Living with HIV

Frequently asked Questions

Written and funded by Roger Spitzer, MD. Updated 7/01/2005

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I've tested HIV-positive. What does that mean?
You have been infected with HIV, the Human Immunodeficiency Virus, the germ which causes AIDS. It does not necessarily mean you have full blown AIDS at this time. A positive test means that the virus has entered your body through blood, semen or vaginal secretions and that you can spread HIV to others, even if you have no symptoms. HIV usually begins to attack your immune system (white blood cells that fight germs) immediately, but symptoms may not appear for several years after you are infected, and in rare cases may not appear at all. With good medical care and proper treatment, HIV infection, while not yet curable, can often be kept under control for many years.

What does HIV do to my immune system?

When you become infected with HIV, the virus attacks your CD4 lymphocytes (also called T helper or T4 cells), a type of white blood cell that is responsible for fighting certain infections (germs). ( See figure 1) The virus first attaches to the CD4 cell (1) and injects its genetic material (RNA). The RNA then instructs the CD4 cell to produce more of the virus (2). These new viruses (virions) are then released into the bloodstream (3) and the CD4 cell is destroyed. Over time, the virus may destroy CD4 cells faster than your body can replace them, leading to a gradual decline in the number of CD4 cells. Certain germs take advantage of this opportunity when your defenses are down and may cause what we term "opportunistic infections" (OIs). At this point we call the condition AIDS. Your entire immune system is not destroyed by HIV, only the CD4 cells, so your body can still fight off colds, flus and many common bacterial infections, although not as well as someone with an intact immune system.

What symptoms should I be worried about? Early on in HIV infection, there are usually no symptoms. This is called the latent period, and may last 10 years or longer from the initial infection. Many people with HIV first experience swollen lymph nodes (glands) in their neck, groin and armpit. These are painless and signify areas where your body's immune system is actively fighting HIV. The earliest opportunistic infection is usually thrush, a yeast infection of the mouth. This looks like cream cheese lining the sides and roof of the mouth and is painless when mild, but can cause a scratchy sensation or pain when more severe. Fever may signify any of a number of infectious problems, many of which are dangerous for someone with HIV. Coughing or shortness of breath may indicate the presence of pneumonia. Headaches and/or a stiff neck, especially if accompanied by fever, can indicate meningitis or infection in the brain. Worsening vision or "floaters" can be seen with certain eye infections. Diarrhea and weight loss are common with HIV, but this is often treatable. Numbness, burning or tingling of the hands and feet may be from medication used to treat HIV or the HIV infection itself. Red/purple lumps or bumps on the skin may indicate a type of tumor called Kaposi's sarcoma. If you experience any of the above symptoms, notify your physician, as it is impossible to distinguish minor from life-threatening conditions without a full evaluation.

How do I keep from spreading HIV to others? HIV is spread through sexual contact, sharing contaminated needles, heavy exposure to infected blood or body fluids and transfusion of infected blood or blood products. It is not spread by simple kissing or hugging, sharing eating utensils or toilets. Caregivers who are exposed to urine, blood or feces should use latex gloves. If possible, abstaining from intercourse is recommended, as the only 100% safe sex is no sex at all. If you still engage in sexual intercourse, you should notify your partner that you are HIV positive and use a latex condom. Even if your partner is HIV positive, you should still use a condom to avoid getting other sexually transmitted diseases, such as hepatitis, gonorrhea or syphilis, as well as resistant strains of HIV. HIV can be transmitted by oral sex. You should not donate blood. If you use drugs intravenously, do not share your needles with others.

How do I fight HIV? There are currently many medications available to fight HIV, termed antiretroviral drugs. These work by making it more difficult for HIV to make new viruses in your CD4 cells. These drugs do not kill HIV, but they do slow it down and allow you to live longer. The current recommendation is to wait until the CD4 count has dropped below normal levels before starting treatment, so those with early HIV infection are usually observed without medications but with regular monitoring of the CD4 count. The currently available drugs are usually well tolerated, but all of them may produce side effects, which your physician will tell you about. It is very important to take all of your medications all of the time, as HIV usually becomes resistant to the drugs if you frequently miss doses. Studies have shown that at least 95% of the medication must be taken as prescribed for the best outcomes. There are many new drugs which are being investigated for their ability to fight HIV in people. In addition to medication, having a positive attitude seems to help. Good nutrition allows your body to fight HIV more efficiently. We recommend a normal balanced diet with a multivitamin added if your appetite is poor.

How can I prevent opportunistic infections (OIs)? Currently, several of the opportunistic infections that can occur in AIDS can be prevented to some degree with medication. These include Pneumocystis carinii pneumonia (PCP), Toxoplasma encephalitis, tuberculosis, Herpes infections and Mycobacterium avium complex (MAC) infections. When your CD4 count becomes low enough that you may be susceptible to these infections, your doctor will want to start you on these preventive medicines. Vaccinations to prevent pneumonia, influenza and hepatitis A and B are recommended for HIV patients. Avoid handling raw poultry or eggs without careful handwashing to prevent Salmonella infections. You should not eat raw shellfish, which can have hepatitis A and a bacterium called Vibrio. You should not eat raw or rare beef, as this may contain Toxoplasma. The best method we have to prevent (and sometimes cure) OIs is to raise the CD4 count with antiretroviral therapy. Click here for more details.

What does my CD4 count mean?
A normal CD4 count is 400-1200 cells per cubic millimeter (mm³), with some variation from lab to lab. When your CD4 count is above 400/mm³, we rarely see any opportunistic infections and there are usually no symptoms related to HIV, except for swollen lymph nodes in some people. When the CD4 count is between 200 and 400/mm³ one can develop tuberculosis, thrush and frequent Herpes infections. When the CD4 count is below 200/mm³ you are classified as having AIDS and become susceptible to most of the opportunistic infections, although most people remain asymptomatic for quite a while after their CD4 count reaches this level. CD4 counts below 50/mm³ indicate a very suppressed immune system and are associated with late HIV-related problems such as CMV retinitis and dementia (inability to think clearly). Again, many people remain asymptomatic for months or years despite having very low CD4 counts.

At baseline (1) the CD4 count is normal (see figure 2). Initially (2) there is a rapid drop in CD4 count during the first several weeks, which usually rebounds to near baseline levels. Over the next several years there is a gradual decline in the CD4 count (3). Eventually the CD4 count drops below 200/mm³ (4) and we start to see symptoms of HIV infection.

 
The CD4 count is measured by doing a blood test, the results of which usually take 3-5 business days to come back to your doctor. Levels will fluctuate quite a bit, with changes of up to 50/mm³ within a single day being common. Gradual trends seen in your CD4 count over time should be what you keep track of, whether the count goes up or down by 20 or 30/mm³ from one measurement to the next is not that significant.

What is viral load?
A viral load test, or HIV RNA assay, measures the amount of virus circulating in your bloodstream at a given time. This gives us a better picture of how active your HIV infection is. High viral load values are associated with a more rapid progression to AIDS and indicate a need for more aggressive treatment. Additionally, the viral load will respond to changes in your medications within 2 weeks, so we can quickly assess how well the medicines are fighting HIV. Generally, viral load values of over 100,000 copies per ml. indicate the potential for rapid progression. Most people with untreated HIV infection have viral loads in the 50,000 - 150,000 range. Women tend to have lower levels than men. Effective treatment will get the viral load down by at least 90%, preferably to a value of less than 50. Many patients will have their viral load drop to undetectable levels with combination therapy. Current thinking is that once treatment is initiated we should try to get the viral load down to undetectable levels whenever possible, as this seems to be the best (and probably only) way to keep HIV under control for long periods of time. Two test methods are available--bDNA and PCR. Both give comparable results, but it is best to try to stick with one method to avoid comparing apples and oranges. Click here for data showing the likelihood of disease progression to AIDS (without treatment) with different HIV RNA levels.

With treatment my CD4 count has gone up over 200! Can I stop taking some of these medications?
Maybe. If HIV has caused the number of CD4 cells to drop to very low levels, then the variety of remaining cells is not as great as someone with a normal immune system. When the CD4 count initially rises due to antiretroviral therapy, the repetoire of CD4 cells designed to fight infections remains diminished, and thus not fully capable of fighting all infections. An analogy would be if the Navy were destroyed in a war, but you later replaced all the sailors with army infantry, you would have the proper number of fighting men but not the variety needed to fight a battle at sea. There are quite a number of reports that after maintaining low HIV RNA levels for 6-12 months the immune system does partially recover (i.e. you get some sailors back), allowing some previously incurable complications of AIDS (such as CMV retinitis) to be cured. In scientific terms, the first CD4 cells to recover are what we term memory T cells, and are already programmed to fight one specific infection. Later on we see a recovery in the naive T cells, which can adapt to fight infections you have not been exposed to previously. Most physicians are comfortable stopping prophylaxis for Mycobacterium avium (MAC) if the CD4 count rises above 100 and data indicate that primary (and probably secondary) PCP prophylaxis can be stopped if there is a sustained rise in CD4 counts to over 200/mm³ for 6 months or more.

What you cannot do is cut back on your antiretroviral medications. Doctors have tried reducing the amount of antiretroviral therapy in patients once the virus has been supressed, and it just doesn't work. HIV will almost always start multiplying again when given the chance, even after prolonged supression.

Some people have no detectable HIV in their blood. Are they cured?
No, they are not. When we say the viral load is undetectable, it means the level of virus present is less than what the tests can detect (currently about 13-50 copies per ml.), but not zero. Additionally, levels of virus in the lymph nodes are about 10 times higher than what we see in the blood. Virtually everybody with "undetectable" HIV RNA levels develop detectable HIV RNA within several weeks if their medications are stopped, showing that HIV is still present.

What should I know about my medications?
Nucleoside Inhibitors
Retrovir (AZT): The most common side effect of Retrovir is suppression of the bone marrow, which is what makes blood cells. This may lead to anemia (not enough red blood cells) and/or leukopenia (not enough white blood cells). For this reason, your doctor will want to monitor your blood count frequently while you are taking Retrovir. When you first start taking Retrovir, you may experience headaches, insomnia, nausea or fatigue, all of which usually resolve in a few weeks once your body gets used to the medication.
Videx (DDI), Hivid (DDC) and Zerit (D4T): The most common side effect of these medications is called peripheral neuropathy, which effects the long nerves that go to your hands and feet. The initial symptoms are usually numbness, tingling or a burning sensation in the feet or hands. This can become very severe and painful, but usually goes away when the medication is stopped. A less common side effect is pancreatitis, or inflammation of the pancreas. The pancreas normally helps to digest food. When it becomes inflamed one may have nausea, vomiting, severe abdominal pain and/or fever. Notify your doctor immediately should any of these symptoms occur. Videx should be taken on an empty stomach or with water only. Videx should not be taken within 2 hours of taking Crixivan.
Epivir (3TC), Emtriva (FTC): These are remarkably free of side effects except for an occasional patient with nausea.
Ziagen (abacavir): This drug can cause a significant allergy in 3-5% of patients, with fever, abdominal pain, rash, nausea and/or muscle aches. If this happens call your doctor immediately. Ziagen is a component of Epzicom and Trizivir.
Combivir, Trizivir:Combivir is a combination of Retrovir and Epivir, Trizivir has Retrovir, Epivir and Ziagen (see above)
Viread (tenofovir): minimal known side effects thus far, other than gas or bloating.

Protease Inhibitors
Invirase/Fortovase (saquinavir): Most side effects are mild. These include mouth sores, diarrhea and an upset stomach. The medication should be taken with food.
Norvir (ritonavir): Norvir should be started at low doses and gradually increased to a full dose over 1-2 weeks. Common side effects include poor appetite, nausea, diarrhea, numbness around the mouth or a strange taste and weakness. Some of these side effects may feel severe. Additionally, Norvir interacts with many medications, particularly antihistamines and sedatives. Contact your doctor before taking any new medicines, even over-the-counter drugs. Norvir capsules should be taken with food. Many physicians are now using Norvir in low doses to raise the blood levels of other drugs in this class, allowing for fewer pills, more convenient dosing and reduced food restrictions.
Crixivan (indinavir): The most severe side effect noted with Crixivan is kidney stones, which develop in about 1 in 20 people. You should drink 6-8 glasses of water a day to prevent this while taking Crixivan. Nausea may also occur and there are drug interactions similar to Norvir (see above). Crixivan should be taken on an empty stomach or with a low-fat snack. Do not take Crixivan within 2 hours of Videx
Viracept (nelfinavir): Diarrhea is the most common adverse reaction to Viracept. It should be taken with food. As with Norvir, Viracept has significant interactions with many other medications. Consult your physician about these.
Agenerase (amprenavir), Lexiva (fosamprenavir):like Viracept, diarrhea and other GI problems are the most common side effect.Rash is not unusual.
Kaletra (lopinavir/ritonavir): Common side effects include diarrhea and rashes.
Reyataz (atazanavir): may cause jaundice (eyes turn yellow)

Non-nucleoside Inhibitors
Viramune (nevirapine) and Rescriptor (delavirdine): The most common side effect is a rash. Other potential side effects include headache, fatigue, diarrhea, nausea, fever, achiness and nervousness. Viramune can also lead to severe liver toxicity when first starting therapy.
Sustiva(efavirenz): Nervousness, dizziness, sleepiness or anxiety are common when starting in this drug, as is a rash. Pregnant women should not take Sustiva.

Fusion Inhibitors
Fuzeon (enfurvitide, T20): This drug is given by injection twice a day. The only common side effect is inflammation at the injection site.

Bactrim, Septra (Trimethoprim-Sulfamethoxazole): These medications are used to treat and prevent Pneumocystis carinii pneumonia. These are sulfa drugs and about one third of patients with HIV will develop an allergic reation to these medications (usually a rash and/or fever). Some people may also develop nausea with them.

Why do I have to take so many pills?
What we have learned over the last year is that the only way to control HIV effectively is to keep the viral load at very low levels. In order to do this, we usually need at least 3 drugs, sometimes more. Current preparations often allow for treatments using only 2-4 pills a day, but if these don't work then a larger number of pills is usually needed. This can mean taking anywhere from 10 to 20 antiretroviral pills each day, in addition to any other pills you are taking. Unfortunately, doing anything less than this usually results in HIV becoming resistant to the drugs. We understand that this is difficult to do, but your life depends on taking all the medicine as prescribed, all the time. Recent improvements are the development of combination tablets (Trizivir) and many once daily medications such as Sustiva, Viread and Videx.

How much do these drugs cost?
Antiretroviral medications are very expensive. Drugs like Retrovir, Zerit and Epivir will usually cost about $150-$180 each month for each prescription. The protease inhibitors (Crixivan, Invirase, Norvir and Viracept) cost between $450-$600 each month. 3 and 4 drug combinations will usually cost between $8,000 and $12,000 for a year of therapy. Very few people can afford these drugs without an insurance plan to cover most of the cost. Before getting your prescription filled, review your insurance policy to see how much it will cost you. Even a 20% copayment may mean $2000 a year in out of pocket expenses. If you cannot afford the medication, you may be eligible for various assistance programs. Most drug companies will provide the medicine free of charge to those who cannot afford it. Many states such as Florida have an AIDS Drug Assistance Program as well. If you can only afford some of the medicine, but not all of it, wait until you can get a source of funding for the rest. Taking only some of the medicine your doctor prescribes may actually enable HIV to become resistant to the drugs.

What about alternative treatments?
You may hear about many treatments for HIV that are not within the mainstream of modern medicine. Many of these are herbal remedies such as Ginkgo tea or Cat's Claw. Others may be drugs that are used in other countries but not approved in the U.S. Most of these treatments are harmless, but some have potentially dangerous side effects, especially those obtained outside the U.S., in which the actual content of the substance cannot be guaranteed. St. John's Wort, often used for depression, has been shown to reduce blood levels of Crixivan and other drugs, making them less effective. None of them have any proven benefit in fighting HIV. You should consult with your doctor before taking any of these treatments to be sure they are safe.

What about experimental treatments?
Unlike homeopathic remedies, experimental or investigational treatments involve taking medication which has shown promise in treating HIV or its complications in the laboratory. These medications have gone through a rigorous evaluation by the FDA for safety and are now being evaluated for their effectiveness. By enrolling in these investigational studies, it helps advance our ability to fight HIV. You may be asked to be in a blinded study, in which you will not know which medication you are receiving. These studies produce the most useful results, but not everyone is comfortable being part of an experiment. Other studies are called open label studies, in which the patients know which drug they are taking, but still need to meet the requirements for the study and sign a consent form.

Can I still work?
Your ability to work depends on your clinical symptoms, not whether or not you have HIV or if you have a low CD4 count. If you have no symptoms associated with HIV infection, then there is no reason to stop working. Many people with mild to moderate symptoms will often continue to work, but it depends on the type of job and the advice of your doctor. Many others who were disabled by HIV have improved enough with therapy to be able to resume work. If you are a health care worker you should contact your organization's Infection Control practitioner for specific recommendations.

Should I follow a special diet?
You should follow a sensible, balanced diet, consuming a variety of fruits, vegetables, meats, dairy and grain products. Vitamins may be helpful as a supplement to a balanced diet, not as a substitute. If weight loss is a problem, you do not need to worry about cholesterol or fatty foods, they will actually help you to maintain your weight. If you develop problems with diarrhea or a poor appetite, ask your doctor about other nutritional supplements that may be helpful. If your CD4 count is low, indicating impaired immunity, you should avoid using wooden utensils and cutting boards, as they are more difficult to clean properly. You should be careful when handling eggs and poultry because of the risk of Salmonella infection. All beef should be cooked thoroughly to avoid infection with Toxoplasma.

Some of the drugs used to treat HIV often cause high cholesterol levels. If this happens your doctor will usually advise a low cholesterol diet. This means cutting down on red meat, eggs, cheese and fried foods, switching to skim milk and increasing the proportion of fruits and vegetables in your diet.
 
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Who can I ask for further help or information?

South Florida Resources:

 AIDS Drug Assistance Program - available in Florida through your local health Department

Body Positive Resource Center

305-576-1111

Broward House

(954) 522-4749

 People With AIDS Coalition

Positive Connections

305-891-2066

Positive Connections Web Page

(Support and Resource Center for HIV+ Heterosexuals)
 
 South Florida AIDS Network

National Resources:

 National AIDS Hotline

Internet Resources

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