HIV: MEDICAL TREATMENTS-THE RANGE OF AVAILABLE THERAPIES

July 24, 2011

In the early years of the AIDS epidemic, medical treatments could do little except relieve unpleasant symptoms. As researchers understood more about HIV—how it infects, how it multiplies—they began to find drugs that slow the infection, and even to understand how to custom-build drugs to attack HIV. The result of their understanding was and continues to be a rapid succession of new drugs to treat HIV itself.     We now know that certain drugs will delay the development of AIDS. We also know that certain vaccines and antibiotics will delay or even prevent the opportunistic infections that define AIDS. These drugs and vaccines are part of traditional medicine.     The medical care of people with HIV infection can be divided into traditional medicine and alternative medicine. Traditional medicine is traditional to us in the West—in the United States and the Western world—and is based on specific scientific standards. Alternative medicine has diverse forms: some borrow heavily from” Eastern (Chinese, Japanese, or Indian) philosophy; some use methods based on the mind-body interaction; and some are based on nonapproved drugs or diets or other treatments that, measured by the standard yardstick of the science of medicine, have no established merit.     Nearly all people with HIV infection receive traditional medical care. As many as a third of the people with HIV infection receive some form of alternative treatment as well. Both traditional and alternative medicine make the same claims: the treatments kill HIV or prevent HIV from reproducing, or strengthen the immune system, or relieve symptoms. People with HIV infection hearing these conflicting claims are understandably confused.     The first section discusses the drugs of traditional medicine and their side effects, and—another source of concern for people with HIV infection—how to pay for them. The next section discusses how drugs are tested to find out whether they are useful and how best to use them. The last section is on alternatives to traditional medicine—treatments that have not been and are not likely to be tested—and whether they are likely to help or be harmful.*175\191\2*

HIV INFECTION AND ITS EFFECTS ON THE EMOTIONS: FATIGUE AND ACCOMMODATION-ACCOMMODATING TO FATIGUE

June 20, 2011

Fatigue is an integral part of this infection. Whether its cause is psychological or physical, fatigue cannot be ignored. First, talk to your doctor: some medications can counter fatigue. The best way to deal with fatigue may be to accept it and go on from there. Decide what you want to do most, be sure it is possible, plan it out, and pace yourself. When Dean wants to go to a concert on Thursday, he begins resting on Tuesday and takes off Friday and Saturday. Lisa’s husband stayed in the community theater but tried out only for small roles. Steven gets up late, goes to work late, and goes home early. Dean kept his job but cut back his hours and tried to have meetings in his office rather than in offices across town.     Try to plan things that can, if necessary, be changed or postponed. Dean’s long-time partner helps him in this: “We deal from day to day. We don’t look ahead because the illness is so powerful and changes at any time. Plans for one day can easily be impossible, so we just do what we had planned a few days later.” June’s son had planned a trip to Europe in great detail: reservations for travel and for hotels, sites to visit, places to eat, tickets for everything. When he realized he was too easily fatigued to go, he planned another trip, in the same detail, to a part of the United States he had always wanted to see.     Know what times of the days you have most energy, and plan accordingly. If possible, cook and eat at those times when you have energy: food is the body’s best source of energy. Otherwise, use those times of the day for things you want to get done, things that will give you a sense of accomplishment. Alan schedules appointments for late morning or over lunch. Lisa’s husband asked the community theater to change rehearsal times to early evenings, when he had more energy; the theater was happy to accommodate him.     In general, try to find ways to accomplish what you want with less energy. Lisa’s husband’s fatigue also affected their social life: “Socially, we didn’t go out as much. But then we redefined ‘socially.’ Instead of going out drinking and dancing, we entertained at home. Our social life didn’t disappear.” People who find driving tiring can often take public transportation. Or they consolidate several trips into one, or ask their friends to drive them. When they want to buy clothes or household supplies or presents, they order from catalogs. Catalogs from large department stores have enormous selections of everything from shampoo to shirts to lamps to sheets. To buy groceries, they find a store that delivers, or ask their friends. They get their medications from pharmacies that deliver.     If cooking is tiring, buy foods that are prepared or that can be micro-waved. Try cooking a large amount of food and freezing what you don’t eat. Spaghetti sauce, chili, pot roasts, stews, and soups all taste good made in large amounts and reheated, and they freeze well. If eating is tiring, use nutritional supplements that come as powders and are mixed with milk. Or make a nutritional supplement out of milk, ice cream, and fruit mixed in a food processor. Alan used to do all the cooking, and he still does most of it, but when he is tired, Alan says, “My partner offers to do parts of the meals. He makes great desserts.” Helen does the dishes immediately after eating; she finds that less tiring than letting them stack up and doing several meals’ worth at once. She keeps a chair in the kitchen for when she needs to rest. Dean keeps a chair in the shower, and sometimes he showers sitting down.     Cleaning services may not be prohibitively expensive; friends might help with cleaning too. To minimize what must be cleaned, try consolidating your living into one area or one floor. Make a bedroom on the first floor, or turn the bedroom into a living area. Consolidating your living also saves steps. Put a dorm-sized refrigerator next to your bed for juice or fruit. Keep the phone near your bed.     Wear clothes that are easy to wear and to care for: jeans, knitted shirts and pants, sweatsuits, clothes with elastic waists and no buttons, clothes that can be washed and dried easily and do not need ironing. Alan used to do the laundry alone; now he and his partner do it together. “I don’t get as tired,” Alan says, “and it’s more fun that way.”     If several friends or relatives have offered help, do not be shy about accepting it. After all, you need the help, and if circumstances were reversed, you would want them to accept your help. Try making lists of things you would like help with. Perhaps one friend would not mind regularly watering plants, another might feed your cat, another might help with the laundry.     Fatigue often makes paying bills particularly onerous. Friends can help with regular bills; they can write the checks for the mortgage, rent, utilities, taxes. Some banks will deduct payments for monthly bills directly from your banking account.     Do what you can; don’t give up before you need to. June worries that people give in too soon to their fatigue, and then they miss doing what they are capable of doing. When June is not at home caring for her son, she visits other people with AIDS. “Some are tired and giving up,” she said. “I say to them, ‘Don’t tell me you can’t go out next Wednesday. This is only Sunday. How do you know how you’ll feel on Wednesday? If you think tired, you’ll be tired.’” Steven says, “I keep pushing myself. I do wake up tired and don’t like that. I make myself get up. I get out of that bed.” Alan agrees: “The main thing is that I not feel like an invalid. I still cook, even though my partner helps out a lot now. But I still cook.”     If you know you’ve done your best, then relax and rest. Try not to let fatigue affect your good opinion of yourself. You’ve done what you could.
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