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Living with HIV | ![]() |
Written and funded by Roger Spitzer, MD. Updated 7/01/2005
Click to
start at the beginning.
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.
![]() 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. |
![]() 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. |
![]() 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. |
![]() 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.
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.
Click here for Advanced Discussion
Topics
Who can I ask for further
help or information?
AIDS Drug Assistance Program
- available in Florida through your local health Department
North Dade Health Center | 305-620-3735 |
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305-576-1111 |
(Dedicated to empowering and healing the HIV+ Community by providing education and support services) |
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(954) 522-4749 |
Non-profit organization with case management, assisted living, education and drug-dependency programs for those with HIV |
People With AIDS
Coalition
Dade: | 305-573-6010 | Dade PWAC Web Page | |
Broward | 954-565-9119 | Broward PWAC Web Page | |
Palm Beach | 407-697-8033 |
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305-891-2066 | Positive Connections Web Page |
(Support and Resource Center for
HIV+ Heterosexuals)
South Florida
AIDS Network
Dade | 305-585-SFAN |
Broward | 954-467-4532 |
National AIDS Hotline
English | 1-800-342-2437 |
Spanish | 1-800-344-7432 |
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AIDS Education Global Information System: Searchable HIV knowledge base |
AIDS Treatment News: Latest information on new and existing treatments |
Alternative/Nontraditional Treatments of HIV |
Broward Regional health Planning Council - click on link to HIV Services |
Critical Path AIDS Project : Lots of great links to HIV sites, alternative treatments, mailing lists. |
HIV InSite: Lots of information on all aspects of HIV from the Univ. of California at San Francisco |
AIDS.org Information on HIV, People with AIDS |
International Association of Physicians in AIDS Care: Journal articles on HIV care. |
Merck HIV/AIDS Infocentre: HIV Information from the makers of Crixivan- great graphics |
Miami-Dade HIV/AIDS Partnership | |
The Body: Multimedia HIV Information |
Other Infectious Disease links: Includes access to Medline and AIDSline |
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