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Home > Archive > Hepatitis disease > June 2006 > what to do where to look what to try
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what to do where to look what to try
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| I am post liver transplant of 4 1/2 years. I have been taking
prednison, prograf (tacrolimis) and cellcept plus painkillers and some
herbal, esp. milkweed.
I usually am lethargic, neuropathies esp in my feet and pains at the
scars of surgery and headaches. I have ok days and worse ones.
My thought was to get surgery to remove the last few decaying teeth and
reduce my rate of infections. I thought if I was healthy enough I could
try reduction in immune suppressants and then try interferon/antivirals
or what is best now.
The surgery broke a hole (fistula) in the bone between my mouth and my
infected sinuses. To fix this I was taken off prednisone within two
weeks in early February. This was very painful and feels like it is
still affecting me. I had surgery to fix the sinus infection which may
have helped, and in month, I am supposed to get surgery to fix the
fistula.
Last week, I went sort of nuts or something and was mostly asleep but
when forced to answer questions, I could not spell my name, my wife
seemed to me to be my girl friend and I was weepy and emothional. I
spent a few days in the hospital and they learned that I did not have
what they could test for. I personally have almost no memory of this
but do spend most of my time in bed, but remain productive as a genetic
researcher on microRNAs and biocomputing which I can do lying down and
is distracting from my pain.
My question is what to do. I was planning on taking
interferon/ribovarin which was told to me that I would have 85%
recovery rate because my genotype is II (a or b, can't remember).
Any ideas would be very welcome. My wife is scared and does not want me
to die. Some days it does not seem so bad to not suffer.
thanks,
bob
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bob wrote:
> I am post liver transplant of 4 1/2 years. I have been taking
> prednison, prograf (tacrolimis) and cellcept plus painkillers and some
> herbal, esp. milkweed.
>
> I usually am lethargic, neuropathies esp in my feet and pains at the
> scars of surgery and headaches. I have ok days and worse ones.
>
> My thought was to get surgery to remove the last few decaying teeth and
> reduce my rate of infections. I thought if I was healthy enough I could
> try reduction in immune suppressants and then try interferon/antivirals
> or what is best now.
>
> The surgery broke a hole (fistula) in the bone between my mouth and my
> infected sinuses. To fix this I was taken off prednisone within two
> weeks in early February. This was very painful and feels like it is
> still affecting me. I had surgery to fix the sinus infection which may
> have helped, and in month, I am supposed to get surgery to fix the
> fistula.
>
> Last week, I went sort of nuts or something and was mostly asleep but
> when forced to answer questions, I could not spell my name, my wife
> seemed to me to be my girl friend and I was weepy and emothional. I
> spent a few days in the hospital and they learned that I did not have
> what they could test for. I personally have almost no memory of this
> but do spend most of my time in bed, but remain productive as a genetic
> researcher on microRNAs and biocomputing which I can do lying down and
> is distracting from my pain.
>
>
> My question is what to do. I was planning on taking
> interferon/ribovarin which was told to me that I would have 85%
> recovery rate because my genotype is II (a or b, can't remember).
>
> Any ideas would be very welcome. My wife is scared and does not want me
> to die. Some days it does not seem so bad to not suffer.
>
> thanks,
>
>
> bob
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| Bob, i was in viral research and have a friend who is a p.a and has had
a transplant and im sure between he and i we can give you some help
..I had a near impossible hcv case to cure but with my lab background i
was able to get it the 1st time even though it took me about 8 months
to get a viral neg and did another 10 months 18 total to finish the hcv
off and have now been neg for three years. It was a pretty simple task
for those with an open mind and the med education helps alot too .So
give me an e mail and we will all get togther and get you some help .My
p.a friend is very good with the transplant things since he has had one
for 10 years and i am very good with the viral end. You can get me at
1122snyder@verizon.net or on the forum here but what we are going to
talk about are over most peoples heads so its your choice to do it here
on the forum or through general e mail . This can be a very trickey
virus to deal with and the odds and genotypes can be very decptive .
Sincerly ,Eric
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