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Post Info TOPIC: HEP C 1, 2, 3


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RE: HEP C 1, 2, 3
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 I see your point Dave and it's a shame, but as RC said if you don't want your information out there then don't put it out there. You are free to register under an assumed identity with anonymous email address if you desire. This is the e-world that we communicate in, with it's pro's and con's. That site is no different than thousands of others that collect and distribute our information, but when we access it with our own security in mind we can benefit from the information they offer. Any time your online, post only the information that you feel comfortable with the world knowing, run an active anti-malware program and don't open e-mails from unknown sources. JMO



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57 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Har /SOT 7-25-2015/UND@EOT,+12,+24,+52,+100wks = SVR-115

Mike

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Ya, I'm a total idiot and a fool for even harboring the thought that the American Liver Foundation forum for Hep C wouldn't sell the information that I posted there ... guess they set the hook just at the right time, right after I got the news I had Hep C.

I never posted any more at the ALF Inspire site than some of what I and others post here every day ... but I'll tell ya I sure didn't expect the ALF to do what they are doing. And I will never believe what they are doing is a good thing.

You can defend that site and the ALF all you like but that doesn't change the fact that they are taking advantage of people when they are down and most vulnerable. And you can blame fools for being taken advantage of ... but that doesn't make it right to take advantage of them.

IMO gaining and keeping the trust of Hep C patients like us, especially those who were recently diagnosed, far outweighs anything you can find at that site.

That's why I'm here not there.

People here will make up their own minds about going there but at least now they have a clue what that site is all about.

 

I rest my case,

unless, of course, you'd rather I continue ...

silence ...

more silence ...

Heck with it I'm going to continue ...

 

 

 

 

 

 

 

Ha, ha, ha ... April Fools! party.gif

(Wasn't foolin' about the Inspire site though)

 

 Signed,

The Rabid Dog



-- Edited by Linuxter on Friday 1st of April 2016 07:43:24 AM

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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 

Tig


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Hey Dave,

I appreciate the information. I advise anyone that gets on this box with a screen, to be very cautious of the personal data they volunteer on any website. I don't encourage anyone to do something they have any concern with, especially cyber security. Seems wherever you go online these days, there is somebody lurking in the shadows waiting to pounce on your personal data. Don't give it to them and keep good malware protection active on your system. 

I want everyone to feel safe here, we are very conscious of your privacy and security. Thanks for your advice and concern for our online security. Always review the privacy and terms of service before clicking on the dotted line. 



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Hi all.   I went and took a look at this site.    I.M.O  the benefits far outweigh the risk.  Lots of good info, if you don't want it out there. (Personal stuff) don't put it out there!   RC



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 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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Tig, you might want to read the fine print there (at Inspire) sometime, it's somewhere in the bowels of the site.

I don't have a link, nor do I want to go there ever again but it might surprise you when you read what I did, the person I spoke with there (via PM) that confirmed that they are a for profit corporation that does data mining and they sell that data was a programmer there, they are the one that flat out said "I can understand why you wouldn't trust us". This person was quite forthcoming because we spoke of programming and security so we had a bit of a rapport.

 

Like I said "This is why I love this place (Hepcfriends) so much, it's the REAL DEAL."

I'm very thankful to have found this site ... Just what the doctor ordered smile

I've donated before and I'll donate again to help keep this place the wonderful place that it is.

Speaking of which ... Hey Everybody, help keep this place going ... go to the bottom of the front page and find the contribute button if you haven't already and if you have Thank You!

 

Dave

 

 



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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 

Tig


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Thank you Jimmy. 



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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Tig


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Hey Dave,

I've been a member of Inspire for quite awhile. My participation is limited, but I do respond to the occasional post there and haven't experienced any issues as a result. Our forum here doesn't accept advertising, rather we are self funded, either through donation or by the administration. I know some support groups pay their costs in the manner you describe. We won't ever consider that. Thanks for your input!



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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I got to agree with Dave on this one.

 

OMG !



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Thanks for the info Tig.

Just a WARNING about their support group "Inspire" though ... read the fine print closely if you join THAT forum ... it's a "For Profit" data mining site ... they're in it for the money ... they sell data culled from posts there ... once I realized that I inquired further with the mods there and they did not even try to deny it ... one of them even said "I can understand why you wouldn't trust us" ... no denying that they are there to make money. I deleted my posts, unjoined and left ... I was pretty shocked what they were up to ... and I'm very surprised the American Liver Foundation is associated, involved or condone that. (Somehow I expected some degree of privacy from a forum for HCV, the last thing I expected was to be exploited)

This is why I love this place so much, it's the REAL DEAL.

Please don't let that detract from the link Tig posted though, lots of great info there ... just be aware of the above since the site links to Inspire as a support group.

 

Dave



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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 

Tig


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1. Diagnosis, 2. Treatment and 3. Support. Take a moment to bookmark this website.  It's loaded with useful information on our unwelcome visitor and how treatment has improved along the way. It's provided by the American Liver Foundation.

http://hepc.liverfoundation.org/



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Tig

61 yo GT1A - 5 Mil - A2/F3 - (1996) Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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