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Hep C Discussion Forum -> On Treatment -> ? Forum Addiction
Post Info TOPIC: ? Forum Addiction
Margo


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RE: ? Forum Addiction
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The doctor can listen to your complains and prescribe something from the books or even better tell you that I've heard of that complaint but there is nothing can be done to help. On forum I get to talk to people who feel and experience what I do, daily. I am on forum daily, looking for advise and answers which I trust. We are in the same boat here, we help and support each other and that helps me go one day stronger, knowing I'm not alone.

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Geno 1b, relapsed in 2009 a week before my treatment was to be over. Started triple therapy on April 28th, 2012. UND at week 4,8,12,24,3 months post tx.
Shep


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I love this forum--it has been a life saver for me!! I have mentioned it to my doc--who I adore--but he was somewhat chilly about it. So I don't mention it anymore. Thank-you all for being here!

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
JIme


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Hey Mallani,

How are you?

I mentioned the forum ay my clinic and got mixed reactions from different people.  My main Dr. said it's a good source of info most of the time but be careful what you take as gospel.  Makes sense to me.

As far as an addiction, well, if your not a Type "A" person yet, you will be soon....lol.

We love discussing numbers, different senarios, side effects, vitamins, herbs, drugs, alcohol, diets, work, play, sleep, bowel movements, relationships, family, friendships, saddness, happiness, hope, love, children, grandchildren, and future plans. Oh, and a little bit about Hep C and SVR too.

This place has been a life changer for me. I'm lucky to have found it. Enjoy!



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
davesf


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My doc knows about the forum and is fine with it.  I think he understands that the more I educate myself the better.

I'm also very diplomatic with my inquiries though.  Typical: "From what I've read, blah, blah, blah.  Am I understanding this correctly?"



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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
hrsetrdr


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To all, here's the deal in a nutshell: medical staff feels threatened by "alternate" sources of information regarding medical treatments, they much prefer to be the sole source of information.  

To be fair, it's the medical people involved in your treatment that will be held accountable in a potential lawsuit, and not someone/some website out there on the internet.

I found out really quick that my gastro doc has this defensive attitude, so I don't say a word about anything I've read about; my NP is a bit more receptive but when you consider that my health care provider(Kaiser Permanente) will withhold certain lab results, well...that right there shows that they as a corporate entity do very much view the doctor/ patient relationship as more adversarial than that of a "partnership"...as portrayed in their TV advertisements.



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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
Scout


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There are worse addictions. To much dependence on any one thing isn't always healthy.



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Geno 1a, Viral load at 2 4, 8, 12 and 16  weeks, UND, Triple therapy Incevek done,   Peg & Riba Done, UND and making plans for the future!!
LUV2RYDE


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Yeah I mentioned the forum to my dr and he said those damn things...I looked at him and he is a great dr...and I said ya know what my friends on the forum have gone thru or are going thru tx and know exactley what the journey is like. All of the medical research and info doesn't do jack for me. I like to hit things head on and these people know thier stuff! He smiled and my bf said dont get her started...lol.



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Geno type 1A Started Abbott clinical trial mid Jan 2013. :-)

Viral load when I started this trial 4.75million  Went 12wks on placebo and started real meds on 4/5/13 after 1wk  on real meds 25 after UND @3wks,6wks.w00t: Done trial 6/27/13 and still UND.

 
Greg


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Hi mallani,

When I went through treatment, this forum was my lifeline, my sanity, my confidant, my best friend, and it still is, even through I'm a Non-Responder.

I still check this forum everyday, and message the friends that I have made on here, and I even add the odd comment when I feel it could provide some help. No I'm not fixated, I'm grateful.

Slay the dragon! anyway you can. stuff the doctors their not doing tx and feeling the sx's, you are and your not alone.

Greg



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The mind is like a parachute it works best when it is open. "The Dalai Lama" My blog: http://greghcv.wordpress.com/
Genotype 1a, started tx 1st Feb 2011, for 48 wks. Week 24 PCR 26/07/11 Non-Responder
New TX start date 12th Sept 2016 Harvoni x24 weeks.  VL 7.4 Mil. Week 4 "Undetected"
bauhaus76


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me too guys! i keep looking at the forum and what people have to say! my DOC( that cold blood no feelings at al venous snake) says im getting paranoid because people on the forums are to dramatic she says....i just feel like shooting her with one of my peg injections sometimes so that she knows first hand what we are here talking about!!! glad i found you people...this is getting harder and harder on me!!! good luck to you all!!



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hep c 1a on triple therapy with incivek UND at week 12 ,week 24...going for 48 weeks.
krowdog


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mallani wrote:

 

Any thoughts- is it possible to get fixated on this ?

 

Yeah, I got fixated too. That's a bad thing?

Let's see:

A support group to help us through one of the toughest things we'll ever do...

A place where we can learn vastly more first hand information than possible anywhere else...

A place where people are ready and eager to help with suggestions on things that have helped ease the sx's...

And. really just a bunch of interesting, good natured people...

We ALL kind of fixate on this tx, our health, etc...and I think that's a good thing.   When the time comes, the fixation will leave.

Let your doc be a doc...not a spiritual advisor ;))

Brad



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(Geno 1a, Incivek Triple Tx, 6 month post TX - 9/20/2012 = SVR!!!)
mallani


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Saw my Doc. today. After my questions he wondered whether I was spending too much time at the Forum. My chief complaint is that we do not have sensitive VL tests here in Oz. The best we can get is <15 TND and I'm probably getting paranoid, but I would rather it was <5. I told him I logged in 2 or 3 times a day, read the posts, and posted if I felt it would help. He thinks I spend too much time thinking and worrying about VL and SVR, but I pointed out that I was virtually housebound from fatigue, and needed support from fellow sufferers. He was not keen on getting a VL at 16w but I said I needed all the reassurance I could get. In Oz we are only allowed 3 VL's a year through Medicare, so I am paying myself.

Any thoughts- is it possible to get fixated on this ?



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
jan


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Hello Mallani,  I reached SVR 2 years ago now and YES I was fixated with the forum but without it I would not have stayed the course. Do whatever it takes.  The forum for me was a big positive so please don't stress over it.

Good luck,

Jan x

P.S. As you can see I still look in, that's because I care and want to help others to clear this virus.  That's a good thing ;) 



-- Edited by jan on Friday 22nd of June 2012 08:09:03 AM

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