RE: First TX shot--Thought I was going to die (figuratively)

November 1, 2005

,

I'm glad your dentist and neighbor are good about this. My current dentist

is. Many are. But many are not. And I'd say that its only about 1/4 of the

dentists I've been to in the past 10 years since diagnosis of HCV that are

following very good practices. They seem to protect themselves pretty well,

but the cross contamination issues are the most prevalent. I was non-a non-b

for at least 10 years before that (as long as they had that diagnosis) and I

can tell you that I didn't visit any dentists that consistently used gloves.

Of course at that time I didn't realize that I was infectious. We just

didn't know what this stuff was.

Yes, barber shops, where razors are commonly used on clients, and the most

common disinfectant is alcohol based, which we know is NOT effective against

HCV.

Kudos to your dentist, and mine, for their efforts and good practices. I

hope we can get them all to understand that HCV is much easier to transmit

and catch than HIV. That the conditions that render the HIV beasties

impotent don't do the same for the HCV beasties.

Thanks for stepping in and thanks for making sure your dentist and neighbor

are aware.

Sal

Re: First TX shot--Thought I was

going to die

> (figuratively)

>

> you know, I would be more interested in telling people

> the current risks of catching HCV. Some of those you

> mention are still current. In telling people to get

> tested, it would be helpful to mention those past

> risks. Yes,they are still here, but most businesses

> and medical practices are up to date. Speculating

> about how we got this disease is the least important

> part. Getting people tested is.

>

> It's a pleasure having you join in our conversations. We hope you

have found

> the support you need with us.

>

> If you are using email for your posts, for easy access to our

group, just

> click the link-- Hepatitis C/

>

> Happy Posting

>

November 1, 2005

hiey ty fro the reply- i dont know what I will be doing- found a new Dr for another opinion- I feel like the old Dr (when the viruse reappeared) kicked me to the curb. And yes, mine cme back at 5 ooooooo which was high. frustrating huh?

br54930701 <wreeves126@...> wrote:

--hi, Same thing happened to me. 48 weeks with pegasys/ribavirin. No virus at 3 months, 212,000 at 6 months then at the end no virus. But 6 months later 15,000,000; off the scale I guess. I'm type 1-A and get another biopsy Wednesday, first in over three years. Got my fingers crossed.- In Hepatitis C , perky rose <agann_01@y...> wrote:>> Yes it is a hard time;;;and sleeping it off is the best way to deal with it. I went thru the entire 48 weeks of peg-interferon and ribavarin. The virus was undetectable at 12 weeks. A month after I finished,theapy, however, the virus relapsed (with a vengeance) - quite devastating. So now, I am sitting back, not even knowing what step to take next . Has anyone else relapsed? Do you get back into therapy? IT is quite

depressing.... But luck to those of you still in therapy - hope you are successful > > janet <doc_jade@y...> wrote:Oh Gav,> Sorry you had such a bad time the first shot. Let me give you a little secret. On the day of shot, I literally wear myself out. Do all those little things that I know that will make me sleepy. Then I take my shot, and sleep off the side effects. And honey it does get better as the treatment goes. I am Genotype 1a and yes I have to do the whole 48 weeks. I have 7 more shots come monday, then I will be done. As of now I am still undetectable. So there is a positive side of treatment. Reaching that undetectable!!!> Be sure and let us know how you are doing honey. And remember we are here for you.> Love> Janet> > Z King <gavriella_rachel@y...> wrote:> Well, I took my first Ribavirin and Pegintron 2b shot> Friday night. I have genotype 1a

with a 220,000 viral> load. Hopefully this stuff will wipe it out.> > I know the first weeks of treatment are the supposed> to be the worst, but I didn't expect to get what I> did. Within 4 hours after taking the shot: headache> kicked in, then nausea and SEVERE stomach pain, then I> spent the whole night vomiting and major diarrhea.> Haven't barely slept since Thursday night. Saturday> all day, I had a headache that felt like someone shot> my brains out; Tylenol isn't helping (and I know too> much Tylenol is bad for the liver). So I'm foregoing> that. Today, Sunday, it is a bit better. I'm able to> hold down some protein shake and a bit of cheese. I'm> drinking as much water as my body can hold to ease the> symptoms. Been drinking water around the clock since> Friday. Even keep bottles of the stuff by my bed.> > I'm still a bit headachey and dizzy today, but

I can> deal with it. All I can say is WHOA--Friday night was> the night from hell. Hope this gets easier. At least> my two dogs have been trying to give me comfort. They> seem to know when I don't feel good and will snuggle> with me in bed and bring me their toys.> > I had to cancel my date Saturday with a guy I've been> dating the past few months. When I told him why (the> fallout from the treatment) and about the HepC, he> freaked. I told him I didn't want to have this kind of> serious conversation over the phone. I wanted to tell> him in person. He's in total shock and is worried I> gave it to him. That I can understand when people> don't know much about the virus. He asked if I ever> planned on telling him; I told him definitely--he has> the right to know if the relationship gets serious.> And I wanted to make sure I had all my information,> doctor lined

up, and treatment plan in the works. He> said he would call me today, so I'm waiting for that.> > And I am prepared if he never calls again, too. It is> the chance I have to take. But I don't want him to> hang around out of pity or feels he's obligated. I> know there are some people who have had the virus for> years, got married, had kids, and no one ever> contacted it. I'm trying to remain positive about> that. He is a very special person to me, so I'll have> to wait and see.> > Sorry to be such a downer--it's been the ultimate> crummy weekend. I look forward going into work> tomorrow, so I can keep busy and take my mind off of> this...even if it is for a little bit.> > Gav> > > > > >

__________________________________ > - PC Magazine Editors' Choice 2005 > http://mail.> > > I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon> > > It's a pleasure having you join in our conversations. We hope you have found the support you need with us. > > If you are using email for your posts, for easy access to our group, just click the link-- Hepatitis C/> > Happy Posting > > > >

November 1, 2005

oh jacki - thats a sad one. Im sorry - your child didnt get hep C did he? YEs, they told me to wait 6 months before doing anything, then prob 5 years til they find a cure. Screw that- I dont have uch fibrosis so Im goin got just go for any treatment I can find. And, my name is Ann, somehow my game screen name appeared on that first e-mail. ha!

thanks AnnJackie on <redjaxjm@...> wrote:

well Willian and Rose,, Im so sorry,, I was/am geno 1a too and I spoke with Dr. Cecil and he advised becasue I was stage 3-4 with early cirrhosis that I should do at least 48 weeks AFTER I tested undetectible.. so I was shooting for 60 weeks, but only made 54,, ended up in the hospital needing 2 units of packed red cells as my hemoglobin dropped to 7.0, RBCS and WBCS were both down to 1.0... made me really mad cuz I got this exactly 27 years ago TODAY when I had my first child and I hemmorrhaged and had to have 4 units of blood after delivery...

so happy birthday to my son and to my liver,, sigh,, br54930701 <wreeves126@...> wrote:

--hi, Same thing happened to me. 48 weeks with pegasys/ribavirin. No virus at 3 months, 212,000 at 6 months then at the end no virus. But 6 months later 15,000,000; off the scale I guess. I'm type 1-A and get another biopsy Wednesday, first in over three years. Got my fingers crossed.- In Hepatitis C , perky rose <agann_01@y...> wrote:>> Yes it is a hard time;;;and sleeping it off is the best way to deal with it. I went thru the entire 48 weeks of peg-interferon and ribavarin. The virus was undetectable at 12 weeks. A month after I finished,theapy, however, the virus relapsed (with a vengeance) - quite devastating. So now, I am sitting back, not even knowing what step to take next . Has anyone else relapsed? Do you get back into therapy? IT is quite

depressing.... But luck to those of you still in therapy - hope you are successful > > janet <doc_jade@y...> wrote:Oh Gav,> Sorry you had such a bad time the first shot. Let me give you a little secret. On the day of shot, I literally wear myself out. Do all those little things that I know that will make me sleepy. Then I take my shot, and sleep off the side effects. And honey it does get better as the treatment goes. I am Genotype 1a and yes I have to do the whole 48 weeks. I have 7 more shots come monday, then I will be done. As of now I am still undetectable. So there is a positive side of treatment. Reaching that undetectable!!!> Be sure and let us know how you are doing honey. And remember we are here for you.> Love> Janet> > Z King <gavriella_rachel@y...> wrote:> Well, I took my first Ribavirin and Pegintron 2b shot> Friday night. I have genotype 1a

with a 220,000 viral> load. Hopefully this stuff will wipe it out.> > I know the first weeks of treatment are the supposed> to be the worst, but I didn't expect to get what I> did. Within 4 hours after taking the shot: headache> kicked in, then nausea and SEVERE stomach pain, then I> spent the whole night vomiting and major diarrhea.> Haven't barely slept since Thursday night. Saturday> all day, I had a headache that felt like someone shot> my brains out; Tylenol isn't helping (and I know too> much Tylenol is bad for the liver). So I'm foregoing> that. Today, Sunday, it is a bit better. I'm able to> hold down some protein shake and a bit of cheese. I'm> drinking as much water as my body can hold to ease the> symptoms. Been drinking water around the clock since> Friday. Even keep bottles of the stuff by my bed.> > I'm still a bit headachey and dizzy today, but

I can> deal with it. All I can say is WHOA--Friday night was> the night from hell. Hope this gets easier. At least> my two dogs have been trying to give me comfort. They> seem to know when I don't feel good and will snuggle> with me in bed and bring me their toys.> > I had to cancel my date Saturday with a guy I've been> dating the past few months. When I told him why (the> fallout from the treatment) and about the HepC, he> freaked. I told him I didn't want to have this kind of> serious conversation over the phone. I wanted to tell> him in person. He's in total shock and is worried I> gave it to him. That I can understand when people> don't know much about the virus. He asked if I ever> planned on telling him; I told him definitely--he has> the right to know if the relationship gets serious.> And I wanted to make sure I had all my information,> doctor lined

up, and treatment plan in the works. He> said he would call me today, so I'm waiting for that.> > And I am prepared if he never calls again, too. It is> the chance I have to take. But I don't want him to> hang around out of pity or feels he's obligated. I> know there are some people who have had the virus for> years, got married, had kids, and no one ever> contacted it. I'm trying to remain positive about> that. He is a very special person to me, so I'll have> to wait and see.> > Sorry to be such a downer--it's been the ultimate> crummy weekend. I look forward going into work> tomorrow, so I can keep busy and take my mind off of> this...even if it is for a little bit.> > Gav> > > > > >

__________________________________ > - PC Magazine Editors' Choice 2005 > http://mail.> > > I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon> > > It's a pleasure having you join in our conversations. We hope you have found the support you need with us. > > If you are using email for your posts, for easy access to our group, just click the link-- Hepatitis C/> > Happy Posting > > > >

November 1, 2005

Sally,

I really hadn't given cross contamination (one dental patient to

another) much thought but I will ask my neighbor about that too. I

bet he is up too speed there also, this guy is just an incredible

dentist and all around good guy and very bright too. He was

definately more concerned about HIV but it could be because there

may be more of it here. I will ask him.

> > Ric,

> >

> > These risks ARE ongoing. I have to battle doctor offices and

> dental offices

> > all the time about taking HCV virus seriously. They want to think

> its passed

> > by sexual transmission, and we aren't having sex there. Or that

> its *only*

> > transfusion. And the current blood supply is safe. <maybe>

> >

> > I agree that getting tested is important. I'd like to know that

my

> doctor,

> > my dentist, and their staff persons are tested, too.

> >

> > Sal

> >

> > Re: First TX shot--Thought I was

> going to die

> > (figuratively)

> >

> > you know, I would be more interested in telling people

> > the current risks of catching HCV. Some of those you

> > mention are still current. In telling people to get

> > tested, it would be helpful to mention those past

> > risks. Yes,they are still here, but most businesses

> > and medical practices are up to date. Speculating

> > about how we got this disease is the least important

> > part. Getting people tested is.

> >

> > It's a pleasure having you join in our conversations. We hope you

> have found

> > the support you need with us.

> >

> > If you are using email for your posts, for easy access to our

> group, just

> > click the link--

Hepatitis C/

> >

> > Happy Posting

> >

November 1, 2005

Ann,

Yes, very frustrating. Do you mean 50 million or 5 million? I

remember reading years ago that any of these viral load numbers can

be off by a factor of ten. I'm planning on getting some sort of

retreatment started too. There are the other interferons and then

you could just go with pegasys for a longer period. I began feeling

a little rough about a month ago, really for the first time since I

was aware I had this (1996) and am concerned that it may be the hep

acting up. Tomorrows biopsy will tell the story I suppose. Did you

do the pegasys for 48 weeks? You know, I asked my gastro if there

was any possibility that the HVC could " run wild " after I came off

the treatment and he said " there is no evidence of that " but from

the way he said it I would bet he has heard of it happening.

> > Well, I took my first Ribavirin and Pegintron 2b shot

> > Friday night. I have genotype 1a with a 220,000 viral

> > load. Hopefully this stuff will wipe it out.

> >

> > I know the first weeks of treatment are the supposed

> > to be the worst, but I didn't expect to get what I

> > did. Within 4 hours after taking the shot: headache

> > kicked in, then nausea and SEVERE stomach pain, then I

> > spent the whole night vomiting and major diarrhea.

> > Haven't barely slept since Thursday night. Saturday

> > all day, I had a headache that felt like someone shot

> > my brains out; Tylenol isn't helping (and I know too

> > much Tylenol is bad for the liver). So I'm foregoing

> > that. Today, Sunday, it is a bit better. I'm able to

> > hold down some protein shake and a bit of cheese. I'm

> > drinking as much water as my body can hold to ease the

> > symptoms. Been drinking water around the clock since

> > Friday. Even keep bottles of the stuff by my bed.

> >

> > I'm still a bit headachey and dizzy today, but I can

> > deal with it. All I can say is WHOA--Friday night was

> > the night from hell. Hope this gets easier. At least

> > my two dogs have been trying to give me comfort. They

> > seem to know when I don't feel good and will snuggle

> > with me in bed and bring me their toys.

> >

> > I had to cancel my date Saturday with a guy I've been

> > dating the past few months. When I told him why (the

> > fallout from the treatment) and about the HepC, he

> > freaked. I told him I didn't want to have this kind of

> > serious conversation over the phone. I wanted to tell

> > him in person. He's in total shock and is worried I

> > gave it to him. That I can understand when people

> > don't know much about the virus. He asked if I ever

> > planned on telling him; I told him definitely--he has

> > the right to know if the relationship gets serious.

> > And I wanted to make sure I had all my information,

> > doctor lined up, and treatment plan in the works. He

> > said he would call me today, so I'm waiting for that.

> >

> > And I am prepared if he never calls again, too. It is

> > the chance I have to take. But I don't want him to

> > hang around out of pity or feels he's obligated. I

> > know there are some people who have had the virus for

> > years, got married, had kids, and no one ever

> > contacted it. I'm trying to remain positive about

> > that. He is a very special person to me, so I'll have

> > to wait and see.

> >

> > Sorry to be such a downer--it's been the ultimate

> > crummy weekend. I look forward going into work

> > tomorrow, so I can keep busy and take my mind off of

> > this...even if it is for a little bit.

> >

> > Gav

> >

> > __________________________________

> > - PC Magazine Editors' Choice 2005

> > http://mail.

> >

> > I am a rock, I am island...and a rock feels no pain, and a

island

> never cries...- Simon

> >

> > It's a pleasure having you join in our conversations. We hope

you

> have found the support you need with us.

> >

> > If you are using email for your posts, for easy access to our

> group, just click the link--

> Hepatitis C/

> >

> > Happy Posting

> >

November 1, 2005

, viral load numbers always jump way up after

unsuccessful treatment. For what reason? what does it

mean? 'm not sure. Personally I believe the bugs that

remain are mutating and becoming even stronger.

Something your bodies immune system takes longer to

build up strength and the bugs do replicate like

crazy. Same thing happens after transplant. viral load

could skyrocket. The good thing is even with viral

loads in the multi=millions, you could still have

minimal liver damage. I know it doesn't make much

sense, but thats our disease.

ps. good luck getting your dentist or any doc to admit

that they may have HIV or HCV....ric

November 1, 2005

Ric,

So your viral load does rise after a failed treatment? That is news

to me but sure makes sense. Do you suppose that causes a progression

in liver damage, ect.? Maybe I have heard that about transplant

patients though. I bet my gastro doctor knew that also but he just

didn't want to discuss the issue with me.

Slagle

In Hepatitis C , Ric <richobbs1@y...> wrote:

>

> , viral load numbers always jump way up after

> unsuccessful treatment. For what reason? what does it

> mean? 'm not sure. Personally I believe the bugs that

> remain are mutating and becoming even stronger.

> Something your bodies immune system takes longer to

> build up strength and the bugs do replicate like

> crazy. Same thing happens after transplant. viral load

> could skyrocket. The good thing is even with viral

> loads in the multi=millions, you could still have

> minimal liver damage. I know it doesn't make much

> sense, but thats our disease.

> ps. good luck getting your dentist or any doc to admit

> that they may have HIV or HCV....ric

>

November 1, 2005

When I failed tx, my viral load went sky high too. I started tx

with it at about 50,000 and when I failed tx, it was up in the

millions and has stayed that way for 3 years now.

Judi

> >

> > , viral load numbers always jump way up after

> > unsuccessful treatment. For what reason? what does it

> > mean? 'm not sure. Personally I believe the bugs that

> > remain are mutating and becoming even stronger.

> > Something your bodies immune system takes longer to

> > build up strength and the bugs do replicate like

> > crazy. Same thing happens after transplant. viral load

> > could skyrocket. The good thing is even with viral

> > loads in the multi=millions, you could still have

> > minimal liver damage. I know it doesn't make much

> > sense, but thats our disease.

> > ps. good luck getting your dentist or any doc to admit

> > that they may have HIV or HCV....ric

> >

>

November 1, 2005

Judi,

I'm learning something I never knew. Why don't these doctors tell

you this, surely they know about it. Maybe for some of us, unless

we go for the really long treatment maybe it is better not to treat

in the first place.

In Hepatitis C , " judi " <judirachel@y...>

wrote:

>

> When I failed tx, my viral load went sky high too. I started tx

> with it at about 50,000 and when I failed tx, it was up in the

> millions and has stayed that way for 3 years now.

>

> Judi

>

> > >

> > > , viral load numbers always jump way up after

> > > unsuccessful treatment. For what reason? what does it

> > > mean? 'm not sure. Personally I believe the bugs that

> > > remain are mutating and becoming even stronger.

> > > Something your bodies immune system takes longer to

> > > build up strength and the bugs do replicate like

> > > crazy. Same thing happens after transplant. viral load

> > > could skyrocket. The good thing is even with viral

> > > loads in the multi=millions, you could still have

> > > minimal liver damage. I know it doesn't make much

> > > sense, but thats our disease.

> > > ps. good luck getting your dentist or any doc to admit

> > > that they may have HIV or HCV....ric

> > >

> >

>

November 1, 2005

, I have always wondered that too,, some ppl when they dont have a good response to treatment find that their virus has mutated and when it does that, usually it thrives and runs amoke and makes more damage than it would have if left alone.. THIS is exactly why we need more research into NON Interferon tx,, but its gonna be ages before they do that,, too much money in INF and Riba,, sigh,, br54930701 <wreeves126@...> wrote:

Judi,I'm learning something I never knew. Why don't these doctors tell you this, surely they know about it. Maybe for some of us, unless we go for the really long treatment maybe it is better not to treat in the first place. In Hepatitis C , "judi" <judirachel@y...> wrote:>> When I failed tx, my viral load went sky high too. I started tx > with it at about 50,000 and when I failed tx, it was up in the > millions and has stayed that way for 3 years now.> > Judi> > > > >> > > , viral load numbers always jump way up after> > > unsuccessful treatment. For what reason? what does it> > > mean? 'm not sure. Personally I believe the bugs that> > > remain are mutating and becoming even stronger.> > > Something your bodies immune system takes longer to> > > build up strength and the bugs do replicate like> > > crazy. Same thing happens after transplant. viral load> > > could skyrocket. The good thing is even with viral> > > loads in the

multi=millions, you could still have> > > minimal liver damage. I know it doesn't make much> > > sense, but thats our disease.> > > ps. good luck getting your dentist or any doc to admit> > > that they may have HIV or HCV....ric> > >> >>Jackie

November 1, 2005

Sally,

Perhaps there might be more diagnosed HIV than HCV, but believe me, for every ONE who has HIV, there are FOUR of us with HCV,, its just that HIV has gotten all the publicity!br54930701 <wreeves126@...> wrote:

Sally,I really hadn't given cross contamination (one dental patient to another) much thought but I will ask my neighbor about that too. I bet he is up too speed there also, this guy is just an incredible dentist and all around good guy and very bright too. He was definately more concerned about HIV but it could be because there may be more of it here. I will ask him.> > Ric,> > > > These risks ARE ongoing. I have to battle doctor offices and> dental offices> > all the time about taking HCV virus seriously. They want to think> its passed> > by sexual transmission, and we aren't having sex there. Or that> its *only*> > transfusion. And the current blood supply is safe. <maybe>> > > > I agree that getting tested is important. I'd like to know that my> doctor,> > my dentist, and their staff persons are tested, too.> > > > Sal> > > > Re: First TX shot--Thought I was> going to die> > (figuratively)> > > > > > > > you know, I would be more interested in telling people> > the current risks of catching HCV. Some of those you> > mention are still current. In telling people to get> > tested, it would be helpful to mention those past> > risks. Yes,they are still here, but most businesses> > and medical practices are up to date. Speculating> > about how we got this disease is the least important> > part. Getting people tested is.> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > It's a pleasure having you join in our conversations. We hope you> have found> > the support you need with us.> > > > If you are using email for your posts, for easy access to our> group, just> > click the link-- Hepatitis C/> > > > Happy Posting> >

November 1, 2005

Hi Ann

No both of my children are negative at this point for Hep altho both of them have done things that are ways of spreading this disease,, both have been stupid enough to use meth,, son used needles but never shared and daughter used straws ,, I am horrified at how much this disease is going to explode in the near future.. Ann, PLEASE re-think your decision to do ANY tx you can find,. the reason I say this is first, the treatment is difficult, its doable but difficult and if you are going to do it, make sure your LIFE and work and relationships are all in a good place and supportive of your doing tx,, and second, IF you dont have much damage, and you treat and for some reason it fails,, your hep can take off like a scared rabbit and can mutate into a worseing disease.. There are some studies that show the EARLIER you tx, the better, but just get ALL the info before you make any decision..

hugs ann,

jaxperky rose <agann_01@...> wrote: