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Avatar universal

Spreading the virus?

I was mowing the grass the other day and stubbed my toe and it started to bleed are the ants going to give the dreaded virus to the kids on the block? Well the answer of course is no!!

I understand people have sx when there on treatment, but I read a post the other day about not being able to swallow post tx then some one replied that they couldnt swallow two days after there first shot, Is it possible to bring these symptoms on ourselves? Honestly during this tx I never even worried about a thing and never knew of this website until post tx, it seemed the more I read the more worried I got,When I see comments like should I make my funeral arrangements? "I just want crawl into a dark hole" Things like that do not help people that are recently dx and alot of the stats I have read on the majority of the symtoms I see here are rare but it seem 90% of the people have them, Don't get me wrong this site has been very informative in small doses, Too much of a good thing can also be harmful.
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Avatar universal
Thanks for sharing your thoughts. A little while ago, we had quite a number of posts regarding post treatment side effects and how constructive it is for people to share their stories -- with some expressing concern that it may scare others off treatment, or not present a fair representation of what people really experience on treatment.

The consensus seemed to be that it's important for all of us to honestly and openly share our experiences be them good, bad or ugly -- so that those making treatment decisions can have the benefit of as much information as possible, including the anecdotal information here.

As far as some symptons being "rare", this may be your experience or what your doctor may have said, but many of us have a feeling that symptons -- whether during tx or after -- are often minimized by the doctors and drug companies, with hardly any -- if any -- trials/studies on what these drugs actually do to you long term.

If you're interested, you might want to sift through some of the threads to see what folks had to say on both sides of the isssue.

http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html

-- Jim
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Avatar universal
Oh, I should caution you that if you do decide to treat the ants with any of your left over peg or riba, try and leave some fatty food out on the pantry so the riba will be better absorbed.
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Avatar universal
Oh jim I'm going to get fired, I won't have to quit, I just laughed so hard that people turned around and looked at me.  Thanks...life has been h3ll on all personal levels lately and that is the HARDEST I've laughed in ages.

Ants LOL peanut butter and riba sandwiches. Oh dear.


I had NO side effects the first few nights of the shot and my own doctor was BLOWN AWAY and said he had NEVER had any patient that this had happened to.  In fact I think he refused to believe me.

But over time all the sides came SWOOPING in big and bad.  You see there are different sides at different times during treatment. ANY doctor that would say most people DONT have sides...well he is plain wrong and gave the completely wrong information to you.  Or perhaps you heard it wrong because that is FALSE.

While SOME people don't have the flu symptoms or such at first you will be hard pressed to find ANYONE who never had ANYTHING (ie: anemia, low whites, riba rash, riba rage, memory loss, joint pain etc) during the course of the entire treatment.

Most of us find them miserable but tolerable...but to say most people dont get them goes against every single piece of information I've ever heard or read and against every doctors advice that I nkow.

I'd question just how much hep experience your doctor has.
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Avatar universal
Yeah, leaving those peanut butter sandwhiches out is the easy part, things get trickier (and quite messy) when you try to
"pinch an inch" to get that needle in.
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137539 tn?1344379928
I am just starting treatment and I find the information found and discussed here very informative. And while I am not "expecting" to have any of the sx's it is nice to know that if something comes up that I do not understand, I can look here and usually get an answer in the archives or just ask the question.  
I believe most people here know that the side effects are subjective to each person and no one person reacts the same to the same treatment.  Keeping up with the various side effects that "could" happen and that have happened to people here also lets me know if they are normal or if it is something I should be calling my doctor about.  I do not want to be calling my doctor with every little ache and pain or as of yesterday "red mark that just showed up".  
Also there are a lot of people here dealing with various SX's that can be treated with over the counter remedies, to me finding out what has worked for many helps me to know what to try first.  
After leaving my Dr's office from the teaching and spending almost all day there I was still filled with more questions than answers and more fearfull of this treatment than I am now. I found this site a week later and feel like I can handle this and get thru it.  Also I am from a small town where there is no support group for people dealing with this disease.  I feel that I will get the support here that I can't get anywhere near my town.
Knowing all of the real possibilities of what "can" happen with this treatment does not scare me or make me not want to do this treatment, in fact I feel that I am more informed now than I was before I found this site, and I am even more ready to fight this dragon and get it out of my system.
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Avatar universal
I would agree with Jim.  I'd be interested in seeing the studies which claim 90% experience no sx's when even the product insert for the meds show at least a 60% rate of sx's in patients from their clinical trials.

I guess the bottomline is: "Who do you want to believe, stats or the *real* life experiences of this enduring the tx?"  I would also question where do the stats come from?  Do they claim to have an actual scientific means of measuring how a person feels or what they experience?

I recently talked with someone in the medical profession who has worked with HCV patients for sometime.  After undergoing tx himself and he stated that he had no idea what tx was like until actually experiencing himself.

Perhaps it's the blood/brain barrier being breeched by the meds which has everyone psychosmoatically believing they're experiencing the sx's when in reality they're fine.  Then again perhaps it's the agents of the Matrix messing with our programming to see how we react when we think we are feeling aches, pain, and depressed.  Damn, I knew I should have taken the red pill!  Morpheus outright lied to me when he said everything would be as it was if I took the blue ones.
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Avatar universal
My doc puts it at about 40% of people treating that have "little or no" side effects. He also says less than half of his treating patients ever need "rescue drugs" but it seems from this board that practially everyoe treating needs them. In my case he is right, I have been treating about a year and have not ever had to use "rescue drugs"
Keep in mind the people that are feeling rotten are looking for others in their situation and looking on the internet for answers so it might appear there are more problems treating than there are in reality. The people feeling fine are likely to be out living and working like normal.It is easy to get "med school malaria" which is what happens to doctors studying in med school, they begin to think they are getting symptoms of the diseases they are studying in school, a similar thing can happen on the internet. There is good info to be had, you just have to sort thru for the info you need and ignore the rest and always discuss your concerns with your treating physician..
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Avatar universal
agents of the Matrix

And here I thought I was going to blow the secret myself and spill it in here!  

Sometimes, seriously, I wish I could get out and then let them bribe me and put me back in like Joe Pantaleono (sorry spelling)...just put me back in a new, nice life and it's FINE.  Leave me hooked up.

I keep thinking it's all my fault cause I should have taken the red one too!  ;)
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Avatar universal
Sorry I meant to write to Rocker too that I was going to try the organic ice cream tonight too and I forgot to put GOgo in there also.

it's going to be heat index of 120 degrees here today so.....I think if I am ever going to spend money on organic ice cream...it will be today!
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Avatar universal
At 120 heat index you better take a spoon with you to the store or it will melt before you get home!
Hang in there with that heat, I don't know how you guys can stand it if it gets to 80 here it is too hot for me!
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Avatar universal
120!!! it is ONLY going to be 106 over in LI with the index factored in. The state park beaches are waiving the parking fee, so I think it is going to be packed at Jones Beach today. The water will probably feel good when it usually freezes your but off! hum! I am talking myself into playing hookie...

at least is not like LA, with over 100 degrees for a month!
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Avatar universal
That's what we had all weekend.  Take heart, it statrted cooling down Tuesday and we're only hitting 80 today, so relief is on it's way.
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Avatar universal
Jim LOL, I'd love to see a study on ants and riba treatment, how many of them had sxs, how many have reached SVR.....

Rocker, no offense intended but do you all remember when my daughter almost killed me because she was feeding me all organic food.  I ended up in the hospital for lack of fat intake, etc.  I think durning treatment that keeping your weight steady is more important then always eating healthy.  When I started to eat to keep my weight from dropping to much I felt a lot better and was able to with stand tx better.

Bob  :)
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Avatar universal
Jakish - you are funny, and you make some darn good points.  I haven't faired too badly on treatment either, but I have still felt really really isolated.  I haven't shared with too many people about my treatment so this board has been a great place to feel like I belong.  -- I do think it is easy to obsess about it but if you are able to sort and sift data to form your own conclusions the combined knowledge and experience here is invaluable.

ny - I feel for you with the heat hitting the pavement.  Soooo much hotter in the asphalt jungle.  Grandoak too -- didn't I read that you were getting 100's in Minnesota?  Yikes!  Fishdoc and me here in the sunny southwest deal with 100's all the time, but we usually don't have that nasty humidity.  Good luck to all having to deal with this heatwave.

I have just been Amdro'ing  those ants but maybe I will crush the left over Riba and spread it attractively over their sacred ground (my whole yard) with a tad of peanutbuter.  sounds like a plan
frijole
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Avatar universal
Dale, I believe you were commenting about mosquitoes on riba hitting the wall.  Any observations if ants on riba do the same?  Perhaps they crawl up the wall and drop off near the top?

Do army ants on riba march in step or like a bunch of drunken sailors?
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Avatar universal
I never said 90% of the people dont get sides i said 90% of the people here seem to have the sides, But everything I have read seems about 30% to 50% get the sides I see posted here.
Dont put words in my mouth.

By the way all the ants in my yard are foggy headed with blured vision,vomiting,depression a wicked funky rash and they wont even eat the sugar I poured all over the ground.But I did see one knocking back a bud must of had a good hep doctor.
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Avatar universal
Haha Jakish at least you have retained your sense of humor!
I hope your sides are minimal and treatment goes by fast for you.
Hopefully we will all achieve that precious goal...SVR.


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132578 tn?1189755837
Jakish , I know this can be a scary place. That is what makes it so important , but we not all doom sayers , all though it may seem like it at times . Most of us will come through this without being completely ravaged by the tx , all though it doesn't seem like it at times...
This is our reality , good or bad , thats it. Its what we all have to deal with and somehow our spirts rise to the occasion and we meet the disease and tx head on and we battle. Some of us do become overwhelmed by the tx. Our friend Strator is having to rethink his options because his body just cant keep up with the demands of the tx. There doesn't appear to be any rhyme or reason as to who can go through this and who cant . This forum is jam packed full of HCV patients that use this forum as an information pipeline and a way to keep up different sx that other members are experiencing. We are inundated (thats right ,I said inundated) with posts to the point that the reader is overwhelmed by the shear numbers and the stark reality of the treatment. Not too many of the members post just to tell everyone that all is ok , some do , and are a breath of fresh air ,but they seem to get lost behind the outrageous side effects that so many of us have.( one of them is forgetting how to spell.. and not caring)

I wouldn't know what to do or where to start trying to make the forum easier for new patients and members. I't kind of defeats the purpose. There is more reality in one days posting than you could get out of every paper written or "informational" webb site you could ever find.

Your suppose to be afraid. I'm afraid. Anyone that tells you they aren't may not be fully in touch with the same reality we all share.

later...
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Avatar universal
I went through the treatment too, so if I wasnt afraid that makes me not in touch with reality? The whole point of the post was sometimes people may read too much and start thinking of the sx there going to have before they even start tx.

Jakish
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Avatar universal
My bad. sorry, really I wasn't trying to put words in your mouth.  Brian Fog has been visting me a lot lately, maybe the 100+ heat with 80 degree dew points we've had lately that has drawn him up from FL.  I must have gotten confused by the sx's are rare comment connected with 90% remark being used in the same sentence.

Dang it's frustratin when short term memory isn't what it used to be.  My wife always asks "What's the big deal", but then I remind her that being blonde she might not understand.  Of course that's right before I wind up taking a short nap and wake up with a goose egg on my head, not remembering how I got it. She says it might be because my short term memory is foggy due to my tx and I shrug it off.  But I can't help but wonder why so many of our pans are now rocking when I put them on the burner these days.
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132578 tn?1189755837
I'm sorry , I spaced out the part about you having gone through tx already. Its great that you did it without fear and had I sensed that from your post I wouldn't have tried  to make you feel that its ok to be afraid , like I would a new member. Its just that words like "worried" and "crawl into a dark hole" just kind of come out as "afraid". My apologies. I personally havent brought any of the sx I get from treatment "on myself" . Did you not have an sx during your treatment , and did you bring them on yourself?
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132578 tn?1189755837
Jakish,Jakish,Jakish.
First let me say that I have personally been scared ****less from some of the posts I have read here.
Do this for me , search the site for Riba Rash. You will find a post that is titled "Ribaviron side effect of mysterious rash"
dated 03/03/2002. When I was researching tx prior to starting tx , I was looking for any info I could find and this was the very first post I came across about Riba Rash. I definitely here what your saying about needless horror stories.

Remember , these folks here are not making this stuff up. Something is causing these sx and the only way that they are going to know and that we are going to learn is to get it all on the table where we can see it and evaluate it. I guarantee that if someone is giving bad information or causing needless fear and worry in this forum , someone is going to say something about it .

The fear I'm talking about that runs through here like a thread isn't fear of loss of life , its the fear of living and somehow being disabled during treatment and not being able to continue to meet the responsibilities of family , work and planning for the future. Many people here are so beat down by the treatment and have to continue to work through it because they cant afford to loose the insurance that their job affords them. That's scary. Missing work or loosing jobs ,putting bread on the table , maintaining relationships , the stigma of the disease and how they are seen in the eyes of their peers. This is the kind of fear I'm talking about and If you will notice , its the kind of fear that no one talks about but that is always present like the proverbial 800 lb. gorilla in the middle of the room.

Your turn. Hit me :)

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Avatar universal
Stick a fork in me I'm done.
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132578 tn?1189755837
Me too.
Have a nice day and dont take any cr*p off those ants, They knew thejob was dangerous when they took it.
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