HHV6

[Guest guest]

I am new to this group. I just recieved my sons HHV6 titers and was not

pleased. My current DAN is not addressing this with anivirals--he

states the antviral that would work against this are not safe. He

does'nt feel like Valtrex or Favmir would do the job. I a mquestioning

this. I live in PA but I a willing to travel. Does anyone know where

I could go to see someone understanding .

[Guest guest]

We are going to NY.  The webiste is www.nnyautismcenter.com.  I decided to go

with someone who looked more at viral issues first, as I think this is much of

my son's issues.  They do this alot and are familiar with dosing and also for

lenght of dosing.

From: nm042 <sd042@...>

Subject: HHV6

Date: Sunday, July 20, 2008, 8:32 AM

I am new to this group. I just recieved my sons HHV6 titers and was not

pleased. My current DAN is not addressing this with anivirals--he

states the antviral that would work against this are not safe. He

does'nt feel like Valtrex or Favmir would do the job. I a mquestioning

this. I live in PA but I a willing to travel. Does anyone know where

I could go to see someone understanding .

[Guest guest]

What were your childs hhv 6 titers?

[Guest guest]

Anyone have any info on HHV 6 rising?  This is the highest I have seen so far at

1:320 labcorp. When EBV is elevated, HHV6 is not, and vice versa. We are on

Valtrex now, Guess I am trying to figure out Dr. G's next move. This is a first

for us. Thanks for any info. We are also on Immunovir. Thanks again

 Sincerely Noel

[Guest guest]

Just heard from . Noah's, my middle son (I have two on the protocol and

one about to start) titers are rising. Dr. G plans to change Valtrex to another

antiviral at our next appointment on Oct. 1. He'd do it now but we just upped

his Paxil.

We just got our youngest son's test results. His titers are high and NK cells

very low. Can anyone clue me in on the NK cell thing? I've read some stuff, but

I'm not sure of the implications. Our other two are on the low side of normal.

TIA,

Robyn

> From: NOEL SCHNEIDER <schneid99@...>

> Subject: Re: HHV6

> nids

> Date: Tuesday, September 16, 2008, 3:26 PM

> Anyone have any info on HHV 6 rising?  This is the highest

> I have seen so far at 1:320 labcorp. When EBV is elevated,

> HHV6 is not, and vice versa. We are on Valtrex now, Guess I

> am trying to figure out Dr. G's next move. This is a

> first for us. Thanks for any info. We are also on Immunovir.

> Thanks again

>

>

>  Sincerely Noel

>

>

[Guest guest]

Hey Robyn,

Low NKs are a common marker for & CFS - although it's not required.  Not

everyone has low NKs or low NK activity (Dr G doesn't measure that), so it may

be a subgroup of people.

It's considered likely that it's a marker for chronic viral infection - either

caused by, or resulting in...  It is thought that NKs below 8% (although actual

counts may skew percentages every once in a while) aren't quite sufficient to

completely contain human herpes viruses.  That said, there is also not much

indication that there truly IS a chronic viral infection ... just that it's more

likely for them to reactivate w/low NKs.  By themselves it isn't necessarily a

major problem, because there are many other facets of the immune system that

pick up the slack.  That percentage isn't a set range like other mainstream

labs.  My 'asd' son didn't have low NKs, but he likely had chronic HHV6.  My

youngest had low NKs (and I do too) - his NKs came up on antivirals.  I think a

lot of people see their NKs come up on antivirals - making it likely (if I'm

correct in that, and of course I'm speculating) that chronic viral infection IS

having some impact

on lowering NKs.     And don't forget that HHV6 can infect the NKs and modulate

their activity.

Low NKs are also associated w/OCD and anxiety.  That association is published in

a couple of places if you want to google it.  Again, there isn't anything

proving cause or effect.  They HAVE proved that NKs are lowered during times of

stress (ie med students preparing for an important exam - tested before and

after), but I think that there is a crosstalk, and that low NKs can cause ocd

and anxiety - probably not alone though.

I also think NKs are one of the types of cells that down-regulate the immune

response, so when they're not working as effectively, the chronic immune

upregulation is continuing to pump out inflammation.

More than you asked for, I'll bet.

HTH-

Re: HHV6

> nidsgroups (DOT) com

> Date: Tuesday, September 16, 2008, 3:26 PM

> Anyone have any info on HHV 6 rising?  This is the highest

> I have seen so far at 1:320 labcorp. When EBV is elevated,

> HHV6 is not, and vice versa. We are on Valtrex now, Guess I

> am trying to figure out Dr. G's next move. This is a

> first for us. Thanks for any info. We are also on Immunovir.

> Thanks again

>

>

>  Sincerely Noel

>

>

[Guest guest]

Our experience was that my son's HHV6 titers were always 1:10, but Dr G said he

was a classic case of HHV6 'hiding'.  It was when his titers went up to 1:300 or

1:600 (can't remember) and it coincided w/a wonderful change in the way his eyes

moved (they 'led' his head for the first time) that we knew we had hit the

virus.  So a rising titer isnt' always a bad thing alone.  Other combinations of

markers come into play to determine if there is a problem.  Odds are, you'll be

on Famvir next.  That was the best one for the boys.

 

I'm so curious about the immunovir.  Have you seen much?  Did you start it

early?  Were NKs low and that's why he's on it?  Are you paying a fortune for

it?

 

Thanks,

Re: HHV6

Anyone have any info on HHV 6 rising?  This is the highest I have seen so far at

1:320 labcorp. When EBV is elevated, HHV6 is not, and vice versa. We are on

Valtrex now, Guess I am trying to figure out Dr. G's next move. This is a first

for us. Thanks for any info. We are also on Immunovir. Thanks again

 Sincerely Noel

[Guest guest]

Thanks so much, . We came so close to not having him tested because he

was my so called NT kid. After todays' events (see previous post), I'm so glad

we did. He's so unpredictable and at times is deliriously happy and other time

so angry. He's got a great sense of humor but his emotion can turn on a dime.

This may be the explanation we're looking for.

Thanks for the information and I'll google for more info. I have to wonder

how/if the virus fits into his night terrors.

Thanks again.

Robyn

>

> > From: NOEL SCHNEIDER <schneid99@sbcglobal .net>

> > Subject: Re: HHV6

> > nidsgroups (DOT) com

> > Date: Tuesday, September 16, 2008, 3:26 PM

> > Anyone have any info on HHV 6 rising?  This is the

> highest

> > I have seen so far at 1:320 labcorp. When EBV is

> elevated,

> > HHV6 is not, and vice versa. We are on Valtrex now,

> Guess I

> > am trying to figure out Dr. G's next move. This is

> a

> > first for us. Thanks for any info. We are also on

> Immunovir.

> > Thanks again

> >

> >

> >  Sincerely Noel

> >

> >

[Guest guest]

, it is definately helping, very noticeable gains, I am wondering if the

immunovir is kicking up the virus.  We have been on it for a month and 1/2 . He

takes it 4 x day 1/2 tab. We get it from a pharmacy in Canada for $250.00. Well

worth it,  so far. I have not seen HHV 6 this high over the last year.  The

script lasts about 2 months or so.

 Sincerely Noel

From: <thecolemans4@...>

Subject: Re: Re: HHV6

Date: Tuesday, September 16, 2008, 6:25 PM

Our experience was that my son's HHV6 titers were always 1:10, but Dr G said he

was a classic case of HHV6 'hiding'.  It was when his titers went up to 1:300 or

1:600 (can't remember) and it coincided w/a wonderful change in the way his eyes

moved (they 'led' his head for the first time) that we knew we had hit the

virus.  So a rising titer isnt' always a bad thing alone.  Other combinations of

markers come into play to determine if there is a problem.  Odds are, you'll be

on Famvir next.  That was the best one for the boys.

 

I'm so curious about the immunovir.  Have you seen much?  Did you start it

early?  Were NKs low and that's why he's on it?  Are you paying a fortune for

it?

 

Thanks,

Re: HHV6

Anyone have any info on HHV 6 rising?  This is the highest I have seen so far at

1:320 labcorp. When EBV is elevated, HHV6 is not, and vice versa. We are on

Valtrex now, Guess I am trying to figure out Dr. G's next move. This is a first

for us. Thanks for any info. We are also on Immunovir. Thanks again

 Sincerely Noel

[Guest guest]

, yes my son has like N0 NK cells, it usually doesn't even register.

 Sincerely Noel

From: <thecolemans4@...>

Subject: Re: Re: HHV6

Date: Tuesday, September 16, 2008, 6:25 PM

Our experience was that my son's HHV6 titers were always 1:10, but Dr G said he

was a classic case of HHV6 'hiding'.  It was when his titers went up to 1:300 or

1:600 (can't remember) and it coincided w/a wonderful change in the way his eyes

moved (they 'led' his head for the first time) that we knew we had hit the

virus.  So a rising titer isnt' always a bad thing alone.  Other combinations of

markers come into play to determine if there is a problem.  Odds are, you'll be

on Famvir next.  That was the best one for the boys.

 

I'm so curious about the immunovir.  Have you seen much?  Did you start it

early?  Were NKs low and that's why he's on it?  Are you paying a fortune for

it?

 

Thanks,

Re: HHV6

Anyone have any info on HHV 6 rising?  This is the highest I have seen so far at

1:320 labcorp. When EBV is elevated, HHV6 is not, and vice versa. We are on

Valtrex now, Guess I am trying to figure out Dr. G's next move. This is a first

for us. Thanks for any info. We are also on Immunovir. Thanks again

 Sincerely Noel

[Guest guest]

And another perspective that could be better - instead of kicking up the virus,

perhaps kicking up the appropriate immune response (thereby building antibodies)

to help suppress it ... ?  Of course I guess if Dr G thinks it's kicking up,

then he's looking at other labs too to come to that conclusion, so I wouldn't

second guess lol .

Re: HHV6

Anyone have any info on HHV 6 rising?  This is the highest I have seen so far at

1:320 labcorp. When EBV is elevated, HHV6 is not, and vice versa. We are on

Valtrex now, Guess I am trying to figure out Dr. G's next move. This is a first

for us. Thanks for any info. We are also on Immunovir. Thanks again

 Sincerely Noel

[Guest guest]

Night terrors?  I associate strep, mycoplasma, and other bacterial (ie sinus)

infections w/night terrors.  The only 3 people I've known of who had them were

having them after periods of chronic strep.  But I also think chronic strep

would likely be connected to NKs. 

Haven't read the other post yet ... wish they went in the other order.

Re: HHV6

> > nidsgroups (DOT) com

> > Date: Tuesday, September 16, 2008, 3:26 PM

> > Anyone have any info on HHV 6 rising?  This is the

> highest

> > I have seen so far at 1:320 labcorp. When EBV is

> elevated,

> > HHV6 is not, and vice versa. We are on Valtrex now,

> Guess I

> > am trying to figure out Dr. G's next move. This is

> a

> > first for us. Thanks for any info. We are also on

> Immunovir.

> > Thanks again

> >

> >

> >  Sincerely Noel

> >

> >

[Guest guest]

>>Low NKs are also associated w/OCD and anxiety<<

Wow -- that explains a lot!

Anti-virals haven't helped in 's case; his titers area almost

always in the normal range, but his NK's are very low. This must be

why his OCD and anxiety are the only things don't really respond to

the SSRI medications! Dr. G wants us to try Imunovir but the cost is

so prohibitive that we've put it off for a few months, as we're in the

middle of buying a house. That gives me extra incentive.

In the meantime, we're doing IMGG shots every three weeks. The first

one was last Friday. Can anyone tell me what changes, if any, you

saw? How soon? And what, exactly, is IMGG supposed to treat?

TIA,

Donna

[Guest guest]

The shots are immunoglobulins. If he is low in immunoglobulins you

need to use it to bring that back up. If they are normal, it can

help with immune response.

We did shots for a long time and we never saw anything. We also had

low IgM and those never really raised, either. For some, it works

wonders. Not so much for my son. Dr. G also wanted us to start

Immunovir but we simply can't afford it.

Cheryl

On Sep 17, 2008, at 11:07 PM, thefamily007 wrote:

>>> Low NKs are also associated w/OCD and anxiety<<

>

> Wow -- that explains a lot!

>

> Anti-virals haven't helped in 's case; his titers area almost

> always in the normal range, but his NK's are very low. This must be

> why his OCD and anxiety are the only things don't really respond to

> the SSRI medications! Dr. G wants us to try Imunovir but the cost is

> so prohibitive that we've put it off for a few months, as we're in the

> middle of buying a house. That gives me extra incentive.

>

> In the meantime, we're doing IMGG shots every three weeks. The first

> one was last Friday. Can anyone tell me what changes, if any, you

> saw? How soon? And what, exactly, is IMGG supposed to treat?

>

> TIA,

>

> Donna

>

>

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

>

> 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]

Thanks again, , for the response. I have chronically high strep titers;

it makes me wonder if he does as well. Can't wait to get the results in the

mail. As soon as I do, I'll probably have more ??????

> >

> > > From: NOEL SCHNEIDER <schneid99@sbcgloba l

> .net>

> > > Subject: Re: HHV6

> > > nidsgroups (DOT) com

> > > Date: Tuesday, September 16, 2008, 3:26 PM

> > > Anyone have any info on HHV 6 rising?  This is

> the

> > highest

> > > I have seen so far at 1:320 labcorp. When EBV is

> > elevated,

> > > HHV6 is not, and vice versa. We are on Valtrex

> now,

> > Guess I

> > > am trying to figure out Dr. G's next move.

> This is

> > a

> > > first for us. Thanks for any info. We are also on

> > Immunovir.

> > > Thanks again

> > >

> > >

> > >  Sincerely Noel

> > >

> > > [Non-text portions of this message have been

> removed]

> >

> >

> >

> >

> >

> >

[Guest guest]

It makes a lot of sense to me as well. Elijah seems to have a lot of anxiety. At

his age, he still has separation anxiety from me and actually was very angry

last week when I had to attend a bridal shower without him.

robyn

P.S. Donna, congrats on the house. Where is it?

> From: thefamily007 <donnaaron@...>

> Subject: Re: HHV6

>

> Date: Wednesday, September 17, 2008, 11:07 PM

> >>Low NKs are also associated w/OCD and

> anxiety<<

>

> Wow -- that explains a lot!

>

> Anti-virals haven't helped in 's case; his

> titers area almost

> always in the normal range, but his NK's are very low.

> This must be

> why his OCD and anxiety are the only things don't

> really respond to

> the SSRI medications! Dr. G wants us to try Imunovir but

> the cost is

> so prohibitive that we've put it off for a few months,

> as we're in the

> middle of buying a house. That gives me extra incentive.

>

> In the meantime, we're doing IMGG shots every three

> weeks. The first

> one was last Friday. Can anyone tell me what changes, if

> any, you

> saw? How soon? And what, exactly, is IMGG supposed to

> treat?

>

> TIA,

>

> Donna

[Guest guest]

Hey Robyn -

I was always surprised that my boys's ASO titers (strep titers) aren't elevated

like mine, especially since when they were 2 & 3-4 & 5, the way I knew they were

coming down w/strep was the onset of some OCD behaviors exactly 3 days prior to

any symptoms.  (They have never caught my mycoplasma - another (1/2 as strong)

trigger for anxiety.  And one of the kids I know who has night terrors - his mom

carries mycoplasma chronically too and I suspect his 'asthma' is actually

mycoplasma.) 

I'll be curious what you find out.

 

Re: HHV6

> > > nidsgroups (DOT) com

> > > Date: Tuesday, September 16, 2008, 3:26 PM

> > > Anyone have any info on HHV 6 rising?  This is

> the

> > highest

> > > I have seen so far at 1:320 labcorp. When EBV is

> > elevated,

> > > HHV6 is not, and vice versa. We are on Valtrex

> now,

> > Guess I

> > > am trying to figure out Dr. G's next move.

> This is

> > a

> > > first for us. Thanks for any info. We are also on

> > Immunovir.

> > > Thanks again

> > >

> > >

> > >  Sincerely Noel

> > >

> > > [Non-text portions of this message have been

> removed]

> >

> >

> >

> >

> >

> >

[Guest guest]

Of course i will hang there... No other choice.

And when HHV6 come down , what happens? Do they get better? ANd how long shall

we wait for the virus to come down(aprox. of course)? I was with Valtrex 1 year

and didn´t work.

Now we began Famvir, just 3 days.

Thanks for your support.

>

> Hang in there!! My son's HHV6 at one point was over 10,000:1, but now it is

> ZERO ;-).

>

>

>

> Kristy

>

>

>

> From: [mailto: ] On Behalf Of ia

> Azañedo

> Sent: Friday, March 27, 2009 6:34 PM

>

> Subject: (unknown)

>

>

>

> My girl will also begin inmunovir next month, it is because she keeps HHV6

> very high after 6 months of Valtrex.

> Dr. G is changing valtrex to Famvir, and next month inmunovir to support the

> famvir.

>

>

>

[Guest guest]

My son's HHV6 was 1:10, or just negative, but Dr Goldberg said the first day

that he was a " classic HHV6 kid " , and that his immune system was not recognizing

it.  Only once did his antibodies leap up - and they only went up to maybe 1:640

or something like that ... but it coincided with the neatest change to his eye

contact, and things were uphill ever since, even after they dropped right back

down to 1:10 (which is practically negative I think).  My other son - his titers

are usually negative, although they have shown up once or twice as 1:10 later

on, but it isn't possible that he does not have HHV6 too.  His titers never

jumped up, and he's the one who is having CFIDS now and not doing so well

(albeit better than a few months ago) when he had to stop the meds a couple of

years ago.

The very high titers do not necessarily mean high viral count - it can be a

symptom of the wrong overexpression of one type of the immune system - just

producing antibodies instead of switching over to the other response too.  So

sometimes those antibodies going down is showing the 'shift' moving back into

place? Or that by helping suppress viral activity, it allows the immune system

to stop over-producing antibodies.

Anyway, the actual antibodies numbers are not an indicator of how much of the

virus is infecting someone - instead it is only a measure of the immune system's

reaction to it, and has to also be considered along with other labs like CBCs

and immune panels, etc.

HTH-

________________________________

From: vanessagamarrac1 <vanessagamarrac1@...>

Sent: Monday, March 30, 2009 5:24:22 PM

Subject: Re: HHV6

Of course i will hang there... No other choice.

And when HHV6 come down , what happens? Do they get better? ANd how long shall

we wait for the virus to come down(aprox. of course)? I was with Valtrex 1 year

and didn´t work.

Now we began Famvir, just 3 days.

Thanks for your support.

>

> Hang in there!! My son's HHV6 at one point was over 10,000:1, but now it is

> ZERO ;-).

>

>

>

> Kristy

>

>

>

> From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of ia

> Azañedo

> Sent: Friday, March 27, 2009 6:34 PM

> groups (DOT) com

> Subject: (unknown)

>

>

>

> My girl will also begin inmunovir next month, it is because she keeps HHV6

> very high after 6 months of Valtrex.

> Dr. G is changing valtrex to Famvir, and next month inmunovir to support the

> famvir.

>

>

>

[Guest guest]

My most severely affected son was also negative for HHV 6 when first tested.

After a six week challenge on Valtrex, his numbers went through the roof.

Subsequently, they came back down, but then shot up again, so we switched for

Famvir. Now he's in the equivocal range.

All the best,

Robyn

> From: <thecolemans4@...>

> Subject: Re: Re: HHV6

>

> Date: Tuesday, March 31, 2009, 8:30 AM

> My son's HHV6 was 1:10, or just negative, but Dr

> Goldberg said the first day that he was a " classic HHV6

> kid " , and that his immune system was not recognizing

> it.  Only once did his antibodies leap up - and they only

> went up to maybe 1:640 or something like that ... but it

> coincided with the neatest change to his eye contact, and

> things were uphill ever since, even after they dropped right

> back down to 1:10 (which is practically negative I think). 

> My other son - his titers are usually negative, although

> they have shown up once or twice as 1:10 later on, but it

> isn't possible that he does not have HHV6 too.  His

> titers never jumped up, and he's the one who is having

> CFIDS now and not doing so well (albeit better than a few

> months ago) when he had to stop the meds a couple of years

> ago.

>

> The very high titers do not necessarily mean high viral

> count - it can be a symptom of the wrong overexpression of

> one type of the immune system - just producing antibodies

> instead of switching over to the other response too.  So

> sometimes those antibodies going down is showing the

> 'shift' moving back into place? Or that by helping

> suppress viral activity, it allows the immune system to stop

> over-producing antibodies.

>

> Anyway, the actual antibodies numbers are not an indicator

> of how much of the virus is infecting someone - instead it

> is only a measure of the immune system's reaction to it,

> and has to also be considered along with other labs like

> CBCs and immune panels, etc.

>

> HTH-

>

>

>

>

>

> ________________________________

> From: vanessagamarrac1 <vanessagamarrac1@...>

>

> Sent: Monday, March 30, 2009 5:24:22 PM

> Subject: Re: HHV6

>

>

> Of course i will hang there... No other choice.

>

> And when HHV6 come down , what happens? Do they get better?

> ANd how long shall we wait for the virus to come down(aprox.

> of course)? I was with Valtrex 1 year and didn´t work.

> Now we began Famvir, just 3 days.

> Thanks for your support.

>

>

>

> >

> > Hang in there!! My son's HHV6 at one point was

> over 10,000:1, but now it is

> > ZERO ;-).

> >

> >

> >

> > Kristy

> >

> >

> >

> > From: groups (DOT) com [mailto:groups (DOT)

> com] On Behalf Of ia

> > Azañedo

> > Sent: Friday, March 27, 2009 6:34 PM

> > groups (DOT) com

> > Subject: (unknown)

> >

> >

> >

> > My girl will also begin inmunovir next month, it is

> because she keeps HHV6

> > very high after 6 months of Valtrex.

> > Dr. G is changing valtrex to Famvir, and next month

> inmunovir to support the

> > famvir.

> >

> >

> >

[Guest guest]

Does Dr. G typically recommend Valtrex or Famvir for HHV-6? What about

acyclovir?

Thanks,

[Guest guest]

He started my son on Valtrex, which initially worked but then titers went up

again. My three boys and I are now on Famvir and it's working great!

> From: Mattila <christine_mattila@...>

> Subject: Re: HHV6

>

> Date: Wednesday, April 1, 2009, 11:28 AM

> Does Dr. G typically recommend Valtrex or Famvir for HHV-6?

> What about acyclovir?

> Thanks,

>

[Guest guest]

Dr. G also uses Famvir and Valtrex. My 6 year old son weighs about 45lbs and

takes 1 1/2 of a 125mg tablet in the morning, 1 1/4 in the afternoon and 1 1/2

in the evening.

HTH,

Robyn

From: Caroline Glover <sfglover@...>

Subject: Re: hhv6

Date: Tuesday, July 14, 2009, 5:11 PM

My son is a patient of Dr. G . He weighs 48 lbs. and takes Zovirax (5

times

a day)... 400mg in the morning, 300mg three times in the middle of the day,

400mg at night. (This is another antiviral Dr. G. uses). (We split the

pills).

Caroline

From: neidhardtashley <neidhardtashley>

Reply-<groups (DOT) com>

Date: Tue, 07 Jul 2009 01:48:02 +0000

<groups (DOT) com>

Subject: hhv6

My son's titer for HHV6 came back positive for current infection. Im waiting

to get my appt with Dr G. My current Dr wants to put him on Valtrex. What

dose has Dr G put kids on ? My son weighs 50lbs