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10 years later, plus one

Jul 29, 2008

Hi Doctor,

Last year I noticed some changes in my body and wrote to you (10 years later, is it AIDS?). I had been tested (negative) but was still very concerned about the changes that I saw (white tongue, weight loss, gingival sloughing, and purple marks). You were very reassuring and it helped me get by. I went for a quick test afterward just to help put my mind at ease and that test was also negative.

Unfortunately, I find myself scared again. I have been experiencing ongoing abdominal pains for the last few months. I also have a great deal of flatulence and diarrhea. I have lost about 20 pounds in the last few months and I am alarmed. On my last visit to my optometrist (this spring), he identified retinopathy, which he attributed to blood pressure or cholesterol. I had a physical after that and both my blood pressure and cholesterol levels are fine. I have had a lot of blood work done and stool samples taken and nothing abnormal was found, other than my B12 levels being slightly down. My dentist thought that he saw lichen planus and hard palate discoloring and sent me to an oral surgeon but the oral surgeon saw nothing.

I have also been experiencing peripheral neuropathy, lots of sneezing and clotted nose, itchiness, lots of small purple pinhead size dots all over my body and my tongue is still hairy. I had noticed small circular bumps on the back of my hands before but just the other day while driving I noticed that there are lots more of them. I am concerned that they might be molluscum.

Something else caused me concern recently. I have been with my girlfriend for 11 years now. I started to see her just after I was with a woman who I now believe to have been HIV positive. For the first few months that I was having sexual relations with my girlfriend, her chest would get pink afterward, like she was developing a rash. We joked about it at the time and since. Recently, I searched online and found that there is an HIV rash that some people get when first exposed to the virus. My girlfriend also has a white tongue and has been experiencing migraines and lethargy.

My question, doctor, is whether there are some other tests that I should take to determine whether I have contracted a form of HIV that is not detectible in the normal HIV-1 and HIV-2 tests? Is it possible that I do have HIV but just no antibodies, especially 11 years later?

Response from Dr. Frascino


Despite the new information, my assessment remains completely unchanged. "A negative HIV test trumps symptoms each and every time. HIV is not your problem. No way. No how. I'll reprint your initial question and my response below.

Because the issue of possibly having HIV obviously continues to haunt you, despite overwhelming and irrefutable evidence that you are HIV negative, I very strongly recommend you seek psychiatric/psychological evaluation and treatment to help you confront your totally irrational and unwarranted HIV fears and to finally accept the truly wonderful news that you have dodged the HIV bullet and are conclusively HIV negative.

Good luck.

Dr. Bob

10 years later, is it AIDS? Sep 7, 2007

Ten years ago, in 1996, I was a train wreck and on several instances of being inebriated I ended up having sex with different women that I knew only casually. I now believe that one of those woman was HIV positive, based on comments from friends. In 1996 I also started a very committed relationship with a fantastic woman and have been with only her since.

In the last 6 months my tongue has turned white (pink in front, cottage cheese at the rear but nothing white on the sides), in the morning there is a prevelant white film along my gumline that can be removed with tissue, my gumline has receded, my vocal cords are sore, I have lost weight (approx. 5%)and last night I noticed that I have just developed 2 purple marks (on my heel and toe) that resemble pictures that I have seen of Kaposi's Sarcoma. My girlfriend's tongue has recently turned white and she has the film along the gumline. Her gumline is also receding. Someone else that I know, who was with one of the women that I had been with in 1996, is also experiencing a white tongue.

The perplexing part of this is that in 2002 my girlfriend had herself tested for HIV and Hep because she was doubting my commitment. The results were negative. I occassionally give blood and last did so in 2004. No HIV was detected (they use nucleic acid screening and I have confirmed that nothing was detected). Two months ago my doctor had me tested. He reported that the result was negative but he did say that he thought that I should be retested. In my joy from hearing the result I neglected to ask him why I should be retested. Three weeks ago I saw another doctor (while mine was away) and after examining my neck and mouth he asked questions about my weight, my bowel movements and my vocal cords. He did not offer any opinion and told me that he would wait and let my regaular doctor deal with me.

Could this be AIDS, despite the test results?

P.S. I hope this question didn't get posted repeatedly, since I was having trouble with the verification number.

Response from Dr. Frascino


Your potential exposures were a decade ago. You have had several HIV-screening tests in the interim, including one as recently as two months ago. All of these tests were negative. Your girlfriend has also had a negative HIV test several years ago.

A negative HIV test trumps "symptoms" each and every time.

HIV is not your problem. No way. No how. You do not have Kaposi's sarcoma. You do not need any additional HIV tests, assuming you've had no additional exposures.

If you're noticing funky stuff in your mouth, see your doctor or dentist. One thing that's certain: the cause is not HIV/AIDS, OK?

Sorry about the verification number problem. I have absolutely no control over the technical aspects of this site.

Dr. Bob

PLEASE help! I'm so scared.
Please reply. I am desperate!

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