My late Mom used to always say,"if you don't have something good to say about someone, don't say anything at all."

I got on here feeling a little under the weather today, and after reading some posts I am feeling totally depressed. I was sad to see that people I have come to respect on this forum are on opposing sides of a discussion and have gone from just giving their opinion to attacking the people with a different opinion. Opinions are like a*******, everybody has one. We are on here for encouragement and to learn all we can about the experiences of people who have gone down the road we are getting ready to go down. When a person is attacked for their opinion they aren't the only one hurt... everybody who reads that attack is hurt too. Please try to keep in mind that depression is a sx that lots of people on here are dealing with, and negativity doesn't help anybody.

We need wisdom, shared experiences, and POSITIVE INPUT.

That's just my 2 cents worth anyhow.

[nygirl7]

I'm sorry that you feel this way.  Most of us old timers who have been around for years are used to spirited discussion as a part of the norm.  We've had some full out fights over the years and yet managed to remain friends (at least friendly - even with those we aren't fond of when they have needed it) while disagreeing. Everybody on the forum wants everybody to beat this disease no matter what the relationship might appear on the outside.  You'd do well to remember THAT not a few words during an argument as that is the true reason we are still here.  The forum wasn't nearly so moderated at that time and things would get quite heated but like I said we ALL wanted EVERYONE to be CURED.

That is the nature of a discussion forum, people have passionate opinions or they would not be here in the first place. It is all about opinions, 100% because everybody on here is solely guided by their belief system and experiences personally.  Even when dealing with statistics and studies it's the opinion of one person whether the odds are worth the sides for example, or not. It's ALL opinions.

At times treatment can be very difficult and the old adage of "if you don't like the post don't read it" can be very effective.  You can't please 100% of the people all of the time and those of us who treated extensively and are cured do tend to be full on believers of the miracle drugs that cured us.  We don't want to see anyone wait themself into end stage liver disease.  Have you ever seen someone with that? You don't want to if you haven't.

Especially for those of us who HAVE watched people die in end stage liver disease......this is a battle we are not willing to compromise on, ever, as we have seen how truly horrific it can be.

So that is where the passion comes from - it's not - not support, if anything it truly IS people wanting to support the person into health and well being so therefore it's about as positive as you can possibly get.  To sit quietly and remain lukewarm would be as negative a thing as you can possibly do. fighting for someones life well that's as positive and supportive a thing as anyone can do for a friend in their lifetime.

Good luck.

[Trinity4]

Agree totally with NYgirl.  Peoples perception of what is debate and what is an attack are different.  I saw no attacks of late and I welcome opposing viewpoints.

This is not a disease you paint with pretty pastels.  It's ugly and all aspects of a posters viewpoint are subject to scrutiny because this is not a one size fits all disease and people are going to hear things they don't want to hear.  

Trinity

[susan400]

Diane,

I personally, can't just say a bunch of positive things about how treatment was so great and how it cleared me of the virus.  Yes, I've done a lot of treatment and I would/will treat again, given the opportunity. However, it's not all a bed of roses to where everybody can take the same treatment and all of us be cured with minimal side effects.  That's unrealistic.  People need to know the truth that sometimes treatment is rough and there are nasty side effects..., sometimes.  And sometimes people do get depressed and irritable and cranky and need a safe place to unload about how they are disappointed that they didn't get SVR, etc.  I can't just sit back and allow everybody to think that if you go into treatment with either SOC or the STAT-C drugs when they become available, or a clinical trial..., that they will definitely, unequivically be cured.  That's not the truth in a number of people's cases.  While there is quite a bit of hope that one of these treatments may, just, in fact, provide that cure.  It is unkind to not show both sides of the coin because it's much worse to be devastated if it doesn't turn out how you hoped it would if you don't know the full picture going into it.  It's like thinking "I am going to find a pot of gold at the end of the rainbow..., believing that to be true because nobody ever told you that you wouldn't find it and then, you get to the end of that rainbow and there's no pot of gold".  That's what happens to people if they go into treatment thinking that they will without a doubt be cured, first treatment.  It doesn't always work that way for a large amount of people.  If that's negative then, I guess I'm negative.  I tend to think that it's more realistic than negative.  Any of my real friends know that I am always a person who goes into treatments with a hopeful attitude, but with a very realistic attitude as well.  I've done it 10 times and been disappointed 10 times.   Susan400

[charm27]

I totally understand how you feel. WHen I was treating and use to come on the forum all the time there were times and many I was depressed. Tx made me very stressed and seeing people here bicker made it worse. However I feel you have to take it for what it is. Many people have so much compassion and others wont even wish another SVR.
I like to believe there are more good people than bad in this world.

Sometimes a few bad apples does ruin it for awhile anyway...
Just keep on believing in yourself and to heck with the others.
If someone doesnt add GOOD to your life- Kick em to the curb!
Most of all be well and take care of YOU!
Charm

[mj6000]

I see threads that turn into a free-for-all. It must make the original poster feel terrible. People sometimes make fun of the issue,mainly alternative treatment options some folks have no option but to try.I don't understand that. I would imagine it causes some to quit coming to this site. It's best if someone (including me) has issue with another person that they should use the "message" feature to debate their issues,especially if it's off topic.I'm not perfect,I've taken issue off topic and should have done it in messages. We should always keep in mind the person who started the thread...Your 2 cents were well spent Diane.

[Diane12855]

I'm glad that you understood where I was coming from. I imagine I was more sensitive this morning than usual, and may have not worded my post as well as I should have.

I know there are a lot of bad things about what we are all going through. I wouldn't want anybody to sugar coat it and then have people finding out it is much worse than they expected... that would be very cruel. My concern was what appeared to be attacking the person behind the statements. I would not read those posts except for the fact that often the answers provide great information that I need. Like someone said above... I'll just not read posts on days when I'm overly sensitive and then I won't offend anybody.

Be well all......... :0)

[GSDgirl]

Hi, there are many. many great discussions on the board.  But when someone states something as fact it is in their best interest to post a link to a study, that way it shows that what they are saying is not just "their" thoughts.  If someone is wrong it is not unusual for others to chime in with either their own experience or a study to the contrary.  This way the new people coming on and reading get a broader idea.  Plus as I am sure you know, on forums like this one can not take everything at face value, always do independant reaearch!!  I hope you keep reading a lot on here but remember to "Read with your eyes wide open"

Denise

[susan400]

Well said!  Susan400

[Diane12855]

I appreciate your point. I have seen that there is a vast difference between a cure for the virus... which is the only way to prevent more damage to the liver, and herbs that cleanse the liver. I may be wrong but I look at it like a skinned knee (kinda)... you want to clean it up, but the antibiotic ointment is what's going to kill the germs and prevent infection, the soap and water are just going to clear the way for the ointment to work better. I know this is an extremely simplified example... but I think it applies.

[nygirl7]

Just be careful you know what is in this 'liver cleanse' as most of it is not legitmate and can even do more damage than good.  In fact most of the ads you see on the internet are only out to get your money. Sadly, there is a huge market that takes advantage of people who are desperate to be cured of disease and they have NO qualms about taking our money.  At all.  Sick. Just sick but true.

Remember if it seems to good to be true generally, it is.

[chuckles333]

I have come to this forum numerous times to look for support, ask for information from people more knowledgeable than myself, help to inform others in matters I might know something about and attempt to give others support if they are troubled or unsure in matters I feel I can relate to. I have always browsed the newsgroups and found them quite useful. When I looked for info, the first place I turned to was the alt.support.hepatitis-c newsgroup. I found that place to be full of people who would jump on every opportunity to degrade and belittle their fellow users. It didn't take long before I became totally disgusted with those people and that place. Then I found this place. What a refreshing change. Sure people would become passionate from time to time about their view-points but mostly it was because they care about their fellow users and they go to length to make a point they believe to be valid. People are civilized here and rarely resort to name-calling or insulting comments. I really, really like this place and I'm sorry if your experience here was less than you expected. Give it a chance and I'm sure you'll come to love us all. How can you not. ;o)

[mj6000]

I guess I haven't been on this forum long enough to develop the passion against the alternative options. I really don't think they are worth anything myself either but I just hate to think of the people out there who are searching for hope.

[Rockerforlife]

I think most of the people who get thier feathers ruffled about the heath topics and how they "claim" to help, is because they care and woory that the natual stuff may cause more harm than good...but i find if you do a lot of reseach and you have the natural ways work for you ,well,thats all is needed,if some one dont agree...i just move on,  i  dont see too many posts saying natural foods and herbs can cure C...but its all a matter of experience and opinion..heated debates are healthy too...good way too blow of some steam if needed

There is a place you can touch a woman that will drive her crazy. Her heart. - Melanie Griffith

[nygirl7]

I just hate to think of the people out there who are searching for hope. "

We all do too but want to make sure in their desperation they don't follow the easiest path of resistance thinking it is necessarily the smartest of moves when usually its not.

If treatment wasn't necessary would any of us have done it? Oh H3ll no I can tell you that would be the last thing I'd want to ever do again! ;)  It's just such a shame that there are snake oil salesmen as we call them out there so that anyone even has to try to protect anybody.  I totally believe in 'better safe than sorry' now in my life (should have worried about it as much when I was a kid and maybe I wouldn't have ended up with this disease to begin with!)

[jdwithhcv]

Some of the passion comes from knowing that there are many opportunists in the world who take advantage of desperate sick people.  As NYGirl says, we would not suffer through this miserably aggressive treatment if there were any easier way to clear HCV.  But that is what it takes to get rid of this disease for good.

Certainly people with HCV should adopt a liver-healthy lifestyle, and there are diets and supplements that will support liver health.  But when it comes to treatment, there is only one that has been proven effective.  We don't want that message to ever get lost.

[Emily_MHModerator]

Diane12855 started this thread to ask people to maybe be a little nicer.  You all are entitled to think what you want about that, but this thread has veered off topic and is now debating (yet again) the SOC vs alternatives.

Let's stick to the topic, please.

Emily

[Trinity4]

Thank you for summing it up in a single paragraph.

Trinity

[nygirl7]

I thought the conversation was going pretty well and people were understanding the why's of the appearance of being 'nice' or 'not' and that was the intention all along.

[Lady Lauri]

Hi all! popping by, sticking my 2cents and nose in :)

Hi Diane, haven't 'met' you. I was a regular (lived here!) thru dx, bx and tx. I still pop in, stay in contact with several and this site brought many good things to me, my life.

In the past couple yrs, I have seen it go thru too much drama, siding up, bs, trouble making and so on. None of that belongs here, but it happens. The worst side to all that, is how it has changed this site. A LOT! We used to have debates, great threads, many disagreeing but with respect. Then someone would get nasty, go too far and so on. Now MH monitors everything to the point some good threads get trashed. In the past, 'we' corrected the threads, cleared up hurt feelings, 'scolded' ourselves. Now the threads just get deleted, and all the animosity remains, and often carries on to another thread somewhere. In the past, often 'hashing it out' worked out well!  With so many different personalities, disagreeing is inevitable. How each person handles that is the make or break in it all, and too often, it's been the 'break'.  MH has to 'time out' us too often....how old are we now??? They feel they do, because of past threads, some pushing complaint button (as a hobby?), etc. It's in everyone's best interest to be careful HOW you disagree, respond, react. I learned something long ago, when angry and you write an e-mail, reply, whatever....always wait 24 hours to hit SEND. I have a ton in my draft mail, never sent! Think before we speak, plain and simple.

As for this swayed to tx and alternative treatments.....
Anyone facing this ordeal, tx needs the truth, all sides, facts. Had I not been here, I'd have stopped tx early in. The Dr.s, nurses....none of them told me what I was in for. Here I got facts, from people that DID these drugs, not read about them. Sugar coating anything with this tx is not good for anyone. Had they all, I'd have thought I was a rare case and dying from the stuff and quit. How anyone will react to these drugs is a total roll of the dice, but here they will know what to expect, the worst and the best it can be.
Alternative tx's....I promote milk thistle, ONLY in assisting the livers functions, not in a cure all, and it's not for all (example: Susan has allergies, can't). I am drug phobic, for me to have decided to do these drugs, means I researched my fingers off in all other possibilities first. The only PROVEN tx is these drugs. It is upsetting that companies and people do prey on the sick and desperate. Many new dx cases start searching for cures, here we do make them aware of this.

Anyhoooo, writing while talking, so I think I'm done now :)
Even in not here often anymore, I see the huge change when I do stop by. It saddens me honestly. BUT, it is still a great place and hopefully will work it's way back to 'they way we were' ;)

Best to you Diane, and agree on what you mother said!

LL

[Trish77]

"The only PROVEN tx is these drugs. It is upsetting that companies and people do prey on the sick and desperate. Many new dx cases start searching for cures, here we do make them aware of this."

The thing is, not everybody is looking for a cure.  There's a post on the other side today, as a case in point, from someone who can't take INF and Riba because it makes them cough violently and uncontrollably.  Wants to know what he CAN take.  There are people with kidney disease who are not able to do treatment.  I can go on and on and on.  So if we're not going to sugar coat and we're going to get ALL the truth out there, let's get it out there for ALL the people, not just people who can do treatment.  We discuss the pros and cons of drug therapies and new drugs in clinical trials, we also need to be able to discuss the alternative approaches when the core SOC treatments are not an option.   The HCV journey is different for everyone, we all have different life journeys as well so only allowing discussion that fits into a narrow little box will leave out all the people who don't fit into that little box.  And there are plenty of them.

Not very much about this disease is one-size-fits-all so some open-mindedness to the differing situation of others is critical.  

[orphanedhawk]

My mother used that same phrase. I say she raised me on cliche's.

One big reason this forum gets so difficult is many of the participants are on medications that effect our emotions. I was a wreck while doing the treatment.
And I was so grateful to be able to come here and vent and to know there were others like me here.
Now, I try to be clear, and helpful without the emotional tirade. But I empathize because I remember how I felt.

And Emily, I so wish medhelp would just stop playing Pollyanna. These are sick people and you guys should just stay out of it. We don't need a referee.
My opinion only, of course.

[Lady Lauri]

The only PROVEN tx is these drugs...........
The point of the comment is the so called 'cures' advertised, targeting those looking for one. It pertains to just that...'cure'. The only tx tested, approved and 'cures' Hep C.


"we also need to be able to discuss the alternative approaches when the core SOC treatments are not an option "
The comment "I promote milk thistle",etc. was my example and would be the area you are stressing,which is to help ones health, alternative ways to deal with this disease, effects of. Therefore, that is discussing other options for ones health, without SOC, but not claiming it as a cure.


NYgirl..."Just be careful you know what is in this 'liver cleanse' as most of it is not legitimate and can even do more damage than good.  In fact most of the ads you see on the internet are only out to get your money."
Which is very true.... "Many new dx cases start searching for cures, here we do make them aware of this." (the 'cure' scams, versus products that can help ones health with Hep C)

"Wants to know what he CAN take.  There are people with kidney disease who are not able to do treatment".......
See paragraph 2 and 3. Many alternative health options are discussed here, always have been.  I see no 'narrow little box' ? Of course many options are out there for better health, assisting the liver. Just beware of ones claiming 'cure' was my point.  

[Trish77]

You're being a little defensive.  While I pulled a comment from your post to quote in my own post, it was mostly to help me illustrate my point, not to argue with your point of view.   Yes, yes, yes ... we have to be careful that people are not promoting products as cures here.  We also have to be careful we don't shut down legitimate discussion in our paranoia and narrowmindedness.  There are also legitimate products that could be helpful to one's health when SOC is not an option for whatever reason.  Not everybody is looking for a cure, they're looking to prolong life for all the reasons I keep stating over and over.  Not everybody is able to do SOC and we need to be able to welcome and discuss and support ALL people with HCV, not just those who can do and are doing treatment.  There's a whole number of people who can't.  And frankly, if someone chooses not to do treatment, they should not be browbeaten, insulted or harrassed into it either or told they are a coward for not doing SOC.  How someone manages their HCV is a whole life decision that only that person can make.  What's important is that they have as much information as possible to make that decision and they should be able to ask the kinds of questions that are important to them.  Those that have to manage WITH their HCV should be able to share strategies openly without harrassment.  

As for you suggesting that alternative health options get discussed here, oh...they get discussed here  and they have been among the most contentious discussions we've had here of late because of those little boxes you don't see but I see plenty of.  Try reading back on some threads ... the ones that didn't get pulled.

[susan400]

I thought the whole point of this thread was that Diane was saddened by people attacking one another and the lack of encouragement and wanting some positive input.  However, in my opinion, when certain people get on here and feel the need to lecture about their point of view then, it aggravates people with the opposing point of view.  My opinion, short and to the point, w/o a lecture.  Susan400

[Trinity4]

:o)

[nygirl7]

Round and round :O :O :O

[Lady Lauri]

Trish, I see nothing above that was dissuading anyone from looking for  alternative methods to help their health, nor warranting your post that myself or anyone was. (in THIS thread) Only to beware of them. When using someones words to post your opinion, it usually warrants a response from that person. We'll agree to disagree and stick with the purpose of Dianes original post. I will agree that no one should tell anyone how to manage their own health, in any area.

Susan, your right, TY. And your post way above, was right also.
Nygirl, your making me dizzy.

Best to all, have a great day

[merryBe]

we need wisdom and support...well said.

one guys wisdom is another guys folly...also true...

sometimes folks who care disagree, sometimes we forget that the one we are trying to help may have her head spinning Linda Blair style by the time we are thru helping....lol...argh !  ; (

I think one thing helped me Diane and that was knowing how vunerable I was, especially during early treatment phases...very edgey....and I could only take the forum in small doses not because the discussions were rancourous but because they were intense and sometimes information overload...

and when we are riding the roller coaster it can be minute to minute....I was one who needed antidepressants....my doc didn't want to give them until I insisted....the forum warned me most folks would need them...and they were right...but the first 4 months were brutal...

I simpathize with you, but would also say, take regular breaks...get a lot of funny movies, read jokes...watch old movies, read the books you meant to read...etc etc...
because there's more to life than just finding out everything there is to know about this yukky disease.  I found that if I did not spend most of my time focusing on light weight stuff I could get very sad very fast...and I do mean VERY.
keep your chin up....we are all rooting for you!!!!
mb

[Diane12855]

Thanks for the advice and encouragement. I'll keep it in mind.

To everyone else....(:-)..... Susan400 hit the nail right on the head... I was heard and understood, and I thank you for that.

Life goes on.... hope everyone has the best day possible

And I hope my meds show up sometime in the near future  grrrrrrrrrrr!!!!! How long does it take anyhow?

Sorry... changed topic

Over and out

[copyman]

sorry this forum made you depressed. actually when I was treating this forum was a big help for me even when I was depressed.

I have been to all the internet forums and have found MH to be the best. I like the straight forward infomation you get here. I have been in some of the heated debates (mostly about FALSE alternatives) here because I didn't want the wrong information to get out to newbies.

sounds like you would get more out of a forum called janis & friends. it is a forum where the members will hold your hand and sweet talk you. never a harsh word is spoken. it is also a forum you can learn from but mostly gentle support.

good luck

[mj6000]

I still understand what you mean Diane.

[mj6000]

There is a right way and a wrong way to hold a debate or make comments.

[nygirl7]

And I hope my meds show up sometime in the near future  grrrrrrrrrrr!!!!! How long does it take anyhow? "

Make sure you always order your future meds while you have a shot left in the fridge.  Sometimes things come up and the pharmacy can shock you when they don't have them or they don't get sent to your house the day you need them or the redipen thing can jam.......lots of problems we've seen over the years.

Don't wait until you've used the last one up or you could end up in big trouble.  Better safe than sorry is definitely worth taking here.

(When they were mailed to my house they came overnight in a freezer bag (until I had them not sending me the premixed but instead the tablet and saline so Ididn't have to store them in the fridge and worry about power outages or travel (wish I could have!))  The pharmacy was good and would get them over night IF it wasn't on a Friday but if it was a Friday they would not get them in until Monday........

I'm not sure where you are getting yours so I can't be very specific but once they are approved and ordered they should come right away. Mine always did (except the Friday I learned about ordering in advance oy that was bad but the pharmacy helped me get a shot for that night.....it was  scary I never made that mistake again).

[IAmTheWalrus]

Diane,

Bickering and attacks are disheartening, for sure. I have probably been guilty of being a little derisive in some comments pertaining to alternative treatments. I just wanted to make sure that someone wasn't just hearing one side (often without facts/data) of these treatments. In some cases I couldn't live with myself if I didn't pipe up and put in my own two cents. I think some others feel the same onus.

The end result, or at least objective of discussion, should be to find truth and expose falsehood. When an argument gets exposed as false it should not be taken personal. It is all part of the learning experience.

This is not just a case of philosophical difference, but it is a matter of grave concern where a person's health or life could hang in the balance, so arriving at some facts and truth is essential. Everyone has an opinion. The objective should be to find the ones that the evidence and facts support.

I have found a lot of wisdom and support here from so many folks that the annoying posts and arguments are not of great significance overall. I hope you will find the same.

Brent