HEAL London

Health Education and AIDS Liaison - a more intelligent approach

I've been diagnosed HIV+ - should I re-test?

The short answer is “Yes”. The longer answer is “Yes, but…”, and the ideal answer is "No". Basically we recommned HIV test avoidance completely, but we recognise that for psychological reasons it is not always possible.

Let me clarify. Firstly, I’m going to challenge the assertion that anyone is definitely HIV+. Essentially the reason for this is that the notion that HIV tests are accurate is absolutely risible, and the evidence for this is not only in HIV test kit literature, it is voluminous in medical literature too. There are so many other factors that can cause repeatedly positive diagnoses on HIV tests, which include ‘poorly understood cross-reactions in healthy people’ (from an HIV test kit documentation) that everyone should consider their HIV positive diagnosis suspect at the very least.

It’s important to consider too that even the repeat tests are really not worth the paper they’re written on. If it was an excess level of antibodies after, say, flu, followed by a tetanus injection or Hep B booster, any standard HIV test, even one from a different manufacturer, may produce reactivity over the ‘positive diagnosis’ arbitrary threshold due to the same antibodies. The notion that repeating the test, even with a different model, changes the odds is only statistically valid in unrelated events, such as the chance of getting two sixes in row when rolling a dice. But it is logically invalid to claim that it dramatically improves the accuracy if the two tests are being done on the same person around the same time.

Factors that obfuscate the issue

There’s something else you may have noticed: You may be urged to get tested often before you have been diagnosed HIV+, but once you’ve had that one positive diagnosis, testing stops. The publicly stated reason for that is because of the claim that once you’ve got it, you’ve got it for life. The reality is that having people take an HIV test some while later would show up a considerable degree of spurious results, due to the naturally changing level of different antibodies in our bloodstream. Indeed, some people have believed sincerely they’ve been HIV+ for years, only to be persuaded to repeat tests some while later and get varying results including intermediates and negatives.

You may say, “Ah, but my doctor says my viral load says I don’t need to start treatment yet – so that shows there is some HIV present”. Wrong again. Viral load tests are also spurious, and do not correlate with an HIV diagnosis, either negative or positive. In other words, people can have viral loads even when they test HIV negative and some people who test positive have no viral load. The test kits themselves say that whatever result you get, they cannot be used to determine presence or absence of HIV and should not be used for diagnosis.

So the doctor uses them to indicate the finer shades of grey – whether there’s more or less HIV this time – but the test kit is telling you that whatever it says, it isn’t telling you if there’s any or none! You’ll also find it pretty difficult to get a viral load test if you haven’t had an HIV+ diagnosis – that’s because they know that having lots of people who are stubbornly HIV negative but with positive viral load results would show that viral load tests aren’t measuring HIV at all but simply biological flotsam and jetsam that naturally occurs in the bloodstream anyway, and it would expose the disparity between the two tests.

Psychological factors

“But hang on”, you may say, “If HIV tests are so unreliable as you claim, why advise anyone to get re-tested? Wouldn’t it make sense to just ignore it?”. Ah, that is a very valid point, and the answer is that you have to take a variety of factors into account.

The truth is we are complex human beings and are influenced by many things, many of them at an emotive level rather than pure cognitive analysis. And, if something has a strong emotive influence, it will tend to override any logical conclusion we might have reached. Thus, you might understand cognitively that HIV tests are seriously flawed and effectively unusable, but that may well be overridden in your mind by your longstanding belief from childhood in the authority and integrity of the medical profession, and perhaps a belief that ‘the whole world couldn’t be wrong’. This may leave you in the no-man’s land of being aware of the flaws in AIDS science, yet having doubts that “maybe they’re right”.

For most human beings this uncertainty over a theoretically life-threatening scenario is a very difficult place to be. Therefore, even if you don’t believe intellectually in the validity of HIV tests, it still may be psychologically very important for your well-being to get a negative diagnosis after having had a positive one. Because of the conditioning of faith in doctors and medical authority during our childhoods and the high proportion of the population that believe HIV tests are valid, then only a small percentage of the population seem to be able to let go of all the negative psychological effects of an HIV+ diagnosis itself and get on with their lives. So while the ideal answer to the re-testing question may be "Don't bother, it's a waste of time", for most human beings, having absolute faith in a model of reality that is dramatically different from the majority of medical (and popular) opinion is not realistic.

There are also important legal and human rights issues to contend with too, such as the freedom to travel, have intimate relationships, become a parent, get normal medical treatment, and many other things that people not hexed with an HIV+ diagnosis take for granted. These things themselves have a crucial effect on your quality of life, in particular the devastating awareness that you may have a dramatically smaller pool of people to choose from to form relationships with an HIV+ diagnosis.

So for a wide variety of reasons that affect your well-being, if you are beginning to have doubts about the validity of your original HIV+ diagnosis, it is a good idea to re-test.

Dishonest interpretation of results

BUT….well, I was going to say that if you wanted your HIV test to be honestly done, but in reality they aren’t honestly done in the first place. The truth is that, flawed though they are, they aren’t even executed in an objective manner in the laboratory. The reason you are asked a questionnaire before you have an HIV test done is because they want to get an idea of how likely it is, in their opinion, that you have HIV. This is because the test does not usually rely just on your blood sample, their interpretation is also subjectively dependent on your ‘risk’ factors. Indeed, in the UK it is a crucial part of the procedure that the results they get are compared to the results they expect to get.

They may say that “It isn’t subjective, the factors that help produce the result are interpreted in a strict procedure that everyone uses”. That may be so, but that is only organising the subjectivity so that everyone is doing it subjectively according to the same criteria – it is still subjective and only loosely based on the blood sample. In other words, if the result they get is widely at variance with the result they were expecting to get as result of considering your ‘risk’ factors, they may ‘re-process’ your sample in order to get the results to match what they expect them too. They may ‘wash out cross-reacting antibodies’ if they are sure you don’t really have HIV, or they might process you sample for a little longer or not dilute it so much if they think you really have got HIV, for example.

Or if your antibody level is in the arbitrary ‘indeterminate’ zone, they may use your ‘risk’ factors to decide whether your result should be interpreted as negative or positive, similarly to World Health Organisation recommendations. What this means is that with two people having exactly the same antibody response in the middle of the ‘indeterminate’ zone, the white English heterosexual male is much more likely to get a ‘negative’ diagnosis than a black gay African male, or an African woman, for example.

Minimise real risk factors for a positive diagnosis

I’m sure I don’t need to make you aware that if the lab is aware you’ve had an HIV positive diagnosis previously, there is very little chance of you ever getting a negative one from the same lab. So let me rephrase what I was going to say: If you want to stand a chance of getting your HIV test processed less dishonestly, and to maximise your chances of a negative diagnosis, here’s what you have to do:

  • Don’t have any vaccinations of any kind or boosters for previous vaccinations if you are planning to get tested again, for as long as period a time as possible.

  • Don’t bother going within a couple of months of having flu or any other serious illness.

  • Stop being alcoholic.

  • Don’t have unprotected sex with anyone who uses drugs or strong medication – toxic semen appears to be a factor that can provoke unwanted reactions in people. Even receptive sex itself might be a bad idea, as antibodies to semen may provoke a false positive diagnosis, but that does not mean they are inherently harmful.

  • Definitely maintain sleep and nutrition levels to minimise other illnesses. You want to avoid any condition that is known to raise the likelihood of a false positive diagnosis.

In the UK, go to a GUM (Genito-Urinary Medicine) clinic where you have not been before. GUM clinics are strictly prohibited by law from passing identifiably patient-specific information to other places where your medical records might be without your express consent. As they keep their own records, you have to go where they don’t already know what your past diagnosis or medical history is.

If they send the sample away to be processed at another laboratory, use a name and / or address that cannot be linked to your previous diagnosis at the laboratory, perhaps using an anagram of your real name and a friend’s address. They may not send your name and address with the sample, but if they use the same coding system, using your real name and address will produce the same code as your previous diagnosis if they use the same laboratory. Therefore, the remote lab may not know who you are, but they may notice that previously they produced a positive diagnosis for someone with the same code. If they do the lab work on site and exclusively for that GUM clinic, use your real name and address.

Minimise perceived risk factors for a false positive diagnosis

Dress well and take care of your appearance, which just might affect how well the person doing the questionnaire considers you take care of yourself. If you go looking like a Hobo who has just about dragged himself away from the railway tracks, it just might affect how they mark your score on some invisible factor such as ‘lifestyle’ or ‘general hygiene and care of self’.

When the person goes through the questionnaire with you, you should:

  • Be heterosexual or ‘straight’ – not bisexual or gay. Don’t say you are straight but have ‘experimented’ with guys. You are just heterosexual. Don’t claim to be a virgin even if it’s true, they probably won’t believe you. If you don’t think you can get away with claiming to be heterosexual, you definitely do not have unprotected receptive anal sex, and you’ve never had a condom break in use.

  • You don’t take intravenous drugs. Best not to admit to taking any recreational drugs of any type, apart from alcohol, and that in moderate quantities.

  • You tend to have long relationships rather than sleep around.

  • If you say you had a previous HIV test some while ago, it was negative. Don’t ever admit to having had a previous HIV positive diagnosis. They might refuse to do the test on that basis, and if they do proceed there is very little chance it will come back negative. Also don’t say any of your partners ever had a positive test.

  • You are white and you have never been to Africa or had sex with an African person. If you are black, you’ve never been to Africa. If you are African, you left Africa a long time ago and had a negative test since being here.

  • You always use condoms if you admit to casual sexual encounters.

  • Your reason for getting tested is either that you are starting on a new relationship and you want to make sure for their benefit, or that your new partner insists on it before you have unprotected sex. In other words, it is precautionary rather than because you have a belief you’ve been exposed to so to some substantial risk of infection.

I think it’s important to point out here that these are the kind of factors that ‘experts’ consider to represent increased risk of HIV infection. However, for a wide variety of reasons these factors are not necessarily inherently more hazardous to your health.

For example, having unprotected anal sex in a committed relationship with someone who is themselves healthy and does not use drugs is not indicated as being something that is inherently lead to ill-health. Being African does not inherently represent an increased likelihood of poor health or HIV infection, but being black does represent an increased risk of false positives because black people have higher antibody levels generally. Plus, living in Africa may expose you to a greater variety of antigens which, even if your immune system effectively keeps them at bay, may still trigger a false positive diagnosis because of the resulting antibodies. Living in poverty and squalor is definitely a risk for increased ill health, but then it is the poverty and malnutrition and polluted water that is the most obvious cause of widespread ill-health, not some imaginary and unprovable virus.

And if the result is....?

If your diagnosis this time is negative, that proves to you that the tests are not as reliable as they are made out to be. Time to get on with your life and leave that voodoo hex behind. That doesn’t mean it’s a good idea to be reckless again if you had been previously. It may have been previous behaviour that represented a genuine threat to your health that provoked your previous HIV+ diagnosis. Your best bet at all times is to focus holistically on healthy well-being.

If your diagnosis is HIV positive again, remember that the tests have never been demonstrated to have any correlation with HIV. Even if it was a long while after your first diagnosis, studies show (and HIV tests themselves admit) it is not something that can be used to predict future ill-health in people who are presently healthy. It could be something different that triggered a false positive this time, such as having had a baby for instance, which is well documented. Perhaps you just didn’t give it long enough for the antibodies to drop low enough. Perhaps you’ve had some illness in the not too distant past that might have bumped your antibody level up over the threshold again.

Perhaps there’s some genuine health hazard in your lifestyle which is likely to keep your antibody level high, which might itself be a warning to take a look at it. It is important not to lose heart – don’t give up. Keep your focus on a holistic approach to healthy well-being and regardless of whether your HIV diagnosis ever goes negative or not, the end result is likely to be improved health compared to the majority of the population. Which after all, is the ultimate objective.