January / December #11 : Symptoms? Persist! - by Evelyn C. White

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January / December 1996

Symptoms? Persist!

by Evelyn C. White

Fever, fatigue, diarrhea and nausea are not "just AIDS"

Fever in the morning. Fever all through the night. Sung to a sultry, syncopated beat, these words brought fame and fortune to Peggy Lee. But despite Peggy’s lingering popularity, fever is a symptom of anything but a romantic swoon to people with AIDS—and like love itself, fever is too commonly misdiagnosed or simply ignored by those who should know better.
All too often, physicians lump fevers with fatigue, diarrhea and nausea as “routine ailments” that automatically come with AIDS. Sufferers are given the message that they should just grin and bear. But get it clear: Lazy physicians notwithstanding, these symptoms were not “just AIDS.” They sometimes have distinct pathologies and can be brought under control. People with HIV whose physicians take a laid-back attitude about treating these common symptoms should talk with the doctor about taking their condition more seriously, getting to the source of the problem and beginning treatment. In other words, fevers—unlike tacky television talk shows—do not have to be a ubiquitous part of life.
Not all physicians dismiss common AIDS symptoms. “I’m a firm believer in being aggressive and getting to the bottom of things,” says Dr. Douglas Deitrich, a faculty member at the New York University School of Medicine. “If the symptoms go on for more than three days, they should definitely be investigated. AIDS should not be approached with therapeutic nihilism.”
Alan Gensman is a 42-year-old Topeka, Kansas social worker who says he wishes he had followed Deitrich’s advice. Waylaid by a violent case of nausea, he says he vomited daily for nearly two months before he sough treatment.
“I assumed that I’d be throwing up for the rest of my life,” Gensman says. I didn’t like throwing up and I knew it wasn’t good to be losing so much weight. But I just resigned myself to it.”
Enter Malia Boevingm the outreach coordinator at Topeka AIDS Project. She got wind of Gensman’s round-the-clock nausea and called his doctor. Gensman was admitted to the hospital the same day, immediately given tests and put on a treatment regimen to replenish his body.
“What I heard was that Alan didn’t want to bother his doctor,” Boeving says. “He was just putting up with the vomiting which was not atypical.”
“Scores of diagnostic tests and procedures assist health care providers to treat an HIV patient sacked with nausea, fevers, diarrhea or fatigue,” says Kirsten Balano, a clinical pharmacist with the HIV Consultation Service at San Francisco General Hospital. “But providers can’t help if patients don’t tell them,” she says.
“Providers must know the symptoms patients are experiencing so they can assess what needs to be done,” Balano says. “The urgency with which the symptoms are addressed will often depend on the status of the CD4 cell count. The doctor might order stool tests or a chest X-ray. With fevers, the cause might be anything from a urinary tract infection to meningitis. Everything needs to be ruled out but if patients want doctors to be aggressive in their treatments, it is critical that they communicate what is going on. Then they can work together and come to consensus about treatment.”
Dr. Deitrich agrees. “An AIDS patient could be suffering from a million different things. There should be blood work and investigation for microbes. If all that is negative, you still stay aggressive. You don’t just give up.”
Sometimes, of course, the tests just don’t pan out r a treatment isn’t effective. In these cases, Troy Smith says he urges people to be assertive and to take a commonsense approach to controlling chronic AIDS maladies. “Those ongoing symptoms can really get you down, but there are things people can do to learn how to adapt better,” says Smith, a hotline worker with the PWA Coalition in New York “Some people eat bread or crackers before or after they take their medicine and it helps a lot with nausea. I swear by aspirin [for fever]. And I think it’s important for people with HIV to try to eliminate the stress in their lives and get lots of rest. That’s not to say that you shouldn’t see a doctor if there’s no improvement in the symptoms within three days. But I focus in on the problem so much.”
Many people with HIV can find relief by combining alternative treatments with the more traditional medical protocols, says Boeving of the Topeka AIDS Project. “We suggest that clients explore massage, yoga, vitamins, acupuncture, herbal treatments and biofeedback,” she says. “We encourage them to get active.”
Good advice. To people with physicians who practice cookie-cutter medicine, here are a few more sound words: Don’t tolerate it. Sometimes a physician needs to be reminded that his or her patient is not just a collection of symptoms. Ask for further testing. Ask for reasons why a diagnosis was made. Share this article if you have a hard time articulating your needs. Fever, nausea and diarrhea are not always “just AIDS.” Find out for sure.

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