Hi Barry666 and hello to the gorgeous Holly!

Thanks so much for sharing your story. Such good news that you are on the pathway to the right treatment for you. I know how debilitating Hep C is and how wonderful it is to live without it. I wish that for you.

I'm looking forward to hearing how you are going from time to time....

Coral

Hi Dave,

65's not that old! It's not unusual to notice something going on when treatment is started and people's experiences vary. Usually things settle after a week or two when most of the virus has been killed off.

Although 65 is not that old, it is old enough that other stuff starts to happen and just because you're on treatment does not mean what you're experiencing is related to it.

Tightness in the chest is one of those things that worries doctors as it is a feeling patients get when there are problems with the plumbing to the heart - ie cardiovascular disease. Were you getting any of this before you started treatment? If so you should definitely get checked out by your doctor.

Here is an article from NZ Doctor Magazine from that trip, it is paywalled so just pasting in, no link

Aussie doc urges GPs to join a once-in- a-generation hep C treatment drive




This email address is being protected from spambots. You need JavaScript enabled to view it.
Friday 9 August 2019, 01:49 PM


Australian GP James Freeman says finding hep C patients to treat is getting more difficult and the help of GPs is urgently needed
The man behind Australia’s hepatitis C “buyers’ club” is urging New Zealand GPs to get involved in treating the disease, which he describes as one of the most rewarding experiences in medicine.
But GP James Freeman is also warning health decision-makers in this country not to follow the lead of the Australian Government by setting time limits on funding hep C drugs.
Speaking to a small audience at the RNZCGP conference in Dunedin at the end of last month, Dr Freeman described his personal experience of getting involved in hep C treatment.
His talk came just three days before the Ministry of Health and Pharmac announced that more than 2000 New Zealanders with hepatitis C have been treated with direct-acting antiviral Maviret since it was funded in February.
Australia spends $1 billion on hep C treatment
The Australian Government has committed $ 1 billion dollars over five years to tackle hep C. An estimated 230,000 Australians are living with the disease.
However, when asked by an audience member what Australia can teach this country about how to deal with the disease, Dr Freeman says, “What Australia can teach you is how not to do it.”
Finding and treating the first 25 per cent of patients is easy, he says – and after that it gets increasingly difficult. “It’s just going to get harder and harder. In Australia in the first year, we treated 40,000, in the next we treated 20,000, next year it’s going to be less than that. We’re going to have to work to find these patients.”
He says a relatively tiny amount of money was spent on awareness, and if New Zealand does the same “you’re shooting yourself in the foot”.
He says the health minister who championed the hep C funding in Australia was replaced by a new minister who gave it a lower priority. “I don’t think he understands that we run out of funded treatment in a year and a half.”
Pharmac says the current funding for Maviret in New Zealand isn’t for a fixed period. But Dr Freeman says it is still vital for GPs to find patients to treat.
“Everything needs to be done to wheedle patients out of the woodwork. People with hep C are going to die.”
Unorthodox methods to access drugs
Dr Freeman says hepatitis has a long history. It was known as far back as the days of the Roman legions, but it was during World War II when “hot blood” transfusions from person to person were common, that it spread around the world.
He met his own hep C “patient zero” in 2014 and he began to research what treatment was available. Drugs had been produced but they were very expensive. “They were the same price as diamonds, gram for gram. It really was your money or your life.”
After meeting a South African doctor who recounted how people had started importing generic antiretrovirals to treat AIDS in that country, and also inspired by the film Dallas Buyers Club, Dr Freeman decided to do the same for hep C, setting up the FixHepC Buyers Club to access generic drugs from China and India, which he tested on himself before treating his first patient.
As word got around more patients started knocking on his door. He “accidentally” treated the retired editor of the Sydney Morning Herald, and it ended up on the front page.
Within three months the Australian Government announced a funding deal for the drug Epclusa.
‘Once in a generation’ opportunity
Dr Freeman describes it as a once-in-a-generation opportunity for doctors. “It’s our first-ever cure for a virus. I think that’s fantastic.”
Some New Zealand GPs have been reluctant to get involved with hepatitis treatment, fearing it will entail a lot of extra unpaid work, but the pan-genotypic Maviret is regarded by the Hepatitis Foundation as relatively simple to prescribe.
Dr Freeman would like to see more incentives for GPs to treat hep C patients so it’s not something else they are being asked to do without recompense. “The Government needs to be realistic.”
However, he says being able to cure patients of a debilitating and fatal disease is incredibly rewarding and the gratitude shown by patients is unlike anything he has experienced.
“They’ve been crook for so long – it's like being reborn. There’s a brilliant opportunity to get involved in this.”

Hi Barry,

The good news is that Professor Ed Gane in Auckland is about to launch a clinical trial that will take in all the NZ Viekira failures and retreat them with Maviret + Sofosbuvir.

Please send an email to This email address is being protected from spambots. You need JavaScript enabled to view it. and we will get you connected so you can start retreatment ASAP.

With any luck you'll be cured by the time that next 6 monthly appointment rolls around.

Hello Hugh Fuve,

There is no doubt that it is possible to make some small changes to Hep C disease progression with lifestyle modifications, but these days, the single best supplement for Hep C is a DAA as it goes straight to root cause, rather than dealing with the issues Hep C causes.

Hi Dr James.
Sorry to respond this late but I dont use the internet much and I tend to miss things or not getting round to logging on for days. This is also my first experience of a forum which has been challenging and confusing!
To answer your questions, I had a 12 week course of Viekira (?), which was funded but it didnt kill the virus.I have suffered with depression and anxiety for about 30 years but with trial and error with different meds over the years I can now keep it manageable. However, by the end of the Viekira a different type of depression had built up hat I had never felt before, and the day of my last dose I was glad to see the back of the treatment as I was in a very dark place. Did the test 3months later and the Hep was still merrily waging war with my concrete liver unfazed.
The last funded drug that came out early this year, Maviret, but I didnt qualify for funded access to it. They have me now on a six monthly appointment whereas I was previously on a three. I can read between he lines on that and its not their fault, they simply cant do anything for me at present. Buying my own meds is just not an option for myself or my elderly mother or sister if I dared to ask them which I wouldn't.
I live in New Zealand sorry I didnt mention that. I will get someone to help me put the outcome of my appointment (end of Sept) along with the hieroglyphic numbers and letters from my blood test on here for you to decipher if you get a chance.
Thank you for your reply and apologies for my shockingly tardy reply Doctor James
Take care
g

I finished treatment for G4 with Harvoni in 11/16. I had Ultrasounds in 2013, 2015 and 2018. They were fine. Now my doctor wants to order another. He says there are no guidelines that say that I am in the clear. I was F0-1 before treatment. I just saw this article posted yesterday in Greg Jefferys ‎ Hepatitis C Treatment Cure and Community Facebook group. I don't want to spend the time or co-pay on another Ultrasound but perhaps I should go along with my doctor's request.
‎http://hepcbc.ca/2019/02/22/no-time-to-relax-about-liver-cancer-after-hcv-treatment-time-to-change-monitoring-protocols/?fbclid=IwAR0qmWfb8UEU-RPz2Af4mijHF5AxGYxPRiFDF09GZ2E-ZSukuAQltBgd6Wg

Congratulations. Time has gone by very quickly. Success in your future endeavors.

Hi Barry, I'm not a doctor, but I can tell you what worked wonders for me, I was sick as a dog thinking I was soon to die, and couldn't afford treatment. My iron was high and my blood was thick (and I had headaches, and numbness in extremities and cramping), I was developing diabetes, my liver and kidneys were coming apart, but this turned it around. Try this out and let us know if things improve for you.

1. Make sure your iron, ferritin serum levels are as low as you can safely handle. Ranges are 30-400ng/ml . I was at 1300ng/ml.
I was able to survive at 7ng/ml after blood letting every 2 weeks for 3 months. I wouldn't recommend going this low , but getting down to 25+ you should be able to survive okay. Time your blood lets to keep your iron low. High iron is linked to accelerated fibrosis, organ failure, cancer and viral growth, and thickened blood, so take it away. It's easy and it's free to fix, so if your iron is high, get your doctor to send you to the Red Cross ASAP.

2. Scratch 100% of sugar from your diet including fake sugars and lactose. You don't need carbs to be fit and well, you can run on ketones. Research "ketones" and ketosis and keto diets. Eat yourself healthy again. Basically eat a cup of green leafy stuff (cooked or raw) with each meal and then fill yourself up with low carb proteins, feel free to add Omega3 rich oils (research what they are, things like coconut oil, codliver oil and flaxseed oil). Get some MCT oil and take a little with your meals, it will help your brain fog and energy when you run on oils and ketones. Cut out the starches, potatoes, carrots, root veges, breads, grains, etc.

Start your day with a blended shake in the morning. Take a handful of raw leafy veges (look up best keto vegs) throw them in a blender. Add a few raw walnuts, 2 raw brazil nuts and 3 raw macadamia nuts and an avocado. Poach a couple of eggs or boil them or just toss em in raw. Add a teaspoon of coconut oil (its almost solid at room temp). Fill the blender with water and blend it up. Then eat a can of salmon with lemon juice on it. Optionally add some fish oil pills and flaxseed pills, and B group vitamins if you feel like it, they might help with thinning your blood. Stuff like this will help rebuild your gut flora.

For the rest of your meals do something similar, low carb, good proteins and fats.

Dont snack, dont cheat, dont go near a convenience store or fast food outlet, don't believe the standard food pyramid low fat guidelines.

As for sleeping, if you've got the cash, then get some 5HTP and Tryptophan capsules, 500mg-1000mg. Make sure you don't eat anything for 3 hours before you try to sleep, then just before you sleep(30 minutes) take the caps, it will produce serotonin and release growth hormone (which can help heal things) and knock you out all night. It will also lower sugar cravings and help you burn calories while you're asleep and awake.

This isn't a cure for cirrhosis or hep c, but it can make a huge difference in your quality of life. Within 3 days of blood letting and a few days of ketosis, I was up on my feet and active again. A week to a month and I felt totally alive again and I shed lbs of unhealthy weight without exercise.

oh and I dont think you want to take your Ferritin Serum levels all the way down to 7ng, I just try to keep them down at the low end of normal.

I just wanted to share what helped me manage hep C for 40 years until I could afford treatment, so if you have to wait years like I did, then maybe this info will help.

I tried many supplements over the years, and skipped all alcohol, but in spite of this at times I would feel like absolute garbage with headaches, numbing brain fog, lethargy, just feeling poisoned, etc. I would say most things like B vitamins, selenium, milk thistle, dandelion, were.. I don't know.. 'blah'. Maybe they worked or didn't, I keep taking them just in case good or bad.

But there were 2 things that I would swear by.

1. Managing your iron levels (keeping them as low as possible) through blood letting (phlebotomy).
2. Managing your insulin levels (keeping them as low as possible) through low carb ketonic diet practices.

This wont get rid of the virus but it will sure make a difference in your liver health and your overall health.

Being at high risk for cancer and sclerosis there is growing evidence that these two practices are anti carcinogenic and should also help stave off sclerosis. There are studies that show phlebotomy before interferon treatment increased your chances of success. I don't know if this would be the same case for DAA's but it is interesting to note that Ribavarin while not a DAA is known to pull your iron levels way down.

Pulling your blood iron levels down can return your liver enzymes to normal.

10 years ago my AST and ALT were elevated to near 100 way above normal ranges of 0-40, and GGT was also high, but my iron was at like 1300ng/ml where normal ranges were supposed to be 30-400.

So I started blood letting to get the iron in line. We actually messed up a little and went every 2 weeks for about 3 months. After testing my blood my Ferritin Serum was at 7ng/ml, oops - over did it. My heart valves were going nuts and fluttering with dove coo noises in my ears. We stopped blood letting cold for a year.

Shortly after stopping we did a liver panel, to check the iron, at the time I didn't notice, but my AST and ALT had gone back to normal for the first time in years! I didn't know at the time how that related to my liver health. So I didnt think much of it, until I started to feel like crap again a year later. That's when we took blood tests again and found high iron and elevated AST and ALT and GGT again. So we started the blood letting again and again the AST and ALT and GGT all came back into normal ranges. This time we continued blood letting every few months. If I forget to do my blood let, (which I have done from time to time over the years) then my AST and ALT will fall out of range again but otherwise they stay in the mid range.

The next discovery was going on a low carb diet. I went from being almost bed ridden to feeling like I could run a marathon at 53yrs and I probably could. And all without having been treated for hep C yet. I will say though if you go low carb, then its a lifetime commitment because no doubt you will lose a lot of weight and then switching back to carbs will raise your insulin levels and your weight will rebound and you'll get a fatty liver like you would not believe. Which happened to me, when I went back to a normal diet, I felt absolutely terrible. Also the fat that came off me, came from all over my body but when it went back on, it went on all around my liver and belly. I went from being a kind of overall big guy to humpty dumpty. So I went back to low carb, but in such a way that I could maintain my weight, and keep eating that way. Its takes a bit to research ketosis and how to switch from a sugar burning creature to a ketone burning creature. The difference in energy and thought clarity is night and day. No brain fog.

This kept me clear of diabetes (because prior to low carb it was looking like I was going to need insulin), I was able to drop the kidney destroying ACE inhibitor blood pressure pills (I was averaging 140/100+) after getting the liver back to normal and the weight down I went to an average 125/75 blood pressure, pulled my ALT and AST down in the mid range of normal, dropped from 215lbs to 180lbs, walking just an hour a day.

So I would say the two biggest obstacles to being healthy and normal for a Hep C sufferer are IRON and INSULIN. You can get those under control without drugs, and if you do you'll feel like you're 20 again even though you have the virus. And it wont cost you anything, except about an hours exercise a day, and eating a bit different, my food bills actually came way down once I stopped feeding the sugar cravings.

While your viral load probably wont come down on it's own, I would say also that your chances of a successful cure will also go up. So hopefully these two tips will allow you to stay healthy until you can afford the treatment.

It would be interesting to hear what someone more researched on this has to say.

Refs...

www.ncbi.nlm.nih.gov/pmc/articles/PMC5381322/ (iron increases with hep c)
www.ncbi.nlm.nih.gov/pmc/articles/PMC2716881/ (The effect of iron depletion on chronic hepatitis C virus infection)
www.ncbi.nlm.nih.gov/pmc/articles/PMC4801922/ (quote "These findings lead to the conclusion that patients with lesser amounts of hepatic iron respond better to antiviral therapy than those with larger amounts of hepatic iron")
academic.oup.com/cid/article/40/6/834/346856 (article discusses iron and HCV with many references)
hopefulgeranium.blogspot.com/2015/02/why...t-rationale-and.html (This guys virus load goes from 600,000 to 27000 only by dieting)

Hello MissusB , just wanted to say welcome to the forum and congratulations on starting treatment, Mavyret is an excellent drug, that's really great. I'm sure our resident expert, Dr Freeman, will answer your inquiry soon as to why your doctor is not concerned about Hep B reactivation in your case. Best of luck to you.

Starting Mavyret today. Have chronic Hep C for many years. Checked for Hep b and results were positive antibody and negative antigen. Am concerned about warning for potential Hep B reactivating but my Infectious Disease MD isn’t concerned about it. Anybody else in this situation or have completed Maryvet treatment with these co existing Heps?

Hi Kaju,

Congratulations on your 1 year anniversary. Even though we may know that we are cured it's always good to see those results.....

Hello kaju,

It is not possible to get Hepatitis B from the vaccine. It is made using recombinant DNA technology and consists of Hep B surface antigen fragments. It is not made from live virus and it does not contain any genetic material capable of duplication.

You could, in theory, get Hep B from the booster shot if an old dirty needle was used, but other than that there is zero chance of getting Hep B from the booster.

There is nothing to fear from the booster.