For Me, HIV/AIDS Is Not a Chronic, Manageable Disease


I am not a researcher -- I can only speak from my own experience -- but far too many people mistakenly believe that HIV no longer causes chronic illness because of the potent anti-retrovirals available. Over the last five years in particular, I have become aware that both doctors and the non-infected public have the ill informed opinion that HIV/AIDS is completely controlled by medications. The belief that HIV/AIDS is no longer a health threat has caused many to become complacent about avoiding infection and has also caused many to view the illnesses of the HIV infected as unimportant.

Most people do not know that the anti-HIV meds do not eliminate all the virus from the body; they merely reduce levels of the virus to undetectable levels, or less than 75 copies per milliliter of blood with commonly used tests. At these undetectable levels, the blood of a 180 pound man may contain as much as 431K copies of HIV.1 That viral load does not include the unknown thousands of HIV copies lurking about the body. At these levels the virus still has an inflammatory effect on the body.

This volume of HIV also creates an environment in which over time the virus can mutate and become resistant to medications. We have been lucky thus far that researchers have been able to develop new meds that attack the virus at different stages in its replication cycle. However, researchers are beginning to find that despite treatment with anti-HIV medications long term HIV infection causes physical and neurological damage. A recent article in New York magazine summarized these research results.2

I am particularly interested in the neurological effects of long term HIV infection. I was diagnosed with HIV infection in September 1984. In 1994, my personality dramatically changed. I went from a happy-go-lucky guy to an angry guy who would pick fights over the least insult. People at my church became so concerned about my behavior after a series of noisy fights punctuated with expletives that a member of the church's governing body, the Vestry, accompanied me whenever I was at church. I would stare balefully at people in restaurants if I thought they were insulting me. Once I licked my lips in a suggestive manner while staring at a woman in a restaurant.

The acme of my misbehavior was one morning that I hit a woman, terrorized another by lying on her car hood as she tried to drive away from me and spit at another woman. I was nearly arrested and was sued for 2 million dollars for emotional distress. That case settled out of court for lawyer's fees. At graduate school in Scotland in 2002-2003, my behavior was more controlled but I did get into a fist fight with a Canadian guy who hated Americans.

I came back to the US from my sabbatical in 2003 and again took up my work as a Supervisory Investigator in the Los Angeles office of the government agency for which I had worked for fourteen years. My work was very demanding as I supervised a team of ten investigators who performed complex audits of the investments of private pension plans. Four months after returning to work I contracted pneumocystis pneumonia and was out on sick leave for two months. The next year I began to have pain in my feet that made walking difficult as well as episodes in which I lost strength in my arms and legs that caused me to walk with a weak, shuffling gait.

Soon after I began to notice that my concentration and memory were not as they had been. During this time, while giving a lecture to two hundred paying students, I suddenly lost my ability to explain my topic and could not answer students' questions. I had given lectures on this same material for years; but, as a result of that humiliating experience, my Agency never again allowed me to deliver lectures. I also had several loud arguments with neighbors during this time, one of which resulted in a call to the Los Angeles Sheriff's Department.

My declining cognitive capabilities caused me no end of trouble at work. I was constantly forgetting things. My analytical abilities, for which I was famous, deteriorated alarmingly. I began to have wide swings in mood so that I was either hyper energetic or so sad that I spent hours staring at the wall. My employees were shocked by my energetic periods because I became a different person.

In 2007, my Infectious Disease Specialist, Dr. Kimberly Shriner, referred me to a neurologist at UCLA, Dr. Elyse Singer, who is an experienced HIV/AIDS neurologist. After a year of tests, including a three day psychological exam, Dr. Singer diagnosed me as having early second stage HIV dementia. The diagnosis was a shock and I became suicidal. One threat was so believable that my partner and Dr. Singer planned to have me placed on a 72 hour hold at a psychiatric hospital. After a two hour telephone call between Dr. Singer and me, she changed her mind on the need to have me forcibly detained.

Shortly thereafter, I began to see a psychiatrist who diagnosed me as having bi-polar disorder, major depressive disorder, and mild dementia. I told him during one of our sessions that I could communicate with the dead. For years I had seen ghostly images and heard voices speaking to me; however, this so-called psychic ability was merely the result of HIV damage to my brain. The psychiatrist started me on a course of antipsychotics and antidepressants. With my depression under control, I realized how depressed I was before starting medications. My hallucinations stopped and I no longer communicated with the dead.

At the same time I was diagnosed, I began to notice that the men in my AIDS support group all complained of depression and many of them spoke about periods of hostility and inappropriate behavior. All of these people have had HIV for ten years or more. This observation convinced me that many people with long term HIV infection have significant neurological damage. One member of my support group has neurological damage to the point that he walks on his toes with a shuffling gait and has severe major depressive disorder that is not adequately treated by antidepressants.

As Dr. Singer, the UCLA neurologist, explained to me after she gave me my diagnosis, HIV infects cells in the brain that, when they die, release chemicals that cause adjacent brain neurons to die. This infective process can go on despite anti-HIV meds because the blood-brain barrier excludes some drugs from the brain. [View a chart of several HIV meds and their level of penetration of the blood-brain barrier; or read a discussion on brain-related complications and HIV/AIDS between's editorial director and noted HIV/AIDS specialist Pablo Tebas, M.D.]

The primary targets of HIV are the mood controlling structures in the brain and then later the cognitive parts of the brain and then those parts that control the limbs. The cognitive effects of HIV infection are primarily in the executive brain functions which allow us to choose between competing actions, to assimilate new information, and to analyze data. Because the executive functions are most used by professionals, early HIV dementia is most often diagnosed among those people. I am one of those professionals. Due to damage to my executive function, I retired on disability in 2008.

We have learned that not only can HIV cause psychiatric problems; it can also cause osteoporosis and early onset osteoarthritis. I have both. If you Google "HIV + Aging" these days you get numerous citations. This is a hopeful sign. However, many doctors and the non-infected haven't gotten the word that HIV is not entirely controlled by meds and that significant amounts of the virus remain in the body. Over time, HIV ravages the body, leading to what are normally the diseases of old age, dementia, osteoarthritis, and osteoporosis.

HIV is not for the faint of heart. The foolish people who advocate bare backing sex are inviting infection. The non-infected public dismisses the health complaints of the HIV infected in the mistaken belief that HIV/AIDS is cured. Ill informed doctors do not listen to their patients who complain of cognitive decline.

It is my fondest wish that all people become aware of the long term effects of HIV infection and either avoid infection or receive care from well informed clinicians; and, that the non-infected public renews their compassion for those infected by HIV. I believe there is hope for the newly infected. Researchers across the globe are doing important work on the effects of long term HIV infection.

When I first visited Venice, I became lost looking for the Church of Santa Maria della Salute, where the miraculous Black Madonna is housed. Normally, the vaporetta lets you off at the Church, but on this day the Venetian fisherman were on strike in front of the Church and the vaporetti in sympathy with the strikers were not making that stop. My partner and I were let out at the next stop which is some distance from the Church.

Venetian streets do not follow a logical pattern and maps are nearly useless to find one's way. After two hours of wandering the back streets of Venice, we had given up on ever finding the Church when we chanced upon a door over which was written Anchiave Espero -- "There is Always Hope." We took the next right turn after that door and there were the steps leading up to the Church. Over the gates to Dante's hell are written the words "Abandon All Hope Who Enter Here". Even with all the bad news about long term HIV infection, we must continue to have hope if we are to continue to find our way.


  1. At 70 milliliters of blood per kilogram of weight, 70 * 82 * 75 = 431K
  2. David France, New York Magazine, November 1, 2009.

Read ScotCharles's blog, Life Is a River.