and more parallels between these two

> disorders. In the

> course of this, I recalled Dr. Goldberg's pointing

> out this

> connection many years ago. At that time, I knew

> very little about

> autism, and I think there was also not much

> fundamental

> understanding of the genetics and biochemistry of

> autism, so I

> didn't pursue the connection at that time. However,

> in the past

> several years, much more has been learned about

> autism, and now I

> think we are beginning to understand the connections

> at a more

> fundamental level.

>

> The reason I am writing to this group now is that

> there is a

> possibility that some research may be done looking

> at some

> substances in the blood of autism mothers who have

> CFS themselves.

> These would be the same substances that were studied

> in the research

> reported above on autistic children. If this work

> is done and comes

> out the way I think it will, I believe it will

> improve our

> understanding of these disorders at a very

> fundamental level, and

> will also provide a basis for more effective

> treatment of CFS,

> getting to root causes rather than treating the wide

> variety of

> individual symtpoms, as has been the practice in the

> past.

>

> So I'm wondering if there are mothers of autistic

> spectrum children

> in this group who have been diagnosed themselves

> with CFS (or if

> people here know mothers who fit this description),

> using the

> recognized international Fukuda et al. criteria for

> CFS as developed

> by a committee assembled at the Centers for Disease

> Control and

> Prevention in 1994. If there are such mothers here,

> I'm wondering

> if you would be willing to consider participating in

> such a study,

> if it could be done. Please note that I am not

> promising that this

> will happen. We are in the early stages of

> considering this, and

> one of the considerations is whether there are

> mothers who would be

> interested in participating. It would involve

> supplying blood

> samples for testing. So I'm really asking whether

> there are mothers

> here who might be candidates for such a study, or if

> you know of any

> who are not on this list, and whether they would

> consider

> partipating. I'm not asking for a commitment at

> this time, just a

> show of interest.

>

> Thank you.

>

> Rich Van Konynenburg, Ph.D.

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi -

I also avoid folic acid like the plague! Not only do

my fingertips start tingling when I've taken a vitamin

w/folic acid (also I sometimes go nuts and eat a whole

bunch of sunflower seeds - I start and cannot stop),

and I feel very neurotic at the same time. I forget

what the neurological connection was, but it had

something to do w/ strep and the anemias.

Did your kids ever have high levels of folic acid in

their results?

--- Rob or Sunseri <RobRose@...>

wrote:

> ,

>

> I'm curious about the folic acid, as a

> biologically minded nutritionist I see diagnosed me

> with hystadelia - - which is probably a

> controversial diagnosis, but I didn't care as it fit

> me to a 'T. " The only time I have ever supplemented

> with folic acid was surrounding my 3 pregnancies.

> With my 1st pregnancy I took it pre-pregnancy and

> the entire 9 months (but immediately stopped after

> giving birth) & I developed post partum psychosis

> for several days after I gave birth to my daughter.

> The next 2 pregnancies, I followed a gut instinct to

> end the folic acid in the first trimester and had no

> PP psychosis. I avoid folic acid like the plague!

>

__________________________________________________

[Guest guest]

Rich,

In your research, was glutathione promotion actually tested and if so how did

it fare? We use the MB-12 to promote glut and recently decided to give TD-glut

a try. I would like to know your findings.

-

Hello, everyone.

>

> My name is Rich Van Konynenburg. I just joined this

> group this

> morning. I am an independent researcher, and have

> been studying CFS

> for the past ten years. For several years, I

> focused primarily on

> the role of glutathione depletion in CFS. I realize

> that this is a

> different orientation from the neuroimmune concept,

> but I believe

> that they are related. In fact, I presented a

> poster paper at the

> 2004 meeting of the American Association for Chronic

> Fatigue

> Syndrome that discussed these connections. It can

> be found here:

>

>

http://www.cfsresearch.org/cfs/research/treatment/15.htm

>

> In this paper I discussed, among other things, the

> effects of

> glutathione depletion on suppression of the immune

> system and

> reactivation of latent viral infections. I believe

> this might be a

> connection between the interest of Dr. Goldberg and

> this group and

> my own research.

>

> In late 2004, a paper was published by S. Jill

> et al. that

> showed that glutathione was also depleted in autism,

> that it was

> linked to a block in the methylation cycle, and that

> this block

> could be removed by the use of methylcobalamin,

> folinic acid and

> TMG, allowing glutathione to rise back into the

> normal range. Later

> work has shown that these abnormalities are

> associated with genetic

> variations (polymorphisms or SNPs) in enzymes and

> other proteins

> that impact the methylation cycle.

>

> When I read that paper, I began to suspect that

> these same genetic

> and biochemical issues are involved in CFS. At that

> point, I wrote

> the following article, which I sent to several CFS

> internet groups:

>

>

http://www.cfsresearch.org/cfs/research/treatment/20.htm

>

> Several people with CFS have now voluntarily chosen

> to pursue the

> treatment approach used by the DAN! project and also

> the approach of

> Dr. Amy Yasko. We are still in the early stages of

> finding out how

> well this will work. People doing this are

> reporting their results

> to the group, also in

> groups.

>

> Incidentally, as I have learned more about Dr.

> Yasko's work, I think

> that another connection of this vicious circle

> (involving

> glutathione depletion and methylation cycle block)

> to the immune

> system is that this mechanism impacts the folate

> metabolism, which

> interferes with the synthesis of new DNA and RNA,

> which are

> essential for the proliferation of lymphocytes,

> which in turn is

> necessary to mount an effective cell-mediated immune

> response.

> Thus, I think there are clear connections between

> this genetic and

> biochemical mechanism and the immune suppression and

> viral infection

> phenomena that Dr. Goldberg and the

> organization have

> identified and emphasized.

>

> One of the people who read my article and became

> interested in the

> connection between autism and CFS was Laurette

> Janak, who was a

> coauthor on the S. Jill et al. paper that I

> mentioned above.

> She has noted that there appear to be quite a few

> mothers of

> autistic children who have CFS themselves. She

> contacted me, and we

> have been interacting about this topic for the past

> few days,

> finding more and more parallels between these two

> disorders. In the

> course of this, I recalled Dr. Goldberg's pointing

> out this

> connection many years ago. At that time, I knew

> very little about

> autism, and I think there was also not much

> fundamental

> understanding of the genetics and biochemistry of

> autism, so I

> didn't pursue the connection at that time. However,

> in the past

> several years, much more has been learned about

> autism, and now I

> think we are beginning to understand the connections

> at a more

> fundamental level.

>

> The reason I am writing to this group now is that

> there is a

> possibility that some research may be done looking

> at some

> substances in the blood of autism mothers who have

> CFS themselves.

> These would be the same substances that were studied

> in the research

> reported above on autistic children. If this work

> is done and comes

> out the way I think it will, I believe it will

> improve our

> understanding of these disorders at a very

> fundamental level, and

> will also provide a basis for more effective

> treatment of CFS,

> getting to root causes rather than treating the wide

> variety of

> individual symtpoms, as has been the practice in the

> past.

>

> So I'm wondering if there are mothers of autistic

> spectrum children

> in this group who have been diagnosed themselves

> with CFS (or if

> people here know mothers who fit this description),

> using the

> recognized international Fukuda et al. criteria for

> CFS as developed

> by a committee assembled at the Centers for Disease

> Control and

> Prevention in 1994. If there are such mothers here,

> I'm wondering

> if you would be willing to consider participating in

> such a study,

> if it could be done. Please note that I am not

> promising that this

> will happen. We are in the early stages of

> considering this, and

> one of the considerations is whether there are

> mothers who would be

> interested in participating. It would involve

> supplying blood

> samples for testing. So I'm really asking whether

> there are mothers

> here who might be candidates for such a study, or if

> you know of any

> who are not on this list, and whether they would

> consider

> partipating. I'm not asking for a commitment at

> this time, just a

> show of interest.

>

> Thank you.

>

> Rich Van Konynenburg, Ph.D.

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi, .

Thanks for your message.

Please note that my work has been focused on CFS rather than on

autism. I don't know of any controlled trial of attempting to build

glutathione by a direct approach in CFS. I do know of considerable

anecdotal experience from people primarily on the

list who have tried to build glutathione by either the use of oral

nondenatured (native) whey protein products (such as ImmunePro Rx or

RenewPro) or by I.M. or I.V. injections of glutathione. A small

number of them have been successful in raising their glutathione by

this direct approach, but I would say that most were not able to do

it. That's why I have been happy to find out about the approaches

used by the DAN! group and by Dr. Amy Yasko in autism, in which the

methylation cycle is supported first, and this allows the glutathione

level to build up naturally. I am still coming up to speed on this

approach. I am finding out that there are many different combinations

of the relevant genetic variations that people can have, and the

treatments vary depending on their particular combinations. Have you

done testing to find out whether MB-12 is the right one in your case,

or if it is the only one that should be used?

Quite a few of the people with CFS are now trying the liposomal

glutathione products, of which I think there are currently four on the

market (Lipoceutical Glutathione, Essential GSH, LipoFlow and

Glutathione Specialist). If you are treating a young child, these

products might not be practical, but for people who will swallow a

liquid treatment, they appear to be effective ways of getting

glutathione into the cells. They are fairly expensive, however.

Rich

--- In , Rob or Sunseri <RobRose@...>

wrote:

>

> Rich,

>

> In your research, was glutathione promotion actually tested and if

so how did it fare? We use the MB-12 to promote glut and recently

decided to give TD-glut a try. I would like to know your findings.

>

> -

[Guest guest]

Hi, .

***My comments are at the asterisks below.

--- In , <thecolemans4@...>

wrote:

>

> Hi Rich -

>

> Welcome!

***Thank you!

>

> I didn't get an 'official' diagnosis of CFS during

> it's peak (age 18-26) - I had been sick so long I was

> used to it and didn't really realize the severity of

> the impact until I began to recover around age 27.

>

> I would participate in a study if one arose. I am

> having some CFS-type symptoms again after 2 year fever

> and strep (PANDAS first, then it went away and left

> CFS in it's wake, also getting better). The interest

> is there.

***O.K., I'll keep you in mind. CFS does tend to ralapse and remit

in a lot of people.

>

> I'm curious about info on very high levels of folic

> acid. I have high (not very, but elevated) folic acid

> and low B12, but I know of another child who had Folic

> acid levels thru the roof and no one understands why.

***I am just getting up to speed on this myself, but as I understand

it, the folate metabolism is quite complex, with many different

forms of folate. When a person is genetically not able to convert

from one type to another as readily as normal, they can get into

what is called a " folate trap. " This means that folate builds up in

its inactive form, but the active forms are not made as rapidly as

they should be. This can cause the measured folic acid levels to be

high, but the person is not utilizing the folic acid they have very

well. In these cases, depending on the particular genetic

variations (or single nucleotide polymorphisms, SNPs) that the

person has, they might need to take either folinic acid (such as

supplied by www.kirkmangroup.com) or FolaPro (methyl

tetrahydrofolate)(such as supplied by Metagenics). To find out

which genetic variations a person has, Dr. Yasko offers a test panel

at www.testing4health.com. It costs $750 plus shipping, and more if

you order an analysis report with it, so it isn't cheap, but it

characterizes forty different SNPs, and of course, once a person

does it, these genetic characteristics will be valid for the rest of

their life. No doctor's order is necessary to get this test. It

has been very useful in treating the different types of autism

cases, and so far I think it's going to turn out that way in CFS,

too, though I haven't seen many test reports yet.

>

>

> Dr G once described the CFS/autism/even ADHD

> connection this way (as well as I remember it) -

> comparing what happens when the cognitive dysfunction

> hits in an adult ... imagine it hitting in a child who

> hasn't fully developed yet (before 2) - how the

> development can get so messed up and result in the

> problems so familiar with autistic kids. Dysfunction

> hits a little later in development, you may get

> ADD/ADHD/LD, maybe even Aspergers. (That is nowhere

> near as eloquently as he put it but it's a general

> gist...)

***That makes a lot of sense to me. In the terms used by the DAN!

group or Dr. Yasko, I think that a block in the methylation cycle

lowers the methylation capacity, and since that is needed to make

white matter in the developing brain, the brain development is

interrupted when this block occurs. I suspect that the depletion of

glutathione may also interfere with proper brain development.

>

>

***Rich