Anecdotes, opinions, advise etc. cont....

I am extremely sad to see 52tele leave the forum. These topics have created some bad vibes for me as well. I think I do post opinions, give info on where I got the stats etc. I agreed with Tele, lighten up. Sometimes, most likely because of these drugs I probably don

[jmjm530]

Again, I am sorry if I gave you and others the impression that there's a "right" or "wrong" way to post. I'm also unaware of the other stuff you're talking about from the past few days on this topic. I was trying to make what I thought was a narrow point and obviously did not communicate it very well and to do it all over again, I probably wouldn't. I do hope that the "rudeness, disrespect and intolerance" you state was not directed toward me. I try to be respectful of everyone here and hopefully I do a decent job of it.

-- Jim

[way]

I agree with you totally.

The first time I posted I was mocked. And ever since then I have been VERY CAREFULLY wording posts and --like you said "walking on eggshells" That is why I just usually "lurk" and sooner or later someone will address my concerns.

If I feel I have a problem and really need to post I just pray that one of the frequent posters will answer, and they usually do. Sometimes I am ignored. Oh well.

I have posted about having very mild sx's (which was kind of a debate)and thats because I want the newbies to not be so scared and know that not everybody get's them.

[Paris47]

I think you said this well, and I appreciate this thread,
I have had a hard time with this situation,
some seem so close and some are ,,,,just out here...
not close.
I have found the web site referred to
earlier Janis&friends to
be very supportive enviroment &
with the open forum chat,
I feel immediate support.
So many wonderful folks on this site,
we are all in this
together...we will make it..
right?

[cuteus]

please continue to do what you are doing, even when you think it is not making a difference. It is, to somebody that might just be lurking.

[jmjm530]

Well, I was afraid to re-read my original post in the thread I started this morning, based on some of the critcism it's receiving. But I just did, and I really don't get what this is all about.  I thought I was trying to help out many of the newer members by asking folks to consider putting things within a context so the newer folks will get a more accurate picture of things. While directed to all, as Chevy mentioned, it was directed least of all to those very new here. I'll just finish by saying that we all have the right to our opinions and the thread I started this morning simply stated mine. If people want to leave because of that, again, I don't get it. Personal attacks are another matter and I have stated my distaste for that on numerous occasions. But that is not what my post was about.

-- Jim

[sfbaygirl]

It's not you or your thread or posts. I agree we need to put things in context. This topic is just similar to the posts over many days now that seem to tell people how to post etc. You are polite and respectful and I wasn't referring to you at all. You help us all so much. I just don't want to get into name calling like the posts I have seen. So I won't mention names or threads.

I just want us to all be aware how fragile everyone is on tx, off tx and pre-tx. One poster complained about people posting lab reports. That is sure to scare off newbies. This is one example. I don't know, maybe the riba rage has hit a few of us. I would like to think that is the case and not that people are so insensitive.

Thanks for the compliment. I really enjoy being here on this forum and the friends I have made. I don't know what I would do without you all.

[Algernon]

I love Tele and his sense of humor and his good sense. We need him.

I love Jim's advice and we need him.  On several occasions, especially early on, I went to him for advice because I know that he's knowledgable.

Lately, I've found it harder to come here too.  I thought it was because I was in post tx limbo but, in part, I've felt overwhelmed by the number of threads (enough already) and by the changing tone of the posts.  It's not just that some of us feel riba-tated.  It's also that a lot of us feel emotionally fragile and self-conscious.  It can be a tough combo (and we all know about tough combos...).

NEWBIES:  I've been here long enough to realize that there is a cycle that we all go through here.  And for those who are early in TX, you'll be amazed to find how quickly you become one of the post TX folks.  TO THE "FPs" and the old guys:  You're the reason I got through TX.

[jmjm530]

Thanks for the clarification and try not to let the bad stuff get to you.

As you so well put it, it's important for all of us to be aware how fragile we all are, especially those on the treatment drugs.

-- Jim

[amirtracy]

This place saved me from true despair when i was first diagnosed and some days continues to save me. sometimes nothing applies to me, other times everything seems to. i have never been in a chat room so i don't know what they're like, but i have come to truly care about the people on this forum. I feel like i know some of you and i feel connected here, whereas i don't lots of other places in my life because of this disease. i don't feel bad for saying hello to someone or talking about things that aren't hep related. sometimes people just want someone to say hello to them. sometimes people just want to know they're not alone. what's wrong with that? BTW, i'm not doctor and this is just my opinion. LOL. where ya at TELE?

[DoubleDose]

I am not sure that I read anything that 52Tele said in Jim's earlier thread that would indicate the slightest upset or disagreement on his part about Jim's post.  On the contrary it seemed that 52tele had agreed with what Jim had stated, and later in the thread indicated the need to take a break from the forum.  Many have done the same in the past, for many personal reasons, and sometimes that is a good thing.  It does not have to have a negative, or critical connotation.  Sometimes we can feel too 'dependent' on the forum, of overly wrapped up in the daily give and take.  Clearing the air, and refocusing is often a welcome and refreshing tactic.

I did not find anything even remotely out of line, or critical in Jim's thread, and I think he stated a clear opinion of what might help clarify information that we members disseminate in our discussions.  We are all free to post exactly as we desire, and reading comments from other people about what approaches might be constructive gives us all fodder for thought.  I do not believe anyone is trying to tell anyone what to do, or how to do it, and Jim of all people is one of the most even-keeled, objective members on the forum, in my opinion.  

Its easy to take some things the wrong way, especially for those who are on tx, or having problems from their HCV (or post-tx**).  This illness, and the tx that we undertake to treat it are notorious for causing lots of psychological drama, and over-reaction.  I hope we all, including myself, can bear this in mind, when we read the daily threads.  Sometimes we tend to be a little 'thin-skinned' and to 'jab back' quickly at members' posts without realizing that many factors often are weighing on our judgement.

I think we all have good intentions, and maybe we need to give a little more latitude to everyone, including ourselves.

The forum seems to be working just fine, and suggestions or opinions are always welcomed.  

I hope this post finds everyone on the forum doing well, and feeling hopeful about their futures, no matter what the obstacles ahead involve.  We are all here to help each other, and I appreciate what we are all trying to accomplish.

DoubleDose

[jmjm530]

Well said and thanks for the kind words. Lately my post tx problems have gotten to my head almost as bad as the riba, but of course in a different way.

Maybe you can relate. You speak often of some of your post tx problems on an intellectual level, but wondering how it affected you mentally and how you cope.

-- Jim

[Morgaina]

you guys,our whole world that we can relate to is shrinking to this forum.This isn't good or bad, we are just fortunate to have it.When you consider its like a couple dozen people being closed up together on mood altering drugs, I dont think things have gone so bad! We are human and crabbier than normal humans at that. And as I've mentioned there is a high standard of intelligence to get offended and crabby with! Lets get back to accepting each other for all of who we are, after a couple divorces it starts to make sense. I know I'm a new mouth around here (since I ended treatment I can make sentences) but really from an out side view, this place is outstanding!!!

[Forseegood]

Really good posts...sometimes, when I think that certain members have maybe misinterpreted what I was trying to say, or what someone else was trying to say, whatever....I have to stop and remember I'm not treating, God knows what I'll be like when I do, those gotta be some strong drugs and they "can" mess with mental chemistries, at times, in some people...I think the majority here do amazingly well considering the chemicals, pressures, etc, they are under...

As long as things aren't really mean spirited, name calling, overly harsh or personal, etc...I'm fine with whatever goes on...and I am sometimes in outright awe of what some members here deal with on a day to day basis, yet they continue on and have a laugh, etc...I'm truly humbled by this phenomenon at times...

[sfbaygirl]

As I said it wasn't Jim's thread that did it for me or tele or Way. I am talking about blatant insults, put downs, and downright meaness. These have happened over this week of so (longer in Way's case). I don't tolerate my husband raising his voice to me or being disrespectful, especially now that I am on tx. I just can't take it. Perhaps these posts are hard to notice with all the posts and threads, but I have and it really started bothering me when Tele left. I am not the only victim of this disrespect and it doesn't seem like Spacecoast's posts, who really put it out there. These are ugly put downs and I hope we all notice them when and if they continue. I think it would be good to call someone on their insensitivity.

For instance, Way on her first post was mocked. I remember that. We all should have jumped to her defense. BTW Way that guy who posted was kicked off this forum.

[Morgaina]

I agree completely that hepc has affected my brain in many different ways. Sensory problems, mood, ability to trust what I feel and interpret others actions and words. Never knew why that was but there is a marked improvement since treatment.(good thing too, I start a new job in a high school in Sept)I'm really curious as to how many others have experienced difficulty with the mechanics of their brain? On the bright side, it really helped in understanding my students!

[Moniker]

Hi Jim, I think it would be good to be able to show people any study that you make reference to. Here are two links to threads where you said that studies showed something. You couldn't tell me how to find one of the studies you had seen. I was very upset at the time from the meds, and I got more upset because I began to question if my treatment was doomed from the start. I'd been undetectable from the first PCR at week 12, and again at week 24 but my Pegasys had been reduced during the first 12 weeks of tx. I wanted to read one of the studies you'd read so I could understand what I needed to do and so I could print the study out and show it to my doctor. You couldn't direct me to a study, and the only study I could find seem to indicate that lowering Pegasys during first 12 weeks wasn't too serious. I was very confused because you said there were other studies and I wanted to read them. I couldn't find the studies you said you'd found.

Jim, here is a link to the time you wrote: "However, the most current thought based on newer studies stongly suggests that reducing meds during the first 12 weeks has a negative impact on SVR (cure)."

http://www.medhelp.org/forums/Hepatitis/messages/40493.html

Here is the second link when the discussion continued:

http://www.medhelp.org/forums/Hepatitis/messages/40530.html

[Moniker]

I'm sorry the links above don't work. If you take the URL and copy it and paste it, it'll work that way.
Bob

[Morgaina]

I am a special ed teacher dealing with behaviors for the past 15 years.We have 2 rules: dont engage in other's negative behavior and dont take another's difficuly personally. Not always easy but you can be assured there are many others that got yur back. Sometimes we just need time to re-charge. This is a terrible time to feel hurt, especially by your backers.So sit back,think about all those that are right here with you and have faith that the good will always prevale.........Diane

[DoubleDose]

I can come across as cerebral, often because I hate to show the emotional impact of this disease, and treatment.  I am often a 'basket case' myself, and I do not bring it up enough on the forum so that others can understand what many of us are dealing with.  My post-tx issues wax and wane, are physical, mental, and emotional...and lead to frequent 'painful' interactions with others, mostly my family.  I am capable of feeling 'pushed around' or manipulated at home, when after reflection I often realize that I was grossly mistaken in my perceptions, and emotional reaction.  I often feel vulnerable, and anxious, much more than ever pre-tx, even though I did have depressive and anxiety issues many times over the years before tx.  This current emotional state is much more pronounced, and variable....one day I feel happy, secure, and energetic, the next day I feel discouraged, filled with worry, suspiscious of others' motives, and just plain 'off balance'.  I HATE feling emotionally distraught, or unstable.  I have built a great family, marriage, business, etc. and now I frequently fail to feel the joy and pride that I have always felt.  I think it is DIRECTLY related to brain chemistry and CNS changes after doing so much interferon.  Several doctors I have seen agree completely.

The problem is how to cope with these unseen and sly forces.  Often we take them at face value, and don't understand that we may be in the grip of a depressive attack, or surge of anxiety.
I think there is much to be learned about the ramifications of tx, and the after-effects of having the virus itself.  I have always believed that the virus begins the problems by causing behavioral, brain, and cognition problems.  Having HCV I was a far different person psychologically than I way as a youth.  My attitude, feelings, energy, and behavior subtly, and sometimes not so subtly changed in a darker, more inwardly focused, fearful direction, after developing HCV many years ago.

I can totally sympathize with you Jim regarding emotional bouts, and reacting 'differently' to various situations.  Try not to be too hard on yourself for these problems, since they are not really under your control, and are often very cleverly disguised from your awareness.  Often retrospect brings these behavioral, emotional problems into focus.  I have caught on lately, and am trying to 'short-circuit' these behaviors when I see them rearing up.  Its hard, and I don't always see them in time, but I am making a dent.  I am cutting my wife a LOT more slack these days as far as how I react to little things. etc.

Hope you are well.  Keep up the great work on the forum.

DoubleDose

[sfbaygirl]

No worries! I have no intention of leaving this group. I have become attached to all of you. Like a kicked dog, I cowered away, but I came back. I avoid those posts and disrespectful people.

I just think it is good to bring up. As we can see there are more than I that are noticing this. I am very fragile now and perhaps more sensitive, but I don't think that is a bad thing. We all need to be "nice" and not put down newbies or others on this forum. I agree, it doesn't happen very often. I have only been bothered recently. I just felt it was my "duty" to say something.

Whether we say that we have horrible sx or no sx, one should not feel reluctant to post because of scrutiny. We all have different opinions and experiences. It doesn't mean we can't get along. I think it was Tele that said there was nowhere else on earth that so many different peoples, different countries, races, politics etc could come together and get along.

Now we have lost that member because of our differences. Sad.

[Forseegood]

Hi, glad youre staying around, one thing I've noticed over the relatively small amount of time I've been here, and I hope I'm not overstepping my bounds by saying this, but I have often seen people who announced that they would never come back, and they come back...please don't worry too much, things have a way of healing up soon enough...I hope youre treatment is kind to you this weekend and you can have some joy and fun...

[DoubleDose]

Hey, we are all with you.  I don't think that the great majority of people on the forum choose to insult or ridicule other members, nor do they want to see others do it either.  I think we are all pretty quick to come to the defense of members who are being insulted, harrassed, or mistreated.  I have not seen the posts you are referring to in recent days, so I can't really address your specific concerns, but we all have seen some of these things in the past...they happen...and usually these offensive, or whacko types get tired of being a pain, and go away on their own.  Usually they are quickly put in their place by forum members when they are way out of line, and from what I have seen in the past these 'bullies' usually pack up and go back to wherever they came from.  The more reasonable forum members (the great, great majority!!!) seem to form a community, and most are still here, or visit frequently.

All I can say is that you have to weigh leaving the forum because there are occassional 'offensive visitors', and lose the great benefits of this community, or...maybe try to shrug some of it off, choose not to engage, and let these 'painful head cases fade away when they get tired of the loud 'silence' directed back to them.  I hope you choose to persevere, and maybe join the 'thick skin' club.  I know it can be difficult under many circumstances, but overall the forum will provide you with much more positive than negative over time.  And, it can be the difference between making it through and failing for some.

Don't give up on this group, you would do yourself a disservice.

DoubleDose

[beamishboy]

well,i must say this has been a most enjoyable& informative thread...Thanks to all of you for candor& compassion...I need this place and everybody here...that's not an opinion,that's a fact!

[Forseegood]

hey, 5 Guys Named Moe, Sat Night Fishfry, and Choo Choocha Boogie to you! a fellow Louie Jordan fan! there isnt happier music out there!

[beamishboy]

yeah,it does get me tapping&snapping...! music helps soothe my savage beast that the meds keep prodding w/ a sharp stick....nice to see you up & about at this hour.

[jmjm530]

Bob,

Thanks for digging up the threads. I've re-read them.

First of all, studies DO show that reducing meds during the first twelve weeks of treatment can have a negaive effect on SVR. I later (in same thread) went on to refine that by pointing to the 80/80/80 rule. At that point I believe you asked for a link to the studies.

As I mentioned in a previous discussion on same topic, I post more studies than most here, and not as many as others. It's very time consuming and sometimes I don't have the time and energy. In this particular case I DID tell you how to find the study in post 35C. I said: "I can't pinpoint the study but you can google "hepatitis c 80/80/80 " and probably come up with some hits."

In a previous thread you said you couldn't  find anything after googling, but I just googled "hepatitis c 80/80/80" myself and DID come up with relevant hits. Here is what said "google" came up with: http://tinyurl.com/eqnpd

On re-reading the thread there did seem to be some communication issues between us and I tried to repeat a few thoughts several times. Maybe my fault, maybe yours, probably a combination as is often the case.

I'm sure we can go back and forth on this as well, but I don't see a winner or loser here. Obviously we both have different perceptions of that dialogue. At this point, anyone interested can carefully read through the links you provided in your last post and come to their own conclusions.

But back to what appears to be you main point. Yes, ideally everyone would post the studies they refer to, but none of us are on the clock here and we do as best we can do. Hopefully, when someone posts "studies suggest" and doesn't have the study at hand, those interested will pick up the ball and research it out on their own. Had you informed me at the time that you couldn't find it, I'm sure I would have put some more efforts into looking and clarifying.  But to my knowledge, you waited until now to inform me of all this.

-- Jim

[jmjm530]

Thanks for the response. While treatment is charted, many can end up in uncharted waters afterwards, as I'm finding out. Hopefully, as you suggest, we can find our own guideposts because frankly the  hep c medical community seems to think their job is finished with SVR.

-- Jim

[GrandOak]

Jim: While treatment is charted, many can end up in uncharted waters afterwards, as I'm finding out.

Some, like myself, find out that tx is not as charted as many would like to think.

Perhaps I'm wrong, but if some of my posts which took offense to posts chastising the fact that not everyone paints a primrose path picture of tx or does not scientifically qualify all information they share has offended others and resulted in dissention in this group, then I appologize. I can not tell anymore if it's the meds or me taking trip back to the wilderness, if not all the way back tp Egypt, and using the meds as an excuse.

Perhaps some are correct that sharing experiences which do not paint a pretty picture of tx and as such may scare those considering tx is the wrong thing to do.  I can understand where it might even be more frightening to learn that slaying the dragon may not only be painful and troublesome for many, but even downright elusive for others.

I guess I came here for two reasons, 1) to share my experiences and the information I have and am learning in the hopes that I might make a difference in helping others; and 2) that maybe I too can learn something which will help me find a silver bullet, or at least a chink in the dragons armour, which might help me in my struggle and prayer to attain SVR.

Maybe our former Governor Jesse was correct when he said "Faith is a crutch for weak minds".

For me at least, these recent events have also reminded me too that there is more to life, or at least what may be left of it, than newsgroups and wasting mental energies over something said here.

For those who have shared kind words and information which has given me hope, I thank you!

For those whom I have offended with postings made in response to what I may have mistook as someone trolling the group, at least that's what it used to be called in the early days of newsgroups and chat rooms, or any other postings I may have made, I offer my appologies.

[Moniker]

Hi Jim, Thanks for getting back to me. I still think it's best to have your sources for people if they ask for them. If you post some information which throws a person into a panic, causes them to doubt their own doctor's judgment, makes them think they may have really hurt their chances for SVR, you should be able to quickly produce the source of that information.

The best study I could find at the time said:

Reducing the dose of peginterferon alfa-2a from greater than 80% to less than 60% of the target dose within the first 20 weeks of treatment did not appear to affect either virologic response at week 20 or SVR. Reducing the dose of ribavirin from greater than 80% to less than 60% of the target dose within the first 20 weeks of therapy was associated with a significant reduction in both week 20 virologic response and SVR. In contrast, reducing the dose of either peginterferon alfa-2a or ribavirin after week 20, when patients already had undetectable serum HCV RNA, had no significant effect on SVR. These observations have important implications for the use of hematologic growth...

When I was asked for the URL to that study, I provided it. I think it's important to give people the source because I'm not a doctor, I'm not a scientist, I'm just a poor hepper trying to get through treatment.

I don't want to go back and forth on this issue either; I also have time constraints. Good luck to us all.

Bob

[jmjm530]

Bob,

Sorry. I can't be responsible for throwing someone into a "panic" because I posted that I read that keeping full meds -- or at least 80% of the meds, 80% of the time -- is helpful for SVR. Just like someone who posts you shouldn't skip three shots in a row would be responsible for panicking someone who already did skip three shots. Or someone posting you shouldn't drink alcohol during treatment be responsible for panicking someone who did drink during treatment.

Again, a careful reading of the threads you posted will show that I was trying to calm your waters by pointing out that indeed it appeared you DID take 80% of the meds, 80% of the time. And, regardless of the study you found, if you googled as I suggested, you'll find many citations which suggest that it IS important to take 80%$ of the meds 80% of the time, especially during the first 12 weeks. In fact, you'll find a number of articles that state you could be on shaky grounds even with the 80/80/80 rule and the prudent thing is full compliance on meds whenever possible.

Anyway, the threads are there for anyone interested to read. At this point we'll have to agree to disagree on what transpired.

-- Jim

[jmjm530]

Not to continue but to clarify in case my last post made you nervous about not taking all your meds. I think it important to point out thazt in the second thread you posted, I also told you that since you were non-detectible at week 12, the fact that you didn't take all your meds hopefully won't even be an issue. Have you carefully re-read those threads?

[Moniker]

Jim, You write:
Bob,

Sorry. I can't be responsible for throwing someone into a "panic" because I posted that I read that keeping full meds -- or at least 80% of the meds, 80% of the time -- is helpful for SVR. Just like someone who posts you shouldn't skip three shots in a row would be responsible for panicking someone who already did skip three shots. Or someone posting you shouldn't drink alcohol during treatment be responsible for panicking someone who did drink during treatment.

Jim, do you realize how very condescending you sound? It is easy to make someone panic if that person is on treatment. I followed my doctor's orders and lowered my meds; that's not the same as drinking on treatment which would obviously be against any doctor's orders.

Jim, You write:

Not to continue but to clarify in case my last post made you nervous about not taking all your meds. I think it important to point out thazt in the second thread you posted, I also told you that since you were non-detectible at week 12, the fact that you didn't take all your meds hopefully won't even be an issue. Have you carefully re-read those threads?

Jim, You gave your opinion that my being 12 week undetectable hopefully would make the fact that I followed my doctor's orders ok.

At the time I did Google "80/80/80 hepatitis c" and didn't really find a study which said anything more than what my heptologist at the VA Hospital had already told me. I Googled "Pegasys dose reduction and odds of SVR" and found the study which I sited. I just now Googled "Pegasys dose reduction and odds of SVR" and found this: "Poor Response to Hepatitis C Virus (HCV) Therapy in HIV- and HCV-Coinfected Patients Is Not Due to Lower Adherence to Treatment
Ricard Solà, Josep Antón Galeras, Silvia Montoliu, Cristina Tural, Lluis Force, Sandra Torra, Santiago Montull, Eduardo Rodríguez De Castro, Susanna Coll, Daniel Fuster, Pilar Barrufet, Guillem Sirera, Maria Dolors Giménez, Bonaventura Clotet, Ramón Planas
AIDS Research and Human Retroviruses. May 2006, Vol. 22, No. 5: 393-400"

I'm not trying to win ego points. I'm just saying that it is important to be clear and to back up your statements with links to the studies you site. We aren't doctors here, and so we need to be clear when we talk about the latest studies we have read. If somebody asks to see the study, it would be best to have it for them. People on treatment can easily get upset and worried, and it's best to be careful to help get them through treatment with as positive an attitude as possible.
Bob

[Moniker]

Jim, It may very well be true that Pegasys dose reduction during the first 12 weeks is a very bad idea, and that people should try to take 100% of their meds. My heptologist recommended Pegasys dose reduction, and I had confidence in my doctor. I followed my doctor's orders and it seems to have worked out well for me so far. My doctor is a heptologist at Yale New Haven Hospital, and also at my VA Hospital in West Haven, CT. I don't have a lot of money to go to multiple heptologists. I did try to get a second opinion but couldn't get past the receptionist because I don't have insurance.

Jim, you give great information and I always read it with great interest. I just wanted you to know that sometimes, without intending to, you have gotten me very upset. I still think that if you refer to recent studies about some topic, you should be able to send the study to someone who really wants the information.

Bob

[jmjm530]

Not surprisingly I totally disagree with your assessment what transpired as well as your conclusion.  And as I've stated before, the threads you posted previously are there for anyone interested to read and come to their own conclusions. I was just trying to help in the best way I was able. I wish you the very best in treatment and beyond.

-- Jim

[jmjm530]

Just read your second post. I know you didn't mean it to come off that way, but for someone just coming into this discussion it might seem that I somehow told you not to follow your doctor's orders, or even second-guessed your doctor, or was somehow meddling in your treatment. I did none of those things.

It is important to note that the post that upset you regarding reduced meds and SVR was NOT addressed to you at all, but to TimeDog and was posted AFTER you had already reduced your meds.

You then started putting words in my mouth in C16 where you state: "Jim, are you saying that my chances for SVR are not so good because my doctor tried to get my WBC up without Neupogen."

Well, I never said that and spent I don't know how many posts trying to tell you that I didn't say that and that you'll probably be OK since you did adhere to the 80//80/80 rule and you did become non-detectible at week 12.

As to upsetting you while you were on meds, I'm truly sorry and I know how that can be but keep in mind that I was also treating at the same time and even though I'm off treatment now, I'm still under a great deal of stress with post treatment sides.


-- Jim

[Myown]

I think you are all being more than helpful to me and all the other newbies. I feel bad that someone left the board, but I don't feel he has an ego problem (from readin his posts) that would keep him from comming back after he balances his time a little more.

I think everyone has mentioned on numerous occasions that there aren't any doctors here and the posts are opinions and personal experiences.If you wondering what the newbies are thinking of all this, I can only speak for myself... One thing that was becoming scary to me a little or alot at times, was hearing about all the negative experiences and fewer positive ones. Don't get me wrong, if someone is experiencing problems, I don't think they should suffer in silence just because they might scare a newbie, such as myself, but for a while it seemed, there were more scary posts than non-scary. But if that's what was happening,you can't make up some good stories just to soothe the newbies nerves. Plus, being a newbie, I think the sad stuff sticks to the brain more than the happy stuff, at least to my little sticky brain.

I've never been a part of a support group before, just heard about some and really.. when you come down to it, the groups are there for a shoulder to cry on, but also to strengthen one another, which I feel this group has achieved both.

I thank you all for all the info. The articles from the websites that people have posted, such as Jim, have been very informative.

As my journey continues, I am comforted in knowing I have a whole bunch of shoulders to cry on and a whole bunch of people to strengthen and encourage  me to fight the good fight of faith.Can't talk to anyone else about this, besides husband and family, but they don't have this disease(thank God)and though they are there for me, I need to stay connected to people going through the same thing.

Thanks for being there. Hope you guys are patient with me if the meds cause me to get crazed, hope not. Thanks for listening.

[jmjm530]

Nicely written thoughts. I think we can all learn a lot from here but also take a lesson from Tele, who left today so he could balance out his life a little more.

Both aspects are important, because as you suggest, no one really can relate to what we're going through better than the ones going through it. But on the other hand, it's possible to get so caught up in our illness that we lose touch with friends, family and work.

Re post tx side effects, I'm glad you view both the postive and negative posts in  the context of individual anecdotal experiences that differ as much as we differ as individuals.

Just about everyone here is stressed out because of treatment, thinking about treatment or recovering from treatment. That sometimes makes it difficult to communicate in the manner we would like but hopefully it doesn't keep us from trying.

Hope treatment is kind to you and there are a lot of good folks here that will lend you their shoulder when needed.

All the best.

-- Jim

[beamishboy]

Nothing i say should be considered as Medical advice.. though i doubt anyone takes my posts seriously.....i first visited this site before starting trx...i learned a lot just listening & exploring the archives-equally scared,amused,amazed and impressed....it is what it is.....thats why i keep coming back.

[Myown]

Thanks alot Jim,
You're a very nice guy.

[jmjm530]

Sorry I must have missed your post in the shuffle.

I caught some of the theads regarding hurt feelings lately, but probably missed the thread you are referring to. But in general, I wouldn't take any responsiblity on yourself for stirring the post-tx side effect pot, because it's one of those hot and controversial topics that will always be hot and controversial -- especially in a discussion group where pre-treament folks, folks treating and post treatment folks all post in the same place. When I was first treating, these posts were very disturbing so I can understand that point of view. However, I also wish I had read more of these experiences before I treated.

All the best.

-- Jim

[Moniker]

Jim, you write: "As to upsetting you while you were on meds, I'm truly sorry and I know how that can be but keep in mind that I was also treating at the same time and even though I'm off treatment now, I'm still under a great deal of stress with post treatment sides."

I'm off treatment now too. I've been off tx for about five and a half weeks now. About a week ago, after meeting with my doctor, I decided to start cutting back on my Zoloft. I had started Zoloft when I became depressed - a few weeks into my treatment. I never needed an antidepressant before treatment, so I want to get off the Zoloft now that I've completed treatment. For a week now, I've been taking half dose of Zoloft. I think I'm detoxing from it, and this has me stressed. Perhaps this is why I seem to be arguing too much about things. Sorry; I'll take a little break from hep c - it's a lovely summer evening, a little too hot and humid but it's supposed to be hot and humid in July. I'll go out, have an iced green tea, and then go for a walk with my dog and a friend.

I want to enjoy post tx. No more from me arguments from for at least today. All the best to you.
Bob

[jmjm530]

Thanks for the comments. I've also been stressed more than usual lately because of some bothersome post treatment skin problems and hopefully I'm not taking it out on you or anyone else. I am somewhat defensive by nature and I'm sure the stress is not helping things in that regard. I apologize if my tone was inappropriate at times. Post treatment among other things is a real detoxification process that brings a lot to the surface.

Regardng the Zoloft, all the best in staging down. Frankly, if things don't get beter with me soon I may have to start taking something like it :)

Enjoy the rest of the day and what I have every reason to believe will be your upcoming SVR.  

-- Jim

[jmjm530]

I'd also like to add that if I caused you any worry way back then because of any of my posts I am truly sorry. It was inadvertent as my only intent was to help. It's so easy for things to get misconstrued on the internet without face to face contact and the opportunity for a truly interactive exchange.

[sfbaygirl]

Grandoak; I have never thought you were rude or disrespectful. In fact I saw you put up with some stuff I would not have.

Sorry if I caused people to feel quilty for having debates or expressing their opinions. We can all express our opinions even if we disagree with each other. I think the problems start when people get mean, call names and are disrespectful. You aren't.

Geez, sorry if I caused anyone to doubt their intentions. People who are mean know it. I sure would hope! I don't think if each one of us is respectful and polite even when there are disagreements, I don't see any problems with it. Most of us are respectful, even if we are in a heated argument.

I am leaving in an hour for Jamacia mon. Bone pain and all. Hope you all stay cool and I will talk to you soon!

[GrandOak]

Jim: But in general, I wouldn't take any responsiblity on yourself for stirring the post-tx side effect pot, because it's one of those hot and controversial topics that will always be hot and controversial ...

Actually, I believe this thread spawned from the original one where someone chastised the group for being to whiney and scaring the bejeebes out of pre-tx folks with all the discussions on sx's which are purely anecdotal and as such invalid to make any claims upon their basis alone (which I found that kind of odd, because is not the results reported by all doctors and clinical studies based for the most part upon the anecdotal responses received from patients? I'v even heard one doc testify that they had no idea what sx's so many go through are really like until they had to actually go through the tx themselves).

I then seemed to be the focus of the flame when I commented that those of us who experience few sx's appear to be in the minority when it comes to the overall population of folks who go into tx.  It seemed to me to snowball from there to the point that when I got the results from last weeks labs about my VL increasing 1.1 mill at wk 25 I was hesitant to even turn to the group out of concern that I might yet receive another flame for scaring people with the fact that tx is not a guarantee of SVR by any means.

Granted there seems to be extenuating circumstances for me, such as a reduce dose of RBN for nearly 20 of the 25 wks, which may be contributing factors to my increase. But the fact of the mater is that since my Epoetin tx seems to be staving of the severe anemia, about the only real sx I have had to really struglgle with (not mentioning the frustrations, disappoinments, and occasional bouts of depression w/o AD's) to the point that I've returned to original RBN dosage and shooting to go higher, it sounds like I'm looking at yet another 72 wks of tx.  But hey, I figure I'm still down 70 mill from my baseline VL and at least I'm responding which is more encouraging than those folks I communicate with who either did not respond or had to stop because the sx's were to severe.

As for post-tx, heck I'm still praying that someday I might reach the point where I can even consider entering into those discussions.

[jmjm530]

It's unfortunate but this place can be a minefield at times and I've stepped on my share :) Someone mentioned posting on certain topics is "like walking on eggshells" and I can't agree more. I make my living as a writer and sometimes have the hardest time framing answers so my head doesn't get popped off :) "Have a thick skin" many advise, but hey, for some of us on high doses of riba, etc,  that's easier said than done. In any event, I hope that incident doesn't keep you from posting and getting the answers you want. Believe it or not, I do see a new sense of tolerance at MH (it was worse a year ago) and hopefully it will still get even better. The treatment experience has got so many of us all wound up that it's really important to be as gentle as possible even with the ones we disagree with. Hope your new treatment approach works out, but definitely do start a thread and your specs, treatment history, etc, and any questions you still have if you think the group can offer something.

All the best.

-- Jim

[DoubleDose]

Democracy in action!!!  I love it!!!

The fact that we could work our way through this thread with so little animosity, and everyone able to speak their mind, demonstrates what a great resource this forum is, and what an exceptional bunch of people populate it.  Under often very difficult circumstances we all nonetheless seem to manage pretty well.  I think this forum gets better over time.

Best to all of you!

DoubleDose