treatment

August 30, 1999

Hi Gay K,

My name is Merril and I am a Mom-Mom as well as a mother. I am the one

with HCV. The problem is that I have so many other things that we are

not sure what symptoms belong to what!!!

My only advice would be to go with the LEAST treatment possible. Do not

let the medical professionals push you into anything you are not sure

about. It is OK to get other opinions from knowledgable people before

you agree to starting something!!

Don't be afraid to say " I need more information.. "

Your docs (and, of course, you) all want to help your little girl, but

it is too easy to jump into some kind of treatment only to find out that

there were reasons not to do it.

I am not in any way telling you do or don't do this or that, only tread

carefully. This is from my own experience.

Whatever you decide to do, believe in yourself and those who are helping

you to make her life better!!!

Merril

January 27, 2000

In a message dated 1/27/00 4:26:28 AM !!!First Boot!!!,

tricia73@... writes:

Hello Tricia:

I would say your Doctor is a quack and if I the list would let me I would

use much stronger language to describe your so-called Doctor.

I very likely contracted HCV the same way you did. I completed the combo

therapy six months ago, and so far my PCR is undetectable, and as far a

passing the viral to your sex partner I've been with the wife for over 20

years and thank god she is negative for HCV. My advice to you is GET ANOTHER

DOCTOR!

Take care,

Les

<<

Hi, I went to my GI yesterday to find out about starting combo. My

viral load is 280,000. My alt and ast are both elevated and my biopsy

showed stage 2 fibrosis. I think that is right. Anyway, He asked me how

my husband and I contracted Hep. I told him I was not sure, my husband

had some jailhouse tatoos when I met him and we both were ex-IV drug

users.

He said that people that contracted the disease through use of a needle

were not as responsive to treatment as others. Is there any research on

this? Is this true? Would I be wasting my time to try the therapy?

My husband passed away in October from brain cancer, so there is just

me. I am not sure that I will ever begin another relationship but if I

do I don't want this hanging over my head!! If I take the combo and get

results, what are the chances of my passing this on to someone else?

Please help,

PEACE,

Tricia >>

January 27, 2000

Dear Tricia,

Get yourself a new doctor. This one obviously doesn't have a clue!

Love,

Bren

January 27, 2000

In a message dated 01/27/2000 7:29:28 PM Eastern Standard Time,

LEST2001@... writes:

<< He said that people that contracted the disease through use of a needle

were not as responsive to treatment as others. Is there any research on

this? Is this true? Would I be wasting my time to try the therapy? >>

Tricia,

RUN as fast as you can to a new doctor. Sounds to me like he is prejudiced

against IV drug users that is why he is discouraging you away from treatment.

Although I have never used IV drugs, I know plenty of heppers who have and

they are responding to treatment just as well as folks who never used drugs.

It does not matter how you got it. HCV is HCV and the treatment is the same

no matter what the cause. The real thing here is makes no difference how you

got it, the fact is that you do. Keep coming to the list and any other

sources of info you can on the Internet. Knowledge is power. The more you

know, the better prepared you are to make logical, informed choices regarding

your medical care and treatment options. I can supply you with tons of info,

so please E-mail me is you wish.

Love and peace,

Peggy

January 27, 2000

Les,

Thanks I would love to, but like many of us on our HMO's, He is the only doc on

my list. I have to use him. I think I will give him a hard time and force him

to

give me the option.

Glad to hear it about your wife, my husband also had Hep. We didn't know if we

got it through drug use or what! He was diagnosed first and was so upset when

he

thought he had given it to me. I wish he were here so I could tell him what you

told me. It would make him feel so much better. Well now maybe he knows

anyway,

huh?

Thanks again for the info.

PEACE,

Tricia

LEST2001@... wrote:

> From: LEST2001@...

>

> In a message dated 1/27/00 4:26:28 AM !!!First Boot!!!,

> tricia73@... writes:

> Hello Tricia:

> I would say your Doctor is a quack and if I the list would let me I would

> use much stronger language to describe your so-called Doctor.

> I very likely contracted HCV the same way you did. I completed the combo

> therapy six months ago, and so far my PCR is undetectable, and as far a

> passing the viral to your sex partner I've been with the wife for over 20

> years and thank god she is negative for HCV. My advice to you is GET ANOTHER

> DOCTOR!

> Take care,

> Les

> <<

> Hi, I went to my GI yesterday to find out about starting combo. My

> viral load is 280,000. My alt and ast are both elevated and my biopsy

> showed stage 2 fibrosis. I think that is right. Anyway, He asked me how

> my husband and I contracted Hep. I told him I was not sure, my husband

> had some jailhouse tatoos when I met him and we both were ex-IV drug

> users.

>

> He said that people that contracted the disease through use of a needle

> were not as responsive to treatment as others. Is there any research on

> this? Is this true? Would I be wasting my time to try the therapy?

>

> My husband passed away in October from brain cancer, so there is just

> me. I am not sure that I will ever begin another relationship but if I

> do I don't want this hanging over my head!! If I take the combo and get

> results, what are the chances of my passing this on to someone else?

>

> Please help,

>

> PEACE,

> Tricia >>

>

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

January 27, 2000

Les,

Thanks I would love to, but like many of us on our HMO's, He is the only doc on

my list. I have to use him. I think I will give him a hard time and force him

to

give me the option.

Glad to hear it about your wife, my husband also had Hep. We didn't know if we

got it through drug use or what! He was diagnosed first and was so upset when

he

thought he had given it to me. I wish he were here so I could tell him what you

told me. It would make him feel so much better. Well now maybe he knows

anyway,

huh?

Thanks again for the info.

PEACE,

Tricia

LEST2001@... wrote:

> From: LEST2001@...

>

> In a message dated 1/27/00 4:26:28 AM !!!First Boot!!!,

> tricia73@... writes:

> Hello Tricia:

> I would say your Doctor is a quack and if I the list would let me I would

> use much stronger language to describe your so-called Doctor.

> I very likely contracted HCV the same way you did. I completed the combo

> therapy six months ago, and so far my PCR is undetectable, and as far a

> passing the viral to your sex partner I've been with the wife for over 20

> years and thank god she is negative for HCV. My advice to you is GET ANOTHER

> DOCTOR!

> Take care,

> Les

> <<

> Hi, I went to my GI yesterday to find out about starting combo. My

> viral load is 280,000. My alt and ast are both elevated and my biopsy

> showed stage 2 fibrosis. I think that is right. Anyway, He asked me how

> my husband and I contracted Hep. I told him I was not sure, my husband

> had some jailhouse tatoos when I met him and we both were ex-IV drug

> users.

>

> He said that people that contracted the disease through use of a needle

> were not as responsive to treatment as others. Is there any research on

> this? Is this true? Would I be wasting my time to try the therapy?

>

> My husband passed away in October from brain cancer, so there is just

> me. I am not sure that I will ever begin another relationship but if I

> do I don't want this hanging over my head!! If I take the combo and get

> results, what are the chances of my passing this on to someone else?

>

> Please help,

>

> PEACE,

> Tricia >>

>

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

January 28, 2000

The only thing along this line that I remember seeing is that if you got it

from a blood transfusion it might progress faster than usual.

And I don't even know if that is true! Claudine

>From: " alley/ " <alleypat@...>

>Reply-Hepatitis Conelist

><Hepatitis Conelist>

>Subject: RE: Treatment

>Date: Sat, 29 Jan 2000 14:38:07 -0600

>

>Actually... there have been studies and stats that say how you contracted

>the disease MAY determine the rate in which you progress. I'll research my

>files and post what I find. I know I've read it somewhere!

>

>alley/

>ICQ 12631861

>alleypat@... <mailto:alleypat@...>

>http://www.mailbonus.com/index.cfm?ref=alleypatflash (DOT) net

>

______________________________________________________

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

January 28, 2000

Dear Gail,

I guess I'll be better apt to let everyone know if IV drug users share a

common genotype on Feb. 9th. That's when I get the results of mine. I do have

friends that are IV Drug users who aren't of the same Genotype. I think

that's more of a generalization then fact.

Love,

Bren

January 28, 2000

In a message dated 1/28/00 9:10:17 PM! First Boot!, alleypat@... writes:

<<

Actually ... there have been studies and stats that say how you contracted

the disease MAY determine the rate in which you progress. I'll research my

files and post what I find. I know I've read it somewhere!

alley/

ICQ 12631861 >>

Yes, you are right, and from what I remember I believe that the majority

of IV drugs user who contract HCV are genotype 3a and I also believe that 3a

is a very responsive to treatment. I could be wrong, but I'm almost sure I

read it somewhere, I just can't remember where.......so what else is new LOL!

Life is short, and the world is rough, and if your going to make it you

gotta be tough!

Have a good one,

Les

January 28, 2000

In a message dated 01/28/2000 5:06:15 PM Eastern Standard Time,

Samples@... writes:

<< About genotyping-did you have to go to a research center

for this or is it now available to the general population of docs/labs?

I've never had it done. At the time that I underwent treatment genotyping

was still only available at specialized centers.

>>

Gail,

Genotyping is still done at specialized centers but most docs have access to

these centers and ship the blood samples for analysis.

Peggy

January 28, 2000

In a message dated 01/28/2000 4:11:25 PM Eastern Standard Time,

goez@... writes:

<< I do have

friends that are IV Drug users who aren't of the same Genotype. I think

that's more of a generalization then fact.

I agree with this statement. Actually, most of the IV drug users that I know

are genotypes 1 or 2. I know I have some info that states that the vast

majority of the people in the US are type 1, then comes 2 and three the least

prevalent. I seem to recall reading that most folks with type 3 are from the

underdeveloped countries. Since treatment is not being done in these areas,

success rates for type 3 are not really comparable to studies done on types 1

and 2.

I will forward info as soon as I locate it.

Love,

Peggy

January 28, 2000

In a message dated 01/28/2000 4:11:25 PM Eastern Standard Time,

goez@... writes:

<< I do have

friends that are IV Drug users who aren't of the same Genotype. I think

that's more of a generalization then fact.

I agree with this statement. Actually, most of the IV drug users that I know

are genotypes 1 or 2. I know I have some info that states that the vast

majority of the people in the US are type 1, then comes 2 and three the least

prevalent. I seem to recall reading that most folks with type 3 are from the

underdeveloped countries. Since treatment is not being done in these areas,

success rates for type 3 are not really comparable to studies done on types 1

and 2.

I will forward info as soon as I locate it.

Love,

Peggy

January 28, 2000

Hi all

Well, it did not take me as long as I thought to find the genotype

information that I promised. Here is a pretty concise write study.

Genetic Variation and HCV Genotyping

Even in a single infected individual, HCV does not exist as a homogeneous

species. Heterogeneous genomes - " quasispecies " - resulting from mutations

due to high error rates in RNA replication are found within the same host.

Many important biological features of several viruses are attributable to

their quasispecies nature, including vaccination failure, persistent

infection, and resistance to antiviral drugs. 38 The amount of diversity of

the quasispecies population has also been found to be related to the

progression to liver disease.

The most striking feature of HCV is its ability to persist in the host. The

mechanism(s) of viral persistence are unclear but cannot include viral

integration into the host genome as with certain other viruses due to the

lack of a DNA intermediate in its life cycle. Instead, persistence appears to

result from HCV's ability to mutate rapidly under immune pressure, giving

rise to related but immunologically distinct variants. 11 Any one of these

variants can become the predominant strain, and coexistence of multiple

quasispecies allows HCV to escape the host immune response.

Most mutations occur in a short, hypervariable region of the E2/NS1 domain.

The region represents only 8% of the domain but accounts for approximately

half of the nucleotide changes in the entire envelope region. 39 Because of

the occurrence of this hypervariable region within the envelope where it

would be most likely to be exposed to antibody, mutations in this region may

serve to evade an immune response. 11,39 It has been reported that the

nucleotide substitution rate within the hypervariable region rises during

acute infection at a time when HCV RNA levels in the serum are decreasing,

possibly due to a host immune response. 40 There is also evidence that HCV

can escape immune clearance by down-regulating its replication while

persisting quiescently in the liver. 11

Genotypic analysis and prevalence

Traditionally, viruses have been classified according to antigenic

characteristics, but with recent advances in molecular biology, genotypic

classification through the analysis of genomic variation is now possible.

Variations in the HCV genome fall into a series of specific patterns that

have been classified into genotypes. 41 Among the different HCV genotypes,

the sequence of the 5' NC region is relatively conserved and is most often

applied for diagnosis of HCV infection by PCR. In contrast, the sequences of

NS3, NS5, and core regions are more variable and are therefore often used to

define and distinguish among the HCV genotypes. 42

Studies indicate that there are nine major HCV types (according to the

general classification) designated 1 through 9. 18 Some of these types are

further divided into subtypes. The potential significance of this becomes

apparent when considering virus-host interactions, severity of infection, and

sensitivity to treatment. The clinical importance of HCV lies in its

persistence and ability to cause chronic liver disease. The dramatic

disparities in HCV disease course among infected persons and differences in

disease patterns between countries with divergent dominant genotypes raise

the possibility that the existence of various strains of HCV may be a

critical factor in this variability.

In one study, 98 patients in the United States with chronic hepatitis C

infection were examined (Fig 1). 41 Type 1 was the dominant genotype, present

in 74% of patients, almost evenly divided between subtypes 1a and 1b. Two

additional patients had a dual infection with types 1 and 2 while another

case had both subtypes 1a and 1b.

One patient was untypeable. There was no correlation between infecting

genotype and presumed cause, serum indices of necroinflammatory activity, age

or sex of the patients, or known duration of infection. Patients with HCV

genotype 2 had more severe liver disease histologically than did patients

with other genotypes but paradoxically had significantly lower circulating

levels of hepatitis C viral RNA. 41 A second, independent study, also

performed in the United States, found that HCV genotype 1 represented 70% of

viral isolates, confirming that it accounts for the majority of infections in

American patients. 43

Fig 1. -- Prevalence of HCV genotypes and subtypes among American patients

(N=98). 41

Segments in which more than one genotype or subtype appears represent mixed

infections.

Another study performed in Japan (using study-specific genotype nomenclature)

demonstrated striking differences in the distribution of HCV genotypes in

various countries. 44 This group classified HCV into four main types based on

variations in the NS5 region and studied the prevalence of these types in

Japan, China, Europe, Brazil, and the United States. Results revealed that

the prevalence of one particular strain was the highest in every country

except the United States, making it the probable major type of HCV worldwide.

Another strain was rare in Japanese and Chinese samples but common in samples

from Western countries, suggesting the existence of a Western HCV type.

Similarly, a third strain was rare in Western samples but common in Japanese

and Chinese samples, suggesting the existence of an Eastern HCV type. Because

of the study-specific classification utilized, however, comparisons to the

results of other studies are not possible.

Despite reports of an interplay between genotype and disease severity,

patients with the same genotype can have very different clinical outcomes.

Thus, differences in genotype may represent only part of a complex

interaction between host and virus. In addition, the effect of genotypes may

be indirect in that they may reflect differences in viral burden rather than

differences in strain virulence. 11 There is, however, evidence for genotypic

variability in the response of HCV to therapy.

Serotyping

Serotype-specific immunodominant epitopes have recently been mapped to the

NS4 region of HCV. 45 Synthetic peptides from this region can be used as

capture antigens in an ELISA assay to differentiate serologically among

infections with the various types of HCV. Blocking antibody or competing

peptide is used to overcome cross-reactivity. The results of genotypic and

serologic analyses are well correlated for genotypes and serotypes 1, 2, and

3, which are predominant in the U.S. population. 46 The value of serotyping

relative to genotyping remains to be determined.

There is also a very good pie chart showing the distribution of genotypes in

the US. Unfortunately it could not be copied but can be viewed at this

location <A HREF= " http://hepatitis-central.com/hcv/genotype/genotyping.html " >H

epatitis Central, Genetic Variations and HCV Genotyping</A>

http://hepatitis-central.com/hcv/genotype/genotyping.html

Peggy

January 28, 2000