New to Group: Testing Question

[Guest guest]

I think most of these kids have extremely high levels of HHV-6 and some EBV. Dr.

G will monitor these regularly to judge effectiveness of meds. My son had high

HHV6. Valtrex didn't bring it down. Switched to acyclovir and it came down to

normal and has stayed there. At first I thought this was the disease, but now I

think they're just susceptible to these viruses because of bacteria,

inflammation, and immune issues.

-- Sent from my Palm Pre

[Guest guest]

Hi Tammy,

Your pediatrician is correct that in regards to directly impacting treatment,

these labs probably wouldn't be that helpful.  What they can show is presence

of active infection (actually rare), but most likely they can paint a picture of

immune dysfunction with very high levels of antibodies (again, not very

significant on their own), etc.  In those cases, monitoring those over the time

on the protocol can be useful.

It wouldn't hurt any to leave those off.  The immune panel is very good -

probably the most important -  to have.  I'd also push for the ASO titer. 

The rest could be done at the office - it wouldn't take that much away from your

visit.  I can't fault your ped for not being interested in those from where the

current mainstream stands.  Besides, a lot of times those viral titers aren't

painting a true picture anyway - part of the dysfunction.  So Dr G can draw

them and you can watch what happens to them over a year's time.

HTH

________________________________

From: Tammy Koupal <tamkoupal@...>

< >

Sent: Sun, March 14, 2010 8:42:46 PM

Subject: New to Group: Testing Question

 

Hello Everyone,

We're new to the group and are very excited about our first appointment with Dr.

G next week. Our son is 7 and has been on DAN protocol treatments for nearly 4

years with little benefit. We have been tying to get as much of the suggested

protocol testing done before our appointment because we live so far away

from LA and we want to make the most of this visit. Our current pediatrician has

been somewhat cooperative about ordering some of these, but is balking at

others. We got the immune panel, which was quite abnormal, but he says he does

not see the usefulness of the HHV6 and CMV since most of the population has been

exposed to them. I have not asked him yet for the EBV. Can anyone tell me why it

is helpful to have these tests? He and I sometimes duke it out and sometimes I

can win him over Thanks!!

Tammy

[Guest guest]

Tammy

Two things. Your Pediatrician does not need to approve. Dr G's office can fax a

request for these test and then receive the results. One other issue is the

diagnosis. If your child is diagnosed as immune dysfunction many insurance

companies will approve therapies they deny children with Autism. This can make

the additional tests worthwhile in that they support the correct diagnosis.

Just a thought.

Bill K

From: <thecolemans4@...>

Subject: Re: New to Group: Testing Question

Date: Wednesday, March 17, 2010, 1:31 PM

 

Hi Tammy,

Your pediatrician is correct that in regards to directly impacting treatment,

these labs probably wouldn't be that helpful. What they can show is presence of

active infection (actually rare), but most likely they can paint a picture of

immune dysfunction with very high levels of antibodies (again, not very

significant on their own), etc. In those cases, monitoring those over the time

on the protocol can be useful.

It wouldn't hurt any to leave those off. The immune panel is very good -

probably the most important - to have. I'd also push for the ASO titer. The

rest could be done at the office - it wouldn't take that much away from your

visit. I can't fault your ped for not being interested in those from where the

current mainstream stands. Besides, a lot of times those viral titers aren't

painting a true picture anyway - part of the dysfunction. So Dr G can draw them

and you can watch what happens to them over a year's time.

HTH

____________ _________ _________ __

From: Tammy Koupal <tamkoupalcomcast (DOT) net>

<groups (DOT) com>

Sent: Sun, March 14, 2010 8:42:46 PM

Subject: New to Group: Testing Question

Hello Everyone,

We're new to the group and are very excited about our first appointment with Dr.

G next week. Our son is 7 and has been on DAN protocol treatments for nearly 4

years with little benefit. We have been tying to get as much of the suggested

protocol testing done before our appointment because we live so far away

from LA and we want to make the most of this visit. Our current pediatrician has

been somewhat cooperative about ordering some of these, but is balking at

others. We got the immune panel, which was quite abnormal, but he says he does

not see the usefulness of the HHV6 and CMV since most of the population has been

exposed to them. I have not asked him yet for the EBV. Can anyone tell me why it

is helpful to have these tests? He and I sometimes duke it out and sometimes I

can win him over Thanks!!

Tammy

[Guest guest]

Someone e-mailed me personally and said that one of these doctors would fax an

order for tests prior to driving across the country to being seen. (I think Dr.

)I called yesterday and they do not do this. You have to drive across the

country (for me it is anyways) FIRST and be seen in the office or no labs will

be written.

I think it would be the same for all doctors.

>

> From: <thecolemans4@...>

> Subject: Re: New to Group: Testing Question

>

> Date: Wednesday, March 17, 2010, 1:31 PM

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Hi Tammy,

>

> Your pediatrician is correct that in regards to directly impacting treatment,

these labs probably wouldn't be that helpful. What they can show is presence of

active infection (actually rare), but most likely they can paint a picture of

immune dysfunction with very high levels of antibodies (again, not very

significant on their own), etc. In those cases, monitoring those over the time

on the protocol can be useful.

>

>

>

> It wouldn't hurt any to leave those off. The immune panel is very good -

probably the most important - to have. I'd also push for the ASO titer. The

rest could be done at the office - it wouldn't take that much away from your

visit. I can't fault your ped for not being interested in those from where the

current mainstream stands. Besides, a lot of times those viral titers aren't

painting a true picture anyway - part of the dysfunction. So Dr G can draw them

and you can watch what happens to them over a year's time.

>

>

>

> HTH

>

>

>

>

>

> ____________ _________ _________ __

>

> From: Tammy Koupal <tamkoupalcomcast (DOT) net>

>

> <groups (DOT) com>

>

> Sent: Sun, March 14, 2010 8:42:46 PM

>

> Subject: New to Group: Testing Question

>

>

>

>

>

> Hello Everyone,

>

> We're new to the group and are very excited about our first appointment with

Dr. G next week. Our son is 7 and has been on DAN protocol treatments for nearly

4 years with little benefit. We have been tying to get as much of the suggested

protocol testing done before our appointment because we live so far away

from LA and we want to make the most of this visit. Our current pediatrician has

been somewhat cooperative about ordering some of these, but is balking at

others. We got the immune panel, which was quite abnormal, but he says he does

not see the usefulness of the HHV6 and CMV since most of the population has been

exposed to them. I have not asked him yet for the EBV. Can anyone tell me why it

is helpful to have these tests? He and I sometimes duke it out and sometimes I

can win him over Thanks!!

>

> Tammy

>

>

>

>

[Guest guest]

Sounds like you dont know what you are talking about because I did not

experience that.

> >

> > From: <thecolemans4@>

> > Subject: Re: New to Group: Testing Question

> >

> > Date: Wednesday, March 17, 2010, 1:31 PM

> >

> >

> >

> >

> >

> >

> >

> >  

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Hi Tammy,

> >

> > Your pediatrician is correct that in regards to directly impacting

treatment, these labs probably wouldn't be that helpful. What they can show is

presence of active infection (actually rare), but most likely they can paint a

picture of immune dysfunction with very high levels of antibodies (again, not

very significant on their own), etc. In those cases, monitoring those over the

time on the protocol can be useful.

> >

> >

> >

> > It wouldn't hurt any to leave those off. The immune panel is very good -

probably the most important - to have. I'd also push for the ASO titer. The

rest could be done at the office - it wouldn't take that much away from your

visit. I can't fault your ped for not being interested in those from where the

current mainstream stands. Besides, a lot of times those viral titers aren't

painting a true picture anyway - part of the dysfunction. So Dr G can draw them

and you can watch what happens to them over a year's time.

> >

> >

> >

> > HTH

> >

> >

> >

> >

> >

> > ____________ _________ _________ __

> >

> > From: Tammy Koupal <tamkoupalcomcast (DOT) net>

> >

> > <groups (DOT) com>

> >

> > Sent: Sun, March 14, 2010 8:42:46 PM

> >

> > Subject: New to Group: Testing Question

> >

> >

> >

> >

> >

> > Hello Everyone,

> >

> > We're new to the group and are very excited about our first appointment with

Dr. G next week. Our son is 7 and has been on DAN protocol treatments for nearly

4 years with little benefit. We have been tying to get as much of the suggested

protocol testing done before our appointment because we live so far away

from LA and we want to make the most of this visit. Our current pediatrician has

been somewhat cooperative about ordering some of these, but is balking at

others. We got the immune panel, which was quite abnormal, but he says he does

not see the usefulness of the HHV6 and CMV since most of the population has been

exposed to them. I have not asked him yet for the EBV. Can anyone tell me why it

is helpful to have these tests? He and I sometimes duke it out and sometimes I

can win him over Thanks!!

> >

> > Tammy

> >

> >

> >

> >