So, What Exactly is NeuroHIV?
NeuroHIV is a general term for problems with the nervous system that people may experience when they live with HIV. NeuroHIV can affect different parts of the nervous system – the brain, the spinal cord, and/or the nerves in your body.
What are the Symptoms of NeuroHIV?
The most common types of NeuroHIV are:
a) Neuropathy, which often involves pain in the feet or hands due to nerve damage
b) HIV-Associated Neurocognitive Disorders (HAND), which involve problems with memory and thinking because of HIV in the brain
Symptoms include:
1. Difficulties with sensation, like pain, numbness, or vision problems
2. Difficulties with movement, like weakness, moving slowly, or problems with coordination
3. Difficulties with memory, thinking, concentrating, and processing information
4. Difficulties with emotions, like depression, anxiety, or apathy (which means feeling “flat” or uninterested)
NeuroHIV is an umbrella term that includes various problems and conditions, so not everyone with NeuroHIV experiences all these symptoms. Some people may have difficulty with memory, while others may have problems with pain.
People living with HIV may also experience encephalitis and meningitis, which are acute, serious conditions involving infections or inflammation in the brain and spinal cord. These are rare, especially when HIV is well treated.
What Causes NeuroHIV?
NeuroHIV has multiple causes that vary from person to person. They can include:
The HIV virus itself: HIV can enter the brain and damage brain cells and nerves by releasing toxins.
Inflammation: The body’s immune system helps protect the brain and body by fighting HIV. However, when the immune system is fighting a virus for a long time, it causes inflammation that can have negative effects on the nervous system and other parts of the body.
Opportunistic infections: When the immune system is weakened by HIV infection, infections that the body would usually be able to fight have a greater impact on the body. Some of the most common opportunistic infections that affect the nervous system in people living with HIV are cryptococcal meningitis, cerebral toxoplasmosis, and tuberculous meningitis.
Medications: Medications to treat HIV (also known as antiretroviral medications or ART) are the best way to prevent NeuroHIV. However, some HIV treatments can have side effects on the brain and nervous system. Medications used in the United States today are less likely to have these side effects than medications used in the early years of the HIV pandemic. It is important to know that the risk of NeuroHIV is higher in people who do not take HIV medications than in people who do.
Who is at Risk for NeuroHIV?
About half of people living with HIV experience NeuroHIV. Some things that increase your risk of NeuroHIV include:
Not taking HIV medications regularly
Having detectable viral loads, meaning that the HIV virus is actively replicating or making new copies of itself
Having low numbers of CD4 cells (also called T-cells, T-lymphocytes, or helper cells), which means the immune system is not functioning as well as it should.
NeuroHIV does occur in people with undetectable viral loads and good CD4 counts, but it tends to be milder.
People who have other risk factors for nervous system problems are also at higher risk of NeuroHIV. This includes older adults, people who use drugs, and people with diabetes or cardiovascular conditions like high blood pressure.
How can I Prevent NeuroHIV?
The best ways to prevent NeuroHIV are the same as the best ways to prevent and treat HIV: using condoms, pre-exposure prophylaxis (PrEP), post-exposure prophylaxis (PEP), adhering to ART if infected, and always using clean syringes and medical equipment. The same goes for protecting yourself if your partner develops NeuroHIV.
Whether or not you are living with HIV, great ways to support brain health in general include eating a healthy diet (such as the Mediterranean diet), getting good sleep, exercising regularly, and staying mentally and socially active.
What Should I Do if I am Worried I Might Have NeuroHIV?
If you are living with HIV and have concerns about nervous system difficulties–
Talk with your health care providers, they may refer you to a neurologist who can further assess and treat your difficulties, or a neuropsychologist who can assess memory and thinking problems in detail and offer recommendations.
Seek care with a mental health professional such as a psychiatrist, psychologist, or therapist who can help manage depression and other mental health concerns.
A social worker or case manager can help connect you with various resources to manage NeuroHIV.
Depending on your symptoms, treatment for NeuroHIV might include:
- Getting and staying engaged in HIV care and taking ART regularly
- Medications to manage symptoms, infections, other health conditions, and mental health challenges
- Cognitive rehabilitation to learn strategies to manage memory and thinking problems
- Physical therapy (PT) or occupational therapy (OT) to support day-to-day functioning
- Psychotherapy to support mental health
References
1. Hogan, C., & Wilkins, E. (2011). Neurological complications in HIV. Clinical Medicine, 11(6), 571–575. https://doi.org/10.7861/clinmedicine.11-6-571
2. U.S. Department of Health and Human Services. (2023, January 31). AIDS and HIV, neurological complications of. National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/health-information/disorders/aids-and-hiv-neurological-complications
3. University of Rochester Medical Center. (n.d.). Nervous system effects of HIV. Health Encyclopedia. https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=134&contentid=46