Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
LopLop
Greetings
Here's a quick sketch : who I am, where I'm at, and questions as to whether what I know is up-to-date, incorrect, etc. (Maybe you might enjoy comparing my knowledge base to yours?)
Had flu-like symptoms about 20 years ago, worsening (after trip to mega-polluted China) into vomiting, migraines, passing out, and severe fatigue. HMO for 2 years consistently said, "We don't know." (Got diagnosed, by a fluke, by an intern.) "C" was just emerging from wings, of non-A/non-B.
Test results placed me in 20% of HCV population: normal enzymes. I had a liver biopsy which scored 1; an outside 2nd opinion said the score overestimated & I was more like a high 0. I opted for "tincture of time," rather than treatment ; + alternative protocols. (Sample protocol, below)
Monitoring with biopsy every five years, last one was 0. Was overdue for one, as the HMO wanted me on treatment (Incivik, I think) but opted instead for an ultrasound, at best.
My symptoms have all gone down to practically 0.
Please correct me if I'm wrong (or on thin ice) on ANY of the following. My sense of it is that if I can afford to avoid treatment, I might save myself possible side effects which might be worse than the cure. (Everyone's different, it's true.) I've personally heard of cases (friends) where the patient clears the virus but then gets fatal liver cancer . (Why is that? Is it that the interferon wipes out the body's natural interleukins? Hampers the thyroid?
and would a strategy such as a protease inhibitor NOT bundled with interferon *not* have those sides ?)
Major alternative treatments I've heard of include Royal Rife (electronic zapping) and oxygen chambers: but do they work completely?, or : might the remnant virus be a stronger mutant which replicates and becomes even more virulent and nasty and hard to beat ? (If so, that's why I've avoided, say, the oxygen chamber.)
Have tried quercitin for a couple months; then blueberry extract; also naringenin (sp?). No effect: or might these underly the reason that now, after 15 years, my virus is now ratcheting up ?
Anyways, my viral load is about 12M, enzymes about 144, and am turning 65 (so medicare kicks in) & I've left the HMO and started with a hepatologist, who ordered a Fibrosure. (This test is good for upper or lower but not middle range.) I scored in middle (0.65) so they want a biopsy -- which I'd wanted anyway.
I'm still in shock (altho' the enzymes had been ratcheting up for the first time a year and a half ago) : that I've gone from 0 to either 2 or 3 in five years (using the 0-4 grading). But it's a slow virus until it's not.
I'm painting a picture before there's an easel but I'm hoping I'm 2, and can afford some more time (until there's, say, an unbundled protease inhibitor). IF it comes out I'm 3, the hepatologist will want to put me on treatment : ( could I opt for being a lab rat for a clinical trial, or would those only be for nonresponders ? )
I've probably hosted the virus for 45-50 years; am geno type 1a. Am, like I said, 65. And here's my protocol ---
Diet: whole grains, no fried, no pesticides nor GMO, very little sweets at all (or spices, or garlic), vegan (but take whey). Simple but strict.
Exercise: swim or walk 30 minutes several times a week. Practice mindfulness, daily (ideally, 24/7 : like, right now : breathe, you're alive ; breathe, you're online. And prayer : breathing in, I heal myself ; breathing out, I heal others.) Am starting Qi gong.
View: Even what's uncurable can always be healed. Energy follows attention : I have a disease-threatening life (not vice-versa). I like Jean Shinoda Bolen's view (in Close to the Bone): this life-threatening illness puts me close to life, to living each moment fully: and more compassionately, for myself, & others. Laughter is always Rx.
Herbs, supplements: currently enjoying the Stephen Buhner herbal protocol, + a Chinese doctor's herbs which I decoct + his compounds (1 for hepC, 1 immune booster, and 1 for quality life) , + the usual suspects : 1200 mg standardized Milk Thistle, ALA, Selenium ; + Glutathione, C, B, D, etc. And I liked DNCB but it's no longer available.
And, once again, support group; beloved community. I won't keep you glued to your computer screen, and pardon me if I read but don't reply verbally to everything.
I'm very grateful for this space. Thank you.
palms
joined
_/|\_
Here's a quick sketch : who I am, where I'm at, and questions as to whether what I know is up-to-date, incorrect, etc. (Maybe you might enjoy comparing my knowledge base to yours?)
Had flu-like symptoms about 20 years ago, worsening (after trip to mega-polluted China) into vomiting, migraines, passing out, and severe fatigue. HMO for 2 years consistently said, "We don't know." (Got diagnosed, by a fluke, by an intern.) "C" was just emerging from wings, of non-A/non-B.
Test results placed me in 20% of HCV population: normal enzymes. I had a liver biopsy which scored 1; an outside 2nd opinion said the score overestimated & I was more like a high 0. I opted for "tincture of time," rather than treatment ; + alternative protocols. (Sample protocol, below)
Monitoring with biopsy every five years, last one was 0. Was overdue for one, as the HMO wanted me on treatment (Incivik, I think) but opted instead for an ultrasound, at best.
My symptoms have all gone down to practically 0.
Please correct me if I'm wrong (or on thin ice) on ANY of the following. My sense of it is that if I can afford to avoid treatment, I might save myself possible side effects which might be worse than the cure. (Everyone's different, it's true.) I've personally heard of cases (friends) where the patient clears the virus but then gets fatal liver cancer . (Why is that? Is it that the interferon wipes out the body's natural interleukins? Hampers the thyroid?
and would a strategy such as a protease inhibitor NOT bundled with interferon *not* have those sides ?)
Major alternative treatments I've heard of include Royal Rife (electronic zapping) and oxygen chambers: but do they work completely?, or : might the remnant virus be a stronger mutant which replicates and becomes even more virulent and nasty and hard to beat ? (If so, that's why I've avoided, say, the oxygen chamber.)
Have tried quercitin for a couple months; then blueberry extract; also naringenin (sp?). No effect: or might these underly the reason that now, after 15 years, my virus is now ratcheting up ?
Anyways, my viral load is about 12M, enzymes about 144, and am turning 65 (so medicare kicks in) & I've left the HMO and started with a hepatologist, who ordered a Fibrosure. (This test is good for upper or lower but not middle range.) I scored in middle (0.65) so they want a biopsy -- which I'd wanted anyway.
I'm still in shock (altho' the enzymes had been ratcheting up for the first time a year and a half ago) : that I've gone from 0 to either 2 or 3 in five years (using the 0-4 grading). But it's a slow virus until it's not.
I'm painting a picture before there's an easel but I'm hoping I'm 2, and can afford some more time (until there's, say, an unbundled protease inhibitor). IF it comes out I'm 3, the hepatologist will want to put me on treatment : ( could I opt for being a lab rat for a clinical trial, or would those only be for nonresponders ? )
I've probably hosted the virus for 45-50 years; am geno type 1a. Am, like I said, 65. And here's my protocol ---
Diet: whole grains, no fried, no pesticides nor GMO, very little sweets at all (or spices, or garlic), vegan (but take whey). Simple but strict.
Exercise: swim or walk 30 minutes several times a week. Practice mindfulness, daily (ideally, 24/7 : like, right now : breathe, you're alive ; breathe, you're online. And prayer : breathing in, I heal myself ; breathing out, I heal others.) Am starting Qi gong.
View: Even what's uncurable can always be healed. Energy follows attention : I have a disease-threatening life (not vice-versa). I like Jean Shinoda Bolen's view (in Close to the Bone): this life-threatening illness puts me close to life, to living each moment fully: and more compassionately, for myself, & others. Laughter is always Rx.
Herbs, supplements: currently enjoying the Stephen Buhner herbal protocol, + a Chinese doctor's herbs which I decoct + his compounds (1 for hepC, 1 immune booster, and 1 for quality life) , + the usual suspects : 1200 mg standardized Milk Thistle, ALA, Selenium ; + Glutathione, C, B, D, etc. And I liked DNCB but it's no longer available.
And, once again, support group; beloved community. I won't keep you glued to your computer screen, and pardon me if I read but don't reply verbally to everything.
I'm very grateful for this space. Thank you.
palms
joined
_/|\_
I've never had treatment, but will be starting triple therapy very soon, on the advice of my liver specialist. Yes, the newer treatments that are still in trial without interferon have far less side effects, from all I've heard. But my doctor thinks I may not be able to safely wait for FDA approval on one that I can take as a post-transplant patient. And right now, there is no trial in my area that I can be included in.
I'll be praying for you as you and your doctors, with The Lord's guidance, make decisions as to what path to take. Thank you for your post, and please stay in touch. Marilyn
My profile & journal tell of my adventures since being dx'd hcv+.
Welcome - interesting post.
Can't respond to all points, but I would guess that the recent "ratcheting up" of your virus could be age related. I have heard others report that in their sixties, the virus does progress a bit faster. I would think that you still have time to wait for the new drugs in the pipeline, though. As far as clinical trials, there are many different ones, and they focus on people in a variety of categories. They are certainly not limited to non-responders.
I was interested that you brought up oxygen chambers. A few years ago, I had a case of sudden onset deafness in my right ear. A round of prednisone brought me back close to my normal hearing, but I wanted it all back, so I tried an oxygen chamber - one or two hours a day for several days in a row. It worked, and I have often wondered about the possible HCV applications. I don't think it would cause any mutations in the virus.
All the best.
In my 30s I was diagnosed with Rheumatoid arthritis. Many many meds and several surgeries later.... (you can read it all on my blog:
http://RA-SS.blogspot.com .... but my avitar is my real hand x-ray and BOTH hands are deformed) ....anyhow, about ten years ago one of the blood tests I was having done regularly to monitor the effects of my RA meds on my liver - turned up high enzymes.
Doctor did further testing and then called me at work one day and said something like he had news that he "didn't know how to tell me." His exact words! I figured i was dying, for sure. He told me I had Hep C. I was unfazed as i had no idea what it was, so I immediately started researching on the net.
Based on the causes, I figure I got it in the 60s as a result of casual drug use. That means it's been in my body likely 45+ years and I JUST recently found out it might have CAUSED my RA! (I also have Sjogrens Syndrome secondary to the RA). I am thus actually grateful for my RA because without it I might not know i have HCV.
I was seeing a hepatologist who did all the testing and my numbers were good an low and he told me to watch and wait because - even 10 years ago - he told me that new non-interferon treatments were on the horizon and i should hold out as long as I could for them as long as I was showing no liver damage.
I came here to DS and many said not to be so laid back about it. As a result, a couple of years ago I switched to an Infectious Disease doctor who and old timer recommended. I feel he's more thorough - although he said the same: Watch and wait...BUT, he was also very involved in clinical trials and said he would watch for one I could be on given the meds I take for my RA (Orencia by IV infusion, monthly and sub q self-injections weekly of methatrexate).
*** Two weeks ago I started a non-Interferon clinical trial. Boehringer Ingersoll. Details are in my journal here.
*** Last week I got the results of a Fibrosure and showed Stage 4 - severe fibrosis, so it looks like the trial came none too soon, even though my platelets and other scores are all GOOD.
*LOPLOP* - the good news is that those of us who can wait, we have good solid reason to do so! These new non-interferon drugs are on the doorstep of FDA approval!! And they are showing excellent CURE rates - far better than any the evil Interferon seemed to do!!
Others here can tell you more. I think Abbott is at the head of the pack, or maybe Gilead. And the BI trial I am on is a Phase III which means close to going for FDA approval. Many here seem to think by then end of this year one will be available. Like I said, others here can tell you more. But HOPE, real hope, for a cure without the awful side effects is coming soon. All ORAL. I take seven pills a day for 24 weeks!
A lot depends on your genotype. Do you know yours? If not, find out it will matter greatly what treatments will work for you.
We made it this far. The best is yet to come!
But it does seem to lie dormant pretty much and then speed up as we age... ,i suspect many new members of this club coming aboard in the years ahead...
I'm geno 1(a). The hardest, I'm told.
I think Nick (the actor) Nolte did the hyperbaric chamber for his HepC. Don't know if it came back.
At my initial visit with my new hepatologist (sounds like a snake doctor, right?), she said any non-INF bundle would be ... 3 years away. I'd love to go on a clinical trial if it were without INF, so I'll ask her what she thinks ... pre-biopsy.
Have recently read http://hepC-cured.org ... wondering about that.
Wishing everyone a wonder-full week.
Read the posts here that are all excited about gilead and other great results. people are getting CUREd and doing it without interferon.
And I am genotype 1 and I was considered a prime candidate for this study because I was genotype 1.
Get a second opin, bro.
nevertheless, even before I read your post, I began looking for a 2nd opinion. This gal took over the office of a doc who co-wrote a book with a traditional Chinese medical doctor, and oversaw transplants: doesn't mean she inherited his views.
Thanks for the reality check and corroborating my doubts, RASS.
p s
My friend Darlene Cohen had RA and wrote some kick-ass books on dealing with pain from a Zen perspective. (heard of her?) Helpful to me in dealing with my symptoms.
You found a great group of folks here with lots of first hand information, links, advice, support, friendship, humor and even some music thrown in.:):)
Glad ya found us...........just sorry you have to be here:(:(
WELCOME!!!!!!!!!!!!!!!
meditation is GRAST! Gets me through long MRIs and biopsies!
no grast,
... anyone else had a Fibrosure test, or been a "3" and waited ... ?