tired Long term non progressor


Hi Dr Bob!my name is Jacob,a fabulously positive gay male.I have been infected for almost 9 years now and have never had to go on treatment as my counts are still within a good range.Problem is,I have been unbelivably exhausted lately and was wondering if HIV itself can cause this and if so why?I live a somewhat healthy lifestyle,but lately i have been putting on some wheight due to drinking beer (iI know it's bad!!!But I have had a recent breakup with my boyfreind)maybe this is causing the fatigue? my other question relates to my surprisingly good health.Do u think I am a LTNP?Will I ever need treatment?Also,how rare is it that someone stays well after a near 9 yr infection?(I've had swollen lymph nodes and bowel trouble,that's all) Thank you Dr.Bob and let me add that you are defenetly the most fabulous Dr here and I wish I lived out your way!stay positive, yours truley,Jacob


Hey Fabulous Jacob,

Fatigue in the setting of HIV disease is incredibly common. In fact, it's the most common symptom we "virally enhanced" folks complain about! The underlying cause often turns out to be multifactorial, that is multiple causes working in tandem to zap our zip and steal our strive-and-thrive spirit. Some causes can be easy to spot while others defy easy diagnosis. Often it may take some collaborative detective work involving both you and your HIV specialist to figure out all the underlying causes for your blahs.

Review the archives of this forum for detailed discussions of the common and not-so-common causes of HIV-related fatigue. Make a list of these and then discuss them with your HIV specialist. Identifying all the underlying causes and treating each individually is the best way to get your groove back!

From your post I can identify several potential causes of HIV-associated fatigue:

  1. Weight gain. A few extra pounds can make a big difference in your energy level. Time to get back in shape and review both your exercise program and nutrition.

  2. Beer. Alcohol in excess will cause fatigue through a variety of mechanisms. Time to switch to Perrier.

  3. Breaking up with your boyfriend. Psychological causes for fatigue (depression, stress, anxiety, etc.) are very common and often under-diagnosed.

  4. HIV itself. Yes, even HIV can be fatiguing. This is, after all, a chronic viral infection. We all realize we feel tired when we get the "flu" or a common "cold" and any of a number of other common viral illnesses. Well, HIV is a viral illness that never goes away.

So your next step is to read the archives and then check in with your HIV specialist for a discussion of your exhaustion. He'll run tests to rule out other common problems, such as anemia, low thyroid hormone, low testosterone, etc.

As for your nine years of health, without knowing more about your specific case, Jacob, it's difficult for me to know if you are an "elite controller" (asymptomatic HIVers not on HIV meds who experience at least one year with HIV RNA below 50 copies/ml, i.e. undetectable) or a LTNP (asymptomatic HIVer who has been chronically infected for many years without experiencing "immune deterioration") or a long-term survivor (someone who's been HIV positive for a number of years, but who is still doing well on or off medications). I'll reprint some information about elite controllers below, as they are the most "elite".

Will you ever need treatment? Well, um, for some reason lately I've had the darnedest time trying to remember the future. In other words, I don't have a crystal ball. You'll have to ask Professor Sybil Trelawney.

How rare are long-term nonprogressors and elite controllers? Much rarer than we would like! Current estimates are that there may be 1500 elite controllers in the U.S.

Finally, thanks for your kind comments! I promise to stay positive if you do as well, OK?

Be well Jacob!

Dr. Bob

Who Are the Elite Controllers?

By Bob Huff

December 2005

Who are the elite controllers? No, they're not initiates of Yale's secretive Skull and Bones Society or members the Trilateral Commission. Elite controllers are people infected with HIV who have been able to suppress their virus without using antiretroviral medications. And Dr. Bruce Walker of Boston wants to meet them and find out how they do it. It's been appreciated for many years that some people with HIV do not progress to AIDS at the same pace as most. Typically, the immune damage of untreated HIV infection will lead to life threatening opportunistic infections within eight to 12 years. But some people have been infected for 20-25 years or more and have not yet experienced the severe loss of CD4 immune cells that signals AIDS.

These people have been termed long-term nonprogressors, and in the mid 1990s, researchers began studying them to try to understand why some people progressed to disease and others didn't. The ultimate hope was that whatever protective qualities these people carried naturally could be stimulated in everyone. There are also other long-term survivors of AIDS who have experienced immune damage but have managed to thwart the virus with treatments, although these people may also have had help from their immune system or a genetic resistance to HIV.

For Walker and colleagues at the Partners AIDS Research Center who are coordinating the study, duration of infection is not the main criterion; they are looking for anyone who can control their HIV without drugs. Elite controllers are defined as people with asymptomatic HIV infection not taking antiretroviral therapy (ART) who have experienced at least one year with HIV RNA below 50 copies/mL (undetectable). Participants must have at least three sets of test results documented within one year. Occasional viral load blips up to 1,000 copies/mL are allowable.

Walker estimates that there may be 1,500 or more elite controllers in the United States. The research group has already collected blood from over 100 people and has set a target of enrolling 1,000 elite controllers into the study. They are also interested in finding a similar group of people with asymptomatic HIV infection who, while not undetectable, do manage to keep their HIV RNA levels under 2,000 copies/mL without drugs. Walker calls these people, who may be much more common, viremic controllers. A long list of prominent HIV physicians have signed up to scout for elite controllers, but individuals who think they fit the criteria can contact Walker's group in Boston directly to submit a blood sample.

The study plans to use gene sequencing techniques of the Human Genome Project to construct a haplotype map for each participant, in hopes of identifying genetic factors that may be contributing to their ability to control HIV infection. A haplotype map allows scientists to look for variations in genes as they are commonly organized on the chromosomes. Advanced data analysis will evaluate if multiple gene variants are possibly associated with spontaneous control of HIV. Genetic sequencing and data analysis will be performed at the Broad Institute in Boston. Additionally, high resolution HLA typing will be conducted to look for genetic differences in these immune markers, and adaptive immune responses and antibody studies will also be performed. The entire genome of each person's virus will also be sequenced to see if some viruses are more controllable than others.

These new genetic tools allow researchers to take the closest look yet at what might make those lucky few who can control their HIV without drugs different from everyone else. If they can uncover some previously unrecognized protein or mechanism that is common to all elite controllers, then the next step will be to look for a drug than can safely produce the same effect in everybody else.