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darmadogg - 27 Jan 2005 22:58 GMT

Greetings Dragonriders, I was Dx'd this past Oct. and am just starting
to come to grips with this. Apparently I've had "it" for thirty years
and the damage done so far is Stage 4 cirrhosis, splenomegaly with
platelet counts under 40,000 so a biopsy was out of the question. I
just got my EGD back and the varicies are at stage 4 but not
bleeding... Whew. And not a single frigging symptom. I'm sure this is
not unique but it would have been nice to have had a clue.

I opted for the drug route and just did my first Pegasys shot of 24 on
Monday along with 400mg of ribavirin BID. My genotype is 3A which my
doc says is pretty responsive to Tx. Somebody tell me it doesn't get
worse as you go along... meaning the nausea and low grade "there's a
cold coming on" feeling. (Call me a crybaby, I know it could be alot
worse.)

Oh yeah, I'm almost ashamed to admit I'm also a registered nurse and
I've done clinical rotations on Gastro floors so I've seen what this
does to people and if I said I wasn't scared shitless I'd be lying.

Anyways, this may be of interest to some who aren't having any luck
with the drug routine, and it may be old news, but ultaviolet blood
irradiation or UBI may be an alternative. A book by Dr. Wm. Douglas
called "Into the Light" sounds promising. I'm already looking for
other modalities just in case I can't hack this Tx.

So, sorry this is so long in the mouth but I'll try to be brief from
now on.

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Thomas Wagner - 27 Jan 2005 23:57 GMT

>Anyways, this may be of interest to some who aren't having any luck
>with the drug routine, and it may be old news, but ultaviolet blood
>irradiation or UBI may be an alternative. A book by Dr. Wm. Douglas
>called "Into the Light" sounds promising. I'm already looking for
>other modalities just in case I can't hack this Tx.

It's interesting, but I would not bet my (or your) life on it. There
apparently are some trials in Europe, but so far nothing earth-shaking
has been reported. Don't trust a book by some promoter. Better try to
stick to the proven treatment, come hell or high water... which may or
may not. My sides were relatively mild, and I was able to work through
treatment, but I did need both Procrit and Neupogen to keep my red&white
cell levels in acceptable ranges and had to stop tx early (still
cleared, though).

Thomas

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Gordo Mondragon - 28 Jan 2005 00:38 GMT

Yo Dogg -

> I opted for the drug route and just did my first Pegasys shot of 24 on
> Monday along with 400mg of ribavirin BID. My genotype is 3A which my
> doc says is pretty responsive to Tx. Somebody tell me it doesn't get
> worse as you go along... meaning the nausea and low grade "there's a
> cold coming on" feeling. (Call me a crybaby, I know it could be alot
> worse.)

My first month was awful, but I think a lot of that was because I was so
upset and struggling against it. For me, this stuff was like a physical
megaphone to any bad or depressing thoughts I had and when I was upset
or stressed, I became physically ill. That said, I can't kick myself
for not being able to control those thoughts because a lot of it came
from the meds. The best thing I was able to do was to distract myself
with doing things that were easy - I even spent a week in Vegas and the
weeks before that I didn't even get out of bed much.

So my experience was that the first month was the worst of my 24 weeks,
but I know from people's experience here that the first and second shots
can be highly variable not not predictive.

Also, I didn't get any bad physical sides - low red cells and low white
cells but nothing dangerous.

> Oh yeah, I'm almost ashamed to admit I'm also a registered nurse and
> I've done clinical rotations on Gastro floors so I've seen what this
> does to people and if I said I wasn't scared shitless I'd be lying.

Rationally, though, if everyone ended up in the hospital then they
couldn't use it. In the same vein, you will hear more bad stories here
than you would hear with a full sampling 'cause people come here for
support when they feel bad.

Certainly a mild reaction to the first shot is a hopeful thing.

G

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Paul - 28 Jan 2005 01:55 GMT

On 27 Jan 2005 14:58:26 -0800, "darmadogg" <darmadogg@yahoo.com>, in
message ID <1106866706.787240.284260@z14g2000cwz.googlegroups.com>, in
the newsgroup alt.support.hepatitis-c wrote:

>Apparently I've had "it" for thirty years
>and the damage done so far is Stage 4 cirrhosis, splenomegaly with
[quoted text clipped - 6 lines]
>Monday along with 400mg of ribavirin BID. My genotype is 3A which my
>doc says is pretty responsive to Tx.

Best of luck with the tx. I only hope that those platelets hold up.
Have they started you on the full dose of interferon or a slightly
reduced one to start with? Are they going to monitor your blood more
frequently than is usual due to the platelet count? At least you have
a favourable genotype.

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Kozure Ookami - 28 Jan 2005 08:39 GMT

>Greetings Dragonriders, I was Dx'd this past Oct. and am just starting
>to come to grips with this. Apparently I've had "it" for thirty years
[quoted text clipped - 23 lines]
>So, sorry this is so long in the mouth but I'll try to be brief from
>now on.

Dogg, I only had the flu-like symptoms with my first shot and hear
that it often gets better after the first month or two. I hope that
holds for you and wish you luck in clearing the virus. Those are
some scary numbers. I hope your doctor watches your CBCs extra
closely and takes action as necessary. Stay positive. It is
fortunate that you at least got one of the easier to clear genotypes.

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