Detecting and Treating Other Diseases
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Even before HIV causes AIDS, it can cause health problems. Learning about how the virus can affect your body and getting care early, before health problems worsen, can help you live longer and have fewer health problems.
This page is a guide to understanding HIV and getting the right care as soon as you can. You can also share this information with family members and friends so they can learn more about HIV.
This page will tell you about some of the problems you will probably have to face and suggests questions you may want to ask your doctor, nurse, or other health care provider. Asking these questions will help you get the information you need to make decisions about your own health care.
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Learn as much as you can about HIV. Finding out you have HIV infection can be frightening and confusing. Here are some questions you may want to ask your health care provider: Having HIV means that you can give HIV infection to someone else through unprotected (unsafe) sex or sharing needles or works if you inject drugs. Be sure to ask your health care provider how you can keep from spreading HIV.
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Your HIV status is very personal, and telling other people that you have HIV infection may be one of the hardest things you will ever have to do.
When you first find out you have the virus that causes AIDS, you may feel sad, depressed, ashamed, or afraid. Telling other people about your HIV infection may mean that you will get more support and help from others, but it can also lead to problems.
Local or state laws may require that your health care provider report your HIV status to the health department. Otherwise, your HIV infection should be kept confidential, unless you decide to talk about it. Ask your doctor about the laws in your state. Your health care provider can help you decide whom to tell and help you tell them once you have decided to do so. Some of the people you may want to tell include:
You should talk with your sex partners about using condoms for safe sex and about the risks of having a baby with HIV. If you inject drugs, you will want to discuss the danger of sharing needles or works.
You may want to talk with members of your family about how your condition might affect them. You may also choose to tell your co- workers, neighbors or members of your church, and if you are a student, people at school, such as the school nurse, administrators, teachers, and classmates. Some people with HIV choose not to talk about their health, and that's all right, too. It's your choice.
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Possible Benefits
Possible Risks
Although the risks of sharing information about your HIV infection with others may seem to outweigh the benefits, remember that these are only risks and might never happen.
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If you have HIV infection, you may feel, look, and act just fine. But you need to take good care of yourself as soon as you find out you have HIV--this is the key to delaying the onset of more serious problems.
Try to keep a positive outlook. Hope is very important. Everyday there are new drugs and treatments for HIV that may help you. Each time you visit your doctor, be sure to ask about new treatments and clinical trials (research studies) in which you might take part.Try not to worry. Worrying can lead to stress, and stress can weaken your immune system. Take steps to reduce stress. Activities that may relieve your stress include breathing exercises, leisure walks, reading, and community activities. Ask your health care provider about ways to cope with worry and stress.
See your doctor often. Don't wait until you get sick. The following hints may help you stay well longer:
Tell your health care provider right away if you have numbness, sores in your mouth, changes in your eyesight, or shortness of breath.
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One of the blood cells infected by HIV is the CD4 cell (a special T cell). Its job is to defend your body from invaders such as viruses. The number of CD4 cells in your blood shows how strong your immune system is.
A test called the "CD4 cell count" is used to check on the progress of HIV infection. Your health care provider will probably ask you to have blood tests every few months so that your CD4 cell count can be used to show when to start medicines.
As long as your CD4 count is over 600, you will need to have it tested about every 6 months. If your CD4 count drops below 500, your doctor may suggest testing your blood more often and may start you on medicine to slow HIV
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Your doctor should talk with you about the risks and benefits of starting treatment with drugs for HIV. AZT, now called ZDV (for zidovudine), is the most widely used drug for HIV. If ZDV does not work or causes side effects (for example, sleep problems, leg cramps, headaches, nausea, diarrhea, or anemia), your doctor may give you didanosine (ddI) or dideoxycytidine (ddC). Be sure to tell your doctor about any side effects you may have from ddI or ddC, such as belly pain or numbness in your hands or feet.
Remember, the treatments for HIV are changing rapidly, so be sure to ask your doctor if there are new treatments.
If your HIV infection worsens, you will be more likely to have other infections that take advantage of your weakened immune system. If your CD4 cell count falls below 200, or if you have had pneumonia or other symptoms, your doctor will probably recommend that you start taking trimethoprim-sulfamethoxazole or TMP-SMX (Bactrim , Septra , and generic products) to prevent the most common of these infections, Pneumocystis carinii pneumonia, or PCP. Most people have no problem with TMP-SMX, but if you develop a rash or severe stomach problems, stop taking the medicine and call your doctor right away to discuss other treatments.
HIV and HIV-related illnesses vary from person to person. Some people have been living with HIV for many years. Others become sick soon after their diagnosis. Your medical care plan will be designed especially for you and may differ somewhat from the care described in this booklet. Here are some questions you should ask your doctor, nurse, or other health care provider:
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Tuberculosis
Tell your health care provider if you think you have been exposed to someone with TB.
If you become infected with the bacteria that causes TB, your doctor may give you the medicine, isoniazid (INH), which you will need to take once a day, every day, for a full year, even if you feel fine. Your doctor may also recommend that you take pyridoxine, a form of vitamin B6, each day to help reduce side effects from isoniazid. Be sure to tell your doctor about any side effects you may have from the medicine, such as nausea, vomiting, loss of appetite, tiredness or weakness, skin rashes, or fever.
Instructions for taking medication for TB infection can be confusing. Work closely with your health care provider to be sure you complete your treatment.
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Syphilis
You should tell your doctor about your full sexual and medical history. Some of the questions you may want to ask include:
Your doctor may give you blood tests to learn if you have syphilis and to see how far it has progressed. You also may need other tests. You should be tested for syphilis anytime you think you have been exposed to an STD.
If you have syphilis, you should tell your sex partners or persons who have injected drugs with you. Your health care provider or a health department worker can help you do this and tell you whether the law in your state requires that your sex partners be notified.
Penicillin shots are the usual treatment for early syphilis. For more advanced disease, you may require intravenous (IV) penicillin and perhaps a hospital stay. If you are allergic to penicillin, you may need to see a specialist.
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Mouth and Eye Problems
Your doctor can treat most of your HIV-related mouth and eye problems. Sometimes you may also need to see a special dentist or an eye doctor.
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Pap Tests for Women with HIV
If your Pap test is abnormal, you may need to have a colposcopy. In this special type of examination, the doctor uses an instrument to get a close-up view of the cells and tissues of the vagina and cervix
Because HIV weakens the body's ability to resist infections, you are at special risk for infection with the germ that causes tuberculosis (TB). Even if you become infected with this germ, proper treatment can keep it from turning into active TB. Be sure to ask your doctor, nurse, or other health care provider:
Syphilis is a sexually transmitted disease (STD). It often occurs with HIV infection but can be hard to recognize and treat in persons who have HIV. Untreated syphilis can cause severe nerve, heart, and blood vessel damage and even death.
Mouth problems, such as candidiasis (thrush), and eye problems are some of the signs of HIV infection. Your health care provider should check your mouth and eyes at each visit. Be sure to:
Pap tests help detect cancer of the cervix (mouth of the womb) at an early stage. Women with HIV are more likely to have abnormal Pap smears.
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If you become pregnant and decide to have your baby, the most important thing you can do is get good prenatal care. The chances of passing HIV to your baby before or during birth are about one in four, or 25 percent, for each pregnancy.
As a general rule, treatment for HIV infection in pregnant women is the same as for others who are not pregnant. You should have a Pap test during your pregnancy, and your doctor will probably recommend a CD4 count as soon as prenatal care begins. Depending on the results, you may not need another CD4 count during your pregnancy.
If you become infected with the TB germ while you are pregnant, your doctor can give you medicine, and chest x-rays may be used with proper precautions.
If you are pregnant and have syphilis, you will need special care. Babies born to women with untreated syphilis can become seriously ill or die. Here are questions to ask if you are HIV-positive and pregnant:
Your immune system may work differently during pregnancy, so your doctor will watch you closely. Here are some questions you may want to ask:
After birth, your baby should be tested regularly for HIV infection, whether or not HIV is present at birth. The baby also should be tested for syphilis, even if you were treated during pregnancy. Because HIV infection can be passed through breast milk, you should not breastfeed your baby.
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If you are thinking about avoiding pregnancy or becoming pregnant, you should talk with your health care provider about the issues that are important to you, such as:
Remember, although HIV-related illnesses can be treated, as yet there is no cure for HIV. This means the infection, and likely AIDS as well, will be a part of your family's future.
If you are weakened by HIV, both you and your unborn baby will be at greater risk for other serious infections. Because you have HIV, both you and your baby will need care. You will need to plan for the care of your child if you get sick.
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A person or family living with HIV may need many kinds of support. Your health care provider and your local health and social services departments can help you find the support you need, including someone to:
Many people living with HIV feel better if they can talk with other people who also have HIV. Here are some ways to find others with HIV:
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There are many sources of information about living with HIV. Look in the telephone book for:
Some hospitals, churches, and the American Red Cross, as well as HIV and AIDS organizations, offer programs and sponsor support groups that may be listed in a special directory or your newspaper. Ask your librarian about newsletters and other printed materials.
Toll-free national hotlines and information clearinghouses can send you free publications and give you the latest news about drug-testing and clinical trials.
Here are some telephone numbers to help you get the information you need:
General Information
TDD Service for the Deaf (800) 243-7889
National AIDS Clearinghouse (800) 458-5231
HIV/AIDS Treatment Information
AIDS Treatment Data Network (212) 268-4196
Project Inform (800) 822-7422
Clinical Trials Conducted by the National Institutes of Health or Food and Drug Administration-Approved Trials:
Social Security Disability Benefits
Statement of Purpose
To order another copy of the booklet, call the National AIDS Hotline toll-free at (800) 342-AIDS, or write to:
AHCPR HIV Guideline
To order copies of AHCPR-sponsored guidelines on other topics, call (800) 358-9295 (for callers outside the U.S., only: (301) 495-3453) weekdays, 9 a.m. to 5 p.m., Eastern time, or write to:
Agency for Health Care Policy and Research
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National AIDS Hotline
American Foundation for AIDS Research (800) 39AMFAR (392-6327)
AIDS Clinical Trials Information Service 800-TRIALS-A (874-2572)
For confidential assistance in applying for social security disability benefits, call the Social Security Administration at (800) 722-1213. You also may request a personal earnings and benefit estimate statement (PEBES) to help you estimate the retirement, disability, and survivor benefits payable on your social security record.
Understanding HIV: Consumer Guide 7a
Understanding HIV: Consumer Guide 7a was prepared by the Agency for Health Care Policy and Research as a handbook of HIV/AIDS . The CDC National AIDS Publications Clearinghouse is the Agency's comprehensive reference, referral, and distribution service for HIV/AIDS information.
CDC National AIDS Clearinghouse
P.O. Box 6003
Rockville, MD 20849-6003
Publications Clearinghouse
P.O. Box 8547
Silver Spring, MD 20907