Re: Re: CFS and DAN! treatments for autism/to Jill

[Guest guest]

Dr Amy treated me this last October . . . and did not inform me of problems with

my methalation issues. She gave me a 3 page list of supplements and meds to take

, but never said my body was not ready . . . in fact she told me my liver could

handle it. I could not handle them when I tried. I tried contacting her

concerning questions I had regarding methalation but she never wrote or called

me back. I was very disappointed and I truly felt she was inaccurate in what she

was doing in regards to my treatment. I don't know if she understands the Dan!

program idea. I am not comfortable discussing the details of what she

recommended to me to the group because I do not believe she was accurate in her

assessment.

I am still angry over this and I really believe more mercury and bugs were

stirred up and affected my brain and gut more because my body was not ready for

all the detox and killing of microbes.

Please be careful and make sure she(or any other doc) knows you want to be

sure your methalation and sulfation pathways are open so you can detox. I

believe I am not the only one who has had a similar this experience with their

office.

Sue T

lgrasso_hawaii <lgrasso_hawaii@...> wrote:

hi jill:

dr klinghardt and his former asst dr. amy derksin both treat

autistic and lyme patients...maybe you can talk with them. Also Dr.

Patel in Los Altos, CA treats lyme and autistic patients.

This is exciting!!!!

> > > >

> > > > Hi, all.

> > > >

> > > > I am posting the following message to several CFS internet

> > lists,

> > > > based on the experiences that many of you have shared with

me.

> > > > Thank you, and I hope this really flies:

> > > >

> > > >

> > > > I have been researching chronic fatigue syndrome for over

eight

> > > > years. As regular readers may recall, I had developed a

> > hypothesis

> > > > for the pathogenesis of chronic fatigue syndrome that

> > prominently

> > > > featured the depletion of glutathione, and I presented a

poster

> > > > paper on it at the AACFS (now the IACFS) meeting in October,

> > 2004,

> > > > in Madison, Wisconsin. This paper can be found at

> > > >

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

> > > >

> > > > Anecdotal experience of people in the

internet

> > > > group and others who took my hypothesis seriously and acted

upon

> > it

> > > > suggested that while some were able to raise their

glutathione

> > > > levels by various means and experienced benefit from doing

so,

> > > > others were not able to do so. At the time of writing my

poster

> > > > paper, I was aware of this, and I acknowledged in the

> > conclusions of

> > > > the paper that there appeared to be things that were

blocking

> > the

> > > > raising of glutathione in CFS. At that time, I was not sure

> > > > specifically what they were. I also knew that there was

> > evidence

> > > > for a genetic predisposition in CFS, but I did not know the

> > details

> > > > of the genetic variations involved.

> > > >

> > > > Since then, I became aware of the work of S. Jill et

al.

> > in

> > > > autism (Am J Clin Nutr. 2004 Dec;80(6):1611-7). They found

that

> > > > glutathione was also depleted in autistic children, that

this

> > > > resulted from a partial block in the methylation (also

called

> > > > methionine) cycle, that this partial block resulted in part

from

> > > > genetic variations in the genes for certain enzymes and

proteins

> > > > associated with the sulfur metabolism (I don't think the

genetic

> > > > part is published yet), and that it interfered with the

> > conversion

> > > > of methionine to cysteine, which is the rate-limiting amino

acid

> > for

> > > > the synthesis of glutathione. They found that by using

certain

> > > > supplements they could lift the block in the methylation

cycle

> > and

> > > > restore the glutathione level.

> > > >

> > > > In response to learning of this work, I became very

interested

> > in

> > > > possible parallels between chronic fatigue syndrome and

autism.

> > I

> > > > went on to attend the conference of the Defeat Autism Now!

> > project

> > > > in Long Beach, California in October, 2005. As a result of

this

> > > > experience, I became convinced that the genetic

predisposition

> > found

> > > > in autism must be the same or similar to that in a major

subset

> > of

> > > > chronic fatigue syndrome, and that the resulting biochemical

> > > > abnormalities were also the same or similar. As far as I

know,

> > the

> > > > genetic variations in people with CFS have not yet been

studied

> > in

> > > > detail or published, but I am optimistic that this will

occur

> > soon,

> > > > because of the rapid advances in the technology for doing

so,

> > and

> > > > the current active interest of at least three groups in the

U.S.

> > and

> > > > the U.K. in genomic aspects of CFS.

> > > >

> > > > There are obviously also major differences between chronic

> > fatigue

> > > > syndrome and autism. I believe that these result primarily

from

> > the

> > > > different ages of onset. Autistic children experience onset

> > early

> > > > in life, before their brains are fully developed. I believe

> > that

> > > > this gives rise to the very different brain-related symptoms

> > seen in

> > > > autistic children from those seen in adults with CFS.

However,

> > > > there are many similarities in the symptomatology and the

> > > > biochemistry of these two disorders as well, including

oxidative

> > > > stress, buildup of toxins, immune response shift to Th2, and

gut

> > > > problems, for examples.

> > > >

> > > > The triggering factors for autism and chronic fatigue

syndrome

> > are

> > > > also largely different. There appears to be substantial

> > evidence

> > > > now that vaccinations (containing either a mercury-based

> > > > preservative or live viruses, many given at the same time)

were

> > > > responsible for triggering many of the cases of autism in

> > > > genetically-susceptible children. In CFS, a variety of

> > triggering

> > > > factors (physical, chemical, biological, or

> > psychological/emotional)

> > > > have been shown to be involved in various cases. All of

these

> > > > factors have in common the tendency to deplete glutathione.

It

> > > > appears that once glutathione drops sufficiently in a

> > genetically

> > > > susceptible person, the methylation cycle goes down, and the

> > result

> > > > is a depletion of several important metabolites in the

sulfur

> > > > metabolism, including S-adenosylmethionine (SAMe), cysteine,

> > > > glutathione, taurine and sulfate. The depletion in these

> > > > metabolites causes an avalanche of pathogenesis, since they

all

> > have

> > > > very important functions in the body, and I think that much

of

> > this

> > > > pathogenesis is common between autism and CFS. In autism, I

> > think

> > > > the loss of methylation capacity because of the drop in SAMe

is

> > > > responsible for much of the interference with normal brain

> > > > development.

> > > >

> > > > I think that the reason why the people who have developed

CFS as

> > > > adults did not develop autism as children (even though I

suspect

> > > > that they have the same or similar genetic predisposition)

is

> > that

> > > > when they were children, not as many vaccinations were

> > required.

> > > > The schedule of vaccinations required for children in the

U.S.

> > has

> > > > grown substantially in the past two or three decades, as has

the

> > > > incidence of autism. I think this is also true in the U.K.

> > > >

> > > > My main message is that a great deal has already been worked

out

> > in

> > > > autism by the people in the Defeat Autism Now! project, and

that

> > I

> > > > believe that the CFS community would benefit greatly by

looking

> > > > carefully at what they have already done. They have found

> > > > supplements that will compensate for the genetic variations

and

> > > > correct these biochemical irregularities. They are also

> > detoxing

> > > > heavy metals. The results in many autistic children have

been

> > > > astounding.

> > > >

> > > > So I want to encourage everyone who has an interest in CFS

to

> > look

> > > > at the results of the DAN! project in autism. You can view

> > videos

> > > > of the talks given at the latest two DAN! conferences on the

> > > > internet at no cost (unless you are paying for the internet

> > time!).

> > > > Go to this site:

> > > >

> > > > http://www.danwebcast.com

> > > >

> > > > You can choose either the later Long Beach conference or the

> > earlier

> > > > Boston conference. They cover much of the same material,

but

> > both

> > > > are worthwhile to watch. If you want to see a good

explanation

> > of

> > > > the methylation cycle research, go to the Boston meeting

first,

> > so

> > > > you will be able to view the talk by Jill , who did not

> > attend

> > > > the Long Beach meeting.

> > > >

> > > > After selecting one of the conferences, go to the lower left

and

> > > > register. This is free. They will email a password to you

> > right

> > > > away, and then you can choose a talk to watch.

> > > >

> > > > Beyond this, I also want to recommend a book. This is a new

> > book

> > > > (Sept. 2005). It is by Jon Pangborn, Ph.D. and Sydney

Baker,

> > M.D.,

> > > > a biochemist and an autism clinician, respectively. It is

> > available

> > > > on Amazon for people within the U.S. For people outside the

> > U.S.,

> > > > it can be obtained from the following website by means of

PayPal:

> > > >

> > > > http://www.autismresearchinstitute.com

> > > >

> > > > The cost for the book is $30 U.S.

> > > >

> > > > This is an excellent book. It is a reference book, full of

good

> > > > information and good science, explained clearly. This book

> > deals

> > > > very practically with developing a treatment program for an

> > > > individual child. I think that most of it will turn out to

> > apply

> > > > directly to adults with CFS as well.

> > > >

> > > > Although I have been suggesting consideration of the DAN!

> > treatments

> > > > to people with CFS for only about two months, and it is too

soon

> > to

> > > > draw conclusions, early feedback is very encouraging. While

I

> > am

> > > > going out on a limb in announcing this on Co-Cure now, I

don't

> > want

> > > > to wait any longer, because I think this could help a lot of

> > > > people. Of course, we should all keep in mind that with the

> > current

> > > > case definition of CFS we have a very heterogeneous

population,

> > and

> > > > the DAN! treatments may not help all PWCs, but I am

convinced

> > that

> > > > they will help a substantial subset. So I want to encourage

you

> > to

> > > > look into this in the strongest way I can. It could be the

> > answer

> > > > for many of you.

> > > >

> > > > Rich Van Konynenburg, Ph.D.

> > > >

> > >

> >

>

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.