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jimmyDS

Wrong diagnosis for ~6 years

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jimmyDS

I contracted this virus quite young, a few weeks before I turned 17. I had only had sex once, but then a few months later I was messing around with a girl that I didn't know at all (didn't have sex, just playing around, mouth to genitals and genitals to genitals, no penetration though), and I ended up contracting this from her.

My first OB had a big fluid filled lesion on the underside of my penis, and a few others (one on the tip of my penis), but they went away fairly quickly and I just said to myself great, now I have a STD... I was a senior in HS and didn't really have the means to go to the doctor without breaking the news to my parents, so I avoided it. It sucked being a senior in HS carrying this around, but what else was I to do?

Later, come spring time, I had my second outbreak, and this one was more like the typical first outbreaks you hear about. I was sick, my genitals were very sore, it was so noticeable I ended up going to the ER under the guise of a possible testicular torsion as to not tip my family off. Well low and behold, they diagnose me with genital warts (I have absolutely no idea why), and I naturally believe it. I never actually got tested for anything, just a visual diagnosis. I've been treating this like HPV for a long time, I even was using Aldara that I had previously for some warts on my foot. I think it was just aggravating the situation even worse =b

I usually get sores on my thighs, but they never burst. They are always like pimples that will end up being painful to the touch for a day or two, then they slowly go away and don't hurt anymore. Then occasionally will get them in the pubic hair area, again like pimples, but these ones usually go away faster than the ones on my thighs. My penis also has some wrinkles on it when flaccid that weren't as noticeable before. I hardly see herpes looking like this on online pictures, the stuff you find online is outright frightening, so why should I doubt the HPV diagnosis?

A few weeks ago I got a flat sore on the shaft of my penis, and I thought, this looks and sounds exactly like HSV. And you know what, genital wart diagnosis never made any sense to begin with, and the treatments never helped at all! All of a sudden everything started to make sense, and in fact I was not living with the oddest cast of HPV, rather a very typical case of HSV.

So what's so nice about this? I finally have a clear path of treatment (going natural, for now...), and I now have a clear understanding of what I'm dealing with. No longer am I stuck thinking I have one thing yet the literature is bringing me absolutely no closure on my condition. Best part, these forums and this website have rapidly started to build my self confidence back up, and I'm already starting to look at women again and say "hey, maybe I shouldn't just avoid women as a practice, maybe she'll understand down the road and there is a possibility I don't have to live my life alone anymore"

I haven't gotten an official test from a doc yet, I'm sure I'll do that soon enough. Maybe when my next OB is fresh I'll head up to the local clinic and finally get a proper diagnosis. For now though, I'm back in college and working on my degree, another thing I never thought I'd do :twisted:

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gotitsowhat

Glad to know you are coping well

and that you've pulled it together enough to continue your education.

However, you should get a blood test so that you can get an official diagnosis, know what type you have and to clarify things in general. Most colleges have student health clinics and people in them who understand a lot about herpes and are sympathetic. A blood test will help you know which type you have which may impact possible treatment and prognosis.

You should know that you are certainly not alone in a delayed or wrong diagnosis; doctors absolutely HATE to diagnose herpes and will go to great lengths to avoid it. I had to see SIX different doctors to confirm my own personal diagnosis. The doctor who finally did the test (the others refused, saying I did not need the test since it was clear it was not herpes) said he had been told my his colleagues at Kaiser that doctors won't diagnose people with herpes if they can help it because they know what it does to the patient's self-image, confidence and life. And also because they can get involved in law suits over it. So they avoid the diagnosis as much as they can. Since it is not a fatal virus, they assume it really doesn't matter much if you know about it or not. I think they are wrong but that's my own take on it. I think that it only causes more confusion and worry and, as in your case, works out much better when the truth is known.

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NeedToKnow

Don't be afraid to go to the health center at your college. You should get tested for other STDs also since some of them don't have symptoms. They usually will test for HIV and the bacterial STDs for free and the herpes blood test may cost a few bucks. It was about $25 for me at a school health center. Just go in informed and insist on a type specific IgG blood test for Herpes. Say you want to be tested for both type 1 and type 2. The brand name of the usual test is Herpeselect.

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jimmyDS

I looked into it, my college doesn't offer anything, but they do link to the county's testing facilities. I gave em a call but they are closed until Monday, I'm planning on calling when they open on Monday and hopefully going there as well to get tested.

Herpeselect is the gold standard for type specific? I'll ask if they have it when I give them a call.

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NeedToKnow
Herpeselect is the gold standard for type specific? I'll ask if they have it when I give them a call.

Western Blot is the gold standard but that is usually not used because it takes a long time to get the results and it's expensive. HerpeSelect is almost as good but is a lot cheaper. Here is a link to a quick reference guide for some herpes tests. You can print it and take it with you and ask the doctor about it.

http://www.ashastd.org/pdfs/blood_test.pdf

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jimmyDS

Thanks for that link NeedToKnow, it helped lots.

I called the clinic today and they wanted $25 for the STD tests and another $74 for the herpes test. However, they said the blood test basically means nothing, and the only test that means anything is the swab test. I asked them if they had any of the type specific blood tests and the nurse said no, blood tests are worthless for herpes and cant differentiate what type one has. I told her they should look into the HerpeSelect test, and it could tell the difference, then she said "I believe you", and that was the end of that conversation.

I ended up using tSTD.org , bought the herpes test and got my blood drawn within 90 minutes of ordering from their website. The actual time I was in the lab office was about 5 minutes. Sooo much easier than a doc's office, and costs about exactly the same too, except I get the proper tests done. I wasn't looking forward to a day at the doc's but this is sooo much easier I'm amazed.

Now I get to wait, the tSTD lady said it should be in by Wednesday, if not Friday or Saturday (because of xmas holiday). Not that I'll be shocked when it comes in positive, but it'll be nice to finally have this all officially confirmed and behind me.

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NeedToKnow

Thanks for the link to tSTD.org. It may be cheaper to go to a regular doctor, but it seems like it's worth it to not have to go through the hassle of trying to explain why you want the test and getting talked out of it.

And I guess the reason they say the blood test is not entirely useful is because people can get false negatives because they haven't produced enough antibodies yet (recent infection), or if you have HSV-1 already, then a new HSV-2 infection may give a false negative. And also it doesn't tell the area where you are infected, and it's not entirely clear how infectious you are even if you are positive.

But if you are positive, then at least you can tell any partner all the facts and let them decide.

Best wishes

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