Re: New to group - How does differ from DAN?

[Guest guest]

Hi there, when I was reading this email I couldn't help but wonder

if your son possibly has an underlying mitochondrial

dysfunction...Have you asked your doctor about that??

-

>

> Hi all - I just found this group and Dr. Goldberg's

protocol. I

> looked through his presentation on the nids.net website and it

makes a

> lot of sense to me. My son is 5 and has an abnormal MRI showing

excess

> T1 flairs on the frontal lobe. He is ASD and still non-verbal.

He has

> low energy and is constantly lying down on his back on the floor

or

> sofa, which has me thinking he has some form of chronic fatigue

> syndrome, but of course, my idea was dismissed by our pediatrician

and

> even Dr. Sudhir Gupta (of IVIG fame).

>

> We've been on the DAN (Defeat Autism Now) protocol about 1.5 years

> now. We're also using Acyclovir to treat for the herpes virus and

> Diflucan for yeast. He's made slow progress but we would really

love

> some expressive language.

>

> So how does the protocol differ from DAN? Does focus

more on

> treating viruses?

>

> I'm anxious to call Dr. Goldberg's office. In the meantime, can

> someone tell me more info about the protocol and whether Dr.

> Goldberg accepts insurance? If not, what are his rates?

>

> Thanks!

>

[Guest guest]

For one thing, acyclovir and other antivirals tend to be way under-dosed by

DAN.  Acyclovir is usually used last and has to be given 5x a day to be

effective enough.  How is your child being dosed?

The difference in DAN and is pretty deep, but it starts with the basic

paradigm.  is based on the findings of 25+ years in Chronic Fatigue

Syndrome and focuses on the immune dysfunction, targeting that, reducing

triggers, and in our experience, the other abnormalities that DAN attempts to

fix resolve on their own.  It's so extensive the difference in paradigms that  I

can't go into it all right now.  I'll try to forward some stuff I wrote up for

someone else to you that may be indirect but may answer a few of your

questions...

HTH

________________________________

From: lvtoeat2 <lvtoeat2@...>

Sent: Wednesday, November 5, 2008 9:18:16 PM

Subject: New to group - How does differ from DAN?

Hi all - I just found this group and Dr. Goldberg's protocol. I

looked through his presentation on the nids.net website and it makes a

lot of sense to me. My son is 5 and has an abnormal MRI showing excess

T1 flairs on the frontal lobe. He is ASD and still non-verbal. He has

low energy and is constantly lying down on his back on the floor or

sofa, which has me thinking he has some form of chronic fatigue

syndrome, but of course, my idea was dismissed by our pediatrician and

even Dr. Sudhir Gupta (of IVIG fame).

We've been on the DAN (Defeat Autism Now) protocol about 1.5 years

now. We're also using Acyclovir to treat for the herpes virus and

Diflucan for yeast. He's made slow progress but we would really love

some expressive language.

So how does the protocol differ from DAN? Does focus more on

treating viruses?

I'm anxious to call Dr. Goldberg's office. In the meantime, can

someone tell me more info about the protocol and whether Dr.

Goldberg accepts insurance? If not, what are his rates?

Thanks!

[Guest guest]

Yes, Dr. G does take insurance. You may want to call the office and get the

latest insurance he takes. If you have BCBS, he accepts it as long as billing

goes through Blue Shield. You may want to check your provider directory as well.

Good luck,

Robyn

> From: <thecolemans4@...>

> Subject: Re: New to group - How does differ from DAN?

>

> Date: Tuesday, November 11, 2008, 9:19 AM

> For one thing, acyclovir and other antivirals tend to be way

> under-dosed by DAN.  Acyclovir is usually used last and has

> to be given 5x a day to be effective enough.  How is your

> child being dosed?

> The difference in DAN and is pretty deep, but it

> starts with the basic paradigm.  is based on the

> findings of 25+ years in Chronic Fatigue Syndrome and

> focuses on the immune dysfunction, targeting that, reducing

> triggers, and in our experience, the other abnormalities

> that DAN attempts to fix resolve on their own.  It's so

> extensive the difference in paradigms that  I can't go

> into it all right now.  I'll try to forward some stuff

> I wrote up for someone else to you that may be indirect but

> may answer a few of your questions...

> HTH

>

>

>

>

>

> ________________________________

> From: lvtoeat2 <lvtoeat2@...>

>

> Sent: Wednesday, November 5, 2008 9:18:16 PM

> Subject: New to group - How does differ from

> DAN?

>

>

> Hi all - I just found this group and Dr. Goldberg's

> protocol. I

> looked through his presentation on the nids.net website and

> it makes a

> lot of sense to me. My son is 5 and has an abnormal MRI

> showing excess

> T1 flairs on the frontal lobe. He is ASD and still

> non-verbal. He has

> low energy and is constantly lying down on his back on the

> floor or

> sofa, which has me thinking he has some form of chronic

> fatigue

> syndrome, but of course, my idea was dismissed by our

> pediatrician and

> even Dr. Sudhir Gupta (of IVIG fame).

>

> We've been on the DAN (Defeat Autism Now) protocol

> about 1.5 years

> now. We're also using Acyclovir to treat for the herpes

> virus and

> Diflucan for yeast. He's made slow progress but we

> would really love

> some expressive language.

>

> So how does the protocol differ from DAN? Does

> focus more on

> treating viruses?

>

> I'm anxious to call Dr. Goldberg's office. In the

> meantime, can

> someone tell me more info about the protocol and

> whether Dr.

> Goldberg accepts insurance? If not, what are his rates?

>

> Thanks!

>

>

>

>

>

>

>

[Guest guest]

Chronic infection going on not limited to viral...

Bartonella

Borrelia

mycoplasma

babesia

lyme disease and co infections of lyme

herpes family herpes 6 or HHV6

strep family

staph family

parasites

bacterium

viral

mold yeast fungus

hormone imbalance

become familiar with these infections and or dysbiosis that exist in

autism and others

Any doctor, DAN title, or no, who solely concentrates on ONE or

TWOpiece to the puzzle and doesn't mention or have knowledge of how

the above come into play, be forewarned you are not getting all the

pieces to aide your child towards healing or towards thriving.

[Guest guest]

Yes - these infections have been found in the CFIDS community as well - but

whether they are a cause or opportunistic infection as a result of immune

dysfunction have yet to be determined.  In many cases, helping to treat the

whole immune system and give it time to regulate (suppressive/preventive

therapy) can address the overall problems. 

HTH-

________________________________

From: extraordinaryboyilove <aaron2kristie@...>

Sent: Tuesday, November 11, 2008 7:07:59 PM

Subject: Re: New to group - How does differ from DAN?

Chronic infection going on not limited to viral...

Bartonella

Borrelia

mycoplasma

babesia

lyme disease and co infections of lyme

herpes family herpes 6 or HHV6

strep family

staph family

parasites

bacterium

viral

mold yeast fungus

hormone imbalance

become familiar with these infections and or dysbiosis that exist in

autism and others

Any doctor, DAN title, or no, who solely concentrates on ONE or

TWOpiece to the puzzle and doesn't mention or have knowledge of how

the above come into play, be forewarned you are not getting all the

pieces to aide your child towards healing or towards thriving.

[Guest guest]

I don't agree . These pervasive and chronic infections whether

opportunitistic or cause doesn't matter...they need to be eliminated.

Boosting the immune system by treating the immune system isn't enough

to kill these infections. Yes you want a bolstered immune system but

that isn't enough with these kids or a vast majority of these kids to

get them on the path towards healing and thriving.

Kristie

>

> Yes - these infections have been found in the CFIDS community as

well - but whether they are a cause or opportunistic infection as a

result of immune dysfunction have yet to be determined. In many

cases, helping to treat the whole immune system and give it time to

regulate (suppressive/preventive therapy) can address the overall

problems.

> HTH-

>

>

[Guest guest]

Kristie, I agree. I would add that antivirals are treating a

specific thing so treating any other chronic infection isn't exactly

different. If we were treating the immune system specifically we

would just be doing things like IMIG. By treating these chronic

illnesses we *are* treating the immune system. When a patient comes

in with PANDAS, strep is also treated. When viruses are an issue,

viruses are treated. When mycoplasma is an issue, bacteria is

treated. So to me, I don't understand what means by not

treating other chronic infections. If the immune system is

dysfunctional, the best way to get it functioning optimally is to

help it fight what it needs to fight . There isn't exactly a test to

tell whether anything is a root cause or opportunistic. My son has

high HHV6 titers but I certainly didn't have them checked at birth

and I didn't have mine checked when I was pregnant and he did have

Roseola when he was 2 so is it a root cause or opportunistic? Was it

the root cause of all his illnesses as an infant or did it start as

an opportunistic infection with Roseola and never left? Can't say

but we treat it anyway. Now we know that the herpes virus can become

a part of our genetic profile but no one is testing dna for herpes.

I think the distinction between root cause or opportunistic isn't

relevant. If the immune system is already dysfunctional, it's not

going to efficiently take care of or distinguish between

opportunistic or not. I took my son in for bronchitis when we first

started seeing Dr. G monthly for 6 months and he treated it and we

eventually went on to *stay* on antibiotics for a year to treat it as

a chronic infection. He had chronic bronchitis well before he had

Roseola so would bronchitis be a root cause? We simply don't know.

No one knows. Any time my son was sick I was expected to bring him

in to find out if it needed treatment and there were a lot of

opportunistic infections popping up that needed treating.

I think the issue at hand is whether or not this is a Dr. G thing.

Dr. G doesn't really believe many of these children have Lyme so

looking into Bartonella, Babesia and such are not on his radar.

There are many chronic infections that others believe our children

(and adults) have that he doesn't which is why he doesn't test or

treat them. If he believed it was a real issue, I don't think for a

second he wouldn't treat it but since he doesn't believe the

connection, he doesn't. At this point, it's really a matter of

opinions. Some do believe these should be treated and have the

evidence they present and some don't and have their evidence and

we're left needing to research it all and decide for ourselves what

side of the fence we sit on (or even if we're straddling the fence).

Cheryl

~Check out my blog: http://www.gryffins-tail.blogspot.com/

On Nov 13, 2008, at 12:09 AM, extraordinaryboyilove wrote:

> I don't agree . These pervasive and chronic infections whether

> opportunitistic or cause doesn't matter...they need to be eliminated.

> Boosting the immune system by treating the immune system isn't enough

> to kill these infections. Yes you want a bolstered immune system but

> that isn't enough with these kids or a vast majority of these kids to

> get them on the path towards healing and thriving.

>

> Kristie

>

>

>>

>> Yes - these infections have been found in the CFIDS community as

> well - but whether they are a cause or opportunistic infection as a

> result of immune dysfunction have yet to be determined. In many

> cases, helping to treat the whole immune system and give it time to

> regulate (suppressive/preventive therapy) can address the overall

> problems.

>> HTH-

>>

>>

>

> ------------------------------------

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute, the Parent Coalition,

> or the list moderator(s).

>

[Guest guest]

This is interesting and upsetting to me...I am afraid to miss something and my

daughter not get well like she should. Is it only DAN doctors who treat this?

Does anyone else have any input on this???

-

www.bloominwhereyourplanted.blogspot.com

" cher.lowrance " <cher.lowrance@...> wrote:

Kristie, I agree. I would add that antivirals are treating a

specific thing so treating any other chronic infection isn't exactly

different. If we were treating the immune system specifically we

would just be doing things like IMIG. By treating these chronic

illnesses we *are* treating the immune system. When a patient comes

in with PANDAS, strep is also treated. When viruses are an issue,

viruses are treated. When mycoplasma is an issue, bacteria is

treated. So to me, I don't understand what means by not

treating other chronic infections. If the immune system is

dysfunctional, the best way to get it functioning optimally is to

help it fight what it needs to fight . There isn't exactly a test to

tell whether anything is a root cause or opportunistic. My son has

high HHV6 titers but I certainly didn't have them checked at birth

and I didn't have mine checked when I was pregnant and he did have

Roseola when he was 2 so is it a root cause or opportunistic? Was it

the root cause of all his illnesses as an infant or did it start as

an opportunistic infection with Roseola and never left? Can't say

but we treat it anyway. Now we know that the herpes virus can become

a part of our genetic profile but no one is testing dna for herpes.

I think the distinction between root cause or opportunistic isn't

relevant. If the immune system is already dysfunctional, it's not

going to efficiently take care of or distinguish between

opportunistic or not. I took my son in for bronchitis when we first

started seeing Dr. G monthly for 6 months and he treated it and we

eventually went on to *stay* on antibiotics for a year to treat it as

a chronic infection. He had chronic bronchitis well before he had

Roseola so would bronchitis be a root cause? We simply don't know.

No one knows. Any time my son was sick I was expected to bring him

in to find out if it needed treatment and there were a lot of

opportunistic infections popping up that needed treating.

I think the issue at hand is whether or not this is a Dr. G thing.

Dr. G doesn't really believe many of these children have Lyme so

looking into Bartonella, Babesia and such are not on his radar.

There are many chronic infections that others believe our children

(and adults) have that he doesn't which is why he doesn't test or

treat them. If he believed it was a real issue, I don't think for a

second he wouldn't treat it but since he doesn't believe the

connection, he doesn't. At this point, it's really a matter of

opinions. Some do believe these should be treated and have the

evidence they present and some don't and have their evidence and

we're left needing to research it all and decide for ourselves what

side of the fence we sit on (or even if we're straddling the fence).

Cheryl

~Check out my blog: http://www.gryffins-tail.blogspot.com/

On Nov 13, 2008, at 12:09 AM, extraordinaryboyilove wrote:

> I don't agree . These pervasive and chronic infections whether

> opportunitistic or cause doesn't matter...they need to be eliminated.

> Boosting the immune system by treating the immune system isn't enough

> to kill these infections. Yes you want a bolstered immune system but

> that isn't enough with these kids or a vast majority of these kids to

> get them on the path towards healing and thriving.

>

> Kristie

>

>

>>

>> Yes - these infections have been found in the CFIDS community as

> well - but whether they are a cause or opportunistic infection as a

> result of immune dysfunction have yet to be determined. In many

> cases, helping to treat the whole immune system and give it time to

> regulate (suppressive/preventive therapy) can address the overall

> problems.

>> HTH-

>>

>>

>

> ------------------------------------

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute, the Parent Coalition,

> or the list moderator(s).

>