Re: A gentle reminder

[Guest guest]

Sandy,

I have only been on this board since April, so what I am about to write is in

reference to these past 3 months.

If you check the recent archives, the off-topic discussions were all started

when a member posted something negative about a protocol other than . The

debates occur when the information is not factual. They have not started

because someone has posted something negative about or something positive

about another protocol.

The focus of the group could be preserved if people refrained from posting

negative information about other protocols, without first verifying the facts.

That doesn't mean I am in favor of censoring all negative posts. I personally

would welcome reading negative information about other protocols if they are

valid reports ( & I wouldn't debate them, I would learn from them). Narrowing

down the list of safe and effective treatment options for ASD kids is a bonus to

the bank account & I like that!

Just my thoughts,

SandyD <sandy@...> wrote:

A gentle reminder to all our dear listmates - please remember that

this

is the information and support list. Our mission statement is very

specific about why we are here. As I have said before, I understand

that other topics will naturally come up in the course of conversation,

be we are not and will never be Just Another General Autism List. That

is why we must maintain our focus on the reason this list exists.

If you are looking for General Autism information, there are hundreds,

if not thousands of places you can go. Because we choose to focus on

, does not mean that we discount other approaches, it only means

that this is not the place to debate whether or not is a valid

approach vs. other approaches. Believe me, there are PLENTY of other

places where that already happens!

So many have expressed concern that is some kind of " secret, " that

we aren't getting the word out. This list is one important method of

getting that word out - please help us maintain our focus so we can be

effective in that endeavor.

Sincerely,

Sandy

__________________________________________________

[Guest guest]

One thought about where a line is drawn.

Many of us who are doing modified perhaps

Have some info to share about how our kids are faring.

I get a lot everyday just lurking even though we are not pure

protocol,

Would this list be interested in the comments and progress of families

like ours, or do want to stick with the pure discussion of

antivirals, SSRIs, Diet and such? Where woull you like to " draw theline "

Best, Ray

Re: A gentle reminder

Sandy,

I have only been on this board since April, so what I am about to

write is in reference to these past 3 months.

If you check the recent archives, the off-topic discussions were all

started when a member posted something negative about a protocol other

than . The debates occur when the information is not factual. They

have not started because someone has posted something negative about

or something positive about another protocol.

The focus of the group could be preserved if people refrained from

posting negative information about other protocols, without first

verifying the facts. That doesn't mean I am in favor of censoring all

negative posts. I personally would welcome reading negative information

about other protocols if they are valid reports ( & I wouldn't debate

them, I would learn from them). Narrowing down the list of safe and

effective treatment options for ASD kids is a bonus to the bank account

& I like that!

Just my thoughts,

SandyD <sandy@...> wrote:

A gentle reminder to all our dear listmates - please remember

that this

is the information and support list. Our mission statement is very

specific about why we are here. As I have said before, I understand

that other topics will naturally come up in the course of conversation,

be we are not and will never be Just Another General Autism List. That

is why we must maintain our focus on the reason this list exists.

If you are looking for General Autism information, there are hundreds,

if not thousands of places you can go. Because we choose to focus on

, does not mean that we discount other approaches, it only means

that this is not the place to debate whether or not is a valid

approach vs. other approaches. Believe me, there are PLENTY of other

places where that already happens!

So many have expressed concern that is some kind of " secret, " that

we aren't getting the word out. This list is one important method of

getting that word out - please help us maintain our focus so we can be

effective in that endeavor.

Sincerely,

Sandy

__________________________________________________

[Guest guest]

I know we too would only be able to do a modified , as my son's oral

aversions never have permitted us to do any protocol 100%.

I have had numerous people from this list contact me off-list with their

positive experiences modifying to fit their child, and I can't help but

think these type of e-mails would benefit the group as a whole.

-

" Palmer, F " <palmerr@...> wrote:

One thought about where a line is drawn.

Many of us who are doing modified perhaps

Have some info to share about how our kids are faring.

I get a lot everyday just lurking even though we are not pure

protocol,

Would this list be interested in the comments and progress of families

like ours, or do want to stick with the pure discussion of

antivirals, SSRIs, Diet and such? Where woull you like to " draw theline "

Best, Ray

Re: A gentle reminder

Sandy,

I have only been on this board since April, so what I am about to

write is in reference to these past 3 months.

If you check the recent archives, the off-topic discussions were all

started when a member posted something negative about a protocol other

than . The debates occur when the information is not factual. They

have not started because someone has posted something negative about

or something positive about another protocol.

The focus of the group could be preserved if people refrained from

posting negative information about other protocols, without first

verifying the facts. That doesn't mean I am in favor of censoring all

negative posts. I personally would welcome reading negative information

about other protocols if they are valid reports ( & I wouldn't debate

them, I would learn from them). Narrowing down the list of safe and

effective treatment options for ASD kids is a bonus to the bank account

& I like that!

Just my thoughts,

SandyD <sandy@...> wrote:

A gentle reminder to all our dear listmates - please remember

that this

is the information and support list. Our mission statement is very

specific about why we are here. As I have said before, I understand

that other topics will naturally come up in the course of conversation,

be we are not and will never be Just Another General Autism List. That

is why we must maintain our focus on the reason this list exists.

If you are looking for General Autism information, there are hundreds,

if not thousands of places you can go. Because we choose to focus on

, does not mean that we discount other approaches, it only means

that this is not the place to debate whether or not is a valid

approach vs. other approaches. Believe me, there are PLENTY of other

places where that already happens!

So many have expressed concern that is some kind of " secret, " that

we aren't getting the word out. This list is one important method of

getting that word out - please help us maintain our focus so we can be

effective in that endeavor.

Sincerely,

Sandy

__________________________________________________

[Guest guest]

I am very interested in modified information.

IMO, I'm interested in anything related to healing my son's body from an

immunological standpoint (meds, diet, supplements, lifestyle, etc.). Am I in

the right place?

Kristy

Re: A gentle reminder

Sandy,

I have only been on this board since April, so what I am about to

write is in reference to these past 3 months.

If you check the recent archives, the off-topic discussions were all

started when a member posted something negative about a protocol other

than . The debates occur when the information is not factual. They

have not started because someone has posted something negative about

or something positive about another protocol.

The focus of the group could be preserved if people refrained from

posting negative information about other protocols, without first

verifying the facts. That doesn't mean I am in favor of censoring all

negative posts. I personally would welcome reading negative information

about other protocols if they are valid reports ( & I wouldn't debate

them, I would learn from them). Narrowing down the list of safe and

effective treatment options for ASD kids is a bonus to the bank account

& I like that!

Just my thoughts,

SandyD <sandy@...> wrote:

A gentle reminder to all our dear listmates - please remember

that this

is the information and support list. Our mission statement is very

specific about why we are here. As I have said before, I understand

that other topics will naturally come up in the course of conversation,

be we are not and will never be Just Another General Autism List. That

is why we must maintain our focus on the reason this list exists.

If you are looking for General Autism information, there are hundreds,

if not thousands of places you can go. Because we choose to focus on

, does not mean that we discount other approaches, it only means

that this is not the place to debate whether or not is a valid

approach vs. other approaches. Believe me, there are PLENTY of other

places where that already happens!

So many have expressed concern that is some kind of " secret, " that

we aren't getting the word out. This list is one important method of

getting that word out - please help us maintain our focus so we can be

effective in that endeavor.

Sincerely,

Sandy

__________________________________________________

[Guest guest]

In a message dated 6/8/2006 5:58:38 P.M. Central Standard Time,

RobRose@... writes:

I know we too would only be able to do a modified , as my son's oral

aversions never have permitted us to do any protocol 100%.

,

We have been there with the oral aversions! My son had MAJOR problems with

textures, visual stimuli (he used to puke from just LOOKING at certain

things. One glance at anything tiny like nerds candy, peas, etc...heaven

forbid a

glance in the dog's dish!...meant he was hurling.). We are one of the long

term families on this list. My son was 5 when we started the protocol

and I can say that things are much better now, but it took time. He went from

eating literally 5 foods (all bad for him) to being the best eater in our

house (age 11). I would say it probably took two years before I could really

say he was a good eater. If there is anything specific you are trying to

overcome, I would be happy to share our experience. Self-preservation has

taught

me many tricks to get meds and vitamins in and clean up the diet :-).

Sharon

[Guest guest]

Sharon,

I'm very interested in hearing more on your experience.

My twins were born at 26 weeks. My daughter (NT) had SEVERE feeding issues

for their first 30 months (mostly due to reflux, then gastroenteritis that a

food elimination diet helped 'cure' - she now can and does eat anything -

GREATEST accomplishment of my life so far, other than giving birth).

My son (ASD) was the EASIEST to feed baby (even the NICU commented they had

NEVER seen a micropreemie with absolutely no feeding issues) and toddler. He

ate everything and loved it. I'm not sure when he became EXTREMELY picky and

self-limiting (because I was consumed with his twin sis), but he clearly

won't touch certain foods and textures with a 20 foot pole. He even gagged

one time when I touched his hand with a piece of watermelon. What happened??

And, how do we 'fix' it? I don't have much fight in me for feeding issues at

this point, (though I'm trying to psyche myself up). At least he eats, and

what he eats/drinks is actually pretty healthy, and gains weight...that was

*not* the case with his sister.

Kristy

Re: A gentle reminder

In a message dated 6/8/2006 5:58:38 P.M. Central Standard Time,

RobRose@... writes:

I know we too would only be able to do a modified , as my son's oral

aversions never have permitted us to do any protocol 100%.

,

We have been there with the oral aversions! My son had MAJOR problems with

textures, visual stimuli (he used to puke from just LOOKING at certain

things. One glance at anything tiny like nerds candy, peas, etc...heaven

forbid a

glance in the dog's dish!...meant he was hurling.). We are one of the long

term families on this list. My son was 5 when we started the protocol

and I can say that things are much better now, but it took time. He went

from

eating literally 5 foods (all bad for him) to being the best eater in our

house (age 11). I would say it probably took two years before I could

really

say he was a good eater. If there is anything specific you are trying to

overcome, I would be happy to share our experience. Self-preservation has

taught

me many tricks to get meds and vitamins in and clean up the diet :-).

Sharon

[Guest guest]

We have been doing the protocal for 7yrs. I was told in 2 yrs my son would be

cured.

I WAS TOLD I WILL CURE YOUR SON IN 2 YRS.....IT DID NOT HAPPEN

That never happened....it never will....he will always be severely affected by

AUTISM.

We have taken every med, dietary intervention, therapy under the protocal,

blood test,, brain scan....he is a severely disabled young man, left non-verbal,

and will never, ever be cured.

I do not say that with bitterness. I have heard a million times " we are really

close " but there is as of yet any pharmaceutical company on board. I ignore the

" WE ARE REALLY CLOSE STATEMENTS "

For right now, this is as good as it gets. The helps, yes, his life would

be alot worse....but please don't preach you will cure these kids....it hasn't

happened yet, and to say so only gives hope in miracles, that really are not

ready to happen.

For ADHD/Nids kids, is this a cure....yes, but for severely affected

Autism/Nids...no, it helps tremendously but not a cure. I hope that statement.

Your son will be cured in 2yrs is no longer used. It broke my heart....I should

never have been told that.

If parents find other treatments that are helpful, and are not harmful

good...leave them alone...and let them share information. I don't think anyone

has the right to beat people up over therapies that might be helpful.

Cat

<><

SandyD <sandy@...> wrote:

A gentle reminder to all our dear listmates - please remember that

this

is the information and support list. Our mission statement is very

specific about why we are here. As I have said before, I understand

that other topics will naturally come up in the course of conversation,

be we are not and will never be Just Another General Autism List. That

is why we must maintain our focus on the reason this list exists.

If you are looking for General Autism information, there are hundreds,

if not thousands of places you can go. Because we choose to focus on

, does not mean that we discount other approaches, it only means

that this is not the place to debate whether or not is a valid

approach vs. other approaches. Believe me, there are PLENTY of other

places where that already happens!

So many have expressed concern that is some kind of " secret, " that

we aren't getting the word out. This list is one important method of

getting that word out - please help us maintain our focus so we can be

effective in that endeavor.

Sincerely,

Sandy

__________________________________________________

[Guest guest]

I second this emotion.

I also got tired of hearing this " we are close " to the new mystery drug.

R

Re: A gentle reminder

We have been doing the protocal for 7yrs. I was told in 2 yrs my son would be

cured.

I WAS TOLD I WILL CURE YOUR SON IN 2 YRS.....IT DID NOT HAPPEN

That never happened....it never will....he will always be severely affected by

AUTISM.

We have taken every med, dietary intervention, therapy under the protocal,

blood test,, brain scan....he is a severely disabled young man, left non-verbal,

and will never, ever be cured.

I do not say that with bitterness. I have heard a million times " we are really

close " but there is as of yet any pharmaceutical company on board. I ignore the

" WE ARE REALLY CLOSE STATEMENTS "

For right now, this is as good as it gets. The helps, yes, his life would

be alot worse....but please don't preach you will cure these kids....it hasn't

happened yet, and to say so only gives hope in miracles, that really are not

ready to happen.

For ADHD/Nids kids, is this a cure....yes, but for severely affected

Autism/Nids...no, it helps tremendously but not a cure. I hope that statement.

Your son will be cured in 2yrs is no longer used. It broke my heart....I should

never have been told that.

If parents find other treatments that are helpful, and are not harmful

good...leave them alone...and let them share information. I don't think anyone

has the right to beat people up over therapies that might be helpful.

Cat

<><

SandyD <sandy@...> wrote:

A gentle reminder to all our dear listmates - please remember that

this

is the information and support list. Our mission statement is very

specific about why we are here. As I have said before, I understand

that other topics will naturally come up in the course of conversation,

be we are not and will never be Just Another General Autism List. That

is why we must maintain our focus on the reason this list exists.

If you are looking for General Autism information, there are hundreds,

if not thousands of places you can go. Because we choose to focus on

, does not mean that we discount other approaches, it only means

that this is not the place to debate whether or not is a valid

approach vs. other approaches. Believe me, there are PLENTY of other

places where that already happens!

So many have expressed concern that is some kind of " secret, " that

we aren't getting the word out. This list is one important method of

getting that word out - please help us maintain our focus so we can be

effective in that endeavor.

Sincerely,

Sandy

__________________________________________________

[Guest guest]

I don't post much, but I too have grown weary of hearing how supposedly close we

are to the " mystery drug. " I believe there are posts dating back at least to

1999 stating how close we are to the immune modulators.

What I don't understand is all the secrecy...do these immune modulators actually

exist at this point in time and they just need to be tested, or is it a theory

which will hopefully be converted into an effective med someday? If it exists,

does it have a name? If it has a name, why can't we at least be told what the

name is?

Not meaning to sound negative here...just a tired old mom wanting more info....

Heidi

--------- Re: A gentle reminder

We have been doing the protocal for 7yrs. I was told in 2 yrs my son would be

cured.

I WAS TOLD I WILL CURE YOUR SON IN 2 YRS.....IT DID NOT HAPPEN

That never happened....it never will....he will always be severely affected by

AUTISM.

We have taken every med, dietary intervention, therapy under the protocal, blood

test,, brain scan....he is a severely disabled young man, left non-verbal, and

will never, ever be cured.

I do not say that with bitterness. I have heard a million times " we are really

close " but there is as of yet any pharmaceutical company on board. I ignore the

" WE ARE REALLY CLOSE STATEMENTS "

For right now, this is as good as it gets. The helps, yes, his life would

be alot worse....but please don't preach you will cure these kids....it hasn't

happened yet, and to say so only gives hope in miracles, that really are not

ready to happen.

For ADHD/Nids kids, is this a cure....yes, but for severely affected

Autism/Nids...no, it helps tremendously but not a cure. I hope that statement.

Your son will be cured in 2yrs is no longer used. It broke my heart....I should

never have been told that.

If parents find other treatments that are helpful, and are not harmful

good...leave them alone...and let them share information. I don't think anyone

has the right to beat people up over therapies that might be helpful.

Cat

<><

SandyD <sandy@...> wrote:

A gentle reminder to all our dear listmates - please remember that this

is the information and support list. Our mission statement is very

specific about why we are here. As I have said before, I understand

that other topics will naturally come up in the course of conversation,

be we are not and will never be Just Another General Autism List. That

is why we must maintain our focus on the reason this list exists.

If you are looking for General Autism information, there are hundreds,

if not thousands of places you can go. Because we choose to focus on

, does not mean that we discount other approaches, it only means

that this is not the place to debate whether or not is a valid

approach vs. other approaches. Believe me, there are PLENTY of other

places where that already happens!

So many have expressed concern that is some kind of " secret, " that

we aren't getting the word out. This list is one important method of

getting that word out - please help us maintain our focus so we can be

effective in that endeavor.

Sincerely,

Sandy

__________________________________________________

[Guest guest]

Immune modulators exist, they are used for a variety of illnesses like

RH, IBD, etc...

On Jun 9, 2006, at 4:32 PM, theshabbysheep@... wrote:

> I don't post much, but I too have grown weary of hearing how

> supposedly close we are to the " mystery drug. " I believe there are

> posts dating back at least to 1999 stating how close we are to the

> immune modulators.

>

> What I don't understand is all the secrecy...do these immune

> modulators actually exist at this point in time and they just need to

> be tested, or is it a theory which will hopefully be converted into an

> effective med someday? If it exists, does it have a name? If it has

> a name, why can't we at least be told what the name is?

>

> Not meaning to sound negative here...just a tired old mom wanting more

> info....

> Heidi

>

[Guest guest]

Hi -

I remember Dr G once said on a chat that the immune

modulators exist and are sitting on the shelves.

Whether this means on the market or not, I don't know

- didn't ask at the time. He said they needed to be

studied, though. I was under the impression that some

are being tested in a study w/CFS adults, but do not

know this for sure.

They would have a name, but we are not privy to that

info - couldn't tell you why other than to speculate

that it wouldn't be right to release a name without

any backing that this would be helpful. I don't know

if it's (the name) released in the CFS world or not

either - that is, if my memory and understanding even

serve me correctly in the first place. I hate to even

say it in case I'm incorrect.

HTH-

--- theshabbysheep@... wrote:

> What I don't understand is all the secrecy...do

> these immune modulators actually exist at this point

> in time and they just need to be tested, or is it a

> theory which will hopefully be converted into an

> effective med someday? If it exists, does it have a

> name? If it has a name, why can't we at least be

> told what the name is?

>

> Not meaning to sound negative here...just a tired

> old mom wanting more info....

> Heidi

>

__________________________________________________

[Guest guest]

Immune modulators are being used daily by a

huge number of people with various autoimmune

diseases. Most of these are not appropriate for

treating autism (there are possible side effects to

long term usage). Dr. McCandless is studying

LDN which supposedly has no side effects

(or at least severe long-term side effects).

On Jun 9, 2006, at 7:03 PM, wrote:

> Hi -

>

> I remember Dr G once said on a chat that the immune

> modulators exist and are sitting on the shelves.

> Whether this means on the market or not, I don't know

> - didn't ask at the time. He said they needed to be

> studied, though. I was under the impression that some

> are being tested in a study w/CFS adults, but do not

> know this for sure.

>

> They would have a name, but we are not privy to that

> info - couldn't tell you why other than to speculate

> that it wouldn't be right to release a name without

> any backing that this would be helpful. I don't know

> if it's (the name) released in the CFS world or not

> either - that is, if my memory and understanding even

> serve me correctly in the first place. I hate to even

> say it in case I'm incorrect.

>

> HTH-

>

>

> --- theshabbysheep@... wrote:

>> What I don't understand is all the secrecy...do

>> these immune modulators actually exist at this point

>> in time and they just need to be tested, or is it a

>> theory which will hopefully be converted into an

>> effective med someday? If it exists, does it have a

>> name? If it has a name, why can't we at least be

>> told what the name is?

>>

>> Not meaning to sound negative here...just a tired

>> old mom wanting more info....

>> Heidi

>>

>

> __________________________________________________

>

[Guest guest]

I seem to remember that the immune modulators are actually in current

use with adults, but still need to be studied/approved for children,

and that getting a study done is the " linchpin " that is currently

holding them up for our kids. About a month ago, I saw an article

about a new drug, now being used with AIDS patients, that is taken

*once a day* in place of the multi-drug " cocktail " that has been the

standard HIV treatment for the last decade. I wondered at the time if

this was an immune modulator.

Like , I don't know the exact particulars, drug names, players,

etc., but I think that's pretty much the gist of it. Perhaps someone

else has more specific info.

Donna

> > What I don't understand is all the secrecy...do

> > these immune modulators actually exist at this point

> > in time and they just need to be tested, or is it a

> > theory which will hopefully be converted into an

> > effective med someday? If it exists, does it have a

> > name? If it has a name, why can't we at least be

> > told what the name is?

> >

> > Not meaning to sound negative here...just a tired

> > old mom wanting more info....

> > Heidi

> >

>

> __________________________________________________

>

[Guest guest]

Thanks Sandy, I still don't understand why those that do not believe in

continue to preach on this list. is based on NeuroSpect and Science

Nobody makes a parent do anything to their child they don not want. We are

way more concerned that other " list's' are using Valtrex at different doses.

If you want to be frightened do a search for Valtrex resistance. Since

Valtrex can only work on a herpes related virus I am so afraid we are going

to create a resistance and then what? People just don't understand....

Chelation has been done for decades where are the well children? Any

approach has a 30% placebo rate

People are here for because it has a proven success rate. You do not

have to agree but unless you have tried the protocol and followed it to the

letter you do not have all the information. Equally it amazes me how many

say they are doing and are not patients of Dr. Goldberg's.... Where

Brain Matters inc is working with Dr. Goldberg to set up centers and doctors

with certification sadly Dr. G is the only real provider at this

point....Many have tried to follow his approach but have not trained under

him. This is rapidly about to change with Brainmatters help. So if you want

to discuss other issues do so but Please not here! E-mail each other

privately or on another list that discusses these issues. This is not to be

mean but as the NIH is looking at us to develop a new drug these off topics

really jeopardizes our position that this is a real disease process. So

have fun attacking me but in the end all the published science you would

like will be there and it won't include megavitamins or chelation.

Elyse

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date: 6/9/2006

[Guest guest]

In a message dated 6/10/2006 3:50:26 PM Central Standard Time,

elyse-g@... writes:

<<If you want to be frightened do a search for Valtrex resistance. Since

Valtrex can only work on a herpes related virus I am so afraid we are going

to create a resistance and then what?>>

Can you elaborate a bit on this? Are you concerned that some people are

using Valtrex to treat other viruses which may create resistance in the future

or

at too low a dose or too high a dose, or what?

<<Brain Matters inc is working with Dr. Goldberg to set up centers and doctors

with certification >>

This is exciting. Can you share the estimated timing for this and where the

other centers will be?

Gaylen

[Guest guest]

Gaylen,

You can check it out on the Brain Matters website...

http://www.brainmattersinc.com/

It lists existing centers in Denver and L.A. (Torrance) and a new center in

Seattle, WA opening on September 15th, 2006.

Caroline

[Guest guest]

That will happen anyway correct? Whether or not people misuse an anti-viral,

drug resistance is going to happen, but it will happen faster if the drug is

overprescribed. That's the success/failure of HIV treatment. Better drugs are

always beaten out by better bugs.

-

Googahly@... wrote:

In a message dated 6/10/2006 3:50:26 PM Central Standard Time,

elyse-g@... writes:

<<If you want to be frightened do a search for Valtrex resistance. Since

Valtrex can only work on a herpes related virus I am so afraid we are going

to create a resistance and then what?>>

Can you elaborate a bit on this? Are you concerned that some people are

using Valtrex to treat other viruses which may create resistance in the future

or

at too low a dose or too high a dose, or what?

<<Brain Matters inc is working with Dr. Goldberg to set up centers and doctors

with certification >>

This is exciting. Can you share the estimated timing for this and where the

other centers will be?

Gaylen

[Guest guest]

In a message dated 6/12/2006 10:52:52 PM Central Standard Time,

sfglover@... writes:

<<You can check it out on the Brain Matters website...

http://www.brainmattersinc.com/

It lists existing centers in Denver and L.A. (Torrance) and a new center in

Seattle, WA opening on September 15th, 2006.>>

I read through the site and didn't see anything about clinics in

conjunction with these locations. Is it in the works to link a clinic with

them

in the future?

Gaylen

[Guest guest]

, What Elyse was referring to is that some children may NOT need valtrex

and to give it unecessarily could be devastating on their immune systems,

which is likely already compromised.

Valtrex also needs to be prescribed very carefully, with dosaging, etc. It

is a worry for Dr. Goldberg because from what I am understanding you yourself

say all the time: what works for one kid may not for another. And from what I

am seeing out there with the DAN groups every kid is being prescribed valtrex.

Think that over.

Michele Cerruto.

Mauldin, SC (a suburb of Greenville)

[Guest guest]

Gaylen,

I can't remember exactly what I've heard on that point, but that is sort of

my impression. It would seem logical to do so. I doubt anything would be

on the website until it was near fruition.

Caroline

> From: <Googahly@...>

> Reply-< >

> Date: Mon, 12 Jun 2006 23:58:15 -0400 (EDT)

> < >

> Subject: Re: Re: A gentle reminder

>

> It lists existing centers in Denver and L.A. (Torrance) and a new center in

> Seattle, WA opening on September 15th, 2006.>>

>

> I read through the site and didn't see anything about clinics in

> conjunction with these locations. Is it in the works to link a clinic

> with them

> in the future?

> Gaylen

[Guest guest]

Michele

Most that are being prescribed Valtrex have high herpes titers. If you

read Dr McCandless book Children with Starving brains, this is what

she recommends. That is the only way a DAN will prescribe valtrex

(that I am aware of...Dr Kartzinel and Dr Sears here in my areas).

Only one parent I know took it upon himself to give his son valtrex

and his son did NOT have high herpes titers. However his son did

recover and so who knows???

Kristie

[Guest guest]

Someone explained that here once (for one of their children). Didn't the titres

shoot up after the med was given?

-

aaron2kristie <aaron2kristie@...> wrote:

Michele

Most that are being prescribed Valtrex have high herpes titers. If you

read Dr McCandless book Children with Starving brains, this is what

she recommends. That is the only way a DAN will prescribe valtrex

(that I am aware of...Dr Kartzinel and Dr Sears here in my areas).

Only one parent I know took it upon himself to give his son valtrex

and his son did NOT have high herpes titers. However his son did

recover and so who knows???

Kristie

__________________________________________________

[Guest guest]

Michele:

If a child doesn't have titers, what markers would suggest a trial of it

anyway? Just curious.

Re: Re: A gentle reminder

, What Elyse was referring to is that some children may NOT need

valtrex

and to give it unecessarily could be devastating on their immune

systems,

which is likely already compromised.

Valtrex also needs to be prescribed very carefully, with dosaging, etc.

It

is a worry for Dr. Goldberg because from what I am understanding you

yourself

say all the time: what works for one kid may not for another. And from

what I

am seeing out there with the DAN groups every kid is being prescribed

valtrex.

Think that over.

Michele Cerruto.

Mauldin, SC (a suburb of Greenville)

[Guest guest]

Hi Larua-

Other signs of chronic viral infection could be (in

combo sometimes?) things like CBCs showing chronic

shifts, immune panels, low (or high?) IgM, low NK

cells (or high?), elevated liver profile, iron def.

anemia (over long periods), etc...

--- " K. Fischer " <elfischer@...> wrote:

> Michele:

>

> If a child doesn't have titers, what markers would

> suggest a trial of it

> anyway? Just curious.

>

>

>

> Re: Re: A gentle reminder

>

> , What Elyse was referring to is that some

> children may NOT need

> valtrex

> and to give it unecessarily could be devastating on

> their immune

> systems,

> which is likely already compromised.

>

> Valtrex also needs to be prescribed very carefully,

> with dosaging, etc.

> It

> is a worry for Dr. Goldberg because from what I am

> understanding you

> yourself

> say all the time: what works for one kid may not for

> another. And from

> what I

> am seeing out there with the DAN groups every kid is

> being prescribed

> valtrex.

>

> Think that over.

>

> Michele Cerruto.

> Mauldin, SC (a suburb of Greenville)

>

> [Non-text portions of this message have been

> removed]

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Well from what I remember Dr. Goldberg's explanation on this was that

if the child had no markers in the beginning of protocol, didn't mean as

time progressed that this would be the same story. Markers become apparent in

time; on some of the children.

Again, anyone else remembering further on this, please jump in.

Michele Cerruto.