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My "Genital Herpes" Experience

Sep 13, 2010 - 3 comments
Tags:

Genital Herpes

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Herpes

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ORAL HERPES

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HSV-1

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HSV-2

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herpes test

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test

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HSV-2 Test

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CPPS

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prostate

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outbreak

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diagnosis

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false positive

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false negative

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STDs

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Anxiety

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experience

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OCD

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Obsessive Compulsive Disorder



So, if any of you weren't aware, I was diagnosed with HSV-2 in May of this year, 2010. It was pretty difficult for me, as I was a bit of a reckless youth. But, as I have gotten older, I was more careful. I cleaned up my act, and swore to myself that I would be a better person. It sent me a message I guess that said "you can never be careful enough." Which is, you know, true in any situation. It also made this quote from the movie "Magnolia" to be very true: "We may be through with the past, but the past ain't through with us."

Last month, I came here to MedHelp in the herpes forum, complaining of some rather odd issues involving my body. This was after my HSV-2 diagnosis. So, I posted about it, and the thread ended up being pretty long. I went to some extremes, and as a result, I pissed off a lot of people, because of what gracefromHHP and petal130 had told me. For example, I had to repeatedly call the central lab that did my testing to find out how the test was performed, the parameters, and what have you. They became very irritated with me (and I don't really care, any company that treats me like I'm an idiot can go get bent). I finally got through to someone one day who told me my test method, and it was ELISA.

Anyone who has come to MedHelp, posted their results, or engaged in conversations about HSV testing, has probably discovered by now that the HSV IgG ELISA test is regarded as a poor test for HSV. If you have had one of the HSV viruses already (and by age 50, at least 90% of us do), there's a very VERY strong likelihood that your test for the other viral type be a false positive. In May, I was positive for HSV-1 with an IgG of 5.11 (I have had HSV-1 in the form of oral coldsores since I was a child). I was also positive for HSV-2 with an IgG of 1.72.

So, my doctor at that time told me that I did indeed have genital herpes (although I wasn't having any outbreaks), and I started experiencing urethritis following my diagnosis, and pain all around in general. The doctor ran a urine check for Chlamydia and Gonorrhea to make sure it wasn't an STD that was causing the urethritis, and the test came back clean. I also thought he ran a complete urine check, but I don't see evidence of it from the labs I have received back, nor was my insurance billed for it.

Without even researching or evaluating further like any normal doctor should do, he told me I had "herpetic urethritis", and the symptoms I were experiencing were due to the virus. I begged him to give me something for it, and I suggested that we experiment with antibiotics, and see if it something we haven't been looking for. But he shrugged me off and refused to do this, and made me feel pretty sure that I had genital herpes. I lived with it for 4 months, 4 month of my life that I WANT BACK.

I was becoming more aware that my doctor was a poor practicer, so I went out and got a new doctor, the same doctor that helps me mother manage her diabetes. However, I continued on with my previous doctor's assumed diagnosis, and she accepted it. Last month, thanks to grace and petal's advice, I went in and asked that she run a confirmatory, because I had just discovered that the test they ran on me was only a "screening" test. She also ran a "Ureaplasma/Mycoplasma" test as well, which would explain the symptoms I was experiencing, that I had also  experienced months ago.

Last Wednesday, I get a call. The nurses say that the doctor wants me to come in, and talk to her about the results. They then tell me that not only am I negative for a Ureaplasma/Mycoplasma infection, but I am HSV-2 NEGATIVE. This test was performed by the immunoblot method, which along with the Western Blot, is used for confirmatory testing for the virus.

This is 3+ months following a possible exposure to the virus. 4+ months since protected intercourse, and unprotected oral sex. The result is definite. I know for a fact that it isn't a false negative. I would be VERY surprised if we somehow ended up running the test again and have it come back positive. Besides, my doctor is certified in diagnostics, and specializes in molecular medicine. She told me that there would be no way that this would turn positive, due to my current sexual history.

With all of this said, there are several lessons to learn with this.

1. BE CAREFUL, AND ALWAYS PROTECT YOURSELF. I had one hell of a risky sexual life when I was young. I had plenty of Male to Male sex, and I had unprotected sex a few times too. I'm quite surprised that I never contracted an STD to begin with, for I was so irresponsible. As I grew older, I saw some of my friends get infected with HIV. Some of those friends would end up getting diagnosed with AIDS, and even one would die from it. Watching this made me very scared, and as a result, I became obsessive compulsive about condom use. I didn't want harm to come to myself, or to others.

2. TRUST YOUR INSTINCTS. My previous doctor talked me into believing that I had genital herpes brought on by HSV-2. I let myself believe this for almost 4 months, but I knew in the back of my mind that something else was going on. I wanted more done to make sure everything was right, and my previous doctor talked me out of it. Because I let him influence me, I proceeded to live the next 4 months of my life in constant pain, isolating myself from the world, and my best friends. If I had only been more assertive with my instincts, this never would have happened. However, this would not have been the first time I have learned this lesson this year. Let's just say, don't let others take advantage of your sexual abstinence. Sex can be a beautiful thing, but it can eat away at you in more ways than one.

3. ONLY *YOU* KNOW YOURSELF. When I was first diagnosed, I went through some pretty bad denial about it. Mostly because I didn't experience what were regarded as "common symptoms", and I felt like this wasn't happening to me like this. It felt so unfair, and I knew it had to be something else. But everyday, I would talk myself out of it, accept it, and tell myself "GROW UP." I talked myself into letting the torture continue. To be honest, at first I felt kind of insulted by petal130 and gracefromHHP. This was because I felt as though they were trying to talk me back into denial. They did so, but only because they knew it was best for me, as weird as that sounds. Now I don't have to take Valtrex anymore, which caused me to have some pretty awful headaches at times, and it played games with my stomach. If it were not for these 2 forum users, I would probably still be going to bed every night with a horrible stomach ache, and taking medication for something I clearly don't need.

4. MAKE SURE YOU HAVE A GOOD DOCTOR. My new doctor has an AMAZING MIND. She is very good at what she does, and she made a very smart decision in choosing to have a family practice. As I have mentioned before, she is a certified diagnostician, and she specializes in molecular medicine as well. People who specialize in this are very familiar with diseases, how they function, and how they react. Most of her patients are older patients, however. My mother is 65 and has some pretty bad health problems going on, but thanks to our doctor, my mother's medical condition is pretty damn good right now. It isn't because of this that I have complete confidence in her, but the fact that she treats me like a human being is what matters the most. If your doctor treats you like a piece of junk, or dismisses you, it's time to pack up and find a new one. I changed my doctor because I could sense a bit of ignorance (and maybe even homophobia) with my doctor. He was fine with me the day we met, but my care provided by him seemed to dip lower since I told him I was a homosexual with a past sexual history of unprotected sex. Doctors should not judge their patients in such a manner. Yes, they can tell them they are at danger, but you need to treat a patient with respect in the process.

Anyways, I just thought I would share this all with you. I hope some of you who have had this HSV ELISA will read this, and I hope this will encourage you to do confirmatory testing. Remember, your doctor cannot refuse to test you, for that would be unethical.

You also don't want to be living a lie for 4 months like I did. I was just about to re-enter the dating scene, and I was in a transitioning phase of my life where I was about to kick my somatic OCD and hypochondria. But all of these doctors come in, and they think they know they are doing. They think they are sending out for the right tests, making the right diagnosis, but in reality, there's a bigger picture here. Not everything is as it seems. Sometimes the theory of "Occam's Razor" does not apply, a theory which states that "with all things being equal, the simplest answer or explanation is usually the right one."

I turned down so many dates, and there were so many times I could have been spending my nights in the arms of another person. I could have been falling in love right now, and I could have been living in the city, and I could of had a new job. Instead, I'm now perfectly content with being lonely, isolated, and sex-less. This probably isn't a really healthy thing for someone to be thinking, but, that's just how things turned out. However, I am now getting therapy for this.

So remember, every action has a negative, and a positive reaction. Doing shady stuff with shady people probably really isn't a good idea. It will either come back to haunt you physically, or mentally. In this case, it was mental, and it has progressed so far in that regard that it has turned physical. This could happen vice-versa as well.

I'm going to end this here. I have a follow up today at 10:45am to discuss with my doctor on what we should do next. I would at least like 5 hours of sleep!

Thank you for reading.

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Update September 13th, 2010, 1:18PM MST: My doctor went over the results with me, and has referred me to a urologist I will be seeing within an hour. She says my HSV-1 test wasn't unexpected, and that I can be certain that I don't have, nor have I ever had genital herpes. I also wanted to see if multiple site infections with HSV-1 were possible, and she told me that the genitals really are not the environment for HSV-1, and getting HSV-1 genital infection while already having an HSV-1 oral infection is not possible. I already had an IgG anti-body to HSV-1 when I was a kid, and that plays a factor as well, for it in a sense "protects me" from acquiring a new infection anywhere else.

Update September 13th, 2010, 4:00PM MST: Urologist has told me that what I am experiencing is definitely not being caused by an infection. Beginning treatment for Chronic Prostatitis.

Update September 24th, 2010: Continuous and uninterrupted therapy with my therapist seems to help alleviate both my health anxiety, and overall anxiety. Because of this, it is helping my newly diagnosed condition quite well, and I don't suffer from much pain as I used to.

Update April 2nd, 2011: Several corrections have been made to this article. However, those corrections only involve grammar, along with sentence structuring. I have also added tags to the post, so people who are searching for information on HSV-2 and Herpes testing can find this article. I have also been diagnosed with Obsessive Compulsive Disorder, and this has a lot to play with this story.

Comments
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by gracefromHHP, Sep 13, 2010
AWESOME post and not just because you said nice things about me either :)  I'm just so glad you listened, got confirmatory testing done and found out that it really wasn't hsv2 going on.  I hope others read this and take it to heart :)

grace

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by JessyJames2010, Sep 14, 2010
Flow1987

I knew this was your post before checking up on it (though did just check to makes sure).
I was reading your story as it unfolded and was very happy for you for the post you made on:
Sep 08, 2010 06:58PM reporting a negative test for HSV-2.

CONGRATS and yes, indeed great Journal Entry.

Well said on "lessons to learn" and about "doing shady stuff [...] will come back to haunt you [...]"
I do hope people are reading this one.

Best of luck in everything.



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by Mistakeguy789, Oct 08, 2010
I think a challenge is that these types of stories come after the fact.  If we had a way to help our fellow members here prior to such acts and help others in our community to be aware of these types of stories this would help on spread of more dangerous type diseases.  

Grace and petal are the best.  They will keep you on track and not leading you wrong.  Great post!  :-)

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