Should forum members offer diagnosis?

I have been reading this forum since its inception and posting for the last year or so.  During that time, I have observed periods of time when there are posters offering a diagnosis to people that are new to the forum.  This is not a black and white issue, since the behavior can range from implication to direct advice.

Personally, I feel strongly that people should never present answers to questions as if we are doctors.  Even if we were doctors, we do not have patients if front of us nor are we reading the test results directly.

I think we should restrict our postings to providing information about standards of care, definitions of terms, emotional support and a general recommendation that all new members seek the best and most informed hepatologist that they can find.

I do not mean this as a direct criticism of anyone.  I hope to start a thread where people can define a general philosophical guideline.

My own opinions are not necessarily correct although I would be amazed if the were not :).

Eric

[susan400]

Hi there, Eric.   I agree with you for the most part.  I see nothing wrong with offering up suggestions on what have worked for us with our 'comfort of care' measures, but I definitely agree that none of us need to be telling someone else how to treat.  I've made that mistake before and I regretted it afterwards.  Sometimes it's VERY hard to bite your tongue (or silence your fingers), when you hear about someone doing something that you've learned from past experience - might keep them from being able to clear.  But, I'm going to try very hard to just keep my mouth shut and let them deal with their own doctors.  Things like, 'using lotions like Gold Bond, Eucerin, etc.' are harmless and I think are helpful.  Things like drinking a lot of water, helpful.  Can you believe that on my first 2 treatments, my doctors/nurses said nothing about drinking a lot of water to me and said nothing about taking Riba with something 'fatty food', not one word was said to me.  As far as taking Procrit for anemia, well I never had that offered to me until treatment no. #7 or #8??   Gosh, I've done this too many times, even I can't keep track of the number now.  Anyhow, I agree with you.  I hope you are doing well.

Susan

[Marcia2202]

I agree with you that one should never offer diagnosis or the like. I think that often it is more a question of formulating oneself.  One can give exactly the same answers in different ways and I don't see anything wrong in answers to questions according to one's own experiences, stressing that it is one's own experience and that people should check up with their doctors.

I agree that any advise should not be given lightly, as one could be playing with someones life.

I think this is a good thread you started.

Marcia

[comeagain]

Iv`e noticed that some people  are teeling you stuff like obey doctors order, do what your doctors said etc which often give me a bad taste.

Because their is no humility what so ever in the adwises, if they wanna thrust the doctor thats okey,but please dont say that everyone else must do it.

I think that one very big reason why this site has been such a accet to many people is that some has not seetled with what the doc has told them and instead hade done some research for them selfs.

And BTW doesn`t this site provide with information before joining, that this forum is not proffesional.
So if you wanna take advices from someone without critisism and checking up, you in away have only your self to blame.

Ok some people can sound very convincing and act as if they were authorities and know it all.
Yes theres a potentiall risk with them, but in my opnion, such as the forum is right now i don´t really consider it a problem.

ca

[jools57]

Offering a diagnosis online sounds dangerous to me. Offering advice on how we have handled different side effects that pop up, sounds just like that, advice. Everyone should be working with their Dr.s, and arming themselves with knowledge about their disease and treatment options. This is no longer a one size fits all SOC. The more I know, the better questions I can ask. I was of the generation where we "question authority"
I would definitely consult my Dr. first, before taking a "diagnosis" online. We need to be responsible.

[nygirl7]

I don't think anybody really offers a "diagnosis" so to speak.............just reasonble guesses when someone asks a question.  Usually it's always followed with "Go to a Doctor immediately" or "Ask your doctor blah blah blah".

I don't really ever see anybody stating anything factual.

Personally - it's hard NOT to offer an opinion to a new person coming in looking for answers. You can't say "well gee sorry to hear that but ..." when someone is talking about some very specific concerns.

I don't know - maybe it'a  catch 22 situation.  You are damned if you do and damned if you don't.  It would be nice if people were just in here asking basic questions about how to make treatment more tolerable but lately.....it seems as if people are coming in with serious conditions and need to be informed enough to make them realize that they MUST go to a doctor.  The danger is too great to just let it go.

[frijole]

I  agree with you on some points, but not totally.  I agree that  we are not capable of making diagnoses, and don't have the proper tools or medical records to do so.  

However  a lot of what happens here is that other methods of treatment besides SOC (standard of care) are suggested.  We members do go out of the box to recommend, for example, 72 weeks of treatment when someone is not clear at week 12  or suggest Procrit instead of letting the doctor reduce doses when the hemoglobin drops.  . These are important things to present.  I think sharing our experiences is a very valuable tool

For many of us, there are no local hepatologists.  Our GI Docs are not informed and, frankly, don't care to be informed.  They take us as patiens as an obligation, not because they care.    I learned more by far on the internet, and particularly in this forum, than I did at the doctor's office.  

I have been to some pretty sappy hepatitis forums.  You can have them.  Give me facts, not just support.  I believe it is up to each of us to make our own decisions and not take anyone's post for fact without doing more research.  I think it is important to be clear that what we post is either from personal experience or from something we have read, and give the source, if possible.  I think we should be clear that we are not doctors here -- and you are right, in that some new posters think this is a doctor-run forum.

frijole

[Deb_c430]

Agree with a lot of this, I think there have been folks who think they are smarter than Docs,  but it is rare.  

Helping them understand their sides, understanding the  labs and explaining in a simple is not harmful.

As Susan said many times after treating so often we  know that procrit neipogen are pretty standard, Not to be scared.

I also think a lot of GIs can keep up with new stuff,  so if you can pass something on to them, let them research it, thats good also.

But seriously my friend Andiamo, you are right also, this disease is not called the silent killer for nought,  So opions ok, cut in stone, advice, No way.  

I for one do not want that responsibilty,

[Andiamo1]

I agree with everything you said.

[Andiamo1]

I should have added that I agree with most of what almost everyone has said.

[Deb_c430]

lol i am surprised if mine even made sense! I leave out important words and spelling?

pppfttt

Deb

[comeagain]

Love you deb, took shot 21, three ours ago feel so sloow in my brain you made me laugh.
We are connected in an nonintullectual liberating kind of a way.

[medicmommy]

There have been a number of occasions that people on these forums who have "been there, done that" often have more sound advice than their doctors offer...
I agree that all who visit should take advice with a dose of common sense...I have a pretty good medical knowledge base, but I learn something new nearly every time I come on here...It seems the more I learn, the less I really know...so I for one, am reluctant to diagnose anything...(I'm up for offering possibilities, however!)
This is an excellent place for support (something Drs can only give out in micro amounts) and for those little tidbits of advice that make getting through treatment a little more bearable...also a good place for those who are wondering what is "normal" and when they should pester their Dr...And for letting them know when their Dr is "dropping the ball"...                                               ~Melinda

[mikesimon]

I think that any advice should be accompanied by a disclaimer - "I am not a doctor" if not by the poster then by another member soon after the post.
Generally, this place polices itself very well with regard to false or inaccurate information. Very little gets by the members here so I don't think there is a significant risk of someone relying on misinformation. Anytime people congregate the risk for bad advice exists because people tend to talk to one another.
The truth is - unfortunately - a lot of the member here know as much and sometimes more than the average treating physician. Hopefully it all gets washed out and members benefit from other members' experience and knowledge.
I don't think it's really a big deal. We just have to continue to police ourselves.
Mike

[meki]

OKies - let me know if I step out of line tho --- K?

I tell what I think --- and sometimes I'm a little flighty about it --- jotting it out as fast as my brain can go.

So if I step out of line - someone poke me please?

Hugs to y'all.

Meki

[ladybug52]

I agree with you totally.

I have another philosophical guideline I'd like to talk about.

It's hard not to tell others what to do, and I think, sometimes, we feel as if we know so much and have gained so much from others, that we feel entitled to share our beliefs with others.

I decided to quit tx after 16 weeks. A lot of well meaning wonderful people told me not to stop. My choice was based on my own personal decision, and I respect and admire all those who said don't quit! However, it's about support, not how we treat or how long we treat.
There are a some who choose to continue to treat, even though they didn't reach und by week 24. A lot of people have commented that they are wasting their time. Again, it's about support, not how we treat or how long we treat.
Another person who quit after 48 weeks, and did not maintain und at the 3 month post pcr, was told "you should have never stopped at week 48" He was going on his drs. advice and it was sad to watch everyone tell him what he should have done, after the fact.
I am not trying to criticize anyone. I know I was able to get through 16 weeks, ONLY, because I had the wonderful people here to turn to. I know that everyone who wanted me to continue was sincere in their belief that they were helping me.
I'm guilty of trying to diagnose over the internet, things I shouldn't even comment about. I'm glad that most people don't listen to me!:)

But a lot of people come here seeking medical advice. I know that usually, we make the "I'm not a dr" disclaimer, but when you're desperate, you'll listen to anyone....
Thanks for opening this to discussion...
Bug

[jmjm530]

Andiamo: think we should restrict our postings to providing information about standards of care, definitions of terms, emotional support and a general recommendation that all new members seek the best and most informed hepatologist that they can find.
_______________________

Could not disagree more with the above statement for reasons already stated by others.

I will say this however, and it goes for internet discussion groups in general – perhaps life in general—and that’s caveat emptor, “let the buyer beware”.

Intertwined with excellent facts and advice, I’ve seen a lot of factually incorrect stuff posted here every day. Hopefully people will check and double-check all “facts” and advice with independent sources especially when an important treatment decision is concerned.

In fact, not a bad idea to do the same regarding what your doctor tells you – I certainly did. And groups like this can be one important resource in that regard because it can put you in touch with other medical points of view as people relate how their doctors handle similar situations.

It should also be remembered that everyone here is under a doctor’s direct care, so no one is prescribing anything that a doctor will not end up approving (or disapproving) in the end.

-- Jim

[jmjm530]

Eric,

Just want to add that I understand where you're coming from because I cringe a lot myself after reading some posts here. But that's just the nature of the beast, and as Mike said, someone usually will then chime with better information.

[ladybug52]

Andiamo:think we should restrict our postings to providing information about standards of care, definitions of terms, emotional support and a general recommendation that all new members seek the best and most informed hepatologist that they can find.

jmjm530:Could not disagree more with the above statement for reasons already stated by others.
_____________

So you disagreed with Eric's ENTIRE statement?
I can't understand how you can disagree about offering emotional support on a "support" forum.

This really is getting off track, because this isn't the "medical" side of the forum. I am so torn by this because this discussion really hits home. Ok! I'm one of the desperate people who will listen to anyone!

I'm sad that I had 2 different drs who didn't know as much about standard of care as the informed people here.

I'm guilty of reading the info here, processing it, and making my own informed choice regarding tx, and not listening to my dr re: length of tx.
I thank you, Jim for putting out the info on shortened tx time for genotype 2.
I thank Nygirl, for walking me through my first procrit injection,on this forum, because I didn't have a dr who would answer my phone calls, or spend enough time educating me.
I really can't be critical about anyone trying to help.

We walk a fine line when we offer advice and support.

[CockSparrow]

I find myself in complete agreement with both of you. In fact i agree with almost everything in this thread.

The thing I love about MedHelp is the Medical Knowledge that people give out.
This place has an amazing knowledge bank of information held in all our heads.
Keeping it there is not something i would like to see happen.

I can also see ladybugs point that emotional support is also important and seeing people having others views rammed down their throats concerns me at times. That said this place also gives very good emotional support in my view.

Jims advice about double checking everything is about the best advice i have seen on here. The reason so many here have so much knowledge is because for what ever reason they need it for themselves and it applies mainly to them.
This can and should be used by others but with the understanding that it comes from one persons perspective on what is important to them and their Tx.

CS

[jmjm530]

No, I didn't disagree with Eric's entire statement -- only the portion I quoted in my previous post. Emotional support is very important on treatment and I'm thankfull for the support you and others gave me when I was treating.  Eric certainly highlights some of the dangers of forums like this, especially -- but not exclusively -- for new comers. And it's not just regarding "diagnosis" but also when questionable opinions are expressed about all sorts of things that could in some way affect the way a person approaches treatment or simply their overall health plan. Hopefully though, things do get somewhat balanced out through these discussions and people will not take everything on the internet as gospel.

Hope this finds you doing well,

-- Jim

this finds you well.

-- Jim

[Andiamo1]

My primary reason for starting the thread was to try and influence people to think about the meaning of their posts.  If posters refine there own ideas on what is helpful and what is not, then we all gain.  I did not mean it as a criticism of anyone.  My own posts sometimes blur the distinction between medical diagnosis and support.  The more I think about what I post, the better the outcome usually is.

We are not doctors; we do have a specialized knowledge in one small area of medicine that in many cases exceeds that of doctors.  In many cases we can give excellent advice, but having a small detailed view of a large complex system easily can lead us to make major mistakes if we are not very careful.

There are some very knowledgeable people here who seem to be aware of their limitations and are very helpful.  Others give advice that they should not. For example, many people would have advised me to stop treating after the third failure if I had posted back then.  My doctor and I believe that I would already have had a transplant if I had not treated every other year.  The point being that diagnosing a patient is very difficult even with the complete training of a doctor and all the medical information at there disposal.  Diagnosing with our considerable, but overall limited knowledge coupled with not seeing the patient directly with the complete set of test results is impossible to do accurately in all cases.

We can do it accurately in some cases, but can we define those cases?
Eric

Eric

Eric

[susan400]

Well said, my friend.    I have an example to offer, I had one PM by one poster who said to me, "stop the interferon, go on milk thistle and you'll be doing fine".   That's the type of advice that you really don't need to hear without the preface, "ask your doctor and see what he advises".   You know?  Fortunately, I do not follow that particular poster's advice, but the advice of my physician's.    

Susan

[ladybug52]

I agree with everyone also! I sound so wishy-washy because I am so good at playing the devil's advocate.
I think that most of us agree that we get important info, but also some biased advice re: txing, retxing, stopping tx, alternative tx, when to start tx.
It could discourage some people from following their instincts, or it could save people from bad choices. We just can't predict the outcome ahead of time, but then neither can drs.
I for one would like to limit advice from only those with known psychic powers, and the ability to forsee the future.
That's psychic, not psycho;)

[Andiamo1]

You got me excited but only for a moment:  I am clearly psycho, not psychic

[frijole]

Some things do stand out here.  We do need to call out each other if information is incorrect and we can correct it.  Personally I am finding myself unable to answer questions that I could on treatment because I am so removed from it, finishing August 06, and not reading C info daily or even weekly anymore.  My relapse keeps me in the game but I can no longer participate in the day to day advice giving (and taking).  So I come here more to look to see what other relapsers are thinking of doing.

Eric, I find you inspiring because you have treated so many times and have finally (it appears) had success.  It is primarily due to you that I have decided to treat as soon as Telaprevir reaches the market.  I am glad you started the thread -- it stimulates discussion and points out the various things we take from this forum.

Medhelp forever
frijole

[Marcia2202]

Wow, this thread has really created some good discussions. I think it will achieve a better awareness of what we post, and how we post it. It should make us think twice about what we write and how we formulate ourselves. And also how we read other peoples advice. Thanks for creating more awareness.

Marcia

[nygirl7]

Thank God that we do have our own brains........as sad as it is, sometimes a doctor just isn't as up to date in his journals and reading as he should be and they DONT always have the correct answer for our specific situations.

I thank God that the people in here taught me and fed me the information that I needed to make my own well informed decisions. Even if they were not correct - a person who does take the time to make educated opinions regarding their own treatment seems to have a MUCH better chance of success than someone who just closes their eyes and does SOC.

I agree 100% with Mike and generally we DO police this board very well (which has lead to some great big giant uh ... debates at times).  

Personally I NEEDED to learn about this disease and will always consider the day I stumbled in here as one of the luckiest of my life.

In the end I truly believe we are all responsible for our OWN care and decisions.  

As Ladybug said..I remember the day when it was MY turn for my first shot and Jim taking the time for ME to write it all out with little hints and helpers.........how much did that matter to me when it was ME?  More than ANYTHING!  And that's why we are here to try to pass on what we've been so generously given.

I believe there is a big difference between diagnosis and opinion and as long as we make sure that we reiterate that we are not doctors and this is only personal opinion for our own experiences..............it's all good.

[scratchinghead]

My diagnosis:
Everyone get more exercise!

Dr. Scratch

[Marcia2202]

I agree with you that this forum is simply the best. People are incredibly helpful, compassionate and knowledgeable. Just amazing. I feel fortunate that I found it!

Marcia

[desrt]

Amen Dr. Scratch.

Andiamo, you know I agree, since we've discussed this before. Besides throwing, "...in my opinion....it appears... I think....it would seem.... my understanding of it..." into every sentence, I also try to use an avatar that would cause anyone to double check and rethink any 'advice' I might accidently give.

The problem I see in forums like this are the 'fads' that people jump in on.


"Predose / highdose your riba."

"Hit it hard and fast."

"Protease inhibitors will solve all our problems."

Though all the above may have valid applications for many people, they also carry the risk of serious complcations for many. Too often people will parrot things they've read here or heard from their doctors and so many others have heard the same or similar that the thread *doesn't* get policed and the disclaimer *doesn't* get made.
Thank you for starting this thread.

[ladywhy]

I have too often read posters telling not advising others whay to do regarding tx...
I absolutely believe that this tx should be more individualised and so does my attending hepatologist who is on top of the latest studies (I think). He was at the Boston conference and in Milan at the latest. I kid with him...saying he must have been playing golf.  I am joking...he has degrees out the yazoo...He got his medical training at the Royal Academy of London. This disease is as we all know is baffling not only to us...but to researchers and specialists..and many heppers, who current studies show, had the best chance of SVR have relapsed,  and those who had the least chance sometimes do. All any of us have is hope. My hope is not in the doctor nor this forum...my hope is in Christ and that NO matter what happens....He has me in the palm of His hand. This is a very scary disease. I don't worry so much about dying...it's the how that can sometimes give me nightmares....and I know I'm not alone on that. All any of us should be doing here is sharing our experiences, directing newbies to studies so that they may have them when they return to their dr. and sharing their strength and hope (if/when they got it). Like I said before....maybe there wil be a paper written about my tx : ^ )...maybe I can offer someone hope....maybe. If not, I think it's best to keep my mouth shut. JMO................oh yea, offering a soft place to land and sometimes a shoulder...Thank God (in the past) that's was what could be found here by the majority.
So Good Luck to all...and I hope everyone achieves SVR!

[ladywhy]

Please excuse the typos...

As I have heard said in the past....it's a **** shoot....might as well be encouraging to one another...'cause ya just don't know... Are studies now saying we need to be UND two years before shouting out "CURE."?

Studies are just that....studies.

Nothing is 'written in stone', regarding this virus or this tx.

[meki]

Only thing I can think of to add to this.... (cause you all know I just gotta add something - I've been bouncing from foot to foot back here trying to stay quiet.. LOL!)

But that MEDHELP does offer this:

"Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum.  ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user."


And I think that the users of this forum need to be aware that this is open cyberspace... That anyone could be here and be a "poser". Or a threat.

We (is it ok if I add myself to the "we" group?) tend to all give info from our storage bases... our own experiences. And, as we all have learned from one another - what one person experiences, a lot of others might not.

I gained so much info from this site, at first it was info overload... Especially when I couldn't even function to communicate... I couldn't put sentences together.

I learned more than my GP --- and possibly even my GI/Hepatologist knows... Maybe not the Science part --- but most certainly more about the side effects - the possible outcomes - and about the overall psychological effects of the disease and it's treatment.

Both first hand and from all of your experiences.

I really --- REALLY - don't think I've given medical advice --- (maybe I have, I dunno....) but if I did - it was definetely in the context of you better check with your doctor --- cause I'm not right there - and I don't have a medical background.

You guys -- no matter what this discussion brings - each of you has played a role in teaching me about this disease...

And sometimes y'all have brought great smiles to my face.

For me --- beating this disease --- or trying to keep it in submission was a lot more about keeping emotionally and psychologically prepared.

For others -- it's about knowing the details of how the virus enters the cell structures and destroys the host.

I'm more of the cheerleader type --- I don't know how to play football --- but I've got some killer pom poms that will let you know that you can do a good job at it!

ROFLMAO!

Love you all.

Meki

[Marcia2202]

You're a gem!

[nygirl7]

"We (is it ok if I add myself to the "we" group?) "

Meki.........if you aren't a "we" then I don't know any "we's" in this world :)
You are the weeist of all the wee's!

[Deb_c430]

You know I been reading this on and off, Spent a lot of time thinking about it.

Some awesome points  here, I am not that scientific, but like a lot of folks I have treated more than once.  have or had many of the sides.   Sure it doesn't make me an expert, but I do have knowledge. At least the minimum amount to  help with sides.

When I first was diagnosed with HepC, there was hardly any info concerning it,  all I knew was I was very scared,  I had a great GI, then. But still, I had no knowledge whats so ever.

Every time I see a new person come in, I remember that fear,  I think most of the people reach out in a lovely way to each other, now there is a new group forming and sharing info.  Their kindness to each other is good to see.

I am a firm beleiver in advocating for yourself,   if I read an interestin study, I print it and pass it on.  But no way should anyone ever jump on a band wagon and act with a Docs approval.  

That is part of advocating for yourself means to me,  learning and sharing.

Current thought now is indvidual treatment, I have always thought that.    I am no Doctor, but I by advocating for me, and me only I can share the load.

Support, courage and a strong will is needed to fight this disease, kindness, compassion and you don't need a Doc for that.

[comeagain]

I think theres a overbelieve in doctors that might be almust as dangerous as to trust a quack. So check them up aswell.

They are only humans but often threated as they were Gods.
I dont think all of of them can handle that.
And therefore not so few of them are having problems by staying objectiv about their own importens and capability of making misstakes.

just a word of warning.
ca

[Trish77]

It's a good post, Eric.  It will make us all think about how we've been posting ourselves and will remind us to take more care.  

I have noticed what Mike Simon mentioned, that there is usually someone to come along and suggest that a doctor's advice should be sought.  I've been grateful when I haven't been as careful on that and someone comes behind me and makes sure that's covered.

Comeagain's point is also an interesting one, that doctors should not be followed blindly.  One of the things that causes me concern is when people come in here asking questions and sharing information about their care that highlight that they are not being treated properly or knowledgeably.  If we sent someone along to those doctors, where would they end up?  So yes.. see a doctor but get copies of everything...and bring the information back again and share it, ask questions....be informed about your own care.

I don't actually see too many diagnoses happening here. I see people sharing insight rather than making the diagnosis and in those cases many people urge them to get tests done and share the results back.  I do see people pushing others more towards getting a diagnosis made via testing.  So personally, I worry less about the level of diagnosing going on here. I don't think actual diagnosing is that prevalent and I do think if someone was going to do that without making it clear it's their opinion and without suggesting that it be confirmed by a doctor, as Mike said, we usually see someone jumping in to correct that.  Your post will give us pause to consider if we've worded it appropriately.

I do see opinions that concern me about treatment options.  Someone chooses something that works well for them and that becomes what must obviously work well for other people.  I think that's a common thing for people to do in general.  I see people getting very forceful with their opinions and forgetting that we're all individuals, the way HCV hits us is very individual, our circumstances in life are individual, as are our outlooks on life.

The ones that are difficult for me are the ones who say "I don't think I can handle treatment any longer".  Whew.  That is so hard to know how to respond.  Not everyone should just simply continue treatment.   And yet, there are many who need the group "blast" of encouragement to keep them moving forward.  Those are tough for me.  I don't think there's a "one size fits all" answer to that kind of post and yet I do see some people take a one size fits all approach to that.

The ones that haunt me are the ones that disappear after asking for support or information or asking a question...only to be hit with some very strong and well meaning responses that urge them to go in a particular direction that may be contrary to where they are at.  Then we don't see them again.  I wonder if we did more harm than good in those cases.  There is one in particular.....a woman who had decided that she'd had enough hassle in this world and simply wanted to prepare to die.  I know my own voice on that was strong because she had a daughter and a grown grandson and I have grown children of my own and am a sole parent so my own emotions and approach to that came into play  .. and we have not seen her again.  That haunts me as I wonder if more harm than good was done there.  And yet, an opinion was asked for, they came looking for information .. and got a little different or other than they bargained for.  All I know is that it concerns me sometimes and it's a judgment call.  

I worry more about the grey areas .. the opinions on what is appropriate and how forcefully we shove our opinions at people.  I think we need to be VERY cognizant that our opinion is simply that... an opinion.  No matter how concerned we are for that person, no matter how on the mark we think our opinion is, it is still our *personal* opinion.  

If there are studies to back up our opinions that turn them into educated opinions, we should post them so that people can read them for themselves and interpret them through their own lenses.

If someone is citing facts and statistics, attempt should be made to be as accurate as possible, cite your sources .. or perhaps withhold that opinion until you have such information available to back you up.  Not always easy to do .. some things we've just learned over time.  

And.. man.. we sure get some wacky posts here!!  I'm glad that there are all kinds of people here .. because sometimes the smarta$$ in me is just too strong.  So I'm glad there are others who will pick up the slack there when a straight answer is just not gonna happen.  

Big, deep question, Eric.  I have been pondering it since you posted it.  I have no idea if I'm even making sense....more just dialoguing back with you on your post.  :)

Your motivation is lovely ... which I believe is to encourage us to consider our words and try to do no harm.  Thank you for posting.

Trish

Trish

[Trish77]

I should have looked at the darn thing before I posted it.. it's so frigging long!!!  

Sorry people....makes it kinda tedious reading.

[ladybug52]

For the typos or the length of the posts! I enjoyed every word of this and my brain filled in the letters or spelling, so for me, there were no errors.
As far as length of the posts, it just proves how passionate we are about this...which is a good thing!
Ladywhy, glad to see you throw in your two cents worth. Haven't seen you post for awhile. Same to you Frijole! You both sound good.
Hope everyone has a great weekend, especially the birthday girl, Susan.
Bug

[IAmTheWalrus]

Nice dissertation, Trish. :)  As usual you are thoughtful and thorough. Never change.
Your comment "The ones that haunt me are the ones that disappear after asking for support .." really struck a chord with me. I always think of the girl who posted pleading for help with HepB diagnosis, obviously destroyed by the stigma attached and loss of trust from her intended spouse. Her last comment (mood) on her profile was [sic] "... is now i ve accepted whatever god gave me".  Never heard from her again.

My first thought from the original post was, "OMG, have I been doing that?"  I probably have to some extent and would encourage everyone to make corrections like Mike Simon says. In fact, we should add a new note type, instead of "Thinking of You" maybe one could be "What are you thinking?", or "Dope Slap Yourself". (not serious):)

This thread has some of the most insightful comments. I have to agree with at least part, if not most, of all of them. On reflection, I think that most of the posts I see are carefully considered and phrased to not "play doctor".  It is an open forum and a lot of valuable information, the kind you often don't get from the doctors, is passed here. I think things are about right as to refraining from diagnoses, but Eric is correct to bring this up so that it gets heightened awareness.

I appreciate everyone here very much. Please send me the "Dope Slap" note if I get out of line!  :)

Brent

[Willy50]

It was a good post Trish; don't second second guess yourself.  

I don't have that much to say.  Everyone else has already said it.  I wish that I knew the boundaries of what is considered "correct" where we should give only so much and then stop.  I read once that doctors have to be very careful about what they say on line since as professionals people are likely to believe them.  I hope that nobody ever takes the words written here as gospel or that they can replace medical advice with on line posts.

Still...... I think with that caveat we should be free to offer what we THINK we know.  Sometimes a second third and fourth opinion is sorely needed.  That's a great thing about forums, and especially in this forum the sheer numbers of people provide a very well rounded picture of the issue.  I think that as busy as doctors are having a patient advocate is wonderful (for the patient; not always for the doctor  ; )).  This forum provides essentially that.  

People try to fill in the voids in what the member doesn't know and what the doctor doesn't provide.  As mentioned, sometimes there are situations where a little shared information on a topic, a study, or what another doctor provided may serve to modify a treatment for the better and at a critical moment.  That's a good thing.  As mentioned sometimes that ain't good enough.  An example; I remember a thread where the member ran out of IFN and the doctor told them; that's OK; just wait till next week.  Now....what do you do in cases like that?  I suppose that it's wrong to tell people to do something different than what the doctor said.  
I
If people kept their opinions to themselves, kept data to themselves so as to be proper....what would this forum be?   When people share, we all learn.  Sometimes doctors even learn a thing or two from things brought from this forum.

We also need to keep in mind that there are limits and we are just well intentioned infected people; not doctors.

Good topic and great replies.  Thanks Eric

Willy

[orphanedhawk]

We give our opinions and possibly our empathy. We share our experiences and that is all we can do. Nobody can reasonably expect a diagnosis on-line. :)

[Marcia2202]

'bump'


I found it


marcia

[dointime]

"Thank God that we do have our own brains"

You said it nygirl.  And somebody coming along and telling me how I should and shouldn't post in general, just gets my goat.

I agree with mikesimon.  The forum polices itself pretty well.  If somebody gets out of line or peddles misinformation it is usually picked up.

As Jim says, everybody has a doctor who has to ok their treatment whatever we write here.  

dointime  

[fretboard]

This is a tight rope type of question b/c for everyone who has been on here you have most likely come across situations where somone was continually told to continue to tx, as the below cut and paste describes.  We definitely have our own brains, but how about that elderly lady who was continually asking if she should stop tx.  Dang!!  That went on forever, when she finally got off and left tx, I for one was happy for her.  This is only a tightrope question b/c you have to identify the incident and of course nobody is gonna like doing that.  I have no choice b/c nobody will know otherwise and it would be a wasted post.  Her name was Ginger, that's as much as I'll say about her name, and she wrote a journal on how bad her sx's were, and she was taking a beating.  We do have our own brains, but obviously she needed support.  This forum should be more about support sometimes than how long you need to treat.  This is not a "one size fits all" virus and some ppl seem to overlook that fact.  Unfortunately this virus is unpredictable and extremely complicated, it is also very individualistic.  Someone said that the forum polices itself and it does to an extent, this is a great forum and there are a lot of great ppl on this forum.  With that said, this is a forum and ppl need support in whatever decision they make period.  It isn't up to anyone else to continually tell someone else on the internet to continue tx and stretch it out as long as it was stretched out for that lady.  I'm not on a finger pointing campaign and it doesn't even matter, it's just that I felt that lady needed some TLC and instead all she got was tx, tx, tx!!!  As I remember there were a couple or one person who was very helpful for her, I wish I could remember their name.     God Bless      

"I decided to quit tx after 16 weeks. A lot of well meaning wonderful people told me not to stop. My choice was based on my own personal decision, and I respect and admire all those who said don't quit! However, it's about support, not how we treat or how long we treat.
There are a some who choose to continue to treat, even though they didn't reach und by week 24. A lot of people have commented that they are wasting their time. Again, it's about support, not how we treat or how long we treat.
Another person who quit after 48 weeks, and did not maintain und at the 3 month post pcr, was told "you should have never stopped at week 48" He was going on his drs. advice and it was sad to watch everyone tell him what he should have done, after the fact".  ladybug52

[Andiamo1]

I am sorry that you think the intent of this post was to tell anyone what to do.  I tried to be clear that the intent was to start a discussion and make people think about the impact their advice has on people.

I believe, and this is only my belief, that medical conditions are very complicated; so many factors both medical and emotional are playing important roles in the way the medical evidence is presented that even well trained and well meaning doctors have difficulty prescribing the correct course of action.

Some people here always present data and their own experience in a helpful and objective way.  Some people are very emotional.  One of the posters here posted an angry message on the board about 8 months ago telling someone not to give specific medical advice.  That same person made a strong post on this thread implying we should give advice.

We humans are very subjective in our decision making.  The only purpose of this thread was to make people think about the issue and make their own decision about how to post.  I put myself in the category of not always being aware of how my posts will be perceived by others.  I do try and stick to my ideals, but I don't always succeed.

[Andiamo1]

I forgot to add that the reason I posted the following in my opening message was so that people can understand that I do not think I have the answer for anyone other than myself.
----------------------------------------------------------------------------------------------------------------------------
I do not mean this as a direct criticism of anyone.  I hope to start a thread where people can define a general philosophical guideline.

My own opinions are not necessarily correct although I would be amazed if the were not :).

[medicmommy]

It's a very sobering realization that advice you offer may effect the person who listens the rest of their lives...It may make them decide to quit treatment when they may have been able to work their way through the worst of it, or push them on to the point of endangering their lives...I'd met a newbie in a live chat forum that was so miserable from riba induced depression that he was suicidal...It took several of us voicing great concern, and sharing our own experiences to get him to think there was still hope, and that he may need an antidepressant to help him "over the hump" ...He was txing for 72 weeks...he is now finished and UND X 4 months....And a 1b, to boot!
He was one of those, had he been simply told, "don't quit" instead of receiving support and shared sufferings, we would have been reading his obituary somewhere...It isn't a game...And, this stuff can do horrible things to the body...Not all bodies can process it, and nobody is a failure if they have to stop. It's a good thing this is a disease of decades...Those who decided to wait, treat again, or not treat at all, don't have to make that decision overnight...Many statements after the fact, are made in ignorance, and are unnecessarily cruel...It is an individual choice, and should be  respected as such..                                             ~Melinda

[Mikkimoe]

Yes - to whom it may concern...and that is all of you. if it were not for your deep concern you probably would not be here posting or hiding and watching and waiting to post.

We all express our concern in unique ways -
some listen and paraphrase to learn more,
some listen just long enough to spout out the first thing on their mind -
some ponder, research and return with their concerns and comments.
Then there are the relationship types who just have to make you feel better no matter what they have to say. Instant hugs all around

It's fun watching the personality types interwinding through the threads (yea i also taught Myers briggs Personality styles). We all process differently - what one would read as a cry for help (such as my recent thread begging for some brains to help me through a tough desicion) another would read as a mission to search the archives, the other would only want to hug and console...then there is the creative that just wants to do it all outside the box. Let's try something new.  What a wonderfully entertaining world we live in if we can see all these as unique assets and use them to our advantage. But alas most new bees plow on in scared to death wanting - needing answers now - and all of our personality instincts kick into high gear to give support. It is not that one is better then the other - we need them all to be complete. It is just the art of learning to use the right one at the right time - why some very successful people seem to be able to communicate effectively with everyone all of the time - they have mastered the energy styles. I'm feeling lke you trish...boy the fingers are on a roll here - sorry for the journal

What I was really trying to say is some are vulnerable, some are experienced, some are scared to death - it's up to us to acess the situation and find out all we can first, educate where we can - direct to higher sources and give unconditional support and humor is always good too!

Since I'm a creative -relationship type I know I have a tendency to spout before I think. I know I want to help them NOW...just hug them to death like a golden retriever - but i also know that approach only works when I'm planning parties and being a relationship mediator. So I stay away from those posts usually unless I am of sound mind (not on tx) I put on my logic hat first and dig a little deeper - find out more about the situation - then put on my grounded hat and work with them to be inspired and to seak information and to be responsible for the course they take.

It has also been my experience with 15 years from Dr to Dr and 3 botched surgeries out of 15 that you can't just trust anyone who comes along - I interviewed 3 heptas before picking the one I did. It is soooo important to get accurate information and to be as educated as you can possibly be when you have those discussions with your DR. I bring in a 2 inch folders and review study after astudy with him and he lets me because we have built each others respect. That's what happens here...some have built the bridges - some are building them and some just don't know how yet.

Oh gee I was going to try to get to bed before 2 tonight...I must be feeling better...I truley appreciate and respect all that you have said and love all of your feedback....My self talk guy in my head loves to take all sides of every issue before sorting it all out in what is ultimately my decision...not to say that when you are all druged up and vulnrable peer pressure can creep in - ha. I always wait a day after the "moment" to re-evaluate before following through.

Sorry to bore you if I did - I've had such little interaction with people anymore that i have these conversations with myself.

Great thread Andio and mates

[Marcia2202]

Thank you for your wise and insightful contribution to this thread. I hope you are doing better.

Marcia

[meki]

LMAO - mikki  - I just adore you.

You're a one of a kind neat person.

Meki

[Mikkimoe]

Ahhhh - thanks

I did learn a lesson on that post....don't overdo if you feel better (which you have all told me) I can't move at all this morning - totally locked up. I am typing this with the one finger that works....It's an ice pack and rest day....no more finger talking for a while.

<<<<<<<<<<<>>>>>>>>>>>>>>>>>

[Marcia2202]

So sorry. Take care and get well... No need to reply..

Hugs, Marcia

[meki]

Hmmm you wouldn't be waving that middle finger at me - now would ya?

*wink*

[Marcia2202]

I would like to add something to this thread.

Someone pointed out a great point to me today and I think it is definitely food for thought and I personally also noticed the same thing on several occasions. This matter has to do with scaring people away from this forum, due to the usage of too sophisticated language.

Most people on this forum are highly intelligent, well educated and very well phrased.

Sometimes people post questions in very simple language and get replies in very sophisticated language, which they might not understand. I'm sure it can be very intimidating and discouraging and they might get totally confused, feel inferior and run away.

So I think that we should be able to speak in 'their language' when we reply. Put things in lay man terms....

You guys can go ahead and post things how you like when you're posting to me. I understand, even though I cannot express myself in the same sophisticated way. Maybe my English will improve, once I have been here long enough, you learn from the best. ;-)

Marcia

Marcia

[dointime]

" I tried to be clear that the intent was to start a discussion and make people think about the impact their advice has on people."

"The only purpose of this thread was to make people think about the issue and make their own decision about how to post. "

-------------------------------------------------------
I find this patronizing.  I already think about the impact my post will have before I write it and I make my own decisions about how to post.  I don't need you to tell me what to think about or confer your 'superior' awareness on me to help me with this process.  Sure I get it wrong, just like everybody else but I don't think I've got this wrong - well I wouldn't, would I.  :))  I guess we''ll just have to agree to differ this time.  That's what so great about this forum, that we can all speak up,

dointime                      

[Willy50]

I think it's a great thread with many wonderful responses, a lot of thought, insight and warmth.  It's also nice to see so many friends weigh in on the topic.

If it were a lame topic I don't think it would have gotten the responses that it did.  From the time it takes the page to load..... it seems to have met the criteria for a good idea, good thread, thoughtful responses.  Not only is it good but I think it's great AND pertinent.

If it's fine to be able to speak up in this forum, then surely this thread must also be fine.

best,
Willy
------------------------------
ps...... marcia, you do a splendid job of writing in another language.  You must really rock in your native tongue.

Mikki.... I'm sorry you overdid it but it was still a great read; now go rest your finger and heal.  : )

[Marcia2202]

Thanks, unfortunately I have no native tongue. I speak 5 languages, but none perfectly... Probably English has become the best of them... It can be a real bummer sometimes, trying to express myself. Well, one learns to live with one's limitations.

Marcia

[Marcia2202]

I'm almost starting to regret having bumped up this thread again. I thought this would be a healthy discussion on how we can improve OUR forum all together.

dointime....

I don't think Eric's intend was to patronize you or anyone, nor to tell anyone how or what to post.  And I'm pretty sure that using the word ppl meant inclusive himself, as he at several occasions uses the word we and also admits to sometimes being at fault. He never says 'you', which would implicate everyone else but him, and that would be patronizing. How I see it is that he simply opened an important discussion so we all, including himself can improve the forum.

I personally took it as positive criticism and self criticism from his part, to create awareness on how and what we post. Not any person in particular but all of us as individuals. There might be some of us on the forum who never will commit an error posting something. But I personally think that with so many people from different walks of life and different cultural back grounds any misunderstandings can happen. And it is always good to be a little extra vigilant.

At last, I just want to say that I hope I did not offend anyone with anything I said, and if I did I ask for forgiveness beforehand, as it was not my intention to do so.


Marcia

[Andromedae]

"Personally, I feel strongly that people should never present answers to questions as if we are doctors.  Even if we were doctors, we do not have patients if front of us nor are we reading the test results directly. "

A great thread and good questions to ponder.  For myself, I might turn your idea around a bit and caution people new to the internet that "we should never accept an answer to a question as if the person giving the answer was a doctor" It pays anyone to keep in mind that a given answer may be very legitimate and correct ...  or utter nonsense, opinions misrepresented as "fact".  

Critical thinking becomes not just a "nice to have skill" on the internet but rather a survival skill for people in situations such as we.  Personally I don't accept anything I see anyone saying as a fact unless I see it backed up by a medical reference (that I've dug out) or verified by someone who's opinion I feel I can rely on (and even then...) .  I think one should always consider the context surrounding the person who is presenting the information;

1. Do they have a reliable "track record" for similar information in the past?
2. Do they have any actual personal experience ?
3. Are they enamored with the facts or their own opinions ?

Andiamo1, I think it unlikely that one can change how people post in general but perhaps one can change how some people think about what others are posting.

All the above is true , in my eyes, for any place on the internet - not just here.

A.

[GoofyDad]

Surely few of us are qualified to dispense concrete treatment advice. None the less, much of the value that one can derive from this forum comes in the form of meat and potatoes reccomendations from down where the rubber meets the road. How's that for mixing the metaphors?

I think there are worthwhile medial perspectives presented here that many would not have access to were they to look only to their treating physicians offices for treatment guidelines. Here we read of people with sub-optimum RBV doses, people pulled from tx for morderately low WBC values, etc. Those people get sound advice that is often contrary to that of their physician. This forum is not touted as a place to receive  alternative treatment information, but certainly does provide that in spades (vulcanized road spades).      

[Deb_c430]

This I see is relative to post I read earlier and chose not to respond to.  this forum is and should be for info only!  

I love theory, I love having another perspective,  to contemplate, doesn't mean I am going to follow it,  you can't make every one happy.


Bottom line for me though is always this, my body, my choices,   ALWAYS my decsions.

Some folks are very plain spoken, soft are softer, some speak a truth directly, some like sugarize their words.

Some of the most caring people on this board, sometimes sound the harshest, some the opposite,    

Take care all

Deb

[orleans]

Well I'll just say this, I was LOST until I found this forum. Before then I couldn't even form an intelligent question to bother my Dr with!! After boneing up here I went to my next Gastros appoint with a list! After a few minutes he SAID this "truth is Jerry, at this point you are likely more knowedgable of HVC treatment than I am and you should find a hepatologist" TRUE story. I was way ahead of him and that was my intention when I went to this appointment. This guy had offered to treat me 6 months before! So glad I didn't take him up on that. Bottomline is it is best to take responsibility for our own care, gather as much info as possible,(this place is the best for that, just takes a few grains of salt, you know you always will have butt talkers!), listen to what your DR has to say and form a plan of some sort. jerry

[Trish77]

I agree with Andromedae's post that we should all exercise critical thinking.  At the same time, seems to me we're required to consider the impact of what we put out there too.  For example, is an opinion being posted more as fact when it's really a personal point of view based on the sum of one's experiences, knowledge and circumstances?

For me .. the responsibility lies upon both.  Primarily, it falls upon me to take care of me  and think critically for myself and make my own decisions. However, to expect that all people will do this and place no responsibility upon myself at all seems utterly careless, lazy and irresponsible.  When someone is asking for opinions and advice particularly and wants input from others, I personally feel a responsibility for the potential impact of the words I'm putting out there and how they might be interpreted and sometimes I agonize quite awhile over a post to get the wording just right so that what finally gets posted is what I can live with...that it's as honest to what I believe as possible and that it does as little potential harm as possible. Crazymaking?  Sometimes.  But I gotta be able to look myself in the mirror and this allows me to do that. I may not always achieve that as well as I'd like and then I have to live with that...which ain't fun on my conscience so I'd rather just take great care for particular subjects when the information has the potential to influence either positively or negatively ... and put up with people judging the way I tend to express myself in writing and the sincerity of my posts.

[Deb_c430]

Trish I agree with that whole heartedly,  

I also think when you put something out there,  asking opinions, that is what you are going to get, they aren't always going to match.   Often people get hurt feelings and honestly i don't want to be responsible for that or causing damage to anyones body.

I have learned a lot from this forum also, things I have been able to look into for my self,  discuss with GI,  taught him some stuff also!  Would I trust anyone on this forum to diagnose me,  no!  Give me observations yes, help me put aside some frantic fears yep.

But my body is not theirs,  my labs are my own, my reaction is always going to be different.   Our disease the same, our bodies reactions to things different. Our histories different,,  

It is a fine line sometimes.

I am all about self advocation, information is key to that.

I rarely post any more on here, I find the games incredible,   perceptions are sometimes very un balanced,  to much friction lately,   to many posting only to cause drama. Assumed names,  games, so silly!  

Yet I like the people I like,  I make decsions for myself,  on my body, who I care about, whom I am better off not communicating with.  

Sometimes I think frustration also causes people to react in a negative way. it just never seems to end.

I am txing to hard, with to many sides to get into head butting matches. With someone whose only goal is to cause bad feelings.  

Anyway  those are my views,  you know your my friend, as are some others,   I am loyal to all.  


We all say dumb things sometimes,   but i don't think it means they are to be beat up on.

[Andiamo1]

99% of the posters seem to understand exactly what my intentions are with this thread.  Some of the smartest and most helpful people on the forum often express there opinions in a strong way but make it very evident that it is there opinion.  I did not mean to criticize anyone.  

I like debates about complex subjects and this seemed a good one to discuss.  We have lots of people with good ideas on all sides of this issue, and I think it is good for all of us, including me, to understand the impact of our words on other people.

If someone thinks I am patronizing, well they can think whatever they like.  So dointime, I think you are having a bad day and don't have the self control to prevent yourself from taking it out on other people.  That's too bad.

I learned self control the hard way; I went to a school in a very tough neighborhood.  If you weren't polite, you went home with a black eye, or worse. I try and never forget that lesson.  That's tough to do when you are on TX, so I have plenty of forgiveness for anyone on TX, but very little for straight people.
Eric

[Andiamo1]

I meant their not there

[scratchinghead]

Hmmm, lets see here, I better right in is folder that he refuses to excercise and would rather spend his time slowing down the internet. hmmm

Dr. Scratch

[scratchinghead]

I ment write not right

[scratchinghead]

I meant meant not ment

[ladybug52]

....and maybe you meant h-i-s instead of "is", or maybe you meant t-h-i-s instead of "is"...who knows....

[jmjm530]

Andiamo: and I think it is good for all of us, including me, to understand the impact of our words on other people.
----------------------
In the spirit of good discussion, let's twist this the other way. What about the impact of being silent when we see someone heading in the wrong direction, based on everything we've read and heard from doctors. Like Goofy Dad suggests, just so much sub standard medical care in this field.

Many people come here looking for information and advice that to complement what their own physician gives. I know I did. This forum can be a valuable resource in that regard as long as people check and double check the information they receive with independent sources.  Not sure if I fit into the 99% that understand the "intent" of the initial post, but I certainly hope people will continue to freely contribute everything they know and that those reading the posts will take the time to check everything out.

-- Jim

-- Jim

[CMcH]

Thank you for your post. I have been checking on and off on this forum for about 8 months and have always appreciated your sound knowledge. I have started TX about 5 weeks ago and have not seen you as much on this forum lately. It is always informative to read your posts. How are you holding up?

[jmjm530]

Thanks for the nice words and for asking about me.

I'm holding up pretty well for an "old" man, as my doc sometimes infers :) Certainly better than many off treatment, not as good as some, but so be it.

To clarify some on my previous post --  I meant more "intent aside" because intent can get a bit complex. The point therefore had more to do with whether I agreed with Andiamo's original post, which on re-reading I still do not agree with and it also appears the members are quite split on that as well, with some posters more diplomatic than others and I'm certainly not making that a positive or negative with this type of discussion.

That said, many good comments in the thread I do agree with, but not the original post. Specifically, the paragraph reading:

"I think we should restrict our postings to providing information about standards of care, definitions of terms, emotional support and a general recommendation that all new members seek the best and most informed hepatologist that they can find."

I just find that far too restrictive and dont think this place would be half the place it is if followed. And even though I feel there is a lot of misinformation here almost every day that sometimes makes me cringe --  hopefully those posts will be balanced out by others with correct information/studies in the same thread,  and even more important by people double-checking evrerything before taking any action.

BTW that's a wonderful picture of you crossing the finish line in your profile. Let's hope it's a metaphor for your treatment! It's great to know that even though your activity has significantly decreased, you still are able to engage to some extent in many of your favorite activities.

Be well,

-- Jim

[Andiamo1]

Quite honestly, after reading many of the posts, especially yours, I have come to agree with you that my original thought was too restrictive.  I also definitely think of you as one of the most thoughtful posters that always carefully give your opinions and suggest that the poster see a good hepatologist.

My original concern and the reason I started the thread:

I think the human body is an incredibly complex system and when people post symptoms, they often leave things out.  Add to that, we are not trained doctors; we have a lot of knowledge about a small part of the medical field but we are missing many vital parts.  We also don't physically see the person and don't have all the medical history.  All this makes it easy to misunderstand the situation.

The other major reason is, as we know all too well, SOC is incredibly difficult and many people have a strong desire to quit.  When one of us gives them data that reinforces the desire to quit, we might influence them to do it.

Some people in this thread say that anyone who acts on advice here wthout a corroborating opinion is misguided.  I agree that they are misguided, but the real issue is that they might act on the advice.

Some people told me on the forum, that I had a very low probability of SVR even with Telaprevir and that I would probably end up with serious heart problems as a result of the drug.  You might remember that thread; that was the primary reason I started this thread.

You pointed out very wisely, that I threw the baby out with the bathwater; I thank you for that.

Eric

[jmjm530]

Thanks and I echo that sentiment as your posts have always been helpful, informative and thought provoking -- perhaps a little too thought provoking like this thread :)

No, I missed the thread you're talking about, but it's not surprising as just about anything gets posted here on a given day. And hopefully/hopefully/hopefully people understand that just because someone says something here, however emphatically they say it -- no matter how many exclamation marks and capital letters they use -  that what they're saying is true. And that goes with doctors as well, but especially with lay folk who post here.

Enjoy that most deserved SVR!

-- Jim

[FlGuy]

Some people here have demonstrated expertise of diagnosing hepatitis scamious,  cranial rectumitis and many have been dx'ed with oral podiamis by others in this forum. But, we do our best when it comes to vision; farsighted, nearsighted, myopic and blind.

[Frank303]

I'm new to the forum and of course do realise that .

Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum.  ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.

It's no different in real life. If a patient goes to their Doctor they are getting a medical opinion (albeit a highly trained professional one) and the patient can choose to either folllow the advice, seek another opinion orignore the advice altogether.

[Lady Lauri]

LORD! What a thread! I don't have time to read it all, many good post and Eric....understood where you were (and did) go with this and your intent here.

That said (and no time) this site is invaluable. Nothing helped me more from the day I was also one of those scared, just diagnosed people, knowing nothing about any of this. I learned more here than my Dr., and I have a dam good Dr.! Let alone the massive, continual  support and kindness. The combined knowledge here, you can't find anywhere. All the many opinions, insights, knowledge of the many different people beats anything I have researched and studied elsewhere. Not to mention explaining to me when I'm reading something saying 'HUH'???
  Every time I even mention I reduced all thru tx, I state "I do not recommend" or check with your Dr., which I do believe is Eric's point, recommending something versus "DO this or DON'T do this".
  Have to run....our site....priceless :)

Be well all, and everyone play nice, LL

(least I have a 'book' to read in bed tonight :)