This Positive Life: Life After Being Cured of HIV
September 5, 2012
Olivia Ford: What led you to take the medication again?
Timothy Brown: My viral load had gone up. It had been undetectable for a while, and my CD4 counts climbed. I believe they got below 300 which, in the United States, means that you legally have AIDS.
Olivia Ford: A clinical AIDS diagnosis.
Olivia Ford: How was your health after you stopped the drug holiday and started taking the medication?
Timothy Brown: It basically got better again. Actually, I felt very good those two years that I didn't have to take the medication. I got tested quite often, and my doctor said I should take the medication again, so I did.
Oh, yeah -- this was before the drug holiday -- I was taking Norvir and it made me very ill, nauseous. I quit taking it, all of a sudden, on my own. And my doctor got very angry at me. Like, "Probably, you screwed up your whole regimen." Luckily, I didn't have any resistance from not taking it.
Things went on until 2006, and then I went to New York to go to a wedding of friends of mine. It was two men that got married -- not legally, because it wasn't yet legal in New York. But it was a nice Jewish wedding with a chuppah and a rabbi. It was nice. Unfortunately, I felt awful the whole time, very low energy. I thought that it was jetlag. Also, the person I was staying with, a friend of mine, was up all night. And I was sleeping right next to his computer, and I would hear click, click, click, click, and I couldn't sleep. So I thought it was that.
Then I went back to Berlin, and rode my bicycle to work, which I did practically every day when it was possible. I was slower than usual. I got to work and my boss got angry at me, and I said I just didn't feel well.
At lunchtime, I rode my bike halfway to a place that I wanted to eat at, and I had to stop halfway through. I got off my bike and called my partner, Michel, and said, "I'm not feeling well. I don't know what's wrong. I don't have any energy. I think I need to see a doctor."
He tried to make an appointment at my doctor, but they said, "It will be several days." So he called up his doctor, who was also an HIV specialist, and his doctor said, "Yeah, bring him in tomorrow."
I went there the next day. They took a blood test and determined that I had anemia, very low red blood cells, and that I needed to get a transfusion. They got a couple bags of red blood cells for me, and I got those. The levels of red blood cells would go up and then fall, pretty rapidly.
Olivia Ford: When did they discover what was going on?
Timothy Brown: It took about five days. And then he said, "I think I need to refer you to an oncologist."
I went to the oncologist, and he did the same thing. He gave me red blood cells. He said, "I don't think this is anything serious. My gut feeling tells me that this isn't anything real serious like leukemia, or lymphoma, or Hodgkin's disease." But he did a bone marrow biopsy, which is horribly painful. They drill into your back above your tailbone, and pull out small quantities of fluid. And it hurts like you can't believe.
He did that, and I went home. That was a Friday. I had an appointment for Monday. I went in there that Monday, and he said, "I guess I was wrong. My gut feeling was wrong. You have acute myeloid leukemia."
That was a huge shock. That was worse than knowing that I had HIV, even though when I found out I had HIV I thought that was a death sentence. Because I knew that leukemia had to be treated very quickly. They did a test of how much of my blood had been taken over by the leukemia. The leukemic cells had replaced most of my white blood cells. So I was in bad shape.
Anyway, he was like, "You need to go to the hospital." I asked him where he thought I should go, and where I could get the best treatment, and where they wouldn't throw out the stigma things on me.
Because my partner at that time -- he has hepatitis B -- had been in a city called Halle, it's south of Berlin. He had acute liver problems and got taken to the hospital, and heard things like, "Don't touch him. He's got AIDS!" Horrible things like that. I didn't want that.
He said, "OK, we'll call this one hospital" -- where he had worked at before, and that I should go there. It wasn't too far from my house. He called them up and got Dr. Gero Hütter on the phone, who ended up being my savior.
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