|On stress, ARS, and burning mouths
Apr 19, 2006
Hi doctor Bob
I just wanted to say THANKS for the job you do. Although you dont know it, you have been a huge source of support for me through what have probably been the worst 3 months of my life.
Here is my story:
Three months ago, I met a group of people who happened to be swingers (and therefore rather high-risk as far as HIV goes) at a beach resort. They were really nice and friendly, so we started drinking and celebrating. When I woke up the next morning, I only had a rather confusing mix of flashback memories (some of which involved nudity) and a small, yet concerning open cut in one of my hands (probably self-inflicted from trying to open a beer or something along those lines). I never saw any of these people again. In fact, I cannot even remember their names.
About a week after, I had a sore throat, and started a miserable journey of daily freaking out that almost destroys my sanity, and that of my fiancée. I was sure that I had at least touched someones genitals with my cut hand, and therefore my chances of getting infected were rather large. I have always been very concerned with HIV, so Ive read TONS of literature regarding ARS symptoms (I am a biologist working with infectious diseases, so a lot of this is readily available to me). I started looking at my body every 10 minutes in every mirror I could find, looking for anything looking like a rash (and found a new pimple somewhere in my body almost every time I looked!). I found what looked like petechia in my forearms and chest. I kept a thermometer with me at all times, and measured my temperature obsessively (and often found it to be above 99 degrees).
I had a negative test at week 2, but I knew this was too soon to mean anything, so my anxiety grew on
About 4 weeks after the event, I experienced 2 or 3 nights of profuse sweating, and I pretty much became convinced that I was infected. I slowly became so anxious and depressed that I lost any smear of happiness in my life. I didnt feel like talking to anyone; Id drag through the working day, come home, and watch TV until I fell asleep, usually for no more than 4 hours a day, waking up several times (often assaulted by terrible nightmares). All along, my poor fiancée (who lives with me) had to put up with this sad, sad person I became, often helping me perform the simplest tasks of life, which I had no interest in performing. And every time I looked at her, I felt like crying.
Around this time, I came across thebody.org, and reading the WOHOOO! stories of other fellow paranoids made me feel that there might be light at the end of the tunnel.
The day I had scheduled my 8-week test, I woke up and found my tongue to be cracked at the tip and sore. By the next day, I suddenly started having a burning feeling in my tongue that continues to this day. While searching for answers on the net, I came across the infamous 2001 posting at thebody.com where somebody suggests that burning mouth syndrome (BMS) in males is an absolute marker of HIV infectionand almost went crazy!!!!. I had to start drinking pills (which my doctor prescribed) for anxiety and depression, just to be able to make it through the day. And I started having thoughts of suicide.
When the 8 week test came negative, I felt a little better, but the shadow of that posting where three supposedly expert doctors agree on the fact that a burning tongue can only mean HIV infection chased me constantly (although the response from Dr. Reznik was that he disagreed). Plus, by this time, Ive been scared to death for so long, that my anxiety had become chronic, and really hard to get rid of.
A few days ago, I had my 12 week test, and when it came back negative, it gave me the strength to look back and put things in perspective: I had been self-diagnosing all along. Although some of my symptoms (such as rashes, sweats, and the burning tongue) could seem ARS, they were not even simultaneous, and could also be explained by the huge amounts of stress I put myself through. I even found a publication by a medical association that clearly states that there is NO link between BMS and HIV (apparently, many people have had this concern).
So, Ive decided to trust the facts instead of the wacky-side of my mind, and celebrate my negative status. Ive also decided to seek for help regarding my obsessive-compulsive behaviors.
My advice to those of you who, like me, cant help but being concerned:
-Trust the facts and the odds; since HIV is (thanks god!) not too easily transmitted, they are in your favor, especially if you dont know the status of your possible source.
-Stressing is a sure-fire way of creating ARS symptoms. The rashes, sweats and pains will be real, but their cause will be in your mind.
-Be skeptical of everything you read. Each situation is unique.
-Trust the doctors at this website. They know what they are talking about.
-Get tested as soon as possible.
-Post your story on the forum. It really helps to know that youre not the only one going through this kind of misery.
-If you can, donate to the cause.
| Response from Dr. Frascino
Thanks for taking the time to write in and share your story. I'll gladly add it to the other testimonials in the archives in hopes that it will help others suffering through "window pains."
Congratulations on your negative test. WOO-HOO! I'm also glad you are seeking help for your anxiety/depression and OCD behaviors.
Stay safe. Stay well.
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