Print this page    •   Back to Web version of article

First Person: Loreen Willenberg

By Bonnie Goldman

Listen to Audio (54 min.)

Download Audio

This podcast is a part of the series This Positive Life. To subscribe to this series, click here.

Loreen Willenberg

About Loreen
Age: 54
Home: Sacramento, Calif.
Diagnosed: 1992
Click here and scroll down for more updates from Loreen!

Loreen Willenberg, a resident of California, has survived HIV infection since 1992. She recently relocated from her small California town to the state's capital city, Sacramento. Loreen is part of a tiny group of people with HIV that scientists call "elite controllers," also called "long-term non-progressors." What is an elite controller? It's someone with HIV who has never had a detectable viral load, although they have never taken HIV meds. She also has an astonishingly high CD4 count and has never experienced any adverse health effects from HIV. Loreen considers it her responsibility as an elite controller to help other people with HIV, which is why she's currently participating in three clinical studies in which researchers are trying to understand how people like Loreen actually control the virus. She has also created a new organization for people like her called the Zephyr Foundation, which brings elite controllers all over the world together and helps them participate in clinical research studies.

Although Loreen was infected in 1992, she didn't disclose her HIV status publicly until the spring of 2006, in an interview with her local newspaper. The Body had the privilege to briefly interview Loreen at the International AIDS Conference in Toronto, Canada in the summer of 2006, when she had only recently come out as positive and was enthusiastically embracing her role as a "newly born activist." She's returned to talk with us about her new life as an HIV advocate.

Updated June 2008

To read Loreen's blog, click here.

Before we begin talking about your life, I was wondering if you have ever taken any vitamins or done anything that may account for your amazing health status?

Absolutely nothing. No supplements. I've always eaten very well. I was raised by a northern Minnesota woman. As I mentioned to the world press at the International AIDS Conference, I really can't remember going on any particular health kick or any of that.

So you don't do any juicing? You don't even take a multiple vitamin?

No. Nothing.

"The nurse ... looked at me and said, 'You know, this means a death sentence. I would recommend you collect and complete the unfinished business in your life.' I told her, 'That's your personal opinion. It's not necessarily the one that I have to subscribe to.'"

Do you do meditation or yoga?

Actually, I center myself with gardening. This is how I center myself. I love to work with the earth. That's very therapeutic for me, and I've done that both personally and professionally all my life, worked with the plants, worked with mother earth.

Now Loreen, tell me, how did you find out that you were HIV positive?

Actually, Bonnie, I had a dream that I was HIV positive. I went into the public health department just to validate it, and, indeed, it did come back indeterminate. I was still in the process of seroconversion when that dream came.

Why did you feel you were at risk?

I had actually been engaged to an individual who apparently had a history of risky behavior. Even though I think that consciously I wasn't admitting that acknowledgment, my psyche did. My subconscious picked it up, and indeed I contracted it from my fiancé.

It took the public health department a particularly long time to confirm [that I was HIV positive] because of the recent infection. I tested indeterminate. I don't know what percentage of newly diagnosed people that happens with, but it took them another three or four weeks. They had to send the sample to a state lab, instead of doing it locally. So I had an extended wait period. It was probably a good eight weeks. I already knew the answer, but --

Why did you feel you already knew the answer? Weren't you hopeful that an indeterminate result could go either way?

Yes. But I think that my dream was so definitive that I understood that, yes, I was positive. It was just an intuition.

What did you do during those eight weeks? Didn't you go crazy?

It was pretty tough I have to admit. I don't know if you recall that when you and I met last summer I let you know that I had been residing in a rather rural community in the northern California foothills. There wasn't a whole lot of information. As a matter of fact, just the other day I was looking at the form that the public health department provided to me. It was typewritten and it was very vague. All I remember is this: The nurse that was sitting at the desk across from me, when they did come up with a positive ELISA and a positive Western blot, looked at me and said, "You know, this means a death sentence. I would recommend you collect and complete the unfinished business in your life." That's what they gave me in 1992.

Well, 1992 was a different time.

Yep, sure was.

At that time, although it might have been true, it's not an appropriate thing to say to anybody.

I don't know why -- if it was just my innate curiosity to leap forward, but I remember telling her, "That's your personal opinion. It's not necessarily the one that I have to subscribe to."

"I realized that I didn't want to hurt the person [who had given me HIV]. I had a very strong sense of compassion because he was obviously ill. ... I had a sense of peace with it."

That's when I started calling Project Inform in San Francisco, their hotline [The Project Inform treatment hotline offers HIV treatment information at no cost. In the United States, call 1-800-822-7422. Outside the U.S., call 1-415-558-9051.]

So you had a strong enough sense of self to disagree with a medical authority. A lot of people would just say, "Oh, OK," and get their things in order. Why didn't you do that? What made you strong enough to talk back to the nurse and say, "You're wrong!" What gave you that strength?

Twelve years before I had been diagnosed with cancer, cervical cancer. Similar to the news from the public health nurse with the HIV diagnosis, that physician told me that it was a level 5 pap smear and that I could expect not to be around for very long. I immediately then asked for a second opinion -- I had a couple of friends who were physicians. And again I jumped straight into the self-education process, reading all the books I could, talking to people. Indeed, I'm still here. I have a distinct memory of the day that I was diagnosed HIV positive, that it kicked me back to the day in 1980. I just refused to subscribe to [negative thinking]. I'm very strong willed.

Do you remember those eight weeks before you were diagnosed? Do you remember what season it was? Do you remember what you were doing?

Yes, I do. I'm a landscape contractor, and I was quite busy at that time. It was springtime, late spring. I was very busy with my crew and clients, so I had a bunch of distractions.

But let me tell you an interesting side note to this story. I did indeed get a hold of my ex-fiancé. I wanted to discuss with him, this issue. He denied it. He actually denied that he had transmitted the virus to me. Interestingly enough, the same nurse that gave me the diagnosis told me that they had proof that he had infected another woman in a neighboring community. They actually gave me that woman's phone number, and I distinctly remember a very interesting phone conversation with her.

Loreen playing the board game Mousetrap at her best friend's house outside Los Angeles. The photo was taken in 1968, when Loreen was 14 years old. Forty years later, her then-best friend became her partner. They live together in southern California.

Loreen playing the board game Mousetrap at her best friend's house outside Los Angeles. The photo was taken in 1968, when Loreen was 14 years old. Forty years later, her then-best friend became her partner. They live together in southern California.

Interesting in what way?

Interesting because I think that she and I connected. We realized that perhaps we hadn't been as discerning as we could have been with our choice of a mate. It seemed to me that she was as strong an individual as I was because she was doing quite well. She had been infected about six months prior to me. I've been sorry that I haven't stayed in touch with the individual. Especially, now that 15 years have passed and the things that have happened in my life with the medical research and all of that. I'd really love to look her up again and have a conversation. But I feel like we supported each other. There was only one phone conversation, but I definitely felt that just connecting with one woman who was HIV positive was very beneficial to both of us.

Try to break down, if you can, what happened. You told me previously that you were not engaged at the time that you were diagnosed. You already had broken up with the man.

Yes.

So he had been with another woman during your relationship with him?

Previous to our relationship.

Oh, previous to your relationship. You disclosed to the nurse who your partner had been, I guess. Did she ask?

Yes.

When you disclosed she said, "Oh. I already have this information about another person."

Yes.

Wow. That is illegal, I think, even in rural California.

Yes, she could have lost her job.

I guess this is small-town U.S.A.

That's correct.

So your town was so small that your nurse knew someone else that had been infected by your former fiancé, and your fiancé denied the whole thing. Do you know whatever happened to him?

Interestingly enough, Bonnie, I did run into him at a horse show in another community. This was five years after the fact. He was obviously in physical distress. He had gained an awful lot of weight, but his face was showing the wasting syndrome.

I remember distinctly the shock I felt at seeing him. I was with some really great friends of mine. We're basically a bunch of artisans, and all of them expected me to leap off the bleacher and attack him [laughs], but actually I had a sense of calm.

It was a very interesting experience. I remember saying to one of my friends, "Come take a walk with me. I need to get up and out of the crowd and just kind of walk off this energy," because there was a little bit of anger.

But then I realized that I didn't want to hurt the person. I had a very interesting and strong sense of compassion because he was obviously ill. I walked a couple of sections away and there was one point where the gentleman and I actually crossed paths again and we just stared at each other. I actually never had a conversation with him again. I never did.

I had a sense of peace with it because I had a decision to make: Was I going to be full of anger and negativity? Or was I just going to accept my part in contracting the disease and just let it go? Indeed that's what I did, and I'm happy about that. I'm a very positive person to begin with, and it just didn't seem natural for me to cause a scene, number one. And number two, because I was witnessing that he was obviously not well, I let it go. I've never regretted that decision.

"I have the benefit of a supportive and loving family. I know that there are so many women -- there are so many people who do not. So immediately I was embraced with love. I've been very blessed by that."

How long had you been together?

We had been together about eight months. We went shopping for rings, the whole thing. I can't remember the specific circumstances about why we broke up, but I remember thinking it was a very positive thing.

Was he around your age?

Yes, he was.

Who did you tell when you first found out that you were HIV positive?

One of my best girlfriends.

What was her reaction?

She said, "That's OK, you can still swim in my pool."

[Laughs.] I guess that's important in California.

Yes. [Laughing.] I remember thinking, "Uh, oh. This is going to be an interesting thing, dealing with different folks' reactions." I immediately told my family. I have three sisters. My mom was still surviving. I immediately talked to them. They just embraced me.

I have a wonderful family. I never once felt any stigma from them. They were concerned about my acquiring a good doctor. All of them jumped in to help educate me. As a matter of fact, my youngest sister made me a charter subscriber to POZ magazine. She immediately bought me a subscription to that magazine. I think my first issue was, I don't know, late 1994. I can't remember when they started.

I have the benefit of a supportive and loving family. I know that there are so many women -- there are so many people out there -- who do not. So immediately I was embraced with love. I've been very blessed by that.

So they had no fears about kissing you, about sharing cups with you? They were very knowledgeable about HIV transmission?

Yes.

Wow! That was back in 1992. If there is ignorance now, there was even a little bit more then.

Right.

Loreen in Minneapolis in 1974, at the age of 20. That year, she helped create and run the city's first community-supported FM radio station.

Loreen in Minneapolis in 1974, at the age of 20. That year, she helped create and run the city's first community-supported FM radio station.

So how did they come to be so knowledgeable?

That's an interesting question. My sisters are moms, and I think that they have always shown so much concern about their kids. We had so many conversations back and forth.

The more I learned through Project Inform -- who I will always be indebted to -- whoever was working that hotline, whenever I'd call, they were just fabulous for me. They are also, Bonnie, responsible for connecting me with my internist in the Sacramento area. They got me a physician, connected me with a physician who came from Stanford and had actually worked with the affected community in the San Francisco community for many years. I would say I was under his care within two months of my diagnosis.

You called the hotline and asked for a referral?

Yes, I did. I'll tell you why I was feeling unease. It was because I was in a very small town. I had heard stories about the lack of educated physicians in the neighborhood. I also had lots of friends who were gay, and they weren't happy with the services that were available at that time in the county.

I just took my health care completely down the hill, so to speak. I was living in the foothills and Sacramento then was about a half-an-hour away, so my physician was located down there. But I was also a business person and I was concerned that if my status got out, that it would affect my livelihood. I really lived that way in that same community, until last spring (2006), when I decided to do a full public disclosure in the local newspaper.

So until last spring you were pretty quiet about your status?

Yes, I was.

You would just disclose if you were dating or with friends.

Yes.

How did it feel all those years not to disclose? How did it feel not to share your status? Did you hear negative things about people with HIV?

I did. The other thing I did, Bonnie, was I became very active in the Ryan White consortia, back in 1995, even though I wasn't disclosing publicly. You have to remember that people were taking AZT [Retrovir, AZT] way back then. I had a couple of friends who were reacting quite badly to that. I lost one. He died from AIDS. Then I had another friend who had a wonderful doctor who took him off of it, and he is alive to this day.

But, I got involved politically, and I think that was when my true education began. I was paying more attention to the funds that were being streamlined into the community, which really wasn't quite much then. Yes, I did hear a lot of negative stories about people with HIV. I did an interesting walk.

"You know, with the assistance of my physician, to be truthful, it probably took about six months for me to get used to having HIV."

How did you get involved? How does someone do that? Did you just make a phone call and say, "Hi. I'm HIV positive, and I want to help"?

You know, I don't quite remember. There was a gay gentleman who was the head of our local AIDS task force in that town. He and I became friends. I can't distinctly remember how that happened. It might even have been through Project Inform, to tell you the truth. They gave me his phone number because he was in my area. He was very outspoken, very plugged in and took me under his wing. I'll also always be grateful to him. [Laughs.]

My life and this whole issue has been a very interesting trail. I fell in with the right people. There was one person that led me to another. There was this synchronicity involved. It's almost like I was supposed to be involved and be involved with the community, the affected community.

Let's go back to the diagnosis. How long did it take you to process it?

You mean mentally?

Yes, mentally. How long did it take you to not be upset about it, to say to yourself, "This is my life and I will go on?"

I think that with the assistance of my physician, the support of my family, educating myself, getting out there and trying to be politically active, I really can't say to you that I was ever emotionally devastated by my diagnosis.

You know with the assistance of my physician, to be truthful, it probably took about six months [for me to get used to having HIV]. By that time we had a couple of lab tests drawn. I was already exhibiting higher-than-human-normal CD4 counts. I remember having a conversation with him about the medications. Based on his experience in the Bay Area, he was telling me, "You are a long way away from that, Loreen. Let's just take the labs. Instead of every three months, let's do them every six months." Within two years he said, "You know, there's just no change with you, so let's just go to once a year." That started in 1995. Then they released the PCR RNA, what we call the viral load test now, and I always tested undetectable.

"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.

"I don't have to participate in HIV trials, but you know what? It's necessary. It's a personal purpose. If there's any way I can help -- if there's any way I can help -- I'm all about that."

What drives you to spend so much time doing this? I mean, you don't have to participate in all these studies.

I don't have to, but you know what? It's necessary. It's a personal purpose. If there's any way I can help, if there's any way I can help, I'm all about that. It's not a problem.

So you've never had any side effects from HIV.

No.

No illnesses related to HIV in all these years.

No, and I don't get colds and I don't get the flu. You know, my mom, she always told me, "If you were carrying an infection, you always needed to have it for a super, super long time before you showed any evidence, any symptoms."

You have an abnormally strong immune system it seems.

Yes, from what I understand from Dr. Stephen Migueles at the National Institutes of Health, if you want to talk about the science, the CD4s would be the general fighters, those are the fighting cells, and they get support from the CD8 cells, which are basically the soldiers. What they are seeing is that when my fighter cells are exposed to the HIV, I multiply CD8s. I multiply a huge army of soldiers like they never seen before. The NIH is focused on why I proliferate fighter cells. They expressed to me in June of last year that they've never seen a person multiply cells so quickly, so they know that's a unique thing.

Then of course, they're interested in my genes. I think it was Dr. Walker who originally discovered that I do carry the European descent gene. I don't know if you're familiar with the Spain cohort. Originally, I think ten years ago, they came up with this. They wanted to look at the survivors of the black plague. I'm a definitive carrier of the HLA-B57 gene. That is what that is called. And for all practical purposes, with their collaboration with the Human Genome Project, I think that genetics is the new groundbreaking frontier of research [on HIV-positive nonprogressors].

When I go back to Boston in May I'm going to have quite a list of questions for Dr. Walker, and I'm going to get an update of what the last year-and-a-half on his end has produced where I'm concerned. But it's still a mystery. I'm happy to say they're finding more of us. I think it's going to validate the work they're doing.

How often do you see these people, Bruce Walker, Steven Deeks or Stephen Migueles at the NIH? Are you visiting each place once a year?

Once a year for Boston. U.C. Davis wants to see me for this new study four times in one year. The NIH wanted to get me back when I was busy falling in love, so it turns out I will end up seeing them once a year. Even though it sounds like a lot, there's never any pressure. It's whenever it works with my schedule. They're lovely. They treat you so well when you're there. They're very forthcoming with their information, so I really appreciate that.

"After I disclosed ... people felt I was accessible. I had bank tellers asking me, 'Do condoms work? When should I tell my boyfriend that I want us to get tested?'"

Do both of them pay for your travel there?

Well, you know, we have to put out some money. Some institutions are a little better funded than others. The NIH is a little bit more stingy in terms of their per diem. I did learn last year that you have to put out some of your money before you can get reimbursed. There are things that I'm working on to perhaps create an organization that will cash advance interested participants, so that they're not having to put their money out for the taxis or the additional night at the hotel. I keep hearing that lots of the money is invested into the research, and they can't really afford to fly a lot of people in.

But I have to tell you that if it's true that there's more long-term nonprogressors out there, we need to scare up some more funding streams that will support these participants who live farther away and want to participate.

I think there's a barrier present and I think it's the finances, so some colleagues of mine are talking about how to fix that. Whether it would be an organization devoted to long-term nonprogressors, or elite controllers as they're called now, I don't know.

I'm kind of in a jumble with my relocation, but it would be my dream to create some kind of a support network [for people] that want to participate, but can't get funded out of the institution. I don't know. Maybe The Body.com can help me figure that out! [Laughs.]

Loreen with Dr. Bruce Walker at the XVI International AIDS Conference in Toronto, Canada, August 2006. Loreen is participating in Dr. Walker's study on 'elite HIV controllers.'

Loreen with Dr. Bruce Walker at the XVI International AIDS Conference in Toronto, Canada, August 2006. Loreen is participating in Dr. Walker's study on "elite HIV controllers."

Maybe. We're actually running out of time. Before we close I wanted to ask you about your coming out. You lived sort of anonymously for years. You only started to speak publicly after you attended the International AIDS Conference in Toronto last August. It hasn't been a year since then. How has going public changed your life? People can Google your name as soon as they hire you, and they can find out you're positive. Has that changed your friendships? Has it changed your work? Has it changed what it's like to go to the grocery store?

The amazing thing that happened, Bonnie, is that people felt I was accessible. After the article about me was published in my local newspaper, I had bank tellers in that town hug me as soon as I walked into the door and then take me to the side and say, "You know, Loreen, I have wanted to ask this question. Do condoms work? When should I tell my boyfriend that I want us to get tested?"

It kicked doors open like I never would have believed. It was actually the most positive thing that I have ever done in my life. And I want to tell you something about that: I showed the highest CD4 count, ever, in my 14-year history, right after I did the public disclosure.

Because so many people were so supportive.

Because I disclosed, yes. I took that weight off my shoulders. Some of us, some of my colleagues, are very interested in the neuroimmunology work that is being done on the mind/body/spirit connection. I'm happy to say that there are some medical professionals [interested in the field].

As recently as January, there was a young psychologist in Seattle who just published a paper that was published in Psychosomatic Medicine. I wrote to him immediately because what I have been feeling about this issue, he wrote about. He said disclosure boosts CD4 counts. So the psychic part of things is being looked at in addition to the virologic and immune system science of it. I'm a very interested person in all of this.

I have to tell you that in my life [disclosing] was the single most healthy thing I ever could have done for myself. I got phone calls and e-mails from people like you wouldn't have believed.

This was after the article in your local newspaper?

Yes.

Everyone read it?

Pretty much! It was phenomenal how many of my girlfriends who were involved in Internet dating called me, telling me that maybe they had unsafe sex. What should they do about it?

"Every day I wake up and realize that life is a gift. There's not a whole lot of time to be wasted. ... From a spiritual base I believe the world is a good place and that the possiblities are endless."

It was really amazing! It just seemed like as soon as I put that out there. people were wanting information. I think that's a very important thing these days, getting it out to the youth, dispelling these myths that still remain.

So you have been speaking to groups?

Yes.

Tell me about what you have done.

As soon as I got back from the International AIDS Conference I was invited to speak to the staff of a local women's center. After 22 years they had developed a wonderful group of people to counsel rape victims and domestic violence abuse victims. They asked our local Ryan White case manager and me to come in and speak to the staff.

It was a very positive experience. What surprised me, however, were the questions [the staff asked]. It was very elementary questions like, "How is the virus transmitted?" "Can you get it from kissing?" "How effective are the condoms?" Very elementary questions. So a one-hour booking turned into three.

A month later I was invited to speak to two classes. It was actually a human sexuality class in Fulsome, California. I was escorted by a friend of mine, who has been an HIV educator in that area for like 18 years. We had 70 kids both times. One was a day class and one was an evening class. The reaction from these young people was just so positive. They were so wonderful, so curious, and really asked very pertinent questions. They had their laptops and were very interested in everything that we had to talk about. We were also talking about HPV [human papillomavirus], hepatitis, other STIs [sexually-transmitted infections]. Even that class, even though it was an hour-and-a-half booking, turned into two-and-a-half hours. It's been an amazing experience.

Loreen poses in the Hosta Gardens at the U.S. National Institutes of Health, June 2006.

Loreen poses in the Hosta Gardens at the U.S. National Institutes of Health, June 2006.

So you have enjoyed that? You're planning on doing other --

-- Oh, I love it. I absolutely love it. Yes. And I would hope that I have the time to stay focused on the kids. I really think that's where it's important. The infection rate among 13- through 24-year-olds is just escalating. We're getting to desperate and dire straights with this. We need more people to get out there and speak to these kids. Absolutely!

And I guess finally, I wanted to close with something you could tell our audience. What has kept you strong all these years? Is it religion? Is it something spiritual? What do you hold on to in moments of extreme anxiety or fear?

You know, my work with plants has always been precious to me. I've been a gardener. I love everything that's growing. My doctors even told me, "You know, Loreen, I think your connection with the earth is really a large part of who you are."

Also, having a lot of compassion for people in trouble has kept me strong. I love helping folks. For me, personally, being in this circumstance, I think that every day I wake up and realize that life is a gift. There's not a whole lot of time to be wasted. I might sound Pollyanna-ish, but from a spiritual base, I believe the world is a good place and that the possibilities are endless. I can't tell you how exciting it is to talk to so many people who call me that are newly diagnosed. I just had a call from a young man out of Fort Worth, Texas yesterday. I just kind of dispel the fears and tell him, "You're going to be fine. Educate yourself. How is your support system? What are you doing in your life to support your immune system?"

There's a very interesting program that I would like to talk to you further about when we are done with our interview or another day. It's something called the L.I.F.E. Program, based out of San Francisco. A good friend of mine is the director of a group called the Shanti organization. Have you heard of them?

"I come from a very strong family. I've been independent. I try not to live in fear. I just believe in the good in people. You know what? It sounds strange to say it, but having HIV has made me feel more alive than I was before."

I've heard of them, yes.

Jeff Leiphart has implemented this really fabulous support group system called the L.I.F.E. Program. It's a 16-week-long support program that was initially just going to be implemented online. I believe today he is in nine separate cities in the nation. What they look at is the spiritual connection, your health regimen, your support group. He's got a really intensive questionnaire of about 240 points. Once they summarize your answers to those 240 questions they create an 18 co-factor list of areas that you could improve in your life. I've heard nothing but positive response from this. I'm fully, 100 percent behind this gentleman. He's the one whose actual got me to start thinking about the mind/body/spirit connection to living a more healthy and better life. I really think we're on the right track.

Do you think the mind/body connection has anything to do with your amazing health?

Me personally? I come from a very strong family. I've been independent. I try not to live in fear. I just believe the good in people. You know what? It sounds strange to say it, but having HIV has made me feel more alive than I was before.

On that note I have to end. Thank you so much.

Thank you, Bonnie.


LOREEN'S UPDATES
I moved to Sacramento because I sensed there was a job here for me, and my instinct proved to be true. Through an interesting chain of events (and a lot of Divine Order, which I outlined in my first blog segment), I was hired as the new Camp Director for Sunburst Camps on April 1! I have thus "retired" from my landscape design and contracting company, The Earth Tenders, which was 23 years old this past March. I was compelled to transition into the HIV/AIDS field after four years of extraordinary pulls to the work.

On April 15th this year, I turned 54 years old. (YIKES!) I will celebrate my survivorship of 16 years positive on July 25 with the staff and campers of 'teen camp' in the redwoods of northern California, at the Sunburst Camp known as Camp Cazadero. Blessings abound as the Great Spirit made certain that I would be surrounded by love and compassion on this day.

I have also recently launched my Web site for the Zephyr Foundation, an organization I envisioned two years ago dedicated to information about HIV controllers at-large, in hopes to locate eligible candidates for clinical research studies focused on my "group"'s innate control of HIV.


Updated June 2008

Click here to read Loreen's blog!

Loreen Willenberg can be reached via e-mail at lwillenberg@gmail.com.

Got a question about women and HIV treatment? Ask The Body's experts!

Talk to women about HIV at The Body's Community Center.

 

If you are a person with HIV or a medical professional interested in participating in the HIV Elite Controller Study, please contact Rachel Rosenberg, Research Assistant, at 617-726-5536, or click here to send an e-mail. You can also click here to visit the study's Web site.

Click here to read a transcript of the interview with Loreen from the AIDS 2006 conference in Toronto, Canada.

Click here to listen to an interview with Loreen from the AIDS 2006 conference in Toronto, Canada. (9.5 min.)

This podcast is a part of the series This Positive Life. To subscribe to this series, click here.


You can find this article online by typing this address into your Web browser:
http://www.thebody.com/content/art45911.html

General Disclaimer: TheBody.com is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through TheBody.com should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, consult your health care provider.