Strategies for Managing Opportunistic Infections
HIV (human immunodeficiency virus) infects the cells of the body’s immune system and then impairs their function until it eventually manages to destroy them over time. This gradually weakens the person’s immune system until it loses its ability to fight disease.
Although HIV is the cause, most people who die from AIDS do not die from HIV per se but rather from the infections that the body can no longer control due to the weakened immune system. Some fairly common infections, which would cause little or no damage in a healthy person, take advantage of a weakened immune system to cause serious life-threatening diseases. This is why they are called opportunistic infections (OI).
Managing opportunistic infections must form part of the long-term plan for managing HIV disease.
Opportunistic infections and HIV disease
The Centers for Disease Control (CDC) have developed a list of serious diseases that are life-threatening known as “AIDS-defining opportunistic infections". (AIDS is the acronym for Acquired Immune Deficiency Syndrome.) So when a person has an AIDS-defining infection, the person is then diagnosed with having AIDS. Another way of diagnosing AIDS is when tests that measure the immune function show that you are at a serious risk of developing these infections. Examples of this include CD4+ cell counts below 200 or a CD4+ percentage below 14%.
Opportunistic infections can be very common, such as genital herpes, but not everyone with HIV who has a herpes outbreak is presumed to have AIDS. To the contrary, herpes only becomes an opportunistic infection when it takes advantage of a weakened immune system to become more aggressive, persistent and harder to treat. So having HIV and genital herpes simultaneously is not automatically considered to mean AIDS but having HIV and herpes outbreaks that persist for a month despite treatment may be.
It is important to note that almost any condition or disease can become opportunistic due to a weakened immune system. This is also true for people with cancer and other health problems. However, in order for an opportunistic infection to become the cause of an AIDS diagnosis, it must appear on the CDC’s list as one of the AIDS-defining infections for people who are HIV-positive.
However, it is possible for people with HIV to have conditions that do not appear on the CDC’s list. Occasionally, the CDC revises its list to include these new conditions. For example, hepatitis C (HCV) is not currently on the list of AIDS-defining infections but more and more data are showing that people with HIV are at a high risk of getting more serious liver disease due to HCV. The first line of defense for many of these conditions is prevention.
Preventing infections in the first place
Some opportunistic infections can be prevented. For example, people who have never been exposed to herpes can practice safe sex to reduce the risk of getting genital herpes. If you are not infected with the herpes virus, then there is no worry of it becoming an opportunistic infection or threatening your health. Project Inform’s publication “Sex and prevention concerns for positive people” contains information on how many of these infections can be prevented.
You can reduce your risk of getting many OIs by practicing safe sex. Others can be prevented with vaccinations. Still others can be avoided by safely handling and preparing food or by trying to avoid (whenever possible) things that could cause diseases. This may include not handling cats and birds, even if they are kept as pets. It may also include using gloves when changing cat litter boxes or asking someone else to do this.
Recently, outbreaks of drug-resistant staphylococcus skin infections have appeared. These infections can be spread through casual contact. Since these microbes are drug-resistant, treatment may require intravenous therapy. Some speculate that in urban areas staphylococcus infections may be spread through actions that are as simple as sharing equipment at the gym.
Preventing exposure to microbes is a great way of reducing the risk of getting an OI. However, in some cases, the microbes that cause OIs are in your everyday environment. It is possible that you will not be able to avoid them or that you have already been exposed to them.
People living with HIV must be tested to detect possible opportunistic infections as soon as they find out they are HIV-positive. In some cases, this allows people to know if they have already been exposed to certain microbes and it helps them to find out how to prevent them if they have not yet been exposed. (For more information on this type of lab tests, call Project Inform’s toll-free helpline on 1-800-822-7422.)
However, in the case of Pneumocystis jiroveci pneumonia (also known as PCP), it is simply not known how the microbe is spread. It is assumed that most people are already infected with it. In that case, preventive treatment is used as the immune system gets weaker and the risk for PCP increases. PCP is still the main cause of death among people with AIDS in the United States although there are well-documented ways of preventing it.
Treating infections as they appear
Project Inform’s “Opportunistic Infections Chart” summarizes the General Guidelines for treating most OIs. Since HIV replicates faster when the immune system is fighting infections, treating them as they appear is very important, not only to deal with the infection itself but also to prevent the HIV from doing more damage to the immune system. This is true whether the disease is an OI or not. However, with regard to OIs and many other problems in later-stages of HIV disease, it is very hard to diagnose some of these infections.
One of the main challenges in treating OIs is early diagnosis, before they can affect several organs such as the lungs, colon, brain, bone marrow, etc. The earlier something is diagnosed and treated, the greater the chance that treatment will be successful and result in total recovery. This implies regular checkups (at least every three months) and reporting all symptoms in detail.
If you experience new or unusual symptoms between appointments, make another appointment. Do not wait three months to get it checked out. Keep a health diary or record, or simply write on a calendar when a new or unusual symptom occurs and keep a note of how long it lasts. This could help your doctor decide whether a symptom is the side effect of a drug, the sign of an opportunistic infection or something else.
Many opportunistic infections have the same symptoms and some infections may disguise others. Therefore initial treatment may only resolve part of a problem and not the whole problem. Dealing successfully with multiple infections may require diligence on your part when seeing many doctors and specialists. The best thing is to have your primary doctor take charge and talk to the other doctors to make sure they are all communicating with each other.
The hardest part of dealing with multiple conditions is that sometimes doctors are not very good at communicating. Managing all your appointments can easily turn into a fulltime job as each doctor may order different lab tests. Your primary doctor is responsible for managing all this even when he/she is very busy. It is highly advisable to prepare your appointments, write down any questions you have in advance and have someone, such as a patient advocate, to record any answers, especially when many problems arise simultaneously.
Once you have been diagnosed with a condition, it is vitally important that you complete your treatment. Also, drugs used to treat some OIs may interact with your anti-HIV drugs. Every time a treatment is added to your regimen, it is a good idea for you and your doctor to evaluate whether it is safe to use it with your other drugs and whether certain dose adjustments should be made.
Preventive treatments for OIs
OIs are generally not a problem for people whose CD4+ counts remain above 200. It is extremely rare for a person with HIV to die of AIDS when his/her CD4+ count is above 200. However, as these counts fall, the risk of getting opportunistic infections increases.
Maybe the best strategy for preventing OIs is to keep CD4+ cell counts above 200. Therefore, the General Guidelines for the use of anti-HIV therapies recommend that people consider starting anti-HIV therapy when their CD4+ cell counts are 350 or less. They also strongly recommend treating any of the symptoms of HIV disease (regardless of the CD4+ cell count) and immediately starting therapy when the count is 200 or less. This is due to the fact that anti-HIV therapy stops the virus from further destroying immune cells, thereby preventing further deterioration of the immune system.
There are also General Guidelines for preventing and treating HIV-related OIs.
In general, if CD4+ cell counts fall below 200 (or the CD4+ percentage is lower than 14%), people are at a greater risk from PCP and starting preventive therapy is advised. For people with other symptoms of HIV infection, especially recurring fungal infections (candidiasis), preventive therapy against PCP is started before, at around 300 CD4+. If CD4+ cell counts fall between 100 and 150, preventive therapy against toxoplasmosis is recommended for people testing positive for this condition. If CD4+ cell counts fall to 50 or below, preventive therapy against MAC and CMV is recommended. For people who suspect they have been exposed to tuberculosis, preventive therapy is also suggested.
Maintenance therapy
After treating an OI, it is sometimes necessary to take medications for life to prevent recurrence. This is called maintenance therapy. In some cases, maintenance therapy can be suspended if the person’s immune system recovers and sustains its control of HIV with the use of anti-HIV therapy.
Some people with recurring herpes outbreaks will take respective therapies to control their reappearance. Similarly, some people affected by repeated fungal infections will take long-term anti-mycotic drugs. However, in both cases, maintenance therapy could be controversial as these microbes can develop drug resistance, leaving very few treatment options if a serious infection occurs.
When herpes or fungal infections continue to occur, this may turn into a quality of life problem. Long-term therapy may therefore be the only viable option for the person. It is vital to carefully weigh up the risks and benefits of these approaches in order to choose the best option. Some will choose to risk losing viable treatment options to resolve the problem of recurrent infections while others will simply choose to treat these infections as they occur with the hope of preserving the benefits of the therapy.
A few final words about strategies for managing opportunistic infections
Regardless of where you are at in the spectrum of HIV disease, there are things you can do to prevent and treat opportunistic infections. Preventing OIs is advised for people at all stages of HIV disease. This includes:
- maintaining good immune health,
- correctly using anti-HIV therapy to preserve the immune system and allow it to recover,
- preventing infections by microbes that cause OIs, whenever possible,
- using therapies when necessary to prevent OIs, and
- using treatments when necessary to prevent OIs from reoccurring.
A plan for treating OIs includes:
- Seeing your doctor regularly. This is generally every three months; or twice a year for people with good immune health; or monthly for people dealing with complications. A doctor experienced in HIV disease who has already treated people living with HIV is better able to recognize and treat an OI and should be more familiar with preventive therapy.
- Informing your doctor(s) of the symptoms you have so problems can be diagnosed early.
- (Aggressively) treating infections as they occur, completing treatment and using maintenance therapies when necessary.
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