Colleen -- S Jill Study - Questions - Long

[Guest guest]

Dearest Colleen (and everyone else),

Happy New Year!

I've now had some time to digest your emails, as well as the S Jill et

al materials. Let me ask some clarifying questions first, and then I'll ask

you more about the protocol in a separate email.

The " numbers " you are referring to that are all coming back " out of whack "

-- are these the numbers on glutathione that are included in the Biomarkers

article? Or are they other values on all the various tests you outlined in

your emails? Who said they are coming back the same?

In the Biomarkers article, et al say this:

" Relative to the control children, the children with autism had

significantly lower baseline plasma concentrations of methionine, SAM,

homocysteine, cystathionine, cysteine, and total glutathione and

significantly higher concentrations of SAH, adenosine, and oxidized

glutathione. This metabolic profile is consistent with impaired capacity for

methylation (significantly lower ratio of SAM to SAH) and increased

oxidative stress (significantly lower redox ratio of reduced glutathione to

oxidized glutathione) in children with autism. "

If you're saying that your son and the other non-autistic kids with

neurodevelopmental disorders in the study had the same kinds of low baseline

plasma concentrations of

methionine/SAM/homocysteine/cystathionine/cysteine/total glutathione and

significantly higher concentrations of SAH/adenosine/oxidized glutathione,

then that means that our kids may also have " impaired capacity for

methylation " and " increased oxidative stress. " This would suggest that all

kinds of other non-autistic kids with neurodevelopmental disorders have the

same or similar " metabolic biomarkers " as they say kids with autism have. Is

this what you meant when you wrote: " these numbers were accross the board

with AD/ADHD, autism, CAPD the numbers were not any different among the

children, the only thing different was the childs response to these numbers,

they are all affected differently. " Can you clarify what you know on this?

The numbers were the same? What do you mean by " the child's response to

these numbers " -- that the oxidative stress and inability to methylate

(detoxify metals, etc.) hurts one child's brain (and gut and immune system,

etc) in one way -- i.e., they develop autism -- and it hurts another child's

brain (etc) in another way -- i.e., they develop CAPD or apraxia or DSI or

ADHD and perhaps many more disorders/syndromes/brain damage?

What about response to treatment -- is everyone across all the diagnoses

having similar kinds of responses to the treatment protocol -- that they are

improving in a number of areas, sometimes so much so that they lose their

diagnoses?

Do you know what kinds of neurodevelopmental disorders are included in the

study your son is involved in? Or what kinds of disorders, syndromes, brain

damage, CP, is helped by this protocol you outline beyond just autism? I

guess much of what we could find out would be anecdotal evidence from

doctors who begin treating non-autistic children with various

neurologically-based problems with this protocol and that see the same lab

test values coming back and see various kinds of improvements -- like your

doctor. Who is he? What can you tell us about this?

I want to email Professor and ask her for her protocol, just because

we can't do it with her from here and I need to know how we can get someone

here to do what she's doing. For me, living in the Netherlands where they

don't have DAN! Doctors per se, only doctors who are using various

biomedical interventions for autism, I need something definitive to show to

them that heavy metals (or oxidative stress) and detoxification impairment

really is the problem with Lulu. And, obviously, we need proof that this is

the issues, as we are still working on a hypothetical here. We want to know

if our hunch is right. Thus, I need some initial tests that they can run to

see if Lulu has the " biomarker " about which et al write, or that she

has heavy metal toxicity. Do you have any suggestions for the quickest

tests, rather than asking that they run tests for all nine values listed in

the Biomarkers article (plasma concentrations of methionine, SAM,

homocysteine, cystathionine, cysteine, total glutathione, SAH, adenosine,

oxidized glutathione).

Here's my impression from reading the Biomarkers article:

a) significantly lower ratio of SAM to SAH = impaired capacity for

methylation

significantly lower redox ratio of reduced glutathione to oxidized

glutathione = increased oxidative stress

a + b = metabolic biomarker

I have no idea how the items listed in the Biomarkers article tabs with all

the tests you mentioned, some of which can only be done at ' lab,

others of which can be done at regular labs. I just have no idea what kind

of tests are done to measure these things, and I don't see how all the tests

you mentioned match with all the ones in the Biomarkers article. But maybe

they're not supposed to, maybe the study your son is involved in is more

comprehensive in terms of treatment than the Biomarkers article study, and

in that case you'd need to do all the tests you're talking about in order

to devise a supplement plan that responds to the needs of each child. On

top of all this, I'm no nurse, doctor or scientist and understanding all

this is an uphill battle. I'm hoping that we can get the specialized

laboratory we've located here in the Netherlands to do all this for us.

Otherwise, I want to find out if we can ship the necessary samples to '

laboratory for testing.

I didn't understand the MTHFR connection precisely. Do all or most of the

kids (autistic and non-autistic with neurodevelopmental disorders) show up

heterozygous or homozygous for this MTHFR gene problem? You suggest that

they do, but that many of us without neurodevelopmental disorders have this

also. I looked MTHFR up on PubMed and it came back with all kinds of issues

related to detoxification impairment -- not just cerebral, but cardiac and

so forth. Do you know of any interesting articles on this?

From what you have sent us all thus far regarding the protocol, it doesn't

seem like they are testing for heavy metals, chelating with one of the major

chelators, or supplementing with glutathione itself. It seems like they are

somehow replenishing the glutathione precursors, and this is detoxing the

body slowly. Is this it?

It seems like your son is still on all the nutrients and the diet, but that

he has perhaps lost his diagnoses, or most of the signs of the diagnoses.

Can you confirm this? You said, for instance, that you are currently cutting

back on the methyl B12 (methylcobalamin) to see what his lowest does of need

is. So I wonder if these kids have to stay on these nutrients their entire

lives, or is this something about which they still know very little? Not a

" cure, " but an incredibly effective treatment, I guess, and perhaps one that

induces healing at many levels until the body needs the nutritional and diet

interventions less and less. I have heard, for instance, that over time you

can heal the gut and not need the GFCF diet anymore, if you are treating all

the systems at once, I guess.

I think I need to put together a flow chart on all of this -- it's SOOO

complex -- detoxification pathways, leaky gut and possible yeast or

microbes, auto-immune issues, viral infections, genes, essential nutrients

imbalances and deficiencies. The list is so long and it all gets mixed in my

head at times.

I know that these are big, big, big questions. But what you are suggesting

in your emails sounds big, big, big. I guess that I want to also ask them of

Prof , and I wonder how you think I should do that -- mention your

name, keep you anonymous, what?

Thanks once again, Colleen! You are an amazing resource, clearly have a

generous heart, and I value greatly the internet hand of friendship you have

extended to me and everyone here on the list.

Best,

Theresa (Truax)

Amsterdam, Netherlands