THE POSSABILITY OF HEP-C EVER CLEARING FROM A GENOTYPE ONE?

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*GED* - 08 Dec 2006 12:47 GMT

I have hep-c and i have had it for twenty three or so years.I found out
about this stinking Virus six years ago when my veins in my stomach
burst and lost me six pints of blood.However i have been under a
specialist since then Dec 2001 what is troubleing me is although i went
through the year of Interferon TX Treatment with Ribarvirin.Now towards
the end of this treatment my specialist told me i was clean.Also he
told me the same thing last July.When i went back again for another
blood test i was informed that the Virus was back again.Even though i
don't Drink/Take Drugs.I get the impression
that for whatever reason he seems to want to sh.t me that things are
getting better.After he told me last July the Virus was completely gone
i was ecstatic,in fact like i had been born again.Around this time i
had been corresponding with a American hep-c web site,after i had told
them what had happened they told me NOT to BELIEVE it.As i as i
recently found out [again not from my Doctor] but
from America i am GENO TYPE ONE and this geno type never ever clears
from the blood or Liver.This
is twice now that i have been told that i am clean,I think it is very
cruel and out of order to be treated like this.I was in the Royal
Marines for seven years i don't need things sugar coating for me.My Doc
knows this i was wondering why he has done this to me.I got very very
depressed after i found out it was a lie and i am now looking to change
my specialist.Is there anybody out there who could offer any
advice or insight into what i should do.

Reply to this Message

Cactus Jammies - 08 Dec 2006 16:34 GMT

Hi Ged,
Your mind has in some dark places. I don't blame you. I relapsed as
well, under similar conditions but not with the stomach bleeding initially
or since. My infection was picked up at a retirement medical I had about
one year before I entered tx. The only condition that has manifested itself
generally is that I have what I suspect is Hep C induced arthritis. It has
been difficult for me to find information about keeping healthy until a
better and more completely effective anti-viral treatment widely gains use.
My liver at the last auguring, showed Steatosis, which seems to become more
pronounced in those infected with Hep C, and which I have been concentrating
on trying to deal with. There is no way to gauge the proliferation or
advancement of the condition other than by another puncture in the liver.
As well, I am concerned about the advancement of fibrosis to cirrohis while
I am waiting. I have become to look at the situation for me as a course
where I must try to loosen up the fatty deposits accumulating in my liver,
and try and somehow flush the rest of my liver with an activity (?) that
removes the scar tissue (fibrosis) and allows the healthy liver cells to
repopulate, if possible. As for the arthritic condition, I understand that
some intial experiments have been performed with anti-inflammatory
medications that could help dislodge what ever is clogging up the ligaments
in my fingers.

I have copied this message to the alt.support.hepatitis-c newsgroup, as
there is more interaction with those who have or are dealing with Hep C, the
whole gamut.

best wishes,

cactus jammies (Bob)
////////////////////////////////////////////

>I have hep-c and i have had it for twenty three or so years.I found out
> about this stinking Virus six years ago when my veins in my stomach
[quoted text clipped - 20 lines]
> my specialist.Is there anybody out there who could offer any
> advice or insight into what i should do.

Reply to this Message

eric - 09 Dec 2006 13:19 GMT

Ged , you got some bad info . Geno 1 can be cleared the same as 2,3,4,
. Sometimes people clear during tx ,treatment or while actively taking
meds . If you clear by week 12 they call you a responder with a good
chanch of staying clear. For many people even after responding to tx
while on meds it comes back after tx stops . If you can make 6 months
post tx with a negitive pcr you have the prize geno 1 or not . I was a
1b got it in 1976 . Treated in feb 2002 to july 2003 18 months .It took
me 8 months to get a 1st viral neg then i did 10 more months . That
number came about by reading studies and putting stats togther. I have
been negitive for 4 plus years now. So if your past 6 months post tx
and still neg your cured. People have different positions on this .The
CDC and the Pasture institute call it a cure with a 6 month post tx
negitive and so do i.. It gets confusing when you clear during tx then
go back in 6 months and its back you responded while on tx but the
responce was not complete .I have read studys that say after a 6 month
post tx neg its a complete cure with a possible 20 yr immunity. Their
are predictors for this such as a 12 week neg is a good sign. If it
takes longer then 12 weeks for a first neg then you have to start
counting the rest of your tx time from that point 36 weeks at least
from a 1st neg . 48 is much better as the tx protocol stinks . You may
have to do some arm twisting if you dont clear by month 3 and you would
be wise to go on infergen at that point. On a second tx infergen is the
only way to go using some other math to figgure your total tx time and
not use their stinkin protocol. The virus will show with super
sensitive time base pcr or quntasure as its called in the US at 4 weeks
post tx in most . To protect my 18 months of fun i did a pcr at 4 weeks
post tx . If that would have shown pos i would have restarted tx at
that point and finished out two years doing the last 4 months of my
original 18 makeing it two years Wait 6 months for that 1st post tx pcr
and if pos you have zero chance of a tx restart by then the hcv is back
in hi gear .At 4 weeks post tx pos its still week and trying to come
back in full force ,give it much more time and its re grouped and
called in more troops. So you want to keep it in retreat by a tx
restart at a week 4 post tx pos pcr . Thats a second chance to turn a
loss into a win and i have seen alot come back pos post 4 week tx and
go on to finish 72 weeks and pull a win from a loss If that didnt
finish it off for me i knew current meds were of no use to me and i
would have to wait till the next generation of meds . I had one screw
up with my tx and that was i should have stuck to my original plan and
used infergen 5 x as potent as the other two pegintron or pegsays.
Anyway things worked out on pegintron it just caused me to have a
longer tx . Had i used infergen i figgure i could have done14 months
total with a win and not have had to worry about the initial clearing
the virus as i did on pegintron. I was classed as a non responder,
anyone taking longer then 3 months for that 1st neg pcr is considered a
non responder by most standards today and lots of time pulled from tx.
Luckey for me i had worked in a viral research lab for a bit and knew
quite a bit more then most docs. I did alot of arm twisting to get my
way and use the tx protocol i came up with or i would still be positive
for hcv. Very important to get this the 1st tx before the virus picks
up med resistance making a 2nd tx harder to pull a win from but far
from impossible done right. Their are a few good tricks i learned
working in the lab. So if you have been hcv neg for at least 6 months
post tx your cured. I suspect its a much shorter time from 4 weeks post
neg to 3 months post tx neg . At 4 weeks post tx neg for me i knew the
battle was won. Eric

Reply to this Message

*GED* - 09 Dec 2006 15:13 GMT

> Ged , you got some bad info . Geno 1 can be cleared the same as 2,3,4,
> . Sometimes people clear during tx ,treatment or while actively taking
[quoted text clipped - 52 lines]
> neg to 3 months post tx neg . At 4 weeks post tx neg for me i knew the
> battle was won. Eric

Eric and Cactus Jammies.
Thank you both for your response texts,they both offer me exactly what
i was hoping for.When i thought about writing this i [if somebody had
asked me] i couldn't have had better
advice from anywhere.Firstly Cactus the Arthritic compliants are news
to me,although it does not surprise me.When you mention a "Fatty Liver"
prior to me being diagnosed i had a
couple of spells in Hospital and whenever i had Blood taken the LFT
test always came back
suffering with a fatty Liver on the footer of the sheet.When i asked a
Staff Nurse then a junior
Doctor what it meant,they said it wasn't anything to worry about and if
i live my life propper
it should return to normal.[at this time in my life,i worked away
sometimes abroad and i was
a heavy Drinker.I haven't had a drop since 4/8/01] I did notice a few
years ago the Fat did indeed leave as i remember having chronic
Dihoreah for three days,and the upshot of this was i passed the
substances [fat] natural.Also since i have been dry,i have felt a
definate benefit in all round health.There is not one thing i could
single out and give credit to.Although for quite a while ago i started
taking Milk Thistle capsules,and i can safely say that at first they
really did help me and my complaint [at the time i was,from time to
time suffering from a hot itchy Liver].The Milk Thistle dealt with this
complaint [or seemed to] and
the Hot or Itchy Liver has not returned.However i must give this word
to the wise,while i was
taking the capsules six per day everything seemed alright.After
thirteen/fourteen months i
started getting a sick feeling as well as nearly fainting and complete
mental and physical
tiredness.Sometimes i would go two to three days asleep and i am never
normally like that
in fact i'm always the opposite,and i can't sleep enough.Anyway i
tracked this feeling down to the Milk Thistle,i asked the factory [one
of five] how they regulate the doses in the capsules.The manager was
honest with me and he said they can't properlly,what happened
with me was the dose i was taking was far too high.Given also that some
capsules contained almost twice the stated ammount on some days i was
taking four times what i should on a already struggling Liver.The main
organs in my body could not process the Thistle quick enough.Anyway it
nearly killed me as one day i couldn't be woken,and when i
did it was only for a few seconds,so i haven't taken anything but
prescribed medicine since.
Like i said at first it was brilliant with that itch gone i was very
very pleased,so Cactus the
same just might help you friend just be very carefull dosewise.

Eric thank you for your stats.Sometimes i think too much and this leads
me to paranoia when i can not see the good in anything.Although i must
admit this Virus has made me feel
like a leper,and somehow detached from the rest of society.As i was
walking around for many years not knowing i had a virus of any
description,the only thing was i felt terrible all
the time,Tired/weak/lethargic the thing was at the time i had to make a
living through speed
and very hard work.Bricklaying what we were doing where everything was
price work was very difficult.I visited the Doctor about six times to
complain about my symptons [or lack of
them!!!].All they ever said was adjust my diet and get more sleep and
cut down on the drinking.They did send me for two bloodtests though
both came back with the fatty Liver and nothing else of note.One i got
done in Hospital in 1987 did mention a parasitic type of organism
latching on to some of my blood cells i forget what this was termed.I
hadn't a clue
about Hep either A,B,or C !.I vividly remember being very happy that i
didn't have HIV or something like it [which of course i did] and i was
just gratefull to get on working and living.I was of the mind by then
that my tiredness was due too age and the graft we were doing,laying
9inch Concrete blocks these weigh 9 stone each,and we were on them for
twenty one months without a break.As Bricklaying wise that is where the
Money is,i remember falling asleep on Friday night still in work
clothes and not waking up till Sunday morning at 7-30 am !!.Anyway i
got to the night the Vein burst and it all fitted in together.I will
now go back and see my specialist as he is a good man,and i had no
right to question
his motives like i did.Although it is very difficult to get your
opinions over in the twenty mins
i get to see him for every six months.What i will also do now is wait
to see if some clever research Lab can come up with a new anti Virus
immune system booster.Thanks for the texts they have helped me a great
deal CHEERS *GED*

Reply to this Message

Cactus Jammies - 11 Dec 2006 01:59 GMT

> Eric and Cactus Jammies.
> Thank you both for your response texts,they both offer me exactly what
> i was hoping for.When i thought about writing this i [if somebody had
> asked me] i couldn't have had better
> advice from anywhere.

> Firstly Cactus the Arthritic compliants are news
> to me,although it does not surprise me.When you mention a "Fatty Liver"
> prior to me being diagnosed i had a
> couple of spells in Hospital and whenever i had Blood taken the LFT
> test always came back
> suffering with a fatty Liver on the footer of the sheet.

From what I understand, what you may have seen is a reference to a possible
fatty liver condition, which is not uncommon in the population at large in
our age groups at about 40%, or of course fatty liver that may have been
elevated with the action of your Hep C condition which is shown in 70% of
that infected or previously infected population. I know of no way a
diagnosis of Fatty Liver can be diagnosed from a blood test. Although I
suppose it could have something to do with your levels of Triglycerides and
or the lipids in your bloodstream. (just guessing, GED)

> When i asked a
> Staff Nurse then a junior
[quoted text clipped - 6 lines]
> Dihoreah for three days,and the upshot of this was i passed the
> substances [fat] natural.

That's remarkable. I have to consider that somehow. Were you under
treatment for Hep C when this happened, by any chance?

> Also since i have been dry,i have felt a
> definate benefit in all round health.There is not one thing i could
> single out and give credit to.Although for quite a while ago i started
> taking Milk Thistle capsules,and i can safely say that at first they
> really did help me and my complaint [at the time i was,from time to
> time suffering from a hot itchy Liver].

I may have been experiencing what you call an itchy liver. In the right
side just above my stomach. I thought it was perhaps gallstones that may
have been quietened by the bile increase because of the milk thistle. There
sure are lots of questions here.

> The Milk Thistle dealt with this
> complaint [or seemed to] and
[quoted text clipped - 7 lines]
> normally like that
> in fact i'm always the opposite,and i can't sleep enough.

You know, to me this sounds like the bouts of fatigue that come and go with
the effects of the Hep C virus. They come and go with me as well, but I
have been taking (only about) three capsules of 80% silymarin MThistle at
odd-ball hours, basically just a soft-drink top with some in it at the
table, like a chocolate raisin snack or something. :) I am not sure of the
stated concentration of Silymarin in each of the 150 mil caps. I should go
to the manufacturer's website to see how they ascertain the veracity of the
concentration of the product, I suppose. www.holistahealth.com (no, I do
not work or am associated with them in anyway except they are probably the
cheapest available at the pharmacy where I shop)

> Anyway i
> tracked this feeling down to the Milk Thistle,i asked the factory [one
[quoted text clipped - 7 lines]
> did it was only for a few seconds,so i haven't taken anything but
> prescribed medicine since.

..
whoa, I that sounds like a warning sign of one kind or another. I thought
that Milk thistle was passed through the elimination system just like any
other food, if the nutrients could not be absorbed in 6 to 8 hours.

> Like i said at first it was brilliant with that itch gone i was very
> very pleased,so Cactus the
> same just might help you friend just be very carefull dosewise.

thanks for the alert, GED. I am committed to living with my condition until
such time that a more user friendly dragon slaying method comes round. I
don't know about National Health or whatever third party coverage you may
have, but the national health type medical pharmaceuticals coverage does not
allow for a second treatment of the combination therapy as I relapsed after
completion and the effectiveness of subsequent same-regimen treatment is
about 20% or less.

Best wishes

cactus jammies --------------------------------

Reply to this Message

spartak - 15 Dec 2006 12:33 GMT

>> Ged , you got some bad info . Geno 1 can be cleared the same as 2,3,4,
>> . Sometimes people clear during tx ,treatment or while actively taking
[quoted text clipped - 84 lines]
>immune system booster.Thanks for the texts they have helped me a great
>deal CHEERS *GED*

HI GED, you said earlier you had hep c twenty something years without even
knowing, so i was just wondering how often you drank alcohol before you
finally found out you had hep c? the reason im asking is because i found out
that i had contracted hep c when i went for a blood test, this was 5 years
ago and i must of contracted the virus just before i had the blood test done
so ive had it roughly 5-6 years, im now 29 years old, ive always been a
pretty shy person and i always enjoyed a drink (alcoholic) maybe once a week
just to socialize and it always gave me a confidence i never normally had, i
know your not really meant to drink when you have hep c and i havent for the
past 3 and a half years or so, but this has had a major effect on my social
life, because of my shyness and low confidence i always needed a drink just
to socialize, now ive become a near recluse through not being able to have a
drink once in a while, i never go out anywhere all i do is sit about all day
feeling really depressed and sometimes suicidal, i just want my weekly drink
again (and not worry my liver is going to pack up) but i often think id
rather die young and at least enjoy myself than live like a recluse with
depression, just so my liver can be ok.

Reply to this Message

Waterspider - 28 Dec 2006 03:37 GMT

<snip> ive always been a

> pretty shy person and i always enjoyed a drink (alcoholic) maybe once a
> week
[quoted text clipped - 15 lines]
> rather die young and at least enjoy myself than live like a recluse with
> depression, just so my liver can be ok.

See a professional about this, ASAP.

It sounds like your problem is more serious than social shyness, especially
if you're feeling suicidal, and even more especially if you think you're
feeling suicidal because you're not drinking. You might want to consider
trying anti-depressants, a much better solution than killing yourself
immediately because you're not drinking, or dying of liver disease because
you are.

Waterspider

Reply to this Message

*GED* - 28 Dec 2006 12:48 GMT

> >> Ged , you got some bad info . Geno 1 can be cleared the same as 2,3,4,
> >> . Sometimes people clear during tx ,treatment or while actively taking
[quoted text clipped - 105 lines]
> --
> Message posted via http://www.medkb.com

"spatak via MedKB.com"
I have been told that i contacted the Virus around 1983/84.During this
time i was a very heavy drinker,in fact right up to the day in 2001
when the loss of blood from internal problems forced me to face up to
the facts.I was a one of those people who thought it was
impossible to have a good time without getting pissed.I simply couldnot
or wouldnot admit
that my particular way of getting kicks was stupid and given what was
wrong with me dangerous.After i lost all that blood i knew pretty much
the drinking game was up,and i must admit sometimes in my darker weaker
moments i didn't think i could stay sober without Medical help.I had
looked at some people [unwilling] Teetotalers and what a miserable
bunch they sometimes seemed to be.After the passage of about two weeks
when the shaking and craving stopped i can safely say it didnot trouble
me again.I admit there have been times when i have thought to myself
man i could use a stiff drink now,luckilly these times are few and far
between.Also i remember only to well the pain and anguish that
drinking brought me,for instance not eating anything except Pot Noodles
for days at a time.
So as the food wouldn't get in the way of the Alchohol,the Pain from my
Stomach and the
intestines around my Liver were acutely painfull.I don't miss that
nightmare,and the thought
that finally i have overstepped the mark and damaged my self beyond
help,that my friend is
a very bad and depressing feeling to live with.
Anyway enough about me,you seem to have painted yourself into pretty
much the same corner i did,as regards Socialiseing and Drinking.The
fact is you can go into a Pub with some friends and enjoy yourself
without getting plastered,there are pop quizes and a lift there and
back must be very welcome.What i did as well was i changed my
friends,this was
no easy task also i started to attend College and a self help group
which i still go to.Sometimes just a few words to tell somebody you are
Pissed off and wish you were f.cking dead.is all you need to start over
again.I know it works for me,for years i suffered in
total silence i slipped further and further down the depressed list.I
remember one New Years
Eve 2003 it was i went to bed at eight thirty in the evening as sick as
ever i can remember.
However i lived through it and i drew strength,if i could take that and
not drink then i could go
out again and trust myself not to.There was a time when i would shake
just going into a off
licence for some fags or a newspaper.Believe me you "WILL" find your
way you are going through that stage of letting go of the past,look to
the future not behind you.That is what i
have found out,my life would be full of regrets if i let the darkness
win bollocks to that you only get one go at it make the most before
it's too late.Good luck mate i hope it works out
find something you enjoy doing and do it.

Reply to this Message

Nostromo - 16 Dec 2006 05:27 GMT

> I have hep-c and i have had it for twenty three or so years.I found out
> about this stinking Virus six years ago when my veins in my stomach

etc.

Pharmaceutics only are making tons of money selling an uneffective
treatment (as interferon+ribavirin is, at least with some genotypes)
abusing of the meaning of words like "healing" of "clearing". In fact,
for the patient it means to be well again, to them it means having HCV
under a certain level. When your doctor said that you cleared the
virus, he used you ad an unconscious advertising machine for this dirty
business, because your experience could drive some other patient in the
business.Perhaps he was unconscious as well. But in this case
unconsciousness is really near to unhonesty, by my point of view.

This situation is likely to continue, unless something casual bring us
the true cure. This way they are keeping their unhealthy people, as us,
and making their life with.

F.

Reply to this Message

Waterspider - 28 Dec 2006 03:39 GMT

>> I have hep-c and i have had it for twenty three or so years.I found out
>> about this stinking Virus six years ago when my veins in my stomach
[quoted text clipped - 13 lines]
> the true cure. This way they are keeping their unhealthy people, as us,
> and making their life with.

IDIOT!

Current pharmaceutical treatment for hep c works in 60%-80% of cases.
Genotype is a factor, yes, but genotype 1 is quite curable in many people.
Paranoia will destroya.

Reply to this Message

Nostromo - 28 Dec 2006 08:15 GMT

> Current pharmaceutical treatment for hep c works in 60%-80% of cases.

What you mean with "works"? Where you get your data? Who wrote these
statistics?

> Genotype is a factor, yes, but genotype 1 is quite curable in many people.

Well, I have genotype 1B.

Doctors use to say, as you, that the I+R treatment is successfull
without specifying the genotype issue.

When I make specific questions about it, they get upset, then they
admit that success in my case is expectable in 30% of the cases, then
if I ask w"What you mean with success" they admit that there is no
successfull treatment until now, but with the progress of the medecine
we are going to have it in five years (probably the time slot for
research financing), last they start speaking about trying on me
unsuccessful treatments, as interferon+ribavirin+amantadine or some
other sh.t to test. They don't know a bunch about why they have to test
amantadine on me. They do so only because others are said to do so and
they find it written down on research relations. The same for the 5
years time slot. I am sick from 20.

Who publishes research relations? The "pharmaceutic informator", a
translation of the italian euphemism for salesman.

> Paranoia will destroya.

Bah, U can continue believing in Mickey Mouse. With friendship,

N.

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*GED* - 28 Dec 2006 12:55 GMT

> > I have hep-c and i have had it for twenty three or so years.I found out
> > about this stinking Virus six years ago when my veins in my stomach
[quoted text clipped - 15 lines]
>
> F.

"Nostromo"
What you mentioned about Meds etc is just what i have came around to
thinking lately.The
casual cure or the unforseen cure is the best i hold out hope for
now,still things might change for us!!!!!.I did one awful lot of damage
to my Liver before i was aware i had Hep-c so
i don't know how it will keep working,mind you after the abuse i gave
it the thing should have
packed in years ago so Heres Hoping !!!!!!.

Reply to this Message

Nostromo - 31 Dec 2006 15:14 GMT

*GED* ha scritto:

> I did one awful lot of damage
> to my Liver before i was aware i had Hep-c so
> i don't know how it will keep working,mind you after the abuse i gave
> it the thing should have

GED, do not drink a drop of alchool any more, and have a lot of
wondeful years.

N.

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