I Was Misdiagnosed With HIV

Health and medicine explained.
April 3 2013 4:19 PM

The Week I Had HIV

Misdiagnoses are a rare but intractable problem. Here’s what happened to me.

(Continued from Page 1)

“Well,” he said, looking at my lab report, “it’s actually kind of a funny result. You have two nonviral bands but no viral ones. I’ve actually never seen a case like this.”

“Could that mean I don’t have HIV?” I asked.

“Probably not,” he told me. “It probably means you’re just seroconverting.”

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Seroconversion occurs during the window period of infection, when HIV attacks the immune system and it responds with antibodies. It is sometimes—though not always—accompanied by flu-like symptoms, such as high fever, respiratory distress, bodily aches, and night sweats. Seroconversion, in other words, is a hypochondriac’s worst nightmare, masking a deadly virus with fairly routine symptoms. One distinction between seroconversion and a standard flu is swollen lymph nodes, a frequent symptom of acute HIV infection. But these can also be caused by a variety of other maladies.

“You said you were sick recently, right?” Dr. Smith continued. “Had a fever? That may well have been seroconversion. If so, you’ll test a true positive soon.”

I had, in fact, learned about seroconversion the previous week, when a different doctor had floated the idea—just possibly because I am gay. When my fever refused to budge after a week, my boyfriend took me to the hospital, where I was hooked up to a saline drip and given a battery of (inconclusive) tests. After I introduced the doctor to my boyfriend, a strange look came over her face and she excused herself. About an hour later, she came back, pulled the curtain closed, and sat down next to my bed.

“Before you go, one last possibility to consider is HIV,” she said. “You do have a fever, which can be a symptom of acute HIV infection. It’s called seroconversion.”

Somewhat alarmed, I asked if any of my other symptoms matched up.

“No,” she conceded. “Your lymph nodes are normal, and you don’t have any respiratory issues. But still,” she continued, lowering her voice and glancing toward my boyfriend, “it’s something to consider.”

Floating such a drastic diagnosis may sound like an overreaction, but in fact, the doctor was merely following generally accepted guidelines for HIV diagnosis. The CDC considers homosexuality high-risk in and of itself. Being monogamous and practicing safe sex doesn’t matter much when you’re a “man who has sex with men.” What matters is your demographic. And my demographic makes me a likely vector for HIV.

Nine days after my visit to the hospital, my HIV test came back indeterminate.

Indeterminate Western Blot tests are a rare but intractable problem. Because they’re used only as confirmatory tests, Western Blots have been the subject of much less technological advancement than immunoassays; it’s more important to detect likely HIV than to confirm it beyond doubt. Some doctors and scientists see no place for Western Blots in the future of HIV testing; in fact, a few labs have begun to phase them out in favor for RNA tests. These search the blood for the virus itself, and have the immeasurable benefit of detecting HIV within only 15 days of infection. It is precisely because of this sensitivity and complexity, however, that RNA tests are rarely used as the first confirmation test: They remain prohibitively expensive for most labs and patients.

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