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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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By Bonnie Goldman

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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.

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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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