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"I was raised by a mother who thought that challenges are just learning experiences. As a result, I think, I took living with HIV as a challenge, and also decided to learn as much as I could." I'm very competitive. I was raised by a mother who thought that challenges are just learning experiences. As a result, I think, I took living with HIV as a challenge, and also decided to learn as much as I could. But you were counseling people, in a pretty hopeless moment, to be hopeful. I really think that woman really had a lot to do with my shift, with me deciding to take charge of my life. People think she's a spiritual guru, and sometimes people criticize her for many things. We would have a whole stadium full of people with HIV, listening to this woman. The Marianne Williamson support group was definitely the place where I met the coolest guys, with the most information. The only newsletter we would get by mail is John James' AIDS Treatment News. That was the only way that we knew what was going on. Yes, or how difficult it was to get information from the AIDS conferences, from researchers. We found out that AZT was actually killing us faster, in the high doses, of course, that were used back then, so that was a very depressing conference. So of course, those of us that did make it through '96, '97, were exposed to the new drugs. Meaning, if you don't ask for it, you won't get the test. My doctor should know what to test me for." Well, doctors are human beings, they are busy. So we were having a pretty free life when it came to sex in the gay community. But I was looking for an engineering job while the oil business was crashing in Houston. I really think, looking back, that's probably what made a difference between both of our survivals -- that and many other factors, of course, that I'll probably talk about through the interview. Do you think it helped that you were counseling others? It was all about shifting the mentality from being a victim to being empowered. She kept saying that you only got sick if you didn't love yourself. Many people are loving themselves and they are still dying. He's not HIV positive, but he's my -- I even tell him now, "I used to get your newsletter and I'd wait for it." I would also get Project Inform's newsletters by mail. That's when they told us that the CONCORD study had been finished, and the AZT data was out. What I didn't ask you was, when you were first diagnosed, did they give you a CD4 count? Many of my friends and my partners (I had two partners actually die) did not make it to '96. So I had been living with a viral load of over 5,000 for 21 years. So what was your CD4 count when you first got tested, whenever that was? A proactive patient does research and prints it out or e-mails it to their doctors and discuss it with their doctors. I found out: hey, this is a problem that 40 percent of us may have. "Oh, sure, let me test you." My results came up low. Remember only the squeaky wheel gets the grease on. Shannon Schrader: He's one of the best here in Houston -- probably one of the best in the South, I'm sure.
Can you tell our readers and listeners about your personal history with HIV? Was he living with HIV at least for the two years that you were together. It was not a piece of knowledge that really helped anybody back then. But in those years, was there a strong notion that that was unsafe sex? When I met him in '83, in '82-'83, HIV wasn't even part of the global discussion. I'm a chemical engineer per training, and had been working the oilfields in Venezuela. I decided, after crying for two days that either I would accept my early death, or do something about it. What happened with your relationship with your boyfriend? I found out a year later that I was actually in the placebo group ... Because we found out later that AZT, at high doses, was actually killing people faster than not. They were drugs that were not really helping us survive, but they had some minor effect. It was actually a food pantry, I forgot the name -- Project Angel Food, or something. A bunch of us, like, 40 of us, would come and sit on the floor. Of course, after '96, I have been to every single Retrovirus conference [also called the Conference on Retroviruses and Opportunistic Infections, this is the most important HIV research conference of the year]. That, for me, was the most wonderful experience, because it's like a school where you learn how to interact with researchers, and also learn how to interact with doctors and how to read research protocol, a study, and how to look at data. I think whoever survived till '96, '97 -- of course, made it through to the wave of HAART, to the introduction of protease inhibitors. Maybe I do have some genetic factors that also gave me some advantage. So I was really healthy when I found out and, in a way, as I said, my partner back then probably saved my life. You think you had been recently infected when you were diagnosed? I know the date because I was very symptomatic after that. I came here for a conference and then went back home. It's a very important to have normal levels in your blood. I'm not plugging you, but you do have a great Web site. He doesn't make my decisions, my health decisions; I do.
Among Nelson Vergel's top tips for surviving HIV/AIDS: Stay informed and connect with others. I was an immigrant, who was coming to the United States and trying to make it. It would have taken me probably ten years to do so. I just got tested because I knew that we had had unsafe sex, and chances were that I was positive. Basically, a week or two weeks later, after getting my test, I started my training as an activist, without knowing I was going to become one. We were taking it four times a day, 1,000 mg a day. My parents and my family were all back in South America. Venezuela is not a very open-minded country when it comes to homosexuality. That was also stressful for me, hiding my identity as a gay man, and also as an HIV-positive person. I was working during the day and counseling people at night, in a free clinic here in Houston, the Montrose Clinic. I would see easily 20 people that were HIV positive, sometimes in one night. It would help, because I was already positive myself and dealing with it. And yeah this is a scary thing, but we'll find a way to work through this." Of course back then we only had -- in the late '80s, early '90s -- we only had AZT, and then we had all the other nucleoside analogs, like dd C [Hivid] and dd I [Videx], and d4T [Zerit]. I think what really helped me is to get out of my head. Marianne Williamson opened a group in West Hollywood. But I applied for the community advisory board at the ACTG, the AIDS Clinical Trials Group. But I think other factors were that I really prevented weight loss, unintentional weight loss and wasting. As did exercise, in combination with nutrition and testosterone, and all that. It was that, HAART, maybe the fact that I have faith -- not faith like God faith, but I have faith that I could take care of my health and control my outcome. I thought it was a bad flu that I had caught in the United States. It can also prevent depression, fatigue, sexual dysfunction. I find out about things, and then I talk to my physician about it. A proactive, empowered patient is a patient that reads, that gets newsletters, like from The Body. You always need to make sure that your doctor is your partner in health, not somebody that tells you what to do. I know everyone has difficulty finding someone who they can partner with. He's got really bad manners." Or, "He treats me like I'm inferior." Or, "I can sense that he's got homophobia, or HIV phobia." Blah, blah, blah.
But he tested behind my back and told me he was positive. So I decided I needed to get tested myself, and I did. Originally from Venezuela, he has been living in Houston, Texas, almost as long as he's known he's HIV positive. Companies were testing people back then without your consent, and there were no treatments available, no hope. No treatment: no AZT [Retrovir], no HIV drugs, a lot of fear and a lot of discrimination. I don't think I would have tested or gotten a test done if it weren't for him. Because it would have taken me a long time to make the decision on my own. Yes, it was an ACTG study -- but back then I don't even think it was called ACTG -- but it was studying AZT, the first drug, at high doses. There's the machismo, and the cultural problems with growing up Catholic and Latino in South America. They knew, but it was something that nobody discussed. Of course, they found out a lot a few years later that I'm also HIV-positive. I was also in the closet, in a double closet, not only about being gay, but also about being HIV positive. Obviously, I didn't really know who, besides maybe the people who worked in Human Resources. But back then, I remember clearly: I would say 50 percent of the people I would see were positive -- I would probably see 30 people at night; there was a lot of people back then, and a lot of anxiety. I was terrified to die young, and die in this country by myself, where I had no family. They told me, "Hey, Nelson, you know, hormones and nutrition and supplements. We're looking good, and we're not wasting." So I finished up with my research and ended up writing a book about it. She's now a very well-known author and motivational speaker. So, here I am, 48 years old and getting older with HIV. Does anyone have any idea how you survived when so many other people died? I think we are finding out more and more that it's a combination of factors. I think we're getting closer to starting to find out what we call polymorphisms -- genetic factors that make somebody probably have a longer survival, better survival. I am also taking a testosterone replacement, every two weeks. Testosterone can prevent HIV wasting or related weight loss. You just ask, or start talking to them, and people start saying, "Well, you know, I went to this doctor.
Even to get tested back then was a horrible thing, because there were no treatments and no options and there was a lot of fear. After all these years, Nelson remains dedicated to helping people with HIV. He also has a full schedule of talks around the country. So I was not looking forward to getting tested because ... For instance, there was discrimination in the job place. With the ACTG, the AIDS Clinical Trials Group network? That was one of the reasons I left the country because back then it was difficult being gay in Venezuela. I also eventually found a job at Shell Oil, working as an engineer for them. So that was always a question in my mind -- that somebody knew in the company. I was counseling people that got their HIV-negative results, or HIV-positive results. Meaning, when he found out he was HIV positive, he didn't tell anybody, not even his best friends. They are all dead now, but I learned a lot from these guys through support groups. "Marianne Williamson would sit on the floor with us and she kept repeating to us that we were not victims, that we could take charge, that even if we died young, we need to make the best out of our lives." The best one was Marianne Williamson's support group. They told me to go home and pray and eat well, and take care of my business. But I remember, deep inside I had this feeling that the more information I had, the more chance I would have to make it through. I only take medications that my physician tells me to take. There's some good research that is starting to show that people, especially -- I had shingles in the past -- that had many flare-ups of herpes-related infections may benefit from continuous dosing of Famvir. I've been doing it for 14 years because my body does not produce normal levels of testosterone. When you go to a support group, if there are five people there, people talk.
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