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I just found out I’m HIV positive
Do I have HIV or need to test?
I just found out I’m HIV positive
If you have just been diagnosed this can be a scary time.
Stop. Take time. It is going to be ok.
An HIV diagnosis may be unexpected. Or may have been something you were worrying about for a long time.
Even though it may not feel like it, your health will be better now you know your HIV status. This is because you can now get the right monitoring and treatment.
Finding out you are HIV positive changes how you feel about your life. It is likely to change your relationships with other people. You have the time to work this all out.
It will probably take a while for the news to sink in. Some aspects of being HIV positive take time to come to terms with.
Even if you feel worried, frightened, upset or angry now, it will get easier. You will still be able do all the things you wanted to do before you learned that you were HIV positive.
HIV for most people can be easily managed and treated. This doesn’t mean that life will always be easy or that HIV should been taken lightly. It does mean that if you are careful, you can live a long and healthy life.
Treatment is highly effective, generally easy to take and is now routinely recommended for anyone who is HIV positive. Being on treatment also makes it difficult to pass HIV to other people.
Although finding out you are HIV positive is a shock, it will get easier.
Modern treatment means that you can still do everything you planned before you found out you were positive. You can also have as long and as healthy a life as if you were HIV negative.
After you are diagnosed, the only people who know your status will be you, your doctor and other health care workers involved in your care at the HIV clinic.
- Healthcare workers can not tell anyone about your results without your permission, including your family doctor or your partner.
- Who you choose to tell, and when you tell them, is for you to decide.
Think about who you can trust with this information. Think about whether this is news they will be able to deal with. Once you tell someone you can not take that information back.
- If you think that the person you want to tell will not be able to cope, then you may have to do the research first, to help them with the news.
- If you do not want to talk to a friend or family members, then at least speak to one of the health advisers or counsellors at your clinic. They should be able to help you with your first questions. They can also help you access other support services.
- Outside the clinic, many HIV community organisations run phonelines and support groups.
Friends and family
Because HIV is now largely treatable, there is rarely any urgency to have to tell other people until you feel ready to do this. You can take time to learn about HIV and treatment before you tell family and friends who may still be shocked and worried.
- Telling someone your HIV status may change how they think about you or how they treat you. Many people may have a more positive response now because there is treatment. Many others will have a gut reaction based on fear and worry. Stigma is still a problem in many communities.
- On the other hand, keeping things secret in the long-term is likely to cause you stress. It will make a big difference and will help you to have at least one or two close friends who you can talk to.
Knowing other people who are also HIV positive can made life a lot easier. Being HIV positive without knowing anyone else in the same circumstances is difficult.
It really helps to be able to talk to someone who is living with HIV.
Here at Body Positive Dorset we have a Blog that you can read and join, or simply send us a message with your questions. We have all been in the same situation as you, and have been through what you are going through now. So we are here to help and reassure you that you are not alone. We may be able to put you directly in touch with someone in your area.
Online forums are a good way to communicate with other people, especially if your are more geographically isolated. The best and most established is run by poz.com. Although it is based in the US the poz forums include a lot of contributions from people elsewhere.
More recently, the THT set up a similar forum based in the UK called myHIV.org . This requires a more complicated registration process but you can still do this using a made up name if you want to do this anonymously. You need a working email address to register.
If this is all new to you, it will take time to get your bearings and build up your strength to deal positively with your new life. It will also depend on where in the world you live.
The following suggestions may help:
- Take some time to let the information sink in – unless you have symptoms – ie you feel ill – there is rarely any urgency to starting treatment, however the latest WHO guidelines recommend starting ART treatment as soon as you are diagnosed.
- Ask at the centre that you tested at, where your closest and best HIV doctors work – I know healthcare systems vary greatly in different countries. In the UK Sexual Health Departments can test and diagnose if you are positive, and then arrange for you to see a Sexual Health Advisor who can discuss your diagnosis with you.
- You will need to have a blood test called ‘CD4 T cell count’ to see whether HIV has affected your immune system yet, and a viral load test if it is available in your country.
- Find some good sources of accurate, easy to understand, clear information so you can learn about your diagnosis, and the benefits of treatment if and when you need it. You can go through the other FAQs on this page, go to the Links page and get good information from those sites. You can also visit our Contact page where you can ask a question or send us a message. Please visit our Blog page where you can read posts from other HIV Poz people about their own stories and issues related to HIV.
- It is difficult to deal with an HIV diagnosis on your own. Consider telling a close friend that you trust, or see whether there is an HIV support group or organisation in your area. It can help to meet and know other people in a similar situation. Many organisations also offer support services, such as phonelines, where you can talk anonymously, if this is important to you at first.
Things will get easier, although it may take time, remember you are not alone, we are here to help.
If you are HIV positive, choosing who to tell can be difficult and it’s important to think about how different people may react to being told that you have been diagnosed with HIV.
You may feel like telling people soon after you receive your HIV diagnosis – but remember that once you’ve told someone you can’t ‘un-tell’ them.
It is important to think about how different people may react to being told that you have been diagnosed with HIV. Things to think about include:
- Why do I want to talk to this person about my HIV status?
- What are the benefits of telling them?
- Are they good at talking about emotional issues?
- How would I like them to react ideally?
- What will I do if they don’t react in the way I expect or hope for?
- Can I trust them not to tell other people?
Telling someone that you have HIV can be a very positive experience and will hopefully mean that you have someone to offer you support.
But you have to be prepared for different reactions. Some people may become upset at your news, especially if they don’t know much about HIV. It might be useful to have some basic information to hand them to look at and provide reassurance.
Unfortunately some people may not react in the way you hope and may be unkind or discriminatory. If this happens there is support available to you such as counselling or support groups. This may vary depending on your location.
Before telling people it can be helpful to talk it over with a healthcare professional at your clinic.
Whether to tell your friends about your HIV diagnosis will depend upon your relationship with them. Often, confiding in a good friend can be an invaluable source of support.
Friends can be as close as your family, or even closer. If you haven’t shared much personal information with friends in the past you might not want to tell them about your HIV status. It may be helpful to ask yourself if the person you want to tell:
- has been helpful when you talked about problems in the past.
- accepts and loves you.
- respects your privacy.
- is a good listener.
- is practical, sensible and reliable.
It is important to think about how they might react. You may have friends who are already knowledgeable about HIV and others who know less; so it is important to be prepared for any reaction.
Deciding which friends to tell might also depend upon culture. In some cultures HIV is something which is hard to talk about because of the fears people have about it or the myths they believe.
Also, friends from any culture may believe incorrect information about HIV and treat you differently or unkindly. If you think your friend might react like this, it may be easier for you to get support from an HIV organisation or a support group for other people living with HIV.
Sometimes people become upset and have exaggerated worries about what your HIV diagnosis means for your health.
They may also be concerned about the risk of the virus passing to them. So it can be a good idea to have leaflets to hand to give to them so they feel reassured.
If you have been diagnosed with HIV you may be thinking about telling family members – but your decision will depend on the relationship you already have with them.
It may be helpful to ask yourself if the person you want to tell:
- has been helpful when you talked about problems in the past.
- accepts and loves you.
- respects your privacy.
- is a good listener.
- is practical, sensible and reliable.
Family members may have incorrect information about HIV and treat you differently or unkindly. If you think your family might react like this it may be easier to get some support from an HIV organisation or a support group for people living with HIV.
If you do decide to tell someone in your family, it might be useful to have some leaflets you can show them – people may have exaggerated worries about HIV and having something to read may be reassuring.
Some people worry that if they become unwell and have to be admitted to hospital, the medical staff might disclose their HIV status to their relatives against their will.
Generally doctors wouldn’t disclose someone’s HIV status. They might explain that the person has a condition like pneumonia, for example, without mentioning their HIV infection.
In some situations medical staff might encourage people to disclose their HIV status so they can get support from their family, but they will not force them to do so.
Often people don’t understand the ways HIV can be passed on, or they may feel worried and upset about your health.
They will be reassured to know that you’re getting good care from your HIV clinic and that you know where to get support and how to take care of yourself.
HIV stands for Human Immunodeficiency Virus. It’s a virus that attacks and weakens the immune system. If it’s untreated, HIV causes so much damage that the body is no longer able to defend itself.
People who have been infected with HIV are often referred to as being HIV-positive (sometimes this is written as HIV+, or even +ve). Although there have been many advances in treatment in recent years, there is still no cure for HIV infection.
HIV-1 and HIV-2 are two different viruses. HIV-1 is the main family of HIV and accounts for 95% of all infections worldwide. HIV-2 is mainly seen in a few West African countries. The spread in the rest of the world is negligible. Although HIV-2 generally progresses more slowly than HIV-1, some HIV drugs (like nevirapine and efavirenz) do not work against HIV-2.
On a structural level HIV-1 and HIV-2 have important genetic differences. A technical description of the difference is that the vpu gene found in HIV- 1 is replaced by the vpx gene in HIV-2. In addition, the protease enzymes from the two viruses, which are aspartic acid proteases and have been found to be essential for maturation of the infectious particle, share about 50% sequence identity. There are, however, differences in substrate and inhibitor binding between these enzymes. Most notably between the CGP 53820 inhibitory binding.
On functional level, there is a difference between the two viruses in terms of how easy it is for the virus to infect someone. HIV-1 enters the immune system by attaching onto the CD4+ receptor found on the surface of certain white blood cells. HIV-2 has a harder time gaining such a foothold.
Both viruses are fragile and highly susceptible to physical and chemical agents and therefore do not survive well outside the human body. HIV in blood or sexual fluid for example is not infectious after it has been outside the body for a few minutes.
HIV is the virus that can lead to AIDS. AIDS stands for Acquired Immune Deficiency Syndrome and is seen by the appearance of the opportunistic infections (infections like tuberculosis which take advantage of a weakened immune system) that are a result of HIV.
If you are diagnosed with HIV early, and respond well to treatment, you are not likely to develop AIDS.
The name ‘AIDS’ was more appropriate many years ago, when doctors didn’t fully understand the late stages of HIV infection. Today we know that AIDS is not a syndrome at all, because a syndrome is a collection of symptoms that do not have an easily identifiable cause. A more current name for the illness caused by the late stages of HIV infection is HIV disease. However, AIDS is still the name that most people use to refer to the immune deficiency caused by HIV.
As treatment for HIV infection has becomes more effective, very few people in the UK are now given an AIDS diagnosis.
Most people experience some symptoms shortly after infection with HIV. This is commonly referred to as seroconversion illness (SCI), or primary HIV infection. It usually occurs in over 60% of people around two to six weeks after they have been infected.
The main symptoms of SCI are:
- A sore throat
- Body aches
- A rash
Other common symptoms include:
- Mouth ulcers
- Joint pain
- Loss of appetite
- Weight loss
- Muscle pain
- Feeling overly tired or sick.
These symptoms are only linked to infection with HIV if you have put yourself at risk (such as unsafe sex) in the last six weeks. Because these symptoms are common to other illnesses, many people do not realise that they are a sign that they have become infected with HIV.
What do I do if I have these symptoms?
If you have any of these symptoms and have had unsafe sex in the last six weeks, it is worth visiting your doctor or sexual health clinic and getting tested for HIV so that you know what your HIV status is. Different HIV tests will be appropriate, depending on how long ago your risk was. Men who have recently been infected have very high levels of viral load which makes it more likely that HIV will be transmitted if they have unprotected sex. Even if you have had recent risky sex, it does not necessarily mean that those flu-like symptoms are seroconversion illness. It could just be the flu.
Doctors use two key tests to assess the strength of your immune system – a CD4 cell count and a viral load test. HIV damages your immune system even though you may look and feel well. That’s why new guidelines recommend that everyone with HIV starts treatment whatever their CD4 count.
Viral load explained
The viral load test shows how active HIV is in your body.
The test for viral load measures how many particles of HIV are circulating in the blood. The results are given as the number of ‘copies’ of HIV per millilitre of blood – for example 200 copies/ml.
Your viral load test results can fluctuate a lot if you’re not taking HIV treatment. Looking at the trend over a number of months may be more useful than comparing two test results.
A high viral load will usually – but not always – mean a low CD4 count. Knowing what is going on with your immune system can help you make decisions about lifestyle and treatment.
What’s happening inside you after infection?
When you first get HIV, your body starts to produce antibodies to fight it off.
You may feel ill for a while at this stage. This is often called ‘seroconversion illness’ because it coincides with the time that blood (‘sero’) tests for antibodies to HIV become (‘conversion’) positive.
Once seroconversion has taken place, you may stay well for a number of years without treatment. But there will be some signs of damage being done to your immune system.
As you can see on the graphic above, you will also be infectious during this period, even though you may not be aware you have HIV. That’s why it is so important to get diagnosed early, so you can start treatment as soon as possible – before too much damage has been done to your immune system.
The strength of your immune system can be detected by laboratory tests. Doctors will use two key tests at your regular clinic appointments – a CD4 cell count and a viral load test.
What is the CD4 cell count?
This test gives a rough indication of the strength of your immune system.
A normal CD4 cell count in an HIV-negative man is between 400 and 1600 per cubic millimetre of blood (but doctors normally just give a figure, e.g. 500). CD4 cell counts in HIV-negative women tend to be a little higher, between 500 and 1700.
Soon after infection with HIV, your CD4 cell count probably dropped sharply, before stabilising at around 500 to 600. Even while you are well and have no obvious symptoms of HIV, millions of CD4 cells are infected by HIV and lost every day, and millions more are produced to replace them. General illness can also have an impact on your CD4 count, which may subsequently rise again.
Without treatment, an HIV-positive person’s CD4 cell count will fall over time (see the graphic above).
Starting treatment – new guidelines
Recently the British HIV Association (BHIVA) treatment guidelines have been changed to say that anyone with HIV who is ready to commit to treatment should start regardless of their CD4 count. This reflects the findings of the START study.
START found that people who waited to start treatment until their CD4 count dropped to 350 (which is when people were previously advised to start) had a much higher chance of developing AIDS-related illnesses such as cancers.
Starting treatment also reduces the chances that you will pass on HIV.
The risk of HIV transmission is related to different factors. These include:
- Which body fluids are infectious.
- How infection occurs – often called the ‘routes of infection’.
- Other risk factors including viral load, type of sex, genetics etc.
Only some bodily fluids have the potential to be infectious.
- Sexual fluids (semen and vaginal fluid).
- Mucus from the vagina and anus.
- Breast milk is infectious to a baby but is unlikely to be infectious to an adult.
- Tears may be infectious but this is more a theoretical caution than a likely route of actual transmission.
Saliva, spit, urine and faeces are not infectious for HIV.
There then has to be a route for another person to become infected.
Common routes include:
Contact with the mucous membranes of genital or anal tissue. A mucous membrane is a type of tissue that is a less effective barrier than skin. The inner foreskin is also a mucous membrane.
Ulcers, sores, tears or micro abrasions (microscopic cuts) on genital tissue (to the vagina, penis or anal lining).
Any direct route into the bloodstream including cuts in your mouth. Sharing needles and injecting equipment has one of the highest risks of transmitting HIV. This is because there is a direct blood-to-blood route.
HIV is not transmitted by day-to-day activities or by contact with objects, food or clothes.
The following list includes just a few examples of questions from people worried about catching HIV.
Most of these questions come from a combination of fear and ignorance. They come from a lack of confidence in understanding HIV transmission.
You can NOT catch HIV from:
- Eating any food, cooked or uncooked, with blood on it.
- From a sterile needle at a clinic or other health centre.
- From a human bite.
- From an insect bite including a mosquito bite.
- From an animal.
- From living in the same house as someone who is HIV positive.
- From a sewing needle if you stab your finger.
- From blood on a bus seat that went through your underwear.
- Cleaning nail clippers.
- Using a knife/fork/spoon/cup/plate that an HIV positive person may have used.
- Getting sexual fluid on skin.
- Getting sexual fluid on a cut that has already healed over. A cut has to be open to be a risk of HIV.
Effective barriers against HIV
There are many effective barriers that prevent infection.
Skin: Skin is an excellent barrier against HIV, unless there is an open cut or open wound. Infectious fluid on skin is not a route for infection.
Mucous membranes in the mouth, throat and stomach: These membranes are good barriers against HIV infection, so long as there are not cuts, ulcers or sores.
Saliva: Saliva contains proteins and a low salt content that actively reduce its infectiousness. Even when HIV is detected it is unlikely to be in sufficient quantity to cause infection. HIV is not transmitted by kissing including deep kissing. Spit cannot transmit HIV.
Air: HIV is not transmitted by air.
Latex and rubber: Condoms prevent infection from HIV and many other sexually transmitted infections.
Many sexual situations have no risk of transmitting HIV.
These include masturbation (by yourself or with a partner), kissing and deep kissing, receiving oral sex and vaginal or anal sex using a condom correctly.
No. If you are in contact with sexual fluid it is better to wipe this off with a dry cloth. One study reported that infection rates were higher in people who washed after sex.
Douching can spread the virus further and soap and water may make a vulnerable membrane an easier barrier to get through.
Lemon or lime juice, even diluted, will increase the risk of transmission as it damages tissue.
It is quite common for one partner to test positive and the other negative, even if they have been having sex without condoms.
Mostly this is explained by luck and the role of other risk factors. Over time, most people will catch HIV if they continue to be at risk.
Even though you have been exposed and not infected, you can still catch HIV in the future.
Now you know your partners HIV status you can still stay together and have sex safely. You can prevent infection by using condoms when having sex and not sharing needles or blood products with your partner.
The risk of transmission also drops dramatically if and when your partner uses HIV treatment for their own health.
This is an exciting new area of research.
The link between viral load and the risk of transmission has been known for at least ten years.
More recent studies have strengthened the link between an undetectable viral load and a reduced risk of transmission.
These are mostly heterosexual studies. There is little or no data on the impact of risk from anal sex (gay or straight). Much of the follow up in these studies is also from people who still use condoms.
An undetectable viral load does not mean zero risk but it does dramatically reduce the risk.
There has been at least one case of HIV transmission reported from anal sex with an HIV positive insertive partner who had an undetectable viral load and no STIs.
Some people have multiple exposures to HIV, from either one person or several partners, and still do not get HIV.
Sometimes this is related to genetic factors, only some of which are understood. Most of the time it is just related to luck.
Although immune responses to HIV can develop in some people after frequent exposure, this is not well understood. Using condoms as protection against infection is still recommended.
Even people with a high level of genetic protection can still become infected.
In heterosexual vaginal or anal sex, if other factors are equal, a woman has a biologically higher risk of infection compared to a man.
The surface area of the vagina or anus is far greater than the surface area of the penis.
The risks of tears to the vagina or anus during sex is greater as the these inner linings are more delicate than the skin on the penis.
The length of time of exposure of the vagina or anus to semen is greater than the time the penis is exposed to the vaginal fluid or rectal mucosa.
The risk for anal sex, if other factors are equal, is greater for a receptive partner compared to an insertive partner.
The surface area inside of the anus, is larger than the surface area of the penis.
The risks of tears to the anus during sex is greater as the membrane on the inside of the anus is more delicate than the skin on the penis.
Pre-cum and cum will stay in the receptive partner for longer than the insertive partner is in contact with rectal tissue and mucosa.
Do I have HIV or need to test?
The only way for you to know this is for you to take an HIV test.
There is lots of information about risk, but unless your risk is zero, which is sometimes the case, you need to test to find out.
Testing is easy and free or cheap.
If you are worried that you have been at risk, like millions of other people, just take a test.
The only way you can know your HIV status is by taking an HIV test.
If you are sexually active, then it is better for you and your partner to know your HIV status.
HIV testing should be a routine part of looking after your sexual health. As is repeating the test every 6-12 months – or as appropriate, depending on your level of sexual activity and risk. This is important in case you are exposed to HIV in the future.
In the UK and many other countries, at least one-third of people living with HIV are not yet diagnosed.
General risks are not very helpful for individual circumstances for two reasons.
- If you have had any risk that is, for example, 1 in 1000, you still need to test to know your result. This remains true whether the risk was much higher (1 in 10) or much lower (1 in 20,000).
- Because a general risk of 1 in 1000 (sometimes quoted for unprotected insertive sex) is meaningless without considering other factors.
You need to know the chance that your partner is HIV positive, whether they are on treatment, if so, what is their viral load? Some things you won’t be able to test for, like genetics.
Even these few factors could change the same risk of 1 in 1000 to as high as 1 in 10 or as low as 1 in 20,000.
No. If you want to know your HIV status you need to take your own test.
You cannot interpret your HIV status based on another persons’ results.
You also have no right to ask another person to take an HIV test.
This is about your sexual health. It is your responsibility to test. You cannot impose your worries about your health on another person.
If you test positive, then it makes sense to notify your partners so they can also test.
Post Exposure Prophylaxis, or PEP, is a course of HIV medication which you can take if you have been at risk of HIV infection. The course of medication lasts 28 days and, if you start taking it within 72 hours of being at risk, it may be able to prevent you from becoming infected with HIV. In other words, it is a form of protection (against HIV) that you can take after you have taken a risk or had a condom break.
How effective is PEP?
Research indicates that PEP can prevent infection with HIV, but it is not 100% effective . PEP is more likely to be effective when the treatment starts as soon as possible after the risk occurred. It will not be prescribed later than 72 hours after HIV exposure.
What are the side effects?
People taking PEP are likely to experience the same kind of side effects as HIV-positive people experience when they begin to take HIV medication, which can include:
As a result of these side effects, some people fail to complete the full course of PEP.
What medication will they use?
PEP consists of a triple combination of anti-HIV drugs . A number of different drugs may be used, but the recommended combination is Truvada (one tablet taken once daily) and Ritonavir (one tablet twice daily). Truvada is a combination pill consisting of tenofovir (TDF) and emtricitabine (FTC). The drugs should be taken as prescribed for 28 days.
The drugs used for PEP are expensive and powerful so the decision to offer treatment is not taken lightly. PEP uses the same drugs that treat HIV infection so you are likely to experience the same kind of side effects as people who are beginning to take HIV medication. Common side effects include diarrhoea, nausea, headaches, and tiredness. In rare cases more serious side effects, such as liver damage, can occur. The doctor will need to explain the effects of these medications before you start PEP. Some people often stop taking PEP or miss doses due to these side effects, but this stops the treatment from working. In order to have the greatest chance of success, every dose of PEP must be taken as prescribed. If you find you have missed a dose, take it as soon as you remember it.
Where do I get PEP?
This will vary from country to country, the following applies to the UK.
At a Sexual Health Clinic
At an Accident & Emergency (A&E) department of some hospitals – A&Es are especially important at weekends because most Sexual Health Clinics will not be open
Because HIV medication is expensive, clinics will only prescribe PEP if they believe that you have had a real chance of infection
PEP will not be given to someone who is already HIV-positive so you will always be tested for HIV before you are put on the course.
PrEP stands for Pre-Exposure Prophylaxis. An HIV-negative person takes pills (developed to treat people with HIV) regularly to reduce their risk of HIV infection. Several studies show that PrEP works. PrEP is currently only available in the UK to people enrolled in the PROUD study, or by private prescription from some sexual health clinics and GPs.
How effective is PrEP?
The PROUD study, which began in 2012, announced its findings on 24 February 2015. The study found that:
PrEP reduced the risk of HIV infection by 86% for gay and other men who have sex with men when delivered in sexual health clinics in England
The researchers concluded that PrEP offers a major opportunity to curb new HIV infections in men who have sex with men in the UK
Research suggests that PrEP is as effective as condoms in preventing HIV transmission, as long as the pills are taken regularly, as directed
Evidence from another large international study suggests that gay men who maintained at least four doses a week had 96% fewer infections.
PrEP does not prevent other sexually transmitted infections or pregnancy. It allows someone to protect their own health, irrespective of whether their partner uses a condom. Because it is taken several hours before sex, it does not rely on decision-making at the time of sex.
Why take HIV treatment to avoid taking HIV treatment?
People living with HIV need to take lifelong treatment. PrEP consists of fewer drugs and people only need to take it during periods when they are at risk of HIV. Many people find that their sexual behaviour changes over time, for example when they begin or end a relationship.
Does PrEP have side-effects?
Any medicine can have side-effects, so taking PrEP is a serious decision. The drugs in PrEP have been used as part of HIV treatment for many years. This has shown that they have a low risk of serious side-effects. Most people taking PrEP don’t report side-effects. Some people have stomach problems, headaches and tiredness during the first month but these usually go away. People taking PrEP have regular check-ups at a clinic.
Does PrEP mean people take more risks?
The PROUD study did not find significant difference in risk behaviour between the control arm of the study (those not on PrEP) and the immediate arm (those prescribed PrEP at the commencement of the study). Other studies of PrEP have consistently reported that being on PrEP did not result in people adopting riskier behaviours. Instead it gives people who already find it difficult to consistently use condoms a way to protect their health.
This question usually refers to how soon after exposure can someone test for HIV.
This usually requires waiting four weeks before taking an antibody-based test.
The latest UK guidelines state that 4th generation HIV tests (antigen/antibody) will detect 95% of infections four weeks after exposure.
A negative test after four weeks then needs to be confirmed with a second test three months after the risk. This is because some people take longer than four weeks to generate an antibody response.
In high risk exposures, especially if symptoms occur, viral load testing is sometimes used after one week.
This includes after a sexual assault or after a needlestick injury to a health care worker.
In these cases a viral load test can exclude an infection when there are symptoms.
Viral load tests are not approved to diagnose HIV. A negative result still needs to be confirmed by an antibody test three months after the risk.
Recommended time from exposure to HIV test
The window period is time between potential exposure to HIV infection and the point when the test will give an accurate result.
During the window period a person can be infected with HIV and infectious but have a negative HIV test.
The window period for a 4th generation antigen/antibody test is four weeks. At this time this test will detect 95% of infections. After a three month window period after exposure, the confirmatory test will detect more than 99.97% of infections.
The earliest marker is HIV viral load. This is in the first weeks after infection (usually from 1 to 6 weeks after exposure). A high viral load is related to seroconversion symptoms. The first HIV protein (antigen) that can be measured is p24 (from 1 to 8 weeks after exposure).
Viral load and p24 tests are not accurate for diagnosing early HIV if the results are negative.
An HIV antibody response can be detected as early as two weeks in a few people and in more than 99.9% of people by 12 weeks. An antibody test at 4 weeks will detect 95% of infections.
Antibody testing at 4 weeks can give you a good indication of your HIV status, but you need a test at 12 weeks after the exposure to be considered HIV negative.
Before taking an HIV test someone at the clinic should explain what is involved. This should include information about the type of test and test accuracy.
It should include information about what happens if the results are positive. It is important that you know about what happens if the results are positive.
Blood samples can be from a pinprick or having blood taken into a test tube.
Oral tests involve rubbing a swab on your gums to collect samples of cells.
Rapid HIV tests can give results in 15—60 minutes, or on the same day.
‘Rapid’ refers to the time taken for the results and not the time since exposure that a test can be used.
If samples are being sent to another lab, results can take a few days or a few weeks.
Rapid blood tests put a pin-prick of blood on a testing strip. This test takes about 15-20 minutes so you can get the results whilst you wait.
Some rapid tests also work on oral samples rather than blood. Although they are sometimes called saliva tests this is not accurate. Oral samples collect cells from the surface of the gums and not saliva. These cells contain HIV antibodies.
When samples are sent to a lab you can either collect your results in person or they will be posted out to you. It is your responsibility to get the results. A few clinics may give results over the phone.
A positive result from a rapid test always needs to be confirmed by a different laboratory test.
Your test centre should clearly explain the results of your test.
If you have questions that were not explained, or that still worry you, ask the test centre first.
Rapid blood tests show two lines if positive or one line if negative, in a similar way as a pregnancy test (see Figure 1).
Results from laboratory tests are given as negative, positive or indeterminate.
- Negative or non-reactive means you are HIV negative. You do not have HIV (based on the window period and no recent risks).
- Positive or reactive means the test shows you are HIV positive and you have HIV infection.
- Indeterminate means the test result was unclear and needs to be repeated.
Figure 1: Example results from a rapid test
Yes. Modern HIV tests are very accurate.
This accuracy has to be considered with the window period.
For example, 4th generation tests will pick up 95% of infections at 28 days after exposure.
A confirmatory test three months after the exposure is always recommended. This is because 5% of people take this long to show a positive result.
A positive test result is routinely confirmed using a different type of test called western blot. The western blot test looks for immune responses to specific HIV proteins.
When used as a confirmatory test, the western blot result is 100% accurate. (This assumes that there is not a lab error and that it is your sample that has been tested).
HIV antibody tests are not affected by other circumstances.
This includes infections, medications, most vaccinations, putting on weight, eating or drinking anything before the test, use of alcohol or recreational drugs, mouthwash or time of day.
Your test result is accurate even if you had flu or a cold or are using any medication.
You do not need to fast before your test. Food and drink do not affect the results.
This will depend on how recent your last exposure was.
As part of good practice, if the exposure was less than three months ago then testing at three months after exposure is usually recommended.
HIV tests after the 3 month window are more than 99.97% accurate. They work for all types and subtypes of HIV.
Very few medical tests have 100% accuracy. There will still be rare cases where someone is HIV positive and not picked up.
However, HIV tests are one of the more accurate tests for any medical infection. Tests showing a negative result are ‘interpreted’ as negative.
If the result is negative three months after exposure your result is interpreted as negative. This assumes you have had no further risks.
At this point you can stop worrying. This is the purpose of testing. Learn from the experience you have gone through in taking a test.
Learn about how to protect yourself in the future so you don’t have to go through this stress again. This will enable you to make informed decisions and to look after your sexual health.
If the result is negative four weeks after the exposure, this tells you that you are very likely to be HIV negative. The test after three months will confirm this.
A false negative test result occurs when the test shows negative and the person is really HIV positive.
This is very rare and usually occurs during the window period when people are newly infected but the test can’t quite pick up the infection.
As with other types of tests, there is always be a small margin of error. With antibody-only tests (3rd generation) only 0.3% of tests (3 tests in every 1000) will be a false negative after 3 months.
With 4th generation tests this is even lower. In practice, a negative result after three months means you do not have HIV.
You do not need to test again unless you expose yourself further in the future.
A false positive test is when the test result shows positive but the person is really negative. This can happen with antibody tests when the test picks up antibodies for other infectious agents.
Approximately 1.5% (15 out of every 1000) antibody tests are a false positive. The fourth generation tests have a much lower chance of a false positive.
This means that a small percentage of people who test positive on a rapid test (where the results are given within an hour) may turn out to be HIV negative.
A second blood sample will be tested in a lab to look for this.
If your blood test was originally performed in a laboratory, a positive result would have already been confirmed before giving you this result.
All positive laboratory tests in the UK are routinely confirmed using a second type of test called western blot that is 100% accurate.
ART stands for antiretroviral treatment. It is also called therapy or combination therapy or HIV treatment.
HIV drugs are called antiretrovirals (ARVs) because HIV is a type of virus called a retrovirus.
ART nearly always includes at least three active drugs.
Some pills contain more than one drug and some single pills contain a complete combination.
ART has reduced HIV-related deaths and illnesses in every country.
More than 15 million people are now on treatment worldwide.
ART works for adults and children, for women, men and transgender people. It works no matter how you were infected, whether this was sexually, through injecting drug use, at birth, or by blood or blood products.
Taking drugs exactly as prescribed reduces the virus in your body to tiny amounts.
Even though you will still be HIV positive, ART reduces the chance that you can transmit HIV.
Some cells in your body will always contain HIV. But research to find a cure might even overcome this in the future.
This is a big change in 2015.
We now know that HIV can cause serious problems even with a strong immune system.
Treatment is very effective and easy to take. It often involves only one or two pills a day.
How quickly does HIV progress without ART?
HIV infection progresses at very different rates in different people.
Nearly everyone who is HIV positive will need treatment at some time.
This includes people whose HIV progresses very slowly.
- At least 1 in 5 people progress quickly. Their CD4 count will drop to less than 350 within 2 years of infection.
- Up to 50% of people could take 2-10 years (average of 5 years) until the CD4 count drops to 350.
- About 1 in 4 people keep a CD4 count above 350 for 10 years without treatment.
- Less than 1 in 20 people keep a CD4 count above 350 for 15-20 years without treatment.
- Only 1 in 10,000 people keep a high CD4 count without treatment for more than 20 years.
ART is now recommended when diagnosed regardless of your CD4 count even when this is still high.
You and your doctor will discuss the best time to start treatment. This will usually take place over several visits.
ART now has a very low risk of serious side effects.
Mild side effects are more common when you first start. These are usually easy to manage and improve within the first few weeks.
If side effects are difficult or do not improve, you can change to other drugs.
Your quality of life should be as good or better on ART than before you started.
All medicines have a risk of side effects (or adverse events). This is a real and common worry.
- Most side effects are usually mild.
- It is easy to switch to another HIV drug or to use medication to manage the side effect.
- There is only a small risk of serious side effects. It they occur, they should be picked up by routine monitoring.
- Within a few weeks of starting, most people find that ART is much easier to take than they expected. It usually becomes an ordinary part of everyday life.
- If you need to modify your combination, there are other drugs that may be better for you.
- Ask your doctor, nurse or HIV pharmacist about the most common side effects of the drugs that you might use.
- Ask how likely they are to occur.
- Even rough estimates will give you a good idea of what to expect.
- Ask how many people stop treatment because of side effects – usually it is very few.
Your CD4 and viral load are the main blood tests used to monitor HIV.
The CD4 count tells you about your immune system. Results are given as cells per cubic millimetre (cells/mm3).
The range for HIV negative adults is from about 400 to 1600. Getting above 500 is considered normal.
Even with a very low CD4 count, ART can boost your immune system much higher.
The CD4 percentage (CD4%) is also good to know in case your CD4 count has unexpected changes.
Viral load (VL)
The VL test shows how much virus is in a small sample of blood. Results are given as copies of the virus per millilitre (copies/mL).
VL tests show how well ART is working. The aim is to reduce this to less than 50 copies/mL. This is called undetectable.
If VL doesn’t become undetectable within 3-6 months, or it increases later, you might need to change treatment.
This is because the drugs might not be working or you may not be taking them correctly.
Your CD4 count is closely related to your risk of becoming ill. Your CD4 count and how it changes over time is used to decide when to start treatment.
Above 350, you still have a very good immune system but still are at higher risk of TB. As it drops below 350, the risk of skin or digestion problems increase.
Below 200 there is an added risk of a pneumonia called PCP.
Below 100 you become vulnerable to other very serious illnesses.
Below 50 the risks are higher still, including from a virus called CMV that can cause permanent sight loss. A CD4 count this low requires special eye checks.
HIV meds are much easier to take than drugs used to treat these HIV-related problems.
Although you may be worried about treatment, HIV is still a very real and life-threatening illness.
HIV drugs stop the virus from making copies of itself.
This reduces viral load to very low levels. Your CD4 count then has a chance to grow stronger again.
When not on treatment, your immune system works in overdrive. HIV infects CD4 cells and makes more virus.
Your body produces new CD4 cells to fight the virus. Then HIV uses these new cells to produce more virus. It is like a dog chasing it’s own tail.
Over time, and without ART, your immune system gets worn out.
When not on treatment, your immune system works in overdrive
As long as you do not develop drug resistance, the same drugs can work for years or even decades.
This involves getting viral load to undetectable (less than 50 copies/mL).
This is also why it is important to take your drugs on time, to follow advice on taking with or without food, and to not miss doses.
Around 19 out of every 20 people (95%) in the UK whose viral load stays undetectable for the first year, will continue to be undetectable for each following year.
Yes, this is easy.
Although most people do well on their first choice, if it is difficult you can change one or all or the drugs.
This will not harm your long-term health. It will not reduce your treatment options. You can still use the same drugs in the future.
You have many choices, especially if your viral load is already undetectable.
You do not have to put up with difficult side effects.
For most people it is often better to see whether it gets easier after the first weeks or month.
A few people may change quickly, even after only a few days.
Everything in HIV care is individual.
If you have problems with ART, do not stop taking your drugs without first speaking with your doctor.
Contact your HIV clinic to book an early appointment.
Unless there is a medical need to stop, taking a break in ART is not usually recommended.
Staying on ART will generally be better for your long term health. It will keep your CD4 count high and keep HIV under control.
- Stopping ART is not generally a good idea.
- Your viral load is likely to increase within days. Each time you stop there is a risk of drug resistance.
- Your CD4 count is likely to drop. It will be more difficult to recover when you restart ART.
- If you really want to take a break, then first talk to your doctor.
- If this is because side effects are difficult or you don’t like the food advice, there are other drugs that might be better.
If you still want to stop, your HIV doctor can tell you how to do this as safely as possible.
The latest WHO guidelines now recommend that everyone should start ART regardless of CD4 count when they are diagnosed. This is to reduce the longer term issues the virus may cause and to reduce the forward transmission of HIV.
This means that some people should now be thinking about ART earlier than they expected, because the advice from their doctor has changed.
In general though, your doctor is right to be talking about starting ART and this is good information.
The range of responses to HIV has always been very wide. Some people become ill within 1 to 2 years of infection. Others can have a strong immune response that lasts for many years.
If your CD4 count stayed above 500 for more than ten years without ART you a long-term slow progressor (LTSP). If viral load is also undetectable, this is called an elite controller (EC).
The benefits of ART are now thought likely to be important for people with LTSP and EC responses.
This is because HIV may have been affecting other parts of your body than just your CD4 count.
Nearly everyone can get an undetectable viral load on ART.
If you do not get a full response it can be for one (or more) of the reasons below.
Adherence. This means checking you are taking the right dose at the right time each day. It might mean you are not following food recommendations.
Choice of drugs. Is the combination strong enough. Some combinations are not recommended with a viral load over 100,000 copies/mL. Also, the higher you start, the longer it may take to come down.
Resistance. Your HIV may have been resistant to one or more of the drugs you used. UK guidelines recommend a resistance test before starting treatment to check for this.
Drug interactions. Some medicines, including supplements and vitamins, can affect how you ARVs work. Speak to your doctor and pharmacist about all medicines and supplements you take.
Side effects. You have to be able to tolerate your meds and they have to be easy for you to take.
Knowing a little about each issue is good before starting ART.
With all these factors covered, if you have a good doctor and you take your drugs carefully, everyone starting ART should be able to get an undetectable viral load.
Some HIV drugs interact with chems, recreational and street drugs, methadone, vitamins and supplements and over-the-counter medicines.
Interactions can be complex. They can increase or decrease levels of the HIV drugs or the other drugs.
It is therefore important that your HIV doctor and pharmacist know about other drugs or supplements that you take, even if you use them rarely and even if they are not legal.
Your doctor will treat this information in confidence.
Although alcohol does not interact with HIV drugs, the side effects of alcohol might lead to missing doses. This is because alcohol can change your mood, priorities and sense of time. It is easy to forget your HIV meds including if you oversleep the next day.
For these reasons, people who drink more alcohol have a higher risk of ART failure. This is another thing that it is good to talk about with your doctor.
The current drugs are a treatment, but they are not a cure.
Even people who have an undetectable viral load for years, still have small amounts of HIV in their body. This HIV is mainly in CD4 cells that are resting.
Most of your immune cells are meant to be resting. These cells are not in your blood but in lymph nodes.
The resting cells are like books on the shelves in a reference library. When they become active in response to an infection, it is like someone taking the book they need off the shelves.
The HIV in resting cells is why curing HIV is so difficult. These cells might sleep for 50 years – or wake up at any time. This is why you need to continue taking ART.
Research into the search for a cure for HIV is making exciting progress, though this is likely to still take many years.
Even if a cure takes a long time, if you take your drugs and look after your health, you are likely to live into old age.
What is adherence?
Adherence is a word used to describe taking your drugs exactly as prescribed. This includes:
Taking them at the right time.
Following advice to take with or without food.
Avoiding any drug interactions.
Adherence is the most important thing you have to think about when you start treatment.
It will make sure that all the drugs in your combination are at high enough levels to control HIV for 24 hours a day. If these levels drop too low it increases the risk of resistance.
Adherence can be difficult. You may need some support to get used to the changes treatment makes in your life. A routine or daily schedule can really help.
Pick a time to start treatment when you have a few unstressed days to adjust to the changes.
During the first few weeks, getting your treatment right should be your only priority.
Some clinics and/or support organisations have someone who can help. This can include HIV positive people working as a peer mentor.
How much is enough?
Aiming to take every dose – or almost 100% – is still the best goal to aim for.. Even missing one or two doses a week can cause some drugs to fail, especially when starting treatment.
However, a window period of about an hour either side of your usual time is okay for most drugs and most people.
Once your viral load becomes undetectable you may have a bit more flexibility, but it is still important to take adherence seriously.
“Part of the reason I started combination therapy was hearing the experiences of other people living with HIV and seeing how well they looked. I have been on HIV treatment ever since, without a break. The biggest challenge for me to being adherent is the travel involved in the work and for holidays. Once or twice I have mistakenly taken my efavirenz during the day instead of at night. I have barely been able to function because of the side effects. I now facilitate treatment workshops with African people in the UK. People want to know more about their treatments and want to learn. One person came up to me and said that they always tried to adhere to HIV treatment but didn’t know why they had to. Learning the reasons why they need to be adherent was an eye opener for them and they were then able to confidently tell others the same things.” — Winnie, London