Side Effects, Opportunistic Infections & Coinfections in HIV-Positive People

Opportunistic diseases are actually an entire group of diseases. By definition, an opportunistic disease is a disease that will most often make you sick given the "opportunity" of a damaged or weakened immune system (weakened because of AIDS, various forms of cancer or other causes). Because these illnesses most often appear when the immune system is damaged, they are NOT usually associated with recent HIV infection but usually occur years after infection.

Generally speaking, if you are exposed to an opportunistic disease, and you have a fully-functioning immune system, these illnesses will cause few, if any symptoms. If any symptoms are seen at all, they tend to be mild and of short duration. This is because a healthy immune system is able to successfully fight off the disease, or keep it under control.

Some diseases (like tuberculosis) can occur in anyone, regardless of their immune status, but are much more likely to cause illness and complications in persons with damaged/weakened immune systems.

Let me take this opportunity to list for you the diseases that meet the U.S. Centers for Disease Control and Prevention (CDC) surveillance definition of AIDS, when seen with documented HIV infection. You probably have never heard of most of these (let alone, are able to even pronounce them!). This is because when most people are infected with these diseases, their bodies are able to fight off the illness, often without any symptoms. Many of these are diseases that you are exposed to all of the time. If your immune system is functioning properly, the illness is fought off, or is put under control. However, if a person has a damaged/weakened immune system (from various causes), these diseases can cause symptoms or serious disease.

The following are AIDS-defining diseases (in persons with documented HIV infection):

Burkitt's Lymphoma

Candidiasis in the bronchi, trachea, lungs, or esophagus

Cervical Cancer

Coccidioidomycosis (disseminated or outside the lungs)

Cryptococcosis (outside the lungs)

Cryptosporidiosis in the intestines lasting for more than 1 month

Cytomegalovirus [CMV] (outside the liver, spleen, or lymph nodes)

Cytomegalovirus retinitis [CMV] (with loss of vision) HIV encephalopathy

Herpes Simplex lesions lasting for more than one month

Herpes Simplex in the bronchi, lung, or esophagus

Histoplasmosis (disseminated or outside the lungs)

Immunoblastic lymphoma

Invasive cervical carcinoma (cancer)

Isosporiasis in the intestines lasting for more than one month

Kaposi's Sarcoma

Lymphoma (primary in the brain)

Mycobacterium avium complex [MAC] (disseminated or outside the lungs)

Mycobacterium kansasii (disseminated or outside the lungs)

Mycobacterium tuberculosis (TB)

Mycobacterium [other types] (disseminated or outside the lungs)

Pneumocystis carinii pneumonia

Pneumonia (recurrent in 12 month period)

Progressive multifocal leukoencephalopathy (PML)

Salmonella septicemia (recurrent)

Toxoplasmosis (in the brain)

Wasting syndrome

The following are other AIDS-defining conditions, in persons with documented HIV infection:

CD4 cell count less than 200

CD4 cell count less than 14%

The following are some medical conditions that MAY indicate a problem with the immune system, but are NOT AIDS defining:

Candidiasis in the mouth (thrush)

Oral Hairy Leukoplakia

Microspordium in the intestines lasting for more than one month

Other illnesses of unusual severity or duration.

Remember, ALL of these illnesses and conditions can also be found in people with other problems of the immune system, unrelated to HIV or AIDS. Therefore being diagnosed with any of these illnesses or conditions, by themselves, does NOT specifically indicate HIV infection or AIDS. ONLY a doctor can diagnose these illnesses and conditions. None of these diseases or conditions can be diagnosed by symptoms alone. All of these must be diagnosed by laboratory tests. If a person has one of these illnesses, but does not have HIV, they do not meet the CDC surveillance definition of AIDS. Remember, there are many other medical conditions that can also cause immune system problems.

Preventing Infections in the First Place

Some OIs can be prevented. For example, people who have never been exposed to herpes can practice safer sex to reduce their risk of getting genital herpes. If you're not infected with the herpes virus, then there's no worry of it becoming an OI or threatening to your health. Project Inform's publication, Sex and Prevention Concerns for Positive People, contains information on how you can prevent many of these infections.

You can reduce your risk of some infections by practicing safer sex. Others can be prevented with vaccines. Still others can be avoided by handling and preparing food more safely or by being aware of and avoiding (when possible) the things that cause disease. This might include not handling birds or cats, even those kept as pets. It may also include using gloves when changing cat litter boxes, or having someone else deal with the litter.

Recently, outbreaks of drug-resistant staph skin infections have occurred. This infection can be spread through casual contact. Because these organisms are resistant to drugs, treatment may require intravenous therapy. Some speculate that in urban areas staph infections may be spread through something as simple as sharing equipment at the gym. Doing something as simple as putting a towel on gym equipment before using it, and not using that towel to wipe sweat from your body, may help you prevent a staph infection.

Preventing exposure to organisms is a great way to reduce your risk of getting an OI. In some cases, however, the organisms that cause OIs are in your every day environment. You may not be able to avoid them, or you may have already been exposed to them.

People living with HIV should be screened for many OIs when they first find out they're HIV-positive, as part of their early lab screenings. In some cases, this allows people to know if they're already exposed to an organism and helps them learn how to prevent infections they don't already have. (For more information on these types of lab tests, call Project Inform's Infoline at 1-800-822-7422.)

However, in the case of Pneumocystis jiroveci pneumonia (also called PCP), it's simply not known how the organism is spread. It's assumed that most people are already infected with it. In that case, preventive treatment is routinely used if your immune system weakens and as the risk for PCP increases. PCP remains the leading cause of death of people with AIDS in the US and is largely preventable.

Treating Infections as They Occur

Because HIV replicates more as your immune system battles infections, treating them as they occur is critical not only in dealing with the infections, but also curbing further damage to the immune system by HIV. This is true whether or not the infection is an actual OI. When it comes to OIs, however, and many issues in later-stage HIV disease, diagnosing some infections can be difficult.

One of the biggest challenges in treating OIs is early diagnosis, before they're able to take hold in different organs like the lungs, colon, brain, bone marrow, etc. The earlier something is diagnosed and treated, the more likely treatment will be successful and result in full recovery. This means regular checkups by your doctor (at least every three months) and talking to him or her about your symptoms.

If you experience any new or unusual symptoms and are between doctor visits, make an appointment. Don't wait three months to have something looked at. Keep a health journal or diary, or merely write on a calendar when a new or unusual symptom occurs and record how long it remains. This may help your doctor figure out if a symptom is a drug side effect, a sign of an OI or something else.

Many OIs have the same symptoms, and some infections may be masking others. So, initial treatment may only deal with part of a problem, but not the whole problem. Dealing successfully with multiple infections may take diligence on your part when seeing many doctors and specialists. It's ideal to have your primary doctor take charge, talking with your other doctors to make sure they're talking to each other.

The hardest part of dealing with multiple conditions is that doctors often aren't very good about talking to each other. It can easily become a full time job juggling your appointments as your different doctors order many different lab tests. It's your primary doctor's job to manage all of this, even when he or she is busy. Especially when many problems occur together, preparing for your appointments, writing down your questions beforehand, and having someone like an advocate with you to record the answers is strongly encouraged.

Once a condition is diagnosed, completing your treatment is vital. Also, drugs that treat some OIs may interact with your HIV meds. Any time a new treatment is added to your regimen, it's wise for you and your doctor to assess whether it's safe to use with your other meds and make any necessary dose adjustments.

Preventive Treatment for OIs

OIs are generally not a problem for people whose CD4 cell counts remain stable above 200. It is extremely rare for people living with HIV to die of AIDS when their CD4 counts are above 200. However, as CD4 counts decline your risk for getting OIs increases.

Perhaps the best strategy for preventing OIs is to keep your CD4 counts above 200. Therefore, the Federal Guidelines for using HIV therapy recommend that people consider starting HIV therapy when their CD4 counts are 350 or below. They also strongly recommend treating anyone with symptoms of HIV disease (regardless of CD4 counts) and anyone with CD4 counts of 200 or below. This is because HIV therapy stops HIV from destroying immune cells, preventing the further decline of the immune system.

There are also Federal Guidelines for preventing and treating HIV-related OIs. A summary of these guidelines is available in Project Inform's publication, Opportunistic Infections Chart.

In general, if CD4 counts fall to 200 or below (or CD4 percentage below 14%), people are at increased risk for PCP. Preventive therapy is advised. For people with other symptoms of HIV infection, especially repeated fungal (candida) infections, PCP preventive therapy is often started when CD4 counts are higher, around 300. If CD4 counts fall to the 100-150 range, preventive therapy for toxoplasmosis is recommended for people who are positive for it. If CD4 counts fall to 50 or below, preventive therapy for MAC and CMV is advised. For people who suspect they've been exposed to tuberculosis, preventive therapy is warranted.

Maintenance Therapy

After treating an OI, it's sometimes necessary to take medications for life to prevent it from coming back. This is called maintenance therapy. In some cases, maintenance therapy may be stopped if a person's immune system recovers and sustains its control of HIV with the use of HIV therapy. The guidelines around starting and stopping maintenance therapy are outlined in Project Inform's publication, Opportunistic Infections Chart.

Some people with repeated herpes outbreaks will take long-term anti-herpes drugs to prevent them from coming back. Similarly, some people troubled with repeated fungal infections will take long-term anti-fungal drugs. However, in both cases maintenance therapy is somewhat controversial. This is because these organisms can develop resistance to the drugs, leaving few treatment options if or when a serious infection occurs.

When herpes or fungal infections continue to happen, it may come down to a quality of life issue. Long-term therapy may be the only viable option for a person. Carefully weighing the risks and benefits of these approaches is critical to making the right choice. Some will choose to risk losing viable treatment options to ease the problems of recurrent infections. Others will simply choose to treat these infections as they happen in hopes of preserving the benefits of therapy. Preventing OIs applies to people at all stages of HIV disease. It includes: -maintaining good immune health

-using HIV therapy properly to preserve the immune system and allow for its recovery

-preventing infections by the organisms that cause OIs when possible

-using treatments when needed to prevent OIs, and using treatments when needed to prevent OIs from coming back.

A plan for treating OIs includes:

-Seeing your doctor regularly. This generally means 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 treated people living with HIV is better able to recognize and treat OIs and should be more familiar with preventive therapy. Telling your doctor(s) about all the symptoms you have so they can diagnose problems early.

-Treating infections as they occur (aggressively), completing treatment and using maintenance therapy when needed. This may include the need for life-long maintenance therapy.

-List of AIDS-Defining OIs from the Centers for Disease Control Candidiasis (thrush) of the throat (esophagus, trachea) or lungs Fungal infection. Most people already have candida in their body. Generally the body keeps it under control. Sugars (including alcohol) are food for candida. There may be ways to adjust diet to help prevent candida from becoming problematic.

-Cervical cancer, invasive and/or recurrent Cancer/Viral infection. Often caused by human papilloma virus (HPV), the virus that causes anal and genital warts. Safer sex may help reduce the risk of HPV infection, but many women are infected with HPV even though they may have never had genital warts. Regular GYN exams are important for checking for cervical cancer.

-Coccidioidomycosis, outside the lungs and/or throughout the body Fungal infection. Found in soil in the southwestern U.S. Likely passed through the air or wind, in dust and dirt, but not from person to person. A fairly large outbreak followed the Northridge earthquake in southern California and was likely due to dirt and dust in the air. Most problematic in Kern and Tulare counties and San Joaquin Valley in California.

-Cryptococcosis, outside the lungs, fungal infection. Found in soil, associated with bird droppings in the soil. Likely passed through the air or wind, not person to person. Avoid handling birds, even as pets, and avoid areas with lots of bird droppings.

-Cryptosporidiosis with diarrhea that lasts longer than one month Parasite. Found in feces of many species; may contaminate drinking water. Prevent infection from humans by avoiding feces (diapers, sex with direct oral/anal contact). Often exposure from animals occurs from fecal contamination of water. Avoid drinking from rivers and streams. When appropriate, drink bottled water and or use filters on tap water that can filter out crypto.

-Cytomegalovirus (CMV) disease of an organ other than the liver, spleen or lymph nodes, including in the eye (CMV retinitis) Viral infection. Most (50-85%) people likely infected already. CMV is passed through close contact (sex, saliva, urine and other body fluids) and from mother to child (during pregnancy and breast-feeding). If not infected, safer sex may help prevent it.

-Herpes simplex virus (HSV) outbreak lasting over one month, or HSV infections in the lungs/throat

-Viral infection. Genital herpes is passed sexually. Safer sex can decrease risk of infection. Oral-to-genital spread of herpes possible.

-Histoplasmosis, outside the lungs and/or throughout the body Fungal infection. Found in soil in eastern and central US. Grows in soil contaminated with bat or bird droppings. Can pass through the air when contaminated soil is disturbed -- as in exploring caves. Not passed from person to person.

-HIV encephalopathy ("HIV dementia" or "AIDS dementia") Viral infection. Caused by HIV. Possibly preventable by using anti-HIV drugs that cross the blood-brain barrier.

-HIV wasting syndrome Viral infection. Caused by HIV, inflammation or as a result from OIs. Possibly preventable, to some degree, by improving nutrition.

-Isosporiasis with diarrhea that lasts more than one month Parasite. Found in feces, may contaminate food or drinking water. Most common in tropical and subtropical region of the U.S. Prevent infection from humans by avoiding feces (diapers, sex with direct oral/anal contact). Often exposure from animals occurs from fecal contamination of water. Avoid drinking from rivers and streams. When appropriate, drink bottled water or use filters on tap water. Cook food thoroughly.

-Kaposi's sarcoma (KS) Cancer/viral infection: Caused by human herpes virus 8 (HHV8 or KSHV). How it is passed is unknown, but believed to be passed through close sexual contact and from mother to child. Practicing safer sex may help avoid infection.

-Lymphoma of the brain Cancer. Unknown cause, but Epstein Barr Virus (EBV) may play role in risk for lymphoma.

-Lymphoma -- Burkitt or non-Burkitt type Cancer. Unknown cause.

-Lymphoma -- immunoblastic type Cancer. Unknown cause.

-Mycobacterium tuberculosis (TB) disease Bacterial infection. Passed through the air, can be passed from person to person by close contact, kissing or saliva. Transmission may occur very casually, especially in closed-in spaces like low income housing, shelters, jails or other places with close living quarters.

-Mycobacterium avium complex (MAC) or M. kansasii disease, outside the lungs and/or throughout the body Bacterial infection. Found everywhere in the environment -- soil, food and animals. Avoid handling soil, carefully handle and prepare food. Difficult, perhaps impossible, to prevent exposure as it's in so many places in the environment.

-Mycobacterium disease of unknown type, outside the lungs and/or throughout the body Bacterial infections. Likely found in soil, food and animals. May be difficult to prevent exposure.

-Pneumocystis jiroveci pneumonia (PCP) Likely caused by a fungus, Pneumocystis jiroveci, found in many places in the environment. Likely not preventable except with therapy when risk for OI increases.

-Pneumonia, recurrent Bacterial infections. Likely caused by blood exposure to bacteria. Most common in injection drug users. May be airborne and exposure may occur through casual contact/saliva.

-Progressive multifocal leukoencephalopathy (PML) Viral infection. Caused by the JC virus. Most people likely already infected. Causes disease in about 1% of people with HIV. Its cause in some but not in others is not well understood. Possibly passed through sexual contact, mother to child, etc.

-Salmonella septicemia, recurrent Parasite. Some forms likely passed through contaminated poultry (chicken, etc.). Also found in water, soil, kitchen surfaces, animal feces, raw eggs, raw meat (particularly chicken, pig and fish) and on certain animals (reptiles).

-Toxoplasmosis of the brain in people older than one month of age Parasite. Cats and birds are major sources of infection. Indoor cats less of risk, but toxo-negative cats that go outside can carry it back in. Cat feces should be avoided (use gloves to change litter). Avoid handling birds. Toxo also found in undercooked meats.