I looked into it when I first found out, but wasn't convinced it could help. In fact, I believe it can cause skin discoloration (bluish), and my doc (who is very open minded) advised me against it.
quack medicine it is called by some. it offers only testimonials and anecdotal evidence. No bloodwork or studies to document their claims.
why infergen? your second try? please share your stats.
So about how long you have had HepC, how can one know really how long they have had it. I said 12 years, cause that is when it was found in a blood test. But, i did also have a blood transfusion when i was born, i was a rh factor baby. I have been exposed to every possible way of getting Hep C (tattoos, piercings, IV drug use, and blood transfusion) just don't know which one was really the cause. That leaves me wondering, how is a girl supposed to know when you do crazy things in your younger years. Therefore, i just go with the year at which we first noticed it.
Wow. That does pose some questions. That does change your cirumstances.... I'd still do a lot of further testing - to try to find out if youre disease is progressing. I'm thinking of taking another biopsy in the coming year, some other tests, to see if there is progression, etc. There are some of us, prob because of a variety of reasons, that just don't have a very progressive disease status, at least for now. This board doesn't have a huge amount of members, so you can't get a good cross section feel for how the disease plays out in a variety of people. Janis does have many more people there, and there are more than a few like me, who've had it a long time and still have low liver damage. I just don't know how I would call it in your case, I'd still do plenty of investigating, youre still a 0-1. But you might still "consider" treating, like I said, I dont know all your circumstances, only you do. This decision will be totally up to you after you do all our testing and investigating.
Hopefully, youre following an exceptionally healthy lifestyle now, the food we eat is very important, it's an element that your liver has to deal with constantly. Plenty of veggies, fruits, nuts, seeds, water, if you eat meat, low fat and not too often. Often, if youre liver is fighting off a disease, it needs as many nutrients as it can get, like the rest of your body. If I were you, and of course I'm not, I'd also look into a good vitamin herb regimen to help out with the nutrients factor, and the oxidative stress. This is also controversial with many, but I usually see the people who are really adamently against these regimens haven't ever taken them themselves or don't know much about them, or maybe had a bad experience because they didn't know much about them beforehand. Exercise, meditate, be MS. Healthy! whatever you decide to to do. Be well.
Colloidal Silver has been offered as a quack remedy for countless conditions.
It is a nasty, toxic,medicine show rip off-don't even thimk about it!
If you do want to know more there used to be a page on the Quackwatch site.
Sorry, never tried it...I'm afraid I'd have to get a giant tub of Tarnex and soak myself at the same time...
It is funny that you mention all the stuff about being healthy and getting on suppliments, because i actually have an appointment this friday at the naturopathic doctor to discuss herbal suppliments i could start taking when i am on tx.
I am on top of that one:) :)
Thanks again for your opinion. Your input, as well as, all others, are greatly appreciated and will help me in making my final decision.
An 80% clear rate for geno type 1 at 12 weeks??????? I don't think so.
Forseegood made some good points about different discussion groups having different biases.
Especially when you're new to this whole thing, it's a good idea to visit different discussion groups to get as much balanced input as possible.
And just keep in mind that all of us are layman/laywomen and not doctors. There's a lot of priceless information in these discussion groups that's hard to find anywhere else. There's also a fair amount of misinformation. It takes a while to sort out what is what, so always best to check, double-check and even triple-check anything you hear that might result in a treatment decision. Regarding, herbs, vitamins, etc., again you'll hear from those pro and con.
Those "pro" are usually very pro and those "con" often very con. All I'll say is run everything you put in your mouth by your treatment doctor. Some things are OK off treatment but controversial while on treatment.
Hi Shannon, glad you landed here. Yeah, the old "treat or don't treat question with low to no liver damage question," always a can of worms because there are so many people who believe so adamantly pro and con. On this board mostly pro, on some other boards, mostly con. Youre doc prob said it was up to you because he's figuring its a toss up too. Most docs feel that way with someone like you, or you'll get the docs that say treat anyway, under any circumstances, or dont treat at all with your stats. Which makes it even harder for us laymen types.
One thing you'll see is that people are mostly subjective in their viewpoints...which is only human nature. If you speak with a person who has cleared on treatment, sometimes a person who has had to do treatment twice, they'll most prob be on the go ahead and jump on treatment side. If you talk to a two time non-responder or relapser, and a person who has some permanent sides, they'll most likely not be so apt to tell you to go jump on it and tell you wait for the better meds. Been going to a few boards for quite some time and that's what I mainly see. A lot of people will just stay out of it because it is such a toss up for someone like you.
Now there seems to be some controversy about the "permanent sides" being just a side effect of the disease itself and not the treatment. Uhhhh, I beg to differ. While that could be the case for many, that's not always the case for some. I've known people from Janis and elsewhere, and I spoke to them before treatment, and they were perfectly fine in their mental and physical capabilities and they ended up getting permanent sides from the treatment itself. Youre not going to tell me that someone who was perfectly okay before treatment (of course they had the hep c and that isn't good, but they hadn't suffered any significant damage from it) and then had permanent sides right after treatment - even cardiac and blood pressure probs, auto-immune probs, eye and hearing damange, etc- anything from neuropathy, very intense arthritis and muscle pain (and that phenomenon is prob because they had some of these issues in their systems lying dormant until a much later age, and the treatment itself brought it on prematurely) and yes, brain fog that lasted for 3 years in one person's case, then went away thank God. I know some others where it hasn't gone away yet. Many people get thyroid damage but I agree if it's a toss up between liver damage and permanent thyroid damage, I'd go for the thyroid, they can treat the thyroid - "if" I was in danger for liver damage with a higher biopsy grade and not so good labs.
People who are exhibiting a progression in their liver damage, and biopsy at a 2 or more, and have had the disease for a long time, yeah go for treatment, it's prob your only option. Youre taking chances not to in most cases. We don't know what the exact window is for these new drugs, and some of them are quite promising and I'm not in the camp that says that they won't come around for 10 years as I've heard some say. My doc says 3 to 4 years and he's big about going to conferences and knows a lot of the reseachers and scientists and docs involved with some of these new drugs. He's kind of a Grand Pooh Bah of hepatologists around here, he he he.
I always hate to bring up these issues of long lasting sides and such, because so many are treating or about to treat, but I think you need a fair and balanced analysis to make your decision for someone like you, and when I see more and more people saying the long lasting side effects are mostly due to the disease itself in most cases I just have to pipe up, knowing what I know. The disease itself caused all these things for these people just in the year or so they had been taking the meds? That's a little bit too much of a coincidence for me. Anyone making a decision in your case should get all sides and opinions of this issue, I feel. And yes, there are the people who get extra hepatic issues from this disease itself, I'm not saying they are not out there.
In my own case, I've had this disease for almost 30 years, and I'm now thinking about doing treatment, I've put it off since diagnosis in 01 for a variety of reasons, maybe I shoud of jumped on it right away, maybe not. I suffer from depression since I was a kid, but I have it under pretty good control and have had it under control for years and years. My labs are pretty good and I biopsied at a 1 about a year ago. My doc wants to see if he could get me in a couple of different trials first, and I have a pretty good shot with his connections and me being treatment naive. I would rather take the combo treatments out now in trial that do not have the riba, but that's just me. I presently take a number of vitamins and herbs and they do make me feel better, I have proved it to myself by me going off of them for a few months about a year ago, I'm never going off of them again until I clear this puppy, and then I'll still take some of them. My inflammation even went up when I went off of them, and went back down when I started taking them again. And no, I don't expect them to "cure" this virus for me, but they may just have kept my inflammation down till I do whatever I'm going to do, and that's a pretty good trade off for me. I'll take what I can get, ha ha.
There is a new phenomenon now that wasn't around when I was younger, I'm 52, and that is they are testing for this disease now and much younger people are being tested so you have all these young people who have only had the disease for 5,7, 10 years or so...like you. Snook, (thankfully, he cleared) the person who has been talked about, is different than you, first, he's male, and that is a factor unfortunatly against him, estrogen seems to have a protective effect for women against the disease. Second, he's had this from birth, for about 27 years, that is another big factor. Length of disease time. If I were one of you young people, knowing what I know now, and I biopsied at a 0 or 1 and had perfect labs and health, and had this disease for a relatively short amount of time like you, no way would I take these drugs. No way. In my view, a lot depends on how long youve had the meanies, they take time to do their dirty work. In most things I've read, at least 15 years for most people, mostly longer if you are female. Many people don't have it start to do damage for 20, 25 years, 30 years. I think....you've got room to wait for better, less toxic drugs. Now if youre a very sensitive type, and can't bear the thought of this disease in your body, then you have to factor that in your decision.
We just don't know the long term effects of these drugs on people, not yet anyway, even those who have cleared, they just haven't been around that long.
So if I were you, I'd factor all the info you find, the info your doc tells you, all your research, people's anecdotal opinions but mostly studies and research before I make a decision like this. And factor in your own personal personality type, etc. This is a mostly pro treatment board for someone in your case. And yes, there are really good things about treating at your age, youre prob going to have a better chance of clearing with your stats, but consider everything in your particular circumstances. I know it's not an easy decision, we all know that. Don't just listen to 5 or 6 people, me included. Good luck to you. And remember, try to stay as positive as you possibly can, there are many, many people that would love to have your stats.
was waiting to hear your weigh in, agree with most of it. This stuff can be sooo subjective. I also agree that you have to watch what you take on treatment as far as supplements, herb, etc. I'm not sure that a naturepath would be the best one to talk to about that, not to say that there aren't some good ones out there who are familiar with treatment, but I'd go to an MD for that one.
Hopefully an MD that is familiar with vitamin herb regimens, mine is to a point, and I hear that Dr. Schiff and Dr. Gish are too. I'd be wary of a an MD that flat out says they are all poppycock (what a strange word) he/she probably doesn't know beans about them...or will bother to learn about them either. One thing I will say though, some of these good people on these boards keep up with the new trials, research, etc. a bit better than some MD's I've spoken to. I guess there are just so many hours in the day and they are pretty busy, but it's always refreshing to find one that bothers to keep up and really cares about us. I heard one woman the other day say her MD told her not to kiss her husband cause he's got hep c. Guess they are giving medical licences out at Wal-Mart.
Man, that is a doc ignorant to facts. It is disturbing to even hear that. Good post above, the permanent sides issue is not an area I have studied, but I have heard both sides of it. Frankly, if you had no sides before, but many after treatment, it is hard to dispute. It seems some have it, some don't, but thyroid issues, diabetes, etc. are all things I have heard. That is why I hope I wouldn't have to take interferon, but hopefully less of it would lead to less of a risk of permanent sides. I was discussing the interferon issue with someone at VRTX a while back, and he told me that the prolonged use of interferon was the potential culprit.
Of course, it remains to be seen what the long term sides of the newer class of drugs will be, if any. I think the longer you take anything, the bigger the potential problem, and that is another reason a shorter treatment course could be significant.
Maybe someday we get to more individualized treatments based on our own chemistry instead of a one size fits all deal.