HIV, Hepatitis B, You and Me
One Man's Story of HIV/Hepatitis Co-Infection
So today is my six-year anniversary. Anniversaries are a time to reflect. I wanted the occasion to be remembered, so I told a friend. "Today is my anniversary. Six years ago today I found out I had HIV." He laughed the laugh of an HIV-negative guy and wondered, "I don't know what to say. Congratulations? Are we supposed to celebrate?"
I don't know. I just made up this holiday -- should they have greeting cards for it? I tried to find humor in a sad situation, but why did it have to be all sad? What hasn't killed me has made me tougher, stronger and even more fabulous than before. It has not been all glamorous, but the best True Hollywood Story has its tragic parts.
It all began six years ago. I had found the perfect love. I had just gotten a promotion at work. I lived in a spacious, affordable Astoria apartment with a view of the Empire State Building from my bedroom window. Everything was going "too right." The time came to get another HIV-negative test to show my dream boy. Though I always used condoms, I tested positive.
We tried to live on. He stood by me, and I pushed him away. Stumbling through the health industry without a clue, I began a life between counts of CD4s and viral loads. Doctors said I was fine, but how can one account for a broken soul? I continued to work, go to the gym and do the things HIV-negative people do.
My liver started to hurt as soon as I started Norvir and Combivir. The doctor said there was no reason I should feel pain on the right side of my abdomen, so I fired him. My performance at work declined, and I started making mistakes. My boss fired me. I told more doctors at a new clinic that something was wrong.
I found a new job but lost that one also after being out sick too much and explaining that I was HIV-positive. After hearing over and over from clinic doctors that I was fine, only after my eyes turned yellow was I given a blood test revealing hepatitis A. My body cleared it with no additional medications. Yet, it was a horrible experience and revealed to anyone who looked that something was wrong with me.
The clinic said they gave me hepatitis shots, but my liver continued to hurt. I didn't know any better than to trust inexperienced doctors. Only looking at CD4s and HIV viral loads, one doc said it could be gallstones. A test revealed none.
No stranger to recreational drugs, along the way I discovered the most intense highs and the lowest lows and that reality escapes at warp speed with crystal meth. It remains a love/hate relationship. I got my last job after the interview went perfectly smoothly while I was flying high. My liver hurt worse and worse.
There is no way to know how long I had hepatitis B. HIV meds and drug use no doubt worsened the liver pain. The more my liver hurt, the more drugs I did. The more drugs I did, the more my liver hurt.
Finally, I found a diagnosis at a clinic who referred me for a liver biopsy performed by a doctor renowned as a liver expert. The biopsy revealed hepatitis B and Level II of liver failure, with Level IV being cirrhosis. A blood test was performed, and, allegedly because the viral load was so low, they decided not to treat it even though I still had pain. I continued to experience increasing nausea, no appetite, and fatigue.
After substandard lack of care at clinics, a friend finally took me to his private HIV doctor who thankfully took Medicaid. It was a long road to discover that not all doctors knew what they were talking about and that I need not settle for anything when it came to my health care regardless of income or insurance. Thank God I found a new doc who would listen and actually care for me. It actually bothered him that I had so much liver pain and he aggressively diagnosed and treated the condition. We've been health care partners since 2002 fighting HIV and hep B all the way.
He was of the opinion that the hepatitis B warranted treatment, especially considering the pain. Going out on a limb with an untested, unapproved treatment, the doctor advised me that he'd seen some of his patients actually clear hepatitis B with an immune activator called interleukin-2 (IL-2) or Proleukin. It's a simulated protein that is produced naturally by T cells when stimulated by infection. This drug has been approved by the Federal Drug Administration (FDA) to stimulate the immune systems of those suffering from cancer.
My side effects from IL-2 I have been severely intense, including flu, fever, muscle aches, nausea, headaches, skin irritation, severe fatigue, abdominal pain, mood changes, irritability, insomnia, confusion and depression. Also in our arsenal treating the hep B have been Hepsera and Famvir. Truvada has been found effective, and Sustiva completes my HIV/hep B cocktail.
Even though 90 percent of co-infected people have chronic hep B, after two IL-2 treatments, my hep B viral load amazingly went undetectable in November 2004. Just to play it safe I'm still doing the Famvir and Hepsera. But wouldn't it be super cool if I've been cured?
Mitchell A.G. Luna is a writer with a background in social work who lives and works in New York City.
This article was provided by Body Positive. It is a part of the publication Body Positive.