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Tested Positive after being mis-diagnosed


LoveMay

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A smart acute care dr had the smarts to draw blood and culture me for herpes on Friday, and the results came back yesterday positive in both the blood and the culture for HSV-2.

About a month after my boyfriend & I started sleeping together I had a horrible infection. Blisters all over my vulva, with a fever and just general aches & pains. I was miserable and went to the ER on the 4th of July and was tested for chlymedia-which was negative-and sent home with a high dose of antibiotics. The ER dr said I should see my gyno about possible herpes but that it was an extremely atypical presentation. For various reasons (basically my own stupidity) I didn't go to my gyno when I had another bout of this in October, but went in Novemeber. My gyno dismissed them as 'hair bumps.' Finally went to an acute care dr that I know through a friend who said 'I think this is an extremely atypical presentation of herpes.'

So I'm positive for HSV-2. My boyfriend and I had already talked about the possibility for testing positive for this, but that doesn't make it 'suck' any less. I'm 23 and he's 37, we just bought a ring and will be engaged soon, so I know I'm in a committed relationship but he feels horrible, horrible guilt that he probably 'gave' this to me.

I don't think I'm dealing with it yet-because I feel nothing.

My gyno gave me an rx for an anti-viral and left it up to me to use daily or only during an outbreak.

Thoughts?

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welcome to the board. I dont know why the emergency room did not do a swab on you for herpies especially sense they expected it to be herpies. as for your gyno he was plain stupid. I am glad your in a commited relationship. I understand your feeling numb that is normal.

i know it hard and i know your bf must be feeling really guilty. Did he know before hand that he had herpies and if so why did he not tell you?

Try to find the silver lining in this if all possible at least with both of you having herpies you can do away with the rubbers and you know your spending your hole lives together and he loves y ou

It really hard to say who infected who. some people get herpies and dont show symptoms that they have it and they dont ever know which could be the case with your bf

the first ob is usually the worst and some people never have another ob. look to the sidebar there great info there and if you go to newly diagnosed and you have to search there for thread intiled newly diagnosed must read

there a really good videeo on herpies that you and your bf should watch also a handbook

there also a handbook on the sideboard

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Unfortuantely he was unaware that he had herpes, if in fact, he has it at all.

I've only had two other sexual partners and one had had no sexual partners before me. The odds are in the favor of my current boyfriend having given it to me, but we'll know for sure after his blood test.

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Yes, after you get your partner's results, the antiviral question will be much more clear.

If he doesn't have herpes, taking the antiviral med could help reduce the chances of him acquiring it.

If he does, there is no need for that.

If you get lots of outbreaks, you can go on suppressive therapy to deal with them.

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What I'm not understanding is why a doc would consider blisters all over your vulva as an "atypical presentation."

Just goes to show how unreliable visual exams are for diagnosing herpes. Even when the symptoms are classic, some docs won't do the right thing.

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Okay, that's sort of what I thought. If he tests positive, then the supression method is really just a moot point and I only have to worry about outbreaks.

He has had issues with his testicles for a few years and saw a dermatologist who has had him on and off a steroidal cream-who knows...maybe he's been mis-diagnosed as well.

Because the herpes was SO bad my first outbreak and went untreated for what it actually was, it developed into bacterial staph and pelvic inflammatory disease. Not fun.

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Because the herpes was SO bad my first outbreak and went untreated for what it actually was, it developed into bacterial staph and pelvic inflammatory disease. Not fun.

Oooooh...not fun at all. PID is horrible.

I really hate the use of steroids. They cure nothing --- only mask and suppress things.

My thoughts are with you, both of you, for accurate diagnosis and proper, successful treatment.

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    • sgt98
      Hey @WilsoInAus ok thank you, I will do my best to move on and stop trawling forums haha. 
    • WilsoInAus
      Hey @sgt98 but there is no feasible infection or outbreak to suppress and antivirals do not suppress an initial outbreak in any event 
    • sgt98
      Thanks @WilsoInAus I understand apologies for this but the only other thing I am worried about is that I did take a course of Famvir on day 1 as I felt like I was having an outbreak of cold sores and am worried that has suppressed the initial outbreak genitally 
    • WilsoInAus
      Hi @sgt98 it is not feasible to obtain a HSV-2 infection from receiving oral sex - only HSV-1 is feasible but you've already got that and immunity from any further infection with HSV-1. You do not need any further tests for HSV. You're feeling regret, try to forgive yourself and calm down, let the rational take over. You know the answer here and it won't be long until you believe it too.
    • WilsoInAus
      Hi @NerdP423 and welcome to the website. You raise a lot of points and I think the best way to address your concerns is add some comments at each key point. I've copied your note again below and added these comments in square brackets. I appreciate any insight (even speculation) as to what has been going on with me. I'm a 37y/o M. I last was intimate with a new partner on 2/11/2022, and a few days later started having a huge amount of discomfort in my face. [The first thing that happens though is that herpes causes lesions or at least some skin based disruption. Other symptoms are then related to the actions of the immune system responding to the virus. Without lesions, it is highly questionable that the ailment is related to herpes, yet testing is useful if you have concerns as you have done so.] About a month after that [herpes causes issues within days, if the first 'symptoms' are a month later - its extremely unlikely they are related to herpes], significant discomfort downstairs, however every test I have ever taken for HSV 1 and 2 has been negative. Here are the details: Face: Previously, some significant tingling and itching on the right side of my mouth, lips and chin (still there, but milder) [herpes does not cause general tingling and itching, it can cause a reasonably concentrated feeling of itch/throb from which a herpes lesion appears within hours]. Occasional hot flashes near my right eye, cheek and ear [herpes does not do this, it may be a immune response to something, or stress]. Sometimes it will feel like the skin is crawling on the right side of my face [herpes does not cause a general crawling sensation]. Never seen anything that looked like a traditional cold sore [that's extremely telling, even people with associated atypical symptoms will have experienced herpes lesions]. Occasionally, the left side of my face will have a momentary feeling of skin crawling, but it's so mild that I am not really worried about it. Downstairs: Thankfully, most of these are now milder than they were before. Occasional momentary pinch of pain at the base of my genitals. [herpes does not cause a general pinch feeling.] Aching pain in my boxer area (groin, leg folds) [nor this] Occasional feeling of cold in my boxer area, butt, or lower back. ( also in my shins and occasionally even my arms) [nor this] On 4/30/2022, I had been in discomfort for almost two months. I scratched an itch, noticed it hurt, and then checked - I did have an open ulcer down there. Took myself to the ER to get swabbed, came back negative. [If this was a PCR then this will be very conclusive.] Practitioner said it may come back negative because it was already open. However the lab report noted that it definitely didn't look like what you'd expect a typical first herpes outbreak to look like [how would the lab know??]. All blood tests negative so far. I had two western blots, the second one was nine months after exposure. [Two negative Westernblots!!! Many that's real convincing]. All other swabs also negative. I went to urgent care, because I know the timeliness of when the Swab is taken matters. One time, a swab was not done, because practitioner said it was folliculitis and wouldn't swab it (It was at my belt line). [Belt line is highly unlikely to relate to herpes.]   A blood test revealed I had low-ish B12 (technically in range, but at the very low end, especially for a man of my size). I had a series of B12 injections, and I am taking a B12 supplement. I am not taking any lysine or arginine at the moment. I was taking the Arganine to see if I could induce an outbreak. [This is irrelevant, there is no known linkage between herpes outbreaks and arginine/lysine intake - its a myth - and B12 infers nothing.] I think what I am asking is - has anyone here ever repeatedly tested negative over and over again over long period of time, before getting a definitive answer, be a positive test, or something else? [The answer to this is: Extremely few people with a HSV-1 infection and even more rarely HSV-2 test repeatedly negative on Westernblot and actually carry the virus. Of the cases that I know of that had delayed detection by a swab and negative blood tests in the meantime (and that's only 3-4 cases), they had some form of lesions within days of infection but did not obtain a swab for various reasons and then obtained a positive swab of a subsequent lesion with the record being 11 months later. A couple of the cases did have some 'background' symptoms they thought might be related to herpes but that isn't ascertained and some did not have any unusual symptoms at all apart from the lesions. Hence as you did not have lesions around your mouth or lips within days of the last sexual encounter as is exceptionally common for a primary oral HSV-1 infection, that pretty much rules out herpes orally as it is. The fact that you had no genital symptoms for a month also rules out genital herpes. I am not aware of anyone at all who has genuinely gone on to test positive by swab or blood in your specific circumstances. There are hundreds if not more than a thousand experiences on this website alone that are similar to yours that are truly negative for herpes I'm one of them!]  
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