Re: Valganciclovir (This will blow your socks off!)

May 19, 2006

For 60 tablets it is $2,160.00!!!!!

Janet,

Roche has a patient assistance program for many of their drugs. I

checked and Valcyte is there:

http://www.rocheusa.com/products/index.html

Of course your doc would have to Rx it for you and their criteria is

based on household income or used to be anyway. If you qualify they

will send it to your doctor's office. Your doc's office would have to

call them and request the form. I received Klonopin from them before

I was married and now I'm under my husband's medical plan. Good luck,

Terry

May 19, 2006

HI Terry,

Thank you for the help. Now if I can convince my doc, I am ready to go.

Janet

in San Diego

terryrama <terryrama@...> wrote:

For 60 tablets it is $2,160.00!!!!!

Janet,

Roche has a patient assistance program for many of their drugs. I

checked and Valcyte is there:

http://www.rocheusa.com/products/index.html

Of course your doc would have to Rx it for you and their criteria is

based on household income or used to be anyway. If you qualify they

will send it to your doctor's office. Your doc's office would have to

call them and request the form. I received Klonopin from them before

I was married and now I'm under my husband's medical plan. Good luck,

Terry

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.

May 19, 2006

Ganciclovir is one of the drugs mentioned for use in Lerner's patent.

Have you met the criteria for low cardiac output that he says is

necessary to determine before using antivirals? I am very interested

because I think this could be the answer for a lot of us. Also,

I thought ganciclovir was IV only. And the cost for the IV

administration would make the cost even more onerous, so I am

glad to see you can get it in tablet form.

Mike C.

>

> HI Terry,

>

> Thank you for the help. Now if I can convince my doc, I am ready

to go.

>

> Janet

> in San Diego

May 19, 2006

HI Mike,

I am new to all this, so please bear with me. Can you tell me who Lerner is

and why he feels a criteria for low cardiac output is necessary to determine

before using antivirals???

And yes, you can get it in tablet form. But there are some very serious side

effects, that make me pretty nervous!

Janet

in San Diego

yakcamp22 <yakcamp22@...> wrote:

Ganciclovir is one of the drugs mentioned for use in Lerner's patent.

Have you met the criteria for low cardiac output that he says is

necessary to determine before using antivirals? I am very interested

because I think this could be the answer for a lot of us. Also,

I thought ganciclovir was IV only. And the cost for the IV

administration would make the cost even more onerous, so I am

glad to see you can get it in tablet form.

Mike C.

>

> HI Terry,

>

> Thank you for the help. Now if I can convince my doc, I am ready

to go.

>

> Janet

> in San Diego

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.

May 20, 2006

Hi. In short, Lerner has a patent for treating CFS and

ganciclovir is one of the treatments. He is an MD, and I think

he *had* CFS and got rid of it w/ antivirals. YOu don't take the

antivirals for ever, either. So even if you take valganciclovir

for four months at a cost of $1,200 a month or so, and you are

cured, I think there would be a lot of us that would jump on that

chance, me included. Let me see if I can get the link to his

patent, it is 5 million something or other.

Here is the link, sroll down below the advertising. You can

probably Google up 'freepatent' and search for Lerner. Some other

member may be able to give you a better link because I just

reconfigured my computer to give me administrator priveleges. Oh,

forget about that, if this doesn't work I will send another email

from my other user acct. shortly. OK, i am an idiot an will send

another message shortly.

Mike C

> >

> > HI Terry,

> >

> > Thank you for the help. Now if I can convince my doc, I am

ready

> to go.

> >

> > Janet

> > in San Diego

May 20, 2006

Here is the link. Don't worry about the junk at the top. Scroll

down to patent 5 million and something w/ Lerner's name beside it.

http://www.freepatentsonline.com/6894056.html?highlight=5213106

> > >

> > > HI Terry,

> > >

> > > Thank you for the help. Now if I can convince my doc, I am

> ready

> > to go.

> > >

> > > Janet

> > > in San Diego

>

May 20, 2006

If this is referring to that recent writeup about CFS and antivirals,

working in 9 of 12 patients, I think there is an oral drug that

metabolizes INTO gancyclovir in the body. It has a slightly longer

name but basically, it allows you to get oral treatment.

I wonder if you would need to be tested first for elevated HHV titers etc.

It certainly could be involved in cases where people take antibiotics

and don't get better. And/or who knows if it even works in some way to

boost immunity or to target microbes, who really knows.

> > >

> > > HI Terry,

> > >

> > > Thank you for the help. Now if I can convince my doc, I am

> ready

> > to go.

> > >

> > > Janet

> > > in San Diego

>

May 21, 2006

---At www.icanrx.com a canadian pharmacy that i use i priced Valcyte

for u at $1,511.11 for 60 tabs. still very expensive.

zuzu

In , " terryrama " <terryrama@...>

wrote:

>

> For 60 tablets it is $2,160.00!!!!!

>

> Janet,

>

> Roche has a patient assistance program for many of their drugs. I

> checked and Valcyte is there:

> http://www.rocheusa.com/products/index.html

>

> Of course your doc would have to Rx it for you and their criteria

is

> based on household income or used to be anyway. If you qualify

they

> will send it to your doctor's office. Your doc's office would have

to

> call them and request the form. I received Klonopin from them

before

> I was married and now I'm under my husband's medical plan. Good

luck,

>

> Terry

>

May 21, 2006

Does anyone know how often it should be taken? Once a day, three

times?

Mike C

>

> ---At www.icanrx.com a canadian pharmacy that i use i priced Valcyte

> for u at $1,511.11 for 60 tabs. still very expensive.

> zuzu

>

May 21, 2006

My message below was in referrence to a message about Lerner's

patent that was posted on this list. You make a good point in one

of your other messages that even tho Gancyclovir is harsh or maybe

dangerous, remember, we have had two list members die this year-

that we know of. So maybe, maybe G is worth the risk assuming

you meet the prescribing criteria set forth in Lerner's patent.

We are going to recover if we wait for the CDC to help.

Mike C

> >

> > Hi. In short, Lerner has a patent for treating CFS and

> > ganciclovir is one of the treatments. He is an MD, and I think

> > he *had* CFS and got rid of it w/ antivirals. YOu don't take the

> > antivirals for ever, either. So even if you take valganciclovir

> > for four months at a cost of $1,200 a month or so, and you are

> > cured, I think there would be a lot of us that would jump on that

> > chance, me included. Let me see if I can get the link to his

> > patent, it is 5 million something or other.

May 21, 2006

I don't see why we have to limit ourselves to Gancyclovir, or any

dangerous antiviral when there are so many far safer natural products to

try, and many that help people quite a lot. PWC usually have unbalanced

livers, why should we use treatments that are health trade-offs? We

need all the health we can keep.

Here is another natural antiviral I have tried that does seem to help -

combine Lysine (amino acid) with Vitamin C. Supposedly this is a Herpes

class viral blocker. I have also taken a Proline/Lysine combination

with high-dose Vitamin C. The effect of 'feeling better' seems to last

for a few hours.

Certainly there must be many other natural antivirals to explore.

What I believe Lerner revealed was that a strong and properly targeted

antiviral can help a large subset of PWC. That is the main point for

me, not the use of the specific antiviral he experimented with.

--Kurt

Re: Valganciclovir (This will blow your

socks off!)

My message below was in referrence to a message about Lerner's

patent that was posted on this list. You make a good point in one

of your other messages that even tho Gancyclovir is harsh or maybe

dangerous, remember, we have had two list members die this year-

that we know of. So maybe, maybe G is worth the risk assuming

you meet the prescribing criteria set forth in Lerner's patent.

We are going to recover if we wait for the CDC to help.

Mike C

> >

> > Hi. In short, Lerner has a patent for treating CFS and

> > ganciclovir is one of the treatments. He is an MD, and I think

> > he *had* CFS and got rid of it w/ antivirals. YOu don't take the

> > antivirals for ever, either. So even if you take valganciclovir

> > for four months at a cost of $1,200 a month or so, and you are

> > cured, I think there would be a lot of us that would jump on that

> > chance, me included. Let me see if I can get the link to his

> > patent, it is 5 million something or other.

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.

May 21, 2006

Kurt-you make a great point. I even thought about asking the list

re natural antivirals. However, I believe that *if* we are talking

about a virus that attacks the heart, vit C, salt, Lysine, etc. isn't

going to do the job.

On a personal note, I am undergoing extreme post exertional fatigue

after over-activity yesterday. My resting heart rate is very high

right now, and this happens every time I over exert myself. I have

probably spent $10,000 on magnesium, coconut oil, lysine, rhodiola

rosea-the list goes on and on. Some were real expensive like

CoQ10.

When you think about some PWCs and all of the money that they spend

on *special* supplements as well as traveling (and even moving in

some cases to be closer to their CFS doc guru), the money isn't an

issue even tho you don't bring that up. The prescription antivirals

are surely for a subset of PWCs, and especially for those who have

tried all of the natural antivirals without success. It is a matter

of being desperate and not wanting to live the rest of one's life

without getting better. It is not for everyone, but I think it is

worth discussing.

Mike C (sorry this was so long, but for those of us who thing

their 'CFS' is heart related, it is important)

>

> I don't see why we have to limit ourselves to Gancyclovir, or any

> dangerous antiviral when there are so many far safer natural

products to

> try, and many that help people quite a lot. PWC usually have

unbalanced

> livers, why should we use treatments that are health trade-offs?

We

> need all the health we can keep.

>

> Here is another natural antiviral I have tried that does seem to

help -

> combine Lysine (amino acid) with Vitamin C. Supposedly this is a

Herpes

> class viral blocker. I have also taken a Proline/Lysine

combination

> with high-dose Vitamin C. The effect of 'feeling better' seems to

last

> for a few hours.

>

> Certainly there must be many other natural antivirals to explore.

>

> What I believe Lerner revealed was that a strong and properly

targeted

> antiviral can help a large subset of PWC. That is the main point

for

> me, not the use of the specific antiviral he experimented with.

>

> --Kurt

May 22, 2006

I'm not so sure I agree--if he is not exaggerating those were pretty

remarkable results, and many on here take natural antivirals. Except

perhaps the high dose of melissa officinalis that foxhillers took,

sometimes high dose herbs can be very effective. But it may be that

this drug is not only targeting HHV< but for all we know, it may

target other microbes. Borrelia is a weird beast with fungal antigens

and perhaps viral antigens. Mycoplasma in turn was for years

considered half virus half microbe. We don't really know for sure what

this specific drug did. I hope he follows up with further studies. It

would be nice also if a local doctor tried it on some patients,

perhaps someone like Dr. Enlander.

> > >

> > > Hi. In short, Lerner has a patent for treating CFS and

> > > ganciclovir is one of the treatments. He is an MD, and I think

> > > he *had* CFS and got rid of it w/ antivirals. YOu don't take the

> > > antivirals for ever, either. So even if you take valganciclovir

> > > for four months at a cost of $1,200 a month or so, and you are

> > > cured, I think there would be a lot of us that would jump on that

> > > chance, me included. Let me see if I can get the link to his

> > > patent, it is 5 million something or other.

>

> 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.

>

May 22, 2006

Hi Mike,

I agree in principle with this, but want to point out that after all

those supplements, all though you are not well, you are still here.

What if, instead, you had used harsh drugs and damaged your liver

seriously? With what we know about the role of neurotoxins in our

illness and the importance of even a partly functional liver for their

detox, I think that the long-term safety of even an effective treatment

is also a point worth serious consideration. Particularly for us, as

people with compromised metabolism seem to get the side-effects worse

than the average person. If you have a healthy liver, then maybe you

are in the lucky subset that can benefit from strong antivirals. But I

think many of us need to try harder to find good natural therapies. For

example, I know a PWC who recovered using essential oils and undenatured

whey protein. So maybe there are essential oils with strong antiviral

effects.