Re: happy holidays everyone

[Guest guest]

Hi, free spirit! Welcome to the best forum available for HCV. I'll

take a cautious guess as to your best options, and others who are

more knowledgeable will follow shortly. First, exactly what drug

study are you involved in. Are you possibly on a placebo? I have

treated 3 times, as others have. I am now a transplant recipient and

doing quite well. If your Doctor will not discuss details with you,

you may want to look further. However, you must ask him detailed

questions. I always bring a list of questions. Can you bring a good

friend, lover or relative with you to the next visit. Sometimes,

another person can think a bit more rationally in the Doc's office,

as it's always rather nerve wracking to the patient. Yes, we all get

anxious and nervous! I know many others have suffered rashes, and

they'll have some solutions to try. I've never heard of the hearing

problems, but there are many side effects out there. You will get the

best advice here, so try to relax. We're all in the same

damned " Dragon " boat.

>

> I started treatment and stopped after 2 months. My hearing

suffered

> and broke out on such a bad rash, I could hardly sleep. My doctor

said

> that because I was also taking a study drug, I would never be able

to

> take that study drug again, because the company would no longer

sponsor

> me. He was not concerned about the hearing loss, he was just

concerned

> with the fact that I interrupted treatment.

>

> Now they want me to return weekly and give allow them to continue

> taking blood. I am so lost and confused. I started taking herbal

> supplements, and after 1 month, starting to feel a little better.

>

> I would like to try the tratment again someday, but I am afraid

that if

> I do not cooperate with the weekly study, my Dr will not approve

the

> treatment. Maybe I need a new doctor. He was not very helpful and

did

> not share information.

>

> Has anyone else out there tried more than once?

>

[Guest guest]

I have tried 5 times . Once with just interferon , then twice with peg/riba combo , and twice with infergen/riba combo . You don't have to continue giving to the study , but remember all the data they get will help them to refine the treatment protocols . And when the study time is over the results get published , and I always end up with copies to post here lol If you decide not to continue giving blood samples your doctor should still try you on another treatment type .

happy holidays everyone

I started treatment and stopped after 2 months. My hearing suffered and broke out on such a bad rash, I could hardly sleep. My doctor said that because I was also taking a study drug, I would never be able to take that study drug again, because the company would no longer sponsor me. He was not concerned about the hearing loss, he was just concerned with the fact that I interrupted treatment.Now they want me to return weekly and give allow them to continue taking blood. I am so lost and confused. I started taking herbal supplements, and after 1 month, starting to feel a little better. I would like to try the tratment again someday, but I am afraid that if I do not cooperate with the weekly study, my Dr will not approve the treatment. Maybe I need a new doctor. He was not very helpful and did not share information.Has anyone else out there tried more than once?

[Guest guest]

my problem is that I am in denial.

I was diagnosed about 10 years ago. Tried to put it out of my mind,

ignore it, then when my liver levels started to escalate, I was

advised to have a biopsy - I now have cirrhosis.

So, being 51, they said I was relatively young and would most likely

have a 40% chance of treating.

After the first couple of treatments, I suffered greatly, ended up in

emerg room with acute coronary problems. The medicine was causing

heart palpitations, along with alot of other things.

So, I stopped.

Maybe I am just in denial, I have resumed my normal routine, have my

head in the sand, and Im afraid to come out again.

I live alone, no moral support, no groups, no one close.

I clean my house and go to work.

I am not in pain, trying to enjoy each day,

afraid to treat.

> >

> > I started treatment and stopped after 2 months. My hearing

> suffered

> > and broke out on such a bad rash, I could hardly sleep. My

doctor

> said

> > that because I was also taking a study drug, I would never be

able

> to

> > take that study drug again, because the company would no longer

> sponsor

> > me. He was not concerned about the hearing loss, he was just

> concerned

> > with the fact that I interrupted treatment.

> >

> > Now they want me to return weekly and give allow them to continue

> > taking blood. I am so lost and confused. I started taking

herbal

> > supplements, and after 1 month, starting to feel a little better.

> >

> > I would like to try the tratment again someday, but I am afraid

> that if

> > I do not cooperate with the weekly study, my Dr will not approve

> the

> > treatment. Maybe I need a new doctor. He was not very helpful

and

> did

> > not share information.

> >

> > Has anyone else out there tried more than once?

> >

>

[Guest guest]

I think you realize the truth, which would mean you are not truly in

denial. You know you have Hep C, and you seem to know that cirrhosis

is for real. You also know that the side effects of the disease and

the treatment can really suck. Now, with your head out of the sand,

it's time for you to take your time, but make some tough decisions.

Others have already posted that you should get a new Doc. That's

great advice, take it! Tell us where you live, and perhaps someone

can recommend a great Doctor. This is the most important decision you

have to make. A good Doc makes a world of difference, and there are a

lot of idiots out there, so beware. You really need a Doc who is

recognized and has patients as fans. We also don't know exactly what

treatment you were on. Good sleep, diet and lots of water are very

important during treatment and always. A positive attitude is also

important. Mind over matter counts here, for sure. Being a young 51,

you have lots of great times ahead. Remember, most people die with

this disease, not because of it. Keep asking questions, and please

tell us where you live. Someone may recommend your next Doctor!

>

> my problem is that I am in denial.

> I was diagnosed about 10 years ago. Tried to put it out of my

mind,

> ignore it, then when my liver levels started to escalate, I was

> advised to have a biopsy - I now have cirrhosis.

>

> So, being 51, they said I was relatively young and would most

likely

> have a 40% chance of treating.

>

> After the first couple of treatments, I suffered greatly, ended up

in

> emerg room with acute coronary problems. The medicine was causing

> heart palpitations, along with alot of other things.

>

> So, I stopped.

>

> Maybe I am just in denial, I have resumed my normal routine, have

my

> head in the sand, and Im afraid to come out again.

> I live alone, no moral support, no groups, no one close.

>

> I clean my house and go to work.

> I am not in pain, trying to enjoy each day,

> afraid to treat.

[Guest guest]

Hi, welcome to a great group that all of us wish we didn't have to be

members of. I'm 54, have probably had Hep C for almost 34 yrs. I

haven't treated and likely never will and it's a decision each of us

have to make and what is right for one is not neccesarily right for

another but you will find many knowledgable people here who have and

are currently doing treatment. How high were your liver numbers? Are

you still in relatively good health? It must be very hard having to

go this alone but as I said you've found a great " family " in this

group. Best of wishes to you...Debbie2

>

> my problem is that I am in denial.

> I was diagnosed about 10 years ago. Tried to put it out of my

mind,

> ignore it, then when my liver levels started to escalate, I was

> advised to have a biopsy - I now have cirrhosis.

>

> So, being 51, they said I was relatively young and would most

likely

> have a 40% chance of treating.

>

>

>

>

> >

>

[Guest guest]

Rick

thank you for such wise words!!! Speaking from one who has recently gone through all you have... thank you again and did I tell you how nice it is to have you back and see you posting again!!!

hugs

jax

Subject: Re: happy holidays everyoneTo: Hepatitis_C_Central Date: Sunday, December 7, 2008, 8:19 PM

I think you realize the truth, which would mean you are not truly in denial. You know you have Hep C, and you seem to know that cirrhosis is for real. You also know that the side effects of the disease and the treatment can really suck. Now, with your head out of the sand, it's time for you to take your time, but make some tough decisions. Others have already posted that you should get a new Doc. That's great advice, take it! Tell us where you live, and perhaps someone can recommend a great Doctor. This is the most important decision you have to make. A good Doc makes a world of difference, and there are a lot of idiots out there, so beware. You really need a Doc who is recognized and has patients as fans. We also don't know exactly what treatment you were on. Good sleep, diet and lots of water are very important during treatment and always. A positive attitude is also important. Mind over matter

counts here, for sure. Being a young 51, you have lots of great times ahead. Remember, most people die with this disease, not because of it. Keep asking questions, and please tell us where you live. Someone may recommend your next Doctor!>> my problem is that I am in denial.> I was diagnosed about 10 years ago. Tried to put it out of my mind, > ignore it, then when my liver levels started to escalate, I was > advised to have a biopsy - I now have cirrhosis.> > So, being 51, they said I was relatively young and would most likely > have a 40% chance of treating.> > After the first couple of treatments, I suffered greatly, ended up in > emerg room with acute coronary

problems. The medicine was causing > heart palpitations, along with alot of other things.> > So, I stopped.> > Maybe I am just in denial, I have resumed my normal routine, have my > head in the sand, and Im afraid to come out again.> I live alone, no moral support, no groups, no one close.> > I clean my house and go to work.> I am not in pain, trying to enjoy each day,> afraid to treat.

[Guest guest]

Yes you can still do treatment but it looks like you need to find a new doc, one who knows a lot about this virus.. Its very probable that you reacted to the experimental drug and hopefully not the peg and riba. Why didnt your doc treat your side effects? He "SHOULD" have given you something for the rash as that can make one truely miserable.. its too bad that you only were able to treat for 2 months..

I can tell you that treatment is difficult but it IS DOABLE.. and we'll be here with you if you decide to treat again..

There are some who are not treating with allopathic meds but are using some alternative stuff that is helping them to feel better.. However, if you have cirrhosis, while you can survive for many years with cirrhosis, your next step should you not treat and stop this virus would be liver transplant. If you had cirrhosis simply from alcohol abuse stopping the alcohol would stop the cirrhosis from getting worse but since your's is caused by the virus, you need to stop the virus.. I really hope you can find a doc who can help you treat and is willing to help you treat your side effects.. If you could tell us where you live, we 'might' be able to help you find a new doc..

keep us posted hon

jax

Subject: Re: happy holidays everyoneTo: Hepatitis_C_Central Date: Sunday, December 7, 2008, 7:32 PM

my problem is that I am in denial.I was diagnosed about 10 years ago. Tried to put it out of my mind, ignore it, then when my liver levels started to escalate, I was advised to have a biopsy - I now have cirrhosis.So, being 51, they said I was relatively young and would most likely have a 40% chance of treating.After the first couple of treatments, I suffered greatly, ended up in emerg room with acute coronary problems. The medicine was causing heart palpitations, along with alot of other things.So, I stopped.Maybe I am just in denial, I have resumed my normal routine, have my head in the sand, and Im afraid to come out again.I live alone, no moral support, no groups, no one close.I clean my house and go to work.I am not in pain, trying to enjoy each day,afraid to treat.> >> > I started treatment and stopped after 2 months. My hearing > suffered > > and broke out on such a bad rash, I could hardly sleep. My doctor > said > > that because I was also taking a study drug, I would never be able > to > > take that study drug again, because the company would no longer > sponsor > > me. He was not concerned about the

hearing loss, he was just > concerned > > with the fact that I interrupted treatment.> > > > Now they want me to return weekly and give allow them to continue > > taking blood. I am so lost and confused. I started taking herbal > > supplements, and after 1 month, starting to feel a little better. > > > > I would like to try the tratment again someday, but I am afraid > that if > > I do not cooperate with the weekly study, my Dr will not approve > the > > treatment. Maybe I need a new doctor. He was not very helpful and > did > > not share information.> > > > Has anyone else out there tried more than once?> >>

[Guest guest]

Thanks, Jackie! Pretty nice to be here, too! What a battle for all of

us. Oh, well, I always look forward to the good days, and take the bad

ones in stride. Life is always good, precious and worthwhile to fight

for.

>

> Rick

> thank you for such wise words!!!  Speaking from one who has recently

gone through all you have... thank you again and did I tell you how

nice it is to have you back and see you posting again!!!

> hugs

> jax

[Guest guest]

you got it Rick,, life is always worth it!

Subject: Re: happy holidays everyoneTo: Hepatitis_C_Central Date: Sunday, December 7, 2008, 9:58 PM

Thanks, Jackie! Pretty nice to be here, too! What a battle for all of us. Oh, well, I always look forward to the good days, and take the bad ones in stride. Life is always good, precious and worthwhile to fight for.>> Rick> thank you for such wise words!!! Speaking from one who has recently gone through all you have... thank you again and did I tell you how nice it is to have you back and see you posting again!!!> hugs > jax

[Guest guest]

Hi Free Spirit,

I do not know what you mean by denial. You know you have Hep C and you have attempted treatment. They want you back in to complete the study on the drug.

There is another way to go, but it may not be what you can afford. Dr Berkson---look him up on the internet does a medical treatment that has worked for many. Your insurance may pay for the doctor visit and labs, but you will have to pay for the treatment---and travel costs, etc. You can take the supplements he advises, but once your liver is bad condition, you probably would want/need IV treatment as well. Of course, the first and best thing for your liver is NOT DRINKING. When I was diagnosed, no one told me not to drink. I had stopped drinking years ago when I was told I had some sort of liver problem--Hep C was not known then. I do take the supplements Berkson recommends--alpha lipoic acid, selenium and milk thistle--in the dosage he recommends. You must also take B vitamins with it. I plan to do the IV treatment in Jan, but my liver is not in bad condition and I plan to keep it that

way. I have had the disease for 43+ years. I live alone too. You may email me direct and I will send the info I have. Good luck.

SuziQ

Subject: Re: happy holidays everyoneTo: Hepatitis_C_Central Date: Sunday, December 7, 2008, 9:32 PM

my problem is that I am in denial.I was diagnosed about 10 years ago. Tried to put it out of my mind, ignore it, then when my liver levels started to escalate, I was advised to have a biopsy - I now have cirrhosis.So, being 51, they said I was relatively young and would most likely have a 40% chance of treating.After the first couple of treatments, I suffered greatly, ended up in emerg room with acute coronary problems. The medicine was causing heart palpitations, along with alot of other things.So, I stopped.Maybe I am just in denial, I have resumed my normal routine, have my head in the sand, and Im afraid to come out again.I live alone, no moral support, no groups, no one close.I clean my house and go to work.I am not in pain, trying to enjoy each day,afraid to treat.> >> > I started treatment and stopped after 2 months. My hearing > suffered > > and broke out on such a bad rash, I could hardly sleep. My doctor > said > > that because I was also taking a study drug, I would never be able > to > > take that study drug again, because the company would no longer > sponsor > > me. He was not concerned about the

hearing loss, he was just > concerned > > with the fact that I interrupted treatment.> > > > Now they want me to return weekly and give allow them to continue > > taking blood. I am so lost and confused. I started taking herbal > > supplements, and after 1 month, starting to feel a little better. > > > > I would like to try the tratment again someday, but I am afraid > that if > > I do not cooperate with the weekly study, my Dr will not approve > the > > treatment. Maybe I need a new doctor. He was not very helpful and > did > > not share information.> > > > Has anyone else out there tried more than once?> >>

[Guest guest]

By the way, I forgot to mention that this treatment does NOT have side effects and is given for one or two weeks. But if you are interested, I will send everything in the info and you can read it about yourself. That is what I did---I read everything I could find on it ---and there is a lot. You can see lectures he gives at medical meetings, read patient comments, look at research done on it etc.

Cheers, SuziQ.

From: freespirit826 <freespirit826@ yahoo.com>Subject: [Hepatitis_C_ Central] Re: happy holidays everyoneTo: Hepatitis_C_ Central@yahoogro ups.comDate: Sunday, December 7, 2008, 9:32 PM

my problem is that I am in denial.I was diagnosed about 10 years ago. Tried to put it out of my mind, ignore it, then when my liver levels started to escalate, I was advised to have a biopsy - I now have cirrhosis.So, being 51, they said I was relatively young and would most likely have a 40% chance of treating.After the first couple of treatments, I suffered greatly, ended up in emerg room with acute coronary problems. The medicine was causing heart palpitations, along with alot of other things.So, I stopped.Maybe I am just in denial, I have resumed my normal routine, have my head in the sand, and Im afraid to come out again.I live alone, no moral support, no groups, no one close.I clean my house and go to work.I am not in pain, trying to enjoy each day,afraid to treat.> >> > I started treatment and stopped after 2 months. My hearing > suffered > > and broke out on such a bad rash, I could hardly sleep. My doctor > said > > that because I was also taking a study drug, I would never be able > to > > take that study drug again, because the company would no longer > sponsor > > me. He was not concerned about the

hearing loss, he was just > concerned > > with the fact that I interrupted treatment.> > > > Now they want me to return weekly and give allow them to continue > > taking blood. I am so lost and confused. I started taking herbal > > supplements, and after 1 month, starting to feel a little better. > > > > I would like to try the tratment again someday, but I am afraid > that if > > I do not cooperate with the weekly study, my Dr will not approve > the > > treatment. Maybe I need a new doctor. He was not very helpful and > did > > not share information.> > > > Has anyone else out there tried more than once?> >>