Living with HIV in the Philippines: Email 604: HIV Negative Yet Has CMV Retinitis?

Hi Pozziepinoy,

First of all Godbless you on your great work for PLHIVs. Second, I need help because after testing negative of HIV two times with 6 months interval but my vision is failing and is experiencing floaters. I am suspecting CMV retinitis plus am also having recurring mouth
sores which I suspect is herpes simplex. I have read in one article last July 2013 from sunstar that no any clinic can test hiv within window period in the Philippines. In this regard, can you please help me or give referral to an infectious disease doctor specializing in HIV. My HIV test is still negative today that is why I cannot go directly without referral to an infectious disease doctor involved in any of the hubs. I am worried to go to other doctors who are not involved in PLHIVs as others have experienced being ridiculed or something. Hoping for your reply. Thanks

RX

POZZIEPINOY’S RESPONSE

Hi RX.

Thank you for your email. Thank you for sharing us your concerns.

The HIV test in the Philippines, if negative after 3 to 6 months is already telling that a person is HIV negative. Period. If you believe that you are still sick with opportunistic infections, even with repeated HIV tests showing negative results, then this is something that you need to consider as a physical manifestation of something else.

Let me talk about the "worried well", which a lot of people have experienced even after a series of negative HIV tests. Let me quote Number 17 of the 101 Questions and Answers about HIV and AIDS, 2nd edition by Joel Gallant MD, MPH:

What if all my tests are negative but I'm sure that I'm infected?

I don't want to come down too hard on the "Worried Well-- people who are convinced they have HIV infection despite overwhelming evidence to the contrary. After all, I'm hoping they'll buy so many copies of this book that we'll have to print more for the folks who really have HIV. But the simple fact is that HIV is not hard to diagnose. If the serology is negative 6 months after your last exposure, you're negative. You don't need a viral load, a DNA test or a viral culture. You don't need to see a specialist. You don't need to think about rare subtypes, or whether medications you take are causing false negative test results.

What you may need is a psychiatrist or a psychotherapist. Irrational obsession with disease can be a sign of depression, obsessive-compulsive, disorder or hypochondriasis. Depression and anxiety can cause many of the symptoms that lead the Worried Well to think they're infected. People may also obsess about HIV infection because it's easier than dealing with more difficult issues like guilt or anxiety about sexuality or infidelity.

What you need to do?

If you think you have CMV Retinitis which is an infection that comes out only if one has a weakened immune system, with a negative HIV test result on hand, then just go to any infectious disease doctor in any hospital who doesn't need to be an expert with HIV since you don't have HIV. Like what Dr. Gallant said, you are only HIV positive if your HIV test says so, so just go and get treatment. If you don't know any, just go to the ER of any hospital and they will do a series of tests so you will know what your real problem is. Also, bring your HIV test showing that you are HIV negative for reference.

I hope I was able to answer your concerns. Feel free to email me again if you have other questions.

Stay healthy,

Pozziepinoy