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AFTER YOU'VE TESTED POSITIVE FOR HIV

DAY ONE AFTER YOU'VE TESTED POSITIVE FOR HIV

Adapted from original prepared for the ACE directory by Al McKittrick

A positive HIV antibody test can ruin your whole day or your whole week. It could be the hardest news

that you’ve ever had to deal with. But don’t despair! It’s scary, but it is not a death sentence. Today,

many of us with HIV are alive and well many years or after becoming HIV positive. There is still not a

cure, but with all we’ve learned over the course of the epidemic, and with the development of new

drugs, HIV is becoming a chronic manageable disease. But the real work is up to you. Getting

informed and taking charge of your health will help you make the best of your situation and the ACE

directory you are holding in your hands can be very helpful in accomplishing that goal. You may feel

very alone right now but you are not. There are over 11,000 people in the State of Colorado living

with HIV and a lot of agencies to assist us in managing this disease. Welcome to our community.

Before you get started, here are just a few basic things to remember.

#1. You need to have a doctor who is a specialist in HIV. Studies have shown that your

chance of survival is much better if you have a doctor who treats people living with HIV on a daily basis.

HIV treatment is constantly changing and a primary care physician may not have time to keep up on the latest

developments, so find a specialist. You’ll find them in the Medical Services Referral List (page 20). Have

your regular doctor refer you to a specialist for your HIV care needs.

#2. Be patient with yourself. Start thinking about getting healthier. Reducing or stopping

your use of alcohol, nicotine and recreational drugs will help you stay healthier longer. So will eating

nutritiously and adding vitamins and exercise to your daily life. Don't beat yourself up about being

HIV+; it will only keep you from getting on with what you need to do to survive. A few days of feeling

sorry for yourself is OK but a couple years of denial is not. You can seek out help in the Counseling

Services Referral List (page 33). If you need help quitting or limiting alcohol or drug use, you’ll find

support groups and assistance in that same list. Seek out hugs and support from friends and family. Be

careful who you discuss your status with. It should be on a need to know basis (doctors, nurses, sexual

partners, AIDS service organizations). Be aware that discrimination against someone who is HIV+ is forbidden

by the Americans with Disabilities Act.

#3. Don’t put yourself or others at risk. When you are HIV+, you can be re-infected

again and again if you have a partner who’s positive or if you share needles with someone who is also

HIV+. This can just make treatment more difficult and lessen your chances of survival. You of course do

not want to give HIV to someone who is not positive, so safer sex needs to become your mode of conduct.

Mothers who are HIV+ should not breast feed their children. There are many organizations listed

in this book that can give you information on safer sex and how to keep from infecting anyone else.

#4. Don’t worry about money. You have enough to worry about when you are first diagnosed

with HIV. You don’t need to add to your stress by worrying about how you’ll pay for drug treatment

or doctor’s appointments. Whether or not you have insurance or a job, you can get quality HIV

care in the State of Colorado. Assistance with housing, food and other necessities is also available. A

case manager can help you with many of these concerns and can connect you with the programs you

need. You’ll be able to find a case management agency in your area, and information about what

services they offer through this directory. They include Colorado AIDS Project, Boulder County AIDS

Project, Western Colorado AIDS Project, Southern Colorado AIDS Project), Northern Colorado AIDS

Project, Servicios de la Raza, and Empowerment.

#5. Your best weapons in the fight against HIV are attitude and knowledge. If

anyone tells you they have a cure for HIV, don’t believe them; there isn’t one. If any one tells you that

HIV doesn’t cause AIDS, or that the HIV test is a fraud and you have nothing to worry about, don’t

believe them either. Be wary of outdated information. Changes in treatment of HIV can develop rapidly

so get current information from reputable web sites and publications that you can find listed in this

directory. Learn as much as you can about HIV but do it at your own pace. Ask questions of your doctors

and care providers; remember they work for you. You tested positive. Your test result is a piece of

knowledge and knowing about the disease is a powerful weapon. Now that you know, you can do

something about it.

HIV AND THE IMMUNE SYSTEM

HIV stands for Human Immunodeficiency Virus. A virus is an organism that has to be inside some other

cell in order to multiply. In the case of HIV, the virus attacks white blood cells in your immune system,

specifically your CD4 t-cell. This is not good news for your immune system because it is the CD4 t-cell

that would normally lead the attack against HIV. And it does. From the time you are infected, the body

is very busy making millions of CD4 cells to combat the millions of new cells that the virus is making.

This battle goes on for years until slowly the virus overwhelms the immune system and the body loses its

ability to fight off a variety of illnesses, called opportunistic infections.

This gradual destruction of the immune system doesn’t happen the same way in everyone, or at the

same pace. In a small percentage of people, infection with HIV leads to destruction of the immune system

very rapidly, in just a few years. But on average, even without drug treatment, most people remain

well for 7 - 10 years before experiencing the first serious symptoms. That’s why it’s a good thing that

you know now that you are positive, because you can slow or prevent the destruction of your immune

system with medications and therapies.

MONITORING YOUR HEALTH

There are two kinds of tests that can measure the degree to which your HIV progresses.

1. A t-cell count or CD4+ count lets you know how many t-cells you have. A normal count for people

not infected with HIV is usually 800-1200. An HIV+ person who has progressed to AIDS will have a

count below 200. If your count is below 200, your doctor should recommend that you take certain

prophylactic” drugs (usually antibiotics) to prevent you from getting some of the more serious illnesses

and infections that people with suppressed immune systems are at risk for.

2. A viral load test shows how much virus is floating around in your blood. Results can range from

undetectable (under 25 copies of the virus, is a good result), on up to a count in the millions (not good

news).

You want to get a high t-cell count and a low viral load, but there are treatment options for all combinations

of t-cell counts and viral loads. Doctors and patient advocates recommend you get both tests

every three months.

TREATMENT OPTIONS

If you know that you were recently infected, (in the last few weeks or months), you should consider starting

therapy immediately. Recent studies have proven that therapy started in the early stages of HIV

infection can dramatically reduce the destruction that HIV causes the immune system. If you have been

infected for a longer period of time, then you will want to decide with your physician when would be a

good time to initiate drug therapy. These days we have 24 different drugs in five different classes that

attack the virus. Some of the drugs are combined together in one pill. When you start drug therapy, you

should be using at least three of these drugs at the same time. Optimally you want your drug therapy to

suppress the virus to “undetectable”, so that your immune system has a chance to raise your t-cell count

back towards normal levels. Any drug has side effects and HIV drugs are no different. After starting a

drug regimen you will want to visit your doctor on a regular basis to help monitor your progress and

watch for possible drug toxicities. The whole objective is for you to stay as healthy as possible so that

you can be here to enjoy life and take advantage of all the advances in treatment that keep coming.

Stay well!