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HIV/AIDS Blog Central

HIV Controllers Speak: Our Link to a "Functional Cure" for HIV

By Loreen Willenberg

December 14, 2008

Sacramento, Calif.

Not all HIV-positive people are alike in their ability to control HIV. An estimated 1 in 300 HIV-infected persons around the world have a mysterious ability to control their HIV. Their viral loads and CD4 T-cell counts remain in the normal range without their having to take any HIV medications. Researchers call these individuals "long-term non-progressors."

As people who have read my blog before know, I am a lucky member of this exclusive group. But I'm writing about this again because I don't think enough attention is being paid to the amazing ongoing research with long-term non-progressors and the strenuous efforts to recruit even more of these people.

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For one thing, there are still so many long-term non-progressors in the world who are unaware of how critical it is for the entire HIV community that they volunteer for clinical research studies. Why is this so important? Many scientists, for example, believe that if we could only figure out the mechanism that causes people like me to control HIV successfully, we may find a cure for HIV or perhaps a way to prevent HIV from being transmitted in the first place.

For everyone reading this, imagine you've just been told that you might represent a "functional cure" for HIV -- that somehow your immune system or genetic make-up works to prevent HIV from spreading throughout your body. The only problem is that no one -- not even these brilliant HIV researchers -- can tell you why.

What would your first thought be? Disbelief? Confusion? Joy? Relief? What questions would you ask? Who would you tell? Would this information change the way you live your life? If not, why? If so, how?

For long-term non-progressors, learning about our unique immune system or genetic composition can be an empowering experience as we realize our remarkable potential to benefit the larger HIV community.

I am constantly amazed at how many members of the HIV controller community all say the same thing, that they want to help in any way they can, and will continue to contribute blood, cells and tissue samples to the studies for as long as they are needed.

In the four years since my own journey as a participant in these studies began, I have been humbled by the very real possibility that my "cousins of control" and I may reveal valuable clues to the breakthrough in this battle against HIV.

HIV Controllers Speak

While research continues in the academic and scientific circles, we seldom hear from the HIV controllers themselves. I've asked several members of this unique group for their thoughts on being linked to a "functional cure" for HIV, and here is what they have to say:

Jeannette, 32 (Washington State)

"I am all for this research and anything positive doctors, researchers and people are doing for this epidemic. I was diagnosed HIV-positive July 17, 2002 ... exactly one week before my 26th birthday. I had two options -- go into hiding, wasting a wonderful life with my family, friends and opportunities still waiting for me, or get up, wipe my knees off and move forward. I chose option number two and have never looked back since.

"I am not a hugely religious person by any means. I do believe there is a higher power than us. I know there is a reason for me being here, healthy without meds and blessed with three beautiful children. I do not question why every day, and am excited in taking part in the current research that is underway in Massachusetts after I deliver my daughter on December 17. Thank you for taking the time to read this."

Scott, 54 (San Francisco, Calif.)

"When I think about how hard the research community is working to figure out our mechanisms of control (of HIV), I realize how complicated and difficult the process is. I worry that a vaccine may not happen in my lifetime, and because of this worry, I hope that more publicity happens to shine a brighter light on the topic of HIV controllers and their importance to science. Efforts like the Zephyr Foundation are important in getting the word out, because this is how the epidemic will be changed."

Pam, 50 (Brooklyn, N.Y.)

"Knowing there is a possibility that a cure for HIV/AIDS may someday come about through elite controllers such as myself is almost unreal! Once I learned that I was different (in the way my body reacts to HIV infection), I had to do whatever I could to help. I don't care about being a "chief" -- I just want to be an "Indian" (so to speak) in this HIV arena. I, like everyone else who learned they were HIV positive, felt that this disease was "dirty." Every month when I did the "woman thing" I cried because my blood could actually hurt someone else. I became overly protective of myself and others.

"Today, I thank people like Loreen Willenberg who take time out and explain things to me that I don't understand about elite controllers. I knew all my life that I was different, I just didn't think HIV would be the thing to bring it out of me. I pray that my blood can help somebody, and I pray every time researchers take our blood (samples) that more news will be found. I love the position we elite controllers are in, as we somehow have been 'commissioned' to educate others about the remarkable circumstance we live with -- including the medical professionals who care for so many. It would seem that we do represent the future in some way."

Background

You can see that I'm not alone, even if I'm one of the few HIV non-progressors who is outspoken and public.

So now I'd like to share a little bit of the history of HIV non-progressors. The first description of "long-term non-progressors" was in early January of 1995, when the researchers at the National Institute of Allergy and Infectious Diseases (NIAID) published a paper in the New England Journal of Medicine detailing studies of a small minority of HIV-infected people who remained healthy for many years without loss of immune function.

Long-term non-progressors were not only named at this time, there were also rather strict definitions of who would qualify as members of this group.

The following individuals could qualify as long-term non-progressors:

  • Individuals who had been infected with HIV for seven or more years, and
  • Had stable CD4 T-cell counts of 600 or more cells per cubic millimeter (mm3) of blood, and
  • Had no HIV-related diseases, and
  • Had no previous antiretroviral therapy.

Of the 15 people that had been studied in this very first NIAID study, 13 had been infected for at least 10 years. All 15 had high counts of CD8+ T-cells. (Viral loads were not discussed in these findings, because viral load tests were not available until the following year.)

Dr. Anthony Fauci, director of NIAID, was a co-author of the paper and he said, "Further study of these individuals may lead to insights into the mechanisms that prevent progression of advanced HIV disease."

This is the critical point. If people like me can somehow control HIV naturally, wouldn't it be great to discover this mysterious ingredient and share it with the millions who need medications to control their HIV?

Over the past decade, studies of long-term non-progressors have expanded throughout the United States and into Australia, Canada, France, Italy and Spain to advance discoveries on the unique methods of control that are exhibited by these rare individuals. Scientific papers on the topic of HIV controllers (as we are now called) have multiplied as more is learned about our immune responses to the virus and genetic factors that may contribute to our control of HIV.

Following years of long-tern non-progressor studies on a small scale, in 2006, Dr. Bruce Walker, the renowned immunologist and HIV/AIDS researcher in Boston, Mass., launched the International HIV Controller Study, an unprecedented multi-institutional effort to search for and recruit additional study subjects in two categories to attain 1,000 "elite controllers" (viral loads below 50 copies, no history of medication) and 1,000 "viremic controllers" (people able to maintain viral loads at or below 2,000 copies, without medications). This goal is a herculean task, as many scientists claim that finding a "controller" is like "looking for a needle in a haystack"!

Progress

When I enrolled in Dr. Walker's study in October of 2004, there were only 65 participants. As of today, there are 450 elite controllers and approximately 708 viremic controllers enrolled in the Boston study, a remarkable number when you consider how difficult it is to find us.

In addition to the current number of participants who contribute to the International HIV Controller Study, I though it would be interesting to learn more details about the HIV controller group as a whole, including where they live, the ethnic groups they belong to and their genders.

My request for data was kindly granted by two of the most prominent research professionals in the field, Dr. Walker and Dr. Steven Deeks (University of California, San Francisco -- S.C.O.P.E.).

These breakdowns are only estimates and are not a reflection of the general population of HIV controllers.

International HIV Controller Study -- Boston, Mass.:

Cohort totals: 450 elite controllers, 708 viremic controllers
Demographics: 86 percent of the participants come from the United States and Canada, 13 percent from Europe, 1 percent from other regions
Ethnicity: 28 percent African American, 1 percent Asian & Pacific Islander, 56 percent Caucasian, 8 percent Hispanic, 1 percent Native American, 1 percent Asian & Pacific Islander, 6 percent from other regions
Gender: 32 percent female, 67 percent male, 1 percent other sexual identity
Average age of cohort: 47
Average duration of infection: 12 years
HLA-B*5701 positive: 30 percent to 40 percent
CD4 and CD8 T-cell count: Not reported

S.C.O.P.E. Study, University of California at San Francisco -- San Francisco, Calif.:

Cohort totals: 80 elite controllers, 135 viremic controllers
Demographics: Not reported
Ethnicity: 37 percent African American, 2 percent Asian (Pacific Islander not reported), 43 percent Caucasian, 8 percent Hispanic, 1 percent Native American, 9 percent other (mixed race)
Gender: 21 percent female, 79 percent male
Average age of cohort: 44
Average duration of infection: 14 years
HLA-B*5701 positive: 40 percent elite controllers, 30 percent viremic controllers
Average CD4 T-cell count: 675 at baseline. CD8 T cell count not reported

The hope, of course, is that the more long-term non-progressors we have enrolled in clinical research studies, the greater the opportunity to study them and make critical discoveries -- either towards creating a vaccine or a unique HIV treatment.

Longtime activist Martin Delaney used the term "functional cure" in 2001 to describe the suppression of HIV through medications in an outstanding article entitled "Here Comes the Cure" [POZ Magazine, January 2001]. Do HIV controllers imply a "functional cure" for HIV infection? Here are some remarkable comments:

"If the mechanisms of control can be defined (in HIV controllers), they can help in the design of an HIV vaccine" -- Dr. Guido Sylvestri, associate professor of Clinical Pathology at the University of Pennsylvania, at the very first HIV/AIDS Vaccine Summit sponsored by the National Institutes of Health in Bethesda, Md., in March 2008.

Dr. Anthony Fauci, during his presentation entitled "The Future of AIDS Research" at a special session held at the 2008 International AIDS Conference in Mexico City, claimed that HIV controllers clearly represented a "functional cure" for HIV "given their natural suppression of HIV infection."

In an opinion piece for the Wall Street Journal, Dr. Luc Montagnier recently wrote about the complex nature of HIV and the challenge it represents to the design of an effective vaccine. He said, "We now know that protection against HIV is possible in natural conditions" and acknowledged there are "(similarly), some rare individuals (who) become infected with HIV but do not progress toward immunodeficiency and AIDS." He continued, saying, "We want to extend what Mother Nature bestows upon a few lucky individuals (infection without disease) to a majority of patients."

So if you are someone who belongs to this tiny group of HIV-positive people, or you know someone who belongs to this group, please, please find the closest clinical trial and volunteer. Visit this link to see what studies are currently enrolling. Often you need only send a blood sample ...

To contact Loreen, click here.

See Also
More Personal Stories of HIV Long-Term Nonprogressors

Reader Comments:

Comment by: Alex (Toronto, Ontario, Canada) Wed., Mar. 10, 2010 at 8:23 am EST
Thank you for this. I am also part of the Bruce walker Controller Study in Canada. Despite having been diagnosed with this disease for 7+ years, I have always felt blessed and lucky. I try to contribute back as much as I can. It is wonderful to see that there is a community and forum, where we can gather information and potentially help direct the future of a HIV vaccination, or at least assist in management of health. Look forward to following this blog and The Body, even more so now. There hasn't been much literature about us. It is very empowering, to be given the chance to participate in these studies, but even more empowering if we know what the path is, or where we fit into this puzzle called HIV.

I applaud your openness and believe information is always the path to freedom.
Many thanks, Alex
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Comment by: KS (Washington State) Thu., Dec. 24, 2009 at 12:58 am EST
I am a 32 yo female embarking on my 16th year of HIV infection. I have not needed medication for at least 9 years and feel extremely healthy despite my increases in VL and decrease in CD4 counts. However, even with bouts of common illnesses, I recover quickly and I don't have any additional decline in my health. I do not do well with taking my meds consistently, with the longest period of being on a somewhat steady routine of HAART in 1999 for perhaps 1 year. We all have heard the damage that stop/start and missing does can do, however I seem to have experienced the opposite effects. In one instance, I was on my own improvised "med holiday" and was concerned about the presence of a pea sized lymph node in my neck. My tests had shown that indeed there was a dramatic change in my counts for the worse. However the combo I was on that year had not shown fast reactions in my immune system as prior combos had, even though my counts never required me to take meds. I was scared so I resumed my meds properly and went from bad numbers to unbelievable numbers, as if the mess ups on the meds before created a positive response in my immune system. A panel of researchers wanted further review and didn't find anything significant that I can recall. So what I would like to know is what is going on with LT infected that don't do much differently whether on medication or off? I am not provoked at this point to go on medications and I don't want the numbers to tell me how I physically feel and my ability to fight off other infections. But if some studies were to show proof of necessity to take medications and the concrete evidence of why or why not, I would be very interested in this aspect of the immune systems that respond well with or without meds and regardless of blood numbers. Another odd experience is that my only HIV symptomatic ill is CIS/HPV and of 15 years of problems has not been present for nearly 2 years!
Thanks for your work here and I look forward to more research!
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Comment by: Loreen Willenberg (Sacramento, CA) Wed., Jun. 3, 2009 at 12:29 pm EDT
Hello, Mike!
You are very gracious, thank you. Glad to help clear up any confusion - I'm on a learning curve, too. You were unique before you learned you were an HIV Controller, and you are unique, still. It's a pleasure to hear from you, and I hope to again.
All the best to you - Loreen
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Comment by: Mike (US) Wed., Jun. 3, 2009 at 7:55 am EDT
Dear Loreen:
Thank you for that further information. It does help to know that such a vast amount of people are involved in doing this research and this amount of money that was generously given needs to last over 10 years. I do not feel that I have been taken advantage of, as this information and the more research I do adjusts my thought process. I am one of the 2,000 estimated hiv controllers and I will continue to participate in any way I can. I have always wanted to help in some way and now I have that opportunity. I have checked the Grants website and it contains many Grants for HIV and AIDS research. There are more funds available for our cause. Thanks so much!
Mike
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Comment by: Loreen Willenberg (Sacramento, CA) Wed., Jun. 3, 2009 at 12:07 am EDT
Mike -
I encourage you to put the recent donation from Mr. & Mrs. Ragon for $100 million (to be spread out over 10 years to Mass. General Hospital, MIT and Harvard to create a brand new 'Ragon' AIDS Vaccine Institute w/Dr. Walker at the helm) into this perspective: The intent of the gift is to speed up the research by freeing up the scientists from an intensive grant application process (that essentially sucks up most of their time). While these sums of money sound staggering, you must realize the mammoth challenge that HIV has presented to science. The collaborations that occur on a daily basis between all disciplines - immunologists, virologists, geneticists, epidemiologists, etc. - literal armies of dedicated professionals trying to find a cure, or, at the very least, a therapeutic vaccine - do not come cheap. That said, while I totally respect your right of opinion, I can't agree with your claim of 'misuse of funds'. The devastation caused by this virus over 30+ years, the destruction of people's health, their lives and the loss of life - if we could fathom the toll this virus has taken and cost humankind - well, the generous investments from Gates & Ragon have merely put a dent in the figure. Change is coming, Rae, for those of us who participate in these studies and can least afford it. It is important for us to keep contributing to the studies, so don't lose heart. There are 40 million HIV+ people depending on us!

Hope to hear from you at Zephyr. Be well, and thanks for all you do!

Loreen
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Comment by: Loreen Willenberg (Sacramento, CA) Tue., Jun. 2, 2009 at 9:28 pm EDT
Hello Mike -
You certainly do raise a valid point about the inherent value of an elite controllers sample of blood (or cells, or tissues), considering our extreme interest to science coupled with how difficult we are to find.

Every research institution approaches 'stipends' for our contributions differently, which makes this issue a complicated one (so many institutions). From what I understand, stipends are definitely tied to available funds to the particular research study, and, depending upon how successful the team is with their grant applications, the 'lab can' (a term used for dollars available to pay participants for samples) can be rather small - hence your $25 stipend.

This subject, and another one related to out-of-pocket expenses for those of us who travel to contribute directly to the studies (either short or long distances, say, from the west coast to the east coast, for example), are a couple of reasons I established the Zephyr Foundation back in 2006. [Yesterday we announced the launch of our interactive forum for HIV Controllers on our website: http://www.zephyrfoundation.org - and it's discussions like yours and mine that I hope to support. I invite you to send an email to me at lwillenberg@zephyrfoundation.org if you are interested in joining the forum.]

The frozen blood bank is important as it supplies samples to other research entities conducting studies on our unique 'group' in far-away places, where travel to provide fresh samples would be prohibitive. On a personal note, however, knowing my samples are available to future scientists (perhaps following my demise) gives me a certain satisfaction that is priceless, since future generations may benefit from a 'special something' inside my sample long after I'm gone.

(Continued in another posting....I've reached the max on this one!) - Loreen
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Comment by: Mike (US) Thu., May. 28, 2009 at 10:47 pm EDT
I was enrolled in the elite controller program in Milwaukee at the AIDS center, Director Dr. Fangman. I gave 7 tubes of blood and was happy to be of any help to this cause. Upon reading all of the information in the form I signed when I gave that blood, I learned that my blood will be frozen and may be used for future testing. That they will hold my blood as long as they feel necessary maybe FOREVER, that was the exact wording on the form I signed.I received 25.00 for those 7 tubes of blood.

Upon doing my own research I have found that Harvard University is receiving 100 million in grant funds and another 500 million in grant funds for AIDS research along with other disease research.

I was very disappointed that my worth as a controller amounted to only 25.00. I am on a limited income and believe that this is misuse of funds including all of the other research programs, past or present or in the future, that our worth to them is that minimal.

I am not concerned with making money here, I just want to be valued as we all should be valued...certainly more than 25.00, does that even buy gas to get to the testing site?

Please comment and let me know if any other controllers think I have a valid issue.

Thank You, Mike

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Comment by: Loreen Willenberg (Sacramento, CA) Mon., May. 4, 2009 at 11:28 pm EDT
Gosh, Jane, thank you, thank you very much. :)
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Comment by: Jane (Oakland) Wed., Apr. 22, 2009 at 12:40 am EDT
I think you're brave and I appreciate your honesty
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Comment by: Loreen Willenberg (Sacramento, CA) Fri., Mar. 27, 2009 at 3:36 pm EDT
Hi Patricia (Bronx)- thanks for writing in - yes, it would seem that you are indeed a member of our 'unique' group with those stats. I will get in touch with you via email; if by chance you don't hear from me, you can get linked to studies on my website - http://www.zephyrfoundation.org - look for the 'Links' tab on our homepage. We need you!
Diane (New Mexico): Good to hear from you! I'm glad you were informed about the studies - thank that person for me! The more of us that get involved, the faster discoveries will come! Be well!
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Comment by: patricia (bronx new york) Thu., Mar. 26, 2009 at 6:11 pm EDT
I would like to be a part of this study.I was diagnosed in 2003 and I have maintained a undetectable viral load and a cd4 over 1500
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Comment by: diane (new mexico) Thu., Mar. 5, 2009 at 4:58 pm EST
I believe I may be one of these "long term non-progressors" people. I was just diagnosed almost four months ago. I was asked yesterday if I'd be interested in joining a study about "long term non-progressors". I had no idea until today after reading this what the heck they were talking about, but I was going to do it anyway. Now I see what's it's about and even happier to help do so good for us all!! I hope I will have more information to share with everyone or I get more information to learn about...Let's keep our minds open and do all we can to keep this creapy virus from collecting any more people!! Let's live long and healthy...
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Comment by: Ms.Tee Ross (Florida) Fri., Feb. 27, 2009 at 10:11 pm EST
I just discoverd that I am HIV positive my T-cell started out at 808 and within 6mos they dropped to 700. I wanted to know what type of multi vitamins are good to take. I read a article about taking vitamin c 1,000mg and vit e 1,000 di-Alpha is this ok to take
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Comment by: Loreen Willenberg (Sacramento, CA) Wed., Feb. 25, 2009 at 7:48 pm EST
Hello Lisa (San Antonio, TX): Please pardon my tardy reply to your kind comments -- I started a new job and my days just fly by! In regard to your query on one's genes and HIV, research is on-going on individuals who are exposed to HIV and do not become infected. These people are rare, but they do exist -- you may be one of these, from what you say. Studies in the genetic realm are becoming more common, so keep your eyes open to articles in the near future! Thank you for all that you do to educate your community!!

Hi Lystra (San Francisco, CA): I am glad that you are doing so well! A positive attitude and strong faith in tomorrow are always good ideas when one is HIV-positive. I appreciate you taking the time to read my blog on HIV Controllers, it means a lot to me. Take care!
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Comment by: lystra evans (san francisco, CA) Tue., Feb. 24, 2009 at 7:45 am EST
it's a sign of hope seeing this article and the new possibility of one day finding a cure. i at present, am HIV positive and have a CD4 of 400, and though i am worried about the future.... i have been blessed to have a husband (negative) who knows of my status, and a baby (also negative)... around them i feel happy,,, i feel accepted and normal. i believe with all my heart... that a cure can be found and also that if u have a lot of faith in God , you can fight this disease.. that's what i'm doing now... and i feel as healthy as any other person....i always dream that my next blood test is going to be my miracle... that things wil be perfect with my CD4 and i could say"i knew i was ok". i live in the now.... and the now tells me i am well... and that's the faith that i use to go through each day,.. thank you all for this article and even greater faith in an AIDS free world!!
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Comment by: Lisa (San Antonio, Texas) Sun., Feb. 1, 2009 at 12:07 pm EST
I dated a guy about 14 years ago. He was HIV+ but he never told me. We dated for about 2 years. We never had protected sex. While we were dating, other people would tell me that he was HIV+. He denied it every time. I was tested for HIV before him, during our relationship and plenty times afterward. My results have always been negative. But when I was dating him, I started to research more about HIV/AIDS. He had many signs. He had diarreah many times early in the morning. He had night sweats. He also went blind for a period of time. There were a few times whem he was in the hospital due to gastrointestinal infection (but I remember calling it "gastroidize"--made up name). Two years later after we broke up, I was informed that he was in the hospital with full blown AIDS. I told the person who informed me that I was negative. I got tested again. It was negative. I thank God for not having this virus and I'm educating people about this disease as of this day. I am curious. I was told that the virus doesn't always attach to everyone's immune system and that is why some people do not get HIV. It has something to do with a gene you get from both of your parents. Is this true? I'm grateful for every day I live and want to help other people.
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Comment by: Loreen Willenberg (Sacramento, CA) Sun., Jan. 25, 2009 at 4:18 pm EST
Hello Creighton!! How terrific of you to chime in and offer such kind words of support! You watched from the beginning when I found my voice and I'll never forget it - Thanks for your selfless contributions to the Controller Study, my friend! Be well!!
David (New York City): I know that we have spoken before and thanks for sharing your story. I sincerely hope that you continue to do so well, and appreciate your contributions to research, too!
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Comment by: Creighton (Austin, TX) Thu., Jan. 22, 2009 at 12:27 am EST
Thanks for championing this, Loreen. The more people that are aware of your work, the better chance we have for better treatments and quality of life for the millions of us that are living with HIV/AIDS.
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Comment by: David (New York City) Mon., Jan. 19, 2009 at 8:08 pm EST
I discovered I was positive after donating blood at work. I found out New Year's week of 2004 when I found a letter from the blood center in my mailbox, requesting that I report to their offices over a urgent matter. It was the worst New Years of my life. My friends and family had noticed over Christmas that I had lost weight. I had somebody force themselves on me for just seconds during a date a month and a half before, I was raped. I did not worry about it at the time because it was so brief. My docs said the person must of had a very high VL to infect me so easily. The person had moved and could not be found when I discovered I was positive. I was going to have him arrested. I always played safe. I felt so much anger. I was still seroconverting when I had my first VL test according to my doc, because I was lacking one band. He was shocked I was undetectable at seroconversion and my percentages were so high. He had never seen that before in somebody newly diagnosed. He thought it could be a false positive, but it turned out it was not. I have remained undetectable ever since, with 3 tiny blips of less than 100 copies, which they think could have been lab errors. My cd4 count is highly time of day sensitive, and can be 400 at 7AM and 1000 at 8PM. Most doctors are unaware that there can be such a swing from morning to night in cd4 counts, but uninfected people have such swings upwards during the day. My cd4 percentages range between 49%-51%, depending on the lab used, very high normal. My cd4/cd8 ratio ranges from 1.86 to 2.2, very normal and not inverted. When the NIH did the one copy assay, I was less than one copy of virus. I thank God everyday for my good fortune. I participate in all of the major studies, and hope they can discover the secret to my great immune system. I am not HLA B57 or B27, but I am B51 and B44.
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Comment by: Loreen Willenberg (Sacramento, CA) Fri., Jan. 16, 2009 at 1:45 pm EST
Hello Andrea (Philly): Thanks so much for your words of encouragement, they are very special to me. Although I am sorry to know that you have been diagnosed as positive, I am so glad to hear that you are educating yourself about HIV because knowledge is power in the long run. Becoming your own best advocate is an important key to living with this virus, so I encourage you to keep doing that! My best wishes to you - always!
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Comment by: Andrea Johnson (Philadelphia, PA) Thu., Jan. 15, 2009 at 12:04 pm EST
As I still consider myself to be new in this epidemic, infected July 11, 2007, I am always researching and overjoyed to hear how persons such as yourselfs, LTNP, are doing great things in helping to find out about how this is happening, so that just maybe a cure is within our horizon due to your awesome efforts. God Bless you ALL and lets continue to work together to bring an end to HIV/AIDS within our lifetimes. AJ
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Comment by: Loreen Willenberg (Sacramento, CA) Mon., Jan. 12, 2009 at 6:24 pm EST
Hey John it's so nice to hear from you today! Thanks for posting your comments, I really appreciate your support over the years as I have found my voice, and I want you to know how much it means to me. As for additional ways for you to help, have you considered participating in the LTNP Study at the NIH? They are always happy to meet another 'cousin of control' - get in touch with me via the Zephyr website & I will give you the contact info for them. Thank you for your contributions to research, as well, my friend!:)
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Comment by: John (San Francisco) Mon., Jan. 12, 2009 at 12:30 am EST
Loreen, we've communicated before on aidsmeds.com, and I just wanted to tell you again how much I appreciate your dedication to this research. I guess I'm in the "viremic controller" category, at least for now, and I've been participating in Jay Levy's study at UCSF for the last few years. I also donated blood to Bruce Walker's study. If there's anything else I can do, please let me know. I'll help in any way that I possibly can.
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Comment by: Loreen Willenberg (Sacramento, CA) Sun., Jan. 11, 2009 at 10:18 pm EST
Hello Paul (New Orleans): I appreciate your comment very much - and wish you all the best in this new year. I promise you that I will continue my donations of blood, cells and tissues to research while keeping all of you in my heart!
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Comment by: Paul (New Orleans) Sat., Jan. 10, 2009 at 11:53 pm EST
Thanks so much for your help. Non progressors we do need your help and is very much appreciated by us and our loved ones!

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Comment by: Loreen Willenberg (Sacramento, CA) Mon., Dec. 29, 2008 at 9:23 pm EST
Hi Ron (Ohio)- Thanks for chiming in! What you say is very true - that the spontaneous control exhibited by our group is very complex. Genetics may play an important part and the Boston study is working closely with the National Human Genome Institute in that direction. Investigators at the National Institutes of Health (NIH) recently published a paper related to the discovery of two particular proteins (perforin and Granzyme B) produced in large quantities by the CD8 T-cells of LTNP's. Ultimately, I believe that several modes are at work inside of us, and the pieces to the puzzle have yet to fall into place. Stay tuned!
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Comment by: ron (ohio) Sun., Dec. 28, 2008 at 10:25 pm EST
I am a ltnp and have never eaten any special foods. Just an american diet and don't take vitamins. the point is that this thing in the bodies of ltnp is more complex and the researchers haven't figured it out yet!
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Comment by: Loreen Willenberg (Sacramento, CA) Sun., Dec. 28, 2008 at 8:16 pm EST
I appreciate all of you taking the time to read my blog entry and to share your comments, especially during this busy time of year!
David in Colombia: I have not followed any particular diet or taken vitamins or supplements - I do try to eat very healthy foods (not processed, no 'fast' foods)and am careful about my intake of sugar & salt. Moderate amounts of proteins from red meat (if at all), lots of veggies/fruits, and love trail-mix (dates, nuts & dried fruit!). I am personally very interested in comparing notes on diet, etc., with other folks in our unique group.
Healed Lee from NC: I believe that the investigators will eventually find several different categories of 'non-progressors' as they learn more about HIV controllers. So glad to hear that you are doing so well!
David from LA: Thank you for volunteering for other research studies! I agree that a positive attitude is certainly helpful, no matter what the challenge is!
Nikkie in Houston: Thank you for sharing some of your amazing story! It is good to hear how well you are doing, and I wish your family the best!
Jeff from Fort Wayne: Stepping forward to participate in studies has been one of the most satisfying things I've ever done - and, like you, feel it is my duty to do so. I have met many heroes along the way, and that includes folks like you! ;) Be well!
Eddy in the UK: The more we circulate the story of HIV Controllers, the more likely that more will be found - all of us can help by sharing the news with our doctors, our support groups, anyone we can! Thank you so much for your kind words of encouragement from across the 'big pond'!!

Happy New Year to All - and thank you so much!
Loreen
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Comment by: David (Colombia) Fri., Dec. 26, 2008 at 1:07 pm EST
I would like to know if this LTNP have eat similars foods, which vitamins and minerals take?
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Comment by: Healed Lee (Greensboro, NC) Fri., Dec. 19, 2008 at 9:42 am EST
I am a nonprogressor and have been since 2001. I have never been on meds and I thank God for that. After reading this article in its entirely, I am convinced that I need to look into these trials. My cd4 has been anywhere from 780-1000 with a viral load no more than 4000 and I have never been on medication. I would like to thank all of my fellow Poz family members for taking a stand
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Comment by: David (Los angeles, Ca.) Thu., Dec. 18, 2008 at 3:00 pm EST
I believe we can all be non-progressors, just keep your Immune system strong with natural herbs, vitamins and minerals. My viral load has gone from 12000 to 3000 and t-cell 500 to 750 for the last several years with no meds. Every test gets better as time goes on. Keep stress at a minimum and keep a positive attitude works for me. I have volunteered for several studies and will continue to.
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Comment by: Nikkie (Houston,TX) Thu., Dec. 18, 2008 at 11:18 am EST
I am too very encouraged by the number of LTNP's. I too, like Eddy, have been positive for a long period of time and has not progressed. The only time that I have ever taken any meds was when I was first diagnosed then soon stopped taking them, then the only time after that was when I was pregnant with my two sons. Anytime my viral load went above 15,000 my immune system just kicked in and got it under control. My CD4 count has always remained between 430 and 600. In a non-HIV positive person their CD4 count is 500-600. I am so thankful to have not had any opertunistic infections. I have been positive for 10 years in May 2009. I asked someone working at the CFA about that and they told me that was because my immune system was always in hyper drive. The reason she said that is because I also told her that out of five pregnancies I only have two kids. I always had a miscarriage with the other three. I asked the doctor what happen to the babies, they told me it was because my body thought it was something forien. Also with my last son, I was bleeding for five months of my pregnancy and had him at 7 months. I know I am not a non-progressor but I am somewhat just like them. I really hope that more of the LTNPs stand up and help this disease that is hurting others that are not so lucky. Thank you in advance for all your help in finding a cure or vaccine.
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Comment by: Jeff (Fort Wayne, IN) Thu., Dec. 18, 2008 at 8:24 am EST
I am so encouraged by the # of LTNP's. I was diagnosed HIV+ on October 30th, 1990 and have only been on antiretroviral meds for a total of 3 1/2 years out of 18 years of knowing my status. The last time I actually was on a med program, was almost 8 years ago. My viral load has never been above 14,000 and my CD-4 count has constantly remained around 400-500 even without meds. I have also remained asymptomatic for 18
years. I am greatly appreciative of other LTNP's speaking out and taking that extra step to participate in additional studies. HIV has been, can be, but I believe doesn't have to be, DEADLY. If by coming forward and participating in studies, etc. might lead to a vaccine, cure or a guaranteed improvement in the length and quality of a persons life, I feel that it is our duty as LTNP's to help in any way possible. We are not only survivors, but can be, and should be heroes as well.
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Comment by: Eddy (United Kingdom) Thu., Dec. 18, 2008 at 6:15 am EST
You long-term non-progressors are so important to us. Thank you. You are doing so much for us already. But if you have the energy to try and find more non-progressors to help with the research, PLEASE DO. Having this disease severely restricts the lives of many. "Many" is probably a number in the millions.
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BLOG: Life as an Elite Controller

Loreen Willenberg

Loreen Willenberg
Photo credit: Bob Roehr

Loreen Willenberg, a resident of California, has survived HIV infection since 1992. She is part of a tiny group of people with HIV that scientists call "elite controllers." 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. In fact, she's created a new organization for people like her called the Zephyr Foundation.

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