Re: HHV-6 Foundation on Valcyte effectiveness, safety for CFS

[Guest guest]

,

Thanks for this posting this. I was wondering what their position was but

thought it was possibly too early for them. This is certainly valuable to know.

HHV-6 Foundation on Valcyte effectiveness, safety

for CFS

Hi, j. and all.

I just got word back from the HHV-6 Foundation as I recently asked

them for comment regarding important questions about Valcyte for CFS.

Here's the key exchange:

[ H] Do you consider Valcyte an effective treatment for CFS, at

least for a subset of PWCs?

[HHV-6 F] YES - FOR THOSE WITH ELEVATED ANTIBODY TITERS. SEE OUR WEB SITE

[ H] Does Valcyte cross the blood-brain barrier readily, which

related, as I recall, the HHV-6 Foundation does conceive CFS as a

likely virally induced chronic infection of the CNS?

[HHV-6 F] YES IT CROSSES BBB AND YES, ALTHOUGH IT MAY ALSO BE IN THE

HEART TISSUE. SEE OUR WEB SITE ON HHV-6 & MYOCARDITIS

[ H] Is Valcyte safe, not too toxic in the HHV-6 Foundation's

view for the typical PWC to endure if treated with it for weeks or months?

[HHV-6 F] DURATION IS SIX MONTHS. WEEKS WON'T HELP. SO FAR MONTOYA HAS

HAD NO PROBLEMS. MOST OF THE SIDE EFFECT DATA WAS GENERATED FROM VERY

SICK AIDS PATIENTS TAKING IT FOR AIDS RETINITIS. IN TRANSPLANT

PATIENTS TAKING THE DRUG, THERE HAVE NOT BEEN THE SAME PROBLEMS.

HAVING SAID THAT, IT DOES CAUSE TUMORS IN MICE. BUT WE THINK HHV-6

CAUSES TUMORS TOO. CERTAINLY EBV DOES.

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

[Guest guest]

Dear ,I am new to this group and I am just getting my feet wet in all the

material that is being presented. I am glad that you wrote about the Valcyte

study. From what I have read about their past research, the effects of their

treatment with Valcyte have been quite good. What is troubling about the use of

that drug in particular is the shear cost of treatment for six months, which is

at least $ 20,000. Which drug plan will cover this kind of treatment and who can

afford this out of their own savings after being sick for years? I have been ill

with CFS for 17 years now and I know that people with my lenght of illness, have

to be on the drug longer than six months. When are the results of this testing

period going to be published?If this becomes an FDA approved treatment how do we

all pay for it?Mira S. Ghoshal@...:

david-hall@...: Wed, 27 Jun 2007 16:21:53 +0000Subject:

HHV-6 Foundation on Valcyte effectiveness, safety for CFS

Hi, j. and all.

I just got word back from the HHV-6 Foundation as I recently asked

them for comment regarding important questions about Valcyte for CFS.

Here's the key exchange:

[ H] Do you consider Valcyte an effective treatment for CFS, at

least for a subset of PWCs?

[HHV-6 F] YES - FOR THOSE WITH ELEVATED ANTIBODY TITERS. SEE OUR WEB SITE

[ H] Does Valcyte cross the blood-brain barrier readily, which

related, as I recall, the HHV-6 Foundation does conceive CFS as a

likely virally induced chronic infection of the CNS?

[HHV-6 F] YES IT CROSSES BBB AND YES, ALTHOUGH IT MAY ALSO BE IN THE

HEART TISSUE. SEE OUR WEB SITE ON HHV-6 & MYOCARDITIS

[ H] Is Valcyte safe, not too toxic in the HHV-6 Foundation's

view for the typical PWC to endure if treated with it for weeks or months?

[HHV-6 F] DURATION IS SIX MONTHS. WEEKS WON'T HELP. SO FAR MONTOYA HAS

HAD NO PROBLEMS. MOST OF THE SIDE EFFECT DATA WAS GENERATED FROM VERY

SICK AIDS PATIENTS TAKING IT FOR AIDS RETINITIS. IN TRANSPLANT

PATIENTS TAKING THE DRUG, THERE HAVE NOT BEEN THE SAME PROBLEMS.

HAVING SAID THAT, IT DOES CAUSE TUMORS IN MICE. BUT WE THINK HHV-6

CAUSES TUMORS TOO. CERTAINLY EBV DOES.

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

_________________________________________________________________

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[Guest guest]

Hi, Mira.

These are very good questions you have about valcyte treatment for

CFS. Unfortunately, I'm not the one to answer them for you and I have

great reservations that valcyte is as good as some early reports and

opinions might lead us to believe.

I have no grind to pick with Montoya et al and I'm perfectly willing

to let valcyte prove itself for CFS with further study if it can. I

just happen to see a lot of holes in its potential, though I wouldn't

ultimately mind being wrong about these seeming flaws.

FWIW, I've had ME/CFS for over 20 years myself.

Mira Ghoshal <mirasghoshal@...> wrote:

>

>

> Dear ,I am new to this group and I am just getting my feet wet

in all the material that is being presented. I am glad that you wrote

about the Valcyte study. From what I have read about their past

research, the effects of their treatment with Valcyte have been quite

good. What is troubling about the use of that drug in particular is

the shear cost of treatment for six months, which is at least $

20,000. Which drug plan will cover this kind of treatment and who can

afford this out of their own savings after being sick for years? I

have been ill with CFS for 17 years now and I know that people with my

lenght of illness, have to be on the drug longer than six months. When

are the results of this testing period going to be published?If this

becomes an FDA approved treatment how do we all pay for it?Mira S.

Ghoshal@...: david-hall@...: Wed, 27 Jun 2007

16:21:53 +0000Subject: HHV-6 Foundation on Valcyte

effectiveness, safety for CFS

>

[Guest guest]

Valcyte might not be approved for CFS yet per se, but it is approved

for the treatment of CMV, which is usually high in people who would

be going on the Valcyte treatment for CFS(EBV and HHV-6), and I've

heard people mention that their insurance picks it up.

Also, Roche is supposedly being very lenient in their patient

assistance program with Valcyte. You can look on the Roche website

and look for their patient assistance program for the phone number.

Sudden onset is desired as well. Supposedly gradual onsets don't get

benefit from Valcyte.

>

>

> Dear ,I am new to this group and I am just getting my feet wet

in all the material that is being presented. I am glad that you wrote

about the Valcyte study. From what I have read about their past

research, the effects of their treatment with Valcyte have been quite

good. What is troubling about the use of that drug in particular is

the shear cost of treatment for six months, which is at least $

20,000. Which drug plan will cover this kind of treatment and who can

afford this out of their own savings after being sick for years? I

have been ill with CFS for 17 years now and I know that people with

my lenght of illness, have to be on the drug longer than six months.

When are the results of this testing period going to be published?If

this becomes an FDA approved treatment how do we all pay for it?Mira

S. Ghoshal@...: david-hall@...: Wed, 27 Jun 2007

16:21:53 +0000Subject: HHV-6 Foundation on

Valcyte effectiveness, safety for CFS

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hi, j. and all.

>

> I just got word back from the HHV-6 Foundation as I recently asked

> them for comment regarding important questions about Valcyte for

CFS.

> Here's the key exchange:

>

> [ H] Do you consider Valcyte an effective treatment for CFS, at

> least for a subset of PWCs?

>

> [HHV-6 F] YES - FOR THOSE WITH ELEVATED ANTIBODY TITERS. SEE OUR

WEB SITE

>

> [ H] Does Valcyte cross the blood-brain barrier readily, which

> related, as I recall, the HHV-6 Foundation does conceive CFS as a

> likely virally induced chronic infection of the CNS?

>

> [HHV-6 F] YES IT CROSSES BBB AND YES, ALTHOUGH IT MAY ALSO BE IN THE

> HEART TISSUE. SEE OUR WEB SITE ON HHV-6 & MYOCARDITIS

>

> [ H] Is Valcyte safe, not too toxic in the HHV-6 Foundation's

> view for the typical PWC to endure if treated with it for weeks or

months?

>

> [HHV-6 F] DURATION IS SIX MONTHS. WEEKS WON'T HELP. SO FAR MONTOYA

HAS

> HAD NO PROBLEMS. MOST OF THE SIDE EFFECT DATA WAS GENERATED FROM

VERY

> SICK AIDS PATIENTS TAKING IT FOR AIDS RETINITIS. IN TRANSPLANT

> PATIENTS TAKING THE DRUG, THERE HAVE NOT BEEN THE SAME PROBLEMS.

> HAVING SAID THAT, IT DOES CAUSE TUMORS IN MICE. BUT WE THINK HHV-6

> CAUSES TUMORS TOO. CERTAINLY EBV DOES.

>

> http://www.hhv-6foundation.org

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> _________________________________________________________________

> With Windows Live Hotmail, you can personalize your inbox with your

favorite color.

> www.windowslive-hotmail.com/learnmore/personalize.html?locale=en-

us & ocid=TXT_TAGLM_HMWL_reten_addcolor_0607

>

>

[Guest guest]

Hi, j.

<mascis_j@...> wrote:

>

> Valcyte might not be approved for CFS yet per se, but it is approved

> for the treatment of CMV, which is usually high in people who would

> be going on the Valcyte treatment for CFS(EBV and HHV-6), and I've

> heard people mention that their insurance picks it up.

***Wow, what insurance co. covers something like this $14,000+ for six

months of treatment bill? I suspect it only applies to very newly

diagnosed PWCs who happen to have, quite fortunately, the specific

coverage from one of the few ins. cos. that have it. I highly doubt

it is covered by most and for those sick now many years after being

able to work stopped.

>

> Also, Roche is supposedly being very lenient in their patient

> assistance program with Valcyte. You can look on the Roche website

> and look for their patient assistance program for the phone number.

***I was just over at immunesupport.com today with some considering

doing the simplified treatment with valcyte and one PWC who apparently

has a doc willing to rx it was flatly rejected by Roche in getting any

reduction in cost let alone getting it free. Are you sure you're

talking valcyte rather than valtrex or gancyclovir, which I've heard

there is more lenient assistance from Roche or from whomever makes these?

Sudden onset is desired as well. Supposedly gradual onsets don't get

benefit from Valcyte.

***What is the source of your information for this subsets vs slow

onsets stark difference in response to valcyte? As you can see the

HHV-6 Foundation makes no such distinction and says it is simply those

with high titers that respond well, that is all. Official links to

Stanford and Montoya seem to suggest the same, so what gives?...

Off-label clinical data from docs treating PWCs with it?

***

[Guest guest]

I've only heard about the people taking it, so that might give a

biased interpretation. If someone got turned down, then they wouldn't

be taking it, and wouldn't be telling people that their insurance

covered it, so it might not be that accurate re: insurance covering

it. I've just heard people say their insurance was.

As for the patient assistance program, that would be according to

their income and if they have insurance, so I have no idea about

that, but yes it was about Valcyte. It's probably in the archives

under Roche, Valcyte, patient assistance, or some combination thereof.

About sudden vs. gradual onset, from the Montoya paper-

" Of the 12 patients, 9 ( " responders " )had a dramatic improvement in

their fatigueand central nervous system symptoms(p=0.007) and 3 ( " non-

responders " ) failed toreport any progress. "

" Of the9 responders, 9 (100%) experienced the onsetof their chronic

fatigue syndrome as a " flu-like " illness and 4 (45%) developed lympha-

denopathy. Whereas of the 3 non-responders,only 1 (33%) had a " flu-

like " illness at theonset of the disease and 1 (33%)

developedlymphadenopathy. "

It goes on to say that all the responders experience an initial

worsening of symptoms, or herxing, while the non-responders had no

initial reaction. Also, someone on here said they took Valcyte and

had no response to it, and they were gradual onset. I guess it is too

early to be sure, though.

Have you read the study .pdf? I'll email it to you if you email me

your email addy. You can't attach files to the messages from the

board.

>

> Hi, j.

>

> ***Wow, what insurance co. covers something like this $14,000+ for

six

> months of treatment bill? I suspect it only applies to very newly

> diagnosed PWCs who happen to have, quite fortunately, the specific

> coverage from one of the few ins. cos. that have it. I highly doubt

> it is covered by most and for those sick now many years after being

> able to work stopped.

>

>

> >

> > Also, Roche is supposedly being very lenient in their patient

> > assistance program with Valcyte. You can look on the Roche

website

> > and look for their patient assistance program for the phone

number.

>

>

>

> ***I was just over at immunesupport.com today with some considering

> doing the simplified treatment with valcyte and one PWC who

apparently

> has a doc willing to rx it was flatly rejected by Roche in getting

any

> reduction in cost let alone getting it free. Are you sure you're

> talking valcyte rather than valtrex or gancyclovir, which I've heard

> there is more lenient assistance from Roche or from whomever makes

these?

>

>

>

> Sudden onset is desired as well. Supposedly gradual onsets don't

get

> benefit from Valcyte.

>

>

>

> ***What is the source of your information for this subsets vs slow

> onsets stark difference in response to valcyte? As you can see the

> HHV-6 Foundation makes no such distinction and says it is simply

those

> with high titers that respond well, that is all. Official links to

> Stanford and Montoya seem to suggest the same, so what gives?...

> Off-label clinical data from docs treating PWCs with it?

>

>

>

> ***

>

[Guest guest]

Hi, J.

" j mascis " <mascis_j@...> wrote:

>

> I've only heard about the people taking it, so that might give a

> biased interpretation. If someone got turned down, then they wouldn't

> be taking it, and wouldn't be telling people that their insurance

> covered it, so it might not be that accurate re: insurance covering

> it. I've just heard people say their insurance was.

***Alright.

>

> As for the patient assistance program, that would be according to

> their income and if they have insurance, so I have no idea about

> that, but yes it was about Valcyte. It's probably in the archives

> under Roche, Valcyte, patient assistance, or some combination thereof.

>

> About sudden vs. gradual onset, from the Montoya paper-

> " Of the 12 patients, 9 ( " responders " )had a dramatic improvement in

> their fatigueand central nervous system symptoms(p=0.007) and 3 ( " non-

> responders " ) failed toreport any progress. "

> " Of the9 responders, 9 (100%) experienced the onsetof their chronic

> fatigue syndrome as a " flu-like " illness and 4 (45%) developed lympha-

> denopathy. Whereas of the 3 non-responders,only 1 (33%) had a " flu-

> like " illness at theonset of the disease and 1 (33%)

> developedlymphadenopathy. "

***So, the phrase " sudden onset " or " slow onset " was not used it seems

in the report, but you're taking those whose onset was accompanied

with flu-like symptoms and responded to valcyte as " sudden onset "

types, yes?

> It goes on to say that all the responders experience an initial

> worsening of symptoms, or herxing, while the non-responders had no

> initial reaction. Also, someone on here said they took Valcyte and

> had no response to it, and they were gradual onset.

***So, the phrase " gradual onset " was used?

I guess it is too

> early to be sure, though.

***Yes, as with just about everything new in CFS treatment as of late.

> Have you read the study .pdf?

***I did a while back, but would like to look at a duplicate copy.

I'll email it to you if you email me

> your email addy. You can't attach files to the messages from the

> board.

***

<david-hall@> wrote:

> >

> >

> >

> > ***What is the source of your information for this subsets vs slow

> > onsets stark difference in response to valcyte? As you can see the

> > HHV-6 Foundation makes no such distinction and says it is simply

> those

> > with high titers that respond well, that is all. Official links to

> > Stanford and Montoya seem to suggest the same, so what gives?...

> > Off-label clinical data from docs treating PWCs with it?

> >

> >

> >

> > ***

> >

>

[Guest guest]

Dear ,What are the holes that you see in treatment with Valcyte? I was

wondering to myself, that if the levels of antibodies to HHV6 and EBV go down

using another method, then why try Valcyte. I have a good friend whose

antibodies went down and he does not feel any better. There is something else

going on here. I think that the HHV-6 is an opportunistic infection. I have a

feeling that the main culprit in all of this is mycoplasma fermentans incognitus

and the other three types of pathogenic mycoplasma. I have read that this

mycoplamsa lives in our white blood cells and eats them from the inside, it also

travels all over the body via the white blood cells and it goes into any other

cell and eats those from the inside. So our bodies are constantly having to

rebuild themselves. I am going to try the antibiotic treatment as recommend by

Dr. Garth Nicholson if I find a doctor here in Poland who would do this with me.

I lived in the US for most of my life, but I moved back to my native Poland

about one year ago. Did you ever try the antibiotic way of treating CFS? I have

read on Dr. Nicholson's website that 80% of people who are treated with

antibiotics recover from 50%-100% of their health. I would take 50% of my health

back any time!I don't know how to do a link on my Polish web connection, so this

is their address.www.immed.orgor if you want a simplyfied

explanationwww.mycoplasmasupport.orgMiraTo:

@...: david-hall@...: Thu, 28 Jun

2007 20:51:11 +0000Subject: Re: HHV-6 Foundation on Valcyte

effectiveness, safety for CFS

Hi, Mira.

These are very good questions you have about valcyte treatment for

CFS. Unfortunately, I'm not the one to answer them for you and I have

great reservations that valcyte is as good as some early reports and

opinions might lead us to believe.

I have no grind to pick with Montoya et al and I'm perfectly willing

to let valcyte prove itself for CFS with further study if it can. I

just happen to see a lot of holes in its potential, though I wouldn't

ultimately mind being wrong about these seeming flaws.

FWIW, I've had ME/CFS for over 20 years myself.

Mira Ghoshal <mirasghoshal@...> wrote:

>

>

> Dear ,I am new to this group and I am just getting my feet wet

in all the material that is being presented. I am glad that you wrote

about the Valcyte study. From what I have read about their past

research, the effects of their treatment with Valcyte have been quite

good. What is troubling about the use of that drug in particular is

the shear cost of treatment for six months, which is at least $

20,000. Which drug plan will cover this kind of treatment and who can

afford this out of their own savings after being sick for years? I

have been ill with CFS for 17 years now and I know that people with my

lenght of illness, have to be on the drug longer than six months. When

are the results of this testing period going to be published?If this

becomes an FDA approved treatment how do we all pay for it?Mira S.

Ghoshal@...: david-hall@...: Wed, 27 Jun 2007

16:21:53 +0000Subject: HHV-6 Foundation on Valcyte

effectiveness, safety for CFS

>

_________________________________________________________________

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[Guest guest]

Yes I am equating sudden onset with 'flu-like onset'.

" Of the two dozen patients Montoya and Kogelnik have since treated,

the 20 that responded all had developed CFS after an initial flulike

illness, while the non-responders had suffered no initial flu. "

http://www.eurekalert.org/pub_releases/2007-01/sumc-ntf010807.php

As for the person here who took it and said it didn't help them, the

messages 115914, 115955, 115978 discuss it.

> > >

> > >

> > >

> > > ***What is the source of your information for this subsets vs

slow

> > > onsets stark difference in response to valcyte? As you can see

the

> > > HHV-6 Foundation makes no such distinction and says it is

simply

> > those

> > > with high titers that respond well, that is all. Official

links to

> > > Stanford and Montoya seem to suggest the same, so what

gives?...

> > > Off-label clinical data from docs treating PWCs with it?

> > >

> > >

> > >

> > > ***

> > >

> >

>

[Guest guest]

I also suspect that the viruses are not the MAIN players. I just

started taking Valtrex because my IgG EBV titre was very high after

several years of antibiotics following Dr. Nicolson's protocol for

mycoplasma.

Yesterday I was going through old files and came across a

pathologist's comments about borrelia (Lyme disease bacteria) being

INSIDE cells. He commented that antivirals may kill borrelia.

So it may be that Valtrex and Valcyte are killing mycoplasma and

borrelia as well as reducing viral load.

I would be interested in any other input on this possibility.

a Carnes

>

>

> Dear ,What are the holes that you see in treatment with

Valcyte? I was wondering to myself, that if the levels of antibodies

to HHV6 and EBV go down using another method, then why try Valcyte. I

have a good friend whose antibodies went down and he does not feel

any better. There is something else going on here. I think that the

HHV-6 is an opportunistic infection. I have a feeling that the main

culprit in all of this is mycoplasma fermentans incognitus and the

other three types of pathogenic mycoplasma. I have read that this

mycoplamsa lives in our white blood cells and eats them from the

inside, it also travels all over the body via the white blood cells

and it goes into any other cell and eats those from the inside. So

our bodies are constantly having to rebuild themselves. I am going to

try the antibiotic treatment as recommend by Dr. Garth Nicholson if I

find a doctor here in Poland who would do this with me. I lived in

the US for most of my life, but I moved back to my native Poland

about one year ago. Did you ever try the antibiotic way of treating

CFS? I have read on Dr. Nicholson's website that 80% of people who

are treated with antibiotics recover from 50%-100% of their health. I

would take 50% of my health back any time!I don't know how to do a

link on my Polish web connection, so this is their

address.www.immed.orgor if you want a simplyfied

explanationwww.mycoplasmasupport.orgMira@...:

david-hall@...: Thu, 28 Jun 2007 20:51:11 +0000Subject:

Re: HHV-6 Foundation on Valcyte effectiveness,

safety for CFS

[Guest guest]

Interesting. This may be why my cognitive function returned to normal for 6

months while I was on famvir/famcyclovir in 1998. I got tick bite in 96 and

tested positive for babesia and probable lyme in 2005. Think I got hhv-6a many

years before tick bite and assumed the famvir was neutralizing a virus.but this

may not be the case. Steve B.

pjeanneus <pj7@...> wrote: I also suspect that the viruses are not

the MAIN players. I just

started taking Valtrex because my IgG EBV titre was very high after

several years of antibiotics following Dr. Nicolson's protocol for

mycoplasma.

Yesterday I was going through old files and came across a

pathologist's comments about borrelia (Lyme disease bacteria) being

INSIDE cells. He commented that antivirals may kill borrelia.

So it may be that Valtrex and Valcyte are killing mycoplasma and

borrelia as well as reducing viral load.

I would be interested in any other input on this possibility.

a Carnes

>

>

> Dear ,What are the holes that you see in treatment with

Valcyte? I was wondering to myself, that if the levels of antibodies

to HHV6 and EBV go down using another method, then why try Valcyte. I

have a good friend whose antibodies went down and he does not feel

any better. There is something else going on here. I think that the

HHV-6 is an opportunistic infection. I have a feeling that the main

culprit in all of this is mycoplasma fermentans incognitus and the

other three types of pathogenic mycoplasma. I have read that this

mycoplamsa lives in our white blood cells and eats them from the

inside, it also travels all over the body via the white blood cells

and it goes into any other cell and eats those from the inside. So

our bodies are constantly having to rebuild themselves. I am going to

try the antibiotic treatment as recommend by Dr. Garth Nicholson if I

find a doctor here in Poland who would do this with me. I lived in

the US for most of my life, but I moved back to my native Poland

about one year ago. Did you ever try the antibiotic way of treating

CFS? I have read on Dr. Nicholson's website that 80% of people who

are treated with antibiotics recover from 50%-100% of their health. I

would take 50% of my health back any time!I don't know how to do a

link on my Polish web connection, so this is their

address.www.immed.orgor if you want a simplyfied

explanationwww.mycoplasmasupport.orgMira@...:

david-hall@...: Thu, 28 Jun 2007 20:51:11 +0000Subject:

Re: HHV-6 Foundation on Valcyte effectiveness,

safety for CFS

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

Need a vacation? Get great deals to amazing places on Travel.

[Guest guest]

Hi, Mira.

Mira Ghoshal <mirasghoshal@...> wrote:

>

>

> Dear ,What are the holes that you see in treatment with Valcyte?

***It doesn't address the root cause of glutathione depletion and

methylation cycle blocks that would allow an infection such as EBV and

HHV6 to come out of latency and activate in the first place, leading

to the inflammation in body and brain. It is for this reason that I

think initial benefits some may experience from valcyte will go away,

they will relapse.

I was wondering to myself, that if the levels of antibodies to HHV6

and EBV go down using another method, then why try Valcyte. I have a

good friend whose antibodies went down and he does not feel any

better. There is something else going on here. I think that the HHV-6

is an opportunistic infection. I have a feeling that the main culprit

in all of this is mycoplasma fermentans incognitus and the other three

types of pathogenic mycoplasma.

***Mycoplasmal infections are oportunistic too and can thrive in a

body that is glutathione depleted and methylation cycle blocked.

I've know from personal testing that my m. fermentans incognitus

infection has been flat lined and Dr Cheney has observed the same by

using whey protein(a gluathione builder) in some of his patients who

tested positive for mycoplasma.

I have read that this mycoplamsa lives in our white blood cells and

eats them from the inside, it also travels all over the body via the

white blood cells and it goes into any other cell and eats those from

the inside. So our bodies are constantly having to rebuild themselves.

I am going to try the antibiotic treatment as recommend by Dr. Garth

Nicholson if I find a doctor here in Poland who would do this with me.

I lived in the US for most of my life, but I moved back to my native

Poland about one year ago. Did you ever try the antibiotic way of

treating CFS?

***Yes and quite a lot of them. They didn't work.

I have read on Dr. Nicholson's website that 80% of people who are

treated with antibiotics recover from 50%-100% of their health.

***I greatly doubt these numbers for ME/CFS. It has been quite rare

in my experience of meeting and talking to PWCs as well as in the

comments of many ME/CFS specialists over 20 years that antibiotics,

especially antibiotics when used alone, ever really work for a PWC.

I would take 50% of my health back any time!I don't know how to do a

link on my Polish web connection, so this is their

address.www.immed.orgor if you want a simplyfied

explanationwww.mycoplasmasupport.org

***

[Guest guest]

Thanks for that item, a. Really, with all that we acummulate, I've never

understood how anyone can be sure " what " an antibiotic is actually succeeding

at.

Could be true for anti-virals too.

AS mentioned, I use Valtrex for a kick start and it always works. abx help

" something " the first few days, even if not the thing I'm addressing. But I

cannot tolerate most of them at all.

BW,

Katrina

- I also suspect that the viruses are not

the MAIN players. I just

> started taking Valtrex because my IgG EBV titre was very high after

> several years of antibiotics following Dr. Nicolson's protocol for

> mycoplasma.

>

> Yesterday I was going through old files and came across a

> pathologist's comments about borrelia (Lyme disease bacteria) being

> INSIDE cells. He commented that antivirals may kill borrelia.

>

> So it may be that Valtrex and Valcyte are killing mycoplasma and

> borrelia as well as reducing viral load.

>

> I would be interested in any other input on this possibility.

>

> a Carnes

>

> >

> >

> > Dear ,What are the holes that you see in treatment with

> Valcyte? I was wondering to myself, that if the levels of antibodies

> to HHV6 and EBV go down using another method, then why try Valcyte. I

> have a good friend whose antibodies went down and he does not feel

> any better. There is something else going on here. I think that the

> HHV-6 is an opportunistic infection. I have a feeling that the main

> culprit in all of this is mycoplasma fermentans incognitus and the

> other three types of pathogenic mycoplasma. I have read that this

> mycoplamsa lives in our white blood cells and eats them from the

> inside, it also travels all over the body via the white blood cells

> and it goes into any other cell and eats those from the inside. So

> our bodies are constantly having to rebuild themselves. I am going to

> try the antibiotic treatment as recommend by Dr. Garth Nicholson if I

> find a doctor here in Poland who would do this with me. I lived in

> the US for most of my life, but I moved back to my native Poland

> about one year ago. Did you ever try the antibiotic way of treating

> CFS? I have read on Dr. Nicholson's website that 80% of people who

> are treated with antibiotics recover from 50%-100% of their health. I

> would take 50% of my health back any time!I don't know how to do a

> link on my Polish web connection, so this is their

> address.www.immed.orgor if you want a simplyfied

> explanationwww.mycoplasmasupport.orgMira@:

> david-hall@: Thu, 28 Jun 2007 20:51:11 +0000Subject:

> Re: HHV-6 Foundation on Valcyte effectiveness,

> safety for CFS

>

>

>

>

>

>

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

> Need a vacation? Get great deals to amazing places on Travel.

>

>

[Guest guest]

Can anyone provide a link to Garth Nicolson's protocol. For some reason, I can't

find it!

Thanks

Re: HHV-6 Foundation on Valcyte effectiveness,

safety for CFS

[Guest guest]

It does address glutathione depletion, since it has been hypothesised

as early as 1999 that an active chronic infection depletes the body

of glutathione and that is what causes CFS. See- Competition for

glutathione precursors between the immune system and the skeletal

muscle: pathogenesis of chronic fatigue syndrome on pubmed.

So when you get rid of the infection, there is no more competition

for glutathione.

> >

> >

> > Dear ,What are the holes that you see in treatment with

Valcyte?

>

>

>

> ***It doesn't address the root cause of glutathione depletion and

> methylation cycle blocks that would allow an infection such as EBV

and

> HHV6 to come out of latency and activate in the first place, leading

> to the inflammation in body and brain. It is for this reason that I

> think initial benefits some may experience from valcyte will go

away,

> they will relapse.

>

>

>

> I was wondering to myself, that if the levels of antibodies to HHV6

> and EBV go down using another method, then why try Valcyte. I have a

> good friend whose antibodies went down and he does not feel any

> better. There is something else going on here. I think that the HHV-

6

> is an opportunistic infection. I have a feeling that the main

culprit

> in all of this is mycoplasma fermentans incognitus and the other

three

> types of pathogenic mycoplasma.

>

>

>

> ***Mycoplasmal infections are oportunistic too and can thrive in a

> body that is glutathione depleted and methylation cycle blocked.

> I've know from personal testing that my m. fermentans incognitus

> infection has been flat lined and Dr Cheney has observed the same by

> using whey protein(a gluathione builder) in some of his patients who

> tested positive for mycoplasma.

>

>

>

> I have read that this mycoplamsa lives in our white blood cells and

> eats them from the inside, it also travels all over the body via the

> white blood cells and it goes into any other cell and eats those

from

> the inside. So our bodies are constantly having to rebuild

themselves.

> I am going to try the antibiotic treatment as recommend by Dr. Garth

> Nicholson if I find a doctor here in Poland who would do this with

me.

> I lived in the US for most of my life, but I moved back to my native

> Poland about one year ago. Did you ever try the antibiotic way of

> treating CFS?

>

>

>

> ***Yes and quite a lot of them. They didn't work.

>

>

>

> I have read on Dr. Nicholson's website that 80% of people who are

> treated with antibiotics recover from 50%-100% of their health.

>

>

>

> ***I greatly doubt these numbers for ME/CFS. It has been quite rare

> in my experience of meeting and talking to PWCs as well as in the

> comments of many ME/CFS specialists over 20 years that antibiotics,

> especially antibiotics when used alone, ever really work for a PWC.

>

>

>

> I would take 50% of my health back any time!I don't know how to do a

> link on my Polish web connection, so this is their

> address.www.immed.orgor if you want a simplyfied

> explanationwww.mycoplasmasupport.org

>

>

>

> ***

>

[Guest guest]

Hi, J.

<mascis_j@...> wrote:

>

> It does address glutathione depletion, since it has been hypothesised

> as early as 1999 that an active chronic infection depletes the body

> of glutathione and that is what causes CFS.

***Yes, infections, both acute and chronic, deplete glutathione, but

so do many other things and methylation cycle blocks are the first

reason many end up getting chronic infections while others without

such blockades don't. The determining factor in CFS is not infections

though these exist and are often active in us.

***If infections were the determining factor a whole lot of other

people would be sick with a CFS or we wouldn't be sick at all at this

point. Though it would be great if valcyte could change this trend,

to date the infection as cause theory doesn't fit the facts for CFS

and this is why purely antimicrobial treatments historically have been

such an overwhelming failure for it.

while thoseSee- Competition for

> glutathione precursors between the immune system and the skeletal

> muscle: pathogenesis of chronic fatigue syndrome on pubmed.

***True, but go deeper. Look at all of the 100+ scientific references

if you must in the GD-MCB hypothesis for CFS pathogenesis presented at

the Jan 2007 IACFS Conference, methylation cycle blocks are upstream

of both infection and toxins for determining glutathione status.

>

> So when you get rid of the infection, there is no more competition

> for glutathione.

***Well, many PWCs have successfully knocked down infections with no

lasting symptom improvement and no increase in glutathione status. So,

this suggests there is more to it than the ying and yang of infections

depleting glutathione, though this is PART of the vicious circle in CFS.

***

<david-

> hall@> wrote:

> >

> > Hi, Mira.

> >

> >

> >

> > Mira Ghoshal <mirasghoshal@> wrote:

> > >

> > >

> > > Dear ,What are the holes that you see in treatment with

> Valcyte?

> >

> >

> >

> > ***It doesn't address the root cause of glutathione depletion and

> > methylation cycle blocks that would allow an infection such as EBV

> and

> > HHV6 to come out of latency and activate in the first place, leading

> > to the inflammation in body and brain. It is for this reason that I

> > think initial benefits some may experience from valcyte will go

> away,

> > they will relapse.

> >

[Guest guest]

Dear ,How long did you take the antibiotics? Did you take anything alont

with them. Dr. Nicholson now write that we should be taking medications that are

antivirals along with the antibiotics. I am so confused about all of this, as I

am sure that many people are as well.MiraTo:

@...: david-hall@...: Sun, 1 Jul

2007 16:37:03 +0000Subject: Re: HHV-6 Foundation on Valcyte

effectiveness, safety for CFS

Hi, Mira.

Mira Ghoshal <mirasghoshal@...> wrote:

>

>

> Dear ,What are the holes that you see in treatment with Valcyte?

***It doesn't address the root cause of glutathione depletion and

methylation cycle blocks that would allow an infection such as EBV and

HHV6 to come out of latency and activate in the first place, leading

to the inflammation in body and brain. It is for this reason that I

think initial benefits some may experience from valcyte will go away,

they will relapse.

I was wondering to myself, that if the levels of antibodies to HHV6

and EBV go down using another method, then why try Valcyte. I have a

good friend whose antibodies went down and he does not feel any

better. There is something else going on here. I think that the HHV-6

is an opportunistic infection. I have a feeling that the main culprit

in all of this is mycoplasma fermentans incognitus and the other three

types of pathogenic mycoplasma.

***Mycoplasmal infections are oportunistic too and can thrive in a

body that is glutathione depleted and methylation cycle blocked.

I've know from personal testing that my m. fermentans incognitus

infection has been flat lined and Dr Cheney has observed the same by

using whey protein(a gluathione builder) in some of his patients who

tested positive for mycoplasma.

I have read that this mycoplamsa lives in our white blood cells and

eats them from the inside, it also travels all over the body via the

white blood cells and it goes into any other cell and eats those from

the inside. So our bodies are constantly having to rebuild themselves.

I am going to try the antibiotic treatment as recommend by Dr. Garth

Nicholson if I find a doctor here in Poland who would do this with me.

I lived in the US for most of my life, but I moved back to my native

Poland about one year ago. Did you ever try the antibiotic way of

treating CFS?

***Yes and quite a lot of them. They didn't work.

I have read on Dr. Nicholson's website that 80% of people who are

treated with antibiotics recover from 50%-100% of their health.

***I greatly doubt these numbers for ME/CFS. It has been quite rare

in my experience of meeting and talking to PWCs as well as in the

comments of many ME/CFS specialists over 20 years that antibiotics,

especially antibiotics when used alone, ever really work for a PWC.

I would take 50% of my health back any time!I don't know how to do a

link on my Polish web connection, so this is their

address.www.immed.orgor if you want a simplyfied

explanationwww.mycoplasmasupport.org

***

_________________________________________________________________

Make every IM count. Download Windows Live Messenger and join the i’m Initiative

now. It’s free. 

http://im.live.com/messenger/im/home/?source=TAGWL_June07

[Guest guest]

Dear ,Can you explain what is glutathione and what is metylation cycle. I

took shots of G. for nine years weekly and I was not well after all of that.

This is all very hard to understand. I guess you have read enough of the

literature that you undestand these terms right away. For me, this is hard

because the words come one after another and I don't know any of their

meanings.Thank you so much for writing me back so soon!MiraTo:

@...: david-hall@...: Mon, 2 Jul

2007 02:00:35 +0000Subject: Re: HHV-6 Foundation on Valcyte

effectiveness, safety for CFS

Hi, J.

<mascis_j@...> wrote:

>

> It does address glutathione depletion, since it has been hypothesised

> as early as 1999 that an active chronic infection depletes the body

> of glutathione and that is what causes CFS.

***Yes, infections, both acute and chronic, deplete glutathione, but

so do many other things and methylation cycle blocks are the first

reason many end up getting chronic infections while others without

such blockades don't. The determining factor in CFS is not infections

though these exist and are often active in us.

***If infections were the determining factor a whole lot of other

people would be sick with a CFS or we wouldn't be sick at all at this

point. Though it would be great if valcyte could change this trend,

to date the infection as cause theory doesn't fit the facts for CFS

and this is why purely antimicrobial treatments historically have been

such an overwhelming failure for it.

while thoseSee- Competition for

> glutathione precursors between the immune system and the skeletal

> muscle: pathogenesis of chronic fatigue syndrome on pubmed.

***True, but go deeper. Look at all of the 100+ scientific references

if you must in the GD-MCB hypothesis for CFS pathogenesis presented at

the Jan 2007 IACFS Conference, methylation cycle blocks are upstream

of both infection and toxins for determining glutathione status.

>

> So when you get rid of the infection, there is no more competition

> for glutathione.

***Well, many PWCs have successfully knocked down infections with no

lasting symptom improvement and no increase in glutathione status. So,

this suggests there is more to it than the ying and yang of infections

depleting glutathione, though this is PART of the vicious circle in CFS.

***

<david-

> hall@> wrote:

> >

> > Hi, Mira.

> >

> >

> >

> > Mira Ghoshal <mirasghoshal@> wrote:

> > >

> > >

> > > Dear ,What are the holes that you see in treatment with

> Valcyte?

> >

> >

> >

> > ***It doesn't address the root cause of glutathione depletion and

> > methylation cycle blocks that would allow an infection such as EBV

> and

> > HHV6 to come out of latency and activate in the first place, leading

> > to the inflammation in body and brain. It is for this reason that I

> > think initial benefits some may experience from valcyte will go

> away,

> > they will relapse.

> >

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today it's FREE!

http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

[Guest guest]

Hi, Mira.

<mirasghoshal@...> wrote:

>

>

> Dear ,How long did you take the antibiotics?

***About 4 years total.

Did you take anything alont with them.

***Only benicar with minocycline and zithromax in 2004-2005.

Dr. Nicholson now write that we should be taking medications that are

antivirals along with the antibiotics. I am so confused about all of

this, as I am sure that many people are as well.

***Yes, that's not surprising. The only way I've resolved confusion

is to personally research the issues myself as well as taking

expressed views on any related topic into consideration.

***

[Guest guest]

Hi, Mira.

<mirasghoshal@...> wrote:

>

>

> Dear ,Can you explain what is glutathione and what is

metylation cycle. I took shots of G. for nine years weekly and I was

not well after all of that. This is all very hard to understand. I

guess you have read enough of the literature that you undestand these

terms right away. For me, this is hard because the words come one

after another and I don't know any of their meanings.Thank you so much

for writing me back so soon!Mira

***I don't think I can help you resolve the problem of needing to look

up terms, there may be no way around this if you want clearer

understanding. You could start with looking up glutathione and/or

methylation at wikipedia.org.

***Doing this might help and then take a look at Rich's Glutathione

Depletion-Methylation Cycle Block hypothesis for CFS pathogenesis

poster presented at this years IACFS Conference back in January at

this link:

CFS_Yasko/files/

***This could really help even if you don't understand all of it.

Since you have the diagnosis of CFS, you'll likely recognize some

things that describe how this illness progresses and this will help

you better understand the technical terms more.

***

[Guest guest]

That's interesting , and can I ask you how much sick are you at this time

and if eventually those 4 years helped you in a way?

Thanks a lot.

Massimo

Re: HHV-6 Foundation on Valcyte effectiveness,

safety for CFS

Hi, Mira.

<mirasghoshal@...> wrote:

>

>

> Dear ,How long did you take the antibiotics?

***About 4 years total.

Did you take anything alont with them.

***Only benicar with minocycline and zithromax in 2004-2005.

Dr. Nicholson now write that we should be taking medications that are

antivirals along with the antibiotics. I am so confused about all of

this, as I am sure that many people are as well.

***Yes, that's not surprising. The only way I've resolved confusion

is to personally research the issues myself as well as taking

expressed views on any related topic into consideration.

***

[Guest guest]

Hi, Massimo.

<maxupolo@...> wrote:

>

> That's interesting , and can I ask you how much sick are you at

this time and if eventually those 4 years helped you in a way?

>

> Thanks a lot.

>

> Massimo

***I'm not any sicker and am actually improved from glutathione

boosting since 2005, though there still remains a major hurdle to

overcome with constant neuropathic brain pain and inflammation. And 4

years of antibiotics didn't help, I was just as sick after that time

as I had been before.

***

>

> ----- Original Message -----

> From: davidhall2020

>

> Hi, Mira.

>

> <mirasghoshal@> wrote:

> >

> >

> > Dear ,How long did you take the antibiotics?

>

> ***About 4 years total.

>

> Did you take anything alont with them.

>

> ***Only benicar with minocycline and zithromax in 2004-2005.

[Guest guest]

Those of us who did well on longterm antibiotics, people who improved

to at least 80% recovery, are now adding in Valtrex and Valcyte when

possible to try and get complete recovery. Do a google search on

Montoya and valcyte. There is reason to believe that if your case

involves borrelia, babesia, bartonella and mycoplasma it PROBABLY

ALSO INVOLVES EBV AND HHV6.

One thing that happens on an email list such as this is that those of

us who did respond to a treatment a few years ago get bypassed and

ignored by those who did not respond to that same treatment. A lot of

us do well on antibiotics. We don't claim to be cured. But then who

is?

In addition, there is not reason why someone like myself would not

benefit from trying antivirals AND Yasko. Why not?

a Carnes

>

> Hi, Mira.

>

>

> <mirasghoshal@> wrote:

> >

> >

> > Dear ,How long did you take the antibiotics?

>

>

>

> ***About 4 years total.

>

>

>

> Did you take anything alont with them.

>

>

>

> ***Only benicar with minocycline and zithromax in 2004-2005.

>

>

>

> Dr. Nicholson now write that we should be taking medications that

are

> antivirals along with the antibiotics. I am so confused about all of

> this, as I am sure that many people are as well.

>

>

>

> ***Yes, that's not surprising. The only way I've resolved confusion

> is to personally research the issues myself as well as taking

> expressed views on any related topic into consideration.

>

>

>

> ***

>

[Guest guest]

I think it is very confusing right now, because we have one set of

list members advocating abx, one set antivirals and another set a

nutritional/vitamin protocol. However, that is what this list is

for, experimental treatments.

I think we have to keep in mind that in dealing w/ 'CFS', we may

not all have the same pathogen/problem. Therefore, what works for

one person may not work for another. The only example of this is

I believe Dr. Lerner's antiviral protocol, where your bloodwork has

to show signs of viral activity before you get the gancyclovir.

To me, this is the direction that we should be going-suiting the

treatment for the individual. The problem is, you only have docs

who favor abx (Nicholson), or antivirals (Lerner) or nutritional

methods (Yasko). Then there are docs like Dr. Klimas who admit that

they really don't know what is going on and treat symptoms, such

as sleep, pain, etc.

Mike C.

>

>

> Dear ,How long did you take the antibiotics? Did you take

anything alont with them. Dr. Nicholson now write that we should be

taking medications that are antivirals along with the antibiotics. I

am so confused about all of this, as I am sure that many people are

as well.Mira@...: david-hall@...: Sun, 1 Jul

2007 16:37:03 +0000Subject: Re: HHV-6 Foundation

on Valcyte effectiveness, safety for CFS

[Guest guest]

Mike, I think things are getting clearer than they used to be. Those

of us who took antibiotics also took a lot of supplements etc.

Currently Montoya is only treating those with elevated EBV and HHV6

with Valcyte, so he is not suggesting treating all patients with

antivirals. And Dr. Stratton started an antibiotic protocol based on

folks who tested positive for c. pneumoniae. I continue to hear good

comments from that group. The Lyme doctors are looking more and more

for babesia which they seem to think is a big player. To me this

looks like some progress.

a

>

> I think it is very confusing right now, because we have one set of

> list members advocating abx, one set antivirals and another set a

> nutritional/vitamin protocol. However, that is what this list is

> for, experimental treatments.

>

> I think we have to keep in mind that in dealing w/ 'CFS', we may

> not all have the same pathogen/problem. Therefore, what works for

> one person may not work for another. The only example of this is

> I believe Dr. Lerner's antiviral protocol, where your bloodwork has

> to show signs of viral activity before you get the gancyclovir.

> To me, this is the direction that we should be going-suiting the

> treatment for the individual. The problem is, you only have docs

> who favor abx (Nicholson), or antivirals (Lerner) or nutritional

> methods (Yasko). Then there are docs like Dr. Klimas who admit that

> they really don't know what is going on and treat symptoms, such

> as sleep, pain, etc.

>

> Mike C.

>