HEAL London

Have you ever been diagnosed HIV positive at one point, yet later on decided to have another test and found you were diagnosed HIV negative instead? Have you been told that it couldn't happen, or that it is 'extremely rare', or that 'your first positive diagnosis must have been wrong'?

People are led to believe that HIV tests are reliable in that they reliably detect HIV and that there are rarely ever any false positives. And so, even though you may be dutifully getting tested regularly as the doctors want, especially if you are a gay man, AS SOON AS you get one positive diagnosis - testing stops. You may be told there is no point in doing any more because, " That's it: You've got it for life."

But the reality is quite different: Given that we know HIV tests are extremely non-specific, meaning that all kinds of things have already been documented to trigger false positives, it should be no surprise that for people who do at some point in their lives become diagnosed positive, at some later date many are diagnosed negative again - but only if they continue testing. In truth, the reasons for getting a positive diagnosis could be so varied, it is impossible to predict if the antibody level that triggered the positive diagnosis will ever go low enough again to get a negative one.

For example, if you keep having booster vaccinations for Hepatitis B, you may not ever get diagnosed negative because Hep B is already documented to trigger false positives. If have some condition where you need occasional blood transfusions, such as sickle cell for instance, you may find your immune system is constantly generating new antibodies to the new blood and you remain constantly diagnosed HIV positive. HIV tests are biased against black people anyway which doesn't help.

If you were pregnant at some point and got tested during or shortly afterwards and diagnosed HIV positive, you may find that years later without any more pregnancies that your antibody level has gone down enough to now give you a negative reading. It has already been noted that former drug users who had at one time been diagnosed HIV positive can often revert to 'HIV negative' status. That surely is a big clue that it could be the antibodies to the drugs they were using that triggered the false positive rather than a specific infectious retrovirus that remains in the blood for life.

One thing though: If you've ever been diagnosed HIV+ once, don't tell them when you go to get tested again, and get tested somewhere else, anonymously.

If you've ever had a positive diagnosis followed by a negative diagnosis, please contact us. We want to hear your story.