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Avatar universal

What happened to my Post?

i guess we are not allowed to talk about alternative treatments on here hmmmmm ??

i posted a link to an herbal treatment i was wondering about... and now its gone...
26 Responses
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Avatar universal


THANK YOU ALL FOR ANSWERING MY QUESTION. I ALSAYS THOUGHT SPAM WAS MUSHED UP MEAT IN A CAN.
Helpful - 0
86075 tn?1238115091
oh, I kinda misunderstood you...from one verbal to another...this will be all over for you anyhow, and you'll be enjoying your SVR!!!!
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Avatar universal
Yes, the search function here at MedHelp is pretty minimal.  But if you google a poster's name thusly (I'm using mine for an example): "pigeonca site:medhelp.org" you will find all of their postings on this site.

That's a  great idea, by the way, to  include a "bulk" section of MH just for spam.  That way the spam would be saved for the record, in case anybody wants to check anything out, though God only knows why they would.  But maybe somebody will write a PhD thesis on spam some day, and it will all be available for them.

Happy SVR to you, and have a cool weekend.
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184420 tn?1326739808
ok the reason it disappeared was because i posted a url sorry

i am not trying to sell anything, just wondering about alternative treatments besides milk thistle... i was on interfuron & virimadine for 6 months and have been off tx for over a year and in the interim i lost 4 teeth and have gastro problems i never had before and according to the trial people it didnt work so im not going to treat again unless they come up with something better or unless i get sicker... i had a biop 3.5 years ago and they told me i was stage 2/grade 2, and a bunch of ultrasounds show no inflammation... i feel ok so i guess i am ok haha yea rite

the link i posted was for LV-52, the mfg posted all these trials and have supposedly been around since 1930...

i know im grasping at straws lol
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Avatar universal
Foresee you're always a very nice and supportive person here, so I'll try and address some of your concerns. First and foremost, I don't own medhelp. I'm not in control of what gets posted here, nor do I have admin privileges to delete posts or manage the site etc. I'm just a visitor like you, I have no more say in what's suitable for posting than anyone else does. So my objection to the recent deluge of alternative therapy advocates (complete with links to commercial sites and name brands) combined with a spamfest of overblown anti-interferon ads, is simply that - an objection. An opinion, and an opinion that those sorts of posts should not be allowed here (especially so that they dominate and "rinse away" meaningful posts). The reason I believe that, is because I believe the medhelp liver forum is special and unique from most any other hepatitis forum I've visited. When I first came here a year ago I was amazed at the level of discourse and the in depth scientific nature of the discussions concerning the treatment of hepatitis (including contributions from real doctors from time to time). It really was an island of light in an ocean of darkness in that regard - a rare find indeed. This forum really stood apart in that fashion, and I strongly believe that's why it's become so popular (it might even be THE most popular hep forum on the net right now).

I also believe the medhelp forum's focus is rightfully on scientifically supported/researched treatment strategies (as generally alluded to in their own site descriptions). And yes, most of those strategies (today) center around interferon, ribavirin and now the newer drugs currently under development. I think it both appropriate and desirable that the forum focus on those treatment strategies instead of allowing it to descend into a spamfest of anti-IFN/alternative hogwash (which is what's been happening here lately). And for those who are extremely keen on alternative therapies and want to focus more and more on those topics because they believe interferon is the great satan, then my goodness you already have the entire internet to choose from. There are literally 1000's and 1000's of herbal/alternative/holistic sites out there to choose from to really sink your teeth into if that's what you're looking for. The assertion that there's some grand conspiracy to silence the alternative cure crowd is absurd - they have a much larger and louder voice on the internet than conventional treatment advocates. If there's a threatened voice on the internet, it's the voice of rationality and reason, not the other way around.

Secondly, I'm not in any way suggesting that there should be no discussion of alternative therapies here - far from of it. I think alternative therapies definitely have a place and the topic needs more serious investigation than it gets right now (within the medical/pharmaceutical industry). In fact, I've engaged in countless discussions here about various alternative regimens including actually advocating some of them myself. I've known I've had hepC for 10 years now, and I've read many books and websites on alternative/herbal treatments and have tried many of them myself (that I deemed safe). I've taken milk thistle (for many years now), NaC, ascorbic acid, alpha lipoic acid, licorice, dandelion root, burdock root, shittake mushrooms, turmeric, vitamin E, and many others that slip my somewhat fractured memory right now. None of them cured me, and I don't believe any of them really made any appreciable difference in my overall health either (some of them would alter my mood in a positive way though). The only thing that really helped me (outside of IFN+riba+VX950) was to quit smoking, quit drinking, eat right and get lots of exercise. That *definitely* helped, although doing all those things was alot more involved and difficult than simply swallowing pills and drinking herbal tea (which is what much of this alternative stuff boils down to for those looking into it).

Lastly, I think medhelp could be doing a lot more to help its members ferret out some of the BS on their own. Much of what we've been reading lately is definitely coming from spammers or other sources with dubious motives. On other forums I've visitied they have certain features which make it much easier to figure out who's a scammer/spammer and who's not, including:

1. The ip of the member could be posted so that the source of origination could be traced. Sometimes anonymous proxy servers are used to obscure that info, but if an anon proxy ip address is being used, that in itself is a red flag indicating the possibility of someone playing games.

2. A feature that allows you to click on the members name and see their profile should be included. The profile info should include how long that member has been around, how many posts they've made, and in what forum they frequent most. Most drive by spammers have a fairly typical profile - they suddenly show up one day out of the clear blue sky, with strongly worded opinions usually about how bad interferon is, and how they (or someone they know) were cured or otherwise helped by herb/supplement X (brand names and/or weblinks are often used too). If you were able to see on their profile that they're brand new with no or almost no posts to their credit, that would suggest a possible spammer. If you could see in their profile that they were posting on other forums too (other than hepatitis) and were found to say the same type of things except applying it to some other disease, then again that would be a possible tipoff of a spammer.

3. The member profile info above all should include the ability to see (a) all of the threads that member has started and (b) all of the posts that member has made to other threads. This is a very powerful feature that can really cut through the BS in a hurry. Most spammers are busy people and can't/won't take the time and care to sit down and engage in multiple realistic conversations with multiple people over a prolonged period of time - especially without constantly pimping their own product/agenda. The ability to see and read through a long/established history of posts can really clear up who's legit and who's likely not legit. This feature is also critical to other members for the simple reason it would allow you to find posts you remember reading or contributing to (including your own) with certain members in it, but can't find because of the supercrappy search function here (sorry medhelp, but it's true). For instance, "hepatitis researcher" (the super smart liver doctor that was here a while back) posted many extremely enlightening posts about alternative therapies of all things (as just one example). But more often than not I couldn't find his previous posts because there is no function that allows you to exclusively filter out a particular member's posts. HR eventually left the forum, and I know he was getting irritated and burned out on responding to the same repetitious questions over and over again simply because no one could find his previously stated comments on the matter. So this feature would be fantastic both for exposing s(c/p)ammers and retrieving/accessing/sharing valuable legitimate info already here.

4. Considering that it will never be possible to always know 100% of the time who's a scammer and who's not, I think a third forum should be added to the hepatitis ensemble. That forum should be called "bulk" or "possible spam" or "deleted posts" etc. A post that's deemed likely spam (without knowing for sure) can be moved there outside of the two main forums. But it isn't deleted outright, it can still be easily accessed by those who are interested by simply clicking on the "Bulk" forum link. And if anyone really digs what that person is saying they can respond and chat just as they do now. That way it's the best of both worlds - the main forums remain uncluttered with junk. The people who aren't spammers, but just look like them don't get censured into nothingness, they are simply moved to the side of the road where people can still see what they have to say and interact with them if they see fit to do so.

Anyway, not to run on any further, but that's how I see it. Let's keep the MED in medhelp strong.
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208237 tn?1190185605
   Wow, couldn't get a word in edgewise ,lol    
     Mostly want to add my thanks to cindy and MH. great job !
   But reading the posts I think  mremeet and desrt. figured out a way to world peace !   Besides oil  the mideast has a huge population of goats and from what I hear, the nads are not so important.   buy MGNs end the war ! lol!
    lastly, i horn, you had it wrong, Its Budwieser and winstons that work.  
       Alohas all !... R.
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Avatar universal
Agree with you on herbs. People might feel better when use herbs, it does not mean that liver is getting better.

...I think that person who has end of 2nd stage/grade should really consider interferon treatment.
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Avatar universal
one more time,


thanks a million for this site. it has been a wonderful support during my treatment.

bobby
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Avatar universal
There you go with the "Mystical Goat Nads" again. You intrigue me.
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99052 tn?1270983520
wow after mercmeet pointed me to the top of the page to look around I see a add by where there is a doctor on the web ,for silver colloid you know the stuff sold by snake oil salemans  for hep C . So med help will pull a link for herbs and call it spam but it is ok for them to run a add for fake hep c cure as long as there is $$$ in it for them. Hey Thats fine it's the American way.
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Avatar universal
I don't think those two guys were breaking the rules.  We do discuss alternate therapies here, just can't keep reposting the same thing over and over and can't provide URL's where they sell such stuff.  But honest discussion of any therapy, no matter how wacky, is just fine.  Sure, many of them don't work, but if we didn't openly investigate them we'd never know.  For example, milk thistle won't cure hcv, but as I understand it, it will lower ALT levels and may help heal the liver.  I learned about milk thistle here on the forum and, of course, ran it by my doctor for her take on it.  That's what the forum is for - just no snake oil sales or spamming permitted.
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148588 tn?1465778809
hep62pj: I've never run into a problem discussing alternative treatments on this site. People just aren't allowed to promote product.

MedHelp: Thank you for the great job you do. Sorry we've been such a pain the last week.

mremeet: Quit talking about the nads. Soon everyone will want them. You'll be responsible for driving up the price and 1000s of castrated goats.
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86075 tn?1238115091
Just for starters, I think youre one of the most informed, articulate people here. Your dissertations on the new trial meds the other day were really great, with many points worth considering that aren't always brought up....I'm really glad you post here. You also have been one of the voices against the occasional chaos-phases that happen here from time to time, which I also really appreciate...

But really, I think youre taking it a bit too far in saying that we shouldn't talk about milk thistle, etc. here at this forum, as being and adjunct----not a cure----for hepatitis.

Personally, I'm really glad for my regimen, and I think it's done a lot to keep me in a good state (along with all the other things I do, and yes, I couldn't tell you what is doing what and how much) while I waited for these new trials - to really try and eradicate these dang bugs for good.  I was told by my docs I could wait, and I did so, for the newer drug trials.

And I've said it before a hundred times, so glad you guys are talking so much about the new drugs, you benefit all of us...But this is a hep c forum, and there are many people who didn't SVR after a few tries with soc...and *possibly* keeping their inflammation down is probably a very good thing in terms of waiting for new drugs coming down the pike...there have been studies indicating these possibilities with these few herbs and supplements, and more are going on as we speak...

As we have all recently witnessed, there are people who are adamantly and furiously against present SOC drugs, and warn people off them at all costs...this is ridiculous considering the alternative scenario of accelerated liver disease for many hep c sufferers. Although problematic, these drugs can be the only game in town for many, and these SOC drugs have *cured* many people thus far...

But let's not take the opposite tack, and ban ALL TALK of herbs and alternative therapies...No where does it say on this forum that we are only allowed to talk of SOC and trial drugs...and let's be honest, when people talk of the more "suspicious" alternatives, like light therapy, or blood washing or collodial silver as a "cure" for hepatitis c, there are enough highly informed naysayers to give any newly diagnosed patient many other perspectives on such outrageous claims....*many perspectives* period equals a good, unbiased Hep C forum, at least to me...respectfully...
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99052 tn?1270983520
I have never promoted anything here but free speech and free thought. only one screen name for the couple of years I have been here. Glad to hear from med help it is not selling out for now.
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206807 tn?1331936184
I have entered a few positive posts on alternative medicine (Glyconutrients, Milk Thistle, etc.) and have never had a post removed. I made it a point that I was not promoting them and never posted a url. I feel Med Help is doing a great job and should be more active in removing the B.S. and Blatant Drama Posts. I am not insinuating your post was either
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Avatar universal
Well said.
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148987 tn?1287805926
Alternative treatment threads don't bother me. 'Interferon is the Devil' threads do. They overstate the risk and scare people unnecessarily, particularly those thinking about treating or just starting their treatment.

The thing about herbal cures is, the book ain't out on that one simply because it hasn't been played out. You can take herbal medicines for 15 years and then end up on a transplant list. Does that mean it worked for 15 years or that you're an idiot for believing it would work.

If you're taking herbal cures for hepC to control it and you're only 2 years into your dx, then it's pointless. Come and see me when the 'herbal cure' has kept you alive for 20 or 30 years.

I've had hepC for nearly 30 years and I could say, 'Yeah I controlled it with Jack Daniels and Marlboro Reds for 29 years but I finally required treatment. '

Just because your taking herbal medicines and your hepC hasn't started blowing up your liver doesn't mean a thing. I contend given enough time, your herbal cure is the same as my Jack and Marlboro cure. In the end, it just doesn't work.

But good luck anyway.
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86075 tn?1238115091
I take your point...but in my own case, I got off my regimen for 3 months and my alts went up to 75 or 80, forgot which...and I felt worse, was more symptomatic...they stay in the 20's normally, with everything else normal...

and that got my attention...Now could be that it was a coincidence, maybe it was, but I'm sticking to my regimen till I'm in a trial in about September...I'm a geno 1b and I just thought I could maybe up my chances with a trial, so I've waited for one...we'll see...I've had this over 30 years...

For me, i was glad that I had studied them and consulted who I did and took what I took...this is just my own experience, and I don't expect anybody to believe me, (anecdotal is only anecdotal) and I'm not advocating what I did to anyone else.....I have low liver damage and I'm fine with people thinking that what I'm doing is crazy, and I should of just treated years ago...I've had plenty of people tell me that, lol...I there are so many unknowns with this disease and it's treatments...this is just what I did and we all go our own ways with this, and believe what we believe...I'm just glad you post here cause I enjoy your humor...

my only point was I think we should be free to discuss these types of things, as long as we dont post urls....
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86075 tn?1238115091
forgot to say, I agree with you on the interferon threads...if you look at more measured arguments, like Bobby's and Jim's...that's something else....one can either agree or disagree on the merits of someone watching and waiting if they have little liver damage, particularly with these new trials starting up...but I agree for people to come on and say to a person with stage 3-4 damage that they shouldn't treat with interferon based therapy under any conditions isn't helpful...but that's just my take on it...
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Avatar universal
Did you guys read the medhelp blurb at the top of every thread? It says:

"This forum is for questions about medical issues and research aspects of Hepatitis such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis."

Let's re-read a few features of that statement more carefully: "This forum is for questions about medical issues and research aspects of Hepatitis..." Just in case you're wondering, "medical issues" and "research aspects" have nothing to do with imbibing the mystical goat nads you guys are pimping. "...questions about being newly diagnosed, questions about current treatments..." Again, mystical goat nads (MGN's) have nothing to do with being newly diagnosed and are not a part of current *medical* treatments (hot tip #4376 - the "med" part in medhelp is short for, uh, "medical"). And the reason ozone, colloidal silver, licorice, UV therapy and your beloved MGN's are not a part of medical treatments is because they don't work. Surprise!  "...information and participation in discussions about research studies and clinical trials related to Hepatitis." As I'm sure you already know, MGN's are not a part of research studies nor clinical trials related to hepatitis. And once again, obviously they are not is because they don't work.

And no matter how many times you re-register under another name and no matter how many times you repost more and more annoying spam in an attempt to cop a buck from some unfortunate, frightened sap with hepatitis - those facts will remain unchanged. So relax and make yourselves a steaming hot cup of MGN tea, god knows you deserve it.
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96938 tn?1189799858
Amen, and Thanks!
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Avatar universal
Hi Cindy,
I think you are doing a great job here and really appreciate this forum. Also good job deleting the recent posts from abbas. Glad to know that there is a forum that has an admin that cares. i have been to probably every hepatitis site on the interent and this is the most informative by far! keep up the good work.
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Avatar universal
We have not and will not "sell out" to any pharmaceutical or herbal remedy companies!!

Cindy Thompson
Med Help International
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Avatar universal
I removed your message because you posted a link to an "herbal" website.  Often these companies do this when trying to get free advertising space on Med Help.  

Feel free to discuss the product, but please don't post their URL in the forum.

Thanks!

Cindy Thompson
Med Help
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