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.
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
_/|\_
my fibrosure was as a possible alternate to biopsy but as it's possibly middle range score (0.65) a biopsy will be scheduled ... if the fibrosure was accurate, because i'm stage 3, and that's high, and it's accurate in the high and low but not middle range, then i imagine i'll be offered immediate treatment, probably triple combo, rather than let it progress to stage 4, decompensated liver, etc.
while waiting, am checking out any clinical trials 'cos i'm sure i'd be a poster child for success.
am aware too of some replay of initial panic mode (fear) from my initial diagnosis, 20 years ago, and the sense of wanting to know everything all-at-once (greed), and mindfulness helps deal with them (recognize as they come up, and let the bubble burst before dithering into a fugue).
am also researching to find a hepatologist for a 2nd opinion.
breathing in, i heal myself
breathing out, i heal you and you and you and you