Re: Dr. Lerner-Valtrex

January 21, 2008

Yes. I have been on Valtrex for 2 months when EBV reactivated in July. I had

past CMV titers, not elevated at the time EBV reactivated. I wonder why Valtrax

isn't used for CMV...it's a virus too.

Diane in MI

Dr. Lerner-Valtrex

I was just reviewing some of Lerner's info. He indicated that he is

treating people w/ CFS who test positive for EBV but negative for

Cytomegalovirus (CMV) w/ Valtrex. I would think that Valtrex would

be a lot less potentially dangerous than Valcyte. Lerner mentioned

the Montoya clinicals as support to his theory of one or more virii

causing 'CFS', and affecting the heart. It seems rather simple that

if one has decreased cardiac output and/or an abnormal 24 hour holter

monitor test that there very well might be a virus or two as the

culprit.

Anyway, for those of us who have elevated EBV titers and have tested

negative for CMV, I think Valtrex could be worth looking in to.

Anyone tried Valtrex??

Mike

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2:15 PM

January 21, 2008

I've been on Valtrex and Amantadine for 6 weeks for elevated HHV-6 titers

and re-activated EBV. My CFS doc thinks I'm too ill for Valcyte, my LLMD put

me on the Valtrex and Amantadine. Not sure I've noticed anything yet, but am

in a deep crash, and tend not to notice anything at this point. I need to

pull further out of this crash, if it's possible, before I start to notice

how anything impacts me.

Donna in NC

Dr. Lerner-Valtrex

>

> I was just reviewing some of Lerner's info. He indicated that he is

> treating people w/ CFS who test positive for EBV but negative for

> Cytomegalovirus (CMV) w/ Valtrex. I would think that Valtrex would

> be a lot less potentially dangerous than Valcyte. Lerner mentioned

> the Montoya clinicals as support to his theory of one or more virii

> causing 'CFS', and affecting the heart. It seems rather simple that

> if one has decreased cardiac output and/or an abnormal 24 hour holter

> monitor test that there very well might be a virus or two as the

> culprit.

>

> Anyway, for those of us who have elevated EBV titers and have tested

> negative for CMV, I think Valtrex could be worth looking in to.

> Anyone tried Valtrex??

>

> Mike

>

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> 1/20/2008 2:15 PM

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January 21, 2008

Hi Diane. I was off today so I listened to Lerner's latest lecture.

Valtrex works for EBV but not for CMV, so says Dr. Lerner. For CMV

you would have to go w/ Valcyte-the side effects of Valcyte, according

to the Roche website, are cancer and birth defects in animals.

Lerner said that he learned by trial and error that his patients w/

CMV were not improving on Valtrex.

Additionally, he also mentions HHV-6, which I believe does respond

to Valtrex. What puzzles me is that Montoya is able to get so many

people into the Valcyte trial considering the reported side effects

by the manufacturer. Possibly the dangers are dose/time related.

Mike C

>

> Yes. I have been on Valtrex for 2 months when EBV reactivated in

July. I had past CMV titers, not elevated at the time EBV

reactivated. I wonder why Valtrax isn't used for CMV...it's a virus

too.

> Diane in MI

> Dr. Lerner-Valtrex

>

January 21, 2008

Does anyone know what the deal with Valcyte and cancer is? Their literature says

that laboratory animals that were given Valcyte developed cancer. Does that mean

that they all developed cancer? Or just some? What does this mean for humans?

I'm pretty sure laboratory rats develop cancer pretty often no matter what you

feed them.

Why do I ask? I took Valcyte for 2 months using the Montoya dosage (1800mg for 3

weeks, 900mg after that) and had to stop because my gums started bleeding

profusely whenever I would brush my teeth. I also developed a painful infection

on one of my gums. Now it turns out that it might not be an infection and that I

might need to get a biopsy done on it. Needless to say, I'm a little freaked out

and wondering if the Valcyte has given me some kind of oral cancer. Would anyone

like to tell me something that will alleviate my concerns? I was desperate to

get my life back and get over CFS. After reading how much success Montoya was

having with it, I thought I'd try it. Both of my doctors said that it wasn't

that risky to take, so I gave it a shot. Hopefully that wasn't a huge mistake!

Dr. Lerner-Valtrex

>

January 21, 2008

I think Lerner said Valtrex takes 3 months or so to work. The good

news, he says, is that some of his patients w/ EBV and HHV-6 have

returned to normal activities (or at least normal social functiong)

after anti-viral treatment. I don't think he is too particular when

it comes to which antiviral med, he is more concerned w/ the

etiology of some CFS being virus related and affecting the heart,

especially cardiac output which he says is low before treatment and

is the cause for fatigue. A point he made is that one never sees

a heart patient who doesn't have some level of lowered

functioning or fatigue.

One last comment. His website sounds like it could be a sales pitch

for his clinic, but he explains generally what his treatment consists

of, so even if he is wrong I don't think he has ill intent as I

believe a lot of CFS 'product pusher' do.

Mike C

>

> I've been on Valtrex and Amantadine for 6 weeks for elevated HHV-6

titers

> and re-activated EBV. My CFS doc thinks I'm too ill for Valcyte, my

LLMD put

> me on the Valtrex and Amantadine. Not sure I've noticed anything

yet, but am

> in a deep crash, and tend not to notice anything at this point. I

need to

> pull further out of this crash, if it's possible, before I start to

notice

> how anything impacts me.

> Donna in NC

>

January 21, 2008

I believe the 2 month course of Valtrex set me on a healing path. Since I

completed it, EBV titers went down, and activity tolerance is near normal. I am

enjoying much less flu like aching (what little I have pretty much resolves with

magnesium). I have more good days than bad. On days when I'm not my best I

rest. Brain fog/ fatigue is minimal, some days none at all. Prior to the EBV

reactivation, I went thru 4 months of Diflucan, Ketek, Flagyl for Lyme disease.

Seemed to improve after that and began having less activity intolerance/

fatigue/brain fog. But relapsed last March after some increased family

stresses. Then after rest and pacing activity seemed to improve a little. May

- July more out of the ordinary family stress then began treatment for elevated

EBV titers in Aug. Finished in Oct and since then have been doing much better.

I have to think I needed that Valtrex to complete the recovery.

What I don't know is if this is indication that I am " cured " or just enjoying a

brief reprieve. No matter what it is, I appreciate the time to live with more

normal activity and better quality of life.

Diane in MI

Dr. Lerner-Valtrex

>

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2:15 PM

January 21, 2008

Hi, .

<campee@...> wrote:

>

> Does anyone know what the deal with Valcyte and cancer is?

***I've spoken to many who are being treated by Montoya with this

antiviral and one research doc who has CFS who recently started using

it. They all note the technical potential for cancer on as its

profile indicates for animals, but practically they don't feel it's

very much of a concern. On the other hand, reproductive capacity

being suppressed or eliminated as a result of Valcyte is a much

greater issue to consider.

Their literature says that laboratory animals that were given Valcyte

developed cancer. Does that mean that they all developed cancer?

Or just some?

***Yes, just some.

What does this mean for humans?

***Unknown, but the docs I mentioned don't practically regard cancer

as a high risk issue with this antiviral. I also know Montoya is

quoted as saying having HHV-6 infection itself is a risk for cancer so

taking Valcyte in this context may be lowering one's cancer risk.

I'm pretty sure laboratory rats develop cancer pretty often no matter

what you feed them.

>

> Why do I ask? I took Valcyte for 2 months using the Montoya dosage

(1800mg for 3 weeks, 900mg after that) and had to stop because my gums

started bleeding profusely whenever I would brush my teeth. I also

developed a painful infection on one of my gums. Now it turns out that

it might not be an infection and that I might need to get a biopsy

done on it.

***You may have had some lowering of your platelet numbers

momentarily, which is a potential side effect with Valcyte in some and

could explain a bit of excess bleeding like this.

Needless to say, I'm a little freaked out and wondering if the Valcyte

has given me some kind of oral cancer. Would anyone like to tell me

something that will alleviate my concerns?

***Oral cancers are often the vestige of smoker/drinker type behavior

over years and the mouth is a part of the body with a normally very

vigorous immune system, the last place I might suspect a cancer

unless, of course, you've smoked and drank a lot in your life.

I was desperate to get my life back and get over CFS. After reading

how much success Montoya was having with it, I thought I'd try it.

Both of my doctors said that it wasn't that risky to take, so I gave

it a shot. Hopefully that wasn't a huge mistake!

***I'd bet you'll be OK and may even be fine in revisiting Valcyte use

again at some point if you had any inkling it was helping reduce viral

infection.

***

January 21, 2008

Hi, Mike.

<yakcamp22@...> wrote:

Additionally, he also mentions HHV-6, which I believe does respond

> to Valtrex.

***Valtrex does not help with HHV-6. There is no drug that

specifically targets it, but Valcyte does cover 70% of its genome,

making it a worthy therapeutic agent to try in suspected HHV-6 CFS

cases in addition to the EBVers.

What puzzles me is that Montoya is able to get so many

> people into the Valcyte trial considering the reported side effects

> by the manufacturer. Possibly the dangers are dose/time related.

***It's documented use in transplant cases with CMV has helped clarify

the actual side effect profile for humans and those folk are far more

immune compromised compared to the typical PWC yet they tolerated

Valcyte fairly well. Thus, the rational for treating CFS with it

without inordinate risk is there.

>

> Mike C

>

***

January 21, 2008

" Diane " <dphf@...> wrote:

>

> I believe the 2 month course of Valtrex set me

> on a healing path. Since I completed it, EBV

> titers went down, and activity tolerance is near normal.

That's great Diane! If one has a chronic viral etiology,

then it makes sense to try an anti-viral. Looks like it was

successful in your case.

Carol

January 21, 2008

I was treated by Dr. Dantini (via phone consults and with my regular

doctor) in 2003 with Valtrex and had very good success with it. I was

taking 1 gm 3 times daily with Zantac one hour before AM and PM doses to

buffer my stomach. This really helped my swollen and sore throat glands

that would trigger from EBV, Parvo, herpes simplex and six viruses I

have that often reactivate. If I feel like I'm getting sick or my

glands hurt, I take the Valtrex (1-2 gm) for 2-3 days and it goes away.

It also helped that I was tested for food allergies and follow a food

allergy rotation diet (most of the time I'm good). I also find

Recuperation from Spain helps with the muscle cramps and post-exertional

malaise and fatigue issues. It also gave me back healthy hair and

fingernails.

If I haven't answered too many e-mails, my father-in-law is dying of

cancer right now and we are busy!

in La Selva Beach CA

yakcamp22 wrote: