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Just Diagnosed

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Your next steps

Finding out that you have HIV can be scary and overwhelming. If you feel overwhelmed, try to remember that you can get help and that these feelings will get better with time.

There are some things that you should know about HIV that may ease some of the stress or confusion you are feeling.

Remember:



  • You are not alone. Many people are living with HIV, even if you don't know that they are.
  • HIV does not equal death: Having HIV does not mean that you are going to die of it.
  • A diagnosis of HIV does not automatically mean that you have AIDS.
  • Don't freeze: Learning how to live with HIV and getting in touch with a health care team that knows how to manage HIV will help you to feel better and get on with your life.

Testing positive for HIV is a serious matter but one that you can deal with. This guide will take you through the steps you need to take to protect your health.

Understand your diagnosis

When your doctor tells you that you are HIV positive, it means that you have been infected with the Human Immunodeficiency Virus (HIV). The HIV test does not tell you if you have AIDS or how long you have been infected or how sick you might be.

Soon after your diagnosis, your doctor will run other tests to determine your overall health, and the condition of your immune system. For descriptions of these tests, go to "Understanding Laboratory Tests."

Learn about HIV and AIDS

The more you know about HIV and how to treat it, the less confused and anxious you will be about your diagnosis. The more you learn, the better you will be at making decisions about your health. You don't have to learn it all at once, however. It is important to go at a pace you are comforatble with. This may be fast, slow, or in-between. You may want to go over the same information several times.

There are many ways to learn about HIV and AIDS:

  1. Start with the Basics (http://www.hiv.va.gov/basics-00-00) section of this site and read through all the sections.

  2. Check out government or nonprofit educational organizations that deal with HIV and AIDS issues. You can find a list of them on the Resources (http://www.hiv.va.gov/diag-resources) page at the end of this section.

  3. Use your local library: The most current information will be in the library's collection of newspapers and magazines (books about HIV and AIDS may be out of date by the time they are published).

  4. Check with your local VA medical center to see if there's an on-site library where you can find patient materials on HIV and AIDS.

  5. Talk with others who have been diagnosed with HIV and AIDS. Ask your doctors if they know of any support groups. Or you can go online, where you can find message boards and chat rooms. Always discuss what you learn from these sources with your doctor. The information may not be accurate; and even if it is, it may not be right for your particular situation.

Find support

Finding support means finding people who are willing to help you through the emotional and physical issues you are going to face. If you let the right people in your life know that you are HIV positive, they can:

  • offer you support and understanding;
  • provide you with assistance, such as running errands and helping with child care, doctor visits, and work;
  • learn from you how HIV is spread and work with you to prevent the virus from spreading.

Telling others

Deciding to tell others that you are HIV positive is an important personal choice. It can make a big difference in how you cope with the disease. It can also affect your relationships with people.

If you decide to share information about your diagnosis, it is best to tell people you trust or people who are directly affected. These include:

  • family members;
  • people you spend a lot of time with, such as good friends;
  • all your health care providers, such as doctors, nurses, and dentists.

You don't have to tell everyone about your HIV status right away. You might want to talk with a counselor or social worker first.

Join a support group

Some VA Medical Centers have a support group for veterans with HIV, so you may want to ask your provider if your center has one that you can join for support and for more information about living with HIV.

Joining a group of people who are facing the same challenges you are facing can have important benefits. These include feeling better about yourself, finding a new life focus, making new friendships, improving your mood, and better understanding your needs and those of your family. People in support groups often help each other deal with common experiences associated with being HIV positive.

Support groups are especially helpful if you live alone or don't have family and friends nearby.

There are different types of support groups, from hotlines to face-to-face encounter groups. Here are descriptions of some of the most popular types, and suggestions about how to find them.

HOTLINES

Find a hotline in your area by talking to a VA social worker in your hospital. Or look in the telephone book, in the yellow pages under "Social Service Organizations." Ask the hotline to "match" you with another person with a history like yours. He or she can give you practical advice and emotional support over the telephone.

PROFESSIONAL HELP

Veterans with HIV can get referrals to mental health professionals, such as psychologists, nurse therapists, clinical social workers, or psychiatrists. You also will likely have a social worker who is part of the HIV clinic where you will receive care. You can also get help for drug abuse.

Finally, the VA has Vet Centers, or Veteran Readjustment Centers, that specialize in supporting veterans with post-traumatic stress disorder. Many of these centers provide help to veterans with HIV.

SELF-HELP ORGANIZATIONS

Self-help groups enable people to share experiences and pool their knowledge to help each other and themselves. They are run by members, not by professionals (though professionals are involved). Because members face similar challenges, they feel an instant sense of community. These groups are volunteer, nonprofit organizations, with no fees (though sometimes there are small dues).

Work with your doctor

HIV is the virus that causes AIDS. If ignored, it can lead to illness and death. This is why it is so important to get medical care if you find out you have HIV. Do not be afraid to seek a doctor or nurse practitioner with experience in treating HIV-infected patients--he or she can help you to stay well. Most VA doctors who treat HIV are specialists in infectious disease. They work with a team of other health professionals who focus on HIV as a chronic, or lifelong, disease.

Treatments for HIV are not perfect (no medicine is), but can be very effective for many people. A doctor or other health care provider can explain the best options for you.

If you work with your health care provider in planning your care, you can deal with the disease in a way that is best for you.

Before appointments

Start with a list or notebook. Prepare for your appointment with your doctor by writing down:

  1. any questions that you have (print out questions to ask your doctor (http://www.hiv.va.gov/diag-questions) and take it to your appointment)

  2. any symptoms or problems you want to tell the doctor about (include symptoms such as poor sleep, trouble concentrating, feeling tired)

  3. a list of the medications that you are taking (include herbs and vitamins)

  4. upcoming tests or new information you've heard about

  5. changes in your living situation, such as a job change

That way you won't forget anything during the appointment.

You may want to ask a friend or family member to come with you and take notes. It can be difficult for you to take notes and pay attention to what your doctor is saying at the same time.

During appointments

Go over your lab work, and keep track of your results. If your doctor wants you to have some medical tests, make sure you understand what the test is for and what your doctor will do with the results. If you don't understand what your doctor is saying, ask the doctor to explain it in everyday terms.

If you feel your doctor has forgotten something during the appointment, it is better to ask about it than to leave wondering whether something was supposed to happen that didn't. It's your right to ask questions of your doctor. You also have a legal right to see your medical records. After all, it's your body.

Be honest. Your doctor isn't there to judge you, but to make decisions based on your particular circumstances. Tell your doctor about your sexual or drug use history. These behaviors can put you at risk of getting other sexually transmitted diseases as well as hepatitis. If your body is fighting off these other diseases, it will not be able to fight off HIV as effectively. You may get sicker, faster.

If you have sex with someone of the same sex or someone other than your spouse, it's OK to tell your doctor. The VA is not the military. It does not have a "don't ask, don't tell" policy. You cannot get kicked out of the VA or lose your benefits if you have sex with someone of your same sex , or someone other than your spouse.

Monitor your health

Once you have been diagnosed with HIV, you need to pay closer attention to your health than you did before.

You can keep track of your immune system in two ways. First, have regular lab tests done. Lab tests often can show signs of illness before you have any noticeable symptoms.

Second, listen to what your body is telling you, and be on the alert for signs that something isn't right. Note any change in your health--good or bad. And don't be afraid to call a doctor.

Have regular lab tests

Your doctor will use laboratory tests to check your health. Some of these tests will be done soon after you learn you are HIV positive.

The lab tests look at several things:

  • how well your immune system is functioning
  • how rapidly HIV is progressing
  • certain basic body functions (tests look at your kidneys, liver, cholesterol, and blood cells)
  • whether you have other diseases that are associated with HIV

For your first few doctor visits, be prepared to have a lot of blood drawn. Don't worry. You are not going to have so much blood drawn at every appointment.

For information on specific tests, go to the Understanding Laboratory Tests (http://www.hiv.va.gov/diag-02-00) page in this section.

Be aware of possible complications

Certain changes can happen to HIV-positive people who are living longer and taking HIV medicines. Some people have experienced visible changes in body shape and appearance. Sometimes these changes can raise the risk of heart disease and diabetes.

Also, by weakening your immune system, HIV can leave you vulnerable to certain cancers and infections. These infections are called "opportunistic" because they take the opportunity to attack you when your immune system is weak.

Know when to call a doctor

You don't need to panic every time you have a headache or get a runny nose. But if a symptom is concerning you or is not going away, it is always best to have a doctor check it out even if it doesn't feel like a big deal. The earlier you see a doctor when you have unusual symptoms, the better off you are likely to be.

The following symptoms may or may not be serious, but don't wait until your next appointment before calling a doctor if you are experiencing them.



Breathing problems:

  • persistent cough
  • wheezing or noisy breathing
  • sharp pain when breathing
  • difficulty catching your breath

Skin problems:

  • Appearance of brownish, purple or pink blotches on the skin
  • Onset of rash--especially important if you are taking medication

Eye or vision problems:

  • blurring, wavy lines, sudden blind spots
  • eye pain
  • sensitivity to light

Aches and pains:

  • numbness, tingling, or pain in hands and feet
  • headache, especially when accompanied by a fever
  • stiffness in neck
  • severe or persistent cough
  • persistent cramps
  • pain in lower abdomen, often during sex (women in particular)

Other symptoms:

  • mental changes--confusion, disorientation, loss of memory or balance
  • appearance of swollen lymph nodes, especially when larger on one side of the body
  • diarrhea--when severe, accompanied by fever, or lasting more than 3 days
  • weight loss
  • high or persistent fever
  • fatigue
  • frequent urination

Protect others

Once you have HIV, you can give the virus to others by having unprotected sex or by sharing needles (or, if you are pregnant or have an infant, during pregnancy, childbirth, or by breast-feeding). This is true even if you are feeling perfectly fine. Using condoms and clean needles can prevent infecting other people. It can also protect you from getting other sexually transmitted diseases.

Sometimes it can be difficult to explain that you have HIV to people you have had sex with or shared needles with in the past. However, it is important that they know so that they can decide whether to get tested. If you need help telling people that you may have exposed them to HIV, most city or county health departments will tell them for you, without using your name. Ask your doctor about this service.

Before telling your partner that you have HIV, take some time alone to think about how you want to bring up the subject.

  • Decide when and where would be the best time and place to have a conversation. Choose a time when you expect that you will both be comfortable, rested, and as relaxed as possible.
  • Think about how your partner may react to stressful situations. If there is a history of violence in your relationship, consider your safety first and plan the situation with a case manager or counselor.

Know when to consider treatment

Whether or not to start treatment for HIV is a decision that each person must make with his or her doctor. While anti-HIV drugs (also known as antiretrovirals) can be lifesavers, there are good reasons to delay taking them right away.

In general, you and your doctor will need to consider:

  • how well you feel
  • how healthy your immune system is (this is usually measured by your CD4 count)
  • whether or not you have AIDS
  • whether you can stick to a treatment plan

For details, see Treatment Decisions. (http://www.hiv.va.gov/treat-00-00)

Move forward with your life

Life does not end with a diagnosis of HIV. In fact, with proper treatment, people with HIV can live very healthy lives. Taking care of your overall health can help you deal with HIV:

  • Get regular medical and dental checkups
  • Eat a healthy diet
  • Exercise regularly
  • Avoid smoking and recreational drug use
  • Go easy on alcohol
  • Practice safer sex (it can protect others from getting HIV, and can protect you from other sexually transmitted diseases)

Understanding lab tests

Laboratory tests can help keep tabs on your health. Some of these tests will be done soon after you learn you are HIV positive. Then depending on your immune status, whether you are on medication or not, and a variety of other factors, your provider will set up a schedule for you.

The lab tests look at:

  • how well your immune system is functioning (CD4 count)
  • how rapidly HIV is progressing (viral load)
  • how well your body is functioning (tests look at your kidneys, liver, cholesterol, and blood cells)
  • whether you have other diseases that are associated with HIV (tests for certain infections)

When done shortly after you find out you have HIV, these tests establish a starting point or "baseline." Future tests will let you know how far from this baseline you have moved. This can help you tell how fast or slow the disease is moving and indicate whether treatments are working.

Most labs include a "normal" range (high and low values) when they report test results. The most important results are the ones that fall outside these normal ranges. Test results often go up and down over time so don't worry about small changes. Instead look for overall trends.

What follows are descriptions of the most common tests.

CD4 count (or T-cell test)

The CD4 count is like a snapshot of how well your immune system is functioning. CD4 cells (also known as CD4+ T cells) are white blood cells that fight infection. The more you have, the better. These are the cells that HIV kills. As HIV infection progresses, the number of these cells declines. When the CD4 count drops below 200 due to advanced HIV disease, a person is diagnosed with AIDS. A normal range for CD4 cells is between 600 and 1,500.

The higher your CD4 count, the better.

The same test that measures your CD4 count usually includes a CD8 cell count, too. CD8 cells (also known as CD8+ T cells) are another type of white blood cell that seek out and destroy cells infected with viruses, including HIV-infected cells.

Viral load (or 'HIV RNA')

Viral load tests measure the amount of HIV in the blood. Lower levels are better than higher levels. The main goal of HIV drugs is to reduce viral load as much as possible for as long as possible. Some viral load tests measure down to 400 or 500 copies of HIV per unit of blood; others go as low as 50 or even 25 copies. High levels--from 30,000 (in women) to 60,000 (in men) and above--are linked to faster disease progression. Levels below 50 offer the best outcome for your health.

The lower your viral load, the better.

CD4 counts and viral load tests are usually done every 3 months. Results can help you and your doctor decide when it's time to start taking anti-HIV drugs (see more on this in Treatment Decisions (http://www.hiv.va.gov/treat-00-00) ).

Resistance test

This test determines whether the particular virus in your body is resistant to anti-HIV medications. This test used to be done later in the course of HIV disease, but now many doctors are doing the test before HIV treatment is started.

HIV reproduces rapidly and, as the virus makes copies of itself, little changes (or mutations) sometimes result. These changes can lead to different HIV strains. A person can have many strains in his or her body.

If a strain that is resistant to your HIV drugs develops, the virus will be able to grow even though you are on medication. Your viral load will start to rise. The resistant virus soon will become the most common strain in your body.

Complete blood count (CBC)

This test looks at the different cells in your blood, including red blood cells, platelets, and white blood cells.

  • Red blood cells carry oxygen to other cells in your body. If the level of your red blood cells is too low, you have anemia. Anemia can lead to fatigue. Tests looking at your red blood cells include red blood cell count, hemoglobin, and hematocrit. Hematocrit refers to the percentage of your blood that consists of red blood cells. A normal hematocrit is 37-47% in females and 40-54% in males.
  • Platelets help with clotting, so if your platelets fall too low, your blood may not clot well. You may bleed more than usual, for example, when you brush your teeth or shave your skin. As the platelet count falls, the chance of internal bleeding rises.
  • White blood cells come in many types, and all are involved in your immune system's effort to keep you healthy. High white blood cell counts may indicate that you are fighting an infection. Low counts may put you at risk of getting an infection.

These tests are usually done every 6 to 12 months, unless your lab values are fluctuating a lot, or you have symptoms of HIV disease. Then the tests are done more often, every 3 to 6 months.

Blood chemistry tests

Chemistry tests examine the levels of different elements and waste products in the blood and help determine how well different organs are functioning. Usually, the tests are divided into two panels:

  • Electrolyte tests (sometimes called "lytes")--These tests help measure how well your kidneys are working, and measure the balance of fluids, acids, and sugar in your body. They include tests for sodium, potassium, chloride, magnesium, blood urea nitrogen (BUN), creatinine, and glucose.
  • Liver function tests (LFTs)--These tests measure whether your liver is being damaged. (Things that can damage the liver are viral hepatitis, alcohol, medications, and street drugs.) These tests measure alkaline phosphatase, ALT, AST, albumin, and bilirubin. It is important to have a baseline measure of your liver health, because you may need to take HIV medications in the future, and some of these medications can cause liver damage.

Blood chemistry tests are usually done a couple of times a year.

Fasting lipid profile

The level of certain fatty substances in the blood can give clues to your risk of heart disease. Triglycerides and cholesterol are important for health, but too much of them in the blood can cause fatty deposits to form in the arteries. This increases the chances of a heart attack. Too much triglyceride can also lead to pancreatitis, a serious inflammation of the pancreas. High cholesterol and high triglycerides can occur in people living with HIV for many years. They can also be a side effect of HIV medications.

Cholesterol is measured by three different tests:

  • total cholesterol
  • HDL (high-density lipoprotein), often referred to as "good" cholesterol because high levels lower your risk of heart disease
  • LDL (low-density lipoprotein), often referred to as "bad" cholesterol because high levels raise your risk of heart disease

These tests are usually done at least once a year, and more often if you require medication to control triglyceride and cholesterol levels.

TB test (or 'PPD')

TB is short for tuberculosis, a lung disease that people with HIV are at high risk for getting. A PPD test is a special skin test to see if you have been exposed to TB. In some people with HIV, the PPD test is not reliable and a chest X ray or sputum culture is done instead.

STD screening

If you got infected with HIV from unprotected sex, there is a chance you may have become infected with other sexually transmitted diseases, too. These include gonorrhea, syphilis, and chlamydia.

The bacteria that cause these diseases can be found in the throat, penis, vagina, and rectum. The bacteria that cause syphilis and gonorrhea can also spread through the blood to other parts of your body. Having one of these other diseases can make your HIV advance faster. They can also make you 2 to 5 times more likely to pass HIV along to your sexual partner. Syphilis, for example, can cause open sores on your genitals, which allows easy passage of HIV from you to your partner.

Hepatitis A, B, and C

Your liver is an organ that processes almost everything you put into your body, including drugs. The three most common types of viral hepatitis (A, B, and C) can damage your liver.

Some of the same behaviors that put people at risk for HIV (unprotected sex, injection drug use) can put them at risk for hepatitis.

If you have both HIV and hepatitis B or C, your treatments for either disease can be affected. If you have HIV, your hepatitis may progress faster. If your liver is damaged from hepatitis, it may be harder for your body to process your HIV medications.

What's more, some HIV treatments can damage your liver, so if you have hepatitis, your doctor may want you to try other treatments.

Body shape changes

People who are taking HIV medicines and living longer sometimes experience visible changes in body shape and appearance. A buildup of fat is called lipoaccumulation ("lipo" means fat). A loss of fat is called lipoatrophy.

Possible changes in body appearance:



  • increased fat in the abdomen
  • increased fat in neck, shoulders, breasts, or face
  • fatty bumps on the body
  • loss of fat in the face, legs, or arms

Types of fat

Lipodystrophy involves two types of fat in the body. One type, called visceral fat, lines internal organs. Too much visceral fat can put a person at risk of a heart attack, stroke, or diabetes.

The other type, called subcutaneous fat, is right under the skin. Too much subcutaneous fat is not life threatening but can have serious effects on the way people see themselves. It can lead to depression, anxiety, and low self-esteem.

Fat gain in the belly

A person may gain a large amount of visceral fat around the organs in their belly. This causes the abdomen to look swollen and feel hard. (If the abdomen is soft or doughy, it probably has nothing to do with HIV or its treatment.)

Gain in visceral fat can prevent organs from working properly. This can affect how sugar and fats are processed in the body. Some people also show an increased amount of fat (called lipids) in their blood, particularly cholesterol and triglycerides. Increased cholesterol can raise the risk of a heart attack or stroke. Increased triglycerides can raise the risk of damage to the pancreas.

Blood sugar levels may go up, and the body may become less sensitive to insulin. This can lead to diabetes.

Possible changes in body fats and sugars:

  • changes in cholesterol ("bad" LDL cholesterol goes up, "good" HDL cholesterol goes down)
  • increase in triglyceride levels
  • increase in blood sugar levels
  • less sensitivity to insulin

Exercise may be able to lessen the fat deposits around the gut. Diet can help lower the blood fats (cholesterol and triglycerides) that increase the risk of heart disease.

Fat around neck, shoulders, breasts, and face

Another change is fat buildup on the back of the shoulders and neck (sometimes called a "buffalo hump"). Fat on the back of the neck doesn't raise the risk of heart disease but can cause headaches and sometimes problems with breathing and sleeping.

Fat gain can make breasts bigger, which can cause back pain. Women seem more likely than men to experience greater fat gain in the breasts and the abdomen.

Fat accumulation also can make the face appear fuller.

Click to see enlarged image:

Fat on the back of the neck
Fat on the back of the neck

Fatty bumps on the body

Little fatty bumps called lipomas can appear under the skin anywhere on the body.

Fat loss in the face, legs, or arms

Some people lose fat, usually from the face, arms, legs, or buttocks. Cheeks may appear sunken. Muscles and veins in the legs may look bigger because there is less fat to hide them.

This fat loss is from the subcutaneous fat found just underneath the skin. These changes can affect a person's self-esteem, and can lead to depression and anxiety.

Click to see enlarged image:

Fat loss in the face
Fat loss in the face

Fat loss in the leg
Fat loss in the leg

What can you do?

Experts aren't sure whether these changes are due to HIV itself, or to the anti-HIV drugs. There are no proven cures at this time, but there are steps you can take to reduce the effects.

Plastic surgeons can use liposuction (sucking out the fat) on a buffalo hump. Liposuction, however, is not a good treatment for fat around the gut because of possible damage to the organs.

For fat loss in the face, doctors can inject fat or a fat-like substance to fill out sunken cheeks or other areas, such as around the eyes and mouth. In 2004, the U.S. Food and Drug Administration approved the use of Sculptra™, an injectable product that can replace fat lost from the face. The VA is closely monitoring the data on Sculptra™ before deciding whether to approve it use within the VA.

If you are experiencing any of these changes, be sure to talk to your health provider about them. Finding a solution to these body shape changes is a major research effort, and new therapies may become available in the future.

Opportunistic infections and AIDS-related cancers

HIV weakens your immune system, leaving you vulnerable to certain infections and cancers. The infections are called "opportunistic" because they take the opportunity to attack you when your immune system is weak. The cancers are called "AIDS related" because they appear mostly in people who have advanced, later-stage HIV infection, known as AIDS.

Most people who die of AIDS do not die from the virus itself. They die from opportunistic infections (or "OIs"). Often, people are infected with the OI long before they become infected with HIV. Their functioning immune system keeps the OI under control, so they don't have any symptoms of the infection. Once HIV damages their immune system enough, the OI becomes uncontrolled and makes them sick. In fact, many HIV-negative people have opportunistic infections but don't know about it because their immune system keeps the infections in check.

If you have HIV, you can take antibiotics to prevent the OI from causing disease. For example, one common opportunistic infection is Pneumocystis jiroveci pneumonia (also called PCP). Most people already have the microbe that causes PCP in their body, but it doesn't make them sick. An HIV-positive person, however, may need to take antibiotics to keep from getting very sick.

Why it's important to get an early diagnosis

It is important to catch the early symptoms of OIs and AIDS-related cancers before they take hold in various organs of the body, such as the lungs and brain. The sooner your doctor can diagnose and treat the condition, the more likely you are to make a full recovery. This means you need to keep track of your symptoms and report them to your doctor. Plan on having checkups regularly, at least every 3 months.

Also, because OIs and AIDS-related cancers tend to occur more commonly in people with lower CD4 counts, it is important to have your CD4 count checked every 3 to 4 months, so that you can begin anti-HIV therapy before your risk of developing an OI or AIDS-related cancer becomes too high.

Common types of illnesses

OIs can be caused by viruses, bacteria, fungus, even parasites. Common opportunistic infections are:

  • Tuberculosis, or TB
  • Pneumocystis jiroveci, or PCP (a type of pneumonia)
  • Wasting syndrome (severe weight loss)
  • Candidiasis, or thrush (yeast infections)
  • Herpes zoster (shingles)
  • HIV dementia (confusion)

A common AIDS-related cancer is:

  • Kaposi sarcoma, or KS

What follows are descriptions of some of these illnesses.

Candidiasis (thrush)

Candidiasis (or thrush) is a fungal infection of the mouth or lungs. Most people already have the Candida fungus in their body, but the body keeps it in check. Someone whose immune system is weakened is more likely to develop problems.

Some people show no symptoms, but for those who have them, symptoms can include:

  • white patches on the tongue
  • smooth red areas on the back of the tongue
  • painful areas in the mouth
  • changes in taste
  • sensitivity to spicy foods
  • decreased appetite

Treatments for thrush include oral drugs (suspensions) that you swish around in your mouth and swallow. If you are taking drugs for thrush, be sure to:

  • brush your teeth after each meal;
  • rinse your mouth of all food before using either lozenges or suspension;
  • avoid hurting your mouth: use a soft toothbrush, avoid foods and drinks that are too hot or too spicy.

Cervical cancer (for women)

Cervical cancer often is caused by the same virus that causes anal and genital warts. The virus is called human papilloma virus (or HPV). Safer sex may help reduce the risk of this infection, but many women who are infected with HPV never had genital warts.

In the early stage, there are often no symptoms. Some women, however, may notice bleeding between their periods or spots of blood after sex. Women should get regular exams with their gynecologist to check for cervical cancer.

Coccidioidomycosis

This is a caused by a fungus present in soil in desert areas of Mexico and South America and in the southwestern United States, but risk of infection is highest in Kern and Tulare counties and the San Joaquin Valley in California.

The fungus is inhaled from dust and dirt carried in the air or wind, rather than passed from person to person. Most people don't have symptoms. Others will feel like they have the flu, sometimes with chest pain and a cough. Infection can lead to meningitis, including headache, fever, and altered mental states.

Treatment with antifungal drugs usually is given for life to prevent the infection from returning. Sometimes surgery is required to remove infected tissue. The seriousness of the disease depends on what part or parts of the body the fungus has infected.

Cryptococcosis

This fungus is present in soil, usually where there are bird droppings, particularly those of pigeons. It can be passed through the air or wind. It's important to avoid handling birds, even as pets, and to avoid areas with lots of bird droppings.

The fungus can infect different organs, such as the lung, heart, and central nervous system. Symptoms vary, depending on where the infection occurs. In the lung, for example, symptoms can include:

  • cough
  • fever
  • malaise
  • shortness of breath

This infection is very serious. It can lead to meningitis (swelling in the brain) and pneumonia. Drugs are available for this infection, but they do not cure it.

Cryptosporidiosis

This parasite is found in the feces of many animals, including humans. It can contaminate drinking water.

To avoid infection from people, avoid contact with feces (diapers, sex involving direct oral-anal contact). Try to avoid accidentally swallowing water when swimming in pools, rivers, or lakes. Do not drink from streams. Drink bottled water or use filters on tap water (look for "submicron" filters, which will filter out this parasite).

Symptoms of this infection include:

  • persistent watery diarrhea
  • nausea
  • vomiting
  • abdominal pain
  • cramping
  • loss of appetite
  • weight loss

There are not effective drugs against this parasite, but if you are taking anti-HIV drugs, they may help decrease your symptoms or even help rid your body of the parasite. If you are infected, it's best not to work as a food handler or share a room with someone whose immune system is also weakened.

Cytomegalovirus (CMV)

Cytomegalovirus (or CMV) is passed by close contact through sex and through saliva, urine, and other body fluids. It can be passed from mother to child during pregnancy and by breast-feeding. If you are not infected, safer sex may help prevent it.

Most people probably are infected with this virus, though they have no symptoms. In HIV-positive people, the infection can be extremely serious. Symptoms can include:

  • blind spots in vision, loss of peripheral vision
  • headache, difficulty concentrating, sleepiness
  • mouth ulcers
  • pain in the abdomen, bloody diarrhea
  • fever, fatigue, weight loss
  • shortness of breath
  • lower back pain
  • confusion, apathy, withdrawal, personality changes

Drugs are available to keep symptoms of the infection under control. Anti-HIV drugs can improve the condition, too. If you haven't started taking drugs for HIV, it may be best to wait until you have been on treatment for CMV for a few weeks.

Many people whose vision is affected by the virus will have to remain on therapy for life to prevent blindness. Some will be able to stop their CMV therapy if their immune system has recovered sufficiently with antiretroviral therapy, but will need to have regular eye checkups to make sure the CMV does not return. Treatment can prevent further loss of vision but cannot reverse existing damage. If you experience any vision problems, tell your provider immediately.

Herpes simplex virus

Herpes simplex is caused by a virus. Symptoms include red, painful sores on the mouth ("fever blisters"), genitals, or anal area. Genital herpes is passed through sexual contact. Herpes on the mouth is easily spread through kissing. It can be spread to the genitals through oral sex. The virus can be spread even if you don't have blisters. Safer sex can decrease the risk of infection.

Drugs are available to help herpes blisters heal, but there's no cure. Outbreaks may occur periodically for the rest of your life.

For more information on herpes, call the HELP line in Atlanta at 404-294-6364 or the National Herpes Hotline at 919-361-8488.

Herpes zoster (shingles)

Shingles is caused by a virus, the same one that causes chickenpox. People with shingles usually had chickenpox as a child, and the virus is getting active again.

Symptoms can include:

  • painful skin blisters on one side of the face or body
  • some vision loss

The skin blisters can be extremely painful. Treatment is available to help the blisters heal, but there is no cure. Bathing them in mild soap and water can help. Antibiotic ointments can help keep the infection from spreading.

Histoplasmosis

This infection is caused by a fungus present in the soil contaminated with bat or bird droppings, particularly in eastern and central United States. It gets in the air when the soil is disturbed, such as when people explore caves. It is not passed from person to person.

Symptoms can include:

  • fever
  • weight loss
  • cough
  • shortness of breath
  • abdominal pain

This is an extremely serious disease, and often leads to death. Treatment must be lifelong to prevent the disease from coming back. Even with treatment, the disease may recur.

HIV dementia

Sometimes called "HIV encephalopathy" or "AIDS dementia," this disease is caused by HIV invading the brain.

Symptoms can include:

  • memory loss
  • depressed mood
  • unsteadiness when walking
  • irritability
  • apathy
  • clumsiness
  • shaky hands (poor handwriting)
  • personality changes

This condition is less common now that there are drugs available to treat HIV. It may even be prevented by using HIV drugs that cross into the brain.

People who are affected need to have a strong support system. Friends, roommates, or family members can help make sure that HIV medications are taken on time, in the right combination, and at the right dose. If memory is poor, a person can use notes, calendars, and alarms to remember medicines, appointments, and other important events.

HIV wasting syndrome

Wasting syndrome refers to unwanted weight loss that is equal to more than 10 percent of their body weight. For a 150-pound man, this means a loss of 15 pounds or more. Weight loss can result in loss of both fat and muscle. Once lost, the weight is difficult to regain.

The condition can be caused by many things: HIV, inflammation, or opportunistic infections. The weight loss may be accompanied by low-grade fever, and sometimes diarrhea. The person may get full easily, or have no appetite at all.

The condition may be preventable, to some degree, by eating a good diet. A "good diet" for an HIV-positive person may not be the low-fat, low-calorie diet recommended for healthy people. Compared with other people, you may need to take in more calories and protein to keep from losing muscle mass. To do this, you can add to your meals:

  • peanut butter
  • legumes (dried beans and peas)
  • cheeses
  • eggs
  • instant breakfast drinks
  • milkshakes
  • sauces

You can also maintain or increase muscle mass through exercise, especially with progressive strength-building exercises. These include resistance and weight-lifting exercise. (For more diet and exercise tips, see the Daily Living (http://www.hiv.va.gov/daily-00-00) section.)

Isosporiasis

This condition is caused by a parasite found in feces. It may contaminate food or drinking water. It is most common in tropical and subtropical regions of the United States. To avoid infection, do not drink water from rivers and streams. When appropriate, drink bottled water or use filters on tap water. Cook food thoroughly.

Symptoms can include:

  • stomach cramps
  • watery diarrhea
  • weight loss (which may be significant)
  • weakness
  • loss of appetite
  • fever

Antifungal drugs can treat the infection, but they may need to be taken for a long time to keep the parasite in check.

Kaposi sarcoma

Kaposi sarcoma (KS) is the most common cancer seen in HIV. This cancer is caused by the human herpes virus 8 (HHV-8). The virus can be spread by deep kissing, unprotected sex, and sharing needles. It also can be spread from mother to child.

Symptoms include brown, purple, or pink lesions (or blotches) on the skin, usually on the arms and legs, neck or head, and sometimes in the mouth. Sometimes there is tooth pain or tooth loss, weight loss, night sweats, or fever for longer than 2 weeks. KS can also affect internal organs, most seriously the lungs. A person can have KS of their internal organs even if they don't have lesions on their skin.

HIV drugs can slow the growth of lesions, even reverse the condition itself. KS has become less common and much more treatable since the development of effective combination HIV therapy. Other treatments for KS, such as laser therapy, are meant to relieve symptoms and improve the appearance of the lesions. There is also chemotherapy that helps control KS. It's important that people with KS keep lesions clean. They should call their provider if the lesions are spreading, if swelling gets worse, or if they develop a cough, shortness of breath, or problems in the gut.

Lymphomas

Lymphomas associated with HIV include a large group of cancers that begin in the cells of the immune system. The cancers can go on to invade different parts of the body, such as the central nervous system, liver, bone marrow, and gastrointestinal tract. Symptoms depend on where the cancer resides.

Treatment varies depending on the specific cancer, but can include radiation and chemotherapy. HIV drugs, by boosting the immune system, can help the body fight the cancer, too. In fact, the development of effective combination HIV therapy has greatly improved the outlook for persons with HIV-associated lymphoma.

Mycobacterium avium complex (MAC) or M kansasii disease

This condition is caused by bacteria present everywhere in the environment-- in soil, food and animals. It is difficult to avoid exposure because MAC is in so many places. In general, avoid handling soil, and carefully handle and prepare food. (See food safety tips (http://www.hiv.va.gov/diet-01-06) in Diet and Nutrition in the "Daily Living" section.)

Symptoms of MAC can include:

  • fever
  • night sweats
  • weight loss
  • loss of appetite
  • chronic diarrhea
  • weakness
  • fatigue
  • abdominal pain

Medicines will not get rid of the infection, but can lessen symptoms and improve how you feel. HIV drugs, by helping your immune system stay strong, can help your body fight the infection. Call your doctor if you have vision changes or abdominal discomfort while being treated for MAC.

Pneumocystis pneumonia (PCP)

An unusual fungus found in many places in the environment causes this condition. Nearly two out of three children have been exposed to it by age 4. The fungus can affect many organs, the most common being the lung.

Symptoms can include:

  • fever
  • shortness of breath
  • dry cough
  • night sweats or fatigue

The usual treatment is with antibiotics called sulfa drugs. Do not take dairy products within 2 hours before, or 1 hour after, a dose of sulfa. (Dairy products can interfere with your body's ability to absorb the medicine.)

After completing treatment, if you experience shortness of breath (especially with exercise), fever, chills and sweats, or a new cough, see your doctor.

PCP is much more common in persons with a CD4 count less than 200 cells per cubic millimeter of blood. Starting combination antiretroviral therapy before your CD4 count gets this low, or, if you already have a CD4 count less than 200, taking daily doses of protective antibiotics, greatly reduces the risk of developing PCP.

Pneumonia, recurrent

Bacterial pneumonia (often caused by Streptococcus pneumoniae or Haemophilus influenzae) can affect people whose immune systems are not weakened by HIV. Persons infected with HIV, however, are much more likely than people who are HIV negative to develop bacterial pneumonia. Fortunately, these pneumonias can be treated with available antibiotics. HIV-infected persons should receive a vaccine called the Pneumovax, to help prevent pneumonia caused by Streptococcus pneumoniae.

Progressive multifocal leukoencephalopathy (PML)

This disease is caused by a virus called the JC virus. Most people probably already are infected, but in HIV-positive people the virus can cause disease. The virus is possibly spread through sexual contact, or from mother to child.

Symptoms can include:

  • difficulty in speaking
  • difficulty in walking
  • weakness in arms or legs
  • personality changes
  • seizures
  • changes in vision
  • headache
  • shaky hands

There is no specific treatment for PML, but some HIV drug combinations can reverse the symptoms and keep the JC virus under control. People with PML should have a good support system. Friends, roommates, or family members can help make sure that HIV medications are taken on time, in the right combination, and at the right dose. The disease is extremely serious and can lead to death.

Salmonella septicemia, recurrent

Salmonella is a bacteria often found in food such as undercooked poultry, eggs, and unpasteurized milk. It is also present in water, soil, kitchen surfaces, animal feces, and raw meat and on certain animals, such as reptiles.

Symptoms can include:

  • diarrhea
  • fever

Salmonella septicemia usually is treated with antibiotics. Drug therapy may be required for life to prevent relapses.

Toxoplasmosis

The parasite that causes toxoplasmosis is found in almost all animals. Cats and birds are major sources of infection. Indoor cats pose less risk, but cats that are free of toxoplasmosis can go outside can carry it back in. Avoid cat feces (use gloves to change litter). Avoid handling birds. Never eat undercooked meats, particularly pork or lamb.

Symptoms can include:

  • dull, constant headache
  • changes in vision
  • disorientation
  • seizures

Treatment for toxoplasmosis is sometimes lifelong to prevent symptoms from recurring.

If you are being treated for toxoplasmosis, see your doctor promptly if you develop a rash or if your symptoms worsen. Help your memory by posting reminder notes. Keep keys, glasses, phone numbers, and other important items in the same place, so you can always find them. Keep a calendar of your appointments posted in a place you look at a lot, such as across from your favorite chair.

Tuberculosis (TB)

Mycobacterium tuberculosis disease is caused by a bacteria passed through the air when someone coughs, sneezes, or talks. It is spread easily in closed-in places, such as low-income housing, shelters, and jails.

Tuberculosis (TB) can occur early in the course of HIV infection, often when CD4 counts are slightly below normal. Symptoms can include fever, night sweats, weight loss, fatigue, loss of appetite, and coughing.

TB can be prevented and usually is curable. If left untreated, it can kill. It's important that you take your TB medication exactly as prescribed (missed doses can result in the TB germ developing resistance to the drug). Some TB medications can damage your liver, but your liver usually recovers if the medications are stopped. If your skin or eyes turn yellow, or if your urine darkens to the color of Coca-Cola while you are taking tuberculosis medications, see your doctor immediately. It could be a sign of liver damage.

CD4 counts and infections

The weaker your immune system, the more likely you are to get an opportunistic infection.

In general, here's how a CD4 count relates to your risk of OIs:

Above 500 CD4 cells
No unusual infections likely to appear.

200-500 CD4 cells
There is an increased risk for certain infections, such as shingles, thrush, skin infections, bacterial sinus and lung infections, and TB.

50-200 CD4 cells
There is an increased risk for PCP (pneumonia), and you should begin treatment to prevent it. If counts are below 100, other preventive treatment should begin for MAC.

AIDS-defining illnesses

Certain serious and life-threatening diseases that occur in HIV-positive people are called "AIDS-defining" illnesses. When a person gets one of these illnesses, he or she is diagnosed with the advanced stage of HIV infection known as AIDS.

The Centers for Disease Control and Prevention (CDC) has developed a list of these illnesses (see below). No single patient is likely to have all of these problems. Some of the conditions, in fact, are rare.

  • Candidiasis of the esophagus, bronchi, trachea, or lungs (but NOT the mouth, which is also known as thrush)
  • Cervical cancer, invasive
  • Coccidioidomycosis, disseminated or extrapulmonary
  • Cryptococcosis, extrapulmonary
  • Cryptosporidiosis, chronic intestinal (greater than one month's duration)
  • Cytomegalovirus disease (other than liver, spleen, or nodes)
  • Cytomegalovirus retinitis (with loss of vision)
  • Encephalopathy, HIV related
  • Herpes simplex: chronic ulcer(s) (more than 1 month in duration); or bronchitis, pneumonitis, or esophagitis
  • Histoplasmosis, disseminated or extrapulmonary
  • Isosporiasis, chronic intestinal (more than 1 month in duration)
  • Kaposi sarcoma
  • Lymphoma, Burkitt's (or equivalent term)
  • Lymphoma, immunoblastic (or equivalent term)
  • Lymphoma, primary, of brain
  • Mycobacterium avium complex or M kansasii, disseminated or extrapulmonary
  • Mycobacterium tuberculosis, any site (pulmonary or extrapulmonary)
  • Mycobacterium, other species or unidentified species, disseminated or extrapulmonary
  • Pneumocystis jiroveci pneumonia
  • Pneumonia, recurrent
  • Progressive multifocal leukoencephalopathy
  • Salmonella septicemia, recurrent
  • Toxoplasmosis of brain
  • Wasting syndrome due to HIV

(Source: Revised classification system for HIV infection and expanded surveillance case definition for AIDS among adolescents and adults. Morbidity and Mortality Weekly Report, December 18, 1992/41 (RR-17), 1993).

Preventing OIs

Opportunistic infections can be caused by viruses, bacteria, and fungus, even parasites. One way to avoid these infections is to reduce your risk of exposure to these germs. The following pages offer some practical suggestions.

Sexual exposures

  • Use condoms every time you have sex.
  • Avoid oral-anal sex.
  • Use waterproof gloves if you're going to insert your finger into your partner's anus.
  • Frequently wash hands and genitals with warm soapy water after any sex play that brings them in contact with feces.

Injection drug use

  • Do not inject drugs.
  • If you cannot stop using, avoid sharing needles and other equipment.
  • Get vaccinated against hepatitis A and hepatitis B.

Job exposure

Certain type of jobs or facilities can put an HIV-positive person at risk of OIs. These include work in:

  • health care facilities
  • homeless shelters
  • day-care centers
  • prisons
  • places that involved work with animals (such as farms, veterinary clinics, pet stores)

Pet exposure

Pets can carry diseases that don't affect a healthy person but can pose a serious risk to someone with HIV. For that reason, if you have a pet, follow these suggestions.

General

  • Wash your hands after handling your pet (especially before eating).
  • Avoid contact with your pet's feces. If your pet has diarrhea, ask a friend or family member to take care of it.
  • If you are getting a new pet, try not to get one that is younger than a year old, especially if it has diarrhea. (Young animals are more likely to carry certain germs like Salmonella.) Avoid stray animals.

Cats

  • Keep your cat indoors. It should not be allowed to hunt, and should not be fed raw or undercooked meat.
  • Have a friend or family member clean the litter box daily. If you have to do it yourself, wash your hands thoroughly afterward.
  • Control fleas (ask your vet how to do this).
  • Avoid playing with your cat in ways that may result in scratches or bites. If you do get scratched or bitten, wash the area right away. Don't let your cat lick your cuts or wounds.

Birds

  • Avoid areas where there are bird droppings. Do not disturb soil underneath bird-roosting sites.

Others

  • Avoid touching reptiles, such as snakes, lizards, iguanas, and turtles.
  • Wear gloves if you are cleaning an aquarium.

Cautions about food and water

  • Avoid raw or undercooked eggs (including hollandaise sauce, Caesar salad dressing, some mayonnaises, eggnog, cake and cookie batter).
  • Avoid raw or undercooked poultry, meat, and seafood (especially raw seafood). Use a meat thermometer. Cook poultry to 180° F, and other meats to 165° F. If you don't have a meat thermometer, cook meat until no traces of pink remain.
  • Avoid unpasteurized dairy products and fruit juice.
  • Avoid raw seed sprouts (such as alfalfa, mung beans).
  • Wash fruits and vegetables thoroughly before eating.
  • Don't let uncooked meats come into contact with other uncooked foods. (Wash thoroughly hands, cutting boards, counters, knives, and other utensils after contact with uncooked meats.)
  • Do not drink water directly from lakes or rivers.

HIV-positive people whose immune systems are severely weakened may want to:

  • Avoid soft cheeses (feta, brie, camembert, blue-veined, and Mexican-style cheeses, such as queso fresco).
  • Cook leftover foods or ready-to-eat foods, such as hot dogs, until they are steaming hot.
  • Avoid food from delicatessens, such as prepared meats, salads, and cheeses--or heat these foods until steaming before eating.

Cautions about travel

Before you travel to other countries, particularly developing countries, talk to your doctor about ways you can avoid getting sick on your trip.

When traveling in developing countries, people who are HIV positive have to be especially cautious of food and water that may be contaminated. It is best to avoid:

  • raw fruits and vegetables (unless you peel them first)
  • raw or undercooked seafood or meat
  • tap water (or ice made with tap water)
  • unpasteurized milk or dairy products
  • swallowing water when swimming

Talk to your health care provider about whether you need to get vaccinated before your trip and whether you need to take drugs to prevent diseases that are common in the country you are going to visit.

Questions to Ask Your Doctor about Your Diagnosis

To help you understand your diagnosis, here is a list of questions to ask your doctor. You can print this page and take it with you to your doctor appointments.

  • How much experience do you have treating HIV infection and AIDS?

  • What do my lab tests say about the health of my immune system?

  • How will you keep track of my immune system's health?

  • What can I do to prevent complications, such as opportunistic infections, and stay healthy?

  • What are the signs that I might be getting an opportunistic infection or AIDS-related cancer?

  • Are there certain daily habits I should change in order to help me stay healthy?

  • How much exercise should I aim for?

  • How will I know whether I should start taking anti-HIV drugs?

  • How can I protect others from getting infected with HIV?

Resources

Tips & Tools

Other Web Sites

  • Project Inform's Introductory Packet
    (http://www.projectinform.org/intro.html)
    Starting place for people newly diagnosed with HIV. Features articles and fact sheets on treatment strategies, doctor/patient relationships, and more. Project Inform also offers information on Opportunistic Infections (http://www.projinf.org/indexS.html#ois) .
  • Just Diagnosed with HIV?
    (http://www.thebody.com/learning.html)
    The Body's starting place for people newly diagnosed with HIV. Articles on understanding HIV, choosing and working with a physician, first steps to treatment, telling others.
  • HIV/AIDS & Health
    (http://www.gmhc.org/health.html)
    GMHC's practical information for people with HIV, including sections for women, gay men, HIV/AIDS treatment basics, nutrition, mental health, financial and insurance issues, alcohol and drug use, and an HIV/AIDS glossary.
  • HIV/AIDS Program
    (http://www.metrokc.gov/HEALTH/apu/menuhivp.htm)
    Resources for HIV-positive persons developed by the Seattle & King County County Department of Public Health which includes Positive Living: A Practical Guide for People with HIV (http://www.metrokc.gov/HEALTH/apu/workbook/posliv.pdf) [PDF], a workbook for people with HIV covering medical, practical, and emotional issues. Also available in Spanish (http://www.metrokc.gov/HEALTH/apu/vivir/toc.htm) .
  • Support Groups:
  • Hotlines:
    • The CDC National AIDS Hotline, including its Spanish Service and TTY Service, is operated under contract with Centers for Disease Control and Prevention. Group calls can also be arranged by calling the hotline. English: 1-800-CDC-INFO (1-800-232-4636), 24 hours a day, 7 days a week.
      Spanish: 1-800-344-7432, 8 am - 2 am eastern time, 7 days a week.
      CDC National STD Hotline: 1-800-232-4636, 24 hours a day, 7 days a week.
  • More Information:
    • Find Web sites (http://www.hiv.va.gov/ptli-00-00) on more specific topics, such as opportunistic infections, travel health, and more.

Coinfection Resources

  • VA National Hepatitis C Web Site
    (http://www.hepatitis.va.gov)
    Information on hepatitis C for health care providers and patients from the Department of Veterans Affairs.
  • CDC Viral Hepatitis Web Site
    (http://www.cdc.gov/ncidod/diseases/hepatitis/index.htm)
    Information on all types of viral hepatitis from the National Center for Infectious Diseases of the U.S. Centers for Disease Control and Prevention (CDC).
  • HCV Advocate
    (http://www.hcvadvocate.org/)
    Web site of the Hepatitis Support Project, whose goal is to offer support to those who are affected by hepatitis C and related coinfections. Information and education is provided, as well as access to support groups.
  • Hepatitis B Foundation
    (http://www.hepb.org/)
    A nonprofit organization dedicated to finding a cure and improving the quality of life of those affected by hepatitis B worldwide through research, education, and patient advocacy. Features information in English, Chinese, Korean, and Vietnamese.
  • HIV/AIDS/Hepatitis C Nightline:
    Hotline providing support for people with HIV or hepatitis C and their caregivers during the evening and nightime hours. 1-800-273-AIDS or 415-434-AIDS; 5 pm - 5 am Pacific time. Also offers Spanish-language hotline at: 1-800-303-SIDA or 415-989-5212.
  • Guide to Hepatitis C for People Living with HIV
    (http://www.aidsinfonyc.org/tag/coinf/guidetohcv.pdf)
    A booklet on testing, treatment, coinfection, and support from the Treatment Action Group in New York.