Question
Recently diagnosed with HIV-2
22 February 2008. Related: All topics, Newly diagnosed.
I was just told by my GYN that I tested positive for HIV-2 but Negative for HIV-1. She really had no other information for me and has never had a patient test positive for this. She told me this via phone call on a Friday night before a holiday weekend so I had no way to get information from an ID specialist. After hours on the internet I have several questions and would appreciate any insight.
Everything I have read says that this strain is VERY uncommon in the US and of the reported cases, almost all are that of people from West Africa. I have never traveled to Africa, and as far as I know, none of the sexual partners that I have had in the past have traveled there or even had relations with anyone connected to West Africa. Of course, I dont have complete knowledge of their histories, but it is unlikely. I also read that this strain in much less transmissable than HIV-1 which gives even more merit to my utter SHOCK that I am positive for this. Also, that non all agency screen for this one. In fact, my sister who was screened for HIV during pregnancy just learned that her GYN does not even screen for this strain, so she could have easily gone through her pregnancy not knowing about it and passed it to her child during childbirth.
My questions are…..
i) Is there any other condition that could cause the Western Blot for this to show positive if it is not?
ii) Is this strain as rare as the internet makes it out to be?
I am a 35 year old female living in the suburbs and do not have any risk factors that would cause reason to think I could be positive. I only asked for a test because I wanted a full STD screening in preparation to get pregnant. And I get this.
Answer
Hi
To answer your main questions first:
i) I don’t know whether this could be a lab error. It is unlikely but if your history makes you doubt HIV, then getting the results confirmed is a good place to start. Most HIV test include a checking proceedure before giving a postivie result though, but it is worth considering.
ii) HIV-2 is predominantly found in West Africa and it pretty rare everywhere else. In the UK less than 1% of infections are with HIV-2. There are slighly higher numbers in Portugal and France. It is pretty uncommmon in the US, but there are cases there.
I can’t comment on the screening tests used in the US, but most recent tests for HIV-1 are also sensitive to test for HIV-2
If HIV-2 infection is confirmed, it is much better that you have been diangosed now rather than later, as you can access care and treatment if needed.
HIV-2 generally progesses much more slowly than HIV-1 and people can go for longer without needing treatment.
It sounds like very poor medical care to be given a result like this over the phone, with no support information, or without seeing someone face-to-face.
I hope you have now been back to see your specialist.
Please let me know if you have other questions.
Hi Mojo,
Thanks. Yes, and as the answer above says, HIV-2 generally progesses much more slowly than HIV-1 and people can go for longer without needing treatment.
There is a difference in treatment though, because some ARVs are not active against HIV-2. These include all NNRTIs (such as efavirenz and nevirapine) and some PIs such as atazanavir.
Therefore it’s important to raise this with your doctor to make sure that the treatment you are taking is as effective as possible.
But HIV-1 treatment guidelines around the world now say that ART can begin at any CD4 count. Perhaps speaking to the doctor about this can help decide if the same applies to HIV-2.
However, as you point out, there seems to be little evidence because of lack of research.
Hi!
Does anyone know when to start treatment for hiv-2 ?
Is it really true that hiv-2 progresses slowly and people can go years without having to start treatment?
Is there anyone around with hiv-2, who can reply to my question.
It is really sad to see that there is hardly any HIV-2 specific research being done and no specific drug being developed for it. A lot of drugs that work for Hiv-1 are ineffective for hiv-2. Infact since hiv-2 is less pathogenic it should be easier to develop drugs for it as well as a vaccine. But i havent come across any development like that. One should note that hiv-2 is becoming endemic in developing countries just like hiv-1
Hi Mojo,
Sorry, I’m a bit confused by your comment.
So, protected sex is a term to describe using condoms when having sex. Having condomless sex can stop HIV transmission. Using PrEP also stops HIV transmission. And having an undetectable viral load means there’s zero chance of HIV transmission when you don’t use condoms. Please see U=U.
Do you beleive you got it from Protected sex or unprotected sex?
Hi Ricky,
There’s no denying that you’ve been treated in an appalling way, none whatsoever. Now that you’re aware of your status are you in a position to approach a HIV consultant, (i-base are UK based so Medicaid isn’t something that we know much about)or even a US based organization?
With regards to HIV it isn’t a death sentence, not at all. It does however need to be treated.
I was at my Primary Care Physicians office today. 9/19/2018. I’m in total shock and disbelief at how I was treated today.
I was there thinking that it was going to be a regular visit. Nope, not at all.
First off the nurse called me back as usual. Took my weight, etc, etc. Then took me to a room. Nothing unusual there or so I thought. Out of the blue she asked me if I had received a letter from they’re office? I said no I hadn’t. She then leaves the room. Comes back with another woman I had never seen before. She hands me a letter stating that they would no longer be seeing me. She said there was too many inconsistencies in my drug test. I had been honest and upfront with my medical history right from the start.
I was then told that they couldn’t prescribe any more pain pills, my Neurotin (for seizures) or my Clonazepams (neurological damage) for my nerves (uncontrollable shaking). I was told that I needed to find another doctor to be my primary care physician.
Well imagine my shock when the nurse came in and handed me a piece of paper that, in the bottom read, that I had HIV Antibodies in my blood test.
There was no consultation, nothing. I was sent on my way crying, angry and in total shock. I was visibly shaken.
I know that this was handled in a very unprofessional manner. Being at the mercy of our great (yeah) medical institutions (Medicaid) and the new laws governing over us. I knew this was a death sentence.
I’m at a total lose of what to do next.
Hi Sai,
Please see the following link:
https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/24/hiv-2-infection
Please tell me name of medicine for hiv2
Hi Susan
It sounds like you have not received much support, or even been treated properly with your diagnosis.
Some viral load tests can measure HIV-2 and there is certainly treatment available. Although NNRTIs are not active against HIV-2, most other HIV drugs work just as well as they do against HIV-1.
Unless your job was one of very few professions where there is a medical reason fro not employing someone who is HIV-positive (surgeon, dentist etc) then the charity yo worked for may have broken the law in discriminating against you.
I will email you privately in case we can help directly with information on this that you may not want to be on a public website.
I am a middle aged housewife that lives in the Mid Sussex. I was tested as I needed an operation and it is policy to test every one. I was not given any counselling before or after I was told.
I cannot find any information on HIV-2. Do you where I can get some? I know there is no viral load count and no beneficial treatment for it.
I have started a support group for people who are HIV in Mid Sussex, though any one is welcome to join, as I felt so alone. I was made to leave the charity I worked for because they said I was a health and safety risk and two weeks ago my husband left me. So life has not been much fun. Why are people so afriad of this illness?