Title: Living with HIV: A Guide for Seropositive People
Author: Danielle Hain
Publisher: Do It Now Foundation
Publication Date: April 2009
Catalog Number: H106

..Beyond HIV

News about
AIDS — and the human immunodeficiency virus that causes it —
has never been particularly good.

In fact, since
the disease surfaced in 1981, the HIV story has been mostly
discouraging, when it’s not absolutely tragic.

Today, that’s

New drugs and
drug-combination therapies have produced remarkable results even
causing a complete remission of AIDS-related symptoms and HIV
viral load measurements below the point of detectability.

And while the
new drugs aren’t a cure — HIV-positive people have to keep taking
them indefinitely or they lose their effectiveness — they’re
great news for seropositive people.

On the other
hand, the drugs — a combination of protease inhibitors taken
with anti-HIV drugs AZT and 3TC — don’t work for everyone. In
fact, researchers estimate that they don’t work or produce unacceptable
side effects in fully 15 percent of HIV-positive people.

But even that
news isn’t necessarily as tragic as it might seem.

Because others
with HIV have survived for years — decades even, almost, at
this point — without progressing to full-blown AIDS, and without
suffering serious decline in the quality of their lives. And
we’ve learned some things about what works and what doesn’t when
it comes to living with HIV.

That’s why
we’ve put together this pamphlet.

In it, we’ll
discuss some of the recent advances in HIV research and treatment
that are raising the odds of long-term survival for those affected.

We’ll outline
a three-part program for living with the infection, based on
formal research findings and the informal, practical discoveries
of long-term survivors from around the world.

We’re not even
going to try to list all of the treatments currently being tried
and tested against AIDS. But we will point out a few directions
that are proving helpful for many — and lifesaving for some.

Because while
there’s still no true cure for AIDS — or a vaccine to block
its spread — here is hope today for a longer, healthier life
for people with HIV.

And that’s
not only good news — it’s great news. And it’s way overdue.

..The HIV Spectrum

One important
thing to keep in mind when discussing HIV is the idea that it
is a spectrum disease.

That means
that everyone infected with HIV is infected by the same virus,
but they may have different symptoms at different stages — or,
indeed, display no symptoms at all for years after exposure.

The syndrome
begins with an initial infection by the virus, which attacks
cells in the body’s immune system.

Early infection
usually lasts one to eight years, and is often symptom-free.
So unless they’re tested, people in this stage may not even realize
they are infected.

Initial symptoms
— swollen lymph glands, oral thrush (a white coating or spotting
in the mouth), and possible memory problems — may appear three
to eight years following infection and gradually worsen.

AIDS itself
is the final, and most serious, stage of HIV disease. It usually
begins 8-12 years after infection, and involves severe immune
system breakdown and the onset of rare illnesses, such as Pneumocystis
carinii pneumonia and Kaposi’s sarcoma.

Experts aren’t
completely sure which factors determine how quickly an infected
person passes through the stages or why so many HIV-positive
people stay symptom-free for so long, but overall health and
exposure to other sexually-transmitted viruses and infections
seem to play important roles.

Still, without
treatment, the majority of infected people do develop AIDS within
10-12 years.

But researchers
have also discovered that progression to AIDS can be slowed —
perhaps even stopped altogether — by starting treatment as early
as possible.

..Step 1: Getting Tested

Early diagnosis
and treatment are important first steps in containing HIV infection.

It begins with
testing. The most common test for HIV is the enzyme-linked immunosorbent
assay (ELISA for short), which detects antibodies to HIV in the

Other tests
are used to confirm positive results. The tests are usually offered
at no charge at public health clinics and, in most states, results
are confidential.

Who should
get tested? You should if you’ve:

  • had sex with someone who’s HIV-positive
  • had sex with multiple partners
  • used needles to shoot drugs
  • had sex with an IV drug user
    or a sexual partner of an IV drug user

Because people
with early-stage AIDS feel healthy and often show few signs of
being sick, the only way to be certain if you have it or not
is to be tested.

..Step 2: Getting Treated

If you’re positive
that you’re positive, your prospects are better than you might
imagine. Because treatment today is light-years ahead of where
it began.

The best news
is the expanding arsenal of new drugs that have been approved
for treating AIDS-related symptoms — and to prevent their onset.

In combination
with long-time anti-HIV veterans AZT (RetrovirĀ®) and 3TC,
several protease inhibitors — including saquinavir, ritonavir,
nelfinavir, and indinavir — are being used to slow the disease
process and shore up immune system response.

The drugs are
expensive (up to $20,000 a year) and don’t work for everyone,
and they have to be taken on a precise daily schedule, or HIV
cells can develop immunity to them. But they dramatically improve
the health and long-term prospects of most seropositive people.

And while many
of the anti-HIV drugs are toxic, dosage can be adjusted to combine
the efficacy of high-dose treatment without intolerable side

Since the new
drug therapies are so new, our understanding of them — and our
awareness of potential problems associated with them — is expanding
almost daily.

That’s why
it’s important to get treated early and closely follow the treatment
regimen laid out for you by your doctor.

What else can
you do?

Keep yourself
healthy. Along with your medical care plan, start a self-care
plan aimed at shoring up your immune system and preventing further

..Step 3: Getting Healthy

That self-care
plan should involve making any lifestyle changes you need to
make to promote overall health and well-being: making sure you
have a balanced diet, plenty of rest, and regular exercise and

Avoid doing
the sorts of things that put a strain on your immune system —
acquiring other sexually-transmitted diseases, for example, or
using recreational drugs.

If you’re hooked
on drugs, get yourself into a detox or methadone program.

If you only
consider yourself a “recreational” drug user, consider
doing something else for recreation.

Alcohol, heroin,
cocaine, and other chemicals inflict their own forms of havoc,
even among the healthy, and may speed up the progression to AIDS.

If you haven’t
done it already, make sobriety a cornerstone of your healthy-living,
HIV-survival strategy.

Your immune
system is balanced too precariously to take any unnecessary tilting.

..Getting On With Your Life

Let’s face
it: Finding out you’ve been exposed to HIV is no fun. For
some people, it’s a disaster. They take the news hard and
die a little every day.

For others,
though, it’s something else altogether. They take the news as
an ultimate challenge to get busy with their lives and the lives
of the people they care about — in spite of the way they may

it’s this group that contains virtually all of the long-term
AIDS survivors identified thus far.

It’s a special
group of people, united by many of the approaches we’ve discussed
and a common theme: That life is more important than a disease
that can only take life away.

They know a
secret that’s as old as time and as timely as tomorrow’s headlines:
That living without purpose is giving up.

And with AIDS,
giving up can be a real killer.

For information
on new AIDS treatments, contact:

  • Project Inform: 1-800-822-7422;
    in Calif., 1-800-334-7422
  • U.S. Food and Drug Administration:
  • The National AIDS Hotline 1-800-342-AIDS

..Sidebar | Step
1.5: Getting Help

The critical
first step in any plan for living with HIV is to find a knowledgeable
doctor or clinic that you feel comfortable with and confidence

Start with
your family doctor, if you have one, or contact an AIDS helpline
for referral to a specialist in your area.

After that,
get serious about getting on top of your life and your infection.

HIV isn’t a
winning ticket in life’s lottery, but it’s not an automatic death
sentence, either. Thousands of people have lived with HIV for
years, and some say they didn’t really start living until they
got their test results back and decided to begin right then and

What they also
started doing, then and there — or shortly after — was to take
care of themselves.

You should,
too. Have your doctor show you how.

..Sidebar | Helping
Yourself: Doing It with Diet

Diet plays
a main role in any HIV survival plan. That’s because people with
AIDS are vulnerable to food-borne micro-organisms. And food-related
infections can be life-threatening.

According to
the U.S. Centers for Disease Control, people with AIDS are 20
times more likely to contract salmonella, a contaminant of under-cooked
poultry and eggs, and 200-300 times more likely to develop listeria
infections from poultry, meat, and raw fish. Since animal foods
— including cheese, milk, and eggs — are a main source of food
infections, experts offer the following advice:

Eat meats well-done. Use a thermometer
to insure that poultry, fish, and other meats are well-done,
and pre-cook grilled meats. Avoid sushi, shrimp, and other raw

Cook eggs thoroughly. Avoid dishes
containing raw eggs, including Hollandaise sauce, egg nog, and
Caesar salad.

Drink pasteurized milk. Raw,
unpasteurized dairy products can also be a problem. Better keep
your distance.

Clean utensils after handling
raw meat. Infectious organisms can spread to other foods and
dishes, and to uncovered cuts or sores on the hands.

Also, you may
want to consider soy and vegetable protein substitutes for meat,
milk, and cheese that are available at health food and grocery

For more information, contact
the National AIDS Clearinghouse at 1-800-458-5231.

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on drugs, behavior, and health by Do It Now Foundation.
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