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AHCS Editor/Administrator Linda McInnes did an exclusive interview with "Fred", on his treatment experience with hepatitis C, and his experience with alternative therapies. Also featuring Fred's written hep C treatment STORY following the interview.

Interview:

Let us start with a bit of a background story; tell me about your first initial contact with hepatitis c.

What was your genotype and did you have any stage of fibrosis?

Yes I was diagnosed in 1994, and in 1996 there was a trial happening at the Royal Adelaide Hospital (RAH) with interferon monotherapy and I had a PCR test then to determine my genotype and fortunately I had genotype 3. When I say fortunately, well it responds better to treatment, but it does have some other complications like steatosis and Insulin Resistance, which can be more common with genotype 3 and although I had no steatosis, I did have some experience with insulin resistance which would make me feel a bit nauseous and shaky when I ate carbohydrates and sugars without enhancing them with proteins.

Did you have any level of fibrosis?

Yes, my first biopsy showed level 2 fibrosis, both of my biopsies were back when they were a prerequisite to accessing treatment, I’ve done two lots of treatment.

Your first treatment was interferon monotherapy, can you tell me when you did this, and what the outcome was.

Yes I did monotherapy for 6 months being genotype 3 and it was unsuccessful, I think my ALT’s were always were on an average of between 170 to 200 in those days and in the first two months of treatment it went down to 15 I believe, then in the third month of treatment they went back up again and there was still detectable virus at the end of treatment.

What health problems did you have during monotherapy?

For me it was mainly cognitive stuff, brain fog and just loosing my track of thoughts in conversation with people.

Did you have any health problems after monotherapy?

To tell you the truth I didn’t really notice them so much because it wasn’t until after monotherapy that I looked into alternative therapy and looking after my health a bit better and changing my lifestyle, so I was actually feeling healthier than I had previously.

You tried alternative therapies and this was after treatment?

Yes it was after treatment therapy in 96 I moved up into the Adelaide hills and actually got more involved with a group of friends that I used to have who were into alternative therapy for numerous things really, but yeah, I gained a great deal of knowledge and experimented with quite a few.

What ones did you look into, was it colloidal silver?

Yes I tried colloidal silver for about 8 months to kill the hep C.

Did you find that of any benefit?

There were benefits in the fact that I was actually using it to try kill the hep c virus but I don’t think it has actually any power to do that now looking back but it did actually kill the herpes virus as I used to get about 4 cold sores a year on my lip and I didn’t have any cold sores for about 6 years, now I get the occasional one, one every 2 years I’d say.

Have you tried combucha tea?

Combucha tea, yes I have actually, I found that to be wonderful stuff, actually my sense of well being was wonderful, very noticeable while taking combucha tea. I did that for about 8 months also and I think I was actually, you are only supposed to take one glass per day, and I used to like the taste so much that I used to have 3 or 4 and after about 8 months my body just knew that it didn’t want it any more although I still like the taste of it, and my friend makes it and I have a glass of an evening, yes I think it has wonderful properties.

*Warning: It has now been discovered that Combucha Tea is hepatotoxic (toxic) to the liver, please consult your health care professional before taking this product.

Have you used St Mary’s Thistle?

Yes, I started using St Mary’s around that time as well as the colloidal silver, and yes I think Milk Thistle does have some beneficial properties for people with hepatitis c in protecting the liver.

Can you tell us your experience with a Chinese homeopath for acupuncture?

Yes sure, it was after my monotherapy when I went to see a Chinese homeopath/naturopath and he was doing acupuncture for my liver, which would be around the ankle area with acupuncture needles and he also had an electrical machine that had an apparatus which looked like a light bulb and emitted weak sparks. He used to rub that around my liver area and he would do that for about 10 to 15 minutes each visit, he said that it would help to stimulate my liver. I believe that contributed to reversal in my liver, there was a marked improvement in my liver fibrosis (the fibrosis reversed from level 2 back to zero and I believe that, and the acupuncture and his homeopathic medicines to be the thing that did that.

The next treatment you did was the combination treatment, when did you do this?

I did the combination treatment, it was in the year 2000, mid 2000, around July I think Actually it was after the hepatitis c council held a forum called “Should I go on Treatment”. The forum was facilitated by Greg Dore (one of Australia’s leading Epidemiologists). Well they used myself and another person as case studies and they put our history up on the wall, and in my case, being a genotype 3, and also being a relapser, Greg Dore said that my chances of success on the combination treatment would be around 80. So I decided to give it a go.

How long did you do the treatment for?

For 6 months.

Did you have any problems during treatment?

Yes, I don’t think you can say it’s a walk in the park for anybody on treatment really, but the main problem that I experienced was brain fog, feeling that your head was in a different space, and most of the time I would feel overwhelmed when people came to visit, mostly it would be well wishers and people offering support but when I had more than one person at my house at a time I found that really taxing quite overwhelming really, so it was that sort of brain stuff that I found the most difficult. Of course there was lethargy and flu like symptoms and there was an itch for a short period but it was the brain stuff really.

What health problems do you have since finishing treatment?

There was an old existing problem with my back but that was nothing to do with the treatment, I believe a lot of people my age have a similar problem. I would like to say that at the end of treatment there seemed to be a lot of emotional numbness or a flat mood sort of thing that I found took some time to lift after treatment. Even though I had cleared the virus the second time around and people used to say to me ‘you must be over the moon Fred’ and I’d say ‘yeah, I think so’. I couldn’t really feel it, I just felt flat. Those mood things I believe personally and the cognitive stuff combined, although it had improved week to week, I believe that took several years to completely lift, whereas now I think that my short term memory is reasonably good, I must say that it was some time after treatment for that to come about.

Do you think your reversal in fibrosis was because of the alternative therapy?

At first I believed it was due to the interferon, my liver specialist at the time said that it could have been a possibility but secretly I suspected it was the acupuncture, the combination of the acupuncture and the homeopathic medicines and yes just a healthier life style.

Did you try any alternative therapies during this second treatment?

I probably reduced them, especially in the first two months I didn’t want to actually take anything other than the interferon/ribavirin, just to, you know, I just felt an obligation because its so expensive to do the treatment and I wanted it to work and I wanted to follow the specialists advice. But two months into it I introduced the St Mary’s Thistle and a vitamin B complex which I spoke to my specialist about and he was fine with that.

What advice would you give anyone contemplating treatment?

It’s a very individual thing and I believe its worth giving it a go even for the fact that it reduces inflammation in the liver, some people believe that can last for a year or two. And there’s a 50/50 chance or greater than 50/50 chance that you can be rid of the virus, even though there are side effects, they are temporary, so I believe it’s worth giving a go. I’ve spoken to a lot of people who have relapsed after treatment and they are very anti-interferon but I wonder if they would feel the same if they had achieved a sustained response.

Which alternative therapies are you using now?

I would probably use more if I could afford them but I stick mainly with a vitamin b complex and I take a thing called DMAE, I cant remember what it stands for, but its simply an amino acid that help with brain functions so I take that daily with a multi vitamin, and I also supplement with a natural testosterone cream which also helps with the cognitive functions and improves my stamina a bit. Also, with any alternative therapies one should always let their doctors know what they are taking.

What can you tell us about 5HTP and your experience with it?

I found it very helpful actually because I believe that even though I have cleared the virus for I’d say up to 4 or 5 years or maybe even 6 there was a lingering low level depression from the treatment that persisted, so I took 5Hydroxy Tryptophan for about 18 months. I can’t afford to take it any more, I don’t seem to need it now but it was very helpful at the time.

Did you find that maintaining your health with alternative therapies to be quite costly?

Yes I’m afraid so, with my volunteer work, I exist on newstart benefits which unfortunately doesn’t leave enough money for some costly alternative therapies that I would like to actually use.

For people that cannot afford therapies are there any supplements or vitamins that you recommend they could start with to help maintain their liver?

Yes probably not the liver so much, but I find a multi B complex vitamin to be essential I think and it has helped me all the way through and if you can afford it, St Mary’s Thistle as its been proven in very large studies overseas, especially Germany where it has actually reversed fibrosis in individuals with alcoholic cirrhosis.

It has now been 6 years since you cleared the virus, how are you feeling, do you still continue to see a health care specialist?

No I’m feeling great these days, its like a different life really, especially considering I have some friends who are some reasonably heavy drinkers on the weekends, I don’t visit them every weekend but when I do, I tend to drink quite a few beers and the difference now, compared to before when I had hep C is phenomenal. Its not a huge thing but to me it’s a great improvement. But before I would be, you know, I’d be not quite in bed for a whole week but I’d be in bed for a couple of days with fevers and stuff like that, the hangovers were shocking but my life is a bit different now there is quite a semblance of good health.

Now we will move onto your volunteer work with a Hepatitis C organization, you are a Peer Educator and visit drug rehabs, can you tell me about this role?

Sure, I really enjoy my role in that work, I find that I relate to the people and can often pass on some vital information. It can be quite surprising that the level of knowledge about transmission of blood born viruses among injecting drug users who might share equipment is sometimes quite low, especially among the young people who inject drugs. So I find it a vital role and I enjoy doing it.

You also co-facilitate a course called “Living well with hepatitis C” run through Relationships Australia, could you tell us a bit about this.

Sure, the living well with hep c workshops I find are very helpful, especially for people who were actually struggling with their health with hep c, some people may find it basic stuff but its giving people tips and clues to help manage a chronic illness, it gives people strategies for dealing better in most areas of their lives like chronic fatigue, depression, interacting with health care professionals etc. The courses run for six weeks, each weekly session runs for 2 and a half hours. The workshops are run through MOSAIC Counseling which is a part of Relationships Australia SA. MOSAIC are counselors who deal with all issues around hepatitis C and HIV. The MOSAIC Counseling team are just fantastic and we refer people to them for counseling from the Council quite often.

What do you think the future is in regards to Hepatitis C?

I think it’s quite positive, there seems to be quite a number of scientists and researchers now on the job looking for to develop a vaccine and better treatments. Hopefully the treatments get a lot better and we won’t have to rely on interferon at all. Although it’s still the best thing we have at the moment, I believe that if one can do some other treatment that doesn’t have such serious side effects and just get away from interferon altogether – that would be great as it’s quite a difficult thing to go through.

Is there anything you would like to add to this interview?

Yes, especially about the future in regards to hepatitis c treatment, I’d like to see better treatments and a vaccine developed, mostly I would like to see the existing services for people with chronic hep C improved, I think there needs to be more practical support for people who advance to serious liver damage, perhaps something like a respite house where people can go for a week or two and have meals cooked for them and such. I feel that there’s a need to help some people to get away from the stresses of life and illness if even for a short while, I believe would be very beneficial. I have observed people who have progressed to serious liver damage that seem to go downhill faster because the stresses of life are just too hard to deal with. Unfortunately the Hepatitis C Councils around Australia don’t have the funding to do things, to do much in that area.

I just think that especially for people on treatment who live on their own or even people who live with their families that find it hard, if only we could have like a respite house in the country maybe somewhere, and just go there for a couple of weeks or a month and have everything taken care of, a bed, nice food and a peaceful atmosphere just to get away from worries, because on treatment, stress can be the biggest, you know the hardest thing to deal with and more so for people who have progressed to serious liver damage.

You think that family members aren’t coping with the ones that are on treatment?

Oh I think it’s a very difficult thing, the relationships come under an incredible strain for people that are on interferon and I think that for people on interferon it seems like its quite invisible in the beginning, there is a irritability that builds up and even when people are trying to help you, one can get quite angry and snappy at times and lash out and its very difficult for family and friends to support one that’s on treatment where the person is actually very irritable and a bit confused, you sometimes don’t quite realize that family members are trying to help. Its not anger so much, but you just wish people would just leave you alone. You feel like saying “this is just all too hard for me to deal with, all your concerns”, its difficult, it sounds bizarre but I’ve heard this reported so often.

A respite centre would help alleviate this problem?

I believe so, I believe just to get away for 2 weeks, especially a month where you could just have someone else to just pay your bills, look after your house for you, to just get away and be with others who support each other who are also on treatment. I think would be an incredible asset while on treatment, and of course for people with who are getting quite ill.

Since your diagnosis, you have obtained quite a bit of knowledge about Hepatitis C, where did you obtain this information?

The Hep C Council, for sure, in the early days the knowledge was quite poor really, I wasn’t really reading the transmission routes and things like that, so I visited the Council with a new girlfriend and they gave me every copy they had of the Hep C Review, the magazine that’s brought from the Sydney Hep C Council and I just soaked all that knowledge up like a sponge and just found that there was a desire to keep learning more. So I started volunteering at the Council, and it’s been wonderful actually, yes the Hep C Council, and the phone line there is great for people ringing up and just wanting to have a chat and find out a bit more, yes a great source of information.

And you also run a support group called “Calming the C” at the Hepatitis C Council.

The Council runs a group, I just kind of facilitate sometimes, but yes that’s a wonderful source of information too, especially for people considering doing treatment and people that are currently on treatment, it’s great for them and works well.

So there is quite a lot of support out there from the Hepatitis C Council.

Yes, I can’t imagine what life for people with hep C would be like without the Hep C Council.

FREDS TREATMENT STORY

As published in Issue 21 Of the Hepatitis C Community News 2002

I thought that if I share my experiences with doing the Combination treatment. It might help some others that are contemplating treatment.

Although near the end, (five months into it) I could not wait for the treatment to finish, overall I found that it could be tolerated. Mind you, after having said that, my course of treatment was only six months (having genotype 3a). I somehow feel that it may have more to do with the length of time that one expects to be on treatment rather than the actual time itself. Of course, that's just a feeling.

The first four to six weeks were very much like a severe flu. I felt that perhaps I had picked up a flu virus as well but maybe it was just the Interferon. After those symptoms died down a bit there were other less debilitating ones like the soft tissue inside my nose became very dry and there was always blood present when I blew my nose. I had probably lost about 5 kilos in weight as well and I had a horrible itchy skin, which was cleared up after applying a cream prescribed by my GP.

Probably the most concerning symptom for me was the brain fog or short term memory loss, I found that whilst talking to people, all of a sudden it felt like all thoughts would just drop out of my head and I couldn't remember what the conversation was about. People would notice this blank, confused look and fortunately realised what was going on. That symptom actually got more intense and took some time to dissipate even after ceasing the treatment.

The Ribavirin tablets which I took daily (I think it was three in the morning and two at night although it could have been the other way around, it is a little bit difficult recalling it now as it all seems a bit hazy looking back on it) have symptoms of their own too, they lower your haemoglobin (red cell count) making you anaemic which has the symptom of making you feel short of breath and a little bit weak.

This side-effect is not as bad as it sounds and my GP advised me that the only time this would become a serious problem would be if the haemoglobin dropped very suddenly and also that one cannot get the levels back up with iron etc., as the anaemia is drug induced.

The actual injecting of the Interferon wasn't really the drama that I thought it would be. The drug comes in these neat litlle ready pens, which you dial up the dose at the bottom of the pen, attach the tiniest needle to the other end and find a roll of skin around the tummy area and just pierce the skin (which sounds awful but really isn't that bad). This gets a bit more difficult near the end of treatment as there seemed to be a bit less of a spare tyre as I lost weight. Once the needle is in it's just a matter of pressing down the end of the pen which clicks as it goes down.

I probably should mention that near the end (fifth or sixth month), I felt there was a bit of psychological aversion to putting the needle in, as I knew what the side-effects would be like. My hair was also thinning somewhat and that was a bit of a concern. I persevered anyway and I am glad that I did. By the way, the hair does grow back after a few months of ceasing treatment.

I found that at the end of the fortnight, which is how long the ready pen lasts, there was always some left over Interferon. This seemed like a terrible waste and because I wanted to give myself the best chance of success, I started to dial up a bit extra each time. This brought the dose up to about three and a half million units, which my specialist thought that was a reasonable tactic, (more is better, he said). Having said that though, that would be an individual choice depending on how severely you experienced side-effects. Check with your specialist first.

The most encouraging sign for me to follow through with it all was that the blood results after the first month were good. My ALT's had dropped from always being around the 200 mark to 15, which helped me to feel that it was actually working. They stayed around 15 for the whole six months of treatment and now hover around 25 that I have cleared the virus.

I realise that this may not happen with each patient. This insidious virus seems to respond to treatment differently with each individual. I sincerely hope that others have an equally successful time of it. It's not really a walk in the park but with a bit of preparation and support it can be managed. By the way, I lived alone and was still was able to mow my lawns, clean the house etc.; I would encourage anybody who is contemplating it to have a go, as it may well be worthwhile.

This might sound a bit controversial with some but another thing that I felt helped get me through the side-effects was smoking a bit of dope. I think it helped with the physical stuff but mainly helped to keep my appetite happening. It also may have exascerbated the memory problems but I felt like what the ......, if it makes me feel a bit better?

If I had to do it again, I don't think I would do it any differently, I should probably mention that I took St. Mary's Thistle and a vitamin B complex daily.

I would like to add that I undertook Interferon monotherapy in '96 and although it wasn't successful in clearing the virus, there were other benefits such as reversing the fibrosis from stage 2 back to zero, a rare thing apparently. I've spoken to others who undertook the Interferon monotherapy and although they also did not clear, they reported that they felt better for a couple of years due to the reduction of inflamation in the liver.

How does it go - "you'll never, never know if you never, ever give it a go".
Fred

Please remember that this was written in 2002 and treatment has improved considerably since then.
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Treasure harmony above all else

http://www.hepcaustralia.com.au/forums/viewtopic.php?t=198

My name is Will, I am a single man, 61 years old and living on my own. It was the 1st October 2003 when I had respiratory problems and heart failure. I had been admitted to the Queen Elizabeth Hospital and was not very well at all. On top of all this, the doctors told me that I was diagnosed hep C positive. Well, this stunned me!
I had been feeling sick, with no energy, for five years or more and getting worse by the month. The doctor who had been my G P for the last decade, didn't have a clue as to what was wrong with me. He had failed to diagnose that I had hep C, even though I had been complaining for years that I was not well.
Over this time I had become a very heavy drinker. I was drinking a bottle of whisky a day so that I could block out the pain and the sickness that I felt, of an illness that I knew nothing about. I was losing weight, my appetite had gone, I had no energy and I was depressed. This was before going on any treatment.
I was in denial about the depression, so I took myself off the antidepressants. This was not good! Through information given to me at the HCCSA I changed doctors to a hep C friendly doctor, one who knew what he was doing.
I had more blood tests and found out that I was genotype 1. A biopsy let me know that I had level 3 fibrosis. I was offered treatment and not knowing much about side effects I jumped at the chance. I wanted to get rid of this evil little virus!
Now I was looking at 48 weeks of treatment. I had no support system set up and most of my friends had left me because of my anger, my daily ill health and depression. I was no fun to be near I was confused and couldn't understand why no one wanted anything to do with me.
I started combination treatment of Interferon and Ribavirin in the first week of June 2004. Well the first week didn't seem to bad at all, the second week I felt a little bit sick for a couple of days. The third week, it hit me for six out of seven days Bang! FLAT ON MY BACK! Couldn't eat, couldn't move, couldn't do a dam thing!
My body no longer felt like it was mine. It felt alien. Food didn't taste the same, if I could eat at all. My ill-fitting false teeth were rubbing on ulcerated gums and the treatment gave me a sore throat. I was no longer able to look after myself.
It was the 1st of august - my birthday and I felt like a bomb had hit me! I thought I'd been given a death sentence. I was so scared.
Unfortunately throughout treatment I suffered a lot of side effects - but the one that topped it all, was, and still is "The Depression" ----
Just the same, with all that was happening I still managed to complete the 48 weeks. At 24 weeks into treatment the virus was not detectable, at 48 weeks it was not detectable. Great news it seemed that I had been cured!
Then when I had my last blood test at 74 weeks the virus had reappeared
Well now I'm looking around to see if I can access treatment on compassionate grounds. Just the same, I wouldn't mind being a part of one of the new trials that come up from time to time!