HHV6

[Guest guest]

Beth, they haven't yet published on HHV-6A in CFIDS, but are getting the data

together and will be putting in for publication very soon.

Gail

[Guest guest]

Hi Patti,

snip>I developed CFIDS/MCS/FM after

>receiving the ton of vaccines I was required to

>get for the Gulf War. My unit was supposed to

>go, so we got our vaccines and our desert BDUs

>but suddenly our orders changed. I got sick

>the day after the vaccines and have stayed that way.<

Relay makes you stop and think doesn't it? What exactly was in those shots?

And to have CFIDS/MCS/FM after the vaccines. You definitely have sacrificed

A LOT for your country!!!

Judi

[Guest guest]

Patti said;

>BTW - for those of you who have not read up much on GWS, it *IS*

transmissible and there are many who have it and never went near

the middle east (esp family members).<

Patti,

I am really beginning to wonder about CFIDS. Who knows what we really have?

I was thinking about that tonight as I was playing with my grand-daughters.

I sure wouldn't want them to get what I have. I've been concerned about my

husband too. What is a person to do though?

Just a thought. A scary thought!

Judi

Re: HHV6

>From: " M. Skari " <pskari@...>

>

>

>> snip>I developed CFIDS/MCS/FM after

>> >receiving the ton of vaccines I was required to

>> >get for the Gulf War. My unit was supposed to

>> >go, so we got our vaccines and our desert BDUs

>> >but suddenly our orders changed. I got sick

>> >the day after the vaccines and have stayed that way.<

>>

>> Relay makes you stop and think doesn't it? What exactly was in those

shots?

>

>>From listening to Joyce Reilly (sp?) and Dr. Horowitz, I think I have a

>pretty good idea of what was in some of those shots - and its really

>scary stuff!!! Very likely there was an experimental AIDS vaccine,

>an experimental anthrax vaccine, squalene and quite a few other very

>diabolical things.

>

>> And to have CFIDS/MCS/FM after the vaccines. You definitely have

sacrificed

>> A LOT for your country!!!

>

>You know, the really stupid thing is that before I joined the national

>guard I *KNEW* that the US govt had experimented on troops in the past,

>but silly, stupid me, I thought we were more *enlightened* now. HA!

>I thought, after all, even animal testing has been severly curtailed.

>Surely, if they think its inhumane to experiment on animals, we

>would never experiment on humans, especially without their knowledge.

>How wrong I was, and how much I'm paying for my naivete.

>

>Ever since the gulf war I thougth it was so very strange how we knew

>for months that we were going to be mobilized to go overseas. We

>were told we were definitely going. We got our shots, our desert

>uniforms and were told to get ready because when the orders came in

>we would only have 24 hours to report. I was in the office the day

>our orders were supposed to come in. Everyone was tense. Every

>time the phone rang we jumped. Finally the call came in that orders

>had changed and that we definitely would never be called up for the

>gulf war. We were all mystified. We were told that we would not even

>be on standby for later, we were not going at all. Period. We all thought

>that was very strange, but we turned in our uniforms and that was it.

>

>After listening to Joyce and dr. Horowitz I've been beginning to think

>that perhaps our supposed mobilization was only a ruse to get a bunch more

>people to experiment on. I am *SOOOOOOOOOOO* cynical!!!

>

>BTW - for those of you who have not read up much on GWS, it *IS*

>transmissible and there are many who have it and never went near

>the middle east (esp family members).

>

>Patti

>--

>

>

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

>Did you know that knowledge is power?

>http://www.ONElist.com

>Join a new ONElist e-mail community and strengthen your mind!

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

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

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discussed here, please consult your doctor.

>

[Guest guest]

In a message dated 4/23/99 4:26:44 PM Eastern Daylight Time,

pskari@... writes:

<< What and where is

> the lab?? >>

Advanced Research at 25 E. Loop Rd., Sony Brook, NY....the CEO is MerriBeth

.

[Guest guest]

> snip>I developed CFIDS/MCS/FM after

> >receiving the ton of vaccines I was required to

> >get for the Gulf War. My unit was supposed to

> >go, so we got our vaccines and our desert BDUs

> >but suddenly our orders changed. I got sick

> >the day after the vaccines and have stayed that way.<

>

> Relay makes you stop and think doesn't it? What exactly was in those shots?

From listening to Joyce Reilly (sp?) and Dr. Horowitz, I think I have a

pretty good idea of what was in some of those shots - and its really

scary stuff!!! Very likely there was an experimental AIDS vaccine,

an experimental anthrax vaccine, squalene and quite a few other very

diabolical things.

> And to have CFIDS/MCS/FM after the vaccines. You definitely have sacrificed

> A LOT for your country!!!

You know, the really stupid thing is that before I joined the national

guard I *KNEW* that the US govt had experimented on troops in the past,

but silly, stupid me, I thought we were more *enlightened* now. HA!

I thought, after all, even animal testing has been severly curtailed.

Surely, if they think its inhumane to experiment on animals, we

would never experiment on humans, especially without their knowledge.

How wrong I was, and how much I'm paying for my naivete.

Ever since the gulf war I thougth it was so very strange how we knew

for months that we were going to be mobilized to go overseas. We

were told we were definitely going. We got our shots, our desert

uniforms and were told to get ready because when the orders came in

we would only have 24 hours to report. I was in the office the day

our orders were supposed to come in. Everyone was tense. Every

time the phone rang we jumped. Finally the call came in that orders

had changed and that we definitely would never be called up for the

gulf war. We were all mystified. We were told that we would not even

be on standby for later, we were not going at all. Period. We all thought

that was very strange, but we turned in our uniforms and that was it.

After listening to Joyce and dr. Horowitz I've been beginning to think

that perhaps our supposed mobilization was only a ruse to get a bunch more

people to experiment on. I am *SOOOOOOOOOOO* cynical!!!

BTW - for those of you who have not read up much on GWS, it *IS*

transmissible and there are many who have it and never went near

the middle east (esp family members).

Patti

--

[Guest guest]

Most of the population will test positive for *antibodies* to hhv6. The new

finding, which is highly unusual, is that a sizeable percentage of pwcs test

positive for the *antigen* of hhv6. In other words, they test positive for

having a chronic, *active* infection. This is extremely unusual, and before

they started finding that some people with cfids (and m.s.) had these active

hhv6 infections, the only people know to have these active infections were

bone marrow transplant recipients who were on highly immunosuppressive drugs

and aids patients.

Currently, commercially (non-commercially, or for research only, there

may be others), I believe there is only one lab in the country testing pwcs

for active hhv6 (well, there may be 2, because someone posted about this lab

letting a second lab in NY use their patented method for culturing hhv6 in

the blood).

The lab that does rapid culture blood tests for hhv6 is HerpesVirus

Diagnostics. As far as I am aware, they are a highly reputable lab. They

have a website which is most informative hhv6.com I recommend it.

Hhv6 infection is cyclical, with pwcs being most likely to test for it

the sicker they are currently feeling. Apparently, due to this cyclical

nature, the more times pwcs are tested for hhv6, the more likely they are to

test positive for it. The statistics are something like, 30% test positive

on first test, 40% on second test, and it keeps climbing (though it does

level off). I believe they think about 60% of pwcs have this active chronic

infection, but I might be wrong on this one.

[Guest guest]

What does TX mean?

Diggins/Jarmolow wrote:

>

> From: Diggins/Jarmolow <talkcr7@...>

>

> Hello everyone,

>

> What I am understanding about HHV6 is that it is like all the herpes

> viruses, including genital herpes, IE, it will stay dormant in the body

> forever but can become active either occasionally or often in some people.

> I have tested high for current active infection, and then negative in 2

> tests months later. I think this is because my body has fought it back into

> dormancy. The day I tested high i also had a slight fever So I don't know

> how to understand the multiple testing, except to determine if one is

> having a fairly constant active infection and might benefit from antiviral

> TX. If I test active in the new Herpesdiagnostics antigen test, my doctor

> thinks I should then try some TX. I think it is a good sign that my body

> fought it back into dormancy in the meantime. To me that means I should

> just keep trying to strengthen my own bodies immunity and not add

> antivirals. I know of someone who is healthy who often tests positive for

> current active infection -Igm. Are you saying, Gail I believe, that it can

> be active in the spinal fluid while testing inactive in the blood? I know

> genital herpes hides out in the spinal nerves when it is dormant.

>

> It sure is confusing and seems we are all just guessing at this point.

>

> Beth

>

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

> ONElist: where real people with real interests get connected.

>

> Join today!

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

> 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]

In a message dated 5/3/99 4:07:14 PM Eastern Daylight Time,

talkcr7@... writes:

<< Are you saying, Gail I believe, that it can

be active in the spinal fluid while testing inactive in the blood? I know

genital herpes hides out in the spinal nerves when it is dormant. >>

Beth, they're finding both kinds. Many patients have it dormant which then

can be reactivated, but others have it active and it stays active. They're

probably the most severe patients. It doesn't really hide in the spinal

fluid, but it's a better place to find it, since it rarely leaves the spine

but often goes in and out of the blood.

[Guest guest]

In a message dated 5/3/99 5:24:44 PM Eastern Daylight Time, GAILRONDA@...

writes:

<< Are you saying, Gail I believe, that it can

be active in the spinal fluid while testing inactive in the blood? I know

genital herpes hides out in the spinal nerves when it is dormant. >> >>

That's what they've found. Not good news, but better to be a known entity

than unknown so they can start working on what to do about it.

[Guest guest]

In a message dated 2/2/00 10:24:22 PM Eastern Standard Time,

moores@... writes:

<< I put hhv6 in my search engine & came up with hundreds of sites here are

just a few of them >>

Steve, none of these will tell you the whole story about HHV6. That's what's

in the book by Nick Regush about to be released.

Gail

[Guest guest]

Gail,

I'm extremely interested to know what Nick Regush postulates aboutHHV-6

in his upcoming book, Virus Within: The Coming Epidemic. I couldn't find

a review of it at the online bookstores or through Sherlock's broad search.

I've been highly interested in Neenyah Ostrum's work on the correlations

between HIV and CFIDS (major one being HHV-6 right?) According to

Ostrum's work we could easily be looking at some CFIDS cases,

particularly with serious neurologic involvement and ME, being caused by

simple saliva exposure to HHV-6.

And then there's the matter of those pesky cases of AIDS (or was known

as ARC awhile back, too) where no HIV is present but folks are very sick

and are HHV-6 and sometimes CMV positive. Scary for the CDC to think of

a devastating epidemic by a virus easily contracted through body fluids

like saliva, wherein the virus attacks the immune system, creating

immunosuppressed patients with all kinds of opportunistic infections

which follow. AND, the virus also reactivates periodically producing

progressive neurological damage and more opportunities to spread the illness.

HHV-6 is now being classified as an emerging pathogen by the EID

(emerging infectious diseases) department through CDC or is it the

Center for Infectious Diseases (memory blank, sorry).

[Guest guest]

Jerry C.,

From Amazon:

Book Description

A nonfiction medical thriller about the little-known public enemy that is

quickly becoming a hidden threat to health around the world.

The Virus Within is the product of Regush's pioneering

investigation into Human Herpes Virus 6 (HHV-6): the mysterious new epidemic

that has already done serious damage to public health. The first medical

reporter to take a comprehensive look at this horrifying and pervasive

disease, Regush presents his findings in the form of a medical thriller,

following the trail of the research detectives who have crossed disciplines

to piece the story together. How can HHV-6, a common virus which purportedly

goes to sleep harmlessly in the body after initial infection in almost

everyone, awaken to trigger or contribute to serious illness or even death?

How can this chameleon suddenly begin to attack nerves, resulting in a

variety of brain and nervous system diseases, including multiple sclerosis?

Why is HHV-6 the key to understanding AIDS and chronic fatigue syndrome? In

The Virus Within, Regush offers cutting-edge scientific information in an

accessible, stimulating format-stunning research with profound health

implications for everyone.

About the Author

Regush is an award-winning and Emmy-nominated investigative medical

and science journalist at ABC News, where he produces segments for World

News Tonight with Jennings. He also writes the popular " Second

Opinion " column on health and medical news for abcnews.com. Regush was a

reporter for the Montreal Gazette for twelve years, and has written in-depth

pieces for many magazines in the United States and Canada, including Mother

and Equinox. He lives in New York City and Montreal, Canada.

Jerry G.

----- Original Message -----

From: Jerry <sheri.clark@...>

> Gail,

>

> I'm extremely interested to know what Nick Regush postulates aboutHHV-6

> in his upcoming book, Virus Within: The Coming Epidemic. I couldn't find

> a review of it at the online bookstores or through Sherlock's broad

search.

>

[Guest guest]

Jerry G,

THANKS! You know my brain has this gaping hole, and you just triggered

my memory that I preordered that book a month ago. When I went to Amazon

UK site, I remembered I had some book not yet published on order.

Sheri

[Guest guest]

I asked a question of Regush that didn't get answered but am wondering

if anyone knows the answer. Since there is no treatment for HHV6, should

PWCs get tested for it anyway? If yes, what is the point? It seems like

testing should wait until a treatment is available, otherwise one doesn't know

if the HHV6 is the problem or it is something else and HHV6 is just 'there'.

[Guest guest]

Hi Mike,

There are treatments being researched for HHV-6A, I guess you don't

subscribe to the National Forum, a CFS publication from www.ncf-net.org ,

You can read some the articles on hhv6 under the Newsletter 2000 section

of the web site. Lidakol is the new anti-viral, but not FDA approved yet.

Alan Cocchetto mentioned alternative meds like Phyllanthus Amarus/Niruri an

herb.

I would get the test to at least know if you are positive and to see if the

whey protein is keeping your test negative.

Remember, Dr. Cheney wants to see if after 3 months on Immunopro if CFS

patients are negative. He does pre & post testing on HHV6.

Al

Re: HHV6

> From: mcamp10139@...

>

> I asked a question of Regush that didn't get answered but am wondering

> if anyone knows the answer. Since there is no treatment for HHV6, should

> PWCs get tested for it anyway? If yes, what is the point? It seems like

> testing should wait until a treatment is available, otherwise one doesn't

know

> if the HHV6 is the problem or it is something else and HHV6 is just

'there'.

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates

> as low as 0.0% Intro APR and no hidden fees.

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

>

> 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]

I can think of a possible point to it. The way I understand it, HHV-6 is

always there dormant, but becomes an active infection in PWCs. So I wonder

if it might be the case that if we ever, Universe willing, get better, one

of the indications of our improved health might be that the HHV-6 goes

dormant again. I'm assuming that the test only detects an active HHV-6

infection. In this case I would want to know whether I have it, and then

re-test when I feel that I am recovering and see if it is still there. Also

if a treatment is found then we would already know that we have it and could

start the treatment right away.

Abra

>From: mcamp10139@...

>Reply-onelist

>onelist

>Subject: Re: HHV6

>Date: Mon, 20 Mar 2000 19:14:07 EST

>

>I asked a question of Regush that didn't get answered but am wondering

>if anyone knows the answer. Since there is no treatment for HHV6, should

>PWCs get tested for it anyway? If yes, what is the point? It seems like

>testing should wait until a treatment is available, otherwise one doesn't

>know

>if the HHV6 is the problem or it is something else and HHV6 is just

>'there'.

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

I recall having the general HHV6 blood test, and it came back negative. Does

anyone know if a PCR test exists and if does, it is helpful/worthwhile?

Jim

[Guest guest]

Jim:

It wasn't until my THIRD HHV6 test that it came back positive. My doctor

explained this as being the test couldn't detect low levels of HHV6. That's

why he ran it three times. He also told me the lab in WI is working on

making the test more sensitive in order to pick up lower levels of HHV6.

Hope that helps.

Debbie D.

[Guest guest]

So, could they identify which strain of HHV6? Did you have any blood

tests for hhv6? If so, what did the blood tests indicate?

My doctor told me that HHV6 is nasty and that even though Magic

has the hiv virus...at least he doesn't have hhv6!!!!

Did they identify any other viruses from your spinal fluid?

> hey peoples,

>

> Listen I was looking at the statement that Dr. Ablashis Washtington

DC lab

> printed for me about my spinal tap done at Dr. 's office.

It says

> that " ACTIVE " HHV-6 is detected in my cerebrospinal fluid.

>

> Now, mind you, the infectious disease specialist at UCSF shook his

head and

> refused to give it any credence, and refused to " treat " it.

>

> But what I am trying to understand is, how can Dr. Ablashi know

that it is

> ACTIVE virus, versus INACTIVE virus? And if the difference is

noticeable, why

> would an infectious disease specialist poo-poo it?

>

> By the way, does anyone here think that having active HHV-6

detected in my

> spinal fluid is significant? Most of the studies I have read are

not giving

> me much of a clue.

>

> Any thoughts?

>

>

[Guest guest]

Hi ,

I would ask your questions on HHV-6 by email to the HHV-6 researchers at

Wisconsin Viral Research Labs, website: www.hhv6.com

Al

HHV6

> hey peoples,

>

> Listen I was looking at the statement that Dr. Ablashis Washtington DC lab

> printed for me about my spinal tap done at Dr. 's office. It says

> that " ACTIVE " HHV-6 is detected in my cerebrospinal fluid.

>

> Now, mind you, the infectious disease specialist at UCSF shook his head

and

> refused to give it any credence, and refused to " treat " it.

>

> But what I am trying to understand is, how can Dr. Ablashi know that it is

> ACTIVE virus, versus INACTIVE virus? And if the difference is noticeable,

why

> would an infectious disease specialist poo-poo it?

>

> By the way, does anyone here think that having active HHV-6 detected in my

> spinal fluid is significant? Most of the studies I have read are not

giving

> me much of a clue.

>

> Any thoughts?

>

>

>

>

[Guest guest]

<<< By the way, does anyone here think that having active HHV-6 detected

in my spinal fluid is significant? >>>

yes, it's very significant. the doc that told you most of the

population is infected with hhv6 is right - but it's usually hhv6B that

has gone dormant - not ACTIVE hhv6A.

the medical " mainstream " still has a problem with it, because the

government ignores it. patrick, have you found a copy of " Virus Within:

A Coming Epidemic " yet?

~~~~~~~~~~~~~~~~~~~~~~~~~

" Would they have found nothing, unless nothing was what they wanted to

find? " - Agent Dales, X-Files

@}{~{<<~~~~~~~~~~~~~~~~~~~~

@}{~{<<~~~~~~~~~~~~~~~~~~~~

debbie s. - dlsherman@...

[Guest guest]

Dear Cindi,

Most accurate test recommended for HV-6 is the blood culture done by Drs.

Knox and Carrigan in Wisconsin.

[Guest guest]

I'm trying to figure out this HHV6 testing as well. My doctor said get a

PCR test. But another lab says you need PCR of cerebrospinal fluid to

detect active HHV6. Otherwise you are only detecting HHV6 and not whether

it is an active or inactive infection. Or they say you need to culture

HHV6 and see if it grows.

Hope someone out there has this all figured out and can explain.

Cindi

patrickmm4@...

07/07/00 07:48 PM

Please respond to

egroups

cc:

Subject: HHV6

hey peoples,

Listen I was looking at the statement that Dr. Ablashis Washtington DC lab

printed for me about my spinal tap done at Dr. 's office. It says

that " ACTIVE " HHV-6 is detected in my cerebrospinal fluid.

Now, mind you, the infectious disease specialist at UCSF shook his head

and

refused to give it any credence, and refused to " treat " it.

But what I am trying to understand is, how can Dr. Ablashi know that it is

ACTIVE virus, versus INACTIVE virus? And if the difference is noticeable,

why

would an infectious disease specialist poo-poo it?

By the way, does anyone here think that having active HHV-6 detected in my

spinal fluid is significant? Most of the studies I have read are not

giving

me much of a clue.

Any thoughts?

------------------------------------------------------------------------

Remember four years of good friends, bad clothes, explosive chemistry

experiments.

1/5532/5/_/531724/_/963024518/

------------------------------------------------------------------------

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]

Hi,

The lab Brewer uses is working on a PCR test for HHV-6, that will be

able to quantify HHV-6.

This is very important in that instead of knowing whether it is just

active or not, you will be able to say how much. It will give greater

credence to the whole HHV-6 ball of wax.

The test should be available " in the near future. " Quoted from Dr.

Fitz.

Newton

> I'm trying to figure out this HHV6 testing as well. My doctor said

get a

> PCR test. But another lab says you need PCR of cerebrospinal fluid

to

> detect active HHV6. Otherwise you are only detecting HHV6 and not

whether

> it is an active or inactive infection. Or they say you need to

culture

> HHV6 and see if it grows.

>

> Hope someone out there has this all figured out and can explain.

>

> Cindi

>

>

>

>

>

> patrickmm4@a...

> 07/07/00 07:48 PM

> Please respond to

>

>

> egroups

> cc:

> Subject: HHV6

>

> hey peoples,

>

> Listen I was looking at the statement that Dr. Ablashis Washtington

DC lab

>

> printed for me about my spinal tap done at Dr. 's office.

It says

> that " ACTIVE " HHV-6 is detected in my cerebrospinal fluid.

>

> Now, mind you, the infectious disease specialist at UCSF shook his

head

> and

> refused to give it any credence, and refused to " treat " it.

>

> But what I am trying to understand is, how can Dr. Ablashi know

that it is

>

> ACTIVE virus, versus INACTIVE virus? And if the difference is

noticeable,

> why

> would an infectious disease specialist poo-poo it?

>

> By the way, does anyone here think that having active HHV-6

detected in my

>

> spinal fluid is significant? Most of the studies I have read are

not

> giving

> me much of a clue.

>

> Any thoughts?

>

>

>

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

----

> Remember four years of good friends, bad clothes, explosive

chemistry

> experiments.

> 1/5532/5/_/531724/_/963024518/

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

----

>

> 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]

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