me too... tried tx and it did not work i am stage 2/grade 2 and just taking milk thistle now...
Hi Jane, I'm open to alternative treatment -- how can I contact your doctor in Italy?
Kittyface
Yes I had HCV-RNA (PCR) tests - sorry for not bringing it up, it was the one thing I had in my favor. Baseline was 8,650 IU/Kl or 3.94 log. Test on 10-2 came back Not Detected (<50), Had a HCV-TMA test on 11-20 which also came back Not Detected (<10).
Dr. tried to convince me to go back on the Peg/Reb Tx following the rebound in labs. I disagreed, my logic being: potentials benefits no longer outweigh risks of contraindication, and why not just get HCV-RNA tests routinely and if no sign of relapse why punish my body (and MIND) any further.
I've listed a couple web sites below for reference material.
https://www.hepatitiscfree.com/appieshop/index.cgi?mhhepatiSTORE:CKIE:home+
http://www.mayoclinic.com/health/silymarin/NS_patient-milkthistle
Hey, I for one am very interested in your input. Just "feeling better than I've felt in my entire life" counts for something! Shoot, I could go for a little of that!!! This board tends to be more than a little pro SOC but most agree that current treatment options pretty much SUCK. If some alternitive treatments can improve liver function, hinder, halt, or even reverse damage, well that may be worth pursuing. Cure is a very strong word, one that even successful treaters seem lothe to use. I mean the word "cure" doesn't have an "s", an "r" or a "v" in it. Alternitives may buy time for those of us who are hoping for some improvement on documented treatments. The problem is finding someone we can trust for advice. There are many "snak oil " merchants out there. I seriously doubt that your 80 year old Italian Dr. is one of them. Hey, get my liver #s in order, reduce my viral count, stop the dragons' advance, make me feel good again, ---I"LL TAKE IT!! (for now, what we all want is a CURE)
I would have done exactly what you did. As long as your PCR's are showing UND repeatedly, why ingest this ****? I'd do the same thing, use the alternative options and do a PCR several times then at one year if it remains UND,you beat it. I guess his logic is that the virus must be hiding or something? I'd tell him "doc, if it ain't broke don't fix it"
Maybe it is just that he has not seen this happen to anyone else so he doesn't trust it, but heck, you have PCR's to prove it and that is that! Sometimes doctors aren't as open to miracles happening as they should be!
I have heard stories of people showing a viral load after finishing tx and then having it completely disappear when they are tested later on and they remain SVR. Maybe the IFN was able to train your system and now your immune system has conquered it or maybe it's the supplemental support added to it, who knows. That is so wonderful! After all you have been through, you sure deserve SVR. I hope to join you soon. Im sure all the positive health efforts you are making are good for your overall health. I know HCV did get me on the healthy eating wagon. I hope you continue to visit the site and keep me updated on how you are doing. Such an interesting story you have. Take good care of yourself, it's nice talking to you.
thanks so much for the sites!
Today was on the computer phone with my doctor in Italy.
He may be old in years, but this guy is sharp sharp sharp, his father is still alive, a little over 100 !
Thankfully he has much patience with me. I've been so freaked out the past months over this. He calmly always tells me that I will have a negative test to HCV, I just have to be patient, and understand this will take more months. He is not just talking about a 'lowered viral lode and better ast's and alt's, he says ERADICATED AND NEGATIVE.
He reminds me all the time that he has MANY hep a b AND c patients that he has cleared, and he checks them yearly to make sure they remain 'negative'. I have so many mood swings about this, understandably so because my doctors here completely scoff at what I am doing, and of course I have a new hepatologist that I have to face on Monday, I'm nervous about meeting him at all, going through the whole 'story' again, and then of course I have to tell him that I am on this 'treatment'.
Well? The facts speak for themselves. When I said I feel great these days, I was not exagerating at all. It is unreal how 'normal' I feel. And although I still have elevated ast's and alt's, viral lode high still, bottomline I have come down from 1000000 to 119000. My doctor says next stop viral lode 600. That is our goal, and he simply expects it. I'm just curious, IF and when I come down below 600, would that help support that I really WAS getting better with some of the nonbelievers on this board?
I don't think a viral lode would come down that low on it's own, right? I hesitated for a few months to post here, I didn't know how I would be 'received' with my homeopathic bag and old Italian doctor and all, the whole thing does sound rather out there.
But the only reason that it doesn't seem that out there to me is because I'm living it.