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AIDS-Related MAC
How to Help Yourself

January 1994

What is MAC?
Many people with HIV get sick with a disease called MAC. This page explains what MAC is. It also talks about medicines to help prevent and treat MAC disease -- and how you can help yourself stay healthy.

MAC is short for Mycobacterium avium complex, the germs that cause MAC disease. People get MAC disease when their immune systems are weakened.

MAC germs are all around us -- in the air, water, and soil. People with healthy immune systems don't get sick from MAC germs. People with HIV have weakened immune systems and can become very ill from this infection. Doctors can test for MAC germs in samples of your blood, urine, sputum (spit), or affected body tissues.

Symptoms of MAC
MAC can cause many different problems, but it is most serious when it spreads to organs like the bone marrow, liver, and spleen. These organs keep our blood healthy and in good supply. When MAC spreads through the body, it can cause the symptoms that are listed below:

Symptoms of MAC

  • fever
  • night sweats
  • weight loss
  • tiredness
  • stomach pain
  • diarrhea
Medicines Can Help
Medicines can be used to:
  • Keep your immune system strong. You are less likely to get MAC when your immune system is strong. To keep you healthy, your doctor or clinic nurse may ask you to start taking medicine as soon as you find out that you have HIV.

  • Prevent MAC disease. Even if you feel well, your doctor may want you to take medicine to help delay or prevent MAC disease. If you begin taking medicine to prevent MAC disease, you may need to keep taking it to stay healthy.

  • Treat MAC disease. Several medicines are used to treat MAC disease. If you have MAC disease, you may need more than one kind of medicine. Combining two or more kinds of medicines makes them work better.
How To Help Yourself

Go to a clinic or doctor for regular checkups. That way, your doctor may spot problems early and help you right away.

Keep your immune system strong. You can help keep your immune system strong by eating healthy foods, getting enough rest, exercising, and not using alcohol, cigarettes, and drugs.

Follow your care plan. If you get MAC disease, you will be treated with special medicines. You may need to take medicine even if you feel well. If you stop taking your medicine before you should, MAC can come back, and the drugs may not work as well as the first time. It is important to take your medicine as your doctor prescribes (at the right times and in the right amounts). If you have any questions, ask the clinic staff or your doctor. Create a schedule like the one below to help you remember:

Name of medicine: ____________________

Time of day to take: ____________________

How much to take: ____________________

How long to keep taking: ____________________

Tell your doctor or clinic nurse about any new symptoms or problems. This will help the doctor or nurse decide which tests you need and which medicines are best for you. Most people taking medicine for MAC disease begin to feel better within 4-6 weeks.

Your medicines may also cause side effects. Your doctor may have to change the amount or type of medicine to reduce your side effects.

Remember:

  • Take your medicines as your doctor prescribes.
  • Have regular checkups.
  • Report any new symptoms or side effects from your medicines.
Research: Hope for the Future
Many drugs can be used to treat MAC disease, but scientists are still looking for better ways to prevent and treat this disease. Today, many drugs are being tested in research studies. You may be able to help test one of these drugs. If you take part in research, you may help yourself -- and others with HIV.
To Find Out More About MAC
Here are some numbers to call to learn more about MAC disease and how to help yourself.
  • 1-800-CDC-INFO
    (1-800-232-4636)

    You can get more information about MAC disease. You can also find out about treatment centers and other help.

  • 1-800-TRIALS-A
    (1-800-874-2572)

    You can find out about testing new drugs. There may be a center near you where you can volunteer for studies that are taking place.

  • 1-800-AIDS-NIH
    (1-800-243-7644)

    Call Monday through Friday from 12:00 p.m. to 3:00 p.m. (Eastern Time) to find out about studies being done at the National Institutes of Health (NIH) Clinical Center.




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