RE: Re: More to Kristie

[Guest guest]

Hi Kristie-

Yes, the antifungal and antiviral do work well

together, and this is what DR Goldberg will be doing.

He simply starts them separately. BTW - he's been

doing so 10 years before any other groups were

suggesting antivirals... if that helps build your

confidence. They don't 'require' each other to work

well... (that's what I heard another group say once) -

but rather each is doing it's part in supressing

infection, and taking a load off the immune system,

overcoming infections that are exacerbating the immune

system, and giving it the opportunity to normalize and

begin to cool off.

This is going to take quite a few months.. it takes

approximately (on average) up to a year for this

normalization to take place, and then the next year is

where the majority of the developments take hold. In

our case, we had dramatic leaps and improvements

within weeks with every med change, but it is usually

a slower and steadier pace. Still, it took over a

year for both of my boys for that consistent leveling

to take place ... where illness or diet triggers or

allergies stopped having such a dramatic effect on

their behavior.

Dr G doesn't start the meds rapidly, and I felt

impatient at first too, but his method is so

progressive. And you can truly see what benefits

which med is bringing about when you start them

slowly. The antiviral is doing the biggest part of

the job by targeting the most significant triggers,

and the antifungal is like the coolwhip on top.

--- aaron2kristie <aaron2kristie@...> wrote:

I am

> concerned because

> other parents have stated (in other groups mind you)

> that really an

> anti fungal is necessary at the same time as doing

> Valtrex.

>

> BTW your post below about HHV-6...1:320 represents "

> 4 fold rise in

> titers are suggestive of either recent, primary or

> reactivated

> infection. The presence of elevated titers to HHV6

> in the absence of

> responses to HAV, HBV, CMV and EBV suggest that

> titer results are

> associated with high specificity. "

>

> According to hhv-6foundation.org " IN CSF patients,

> 89% of patients

> with IgG titers of 1:320 and above were found to

> have active

> infections by culture. "

>

__________________________________________________

[Guest guest]

Kristie,

Just a little advice for the video EEG (been there, done that)... remember

to take a zip-up hoodie or something to keep warm in that fastens up the

front, as there will be no pulling anything on or off over the head until

those electrodes are removed. Sometimes it gets so cold in those rooms!

Caroline

> From: aaron2kristie <aaron2kristie@...>

> Reply-< >

> Date: Sun, 27 Aug 2006 01:15:26 +0000

> < >

> Subject: Re: More to Kristie

>

> We will in the

> upcoming months do a video 3-4 day EEG at UC Irvine or CHOC in

> Orange and my personal hope is that the slowing that has shown on

> two EEG's will no longer be present...whether our not the

> neurologist attributes this to Valtrex that's another story.

[Guest guest]

Kristie,

My son's system could not handle the Valtrex even after I washed off the

blue dye, he told us to get it compounded from Friendly Hills Pharmacy and

that did it!

Good luck!

Re: More to Kristie

Yeah I am washing off the blue coating and everything. I give my son

Primadaphilous (acidophilous). Also Dr G did say we would start an

anti fungal in a month...end of September. I am concerned because

other parents have stated (in other groups mind you) that really an

anti fungal is necessary at the same time as doing Valtrex.

BTW your post below about HHV-6...1:320 represents " 4 fold rise in

titers are suggestive of either recent, primary or reactivated

infection. The presence of elevated titers to HHV6 in the absence of

responses to HAV, HBV, CMV and EBV suggest that titer results are

associated with high specificity. "

According to hhv-6foundation.org " IN CSF patients, 89% of patients

with IgG titers of 1:320 and above were found to have active

infections by culture. "

This is what I have discovered thus far.

I am glad we decided to just do it. Dr G says we are doing a trial

to see what changes we see and decide whether or not to continue. I

think he is being pretty patient with me and understanding too. Also

with our ped neurologist we decided last week to stop the anti

convulsant and Dr G was of course happy about this. We will in the

upcoming months do a video 3-4 day EEG at UC Irvine or CHOC in

Orange and my personal hope is that the slowing that has shown on

two EEG's will no longer be present...whether our not the

neurologist attributes this to Valtrex that's another story. I

definitely would though!!! Would love it too if the " spikes " on the

EEG are gone altogether.Here's hoping for good things.

Kristie

Aidan 3.2

[Guest guest]

Thank you very much, Kristie, for this info! I will

go to that site re the 2nd comment about 1:320 showing

active infection by cultures... that is going to be

very helpful for me!!

The 4 fold rise has to be documented by a previous

titer being run, though, right? I think that's it....

Of course, in my experience, a rise in ASO titers

going from 600 to 1100 still doesn't " appear to

indicate a problem " ...not matter what the literature

says... (WHAT??) and doesn't necessarily mean

anything (unless what...you're half dead?).

Sorry - " someone " is a little ticked off at doctors

this week. lol

--- aaron2kristie <aaron2kristie@...> wrote:

> BTW your post below about HHV-6...1:320 represents "

> 4 fold rise in

> titers are suggestive of either recent, primary or

> reactivated

> infection.

>

> According to hhv-6foundation.org " IN CSF patients,

> 89% of patients

> with IgG titers of 1:320 and above were found to

> have active

> infections by culture. "

>

>

> Kristie

> Aidan 3.2

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