Living Without HepC

I am feeling much better today, chirpy and positively energetic. Completely different than yesterday when I was almost certain that I had “relapsed” and the virus had returned and taken over my body again. Somewhere toward the end of last week I suffered some kind of ‘knock-back’ which I can’t specifically identify. I noticed I was becoming very lethargic, low in energy and very heavy indeed. It affected me both physically and emotionally. I couldn’t find the energy to walk quickly or do anything and I felt very tired no matter how much sleep I had. I felt very pessimistic and gloomy, filled with a nagging sense of not being able to make anything happen or get anything done. By Monday I was thinking about the risk of relapse and that I was headed towards clinical depression. By yesterday I was becoming more certain about both.

And today – I’m fine again. Sure, there is a risk of relapse – 5% statistically. And I haven’t forgotten that I’m due for my 6 month test in a few weeks. Today, however I can’t see this as anything other than a textbook statistical risk (unlike the feeling of certainty yesterday). Clinical depression? I’m not a medical diagnostician but I have worked extensively with people who are diagnosed as clinically depressed and familiar with the symptoms and effects. People who are clinically depressed do not suddenly feel chirpy and positive one day after feeling so heavy and low the previous day.

I can only put this experience over the past few days down to the mysterious post treatment recovery process. Mood swings I guess it’s called. Just when I thought the post-tx period was slowly coming to a close.

Well, not quite so. I have recently seen references to a supplement called gingko biloba and its success in treating Alzheimer’s. That sent me researching the medical sites on the internet and found

Ginkgo Biloba is also often noted for its ability to improve circulation by acting as a blood thinner. It has been double-blind tested many times for its ability to increase the oxygen content to the brain and other bodily tissues. Because of this, Gingko is often taken to enhance memory, increase mental focus and clarity, and slow the progression of Alzheimer’s.

And it’s one of the top five natural treatments recommended worldwide and comprehensively researched. Apparently research has shown it helped improve memory better than placebos (always a good recommendation!).

Just the thing for brain-fog? And for helping the tingling in the ends of my fingers I get when I’m cold?

I’m going to give it a go.

Someone on the Forum very kindly posted up notice about a webcast presentation on the FibroTest-ActiTest™(BioPredictive). This is a new test which quantifies the level of liver fibrosis and inflammatory liver disease and provides a quantitative measure of disease. In other words an alternative to the Liver Biopsy.

This web cast is taking place on March13th2006 at 15:00 UK Time. You can access this web cast on Monday with the information below.

ACCESS DETAILS:

Conference Name: Lab21Conference call
Date: Monday, Mar 13, 2006 3:00 PM GMT
Direct MeetingAccess: http://livemeeting.com/cc/premconeurope
Information:
—————————————————————————————————————————-

TO JOIN THIS WEBCAST:

1. To be entered directly into your VisionCast Event click on the Direct Access Link above.

2. Alternatively enter the VisionCast site and log into your meeting using the Meeting ID and Password:

VisionCast: www.euvisioncast.com

YourName: (Enter yourname)
MeetingID: Lab21
MeetingPassword: 6024199

Then click ENTER at the bottom of the page.

Testing this out, I clicked on the link and was taken directly and easily into the conference system (although no conference was going on of course).

I’ll be interested to see this on Monday and the organisers are happy for readers of this blog to just sign in and particpate.

Pauline Hennessy, from UK Hepatitis C Resource Centre, Mainliners has emailed me information about the Mentoring Conference. I attended two Conferences in London a few years ago and found them empowering experiences - to be in a large group of people all of whom have HepC was a very strong experience for me just after I was diagnosed. And the discussion workshops were useful. Unfortunately I can’t go to the this year’s conference in Glasgow but I would recommend having a look if you can make it.

ONLY A FEW PLACES LEFT!!!

Please also note that the Chief Medical Officer for Scotland, Dr Harry Burns will be opening the conference.

Pauline can be contacted for further information at
Tel: 0141 353 1308
Fax: 0141 331 2552
Email: PHennessy@mainliners.org.uk

I received an interesting email this week from Kevin in China. As I was writing back to him I found myself describing my treatment in a way that I hadn’t been able to write about earlier.

Kevin’s has given me permission to reproduce our emails here. I have started first with his email, then my reply.

Hi Ron,

Thanks for you’re email. I found out about the forum while surfing for UK hep C sites, most are blogs in standard domains so cannot be accessed from China because the government blocks them.

Overall, I have found the site informative and, since joining, supportive of my beginning conventional anti-viral therapy. But, I was a bit overwhelmed by the general tone regarding complementary medicine. I found that a number of people have, with undoubtedly benevolent intentions, set themselves up as hep C “experts.” Now we all know there is no such thing. The only certainties about this virus are it affects each of our lives differently and we each respond to any form of treatment with disparate results.

When I joined the forum I communicated with a few people, the result of which made me doubt my own well thought out choice to pursue western and complementary therapies in conjunction with one another. The doubt became so strong that I even stopped the TCM for 4 or 5 days. This just didn’t feel right but I couldn’t figure out for myself why. Then, my health went a little downhill and the side effects of the combined anti-viral therapy appeared to increase. The irony is, I joined the forum for a bit of clarification from hopefully like-minded folk regarding the use of various therapies but found quite a strong prejudice against TCM. Then it struck me that what didn’t feel right about the advice I was receiving was that its tone and content were so very similar to that of doctors I had spoken with during my initial diagnosis; the tenor of their response to my having the disease was flippant and their knowledge little more than speculation.

I think that it raises an interesting fissure in the hep C community, one that no doubt mirrors to some extent society in general. I suppose I expected, perhaps naively, to find those with the virus more empowered and ready to consider the benefits of other therapies. In the future, it is a debate I would be happy get involved with on the forum to try and debunk some of the misconceptions regarding complementary practitioners and their methods. But, at the moment, I am too wrapped up with trying to stay well enough to stay on the interferon (my white cell count has dropped to borderline levels so I am on Neupogen to try and raise it, otherwise I’m off the treatment) and keep up my full time job.

This isn’t meant to be a rant just some of my reflections on what surprised me when I joined the forum. I must reiterate that I have received lots of goodwill and support, especially from those who are so against the complementary medicine. Also, the site is a fantastic resource and provides a great sense of community when you feel the need for a chat with others “going through it.” Finally, can I say I very much enjoyed reading your own journey through tx and now post tx. Your candid self-reflection is a great source of solace to many I am sure and I thank you for getting out there are doing it.

With kindest regards,

Kevin

………..and my reply back:

Hi Kevin

Thank you for your email. It didn’t read like a rant at all. I know on this tx it’s hard to know sometimes if it is a rant or not.

Your comments about TCM are very interesting. I tried herbs & acupuncture for a year before I did the combo treatment. It did help with some of my symptoms definitely, although I am sure it sent my ALT’s into a very raised and erratic pattern. I wasn’t discouraged by my Consultant Hepatologist. In fact he is running trials and research on TCM. I was invited to participate but didn’t for 2 reasons - I didn’t want to risk being in the placebo group and, secondly, they were testing prepared compounds. I had sufficient TCM treatment experience to recognise the benefit of an individual ‘recipe’ or prescription of often 15 herbs tailored to my needs. When I reached the point of deciding that I did need to take the “dreaded” combo therapy as the surest way of clearing the virus, he did ask me to stop the herbs because their interaction with the meds has not been sufficiently researched (to satisfy his western scientific mind I think). I suppose doctors in China are probably more experienced in this area and could contribute to the knowledge base on HepC in this area. Of course I conformed to his advice with the intention of doing everything I could do to cooperate with the treatment wholeheartedly. And my treatment has been successful - to date my month 3 tests were clear.

Other consultants seem more offhand about combining the two treatments - I am sure people have directed you to Jonathan Colam’s blog; he did use both and cleared the virus and his consultant was happy to endorse this.

Personally I am very much in favour of complementary therapies. As I realise now, the words to describe the approach I have evolved over time since diagnosis is an integrated approach. I think mind body and soul need to work together and in partnership with the toxic chemicals in the medicine in order for it to kill the virus. I know my body can not clear this virus on its own. My body can, however, heal and I can focus on that. My wife is a complementary therapist and I have benefited from her practices - aromatherapy massage, reiki, reflexology. And her Buddhist practices. I have learned how to meditate and received some empowerments over the recent two years, developing my spirituality.

“Search for balance” is familiar to my way of thinking - I needed to do this constantly on treatment. I believe complementary therapies helped me to focus on my equilibrium as much as possible within the limitations of the side-effects.

From another perspective, “search for balance” is what TCM aims for too. When similar thinking arises from different life perspectives and vantage points these similar ideas seem to me to become universal truths. But enough on that from me.

Unfortunately there are a lot of people out there on the net who will present herbs as sure-fire remedies for HepC and they’re cons. Also unfortunately, lots of people don’t know how to differentiate between the genuine and the fraud - particularly if they will consider only what can be proven from a “scientific” viewpoint. And lots of complementary therapies aren’t based within science and that makes a challenge for people born and bred with the view that scientific proof is the only truth.

Science is getting there, though, with research that shows that “the placebo effect” works because of the patients belief system. I believe scientists will soon begin to test more complementary therapies and these will become acceptable scientifically.

As for patients becoming more empowered - there’s a lot of work to do. People are given loads of information now about Hepc - by the professionals, on the internet, and so on. There isn’t much of a culture of supporting and enabling patients to digest and metabolise the given information and consider the impact and implications within themselves. There isn’t much encouragement in practice for patients to take responsibility for their own health. The National Health Service holds this principle underpinning its service planning however but frontline practice is a long way behind.

The whole experience of learning to live with Hepatitis C has been empowering because it has led me to so many experiences both rewarding and painful. Surviving these has helped me to face taking responsibility for my health probably for the first time in my life.

You are quite wise to keep your focus on yourself during this treatment. To me, that is a core part of a commitment to clearing this virus and to healing and to recovering health. And this is your time to live that commitment.

My haemoglobin went way down toward the end of my treatment and we talked about Epoetin, so I think I recognise how fatigued you must feel at the moment. You are amazing to also be doing a full time job at the same time.

I hope we will be in touch again sometime

Wishing you well

Ron