HHV6

[Guest guest]

Just learned that ViraCor will be able to distinguish between the 2 come Dec.

1.

I was just surprised, because I thought HHV6a specifically was said to be

high in PWC's, almost approaching a bit of a marker. Now I learn it seems

it's just important to know if you have any HHV6 active infection.

Jim

[Guest guest]

Jim,

It seems to be a tall order trying to find out if you've got A vs. B strain.

Steve B.

Re: HHV6

> I am going to get my blood tested for HHV6 by Dr Ablashi. He said that

they

> don't check for HHV6a vs HHV6b, just the presence and activation of any

HHV6.

> Is that true for everyone else who has been tested? Is it that tough to

> separate which strain one may have?

>

> Jim

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

Steve,

According to Ablashi, he believes Ampligen, Kutapressin, and fascarnet (I

could be way off on this name - he said it rather quickly) are effective

against both HHV6's. He believes gancyclovir and acyclovir don't work. So,

to him, it doesn't matter if it's A or B (treatment-wise). But, as you said,

for diagnoastic reasons, it may be of help.

Jim

[Guest guest]

Jim,

That HHV6 test will be very useful for recent PWC's. If they have the B

variant they may actually be misdiagnosed and actually have MS. Also, just

knowing you have HHV6 will be useful because although there appears to be

little in the way of treatment at this time, their experimenting with

ganciclovir and other antivirals that may keep viral load down or knock it

out. Steve B.

Re: HHV6

> Just learned that ViraCor will be able to distinguish between the 2 come

Dec.

> 1.

>

> I was just surprised, because I thought HHV6a specifically was said to be

> high in PWC's, almost approaching a bit of a marker. Now I learn it seems

> it's just important to know if you have any HHV6 active infection.

>

> Jim

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

Jim,

You may want to read " New Triad Model for HHV6-A and Imp-lications for

Therapies " from the Winter 1999 issue of The National Forum, portions of

which are shown at www.ncf-net.org. I've tried all of the non-prescription

supplements that are listed in this article and are supposed to be useful in

suppressing HHV6-A and had no change in my condition. Consequently, I doubt

I have activated HHV6 but will probably have the test done by Viracor when

available if the cost is reasonable. Steve B.

Re: HHV6

> Steve,

>

> According to Ablashi, he believes Ampligen, Kutapressin, and fascarnet (I

> could be way off on this name - he said it rather quickly) are effective

> against both HHV6's. He believes gancyclovir and acyclovir don't work.

So,

> to him, it doesn't matter if it's A or B (treatment-wise). But, as you

said,

> for diagnoastic reasons, it may be of help.

>

> Jim

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

joyce

i think a lot of people are waiting on a new HHV-6A antibody test

that is supposed to be available some time this June. The rumor that

i have heard is that the test is going to be offered by the US

division of the RED LABS which i believe is in Nevada.

the test is supposed to sepperate those who are specifically infected

with the A variant of HHV-6 - something that is difficult to do now.

the PCR tests are very " specific " which means if you test positive

then it most likely means you have the virus, but not

very " sensitive " - meaning you can get a negative but still have the

virus.

the current antibody tests do not distinguish between A & B.

here are some of the labs that do the PCR test:

MDL- this lab takes insurance

http://www.mdlab.com/html/home.html

Immunosciences

http://www.immuno-sci-lab.com/

Wisconsin Lab

http://www.ivpresearch.org/

Red Labs - you'll have to email the Beligian lab to get their US

contact info.

http://www.redlabs.com/en/index.html

there is one other lab that i can't remember right now. i think Dr

Cheney used to use it. maybe someone else here can remember the name.

actually, i just thought of it. it's Commonwealth Biotechnologies,

but in lookiing for it i realized that all this info is at the HHV-6

foundation site.

look there and you will get all the info you need.

http://www.hhv-6foundation.org/index.html

> Where is the best place to get tested for this A & B? Does someone

do a PCR? I don't want to start on the expensive transfer factor for

this unless there is a current active virus. I need to get the lab

info before I go to the dr in case he might listen to me. thanks joyce

>

>

[Guest guest]

Hi, Joyce.

I know http://www.hhv-6foundation.org earlier this year stated they anticipated

announcing the availablity of an early antigen(EA) test for this virus soon.

This test will supposedly be a distinctly superior test of any to date for

detecting whether this virus is active in any given CFIDS patient.

They also have a reference as where to go for up to date PCR testing of all

themain herpes family viruses. And it seems the most effective method for

treatinghhv-6a that they suggest or reference through one particular study is a

combination the antiviral called foscarnet and glutathione repletion(via

ImmunePro in that instance).

" The first wealth is health "

> Where is the best place to get tested for this A & B? Does someone do a PCR?

 

  

[Guest guest]

Thanks for sharing this link, Anne. My son has elevated HHV6 titers and it's one of the reasons why we're on Valtrex. But did you read this on page 6 of that site?

Treatment

Treatment of HHV-6 infection has not received much attention in the literature. The obvious initial consideration for a treatment strategy would be antiviral therapy. Several antiviral agents are now available for the prevention and treatment of the herpes viruses (HSV 1 and 2, VZV, and CMV) (82). The role of these agents in the treatment of HHV-6 infections is not well established due to limited data. In vitro studies with HHV-6 have shown that the virus is resistant to acyclovir (Zovirax) at achievable serum levels (83, 84, 85). Although not specifically studied, the other oral agents, famciclovir (Famvir) and valacyclovir (Valtrex) are likely to be ineffective as well.

Now I realize that they indicate Valtrex has not been specifically studied, but it bummed me out to read that.....perhaps once we run titers and see that his levels have come down, I'll pass his labs along so that they can see that Valtrex may be a good option for HHV6.

From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of anneecbrynnSent: Friday, June 02, 2006 12:22 PMmb12 valtrex Subject: HHV6

Thought this might be of some interest...http://www.plazamedicine.com/hhv6/hhv6_1.htmlAnne

[Guest guest]

Thanks for sharing this link, Anne. My son has elevated HHV6 titers and it's one of the reasons why we're on Valtrex. But did you read this on page 6 of that site?

Treatment

Treatment of HHV-6 infection has not received much attention in the literature. The obvious initial consideration for a treatment strategy would be antiviral therapy. Several antiviral agents are now available for the prevention and treatment of the herpes viruses (HSV 1 and 2, VZV, and CMV) (82). The role of these agents in the treatment of HHV-6 infections is not well established due to limited data. In vitro studies with HHV-6 have shown that the virus is resistant to acyclovir (Zovirax) at achievable serum levels (83, 84, 85). Although not specifically studied, the other oral agents, famciclovir (Famvir) and valacyclovir (Valtrex) are likely to be ineffective as well.

Now I realize that they indicate Valtrex has not been specifically studied, but it bummed me out to read that.....perhaps once we run titers and see that his levels have come down, I'll pass his labs along so that they can see that Valtrex may be a good option for HHV6.

From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of anneecbrynnSent: Friday, June 02, 2006 12:22 PMmb12 valtrex Subject: HHV6

Thought this might be of some interest...http://www.plazamedicine.com/hhv6/hhv6_1.htmlAnne

[Guest guest]

Someone just posted a great website here about HHV6 a few days ago:

http://www.plazamedicine.com/hhv6/hhv6_1.html

My understanding is most of us carry it and it lies dormant until something triggers it to make it damaging.

A really interesting read is "The Virus Within" which is about HHV6. There are researchers who feel that CFS, Fibyromalgia, and many other diseases (including Schizophrenia) are caused by HHV6 gone bad.

HV6

elsass@... celsass1

Tue Jun 6, 2006 2:11 pm (PST)

Just curious about the various strains of Herpes virus. I know that thefirst 2 are responsible for genital herpes and cold sore, but what about theother strains, such as HV 6? With the others, you’d probably be aware thatyou’d contracted them, but is that the case with the others?Thanks,

[Guest guest]

Someone just posted a great website here about HHV6 a few days ago:

http://www.plazamedicine.com/hhv6/hhv6_1.html

My understanding is most of us carry it and it lies dormant until something triggers it to make it damaging.

A really interesting read is "The Virus Within" which is about HHV6. There are researchers who feel that CFS, Fibyromalgia, and many other diseases (including Schizophrenia) are caused by HHV6 gone bad.

HV6

elsass@... celsass1

Tue Jun 6, 2006 2:11 pm (PST)

Just curious about the various strains of Herpes virus. I know that thefirst 2 are responsible for genital herpes and cold sore, but what about theother strains, such as HV 6? With the others, you’d probably be aware thatyou’d contracted them, but is that the case with the others?Thanks,

[Guest guest]

As I told you in my private message to you, you do NOT get HHV-6 from

ticks. Many lyme patients are being tested positive for HHV-6. Its a

virus that almost everyone on the planet has, but usually does not

come out. Lyme patients immune systems are sometimes so weakened the

virus rears its ugly head. I wanted to share with the lyme patients in

the group who have HHV-6 and is not or does not want to be treated

with anti virals, that I got information from a lyme patient today a

homeopathic treatment he used for his HHV-6 and it worked well for

him. He uses a product called Transfer Factor, Lauricidin, and

L-lysine. My llmd also suggested for my HHV-6 in conjunction with anti

virals I am currently taking, to use high doses, 1000 mg of Vit-C all

day about 1-2 hours apart. The first week on this treatment was pure

hell. But yesterday I had a break through and I am feeling much

better. Knock on wood!

>

> Is HHV6 a coinfection that you can get from the Ticks? I had a DNA

> blood test and tested positive for HHV6 but I thought this was common

> in most peoples DNA?

>

> thanks

>

> Shift

>

[Guest guest]

Thnaks I use NT Factor so I hope it is helping my immune

system.

SHift

>

>

>Is HHV6 a coinfection that you can get from the Ticks? I had a DNA

> >blood test and tested positive for HHV6 but I thought this was

common

> >in most peoples DNA?

> >

> >thanks

> >

> >Shift

> >

> >

>

>

>

[Guest guest]

Shift

I noted that you have transposed letters in the word " thanks " . I was

wondering if many other folks reading this list have this problem. I

think on Burruscano list of symptoms, this appears as mild dyslexia.

I certainly have this problem and although other symptoms seem to have

subsided, this one is still with me. Thank God for spell checker.

W

Baltimore

highlandave98 wrote:

>Thnaks I use NT Factor so I hope it is helping my immune

>system.

>

>SHift---

>

<snip>

[Guest guest]

I don't know where it came from but I have it too and was taking

Valtrex for about a year at great expense......I don't know if I've

killed it off because my doctor in FL won't retest me but I decided

to stop taking it cause I still don't feel any better so who cares?

I cna tell you that while on the Valotrex I had breakouts all over

my body which I thought meant it was doing SOMETHING for my $500+ a

month

>

> Is HHV6 a coinfection that you can get from the Ticks? I had a DNA

> blood test and tested positive for HHV6 but I thought this was

common

> in most peoples DNA?

>

> thanks

>

> Shift

>

[Guest guest]

HHV6 is a virus, they don't die, but can become dormant. Transfer factor

H6 can help your immune system to deal with it. Valtrex is used mainly for

HSV2.

At 06:55 AM 10/8/2006, you wrote:

>I don't know where it came from but I have it too and was taking

>Valtrex for about a year at great expense......I don't know if I've

>killed it off because my doctor in FL won't retest me but I decided

>to stop taking it cause I still don't feel any better so who cares?

>I cna tell you that while on the Valotrex I had breakouts all over

>my body which I thought meant it was doing SOMETHING for my $500+ a

>month

>

>

>

> >

> > Is HHV6 a coinfection that you can get from the Ticks? I had a DNA

> > blood test and tested positive for HHV6 but I thought this was

>common

> > in most peoples DNA?

> >

> > thanks

> >

> > Shift

> >

>

>

[Guest guest]

My llmd explained that almost everyone on the planet has the HHV6

virus, but it remains dormet all of there lives unless they get an

illness that suppresses the immune system enough that it comes out and

rears its ugly head.

, my LLMD has me on Valcyte for HHV6. She explained I could herx

on it, and that it could be intense. Maybe the break out you had was a

herx? Maybe the valtrex was doing its job? I know how lyme can be such

a head game. We are always questioning ourselves, " is this a herx, is

that a herx? " I still feel really cruddy and she wants to keep me on

it for 2 more months. A year is a long time to be on it and maybe you

got it back into dormacy. You can have the blood test to check, there

would be your answer.

Wishing you WELL!.......Lizzie

> >

> > Is HHV6 a coinfection that you can get from the Ticks? I had a DNA

> > blood test and tested positive for HHV6 but I thought this was

> common

> > in most peoples DNA?

> >

> > thanks

> >

> > Shift

> >

>

[Guest guest]

my name is Ferrer and I live in Peru also. Can you contact me:

cferrerb@...??

 

De: Kristy Nardini <knardini@...>

Para:

Enviado: sábado, marzo 5, 2011 8:00 P.M.

Asunto: Re: Re: HHV6

 

Were parasites ruled out?

Kristy

--

Thumb typed!

aliciacuevaz <aliciacuevaz@...> wrote:

> Thank you so much for describing your daughter's improvements. It is just

amazing that at a level of 740 she couldn't walk up the stairs

TO CLARIFY, IN THIS MOMENT SHE WAS SICK FROM STOMAGE, FROM THE FLU ...

EVERYTHING WAS DISREGULATED. THE VIRUS TOO.

SO, THIS KIND OF SITUATIONS MUST NOT HAPPEN.

DR. GOLDBERG, EXPLAIN ME, SHE WOULD NEVER HAVE A FLU MORE THAN 1 MONTH, THIS IS

SO BAD FOR THE IMMUNE SYSTEM, AND THAT A VIRAL FLU NEVER LASTS MORE THAN 1 WEEK,

AFTER THAT THE PEDIATRICIAN MUST SSEE IF SHE NEED AN ANTIBIOTIC OR SOMETHING

LIKE THAT.

THAT IS WHY IN MY OPINION IS IMPORTANT TO FOLLOW HIS INSTRUCTIONS, IN TIME THE

GIRL IMPROVED IN THE GENERAL.

.. Poor baby. So glad you were able to get her help. What country do you live in?

>

I LIVE IN PERU

> Thank you!

> Sheryl

>

> Sent from my iPhone

>

> On Mar 5, 2011, at 11:10 AM, " aliciacuevaz " <aliciacuevaz@...> wrote:

>

> > 1:10 is the normal range.

> > This days she looks healthy, no cold sores, no stye, no FLU.

> > This pair of months she is been fine, happy, enjoying the life. I guess it

must be related to her improve in the virus.

> > In my country we are in summer, so it also helps.

> >

> > For her HHV6 was in 320, 160,and 740 along the years.

> > When she was in 740 we got a very bad moment for a few days, she got

migraine, she cannot walk up the stairs, nor open the door. Then slowly thing

got better.

> >

> > I realized that there were some foods that were not helping, as lemon,

artichocke, lentils, she is very reactive, and for me was very difficult to find

all the problematic foods; i guess finally the diet is fine; this is very

important and helps a lot.

> >

> > Her improvements were not drastic, only once when we used for the first time

Famvir, 15 days after she began talking, not as a regular girl, but there

appeared language.

> > It was in the begining, we got up and down, but in average always progress.

> >

> > Dr. G won´t wait for the virus to be down, he gives some other meds as

the SSRI´s, tenex... and this helps in the meantime.

> >

> > I cannot say that with this virus in 10 she is a normal girl, but she is on

her way. Improving slowly.

> >

> > So, the best thing that you are doing is to visit the doctor.

> >

> >

> > >

> > > > I want to share, my girl finally got HHV6 1:10.

> > > > She was dealing with this for all her life.

> > > > Once i thought she would always live with this.

> > > > So, once again Dr. G was right. it is a matter of time and patience and

follow all the recomendations as strictly as possible.

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

My son, too, recently reached normal level for HHV6 (I don’t have the exact

numbers with me) for the first time. He has been on the protocol for 5.5 years.

Even before we got the results, I could tell. More language, more clarity, great

behavior. It’s interesting that he is at the most sensitive to foods right

now, which Dr. G explained to me is common when the virus(es) finally get under

control. We’ve recently had to take him off all grains and he’s on a very,

very low carb diet for now.

Kristy Nardini

Tazzini Stainless Steel Bottles

www.tazzini.com

kristy@...

<http://www.facebook.com/tazzinicompany> Find us on Facebook!

<http://www.twitter.com/tazzini> Follow us on Twitter!

From: [mailto: ] On Behalf Of Sheryl

Sent: Saturday, March 05, 2011 9:49 AM

Subject: Re: HHV6

That's fantastic, ! My son has high HHV6 also. I am getting my paperwork

in order to see Dr Goldberg. Is 1:10 normal or just lower? And what improvements

have you seen from this viral improvement? More language? Clarity? Behavior?

Thanks!

Sheryl

Sent from my iPhone

On Mar 5, 2011, at 6:46 AM, " aliciacuevaz " <aliciacuevaz@...

<mailto:aliciacuevaz%40> > wrote:

> I want to share, my girl finally got HHV6 1:10.

> She was dealing with this for all her life.

> Once i thought she would always live with this.

> So, once again Dr. G was right. it is a matter of time and patience and follow

all the recomendations as strictly as possible.

>

>

[Guest guest]

It is interesting that my experience is opposite.

 

My son has been on for 9 months. His HHV6 level reports always were in

normal range (<1:10) before the last blood test (he had 4 results in the

range). This time, the newest result shows that his HHV6 level is 1:160. What

does it mean? Is 1:160 extreme high?

 

He has been on Valtrex for 9 months, Nizoral for 8 months, and Celexa for 3

months.

 

Why was his HHV6 level in normal range before he started this protocol,

even two months ago but now is too high?

 

Please share if you have the similar experience.

 

Any advice will be greatly appreciated!

 

Xiao

 

> I want to share, my girl finally got HHV6 1:10.

> She was dealing with this for all her life.

> Once i thought she would always live with this.

> So, once again Dr. G was right. it is a matter of time and patience and follow

all the recomendations as strictly as possible.

>

>

[Guest guest]

Xiao,

This was our experience as well. It took 9 months for the HHV6 titers to go

above 1:10. We were told that the antiviral brought the HHV6 out of hiding.

HTH,

Martha

On Mon, Mar 7, 2011 at 12:32 AM, xiao xu <xh16882003@...> wrote:

>

>

> It is interesting that my experience is opposite.

>

> My son has been on for 9 months. His HHV6 level reports always were in

> normal range (<1:10) before the last blood test (he had 4 results in the

> range). This time, the newest result shows that his HHV6 level is 1:160.

> What does it mean? Is 1:160 extreme high?

>

> He has been on Valtrex for 9 months, Nizoral for 8 months, and Celexa for 3

> months.

>

> Why was his HHV6 level in normal range before he started this protocol,

> even two months ago but now is too high?

>

> Please share if you have the similar experience.

>

> Any advice will be greatly appreciated!

>

> Xiao

>

>

>

> > I want to share, my girl finally got HHV6 1:10.

> > She was dealing with this for all her life.

> > Once i thought she would always live with this.

> > So, once again Dr. G was right. it is a matter of time and patience and

> follow all the recomendations as strictly as possible.

> >

> >

>

>

[Guest guest]

Two of my sons had high HHV6 levels before we started the protocol. Noah did

not. After a couple of months on antivirals, his HHV6 titers went through the

roof. This is my understanding of how this works (please anyone correct me if

I'm wrong): HHV6 is somewhat a stealth virus. It doesn't want to live off the

host and does that by hiding out in body tissues, especially the brain,

therefore, it is often difficult to detect in the blood.

HTH,

Robyn

>

> > I want to share, my girl finally got HHV6 1:10.

> > She was dealing with this for all her life.

> > Once i thought she would always live with this.

> > So, once again Dr. G was right. it is a matter of time and patience and

> follow all the recomendations as strictly as possible.

> >

> >

>

>

[Guest guest]

Do you know the reason Dr. G says its common to have increased sensitivity to

foods when you finally get the virus under control?

I know we seemed to experience increased sensitivity to foods when changing

diets...and I think it was because it wasn't constant exposure to allergens...

so once they are out of body more... the reaction is more intense. If the

exposure is constant the immune system (autoimmune) can't maintain as high of

levels of activation. But I wonder what would account for it when virus is

under control.

I'm not looking forward to my child being more reactive to food. I don't want

to take out all grains completely.

[Guest guest]

I was wondering when your children (and yourselves) are getting your HHV6 levels

checked, are they looking for both HHV6A and HHV6B? Are you also getting other

HHV levels checked (HHV7, HHV8, etc.). My son is taking lamictal for seizures

and I read a while back on the HHV website that lamictal fights against HHV6a

but not HHV6B (or maybe I have that backwards).

Thank you,

Jill

p.s. I may have asked this before but I have a short term memory.

[Guest guest]

Hi, Jill,

Your son is on Dr. G's protocol, right? (We haven't started yet.) My son, age

9, also has seizures. I was wondering how long you have been on the protocol

and if your son's seizures have improved/gone away. Or did you have control of

them with Lamictal?

And if anyone else's children have had seizures and you are on the protocol, I'd

love to have you weigh in, as well.

I am about half way through Dr. G's work and still have to compile a lot of

paperwork before I can submit my son's stuff for an appt. with Dr. G.

Thanks for your help.

Sheryl

________________________________

From: sjillboyer <sjillboyer@...>

Sent: Wed, March 9, 2011 4:38:59 AM

Subject: HHV6

I was wondering when your children (and yourselves) are getting your HHV6 levels

checked, are they looking for both HHV6A and HHV6B? Are you also getting other

HHV levels checked (HHV7, HHV8, etc.). My son is taking lamictal for seizures

and I read a while back on the HHV website that lamictal fights against HHV6a

but not HHV6B (or maybe I have that backwards).

Thank you,

Jill

p.s. I may have asked this before but I have a short term memory.