HHV-6

[Guest guest]

Well, a lot of us have very different symptoms...so what are your

symptoms like? JL

C3814@... wrote:

>

> From: C3814@...

>

> No symptoms.....just part of the CFIDS illness. Carole

>

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

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

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discussed here, please consult your doctor.

[Guest guest]

No symptoms.....just part of the CFIDS illness. Carole

[Guest guest]

Hi! Tested positive for active hhv6. Symptoms are fevers, swollen, painful

lymph nodes, extreme lack of stamina and sleep disorder. However, know of

another person who tested positive whose symptoms are dizziness and fatigue

and maybe cognitive problems only. (who would write more but is

feeling pretty horrid!)

[Guest guest]

<snip>

> I'm interested in this because our daughter was negative for hhv-6, and yet

> I know that she is sicker than anyone on this list (and other lists, too).

> Somehow I just can't believe that she's not infected with this virus.

My understanding is that this virus is very elusive. I don't think

there's enough evidence to say that someone tested 4 negs and

1 pos is healthier than someone whose tested 4 pos and 1 neg.

I don't think that's true.

After reading Mark Konlee's newsletters (http://www.execpc.com/~keephope/)

I became convinced that I had all the symptoms of someone with hhv-6

so I asked my doc to be tested. Its a long story, but I got my blood

drawn on two different days (less than a week apart) and it got

sent to two different labs (don't remember which ones). One came

back negative and one came back positive.

People on this list have posted that many people test negative on

the blood test and positive on the spinal fluid test. If you

read Mark's newsletters you can get lots of info on hhv-6 and

determine if you want repeated tests to nail it down (some don't

test positive until the 5th or 6th test - they undoubtedly

had hhv-6 the whole time but the test is probably not sensitive

enough)

There's alot we don't know about this virus. There seems to be

lots of evidence that it was genetically engineered. Those

of us that have it may have been tested on without our knowledge.

Patti

--

[Guest guest]

In a message dated 9/26/00 11:25:51 AM Pacific Daylight Time,

catherine_holt@... writes:

<< The lab you are thinking of is Viracor. It is the one recommended by Dr.

Berg.

I just had the Rapid Culture test done there, and to my astonishment came up

negative. Maybe this is why I don't have some of the CFIDS symptoms, like

muscle pain?

Anyone know how definitive that test is?

>>

That lab name does not sound familiar. Is that the lab that test both HHV-6A

and HHV-6B? I thought there is one in Wisconsin that test for these? Maybe

I am wrong. PS. I just had the HEMEX test done and it came back

positive...more then two results of the test were high. Anyone know which

direction to take now? My doc just wants to put me on Heperin but isn't

there other things I should do first, like get tested for HHV-6 and mycos? I

will check kens site but if anyone can add to this it would be very much

appreciated.

[Guest guest]

This is the correct lab in MKE. They have changed their name.

Carole

[Guest guest]

> I posted this the other day but did not get an answer. Anyone know what

is

> the best lab to get HHV-6a and HHV-Vb tested? I think i remember its

> someplace in Wisconsin but I forget the name of it. Thanks,

The lab you are thinking of is Viracor. It is the one recommended by Dr.

Berg.

I just had the Rapid Culture test done there, and to my astonishment came up

negative. Maybe this is why I don't have some of the CFIDS symptoms, like

muscle pain?

Anyone know how definitive that test is?

_________________________________________________________

[Guest guest]

In a message dated 9/26/00 5:11:32 PM Pacific Daylight Time, bullocks@...

writes:

<< , I would definitely get tested for HHV6 and mycoplasma(s). Steve

Bullock >>

Yes, I am. Thank you everyone for the lab info on who test for HHV-6a and

HHV-6b.

[Guest guest]

In a message dated 9/26/00 4:00:45 PM Pacific Daylight Time,

dlsherman@... writes:

<< hi , i believe the rapid culture has at least a 50% false

negative rate. they are going to have another test available soon, with

no more false neg. the virus hides and is very difficult to detect in

blood. this doesn't happen with spinal fluid. >>

O' darn. I didn't know the test for HHV-6 wasn't good either. Does the lab

in Wisconsin do rapid culture or a different type of test?

[Guest guest]

I can't remember the lab for HHV6 but why not try to type in hhv6.com? I

think it's the web site for a place that tests for HHV6.

Steve Bullock

HHV-6

> I posted this the other day but did not get an answer. Anyone know what

is

> the best lab to get HHV-6a and HHV-Vb tested? I think i remember its

> someplace in Wisconsin but I forget the name of it. Thanks,

>

>

> 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 would definitely get tested for HHV6 and mycoplasma(s). Steve

Bullock

Re: HHV-6

> In a message dated 9/26/00 11:25:51 AM Pacific Daylight Time,

> catherine_holt@... writes:

>

> << The lab you are thinking of is Viracor. It is the one recommended by

Dr.

> Berg.

>

> I just had the Rapid Culture test done there, and to my astonishment came

up

> negative. Maybe this is why I don't have some of the CFIDS symptoms,

like

> muscle pain?

>

> Anyone know how definitive that test is?

> >>

>

>

> That lab name does not sound familiar. Is that the lab that test both

HHV-6A

> and HHV-6B? I thought there is one in Wisconsin that test for these?

Maybe

> I am wrong. PS. I just had the HEMEX test done and it came back

> positive...more then two results of the test were high. Anyone know which

> direction to take now? My doc just wants to put me on Heperin but isn't

> there other things I should do first, like get tested for HHV-6 and mycos?

I

> will check kens site but if anyone can add to this it would be very much

> appreciated.

>

>

> 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]

> That lab name does not sound familiar. Is that the lab that test both

HHV-6A

> and HHV-6B? I thought there is one in Wisconsin that test for these?

Wisconsin Viral just changed their name to Viracor. Confusing, isn't it?

_________________________________________________________

[Guest guest]

hi , i believe the rapid culture has at least a 50% false

negative rate. they are going to have another test available soon, with

no more false neg. the virus hides and is very difficult to detect in

blood. this doesn't happen with spinal fluid.

<<< The lab you are thinking of is Viracor. It is the one recommended by

Dr. Berg.

I just had the Rapid Culture test done there, and to my astonishment

came up negative. Maybe this is why I don't have some of the CFIDS

symptoms, like muscle pain?

Anyone know how definitive that test is? >>>

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

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

find? " - Agent Dales, X-Files

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

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

debbie s. - dlsherman@...

[Guest guest]

In a message dated 9/26/00 7:37:45 PM Pacific Daylight Time,

dlsherman@... writes:

<< yup! Viracor/Wisconsin Viral Research Group/HerpesDiagnostics -

http://www.hhv6, Konstance Knox and Carrigan, own the rapid

culture test for ACTIVE hhv6 - they're the only ones doing it. >>

so you mean I could get this test and have HHV-6 but still test negative on

it?? I didn't think was happening with HHV-6??!! What a bummer! I am so

sick and tired of test being test but NOT GOOD TEST....it seems like thats

all we have in the CFS...test that aren't really worth anything or that come

out wrong!

[Guest guest]

yup! Viracor/Wisconsin Viral Research Group/HerpesDiagnostics -

http://www.hhv6, Konstance Knox and Carrigan, own the rapid

culture test for ACTIVE hhv6 - they're the only ones doing it.

<<< O' darn. I didn't know the test for HHV-6 wasn't good either. Does

the lab in Wisconsin do rapid culture or a different type of test?

>>>

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

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

find? " - Agent Dales, X-Files

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

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

debbie s. - dlsherman@...

[Guest guest]

......check out the HHV6.com site. It tell you all the different

tests and explains why the Viral culture test that they offer is the

best for detecting ACTIVE HHV6-A. They suggest that a series of

cultures is done over several months in order to get an accurate

result,and that you have the tests done when you are feeling lousy,

especially as far as neurological/cognitive symptoms go. As far as I

can tell its not enough just to know that you have had HHV6.....lots

of people (20%) have had but in them the virus remains dormant. In

somepeople with CFS the virus keeps on reactivating in a cyclical

fashion and thats what you are trying to prove by getting these viral

cultures done.

I am about to go the same route. I am due to see my doctor next week

and will go armed with the paperwork to get the blood off to

Wisconsin. I would like to KNOW if this virus I have ( I tested

positive to HHV6-A by PCR ) is reactivating........it sure feels as

if SOMETHING is !!!, but what difference it will make in practice I

don't know as there don't seem to be antivirals that are effective

against HHV6A..........unless anyone out there knows different!!!

Anne

> In a message dated 9/26/00 4:00:45 PM Pacific Daylight Time,

> dlsherman@w... writes:

>

> << hi , i believe the rapid culture has at least a 50%

false

> negative rate. they are going to have another test available

soon, with

> no more false neg. the virus hides and is very difficult to

detect in

> blood. this doesn't happen with spinal fluid. >>

>

>

> O' darn. I didn't know the test for HHV-6 wasn't good either.

Does the lab

> in Wisconsin do rapid culture or a different type of test?

[Guest guest]

In a message dated 9/27/2000 6:13:41 AM Pacific Daylight Time,

johnu@... writes:

<< there don't seem to be antivirals that are effective

against HHV6A..........unless anyone out there knows different!!! >>

kutapressin has in vitro (in the test tube) activity against hhv6. Just

speaking for myself, kutapressin is one of the two things that have helped me

(out of literally hundreds fo things), and I have active hhv6. the other

thing that has helped is whey protein- both imuplus and immunepro. the

non-denatured whey proteins raise intracellular glutathione and that is

antimicrobial (including antiviral).

Plan to try East Park olive leaf extract. Supposed to be powerfully

antiviral also. By the way, just a point of interest, I tested positive for

active hhv6 on first try, and I don't really have the cognitive or much in

the way of neurological symptoms (much more flu-like symptomatology). I went

for the test while I was feeling majorly crummy. Normally would have stayed

in bed, but because I knew about the cyclical nature of this reactivation, I

figured if I have active hhv6, it must be active now! And I was right about

that! Good luck!

[Guest guest]

In a message dated 9/27/00 1:59:57 PM Pacific Daylight Time,

Inthepresent@... writes:

<< the way of neurological symptoms (much more flu-like symptomatology). I

went

for the test while I was feeling majorly crummy. Normally would have stayed

in bed, but because I knew about the cyclical nature of this reactivation, I

figured if I have active hhv6, it must be active now! And I was right about

that! Good luck! >>

can you explain your exact symptoms you get when you are active for

HHV-6? I am just trying to figure out if I should get tested now and I don't

know if I feel crummy enough.

[Guest guest]

In a message dated 9/27/2000 4:23:41 PM Pacific Daylight Time,

lbinujrsy@... writes:

<<

can you explain your exact symptoms you get when you are active

for

HHV-6? I am just trying to figure out if I should get tested now and I

don't

know if I feel crummy enough. >>

Hi ! Fevers, swollen painful lymph nodes, devestating fatigue. but

others with active hhv6 may have different symptoms. It's just to get tested

when *your* symptoms are at their worst.

[Guest guest]

> In a message dated 9/27/2000 6:13:41 AM Pacific Daylight Time,

> johnu@... writes:

>

> << there don't seem to be antivirals that are effective

> against HHV6A..........unless anyone out there knows different!!! >>

Isn't acyclovir active against HHV6?

I saw a long term study showing that acyclovir didn't help CFIDS patients,

but I seem to recall some people reporting good results.

_________________________________________________________

[Guest guest]

,

Why don't you call VeraCor? I spoke to someone there (a researcher) who had

alot of answers for me. He did say the A strain is the worst, but I got the

impression having an active B-strain is still bad, and not common.

I got the similar impression from Dr Ablashi. Active HHV6a or b is not

common, and thus is important to know. And, the treatments that work for A

work for B.

I'm still a bit new at this, but I'm about to get mine tested w/ Dr Ablashi.

He does not go through the process of discerning between the 2 strains, only

if any strain is active or not.

Is it possible your doctor meant that most people have latent HHV6?

Jim

[Guest guest]

Jim,

I think you must be right. He must have meant latent HHV6. It is my

understanding that HHV6a or b may or may not cause CFS in a subset of

patients but that treating an " active " HHV6 infection is beneficial if only

because it reduces the overall viral load, thus taking some stress off an

already overwhelmed immune system. Steve B (singing off for the day - no

more off-topic messages from me!).

PS: Unfortunately, treatments for active HHV6 infections appear to be

limited. Ganciclovir is supposed to have potential but can be toxic. Some

people have claimed Lysine, Cayenne, Cell Forte IP6, Apple Cider Vinegar may

be useful in suppressing. Prof. Alan Cochetto thinks Genisten, NAC, a

combination of sodium selenite added to heparin, Elmiron or cayenne may be

useful, as well as phyllanthus amarus/niuri, luaric acid (monlaurin),

octocoasanol, barley grass, resveratol, tumeric, Efamol, Rhu Toxidendron

(homeopathic), probiotics, and Listerine may be be useful in suppressing

HHV6-A.

Re: HHV-6

> ,

>

> Why don't you call VeraCor? I spoke to someone there (a researcher) who

had

> alot of answers for me. He did say the A strain is the worst, but I got

the

> impression having an active B-strain is still bad, and not common.

>

> I got the similar impression from Dr Ablashi. Active HHV6a or b is not

> common, and thus is important to know. And, the treatments that work for

A

> work for B.

>

> I'm still a bit new at this, but I'm about to get mine tested w/ Dr

Ablashi.

> He does not go through the process of discerning between the 2 strains,

only

> if any strain is active or not.

>

> Is it possible your doctor meant that most people have latent HHV6?

>

> 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]

In a message dated 10/28/00 2:54:58 PM Pacific Daylight Time,

bullocks@... writes:

<< PS: Unfortunately, treatments for active HHV6 infections appear to be

limited. Ganciclovir is supposed to have potential but can be toxic. Some

people have claimed Lysine, Cayenne, Cell Forte IP6, Apple Cider Vinegar may

be useful in suppressing. Prof. Alan Cochetto thinks Genisten, NAC, a

combination of sodium selenite added to heparin, Elmiron or cayenne may be

useful, as well as phyllanthus amarus/niuri, luaric acid (monlaurin),

octocoasanol, barley grass, resveratol, tumeric, Efamol, Rhu Toxidendron

(homeopathic), probiotics, and Listerine may be be useful in suppressing

HHV6-A. >>

I think there was just a post that stated that Taurine and carnitine might

help with HHV-6 as well. I will have to lool into this more.

[Guest guest]

As I stated previously, Kutapressin, and perhaps Ampligen, also help fight

HHV6.

Jim

[Guest guest]

We have been talking about the HHV6 virus for along time..........where have

you been?????????????