A publication of Vietnam Veterans of America, Inc. ®
An organization chartered by the U.S. Congress
June 2001/July 2001
Killing the Host to Stop the Virus?
Alternative Strategies to Combat Hepatitis C
By William Triplett
Many Vietnam veterans have only begun to learn that they may be prey to a slow, silent killer – hepatitis C. Health experts estimate that some 3 million Americans have this potentially fatal virus, which attacks the liver and for a while has been the number-one cause of liver transplants in the United States. But Vietnam veterans – particularly combat vets, because of the way the disease is spread – are far more likely to be infected than the general population.
The hepatitis C virus (HCV) is blood-borne, and Vietnam combat vets were subjected to an extraordinary amount of blood exposure, usually through transfusion. HCV was isolated and identified only within the last 12 years; the blood supply during the war was not screened for it.
But a veteran didn’t necessarily have to be wounded and transfused to contract HCV. "My worst case was a man who had the unpleasant job of sending dead men home from the war," says Dr. Bennet Cecil, an HCV specialist in Louisville, Ky. "He was the one who had to put them in body bags, and he got hepatitis C from that. He later got cirrhosis and died from liver cancer not long ago."
Not everyone who has HCV dies from it. Indeed, statistics compiled by the Centers for Disease Control show that fewer than three percent of infected people do. About 80 percent of sufferers experience only mild symptoms for a long time because HCV usually takes 20-to-30 years to do serious damage. Those infected in mid-life or later will likely never experience problems and will die of something unrelated to HCV. But the majority of infected Vietnam veterans were exposed more than 30 years ago. For them, the clock is ticking.
The Department of Veterans Affairs, while aware of the threat posed by HCV to the Vietnam generation, has been slow to respond. "The VA has talked the talk but largely has not walked the walk," says Dr. Cecil, who works two days every week at the Louisville VA Medical Center. "A lot of veterans are having difficulty getting treatment. We have people coming from other [VAMCs] because the doctors there won’t treat them."
Part of the reason has been that the standard treatment for HCV is expensive and ostensibly beyond the VA’s budget. Yet, although Congress recently allotted funds to the VA specifically for HCV treatment, most VAMCs continue to treat relatively few HCV-infected veterans.
Complicating matters further is the fact that the standard treatment works for relatively few people taking it, and for some genotypes, not at all. Alternative treatments exist, but because the U.S. Food and Drug Administration doesn’t recognize them, the VA will neither use them nor pay for veterans to use them. Veterans are left hoping that medical science will develop something more effective before HCV starts destroying one of their body’s most important organs, or they can seek alternative treatment on their own.
The first thing to do is to get tested. This requires specifically asking for an HCV test, which is available through the VA health care system. Veterans can call their nearest VAMC or health clinic for more information or go online to www.va.gov/hepatitisc. For detailed information and background on HCV, call the CDC’s hotline at 1-888-4-HEP-CDC.
The VA recommends testing for veterans who meet any of the following criteria:
you are a Vietnam-era veteran
you had a blood transfusion before 1992
you have injected drugs (past or present)
your skin or mucous membranes have been exposed to another person's blood
you have had multiple sexual partners
you were on hemodialysis
you had tattoos or repeated body piercings
you have a history of using cocaine
you have unexplained liver disease
you have unexplained/abnormal ALT levels
you have a history of drinking alcohol excessively
The VA is not alone in recommending that veterans be tested. In a recent interview with Health Talk Interactive, Dr. Adrian DiBisceglie, medical director of the American Liver Foundation and professor of internal medicine at St. Louis University, said, "We are interested in encouraging veterans to be tested, particularly veterans of the Vietnam era as it turns out hepatitis C is very common among this group."
If the test, which looks for the presence of HCV antibodies in the blood, is positive, veterans should then undergo an HCV-RNA test, which minutely measures the level of the virus, or "viral load," in the system. A veteran with a viral load of less than 50 is considered to be uninfected, even with a positive HCV antibody test.
A viral load of more than 50 should then trigger a test to determine the genotype of the virus. This is critical, for the virus has six known genotypes, and generally only those people infected with genotype-2 or -3 tend to respond to the standard medical treatment. Whatever the genotype, however, infected veterans should then have a complete assessment of their health performed because the standard treatment is toxic and can seriously harm those who might also be suffering from other health conditions.
For example, if an HCV patient also has heart disease, the HCV treatment can precipitate a heart attack. These patients should always have stress tests performed before undergoing HCV treatment.
Currently, HCV treatment consists of a combination therapy – interferon injections and ribavirin pills. Interferon is a protein that the human immune system uses to fight off infections. Of the two, interferon has the more deleterious side effects. It can cause body aches, fatigue, sleep problems, irritability, and feelings of deep depression possibly leading to suicide. Moreover, according to the web site www.holisticcancersolutions.com "An important side effect of interferon is worsening of liver disease with treatment, which can be severe and even fatal."
Ribavirin can damage red blood cells, and if enough are damaged, anemia can result. Anemia in an HCV patient with heart disease can lead to a heart attack.
More troubling than the side effects, however, is the relatively narrow profile of patients who respond to interferon and ribavirin. The majority are less than 45 years old, have only minimal fibrosis present in the liver, are for the most part female, and have either genotype-2 or -3. Most HCV cases in the U.S. are genotype-1A or -1B, the strains of HCV least likely to respond to standard treatment.
Nevertheless, Dr. Cecil argues that Vietnam veterans – only a handful of whom might respond to treatment, given the above parameters – should still be tested and seek treatment, if necessary. "There are so many exceptions to the rules that I don’t think people should use them to decide whether or not to be treated," he says. "I’ve got patients who are genotype-2 who do not respond, and they should. I’ve got other patients who are genotype-1, the genotype that usually doesn’t respond, [and their viral loads] go to undetectable in a month."
Dr. Cecil does acknowledge, though, that HCV patients on interferon and ribavirin should see significant results within 30 days. "If you’re not going down in your viral level by more than 90 percent every month, you’re not going to succeed." At that point the patient should either increase dosage – and possibly the toxicity of the side effects – or quit the therapy.
There are alternatives to the standard therapy, and VVA strongly recommends that HCV-infected veterans consider all of them before entering any kind of treatment. VVA also recommends that veterans carefully consider where they go for treatment. While the Veterans Administration has been reliably providing HCV antibody testing, there have been reports, and not just from Dr. Cecil, of the VA health system failing to do much of anything else.
In a recent letter to a VVA service representative, William F. Feeley, director of the VA Western New York Healthcare System, wrote that "evaluation of… genotypes and quantification of… viral loads… are excellent indicators of who will respond to treatment. I understand these expensive tests may have been denied to some veterans at other facilities."
Above all else, VVA believes veterans should be aware of as wide a range as possible of what is currently available regarding treatment of hepatitis C. What follows are the personal stories of some HCV patients who have tried the standard as well as alternative treatments. Also included is testimony from an acupuncturist who treats HCV patients.
Ramona L. Jones is a certified nutritional consultant, who, in response to her own hepatitis C, developed a cookbook for people with a diseased liver. One VA Medical Center has adopted her recommended diet. The book is available by calling her at 405-878-6644.
I was diagnosed in 1992, after feeling really bad for about six years. During that time, I’d gone to different doctors, and they all told me it was in my head. Some said I was depressed and put me on Prozac. I continued to have symptoms until finally I found a doctor, a general practitioner in San Antonio, who diagnosed hepatitis C. They think I got if from blood transfusions when I had open-heart surgery. Eighteen transfusions, all donated by GIs.
The GP said I was terminal and he couldn’t help me, so I told him he was terminal. He said he would send me to a specialist and said the only treatment he knew of at the time was interferon. So I did a little research about interferon before going to the specialist, and after that I decided I did not want to take the treatment.
It’s a poison. It’s like chemotherapy in that it kills the good with the bad. I couldn’t see putting myself through that. I’d already been through enough, and I couldn’t find anybody it had really helped. There were also a lot of long-term side effects, some of them permanent, so I just couldn’t see subjecting myself to further damage and being sicker than I already was.
So that’s how I got started into vitamins and herbs. I started studying them and found a couple doctors in San Antonio who are into natural alternatives, and one of them worked with me for two years, teaching me everything he knew.
I started treating myself, and within four months I had my liver enzymes in a normal range. I felt fine and could function a lot better. And I’ve been doing that ever since. I do still have hepatitis C but as far as they know, it’s dormant.
I was never tested for genotype, and it didn’t matter to me since it wasn’t going to change my [decision to use alternative treatment]. But I did have a [liver] biopsy recently. I was having my gall bladder removed, and the doctor did a liver biopsy without me knowing it. The biopsy showed no damage to the liver, and in fact, the fatty infiltrations that had been there five years ago were now gone and that the hepatitis was there but it was not doing anything.
The first thing about treating yourself is proper diet. You can take all the herbs and vitamins you want, but if you don’t follow proper diet you’re going in circles. Your goal is to take all the stress off the liver that you can, and if you eat improper foods you continue to stress the liver. Low fat, high fiber, and as much as possible organic foods. Foods that are not hard to digest. You need to keep the immune system boosted. The vital organs all work in conjunction with each other: If one’s stressed, they’re all stressed. So you have to pay attention to the whole body.
I was in Vietnam in 1969 in a naval security group on a swift boat doing electronic intercepts, and we got caught in a crossfire. A bullet hit the radio receiver and some shrapnel flew off, and I got a little piece of it in my leg. But the guy next to me had a major arterial wound and bled all over me. Because of that, the corpsman thought we were both seriously injured. I guess the corpsman had only been in-country 48 hours because he panicked and just stuck IV needles in both of us. When he started cleaning me off, he found that I wasn’t seriously wounded, and he pulled the IV. I think that’s maybe when I caught it, because I had my transplant in 1997, and if you count back the years – 28 – that’s about the right amount of time for hep C to do its damage.
I was diagnosed in 1983. I thought at the time I had some kind of infection because I was feeling weak and tired and felt like I had a flu. I went to see a doctor, who said I didn’t have the flu but something called hepatitis non-A, non-B. Hepatitis C was not identified until 1989.
They didn’t do anything for me at the time because there was nothing they could do except watch it. I changed doctors, and in 1991, I was put on one of the first trials of a new version of interferon. But I had a virulogic breakthrough in three months of a six-month protocol, meaning the virus had broken through the treatment and [the viral load] was climbing. So the doctor said no sense keeping me on interferon, and took me off it.
He had actually put me on Prednisone for three weeks. That probably contributed to the [breakthrough] because Prednisone is now contraindicated for use in people with hepatitis C. I also have genotype 1-A. The absolute worst is 1-B in terms of not responding to interferon, but 1-A is almost the same as 1-B as far as results go.
So I thought, well, gee, if this disease is progressing, well, my first diagnosis had shown mild fibrosis of the liver, the second had shown bridging fibrosis, which is the next stage up. Obviously the disease was progressing, so I asked if I was a candidate for a transplant. I was told no because of my substance-abuse history. The fact is this was five years after I had stopped using.
So I didn’t do anything until three years later when I noticed I was gaining weight even though I was eating a low-fat diet and trying to exercise. My legs were filling up with fluid and my gut was getting big. I saw another doctor, and he said I had pronounced cirrhosis, about 80 percent sclerotic liver. They said it was too late for interferon to do anything for me, so they’d just monitor me.
In 1996, I went into the hospital for a bacteriological infection, and a doctor came in and said he thought it was time I get listed for a transplant. So I went to Johns Hopkins hospital [in Baltimore] and was screened and listed that December, then was transplanted in June 1997.
Even with the transplant, I still have hepatitis C. I just had a biopsy a few weeks ago, and I have mild fibrosis and a pronounced inflammation, so it’s already attacking my new liver. In 1999, I went on a sort of combination of various forms of interferon. It was to be for six months, but again in three months I had another virulogical breakthrough. I’m hoping that the way of the future is to get away from interferon.
What I’m doing now is I watch my diet, I try to exercise as much as possible. I do fast-walking, and I try to get a lot of rest. On those days I feel real fatigued I just take a nap. My health right now is that I’m functioning. I’m not end-stage at all.
Nat Slayton is a Vietnam-era veteran who followed the advice and treatment VA doctors gave him. He is now sorry he did.
For about 15 years or so I'd been experiencing different types of rashes. They could appear as welts, as if someone had beat me with a whip. Or they could appear as scabs or redness on my face.
The only thing that ever worked for me was a huge dose of Benadryl. Sometimes I would be given Benadryl shots, which would knock me out completely for eight or ten hours.
I was complaining to a doctor at Bethesda Naval Hospital that this had been going on for a long time, and in 1998 he ran some tests. When they came back he said, "You have hepatitis C, and that's causing the skin rashes." During my service I had two incidents where I had blood transfusions. One was an automobile accident, and the other was a gunshot wound. Could have been either one of those where I caught hepatitis C.
Anyway, the Bethesda Naval doctor said the military wasn't treating hepatitis C at that time, so I scheduled an appointment with my VA doctor. I said I wanted to be tested for hepatitis C, and he asked why. I said because I'd been tested and had come up positive, and I need to be tested again. The VA tested me and I came up positive. Next they did a liver biopsy. And then they said they had a treatment for me. I said, "great."
They scheduled me for the liver clinic. I met with a doctor there who told me that since I was also being seen at the time by a mental-health specialist, I needed to get clearance from him before starting the treatment. Because sometimes the treatment - interferon - can cause severe depression. I got cleared for treatment and so started taking it.
At the time I was attending University of Maryland and was maintaining a 3.875 grade point average. I was kicking butt. I wasn't sure if it was the medication or maybe the stress of my life at the time - I was looking for a job and had family problems and other health problems - but suddenly I developed a serious, serious depression.
My doctor was asking me if I was having problems from the treatment, and I said, "Yes, the depression." So the dosage was cut in half. I didn't know then that genotype had anything to do with response to treatment. Anyway, this was about a month into it, and I was still feeling bad, even worse. Some days I could not get out of bed. My joints ached, I started sleeping in a separate room because I couldn't stand my wife touching me, it was terrible.
I stayed with the treatment, though, because sometimes my body takes a long time to react to medication and I felt that in the long term, this was going to be beneficial. My doctor agreed, so I went back up to the normal dosage. This was about two months into it now.
About the third month of treatment I met a nurse there, and she asked me how was I doing. I told her I was having all kinds of problems. She told me that normally these problems go away after about six weeks. I said my problems were escalating. She asked me what genotype I was. I said, "Genotype? What's that?"
She said your genotype determines whether this program is going to work for you or not. I asked my doctor for my genotype. She said it's in a separate database that she couldn't get to. She did say she'd have it by the next time I came in. I came back in two weeks and asked her about my genotype again. She gave me a runaround.
So I talked again with the nurse who first told me about it. I don't know how she did it, but she later told me I was 1-B. I asked what that meant. She said it was the least receptive to the medication I was on. I said, "What do you mean, least receptive? I was told the success rate was 30-40 percent." She said that was for other genotypes. "The success rate for your genotype is less than 10 percent." She also said my records showed I'd been originally diagnosed with hepatitis back in 1988! I'd gone to the VA for something, they'd taken a blood test, and it had come back positive. They'd never told me.
I was four months into the program. My GPA had plummeted to 2.5. My wife had threatened to leave me. My daughter didn't want me to come around. And now I was finding all this out.
During my last visit with the VA, they told me they were going to put in an application for me at National Institutes for Health, where they have a hepatitis C program using a different drug. There's a possibility I wouldn't be accepted because of my genotype, and because my condition is not severe enough, even though my doctor at Bethesda had told me that my viral load was a million-plus.
I'm in no treatment at the moment. I still don't know if I've been accepted into the NIH program. My VA doctor also told me that hepatitis C is "historical," meaning that if it did not get worse in the past, it won't in the future. I said, "How can you say that? Once you get a disease, if it goes untreated, it's probably going to get worse, right?" She told me not to worry.
I wish I could say something positive about the VA doctors. All of them appeared caring. My feeling now is that was a masquerade. I once thought they were acting in my best interest, but I don't believe so now.
Diana Donaldson maintains her own web site -- http://alternativehopeforhepc.com -- and has transformed her suffering from hepatitis C into passionate advocacy for alternative treatment. She also sells an alternative treatment package. Her toll-free number is 877-367-9875.
I was diagnosed three years ago, genotype 1-A. Most of us in the United States are 1-A or 1-B. When I'd heard that 1-A and 1-B are both very unresponsive to the standard treatment, the combination of interferon and ribavirin, I didn't want to do it.
For a lot of people taking the combo, their immune system gets worse. They'll get thyroid problems, worse mental fog problems, and it can lower your platelets, which clot your blood. Some new data I understand is linking autoimmune disease now with the combo treatment.
For me, my treatment consists of building up my immune system and creating an environment where the virus can't duplicate.
My package basically builds up the immune system and helps with energy levels because it helps you detox your liver. My enzymes were elevated before but on this program they've been totally normal for two years. There are a few doctors who are trained in both arenas of standard medicine and alternative treatments. For genotype-2 or -3, they'll recommend the combo treatment, but for those of us who are 1-A or -B, they say let's wait for something better medically to come along, but in the meantime let's clean up your diet, drink more water, and let's get you on herbs and supplements and anti-oxidants.
I started aggressively taking a powerful anti-oxidant called Micohydrin and other natural supplements. I also drink lots more water. Distilled water is best, but I switch back and forth during the week from regular bottled water to distilled. Cutting out most sugars has been important. Sugar can be hard for a challenged liver to process, as are red meats, fried foods and junk food and processed foods in general.
I started little by little eating more and more raw organic vegetables and fruits. I found, too, that natural, water-soluble vitamins are the best, and after research I believe in the quality of the supplements I'm taking. I understand now that certain minerals, herbs, and vitamins can be toxic so I read all labels. At the NIH Conference for Complementary and Alternative Medicine for Liver Disease that I attended last fall I was frightened to learn both iron and man-made vitamin A can be toxic, possibly [advancing] scar tissue if fibrosis or cirrhosis are already present.
I feel that day by day my liver and system are detoxing and my blood cells are getting the essential nutrients they need to create new and healthy blood cells and tissue. The liver is one of the organs that will regenerate, and nutritional products will support that. My skin is looking healthier, I have lots more energy, no more headaches, less aches and pains, and I'm feeling much better overall. My liver function tests have been normal now for some time including the enzyme levels.
Linda Miyoshi trained as a nurse but is now a practicing acupuncturist who treats people with hepatitis C.
In Chinese medicine, by that I mean acupuncture and herbal treatments, it’s not about killing the hepatitis C virus. It's about strengthening the body to be able to function well and not be debilitated by the virus. With acupuncture and Chinese herbs, we are able to normalize liver functions, which can be measured by Western blood tests, and mitigate the symptoms of hep C, so the person is able to live out his life.
Even if a person has a liver transplant, he will still carry the virus. Why not just take care of yourself with a much less invasive, gentle technique that has been around for centuries. Hepatitis and other liver health issues are endemic in China. That is why Chinese have so much experience dealing with liver disease. By treating each individual, not as a hep C patient, but looking at how hep C has affected their whole being, we can bring the person back to a better balance. Hep C affects more than just the liver. It can affect the spleen and kidney and cause other problems. With Chinese Medicine, even advanced disease may be able to be reversed.
All this is taken into consideration when planning treatment. There are protocols developed for Hep C treatment, using ear acupuncture, regular acupuncture, and specific herbal formulas, that help suppress the viral load, improve immune function, clear jaundice, normalize liver enzyme levels, reverse fibrosis, and improve cirrhosis. Fatigue is reduced, appetite is improved, headaches are relieved, as is liver pain. Antiviral treatment is not the top priority. The patient’s quality of life and stabilizing and optimizing organ function is more important in Chinese medicine.
These days, more and more people are turning to Chinese medicine to help them with this disease.
Dave Myers has been battling hepatitis C for almost 30 years. He, too, runs a support group for HCV patients.
I was in the Navy, in board-and-search patrol. This was 1967 through '71. Part of what you do on board-and-search is they give you a flak jacket, a .45, and a flashlight. You go below decks and pull off the little guys in the black pajamas. I was exposed to blood several times. I received cuts quite often below decks. I was also in an automobile accident in 1969. I ended up with three broken ribs and the other guy with me ended up on top of me with a lacerated forehead bleeding all over me.
So there are any number of ways I could have contracted hepatitis C. I was first diagnosed in 1973 with what they were then calling hepatitis non-A, non-B. I was experiencing a lot of nausea, my stool was almost white, and I was very fatigued often. I'd gone to a private hospital, a regular civilian doctor, but he couldn't really do anything for me because they really didn't know much about the disease then. Nobody did.
The VA never called me in on anything. I was told, and I quote, that I had "sub-acute chronic hepatitis," but that I was not contagious. So I thought I was just okay, that I'd just be monitored, and so I didn't take any interferon or anything because there was no sense of urgency about it. I kept drinking and partying and having a good time. It wasn't until 1991 that I found out I have hepatitis C. And ever since I've tried to teach people that you have to be your own advocate. If a doctor can't give you answers, go to another doctor, but that's hard within the VA system.
I was never genotyped in the VA. But I finally got to the point back in '73 that I hurt so bad that they decided to do a liver biopsy on me. They said that my gall bladder would have to come out eventually. Well, that didn't happen until 1995, and I had to fight with them to do a second liver biopsy. Now, they don't like to do biopsies, but without a liver biopsy, you're never really going to know [how far hepatitis C has progressed]. But by then I was too far gone. I had cirrhosis. I wasn't happy with the VA. I figure they should have been a little better in following up on people.
I'm now 100 percent disabled. I'm divorced and unemployable, so since I've basically got nothing, I've thought, why not go [back] to the VA system? I went to my local VA clinic and they just loved seeing me. "We're really glad you're here! We'll see you back in 14 months!" Fourteen months? What are you talking about? The woman there said they had a backup for that long. I said I hadn't come in for a sprained wrist but a terminal disorder. "Oh, you can drive down to the other clinic and wait there."
I am now about to go into in a program with an expert who works at Georgetown University Hospital. This is a VA program, but I'm doing it because of this expert. I trust him -- he doesn't work for the VA. If he wasn't involved, I wouldn't be doing it. I'll be taking what's called a maintenance dosage of interferon, a smaller dosage, of what they normally dispense. I'm told this helps reverse the fibrosis in the liver. I was finally genotyped: 1-A. One of the bad boys. I'm told I have two years to live, so I've got to do something.
E-mail us at TheVeteran@vva.org