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HIV/AIDS Resource Center for Women
Michelle Lopez Alora Gale Precious Jackson Nina Martinez Gracia Violeta Ross Quiroga Loreen Willenberg  
Michelle Alora Precious Nina Gracia Loreen  
Loreen Willenberg

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"Knowledge is power. Now we have the Internet. ... There's just so much great and accurate information that we can access, compared to what there was 15 years ago."
What was your first CD4 count?

My first CD4 count measured 1,856. [Editor's note: Loreen has an abnormally high CD4 count. The average CD4 count for a healthy, HIV-negative person is between 800 and 1,200.]

Did your CD4 count stay around that level with each blood draw?

Yes, yes. The lowest I ever measured was 1,100. I had, I think it was, a kidney stone, so my immune system was under stress. Now I think I have a count in the 2,000 range after almost 15 years, so who knows what's going on?

What advice would you give to somebody who just found out that they were infected with HIV?

I would tell someone who just found out that he or she was infected with HIV: Don't forget to breathe. Knowledge is power. Now we have the Internet. There's just an amazing volume of information out there, thanks to Web sites like your own. There's just so much great and accurate information that we can access, compared to [what there was] 15 years ago.

I'm a book reader, so I grabbed books off the shelves like crazy back in 1992. Also, I would say, maybe if their health is up to it and their psyche is up to it, not to be afraid to find out ways that they can become involved. Not necessarily always on the political level, because that can become overwhelming in itself, but seek out support. Use a hotline if you don't want to have your face out there. There's all kinds of things available.

You talked about the good times when you disclosed to your family and your friends. Were there times when you disclosed when it wasn't so good, when you were dating or other times?

Yes. I can remember a couple of times when I disclosed to a person I was newly dating. It didn't go too well. [Laughs.]

What happened?

They left. But it's all relative. You have to place it in the context of the community we were living in. They were mountain men. You know what I mean? That was OK. I would actually disclose, Bonnie, early on in the relationship, before it even reached the sexual level.

At what point? The second date? The third date?

I'm pretty up front. As soon as I began to feel there was a physical attraction, I would disclose.

How soon is that? It's different for everybody, but you would already have gone on one or two dates?

I would say so. I would say so.

Why didn't you think it was a good thing, once a person asked you on a date, to say, "Oh, I'd love to go on a date, but I just want to tell you that I'm HIV positive." Why wouldn't you do that?

I was very careful. I have always been very careful with myself. After I realized I had been infected I became very selective about the people I would date. So [I thought it was OK going on a date without disclosing my HIV status] a couple of times, fine. Go out and have dinner, go out and see a movie, no problem. But it was at that point I felt that perhaps it would develop into a sexual relationship that I would put the news out there. I wouldn't wait.

Did the men who rejected you feel that you shouldn't have gone on the first date?

No, I never got that from them. But they certainly backed off after they found out I was positive. But that didn't happen very often --

Loreen in 1992, at the age of 38. She was celebrating Mother's Day in Lake Tahoe, Calif., with her mom and stepfather. Loreen says she was seroconverting at the time.

Loreen in 1992, at the age of 38. She was celebrating Mother's Day in Lake Tahoe, Calif., with her mom and stepfather. Loreen says she was seroconverting at the time.

Oh, good.

Because I didn't date a lot.

Not so good.

That's not so good. [Laughing.] No, I actually wound up staying celibate for about seven years.

So tell me about the happy ending?

The happy ending that I'm living now?

Yes. I hear there is a love interest in this story.

You know, it's a rather remarkable story. I am now living with my best friend of 40 years. We'd been high school sweethearts. We've always stayed in touch. In fact -- interesting little side note -- back in 1995, he had come to visit me from Southern California and actually proposed marriage to me in 1995. But I was still not sure of the progression or the non-progression of this virus, and I turned him down.

You mean you felt that your life was in danger and you couldn't commit?

Yes, and also from all these stories from these friends I had who had ill health and side effects from the medications, I remember having this conversation with my man and telling him, "I just don't think I can go into a relationship that might not have a future."

This guy, so tenacious, we've shared many years of relationship visits here and visits there, lots of phone conversations. Finally, he actually caught me coming back from an NIH [National Institutes of Health] trip last April. And he had invited me to go to our high school picnic. I couldn't go because I knew that I had a trip to Canada planned.

The trip I had planned had nothing to do with the trip to the International AIDS Conference. [But] I did wind up going there as you know. That invitation happened a week before my vacation to Montreal, but Herb insisted that I come and visit him for Thanksgiving. When I did, sparks flew. We decided to blend our lives. I relocated to Southern California three months ago, and I've got to tell you that it makes all those years of celibacy worthwhile! [Laughs.] To say the least! He's negative. He's a dad. He has a 21-year-old son. He's been divorced for about 12 years. He's very interested in all of this. He wants to know about it. He's particularly interested in the research studies I fly to participate in. In fact, he'll be going with me to Dr. Bruce Walker's study in May.

I don't think our audience knows how active you are. So tell me when you started volunteering for scientists to investigate why you have never needed HIV treatment and why you have a CD4 count that's so high and why you have managed to maintain an undetectable viral load. When did you start allowing people to study you?

Well, the physician I spoke to you about in Sacramento [got me involved], and he remains my physician to this day.

Let me make an interjection here: I would recommend that if someone finds a physician they are able to have a great conversation with and have a very good dialogue with, to hang on to them. Continuity of care is very important.

My doctor and I had searched for years. Knowing that we had eight years of labs recorded, we started searching for anyone, any medical institution or research group that was studying [HIV-positive people with] such high CD4 counts and undetectable viral loads. We were very disillusioned because we only found one study in England, at Oxford. This was back in 1997, so eight, nine years ago, that time frame.

Eventually, I received my POZ magazine, and that was October of 2004. POZ had published Dr. Walker's appeal, looking for individuals of exactly that history: no medications ever, high CD4s, the undetectable viral load or low viral load. I think at that time they were saying below 5,000. And you know, Bonnie, when I opened up that magazine and read that I broke down in tears because I knew that there were some individuals that I could call.

Indeed, I did, I called them the very next day. We shipped them ten vials of my blood. Within three, four months they came back to me and said, "You know, you're a definite long-term nonprogressor." I believe that's probably the first time that I even heard that term, in 2005, early spring. After that they flew me back to Harvard.

So they paid for your airfare?

Yes they did. They did. They also paid for a hotel for two nights. Meeting Dr. Walker was one of the most amazing events of my life.

Why?

Why? Because I knew that someone was interested. I knew that there was a medical professional out there who was looking at folks like myself. Also his staff was so amazing. They started linking me to the articles that were being published in the medical journals. They also did me a favor and introduced me to two other individuals who were participants in the study.

Were they there at the time?

No, they weren't there in person. But [the staff] knew that they had requests from these individuals who wanted to connect with other participants. The first woman I spoke with is in your town. She's in Brooklyn. And another gentleman is over in Australia. I haven't met the woman yet, but last year I met the gentleman from Australia in person. He's the one who connected me to the long-term nonprogression study at the National Institutes of Health. When I flew back there in June of last year, Paul and I finally met. It was like meeting a kindred spirit. For us it was important because we had lived for years not understanding what was so different about us. It was as if we straddled the whole issue. Indeed, I wrote an article called "Partially Positive" about that very feeling last May. I've written quite a few articles about this. It's so unique and it's so surreal. To connect with other individuals who are in the same boat has been a magnificent experience for me.

On World AIDS Day, Dec. 1, 2006, in front of a display on women and HIV at the Placerville, Calif. Public Health Department. Loreen and a colleague created the display to offer much-needed HIV education to both Spanish- and English-speaking women in the area.

On World AIDS Day, Dec. 1, 2006, in front of a display on women and HIV at the Placerville, Calif. Public Health Department. Loreen and a colleague created the display to offer much-needed HIV education to both Spanish- and English-speaking women in the area.

I know Bruce Walker is calling people with your counts "elite controllers." How many people are in that group?

Three hundred fifty, I think, is the number. After you and I left each other's company at the International AIDS Conference, after the press conference where Dr. Walker announced his search for more of us, at that point in time they only knew of 150 of us. I'm happy to tell you that as of today there are 350 that they have located, because of the cooperation that Dr. Walker was publicizing at the International AIDS Conference.

So, 350 is the number. I know that they are still aiming to locate 1,000. I myself am also trying to assist them in my own personal ways, my own personal network, to assist them with that goal. I have to let you know that as of today I have had the pleasure to talk to almost twenty elite and viremic controllers on the phone. It's phenomenal.

So the NIH study is a different study?

It's a different study. What I have learned recently is that Dr. Walker's group is on the trail for a therapeutic vaccine, as is the National Institutes of Health. However, I'm also a participant in a study at U.C. [University of California,] Davis. One of them is called mucosal immune response. They are studying the lower part of the anatomy, so I have donated tissues from my lower intestines to that study.

Then there's another study for the upper intestinal track, called the Gut study. In the last year or so there's been a lot of research done about how the virus has a tendency to concentrate in the intestines or in the gut. So their work in simian monkeys is actually producing some very interesting results. Soon I'll fly back up to Sacramento to donate part of my upper intestines for that. Dr. Steven Deeks is another individual I've had the pleasure of meeting. He's in San Francisco. What his trail has to do with is that he has a theory, Bonnie, that there are a few of us elite controllers that have eradicated the virus from our bodies completely. He's trying to locate copies of the virus in our bodies. I told him when I met him, I said, "This is a very interesting thing for you to say." He's just now getting his feet on the ground with this. AmfAR [the American Foundation for AIDS Research] has been gracious in producing some funding for this study. It's called the SCOPE [Study of the Consequences of Protease-inhibitor Era] Study. So he's on a different trail. [Editor's note: In spite of its title, SCOPE is not a protease inhibitor study. SCOPE researchers are compiling samples from HIV-positive people to study a number of HIV-related phenomena, including long term non-progression.]

Nonprogressors like you continue to test positive for HIV, correct?

Yes.

But Dr. Deeks believes that these people who are testing positive have actually eradicated the virus?

Right.

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See Also
More Personal Accounts of Women With HIV/AIDS

Reader Comments:

Comment by: Manyepo (Mutare,Zimbabwe) Fri., Jun. 22, 2012 at 3:26 am EDT
she was really brave,I think if people start to take aids as any general illness,then all the fear of disclosing one's status due to stigmatization and discrimination can be overcome.Lets fight together as humans in one accord against this our common enermy
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Comment by: bint alshamsa (Baton Rouge, LA) Thu., Jan. 12, 2012 at 1:09 am EST
This interview fills me with hope. I'm not HIV+, but I have an (auto)immune disease that makes life difficult to deal with in several of the same ways. Thank you so much for sharing this with those who didn't get to hear the podcast.
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Comment by: sky (richmond va) Wed., Feb. 23, 2011 at 4:37 am EST
hello yes i have HiV and my life have not been right since i have had this. do not have a please to go,no money.do not do drugs the man that gave me this is now DEAD iwanted to take him out,but thats not my call i can not give life,and it would not help me at all. i;m sad most of the time. just want my own place. thats all i need. please help me do not want to be in a shelter. i have no one.
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Comment by: Rosanne O. (Branham) (Riverside, CA) Sun., Oct. 3, 2010 at 6:59 am EDT
Loreen, do you remember be from our wonderful days in Los Angeles as little girls! We we went to Lou Costello Elementary! What a brave and wonderfully beautiful women you are. Your life has such meaning and you know your purpose. I feel honored to know you back in the day and I recall what a great artist your were - and you still have that fantastic mane that I still remember.
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Comment by: teresa (chicago) Mon., Sep. 13, 2010 at 1:31 pm EDT
Loreen, What a maverick of the cause. Your generosity and giving nature blesses us all. I am 46 and have been positive since 1997. I suffer not 1 but 2 diseases. No one knows if they are related or not. My ID dr. and my neuro dr. think they are unrelated. My muscles are getting bigger and bigger. My calf muscles are getting so big they are turning my feet sideways. My shoulders are getting so big they are pulling at the disc in my back. My tongue muscle is even getting bigger! I have seen 5 different specialists. Some insist it is part of the hiv, some think it has to be connected to the meds. 2 neuro dr.s think it is myotonia or muscular distrophy. I have applied to NIH but have not heard anything back yet. What you are doing for the research of a cure is a beautiful wonderful gift of hope. Thank you.
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Comment by: Bob (Detroit, MI) Fri., Apr. 23, 2010 at 11:45 pm EDT
Loreen,

Simply stated you are an inspiration!!! I read your story for the first time today and quite frankly speaking I'd honestly have to state it was the most inspirational, amazingly positive and beautiful piece I have come across year to date. Thanks for sharing such a beautiful inspiring account of your experiences and life. Please continue to update one and all on your progress and activities.

Thx

Bob
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Comment by: Tiffany (Tampa fl) Mon., Mar. 29, 2010 at 1:23 am EDT
I think it shouldnt be a secret who is infected because they dont tell you they feel if i have it spread it die like me its sick they dont tell you it should be the law
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Comment by: Evie (Savannah, GA) Thu., Jan. 21, 2010 at 8:23 pm EST
Loreen,

Your true spirit of positive energy will keep you around forever.
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Comment by: Laura (Utah) Tue., Dec. 29, 2009 at 12:29 pm EST
Loreen you are a doll and you can swim in my pool anytime! :D
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Comment by: Amber (Toronto Canada) Sat., Dec. 19, 2009 at 7:25 am EST
Loreen I googled you after our conversations via email this week re World AIDS Day.
You are one amazing woman! I am proud to call you Sister!
We were infected and diagnosed around the same time.
Stay Strong! Stay Well
Love,
Amber
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Comment by: Patrick (London, UK) Thu., Dec. 17, 2009 at 1:40 pm EST
Loreen, I am so in awe of your setting up the Zephyr foundation in order to try and contribute more towards the search for a cure and a vaccine. That is such an honourable thing to do. I don't believe in the supernatural and the paranormal so I will not say "Bless you!" but I will say, YOU ARE A FINE HUMAN-BEING, LOREEN. P.S. I'm 55, about the same age as you, +, but unfortunately not an LTNP.

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Comment by: ROSE (CAMEROON) Tue., May. 26, 2009 at 6:36 am EDT
QUITE AN INTERESTING PERSON . I WISH TO CONTACT HER FOR MUCH ENCOURAGEMENTS AS FAR AS MY OWN SITUATION IS CONCERN.GOD BLESS U AN I WISH U LONG LIFE AND PROSPERITY

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Comment by: John (Tokyo, Japan) Sat., Apr. 18, 2009 at 10:48 am EDT
Loreen, what a beautiful person, so giving. God bless you always.
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