My Integrative Strategies for Managing Hepatitis C
August 13, 2015
A little over 30 years ago, I had moved to San Francisco. I left a band and halfheartedly started doing some performance art and a bit more enthusiastically started using injected drugs, mostly heroin. It took about eight years before I finally let go of it. Somehow, despite being gay and in San Francisco at the beginning of the HIV pandemic, I acquired hepatitis C (HCV), but not HIV. Now, as I am likely to join the growing group of fortunate people who have been cured of chronic HCV thanks to a new era of treatment, I am reflecting on how activism-honed strategies of complementary care helped me to preserve my health in order to be able to reach this day.
My HCV genotype is 1A. For many years, it was considered harder to treat, with a lower likelihood of a sustained viral response (SVR) -- which is considered being cured -- when using alpha interferon or, even later, a combination of pegylated interferon and ribavirin. The low likelihood of success, the 48 weeks of injections and the horrific side effects persuaded me to wait. In addition, I was not too concerned since some data I saw suggested that not everyone with HCV goes on to develop cirrhosis.
However, I wasn't about to just wait for the disease to progress. Part of giving up drugs was knowing I wanted to do something more with my life. Face it, the drug life is repetitive and ultimately incredibly boring.
In 1989, I moved back to NYC after living for a couple of years in Montreal. A friend asked me if I wanted to go to an ACT UP meeting. I entered a world populated by some of the most incredibly smart, marvelous, brave and beautiful people I have ever had the privilege of knowing. Far too many of whom died over the next six years before antiretroviral combinations started to dramatically slow the rate of death from AIDS.
In that time, I worked with the Treatment & Data Committee (T&D). T&D helped to train some of the sharpest minds in the activist world. We learned how to read journal articles, studied clinical trial design, and learned about the way government agencies (like the Centers for Disease Control and Prevention, the Food and Drug Administration and the National Institutes of Health) operate. We had a sub-group of T&D that studied the pathogenesis of HIV disease -- specifically, how HIV infection results in the development of AIDS. It was a crash course born out of desperation.
As part of that effort, I started putting together a chart that listed the drugs for HIV (at that time, they were AZT, ddI, ddC, and some of the early non-nucleoside reverse transcriptase inhibitors -- d4T came a bit later). A section of the chart was devoted to drugs used to treat opportunistic infections (OIs): Kaposi's sarcoma, Pneumocystis, MAI/MAC, TB, cryptosporidiosis, microsporidiosis, toxoplasmosis, CMV, herpes, EBV, PML -- the list still instills a certain horror in me and acts as a reminder of friends who suffered, and many of whom died, from these OIs. Wasting and neurological diseases were also included in the chart as direct effects of HIV.
We also included sections on nutrition and so-called alternative medicine approaches. Back in the early days, they truly were the alternative for many who held AZT in low esteem.
Studying HIV and the way it causes disease made it a bit easier for me to begin to get a handle on how HCV winds up damaging the liver.
As the chart evolved, I wound up putting nutrition first. Even then there was some evidence that nutrition might help slow disease progression and offset weight loss and wasting. Nutrition was also a way for people to begin to empower themselves, focusing on the choices they would make in foods and drink and how to consider using supplements and monitoring their effects.
With HCV, it's not the direct effects of HCV infection of the liver cells that cause damage to the liver, but rather the excessive and inflammatory immune response to that infection that causes scarring, known as fibrosis, that stiffens the liver. When scarring expands to encompass the whole liver that is when cirrhosis arises. This increases the risk of developing hepatocellular carcinoma (liver cancer).
Fred Bingham and friends started the Direct AIDS Alternative Information Resources (DAAIR) in the early 90s to begin to investigate more closely the benefits, limitations and effects of a wide range of alternative medicine. In those early desperate days, it was pretty clear to a lot of us that drugs like AZT, ddI and ddC weren't doing much to prolong survival.
Seeing this -- and also beginning to work more closely with DAAIR -- I realized there were a lot of ways that people could intervene that could slow HCV disease progression.
One important intervention was maintaining the body's homeostasis (that's where the body maintains the optimal internal conditions it needs for survival; for example, keeping the internal temperature stable at 98.6°F) by assuring adequate levels of the intracellular antioxidant, glutathione. HCV infection decreases glutathione to levels that result in hepatic damage. The idea was that by increasing one's intake of glutathione, one could prevent that damage. While controversy existed over whether glutathione itself was absorbed by the body (it turns out that it is), we did know that taking the main precursor, N-acetylcysteine (NAC), as an oral pill could help restore low levels of glutathione.
My research found that these and other supplements, along with a robust multivitamin, can help to provide the fuel and tools the body needs for proper metabolism.
Along the way, I also studied a bit about Chinese, Tibetan, Ayurvedic and Siddha medicine and found practitioners that I trusted who were working with people with HIV and HCV. I incorporated some of the agents and formulae into my regimen.
In 1999, I underwent a liver biopsy and found that I had early stage liver disease. Even then, my doctor was gung ho to get me on treatment, but I declined. I knew that there was hope that better treatments would come along that didn't require interferon!
At the time, my markers for liver function, like ALT and AST, were consistently elevated. My viral load tests showed anywhere from 300,000 to 900,000 copies: high, but moderately so.
Over the past few years, my ALT and AST normalized or were just a few points above the high end. My viral load plummeted to between 3,000 and 12,000, and this was measured using different labs. I cannot say any one agent was responsible, nor would I. And I cannot say what the absolute best combination is, but this is why a holistic and comprehensive approach should be considered and not minimized.
My last viral load in February 2015 had gone up a bit to 69,000 -- still very low. Sonograms and FibroScan tests showed no damage to the liver and two separate technicians coincidentally told me they'd grade it F0 (no damage), but the scale was F0-F1.
Today, there are viable options for curing HCV. In my view, there is no reason -- except corporate greed -- that people are being denied access. Many of those without access have far worse disease than I have. If I can tell the difference with mild disease, I can only imagine how vital treatment is for those with advancing disease and/or coinfections like HIV. But everyone should be cured as a public health measure. It would also feel great to get rid of this guest. Ultimately, these new drugs can eradicate the virus from the planet if we have the political will and generics, which can cost as little as $129 for 12 weeks for a two-drug regimen.
But in the meantime, supplemental treatment is available that could help slow disease progression and restore the liver, which is a very regenerative organ. The protocol I used is probably more than most need or can afford, but some of it could be used when seeking good effects that can be monitored with bloodwork and scans.
And for those that DO get treatment and are cured (i.e., an undetectable viral load at week 12), I think there are a lot of ways to help them get even a damaged liver back to robust health. Some of the things I am doing now toward that goal include Liver Detox by Pacific Biologics and Liver Optimizer by Jarrow.
To your health -- and to a cure for ALL.
Top 10 Things Public Health Practitioners, Government Policymakers and Community Advocates Need to Do to Move to the End of HIV and HCV
This article was provided by TheBody.
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