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HIV and the Brain

May 22, 2018

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Table of Contents


The brain is a very important organ. It controls every function in our bodies and allows us to think, see, feel, touch, hear, smell, and move. The brain and the spinal cord make up the central nervous system (CNS).

While we do not know exactly how it happens, scientists believe that HIV enters the central nervous system within the first few weeks or months after a person gets HIV. Afterwards, the virus can lie hidden and inactive in the brain for a long time. Research studies have recently shown that the earlier people start HIV medicines once they know they are living with HIV, the less likely brain cells are to be damaged.

Sometimes HIV can cause damage to cells in certain sections of the brain that can lead to mild cognitive or thinking problems, including difficulty concentrating, confusion, and memory loss. However, this generally does not happen unless a person has had HIV for a long time, has not been taking HIV medications, or has been living with a very high viral load. Over time, this can lead to more severe HIV-associated dementia. Dementia is a long-lasting condition that can include memory loss, problems with reasoning, and personality changes.

HIV-Associated Brain Problems

Mild cognitive problems are not uncommon in people living with HIV. HIV-associated neurocognitive disorder (HAND) is a term used to describe a group of conditions that include some combination of thinking, movement, mood, and/or behavior problems. HAND has several forms, ranging from mild to severe, and has a range of symptoms, including:

  • reduced ability to think clearly
  • difficulty remembering things
  • trouble performing eye-hand coordinated movements
  • changes in behavior or mood

These symptoms usually only occur in people who have had HIV for a long time, have not been taking HIV medications, or have been living with a very high viral load.

A more serious condition called HIV-associated dementia occurs less frequently, especially since newer HIV medications have become available. People who have a CD4 cell count below 200 are at risk of developing this condition - generally the lower the CD4 count, the greater the risk.

HIV-associated dementia refers to a mental and physical state in which a person cannot perform normal activities of daily living without assistance (e.g., counting money, taking medications, preparing meals). This condition can show up suddenly as a dramatic change in behavior, thinking, and movement or a milder neurocognitive condition can progress to dementia as the immune system gradually gets worse.

Diagnosing HIV-Associated Neurocognitive Disorder (HAND)

The initial signs of HAND can be very difficult to notice. If you are experiencing memory problems or your family and friends comment on changes in your behavior or coordination, it is a good idea to start keeping a log. Note any problems you are having with:

  • Balance or coordination
  • Vision
  • Memory
  • Concentration or attention
  • Completing tasks
  • Getting lost in familiar places
  • Forgetting telephone numbers
  • Simple math

It will be important to bring this log to discuss with your health care provider as soon as possible. Even if you feel there is an explanation for the problems, it is important to tell your provider.

If your health care provider believes you may have memory loss, he or she will likely refer you to a specialist such as a neurologist (a physician who specializes in the brain and nervous system), a psychiatrist (a physician who specializes in mental and emotional health), or a neuropsychologist (a professional who specializes in testing how the mind functions) for a complete exam. This will include "neurocognitive" testing (tests your memory and concentration, reasoning, coordination, and problem solving). These tests can detect small changes in your cognitive ability and provide important information.

You may also need to have a test called a lumbar puncture (also known as a spinal tap) to obtain a sample of cerebrospinal fluid. A needle is inserted between the bones of the spine and a small amount of fluid is removed. Lumbar punctures are done with local pain medication so there is not a great deal of pain. Many people avoid getting this procedure because it sounds frightening, but the information gained can be very helpful in making a diagnosis and selecting treatments. 

Often, diagnosing HAND is a process that involves making sure your problems with memory or thinking are not the result of other, more common causes. There are many factors other than HIV that can cause mental function changes. Based on your test results, your provider can identify certain conditions or problems that may be causing these changes, such as depression or other psychological problems, tumors, excessive fluid in the brain, or injury to the brain.

People living with HIV who have a weak immune system may also be at risk for opportunistic infections of the central nervous system such as:

  • Neurosyphilis (syphilis in the brain)
  • Cryptococcal meningitis
  • Tuberculosis (TB)
  • Toxoplasmosis (Toxo)
  • Cytomegalovirus (CMV)
  • Primary CNS lymphoma
  • Progressive Multifocal Leukoencephalopathy (PML)

Some of these conditions may be treatable with drugs, or other medical interventions. If these conditions are found not to be the cause of your symptoms, your health care provider may conclude that you are experiencing a form of HAND.

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This article was provided by The Well Project. Visit The Well Project's Web site to learn more about their resources and initiatives for women living with HIV. The Well Project shares its content with to ensure all people have access to the highest quality treatment information available. The Well Project receives no advertising revenue from or the advertisers on this site. No advertiser on this site has any editorial input into The Well Project's content.

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