Question
Recently diagnosed with HIV-2
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.
22 February 2008 • Related: All topics, Newly diagnosed
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.
Answer: Simon Collins
Comments
Susan • 3 March 2008 11:06 pm
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?
Simon Collins • 5 March 2008 4:58 pm
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.