Chapter 21

My Journey, My Choices

Randy Dietrich
Introduction

This is the story of my journey with hepatitis C, and of my choices. My motivation for sharing my story with you is to try to help both you and myself. When I was first diagnosed with hepatitis C, I wanted to know about the experiences of other people with hepatitis C. I thought that hearing about others’ experiences would help me make my own decisions. I still believe that. But there was very little information available. I am sharing my story with you as one man’s contribution toward trying to help us all find our way in this journey. I am a true believer in the power of teamwork, and in the motto of the Hepatitis C Caring Ambassador Program, “Working together, we can make far more significant advances than could be achieved by anyone working alone.” We are all in this together. Just as hearing others’ experiences motivates me, it is my sincere hope that sharing my story will help motivate you, too.

As you read my story, it is important to understand that everything I have decided to do or not do reflects what I believe is right for me. Based on your own personal circumstances and your intuition, you must decide what is right for you. I want to stress that the most definitive medical test to determine disease progression is a liver biopsy, but the results are not always conclusive. I have had two liver biopsies, one at the time of my diagnosis and another two and a half years later. Unfortunately, there was no conclusive information from my second biopsy to determine whether my liver disease has progressed or not.

I should mention that I do not know how I got the hepatitis C virus. And since I do not know how I got the virus, I do not know when I got the virus. This makes it very difficult to determine the my disease progression. For the most part, I am symptom free. I occasionally experience tightness or slight pains in the liver area. On rare occasions, I have night sweats and indigestion. Fortunately, I was diagnosed prior to developing any significant symptoms.

One important question to ask yourself before deciding on any given treatment for your hepatitis C is, “What are my goals?” Is it important to you to clear the virus? Or are you comfortable living with the virus so long as you are able to feel healthy and well? These can be difficult questions to answer, but it will be important as you make decisions about various treatments. My treatment goals are:

to have good health for as long as possible, and
to get rid of the hepatitis C virus.

For me, it is important that I do not sacrifice the first goal in order to achieve the second goal. Ideally, I hope to one day achieve both goals.

If clearing the virus is important to you, I want to share with you the fact that I have done a lot of research about various treatments for hepatitis C. Although I have heard anecdotal stories about people who have cleared the virus without interferon-based therapy, I have never seen any proof. If you or someone you know has cleared the hepatitis C virus without interferon-based therapy, I would very much like to hear from you! However, to date, the only therapy I am aware of that has been proven to clear the virus in some patients is interferon-based therapy. But, I encourage you to do your own research, too.

Based on my experience with hepatitis C, my advice to you as you go through your journey is:

Get as much information as possible.

Talk to and use the services of as many health care professionals as possible, from as many different disciplines as possible.

Use your support network; develop one if you need to.

Make choices that work best for you.

Focus on your overall health, not just on hepatitis C.

Make the best of your hepatitis C situation. Enjoy and learn from your journey.

The Beginning of My Journey: My Diagnosis

My story began in January 1999 when I had a routine physical. Because my blood tests showed high liver enzymes (ALT 88, AST 82), a hepatitis check was done. The test came back positive for hepatitis C. My doctor had me come in for more specific blood tests. He also told me it would be a good idea if I did not drink alcohol while we waited for the results of the new tests. He said if the results were positive, then we would talk about what they meant. I did not think much of it. I assumed hepatitis was a short-term problem. I did not stop drinking alcohol, though I did reduce the amount I drank.

In the meantime, my mother was having a heart valve replaced. My sister and I traveled to Cleveland to be with her and help her make decisions. While we were waiting for my mother to come out of recovery after the surgery, my sister and I went to the hospital library and got on the Internet to do some research on hepatitis C.

I was in shock! I could not believe my eyes! Every article I pulled up talked about how more people were going to die from hepatitis C than from AIDS, and that it was the leading cause of liver transplants, and how nobody was talking about this silent epidemic. There were numerous articles about treatment for hepatitis C and the terrible side effects. It seemed the successes were very limited. I could not find any articles that said there was a cure, but found many that said there was not a cure. My sister and I were stunned. We just could not believe that an energetic 42-year-old man who was feeling good could be suffering from a deadly disease. We printed a number of the articles so we could take them back to our hotel rooms to read.

The next morning, from my hotel room, I called my doctor’s office. They read me the results. Not only was I positive for hepatitis C, but I also had a viral load of 799,000. I was alone in my hotel room when I got the news. I just sat on the bed and cried. Questions were running wildly through my head. How much time did I have? What were my odds of beating this thing? How had I contracted it?

I was about to be named president of my company. I thought to myself, not now! I did not need this in my life, especially not now when I was getting ready to take on a new job. One of my favorite sayings that I have learned on my journey is, “How do you make God laugh? Tell him your plans!” Hepatitis C was definitely not in my plans.

After about 20 minutes of crying, I got up off the bed, and the thought hit me: So what? You thought your whole life was going to be easy? Did you really think you were never going to have to deal with any major problems? I had always encouraged others with serious health challenges to become experts on their disease, and to fight it. I had given out copies of Bernie Siegel’s book Love, Medicine and Miracles, to friends who were fighting cancer. It quickly became apparent to me that I had "talked the talk," but now I was going to have to "walk the walk."

My sister came to my room, and we cried together for a while. Then we started to pore through the articles we had printed looking for names of people I could call. My first phone call was to Hep C Connection, a national organization for people affected by hepatitis C. I spoke to a very helpful gentleman there. As we spoke, I quickly realized that many others were in the same situation as me. I was walked through a series of questions that helped me begin to understand my disease. I learned some basic information such as the meaning of viral load, and that my level was not necessarily high. I learned my ALT and AST levels were above normal, but not off the chart. Still, I did not have a very good understanding about what this disease might mean to me. What was my prognosis? How fast or slow would the liver damage occur? Was I likely to need a liver transplant?

One of the scariest thoughts for me was whether I had infected my wife or any of my three children. Everyone was tested immediately and thankfully, all the tests were negative.

Following my mother’s successful surgery, I returned home. After we put the kids to bed, I sat down with my wife and told her about my diagnosis. I explained the limited information I had gathered. We cried together and then vowed that we would fight this together, although we had no idea how to go about doing that.

My wife and I were leaving in two days for a 12-day trip to Australia. I wanted to take this opportunity to learn more about hepatitis C, so I called Hep C Connection to get recommendations about useful reading material. I purchased five books on hepatitis C and got more articles off the Internet. I had plenty of reading for my trip! I read every book and article I took with me. After a while, I started to get a better picture of the disease.

It seemed that for most people, hepatitis C is not a death sentence! Simple terms that used to send fear through me were now starting to make sense. For example, I learned the term “chronic hepatitis C” simply meant the virus persists in the liver. It did not necessarily mean that I would have all the symptoms of the disease, that my liver would become cirrhotic, or that I would need a liver transplant. Based on my understanding of the material, it quickly became clear that alcohol was definitely out, and I should avoid fried foods, coffee, red meat, and many of my other favorite foods.

On my way home from Australia, I drew this diagram.

*Complementary and Alternative Medicine           

I looked at the diagram and played a little game. I would cover up one of the circles on the diagram and ask myself, “Can I ignore this aspect of my health care?” Playing this game, I realized each category of care was important to maintaining my health. It became obvious to me that I needed to investigate all the various disciplines to figure out what I needed to do.

After the initial shock of my diagnosis wore off, I met with the president of my company, Jim Possehl. We had a lengthy discussion. I told Jim about my liver biopsy and that the doctor had recommended I begin interferon-based therapy immediately. He asked me what I was going to do. I told him I thought I needed to do some research before making that decision, a lot of research. We discussed the possibility of having my secretary help me with the research. Then we talked about perhaps hiring a medical secretary to assist me with this task. We even considered hiring a medical doctor to help me investigate my options. But as we talked, we both realized that any one person we might hire would be biased by his or her own training and experience. Together, we concluded that a team approach was needed.

At my company, Republic Financial Corporation, we make decisions by bringing together in the same room all the different business disciplines such as sales, legal, operations, financial, and management. Each discipline challenges the others. We call this process, “teamstorming.” We believe the people representing the different disciplines have different experiences and insights into any given problem. If we all challenge each other to be creative enough to come up with a solution that works for all the different points of view, then it is probably a better decision than any single individual would have come up with on his or her own.

As in business, there is a wide variety of health care disciplines. However, in medicine, it is often very difficult to get people from various health care disciplines into the same room, let alone for them to seek and agree on a common solution. Part of the problem is that many of the individuals in a particular medical discipline have little or no knowledge about what the other disciplines do. This lack of knowledge can lead to an uninformed prejudice that other disciplines have little medical value.

At the end of our discussion, Jim and I agreed that I would postpone becoming the new president of the company until I had a better feel for what this disease meant to me, and what my long-term prospects were. We also agreed that I would take a three to five month sabbatical from the company so that I could assemble a team of health care professionals to brainstorm possible common solutions for people affected by chronic hepatitis C. I took the next four and a half months off.

This was the founding of the Caring Ambassadors Hepatitis C Program started by my company and me. For myself, I wanted to be able to participate in a teamstorming session in which representatives from each of the various medical disciplines would present his or her ideas of how I should either clear the virus or live with it. I wanted to see all of their theories tested against and challenged by health care professionals from other disciplines. I believe decisions become much easier when a person has information. I wanted as much information as possible before deciding what my own treatment choices would be.

My sabbatical was to last however long it would take to get the Caring Ambassadors Hepatitis C Program started, and for me to come up with a good plan for how to approach my infection hepatitis C.

My Experiences with Various Treatments for Hepatitis C

I want to share with you my experiences with various treatments for hepatitis C that I have encountered along my journey. Of course, these are my experiences and yours may be different. I share these experiences in the hope that by openly sharing my experiences, I may be able to help others who are still considering various treatment options. For each treatment discipline, I will tell you about both what I liked and what I did not like about my experiences. Personal anecdotes of specific experiences I have had with the various health care disciplines are offset in italics.

Before I begin telling you about my experiences, I would like to tell you about my belief in what I call “the 95/5 rule.” According to this rule, 95% of people are good people who do their very best to live life in a positive way. The remaining 5% are people who do not do that. Often times, although the vast majority of people are good, we find ourselves spending inordinate amounts of time thinking and talking about the actions of those few people who are not making an honest effort. I believe this same rule applies to health care professionals. The vast majority of people in the healing professions are caring people who work very hard trying to do their best for their patients. Only a small minority falls short of this level of commitment. Although there are great differences of opinion about how best to help people with hepatitis C, in my experience, the vast majority of health care practitioners are genuinely trying to do their best to alleviate the suffering associated with chronic hepatitis C. To the extent that I have had negative experiences, I ask that you view these as one man’s experiences. My experiences should not be interpreted to be representative of the potential contributions of any given health care discipline.

Western Medicine (Allopathic Medicine)

What I Liked

Western medicine has been and continues to be a very important part of my treatment. It was through western medicine that I was initially diagnosed with hepatitis C. I consider having the diagnosis to be the most important information a person with hepatitis C can receive. Had I not been diagnosed, I would still be drinking alcohol. As stated earlier in this book, stopping drinking is one of the most important things you can do to limit the liver damage caused by the hepatitis C virus.

In addition to providing my initial diagnosis, western medicine has also given me information about the damage the hepatitis C virus (HCV) has caused in my liver. My first liver biopsy was done shortly after my diagnosis and revealed not only how much damage my liver had sustained, but also helped me understand how much time I had to try different treatment options.

I use western medicine for monthly blood tests to determine my liver enzyme levels and viral load. In my opinion, western medicine does the best job of gathering data regarding disease progression, how a person is affected by the disease, and the length of time between various stages. All of this information was and continues to be very important to me as I make decisions regarding my treatment.

I would like to share with you my ALT, AST, and viral load test results over time. I am sharing this information because people do not generally share their medical data. I hope that by sharing my medical information, other people will feel less afraid to do the same.

The tests shown in the following graphs were performed at different laboratories. It is important to be aware of the fact that each testing laboratory has its own range of normal values for each test. A laboratory’s normal value range means that the majority of people in good health tested by that laboratory have values within this range. Another fact to be aware of is that a laboratory may periodically change their normal ranges. Therefore, in order to know whether your test results are normal or abnormal, you have to know the testing laboratory’s normal ranges for those tests at the time you were tested. I have found it is easiest for me to get a copy of the laboratory report. The reports have the normal ranges listed for each test, making it easier to interpret the results.

The tricolor ALT and AST graphs show how far above or below the upper limit of the normal range each test result was. This means the blue and red bars above zero represent test results that were higher than the upper limit of the normal range. The higher the bar, the further out of the normal range the test result was. The green bars below zero represent test results that were in the normal range. The single color AST and AST graphs show the absolute (reported) values for these liver enzymes over time. These graphs show the sizable fluctuations in my liver enzymes over time.

 

 

The viral load graphs shows actual test results since there is no normal range for HCV in the blood. Any detectable virus is abnormal. There are two graphs because different testing methods have been used.

BLUE results using Heptimax™; GREEN results using another PCR test.


 Important Note: Viral load testing performed using different testing methods gives different results. Notice how much higher the viral loads are once my laboratory changed from a PCR test to their own high sensitivity test called the Heptimax™. At first, I was very worried. But after discussing it with my doctor, I realized that the difference was the testing method not something happening with the status of my HCV infection. For more information about viral load testing, see Chapter 5, Laboratory Tests and Procedures.

The next graph shows my AST, ALT, and HCV viral load levels over time. While HCV viral load has not been linked to disease progression or liver disease status, it is interesting to note how these values tend to ebb and peak in relationship to one another. This graph is included for your information only. I include it to encourage the open exchange of information that may one-day lead to new discoveries in our understanding of chronic hepatitis C.

My treatment approach is an integrated approach. My primary care doctor is an allopathic doctor (an MD) who practices integrated medicine. He has not only been very supportive of my treatment choices, but actively works with me to find alternative treatment options. He is open to alternative treatment options and dedicated to determining the effectiveness of various treatments. We are interested in determining the effect of various treatments on: 1) reducing and/or eliminating liver inflammation, and 2) clearing the virus. We agree that in the end, we want treatments that will not only make me feel better, but that can also be shown to be effective through improvements in my test results. I have chosen a treatment approach that integrates western, Chinese, homeopathic, and naturopathic medicine and various forms of bodywork, all of which are supported and encouraged by my primary care doctor.

What I Didn't Like

I get my ALT, AST, and viral load levels tested every month. Unfortunately, I have come to find out these tests do not mean much. ALT and AST levels are indicators of liver cell damage, but do not tell you anything about liver cell repair or replacement. As such, these tests do not tell me if my liver is getting better or worse. My viral load levels have varied from 295,000 to 6,000,000 with most of the measurements in the 500,000 to 1,500,000 range. It took me a long time to understand that these differences in viral load are relatively insignificant since I am not on interferon-based therapy.

My first liver biopsy was done shortly after I was diagnosed. I had another biopsy, two and a half years after the first one. I had great hopes that the second biopsy would tell me definitively if my liver disease had improved or gotten worse since my diagnosis. Unfortunately, I did not get the definitive answer I was seeking.

Three different doctors reviewed my liver biopsy slides to look for any changes. One said there was slightly more fibrosis, while a second determined the level of fibrosis was unchanged. A third pathologist felt it could not be determined if the fibrosis was worse because of sampling errors. All three did agree that there was less inflammation present in the second biopsy. I was very disappointed that there was no clear consensus on the status of my disease. When speaking with one of the doctors about my frustration over this lack of consensus, he told me, “It’s just not that good of a test. It is not that definitive.” Although a liver biopsy is the best test we currently have to determine what is happening in the liver, it is not the definitive test everyone wishes it could be. One of the major projects of our brainstorming team is to figure out better noninvasive techniques to determine what is going on in the liver. The key to doing this will likely be through western medicine, though insights into how new technology might be used may come from non-western medical practitioners.

Ironically, it was because of the information I obtained through western medical tests that I have decided not to use any of the western medicine treatment options at this point. I reasoned that if my first liver biopsy showed that I had Stage II (out of IV) fibrosis while I was drinking 10-12 glasses of wine or beer per week, I could slow the progression of the disease considerably if I stopped drinking altogether. And if that was the case, I probably had plenty of time to review my options. It is my opinion that, if you have a strong immune system, quit drinking alcohol, and significantly adjust your diet, progression of liver disease can be significantly slowed. Of course, I do not know this to be true, but it makes sense to me based on all the data and statistics I have reviewed.

As I try to figure out where I am in terms of my disease, I consider the following two graphs.

If I had not been fortunate enough to find out I have hepatitis C, I would be moving somewhere along the line on the graph on the left. But since I was fortunate enough to be diagnosed, I have made a number of lifestyle changes in an effort to slow the progression of the disease as seen in the graph on the right. The only problem is I do not know how my lifestyle changes have shifted my personal disease progression. Logically, it seems unlikely that I am on line A. But whether I am now on line B, C, or D, no one knows. I had hoped when I had my second liver biopsy that I would finally have enough information to be able to figure out what line I am on now. But since the results were inconclusive, I still do not know. What I do know is that my fibrosis is somewhere between stage I and III, and the inflammation in my liver seems to have decreased. The fact that I do not know how long I have had the virus makes it even harder to try to figure out where I am at in terms of my disease progression.

In short, I do not know whether what I am doing to treat my infection with hepatitis C is helping or not. It is possible that many of the decisions I have made will turn out to be a waste of time and money. Some could actually end up damaging my health. I ask you to read my story with the understanding that I have no proof that anything I have done has altered the course or progression of my infection. On the other hand, I have no proof that anything I have done has made my condition worse either. And with the many lifestyle changes I have made, I feel better and healthier than I have ever felt in my adult life. Nonetheless, what is right for me could be completely wrong for you or someone else.

When considering interferon-based treatment, I could not get comfortable with the side effects it seems to produce in so many people. Further, I have found no clinical data on the complications and the long-term effects of these treatments. However, in my discussions with people along the way, I have heard a number of anecdotal stories from people who have had other illnesses come up once they started interferon therapy. With no clinical studies, it is impossible to know whether interferon therapy had anything to do with the sudden onset of these illnesses.

For now, I have chosen to hold off on interferon-based therapy. This may be a mistake, but the decision is very clear to me at this time. I have a number of reasons for making my decision. First, my disease appears to be stable at this point, so I feel I have time. By this, I mean that I feel no urgent need to begin a therapy about which I am uncertain. Further, interferon-based therapies are rapidly improving. The success rates of clearing the virus are going up; the length of treatment for non-responders is shortening. With these rapid advances, if I ever do decide to take this form of treatment, I will probably receive a much better form of the therapy than I would have gotten had I taken interferon-based treatment when I was first diagnosed in early 1999. In addition, since I have never taken interferon-based treatment, I remain a good candidate for any future therapies that may be developed. This notion has been confirmed by several doctors specializing in HIV and AIDS who have told me they support my decision. I believe this is because many HIV and AIDS patients who took earlier treatments have experienced viral mutations that make current treatments ineffective or less effective than they are in treatment naïve patients. With the power of western medical research and rapid technological advances, I am excited about the future prospects for new and/or improved options.

I have had some negative experiences with western medicine. The first was with the specialist my doctor referred me to following my diagnosis. As I stated earlier, I was leaving for a long trip in two days. I placed a number of calls to the specialist just to discuss my diagnosis and what it meant. I talked to his assistant numerous times, but could not seem to get through to the doctor.

Finally, I got the assistant to agree to have the doctor call me on my cell phone in 15 minutes. There was a mix-up, and instead of calling me on my cell phone, the doctor called my house and spoke with my wife. All he said was that he would see me when I got back from my trip, and not to worry. I now know that this was not bad advice. But at the time, it was devastating not to be able to talk to someone knowledgeable about hepatitis C, what it meant for me, and what my next steps would be.

Even after I returned from my trip, it took me nearly three weeks to schedule an appointment to see the specialist. Once I did get to see him, he told me that my only real option was interferon-based therapy. We discussed other alternatives and diet. He said there might be something to milk thistle, but other than that, nothing else had proven scientific benefit. He told me diet did not matter. I questioned him about this since it was in conflict with everything I had read.

At the conclusion of my visit, the specialist agreed to my request for genotype testing, and suggested that I have a liver biopsy as soon as possible to which I agreed.

When I went in for the blood tests for my biopsy, I found out my genotype test had never been ordered. I explained the error to the doctor’s assistant and asked her to order the genotype test since it had not been done previously. She told me she could not do that since the doctor was out of town, and he had not ordered it on my chart. I explained that the doctor wanted me to consider interferon-based therapy and that genotype was an important factor. She told me she had 50 people on the interferon-based therapy and had only ordered this test once before.

Since different genotypes not only determine the length of treatment, but also the odds of success, this was critical information to me. I can only guess as to why the doctor did not order this test for all of his patients. My guess is that since he only considered one type of treatment, the odds of success were not very relevant.

The liver biopsy was described to me as a “routine” procedure. It would take about 15 minutes, I would then rest for another 15 minutes, be checked, wait around the hospital for a little while, and then have my wife take me home. I was advised pain in my shoulder was a potential side effect, and that I should refrain from strong physical activity for about a week.

The procedure itself went smoothly. The doctor told me to rest for about 15 minutes at which time they would check for bleeding. I soon began to have sharp pains over my liver that grew more and more intense. It turned out an artery had been nicked and I was bleeding internally. I was sent for a CT scan to determine the extent of my internal bleeding. The doctor told me this was a 1 in 1,000 occurrence.

My wife and I spent the night at the hospital. It was not until about four or five in the morning that the pain finally subsided enough for me to sleep. I was taking pain medication, but the biggest relief came when I asked for a bag of ice to reduce the swelling. As an aside, I want to mention that my second biopsy went very smoothly. I experienced only temporary sensitivity over the biopsy area that lasted for about a day.

Following my biopsy, the specialist called me on the phone, told me the results, and stated that he wanted me to start interferon-based therapy immediately. I told him I was still doing research and that I was not sure what I wanted to do. He immediately responded that it was fine to consider some of my “witchcraft remedies,” but he wanted to see me in a month, and he wanted to see my plan. I was horrified. I had mainly talked to him about diet and various supplements and to refer to these treatment options as “witchcraft” seemed very inappropriate.

However, this specialist did a very good thing for me. He made me mad enough that I did schedule an appointment with him in thirty days. At that time, I laid out a very detailed plan of how I intended to find information about various treatment options, and how I intended to treat myself in the interim. For this motivation, I am very grateful.

An area of western medicine that has always puzzled and frustrated me is the lack of consistent and thorough data collection. Western health care providers rely on scientifically conducted studies to assess the influence of specific medications, treatments, and lifestyle practices on the course of a disease or condition. These studies include clinical trials, surveys, case studies, and other research methods. Treatments and other health related practices are promoted or rejected based on the results of clinical studies and observations.

Western medicine relies on scientifically collected evidence, yet it seems there are many missed opportunities to collect this crucial information with respect to hepatitis C. While there are numerous clinical trials involving medications to treat hepatitis C, these trials often fail to collect detailed information about participants' medical histories and lifestyles, factors that may influence responsiveness to therapy. For example, diet, smoking history, exercise practices, and the use of nutritional supplements may theoretically influence response to therapy. However, information about these factors is often not collected. It strikes me that medical providers caring for people with hepatitis C are not taking advantage of the opportunities available to learn about how factors other than medications influence the course of hepatitis C.

A related topic has to do with the focus of western medical research questions. In medical research, two types of errors can occur.

type I error

A study suggests a difference in outcomes between two or more treatments/practices when in fact there is no difference. This is also called a false positive. If a type I error is made, researchers conclude the drug or treatment being tested is effective when in fact it is not.

type II error

A study finds no difference between two or more treatments/practices when in fact there is a difference. This is also called a false negative. If a type II error is made, researchers conclude the drug or treatment being tested is not effective when in fact it is.

Researchers are generally far more concerned with preventing type I errors (false positives) than type II errors (false negatives). However, in my opinion, concluding a treatment is ineffective when in fact it may be of benefit is also a grievous error.

Consider diet as an example. The western doctors I have encountered have been hesitant to recommend dietary changes such as limiting fat intake, eliminating or limiting additives and preservatives, and decreasing refined grains and sugars. The reason I've been given for this hesitation is that there have been no clinical trials to prove that dietary changes alter the course of chronic hepatitis C. However, in my mind, just because such trials have not been conducted does not mean that dietary changes are not helpful. Throughout our culture, we are bombarded with messages telling us a healthy diet is important to our well-being. Therefore, it is illogical to think that adopting a healthier diet does not directly or indirectly improve not only overall health but also liver health, especially since the liver is intricately involved in processing what we eat. There is no potential harm from adopting a healthier diet. And at the very least, there is a theoretical basis for believing a healthy diet is beneficial. Therefore, it makes no sense to me that western medicine virtually ignores the potential role of diet among people with chronic hepatitis C. This example illustrates why I believe the general lack of concern over type II errors among western health care providers is a grievous oversight.

Complementary and Alternative Medicine (CAM)

Overview

What I Liked

When I was first diagnosed with hepatitis C, I mentally grouped all complementary and alternative medicine (CAM) treatments together. Now I understand that each CAM discipline is distinct. After studying CAM treatment options, I drew the following chart.

What I like about all CAM disciplines is that the underlying goal is to improve my overall health, and that by doing so, I will be better able to live with and fight the virus. I did not know if any of these treatments would be effective for me, but it seemed likely they could help me feel better and have more energy. It just made common sense to me that, while I was searching for treatment options, doing things that would make me feel better had little downside and lots of upside. The other aspect of CAM disciplines that I appreciated is that they required me to deal with all aspects of my health, not just my disease.

What I Didn't Like

The down-side of CAM approaches is that there is little scientific testing or documentation about the effects of the various prescribed treatments. There are few clinical trials, and some CAM practitioners do not keep statistics on their patients. This lack of scientific data makes it difficult for many western doctors to believe in or recommend CAM treatments, regardless of how beneficial they may be.

Several times in my search for my treatment options, I would meet a CAM practitioner who had claims of a treatment option with great success, only to have them disappear when I suggested we complete a survey of their patients and medical records to document their success.

Many CAM practitioners judge the effectiveness of a given therapy according to how the person is feeling. Depending on the situation, this may or may not be an accurate way of measuring the progress of the disease. Below is a brief summary of my experiences with my complementary and alternative medicine treatment choices.

Acupuncture

I had always wanted to try acupuncture, but never had a reason. My wife had successfully used acupuncture to cure tennis elbow in the past, which told me that there was probably something to it. I had also been fascinated by the fact that Chinese medicine uses a system for body energy channels that maps out similarly to the human circulatory system. Yet western medicine doesn’t acknowledge the Chinese energy system. The Chinese have been practicing acupuncture for thousands of years. But outside of this and the fact that they stuck needles in you, I knew nothing about acupuncture.

I started asking question about whether I should consider acupuncture, and if I did, who should I see. People I spoke with recommended I try acupuncture, and that I should see someone with years of experience, which probably meant someone who had received training in China. This lead me to a practitioner at the Chinese School of Medicine in Denver. With the thought that I was going to voluntarily let someone stick needles in my body, I went off to my first treatment.

What I Liked

When I first sat down, the acupuncturist asked me a few questions, then felt my pulse. I noticed he wasn’t counting. Then he asked me to stick out my tongue and he looked at it. It was clear to me that whatever I was about to experience, acupuncturists used different methods than western doctors to assess a person’s health.

I was delightfully surprised. Not only did the treatment not hurt, it was extremely relaxing. After the acupuncturist placed needles in various parts of my body, he told me to relax for a while. I fell into a deep sleep, having dreams and images come to mind. When the treatment was over, I felt as though I’d had a great massage. I decided if acupuncture made me this relaxed, it was probably a helpful thing to include in my treatment protocol.

For over three years, I have included monthly acupuncture treatments as part of my protocol. My western medical doctor is a trained acupuncturist and provides these treatments for me. Acupuncture has been one of the consistent treatments I have used throughout my journey with hepatitis C. Acupuncture helps me relax, and I feel it is beneficial to my overall health. In my experience, acupuncture does the best job of balancing and maintaining all my organ systems. My recommendation regarding acupuncture treatment for any of a wide variety of ailments is try it. See if you get the results you seek.

What I Didn't Like

As with other treatments, I have no western medical tests to prove that acupuncture has been beneficial to my overall health or altered the course of my infection.

Ayurvedic Medicine

Ayurvedic medicine originated in India thousands of years ago. It has been widely publicized in the United States in recent years by Depak Chopra. I had a basic understanding that Ayurvedic medicine involves the mind, body, and spirit, but at the time of my diagnosis, I knew little about how Ayurvedic medicine might be used to treat hepatitis C.

Early in my journey of determining my choices, I was attending a National Institutes of Health conference on CAM treatments for liver disease. A gentleman approached me and told me he had used Ayurvedic medicine as his primary therapy for hepatitis C. He told me that the virus had been undetectable for nine months. But after he stopped the treatment, the virus returned. Ayurvedic medicine had my attention! It was also interesting to me that a person with a pitta dosha (which most closely describes my body type) is prone to liver disorders. Pitta doshas are driven individuals.

What I Liked

I was interested in pursuing Ayurvedic medicine as a possible treatment option. I tried to find an experienced practitioner who had worked specifically with people who have hepatitis C. I was looking for someone available locally so that I would be able to visit on a regular basis. Unfortunately, I was unable to find such a practitioner in the Denver area.

I currently use information from Ayurvedic medicine to remind myself that I need to relax and practice moderation. Although I am not specifically using Ayurvedic medicine as one of my treatment options, in general, there seem to be many similarities between the Ayurvedic protocol and my current methods of treatment. Each involves following a restricted diet, working on the mental aspects of the disease, and practicing spiritual activities.

What I Didn't Like

The major drawback to Ayurvedic medicine for me has been the lack of an experienced practitioner in my area. I did meet with an Ayurvedic doctor from India who examined me and walked me through his treatment methods. Unfortunately, he explained that in order to treat me, I would need to be under his care for a few months in India. Given my personal circumstances, going to India for two months is not possible at the present time. Although I have been very impressed with everything I have learned about Ayurvedic medicine, I have not chosen it as a treatment approach because of the limitations I have described. I also have not seen documentation that Ayurvedic medicine results in either decreased liver inflammation or sustained viral clearance. This documentation may exist, but I have not seen it.

Body Work

Overview

There are many forms of body work that can help improve the body's immune system and/or reduce stress. I believe the benefits of different forms of body work vary depending on both the practitioner and the individual receiving the treatment. The forms of body work I have chosen to practice are those for which I found experienced practitioners who are also focused on developing themselves as healers. Each one practices some type of spiritual work for his or her personal benefit. What type of spiritual work they practice is not important to me.

Body work is one of the easiest things to test. Try a particular type of body work. Notice if you feel better or more relaxed. I will share with you the body work practices I use, but there are many other forms of body work that I have tried or heard about. I recommend you try different forms of body work to see what is most beneficial for you.

What I Liked

Bowen is a series of manipulations of the soft tissues of the body designed to open up your lymphatic system.

Years ago my mother came to Denver to receive Bowen work. My mother was suffering from Reflex Deficiency Syndrome in both feet. She was walking on crutches and getting steadily worse. She had been told she would never walk unassisted again. She had tried a number of different treatments before deciding to try Bowen to heal her feet. We will never know for sure what cured my mother, but after two Bowen treatments, she walked across the room. After her third treatment, she was able to walk normally. She was skiing six months later!

Because of my mother’s experience, I tried Bowen work for general health and enjoyed positive effect on my body. Before being diagnosed with hepatitis C, I received a Bowen treatment every 6 to 12 months for my general health. After my diagnosis, I decided to make Bowen work part of my regular treatment protocol. I currently have a Bowen treatment once a month.

I feel better after Bowen treatments. The treatments seem to open up my body and get the energy flowing more freely. The Bowen treatments seem very complementary to my chiropractic and acupuncture treatments as well. I recommend Bowen work to people for a wide variety of ailments.

What I Didn't Like

As with other CAM treatments, I have no medical tests to prove that Bowen treatments have produced any positive benefit. However, my personal experience is that Bowen work has been a beneficial part of my overall treatment protocol.

Chiropractic Medicine

What I Liked

Prior to my diagnosis with hepatitis C , I used chiropractic medicine intermittently for occasional back problems. But an experience I had just prior to my diagnosis led to me consider chiropractic therapy as part of my hepatitis C protocol.

I hadn’t had any back problems for years, so I hadn’t been to see my chiropractor for quite some time until just prior to being diagnosed with hepatitis C . About one month prior to my diagnosis, wife mentioned that our chiropractor had moved to a location near our home. I decided I would stop by and get an adjustment.

The chiropractor asked me a series of questions about how I was feeling and told me he wanted to see me on a regular basis. He questioned how much water I was drinking and told me my whole body felt dehydrated. Over the years, I had always been amazed at how he could tell about things going on in my body just by feeling my back. For example, if I drank too much alcohol the night before, he would always make a comment. Or, if work was particularly stressful, he would know.

Despite his past accuracy in diagnosing problem areas for me, I didn’t take his comments about my health very seriously. About a week later, my wife came back after a visit to the same chiropractor and told me he was really worried about me, that something was very wrong with my body. Although he didn’t know specifically what the problem was, he knew something was wrong. Again, I didn’t pay much attention, and did not go back to see him.

When I was diagnosed with hepatitis C three weeks later, he definitely had my attention!

I went to see my chiropractor and we spoke about treatment options. He told me studies have shown that chiropractic treatments are effective in stimulating the immune system and reducing stress. Because of my belief that anything I can do to help my body fight the virus with my own immune system is a good thing, I decided to add chiropractic treatments to my protocol. I usually have treatments once or twice per week.

Since beginning regular chiropractic treatments, my neck and back adjust much more easily than they did in the past. My posture has also improved. I feel better and attribute a portion of this effect to my chiropractic treatments. When I am particularly stressed, I have immediate relief following an adjustment. If nothing else, I believe this reduction in stress is probably helping my immune system and overall health.

What I Didn't Like

As with other treatments, I have no medical tests to prove that chiropractic care has improved my overall health or influenced the course of my infection with HCV.

Far Infrared Therapy

Far infrared (FIR) energy is one of the many forms of energy emitted by the sun. Far infrared therapy is based on the principle that FIR energy is deeply absorbed by the body. When FIR is applied to an area of the body, that area is warmed and the water molecules begin to vibrate. The combination of warmth and vibration causes increased circulation and clearing of toxins. FIR has been used for several years in Japan and various regions in Asia, but it is available on a very limited basis in the United States.

There are many types of FIR therapy devices including blankets, saunas, lamps which shine on large areas of the body, and paddles which focus FIR energy on smaller areas of the body. Because of the limited availability of this form of therapy and its relatively new introduction into the United States, I would caution you that it is extremely important that you find a skilled practitioner if you decide to try this form of therapy.

What I Liked

My western doctor suggested I try FIR therapy to improve my immune system, rectify imbalances, and eliminate toxins. At first, he used a paddle device to deliver the FIR energy to various parts of my body. Locations where imbalances existed became very warm when exposed to FIR energy, sometimes becoming painfully hot. My doctor and I decided this form of FIR was too intense for me. My FIR treatments are now delivered in an FIR sauna or with an FIR blanket. These delivery methods are not uncomfortable and leave me feeling energized and refreshed.

The addition of FIR therapy is a fairly recent change to my treatment protocol, so it is a bit too early to know with any certainty how this addition will affect my liver health and general health. However, both my doctor and I feel this form of therapy is worth further investigation.

At this point, I can tell you that I feel better since I began FIR treatments. I think the treatments have helped me, and I also feel more relaxed.

What I Didn't Like

The delivery of FIR with a paddle device was sometimes painfully hot. While the pain was only present when the device was on my skin, it was unpleasant.

As I mentioned, I have no proof that FIR therapy has improved my liver or overall health. However, from my limited experience, I believe FIR therapy has had beneficial effects on my health.

Exercise

What I Liked

Many scientific studies over the years have shown that moderate exercise stimulates the immune system, improves the cardiovascular system, strengthens bones and muscles, reduces stress, and improves sleep.

Exercise and athletics have always been part of my life. In high school, I played sports, including running track. In the late 80’s, I ran two marathons just to see if I could do it. For the last twenty years, I have run two or three times a week, and played basketball once a week. Physical activity has always been and continues to be an enjoyable part of my life.

After being diagnosed with hepatitis C, I read that exercise was good for maintaining health in people with hepatitis C. My Chinese medicine doctor advised me to do things in moderation, and to give up running and replace it with walking. I knew from my marathon days that too much exercise depletes the immune system and places a tremendous amount of stress on the entire body. Though I agreed with taking a more moderate approach, I decided not to give up running entirely. I reduced my 3-5 mile runs to 2-3 miles, two to three times per week. I have learned to do yoga for deep breathing and stimulating the immune system. Some mornings, instead of running, I jump on a mini-trampoline. I also practice qi gong (see my section on Spirituality). And, happily, I still play basketball once a week!

Since my diagnosis with hepatitis C, my exercise program is more varied and moderate. My approach to exercise now is primarily as a means to increase my energy and keep it flowing. And of course, I want to have fun, too.

I believe exercise keeps me healthy, full of energy, helps reduce stress, and increases my stamina. Whether it is the exercise or the combination of all the things I am doing for my health, I feel I am in better shape now than I was five years ago.

What I Didn't Like

Although I have no tests to prove that my exercise program has had any direct effects on my liver health, I am certain exercise plays at least some role in my overall feeling of good health.

Homeopathic Medicine

Like everyone else, from time to time, I have had some unusual experiences in my life. My introduction to homeopathic medicine was one of those unusual experiences. I share the following story with you to help you understand that at least for me, the healing powers of homeopathic treatment have been something more than just mind over matter.

I have been using homeopathic remedies since I was 19 years old. It began when my mother’s friend, who had just completed homeopathic medical school, was visiting our family. I had sprained my ankle a month earlier, and it had never quite healed. It often ached when I was inactive, and hurt a bit when I played basketball. After my mother’s friend helped her with some problem she was having, I jokingly asked him if he could fix a sprained ankle. To my surprise, he said he could.

He had me lay down on the floor, and he tested my strength while I held different tubes of homeopathic remedies. My arm was stronger with two of the remedies than with any of the others. This was pretty weird to a 19-year-old kid who not only did not believe in any of this stuff, but did not want to believe it either. The doctor gave me two tubes of homeopathic remedies. I was laughing while I put the remedies under my tongue. As I was driving back to my house with my friends who had witnessed this weird examination, we laughed about the whole experience.

About half an hour later, I started to have a strange sensation in my ankle as if the blood was racing through my ankle faster than through the rest of my body. One of my friends joked, “Hey Randy, is your ankle fixed yet?” I was almost embarrassed to admit the feeling I was having in my ankle.

In a couple of days, my ankle was fine with no further aching or pain. Despite the immediate results, I was still a disbeliever and rationalized that my ankle was probably ready to heal anyway.

About three months later, I tore a ligament in the other ankle. This injury was bad. I was on crutches and the ankle was three times its normal size. The doctors wanted to cast my ankle. But my friends who’d had the same injury and had gone with casts had not experienced full recoveries, so I was hesitant to go that route. I tried icing and heating several times every day. But after three weeks, I was still in intense pain with no sign of improvement.

I called the homeopathic doctor who had treated my previous ankle injury. He asked me to send him a few strands of my hair for analysis, and then he would send me some remedies. The day before I received the remedies, I had an appointment with a western doctor who could not believe my ankle was still swollen after five weeks. He strongly urged me to consider a cast, and I was. But I thought, I would give the homeopathic doctor a chance to work his “magic” first.

The next day, I received the homeopathic remedies, two substances to ingest and one to rub on my ankle. I could not believe the results! The swelling in my ankle started to go down by the next morning. Within a week, the injured ankle was only slightly larger than the other one. More importantly, I was walking again.

My ankle healed with no significant problems. I still play basketball to this day, and I have no problems with my ankles.

What I Liked

Following these experiences, I was no longer skeptical about homeopathic medicine. My personal experience over the years has been that in some situations, homeopathic medicine does nothing to help a condition. But at other times, it works wonders clearing things immediately or in half the normal time for me.

Regarding homeopathic treatment for hepatitis C, three individuals prescribe homeopathic and similar forms of energetic medicine for me. Both my medical intuitive and my BioScan practitioner must approve a given remedy before I take it. I take specific remedies until my medical intuitive and BioScan practitioner agree that I no longer need it.

I feel good, and continue to feel healthier over time. But given the various protocols I use, it is difficult to determine whether this is in any way attributable to my use of homeopathic remedies. In the end, it is just my opinion that homeopathy benefits my overall health, adding to my body’s ability to live with and fight HCV.

What I Didn't Like

I have been given many homeopathic supplements that were called, “hepatitis C remedies.” These remedies may be helping my body live with the virus. However, taking these remedies has not had any significant effect on my viral load, ALT, or AST levels. As with other CAM treatments, I have no proof that homeopathic treatments are helping me. But it is my opinion that homeopathy does contribute to my overall health.

Naturopathic Medicine

Naturopathic medicine uses the healing power of nature. Naturopaths treat the whole person, trying to support and promote the natural healing powers of the body. Many different therapies are used by naturopaths including herbs, supplements, homeopathic remedies, nutritional therapy, and various forms of body work. Naturopaths who are also licensed acupuncturists incorporate this form of therapy into their treatment regimens.

Given the lack of testing of CAM products, I had to figure out a way to determine which of the numerous herbs, supplements, and remedies would be right for me. I came up with a two-pronged approach, deciding to consult with two CAM practitioners. One is a naturopathic doctor who is also a medical intuitive. The other practitioner is trained in chiropractic medicine, but devotes most of his practice to a technology called a BioScan. The BioScan instrument is an FDA-registered biofeedback device that measures energy flow through the body's energy channels (acupuncture meridians) to identify imbalances. This technology is based on the Chinese medical theory that improper energy flow through the body can lead to imbalances, which if left untreated, can cause disease.

As I came across a product or supplement I was considering, I took it to each practitioner independently to see if he or she recommended the product for me. Every month or two, I took a large bag of supplements to each practitioner. To be honest, in the beginning I was very skeptical. However, over time I found that both practitioners agreed about 90% of the time about which products I did or did not need.

What I Liked

My exposure to naturopathic medicine started shortly after my diagnosis with hepatitis C. Although I found no information indicating naturopathic medicine could cure hepatitis C, I received recommendations from others who have hepatitis C. They told me they felt better after being under the care of a naturopath and taking the various vitamins, supplements, and homeopathic remedies. Based on these recommendations and my basic theory that everything I can do to make my body healthier to either live with or fight the virus is helpful, I decided to try it.

The first naturopath I met with took the time to explain naturopathic medicine to me. He asked me a series of questions about my life and general health. He then prescribed various supplements and prescribed a detoxification diet to clean out my system. He also suggested that I meet with a nutritionist to discuss my diet following the intense detoxification diet. The nutritionist basically agreed with the diet I had already been following (see my Nutrition and Diet section).

Shortly after starting on my naturopathic program, an acquaintance suggested I see a naturopathic practitioner who is also a medical intuitive. So with a significant amount of skepticism, I went off to see this woman.

When I got to the office, I was instructed to go in and lay down on the examination table in another room. The practitioner walked into the room and asked me how many bowel movements I have. I had just come off the detoxification diet and was a little constipated. I told her this information, thinking she probably started every visit like this. About half way through the visit, she asked me to write down some things that were making me very angry. I explained that I am a very calm person and did not really have anything to be angry about. This woman, whom I had spoken no more than 15 words to, proceeded to describe my personality very accurately - what I am like, how I think, how I bury my feelings. I felt naked. She definitely had my attention.

The next time I saw this practitioner, my bowel movements had become regular again. When she walked into the room, before I had said anything, she stated, "Well I'm glad we cleared that problem up."

I was placed on a yeast-free diet to clean my system. Since that time, I have consulted with this naturopathic doctor regularly.

The protocol I follow (a combination of diet, herbs, homeopathic remedies, and supplements) is generally a naturopathic approach. I continue to use the input of my medical intuitive and BioScan practitioner to determine what products I need at any given point in time. The supplements I use most frequently are:

Supplement
Frequency
Vitamin C
Always
Bee propolis
Always*
Greens (wheat grass or barley greens)
Always†
Chinese herbs (various)
Most of the time**
Flax seed oil
Most of the time
Homeopathic remedies
Most of the time**
Multiple vitamin (iron-free)
Most of the time
Milk thistle
Occasionally
Vitamin E
Occasionally
Thymus
Occasionally

* See Spirituality section
** Remedies and herbs used varies over time; I rarely take more than one of these supplements at a time.
†Greens were a constant part of my protocol for the first three years after my diagnosis. Now they are only occasionally included in my protocol as needed.

I have always subscribed to the theories that “less is more” and “moderation is the key.” I tend to take less of a product than might be recommended because I do not want to put too much into my body if it is not needed. This may be a mistake, but my theory has been that since my diet is so strict, it does not take much of a supplement to balance my system. This theory has been supported by my experience. When my medical intuitive and BioScan practitioner recommend a supplement, I generally found certain supplement, I have found that I need to take only small amounts before the imbalance is corrected and I am taken off the supplement.

In general, people with liver disease must be very careful with medications and supplements. Sometimes, out of frustration and/or fear, people with hepatitis C take large amounts of several different supplements. This may significantly strain the liver because it processes nearly every medicine and supplement we put into our bodies. Overloading the body with large amounts of medicines and supplements may overwhelm the liver and end up doing more harm than good. I urge you to check with your health care provider(s) before beginning any new supplement or medicine to determine:

if you need the supplement, and
what the appropriate dosage is for you.

To be clear, I am not advocating that you take lesser amounts of the medicines or supplements than your health care providers recommend for you. I am simply trying to point out that more is not always better, especially when it comes to liver diseases.

Although I have no medical tests to prove that my naturopathic treatment has improved my liver or overall health, I know that I feel better. And from time to time, my naturopath and BioScan practitioner have independently detected that I have a particular condition. For example, following a trip to Mexico, my liver enzymes suddenly went up to over five times the normal level. Both my naturopath and BioScan practitioner independently stated that I had picked up a parasite in Mexico. After a short treatment period, both independently concluded that the parasites were gone, and my liver enzymes came back down to their previous levels. I have experienced many similar situations where both CAM practitioners stated I had a certain condition, and after a period of time, they both independently stated that the condition had cleared up. This is hard to correlate with western medicine because we do not have tests that adequately show all the subtle changes that occur in the body.

What I Didn't Like

I feel it is important to add a note of caution here about some of the many products marketed to people with hepatitis C. I have taken many of these products to my naturopath and BioScan practitioner. Both agree that many of these products may provide an initial boost of energy, but that the products should not be taken long-term. If taken long-term, many of these products have the potential to eventually start taking energy from the body. This experience of an initial boost of energy followed by a subsequent feeling of decreasing energy is fairly common among people who have taken some of these products.

It is important to remember that manufacturers cannot patent an herb. Frequently, combinations of herbs and other supplements are packaged together to create a product that can be marketed as something unique. I encourage people considering natural products to first investigate the products. Try to find out if the products actually do what they claim to do.

Nutrition and Diet

When I was first diagnosed, much of the information I found on the role of diet in the treatment of hepatitis C was contradictory. I was unable to find any scientifically controlled studies that evaluated the role of diet in the treatment of hepatitis C. However, many books and other sources of information stressed the importance of good nutrition in managing hepatitis C. As I reviewed the role of diet in other diseases, I found that the general trend was toward a consensus that diet is important.

After considering various opinions, I decided that modifying my diet and nutrition was very important. Even if it did not help, I would still be healthier overall. In addition, since the liver is involved in processing everything we eat or drink, it makes sense to me that the less taxing the diet is on the liver, the more energy it will have to stay healthy and regenerate.

A recent study out of Australia showed a relationship between body weight and fibrosis among people with chronic hepatitis C. The study found the more overweight the individual, the more likely he or she was to have steatosis or fat deposits in the liver cells. Further, the amount of fat in the liver was related to the amount of fibrosis seen on liver biopsy. 1 This study reinforces the notion that nutrition and weight management are important factors to consider for people with chronic hepatitis C. I look forward to more studies on the relationship between diet and hepatitis C disease progression.

What I Liked

There is no doubt that my diet now is much healthier than it was before my diagnosis with hepatitis C. And since in a very literal way, we are what we eat, I believe my new diet has improved my overall health.

About one month after diagnosis, I met a woman who had recovered from pancreatic cancer seven years earlier. Her doctors had told her she was going to die and had stopped treating her. She started using diet as the major form of treatment for her disease. And today, she is a healthy, active person. No one knows what cured this woman of her pancreatic cancer, but she certainly feels that diet was a major part of her healing process.

My new acquaintance worked in a natural foods store. She spent about two hours walking my wife and me around the store, teaching us about foods and reading labels. She told us her theories regarding foods that were good for me and those to avoid. As we walked around the store, I was horrified. I wanted to keep my "normal" diet; I did not want to change. But we talked further, and I saw this woman's great life energy and realized changing my diet had little downside and lots of upside. About an hour into our two-hour walk around the store, I finally decided. Why not? Many foods are an acquired taste. I realized I could acquire tastes for different kinds of foods that might be healthier for me.

The example I use to help people understand this is milk. When I first changed from whole milk to 2% milk, I did not like the taste. Eventually, I switched to 1% milk, and at first, I did not like that change either. But now if I went back to drinking whole milk, I would hate it. It is far too rich and creamy for me. Our taste buds adjust. Now that I use rice milk instead of cow's milk on my cereal in the morning, I like the taste of rice milk and have adjusted my taste buds such that I wouldn't want to go back to cow's milk.

My current diet is a combination of what my natural foods acquaintance outlined for me with slight modifications based on advice from my naturopath and other health care providers.

My general dietary guidelines are:

No alcohol
No sugar
No fried foods
No coffee or colas
No cow's milk or dairy products
No food with preservatives or chemicals
No red meat
No shellfish
Eat organic products whenever possible

I try to eat things that are as fresh as possible, organically grown, and without chemicals or antibiotics. When you first hear this, you might wonder what you can eat. There are plenty of choices! It is just a matter of getting your taste buds to adjust.

One of the main aspects of my diet is that I juice raw vegetables and fruits. Three to five mornings per week, I have a 24-ounce drink of vegetables and fruits prepared with a Vitamix® juicer. The juicer is a modified blender in which the vegetables and fruits are ground with their pulp into a juice. I eat a wide variety of vegetables and fruits, but limit those with high sugar content. This is my way of eating raw vegetables and fruits on a regular basis.

The specifics of my diet since January 1999 are listed below.

Foods I Eat
Fish Mainly deep water fish such as salmon, tuna, sea bass, and halibut
Poultry Chicken and turkey - preferably free range, not smoked, and without the skin
Dairy Products Sheep and goat milk yogurts and cheeses
Rice cheeses
Fresh Vegetables Salad greens, carrots, spinach, cucumbers, broccoli, etc...
Juice fresh vegetables every morning, including wheat grass, using a Vitamix® juicer
Starchy Vegetables Potatoes, sweet potatoes, yams, pumpkin, acorn and butternut squash
Fresh Fruits (in moderation) Citrus fruits, kiwi, melons, apples, pears, peaches
Legumes Lentils, split peas, black-eyed peas, pinto beans, lima beans, kidney beans
Rice and grains
(limit white flour and wheat products)		 Pasta, couscous, quinoa, millet, kamut, spelt, aramath
Yeast-free breads, rice cakes, Crispini® crackers, tortillas and tortilla chips (baked)
Condiments Nuts and nut butters
Honey, maple syrup, apple butter (very limited)
Grape seed oil mayonnaise, organic salsa, guacamole (made without mayonnaise or vinegar), Bragg's Liquid Amino® (in place of soy sauce or teriyaki)
Flaxseed oil, virgin olive oil
Rice Dream® or almond milk for cereal
Beverages Eight glasses of bottled water daily (at least 64 ounces)
Unsweetened juices, filtered water
Herbal teas, including milk thistle and dandelion root, ginger, licorice, green and raja's cup

Food I Do Not Eat
Shellfish Lobster, shrimp, clams, mussels, etc.
Red Meats Beef, veal, and pork
Sweeteners Sugar
Artificial sweeteners such as Sweet-N-Low® and Nutrasweet®
Specific Beverages Alcohol including all beer, wine, hard liquor, or anything fermented
Soft drinks
Other Food Rules No chocolate
No canned fruits or vegetables
No chemicals, preservatives, including MSG

Food I Eat On a Very Limited Basis*
Cow Dairy Products Milk, cheeses, margarine, yogurt, cottage cheese, ice cream, etc.
Specific Condiments Ketchup, mustard, mayonnaise, soy sauce, Tabasco®, teriyaki, barbecue sauce (except organic made with apple cider vinegar)
Vinegar
Pickles
Specific Beverages Caffeinated or decaffeinated coffee
Guarana, chai, and other teas with caffeine
Other Caffeinated or decaffeinated coffee
Guarana, chai, and other teas with caffeine

*For the first three years after my diagnosis, I did not eat these foods. Now, I occasionally eat limited amounts of these foods.

For the first few years after my diagnosis, I strictly adhered to my diet because I wanted to cleanse my body of toxins and improve my overall health. Also, following a strict diet was easiest for me. I have learned over the years that it is easier for me to have lines I do not cross instead of leaving myself gray areas. I strongly believe that anything in excess is potentially harmful, and anything in moderation is probably okay. But it is difficult at times to know what is "moderation" is. Take alcohol as an example. What is moderation? We know alcohol consumption has a significant effect on the course of hepatitis C. But we do not know the effects of different amounts of alcohol. How much is safe? Is it a sip or maybe a glass of wine? How frequently can one safely drink? The simple truth is, we do not know. Before my diagnosis, I drank 8 to10 glasses of wine or beer per week, and I really enjoyed them. Now, I do not drink any alcohol, not even a sip. It is easier for me not to drink at all than to try to maintain my discipline if I open the door a crack. I follow the advice to draw the line and just say no. I believe it is easier if you do not let yourself get started, because once you start, it is hard to figure out where to stop.

For a long time, I applied this logic to all areas of my diet. No sugar meant absolutely no sugar. No cow dairy products meant absolutely no cow dairy products, etc. A Chinese medicine practitioner advised me that I should pick one day each week to eat whatever I want. His theory is that since a healthy liver is about flowing with life, I should not be so rigid with my diet. Some of my other health care providers have also stated that I should feel free to modify my diet from time to time, if I do so in moderation. I agree with them. During the last year or so, I have been less stringent with my diet, meaning I adhere to it 80-90% of the time. However, even when I vary my diet, I still avoid sugar, alcohol, artificial sweeteners, shellfish, beef, and pork.

I have learned to enjoy my diet and make it part of my daily life. I am very fortunate in that my wife is an angel! She makes it so easy to eat well. Every morning she gets up and makes my morning vegetable/fruit drink and my lunch. She takes the time to purchase fresh organic vegetables and foods. Without my wife's help, I could never maintain my diet as well as I do.

In his later years, my father often joked, "If I knew I was going to live this long, I would have taken better care of myself." Unfortunately, this is a reality for all of us. The better we care for ourselves on a daily basis, the less likely we are to have to deal with aches, pains, and more serious ailments as we age. It makes sense to me that what we put into our bodies matters! My recommendation to everyone is to eat as well as you can. If you do, you will probably feel better and be healthier.

What I Didn't Like

People sometime ask me what I miss the most about my previous diet. My reply is simple: the convenience. The foods I eat taste fine. But it takes time to prepare the food, and to anticipate my food needs when I am traveling or doing various activities around town. Again, this is where I am very fortunate to have the support of my wife. Her constant care preparing and making foods available make my diet very easy to follow. If I was not so blessed with my wonderful wife, I may have had to make other choices. I am also blessed in that I can afford to buy organic foods and high quality fish, chicken, and turkey. I know for many individuals, this is not an option.

I do not know whether my dietary changes will alter my course with hepatitis C. But I can tell you that I feel healthier and have more energy now than I did when I was eating as I used to.

Spirituality

I have never been a religious man, but I have always believed there is a universal spiritual power. I never spent any real time developing my spiritual side. I had begun to pray just before my diagnosis with hepatitis C, but it was only to help someone who was sick. After I was diagnosed with hepatitis C, I found many of the books I read and individual health care practitioners I spoke with talked about developing a spiritual practice.

I made the decision to explore a spiritual practice, but not because I was afraid of dying. Within a month or so of my diagnosis, I understood that I could live with this disease a long time. So my decision to explore a spiritual practice was borne of a desire to heal. Once I got started, my practice grew and took on a life of its own.

I practice various forms of qi gong (a Chinese method of developing spirituality). I also practice two forms of yoga, astanga and bikram. Astanga yoga is a rather strenuous form of yoga that is intended to realign and detoxify the physical body. The poses require very focused concentration that bring the mind and body into synch with one another. Bikram yoga is practiced in a heated room to facilitate profuse sweating. The heat is used to bring about deeper stretching, prevent injuries, and reduce stress and tension. Bikram yoga is designed to build strength, flexibility, balance, and mental focus. In addition, I sometimes meditate using either an "ahh" sound or an "ohm" sound.

I recommend any of these activities for people looking to improve their general health and/or to develop their spirituality. As with other forms of therapy, I recommend that you work with experienced practitioners to gain the greatest benefits from these practices.

What I Liked

Spirituality has opened my eyes to a world I barely acknowledged before. I believe each person has his or her own spiritual journey. I do not think it matters what type of spirituality you practice, as long as it works for you and you are continuing to grow.

I want to share a couple of truly amazing things that have happened to me. To be honest, they are pretty strange. So as I sat down to write these incidents, I hesitated because I realize they may sound quite weird to many of you. The fact is, I thought they were very strange when they happened to me. But they did happen to me - a very normal guy, with a very normal job, and a very normal life. In considering whether to share my experiences, I realized that in all likelihood, I am not the only person who has had these kinds of strange, even weird, experiences. I am hoping that by sharing my experiences with you, maybe I will help you understand you are not "the only one." And maybe it will help us all understand how much more in tune with life we can be if we pay closer attention to our spirituality.

The first experience that really opened my eyes to my spiritual side and truly shook me up was a dream. In the dream, someone and I were digging up a man who died of liver disease. He had been buried in the 1950's. As we reached the part of the grave that held his casket, I noticed there was a piece of paper on top. As I reached for the piece of paper, a ghost came out of the casket, grabbed me by the ankles, carried me across a room, and dumped me on a couch.

I turned to the ghost and asked, "Are you mad at me?"

The ghost responded, "No."

"Are you trying to help me?" I asked.

The ghost said, "Yes." Then it said, "Take this."

"What is it?" I asked.

"Bee propolis." the ghost responded.

Then I woke up. Immediately I knew this was no ordinary dream. It was so clear and vivid. And I was a little freaked out. I was up in the mountains for the weekend when I had the dream, but I was very curious to research bee propolis on the Internet to see what it was about. I had heard of it, so I knew it existed, but that was about it.

When I returned home, I looked up bee propolis on the Internet. The first article explained that bee propolis is a substance bees use to fight off viruses. Now I was really freaked out. But I was also convinced that this message was not an accident or some kind of weird coincidence.

I immediately went to the store and purchased all the different types of bee propolis I could find. I took them to my medical intuitive/naturopath and my BioScan practitioner. And sure enough, both independently confirmed that I should be taking bee propolis. Other than vitamin C, it is the only substance that is always part of their recommended protocol.

Ultimately, I think there will be something more to the message than just taking bee propolis, but that part of the journey has yet to become apparent.

So now you ask, "What does this have to do with spirituality?" My answer is that I do not think it is an accident that as I started to practice more spirituality in my life, things like this started happening to me. Many other little things started to happen, too, such as knowing that someone was pregnant or had died without being told. In so many ways, I am much more aware of the world around me.

The second significant spiritual event happened during a meditation. Someone told me that if you pray with emotion it has a lot more effect than if you just pray. I was lying on the floor meditating one day when I decided to do it with emotion. Suddenly, my body started shaking all over. Again, I was freaked out. I could stop the shaking by stopping my meditation. But when I started meditating again, the shaking resumed.

It was clear to me that this, too, was no accident. I have made this shaking meditation part of my spiritual work. I can now do my shaking meditation by just starting to breathe deeply.

I believe my spiritual practice is helping me develop into a better person in many subtle ways. I also believe my spiritual practice has improved my health.

What I Didn't Like

I can't prove that any particular aspects of my health have improved based on my spiritual practice. But I can say that the development of my spiritual practice is the greatest gift I have received from my hepatitis C.

Stress Management and Mental Aspects of the Disease

It is well documented that stress reduces the strength of the immune system. It is my belief that everything I can do to improve my immune system will help me live with and fight HCV. This is an important area of my health care. The two main areas of stress I have to deal with come from my work and from the mental aspe