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You told me that I didn't have HIV - now I have been diagnosed as HIV positive

Jan 13, 2004

Dr. Bob,

I do not think you will want to post this, but I hope you will read it:

I wrote you some months ago and explained a high risk HIV exposure with really bad symptoms 10 days later and a declining CD4 count and ratio.

I mentioned that I had been HIV tested by ELISA and by PCR DNA and by Roche 1.5, all negative...but that I thought that I might still be HIV positive because of chronic viral symptoms (lymphs swollen, mouth sores, possible thrush, fevers, chills etc.).

You said that I had overkilled with the tests and that there was no chance of my having HIV - you were absolute in this and glossed over the CD4 issue and CD4/CD8 question, move on and get over the anxiety about HIV.

Well, I have just been diagnosed with HIV 2, which explains all that has happened. No, I did not have an exposure to someone from West Africa. But, I had an exposure to someone from Latin America, as I explained to you - and it seems that he must have been infected by someone from West Africa.

So, please don't take this the wrong way, but I do think you should be a bit more careful before pronouncing someone as 100 HIV free, because they had an HIV 1 Elisa test...even if they have never had direct exposure to someone in an HIV2 high risk category. Fact is that, unless someone has said they had both HIV 1 and HIV 2 Elisa's after three months, I think it is wrong for you to tell them that they are HIV are really great, but a little too quick on the trigger there. I think you should be ensuring that everyone did have an HIV 2 test before a 100 statement that they are not infected. HIV 2 is around and you can get it from someone who got it from someone who got it from someone else from West Africa...

So, now I face HIV 2 in the US where little research has been done on treatment without the ability to do viral load testing and deprived of all the non nukes drugs for therapy. That really sucks! I don't even know if the resistance tests work for HIV 2.

Anyway, please be a bit more careful in ensuring that people have been properly tested for HIV 1 and 2 even if not in a risk category for HIV2 - I admire you and very nearly just accepted your answer as gospel that I didn't have HIV...which could have left me untreated for years as my immune system declined. I understand why - because HIV 2 is rare, but again it is around in the US and does infect people, even Caucasians like me who were in the wrong place at the wrong time.

Thanks for listening.

Response from Dr. Frascino


I'm sorry and somewhat surprised to hear that you have been diagnosed with HIV-2. First off, are you seeing an HIV/AIDS specialist, and has your diagnosis been confirmed? If so the CDC will need to be informed ASAP. As you (and I) have pointed out, HIV-2 is extremely rare outside endemic areas (West Africa). It is also harder to catch. HIV-2 is 5-8 fold less transmissible than HIV-1, and it's rarely the cause of vertical transmission. Seventy to eighty percent of those with HIV-2 would have positive antibody tests, depending on which routine ELISA test was used. There were 78 persons diagnosed with HIV-2 infection in the United States between 1987 and 1998; 52 of those were born in West Africa and most of the rest had either traveled there or had had a sexual partner from that region. I should also point out that some screening centers already used combined HIV-1 and HIV-2 testing, although this is not recommended by the CDC for routine testing. An HIV-2-specific antibody test was first licensed by the FDA in 1990, and became mandatory for screening blood donors in 1992 in the U.S. Even considering all these impressive statistics, could it happen? Yes, it's possible. Extremely rare things happen extremely rarely, hence the name "extremely rare."

Do I think HIV-2 testing should be routine? No, I don't. I agree with the CDC recommendations. HIV-2 testing should be done for:

1. Natives of endemic areas. 2. Needle-sharing and sex partners of persons from an endemic area. 3. Sex partners or needle-sharing partners of persons with confirmed HIV-2 infections. 4. Persons who received transfusions or non-sterile injections in endemic areas. 5. Children of women with risk for HIV-2 infection.

If your case of ELISA-negative HIV-2 is confirmed, it should be reported to the CDC. I'll also point out that viral load tests are not accurate for HIV-2 strains (or non-M subtypes of HIV-1).

My recommendations remain the same. As I have mentioned before, if someone has significant and persistent CD4 decline, and is testing negative for HIV, they should see a qualified immunologist for an evaluation. There are a variety of potential causes, many of which are statistically more likely than HIV-2 infection, such as idiopathic CD4 lymphocytopenia (ICL).

Last, why wouldn't I want to post your comments? This is an information website. We are here to provide information, advice, and help to the best of our abilities. Good luck and please make sure your diagnosis is confirmed by an expert. One positive note is that HIV-2 frequently has lower viral loads than HIV-1, and it is associated with a slower rate of both CD4-cell decline and clinical progression. Although, I don't have the details of your "declining CD4 and ratio." If it was rapid, again that would call into question HIV-2 as the potential cause.

Keep me (and the CDC) posted.

Dr. Bob

thanks for helping me

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