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nowhere left to turn....
Apr 1, 2008

Dear Dr. Frascino,

I am not sure if you will ever read this email, but if you do, I just want to say that I truly think you are one of the most amazing people on this planet. The work you do and the attitude you keep has undoubtedly helped thousands. I only wish it were as infectious for me.

Please do not post this email to the forum. I just need to be able to share my story with someone who will listen, and I am hoping that person is you.

I am at my end. I am a 30 year old hetero male who undoubtedly is HIV+. I know you hear this all the time, but for me it is true.

I had a wild early and mid-20s, having unprotected vaginal sex with a handful of women. Despite my education (graduate degrees...master's and Ph.D.), I pretty much had a blatant disregard for protection. A few years ago, I became a father. It was unplanned, yet it was with someone I was in a committed relationship with. We were together for several years. One year ago, I felt "different". I was having major gastrointestinal distress issues (distressed/upset abdomen, some issues with bowel movements...everything from diarrhea to some mucous showing up in my bowels). I felt some shooting pains in my legs and feet and back of my thighs. Also I thought I was losing some muscle mass in my arms and legs. "Symptom surfing" led me to a very real fear that I was HIV+. I finally tested via the Home Access test. The result was negative. The mother of my child also tested, but I don't know what her result ever was. The stress I encountered from my HIV fear was too much on our relationship. Things ended badly and we have never spoken since.

I went to therapy to try to accept my HIV result. I was too scared to go to my doctor to get a "real" HIV test (not just the Home Access). Slowly I thought i was feeling better. I met a girl. Fell in love. Got engaged in December even! She tested for HIV at an annual gyno appointment in the fall and it was negative.

In january 2008, I started feeling a very strong pain, burning, and throbbing in my legs. It was quite severe and it extended up to my hamstrings (back of thighs) and it even felt like my penis was being affected. the neuropathy-like pains finally subsided after about 6-8 weeks, but since then, i have been completely unable to achieve an erection. morning erections are 100% gone. And my penis and testicles feel and look as though they have atrophied. For the past several years I had had problems with erectile dysfunction, but now I am completely unable to get an erection and the decrease in size is most alarming.

My chest muscles have almost disappeared. I have also noticed that the veins in my arms seem more visible. I started measureing my wrist, biceps, and other parts of my body to determine fat or muscle loss. Since I started measuring things have remained constant, but my body appears smaller than it was. I have put on some weight actually, but it is all in my abdomen and not in my legs, arms, or butt. I constantly have these twitches or sensations in the muscles in my legs (and sometimes chest). My stomach is constantly making noises. Sometimes I have diarrhea, sometimes not.

My mouth is constantly dry, and it looks more white than pink/red.

I am at my end. This all screams HIV. I know what you always say---a negative result outside the window trumps symptoms every time, but from everything I have read and researched....my symptoms either mean diabetes or HIV...and given my age and weight, type 2 diabetes is out of the question.

I have contacted the folks at home Access regarding the potential for discordant results, and they can't go back and investigate my result. The part that is killing me is that i tested...I did the right thing....thought I was negative and thus was safe with my fiance.....but now I have potentially infected her.

Hypogonadism, neuropathy, and dry mouth scream uncontrolled and advanced HIV disease in all the research I have read. The internet is a huge place, and when I research my symptoms alone or together, they continually pop up as indicators of advanced HIV infection. I haven't had radiation and I am only 30, so hypogonadism in an otherwise healthy person is wholly abnormal except in the setting of HIV disease.

I am going to my doctor this week, but it doesn't matter anymore. I know that HIV isn't what it used to be due to the new medications, but for a heterosexual male...it remains more of a stigma I believe. Added to that, I am engaged to be married and coming up with an excuse to call the wedding off will be too hard and the potential for my HIV secret to get out will be too great.

I am not just writing you as a drama queen in hopes you'll respond to me. In fact, I haven't a single question. I just needed to talk to someone and you, though a stranger, are the only person I feel like I can talk to.

Unfortunately, the mistakes I have made are profound and the hardest part is knowing I have hurt people I love.

If you respond, please consider doing so directly and not posting this to the forum. However, if you do, that is fine.

All the best,

A waste

Response from Dr. Frascino

Hello,

Sorry I cannot send private responses to individual e-mail addresses. So I decided to post my response.

Your problem is not HIV infection; it's fear of HIV infection.

Yes I do hear stories very much like yours very frequently. If you read the archives you'll find many similar testimonials from folks absolutely convinced beyond a shadow of a doubt that they were HIV positive, despite their negative HIV tests. And as it turns out none of them really were HIV+!

You report your symptoms "scream uncontrolled and advanced HIV disease." In reality the only thing your story screams is irrational and completely unwarranted HIV anxiety! And it screams that very loudly indeed!

You correctly diagnosed your own problem when you wrote: "Symptom surfing led me to a very real fear that I was HIV+." BINGO! You indeed have a "very real fear," but you certainly do not have HIV! Your HIV test was negative. Your "symptoms," despite what you read on the Internet, are not suggestive of or worrisome for HIV disease! (Your leg discomfort doesn't sound anything at all like the distal sensory peripheral neuropathy associated with HIV disease.) You report your body appears smaller, but when you "measure things," everything remains the same. Erectile dysfunction has many causes, including psychological causes. There is no doubt you have a severe psychological/psychiatric problem. I urge you to see a psychiatrist or psychologist to address your irrational fears. Bring a copy of this post and my response to your first visit and show it to your therapist. That would be the quickest way out of your self-inflicted worried-well hell.

Dr. Bob



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