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I lived in limbo hell for a year, and I wanted to post my experience here so others could benefit from it. The whole time I had experts telling me I was obsessing, nothing I described sounded like herpes, etc. 11 months later, boom, an outbreak that is cultured positive.

I'm sorry if this is very candid, but the site is a safe haven. Here's my story:

On Oct 31 I had vaginal only sex with a female, I'm a male.

Nov 10 - Start getting a feeling in my genitals like I had gotten icy hot on them, this continues for a week, along with an intense itch in my pubic hair.

Nov 11 - Partner mentions she has herpes

Nov 18 - Entire genitals flush red and 2 sets of 3 clustered dark red bumps with a black center appear.

Nov 19- One more set of 3 clustered bumps appear.

Also have:

- Diarrhea

- Feeling of fullness in my stomach

- Intensely sore lower back

- Sore lymph nodes in my groin, although not swollen enough to physically feel

- Sore inner thigh muscles

- Terrible general genital pain

- Dull right testicle pain

- Warm urination, won't say burning, but something doesn't feel right

- Bright red meatus

- Clammy, sticky feeling in the genitals

Around Nov 26 the bumps just disappear on their own, but leave a profuse redness on my genitals. My skin still feels so sore that touching my clothes is aggravating. Under the rim of my penis feels like someone is taking sandpaper and just rubbing away, it's very raw.

I was too dumb to go in to the doctor. I figured I would let the blood tests sort it out. That was a HUGE mistake.

Religiously, about every 3 weeks, I go in for an IgG blood test. Always negative. I had other STD tests done as well, in addition to a biopsy at a dermatologist. I just wanted to know what was going on because I still had low level irritation that was driving me nuts, and my genitals were red. Often I'd get the icy hot feeling, I started to find I could take antihistamines and it would calm down. Often my penis blood vessels would appear swollen and I'd almost get a small bruise on my foreskin. I think the virus was irritating my skin enough at a low level to cause a histamine reaction without ever coming to the surface.

At 4 months I had a Western Blot done through Westover Heights clinic. It came back fully negative and I was told to seek counseling if I couldn't let it go.

But the bizarre symptoms continued. At times toes on my right foot would go numb, other times my right calf would feel like it was sunburned, but I hadn't been in the sun. Patiently I analyzed whether I was being a hypochondriac or if the symptoms were genuine, and I'd put them in to a search engine. For seemingly unrelated symptoms, I'd keep popping up to a common theme. I'd fall on to the IC forum, the lyme forum, the fibromyalgia forum. Everytime I'd find my symptom I'd see someone say, "I started feeling that when I had herpes, do you happen to have herpes?" All too often the answer would be, "yes, but I never thought to put the two together".

At 6 months I awoke one day to a rugburn spot the size of a dime. It didn't hurt, but it wasn't normal. I called the doc, but there was no opening, by the next day it was fading.

I finally decided that, rather than stressing about it, I just had to let whatever it was run its course and I'd figure it out sooner or later. This helped my well-being tremendously and I started getting on with my life. I still had the low-level symptoms, but I blocked them out and just accepted them.

At 11 months I went to bed one night with what looked like very red angry chicken skin, 2 tiny bumps, they stung slightly, but not bad. I woke up in the morning and one looked like a tiny blister. I called the doc right away knowing I had to get out of limbo hell. I'd rather not be HSV-positive, but it's even worse to be HSV-positive and not know if you are.

The doc took one look and knew what it was. He ordered my 13th IgG test and a culture. The culture came back HSV-1 positive, the blood test again came back negative. I had at least 8 bumps, some that blistered, none that ruptured with this recurrence, I'm told that's rare as well to have more than one lesion with a recurrence.

This outbreak had very localized pain and was very self-limiting, just like people who have had it for awhile say. The first one was in no way like that. I think the people who have had it for a long time mean well when they give advice, but I think they may have blocked it from their mind how awful the first outbreak was and the multitude of symptoms that go with it. Herpes is a virus that lives in your nerves. It's realistic to imagine it causes inflammation and trauma in your nerves until your body can really get a handle on it.

Apparently my case is "rare", I'm not so sure. Among the things that are so rare:

- Caught HSV-1 from genital only sex

- Caught HSV-1 from one time genital only sex

- IgG blood tests continue to be negative

- Western Blot was negative

- More than one lesion on recurrence

I saw index values on 3 IgG tests, it was always around 0.4 for HSV-1 and <0.20 for HSV-2. Terri Warren made the statement that, before 3 months were past, usually anyone truly negative is below 0.20. Dr. HHH says nothing below 1.0 matters, negative is negative. I don't agree.

If only one strain is suspected, and you have worrisome symptoms, look at the index value and see if it's above 0.20. If you already have the other strain you can't do that as there is some cross-reaction and the index value will be truly meaningless.

A blood test at 4 months is not "definitive". Even the Focus literature states a blood test result must be used as a tool by your physician in conjunction with symptoms and clinical history. If you have worrisome symptoms and you've done your due diligence and found nothing else, you have reason to keep that door open.

I hope that my story will help people from having to go through the hell I went through. If you have worrisome symptoms, get in to the doc as quick as you can. Don't spend thousands of dollars on testing later to confirm it, because you might not be able to.

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  • 4 months later...

I'm currently exactly where you were, Bob. . . All 5 of my tests have been in the negative range. I haven't had any significant genital bumps or rashes like you describe (other than the 2 or 3 bumps I originally saw at the opening of my rectum), but I've had plenty of other weird tingling and tiny sore bumps on my scalp that no one can explain. I never had any of this crap before the sexual encounter, and now I miraculously do. . .

One of my doctors who has done the testing has told me "negative is negative" over and over. . . Here's the deal with my test scores, though:

HSV1: always under 0.10

HSV2:

First Test 0.51

Second Test 0.59

Third Test 0.40

Fourth Test 0.61

Fifth Test 0.69

I'm not a math wiz, but those numbers are definitely trending upward. I spoke with Terri Warren on the phone, and she said the numbers were suspiciously high. With what you said about a true negative being under 0.20 after 3 months, my situation isn't looking very good.

I wanted to test again last week, but my doctor refused. I have scheduled a Western Blot test for the end of the month with a specialist in viral medicine. I don't want the test to be positive, but I guess part of me does. Like you, I just want to KNOW. If I truly have herpes, I'll start taking the antivirals again to decrease the chances of passing it on to my wife and try to move on. I'm just so sick of feeling this crawling, tingling sensation over my testicles and not having an explanation. . . I don't know if I could do 13 tests like you, though. . . My wife gets upset whenever I refuse to accept the test results because she's sick of thinking that I could have herpes. Even my therapist is starting to look at me with skepticism.

I'm tired of being a prisoner to doubt. . . Am I really a rare case who will take almost a year to create detectable antibodies? Maybe I should go buy another lottery ticket. . .

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  • 2 weeks later...

Sucks that you are going through this SCross. Those numbers are suspiciously high. My "negative" HSV1 numbers as I stated never got above .49, yet I'm still positive.

My truly negative HSV2 numbers never got above .18. With people who already have HSV1, those HSV2 numbers can be off due to cross-reaction, but you don't appear to have HSV1.

I don't think the negative numbers while having herpes is as rare as it's made out to be. From lots of studying whitepapers and my own experience, I believe the HSV1 test is at best 80% accurate. HSV2 is more accurate, but even that is probably more around 90% accurate.

Keep in mind I also had a negative Western Blot.

The HerpeSelect accuracy numbers were derived by testing blood positive to Western Blot and seeing how many also showed positive on HerpeSelect. In my case where I'm negative on both, that creates a false number of accuracy. If Western Blot does not catch all cases it shouldn't be used to derive definitive HerpeSelect accuracy. More interesting would be a comparison to cases confirmed by culture.

Keep us informed and keep your head up. I only check this maybe once a month anymore. Sadly it's been a relief to finally confirm what I was suspecting. I'd rather not have it, but at least I don't spend 100% of my time attempting to diagnose myself anymore.

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Well, my test results were negative yesterday: 0.56. Bob12, it's stories like yours that make me have my doubts. That said, Terri Warren did say that some people just have high negatives and are not infected with HSV. I'm waiting to receive a response from her about my case on MedHelp, and I mentioned your situation. FWIW, all of my other symptoms have been vague. Aside from the weird testicular tingling, I haven't had anything that screams herpes like your redness and that stuff. I'm inclined to think that I don't have it at this point. I know people test falsely negative, but all the experts say it is fairly rare.

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The saga continues :(. . . Terri Warren suggested that I go ahead and take the western blot just to be sure, since my negative results are high. This doctor I'm seeing next week better agree to do the testing or I will have to chain myself to the examination table until he does... I feel like Odysseus.

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Sadly it's been a relief to finally confirm what I was suspecting. I'd rather not have it, but at least I don't spend 100% of my time attempting to diagnose myself anymore.

I totally sympathize with this. I just got a western blot test done at about 5 months, and it was negative, and I actually felt disappointed. I don't want it either. But there is this part of me that just wants someone to know what's going on with me nad be able to give me and answer and tell me how to move forward. I feel disgusted by it all. I have seen about 7 doctors, tried every anti-fungal, anti-biotic, even though I tested negative for swabs on those, and no relief.

So far I have tested many times with HerpeSelect and just now WB for the first time. All came back negative. I did take Acyclovir for about 10 days at the 2 week mark, and another antiviral for less than 10 days at about 6 weeks, but my WB was 14 weeks off of the meds, which Terri Warren and her crew thought was plenty of time. They are saying its conclusive, but I'm reading threads like this and losing hope.

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Hey Bob,

Did you ever take anti-virals early in your saga? Also, do you take them now and find that they've helped or not?

Most importantly, someone on the thread mentioned that you had done PCR swabbing? Can you tell me anything about that? I have heard about it and when I ask my doctor's about it they roll their eyes and say to let it go, you don't want to bother with that, but then won't tell me any more.

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I had an unsuccessful visit with a new doctor today... I guess it was unsuccessful in the sense that he wasn't able to order a western blot. He flipped through some huge catalogues (one from Quest) and said that he wasn't sure how to order one for herpes.

I told him my whole story, and he didn't think antivirals would delay seroconversion at all- much less up to 10 months after possibly being infected. I just don't know what to think- this is a very well-respected doctor in New York City who sees scores of people for HIV/AIDS treatment. . . Surely, this guy has seen it all, right? I can't believe, for once in my life, that I could be an exception to the rule for anything...

FWIW, I also asked Terri Warren about the implications of having a high negative test score, and this is what she wrote:

"Most people who test with a high negative really are negative. There are a few who are positive. Maybe 5%. Most of the time, they are high negatives because they are really negative, but sometimes, they are high negatives as they are passing through that range on their way to a positive. I don't think that fits your situation, though."

I also asked Terri about the likelihood of simultaneously blood-testing negative and swab-testing positive. This is what she wrote:

"We, at our clinic, have had 9 people in 31 years that have tested swab test positive and antibody negative or equivocal, via western blot."

I guess it's important to note that the western blot is probably much more thorough than the HerpeSelect, but it sounds like Bob12's situation is exceedingly rare?

I don't know- I'm just at even more of a loss. I'm kind of on the verge of giving up with the testing. I just don't feel like there's really anything else I can do.

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Sorry man. I know how disappointing that is. I too went to a place in West Hollywood, that is very reputable for dealing with HIV and has a mostly gay clientel. Not that it matters, I'm just saying it is a reputable STD clinic in an area that is known for being an adult playground in the gay community. The doctor that I saw was super confident that I had guilty penis syndrome. Which you'd think would make me feel relieved and my symptoms would go away. I was so happy when I left, I took the anti-fungal meds that he prescribed and thought, "In two weeks this whole thing will be over!!!" Well, in hindsight, he was an arrogant prick who was totally off, and really didn't know that much, or was lying to help me relax when I pressed him about false negatives, etc.

Sorry, man, the saga continues. I am staring at the computer saying, I need to keep pushing forward and see someone else. But I don't know where to begin that isn't just going bakc down the same spiral and feeling like I know exactly how it will all plaly out when I walk in without blisters and say, I think I might have herpes.

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Scross

I think you need to take careful note of what Terri is saying when she says that so few people swab positive with negative bloods. The operative word being 'swab' not 'negative'. If a person does not make what are considered the appropriate antibodies for HSV then I suspect they are at the mercy of the virus and would experience skin lesions eventually (and to be honest, fairly promptly in the case of HSV-2 and absent HSV-1 antibodies which is your case!)

It is very rare that a Western blot for HSV-2 turns a negative from a more standard test such as Herpeselect into a positive. This is because the protein on the testing plates for commercially available tests is very sensitive and essentially selected/designed (part by accident and intention) to report more false positives than negatives.

I for one cannot underplay 'guilty penis syndrome'. It is as real as any other condition of the mind/body relationship. Try to remember back a few years and how much of your day was spent actually thinking solely about your penis and scrotum and what it felt like (as opposed to what you'd like to be or were doing with it guys!!). That answer was close to zero, wasn't it. Yet it itched and got hot, pinched, changed colour, veins did weird things all without you really noticing. Compare that to your mindset at the moment, you dedicate a lot of time to it. Most of us did in your position waiting for the day when it is clear to us that we are either infected or not.

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I had an unsuccessful visit with a new doctor today... I guess it was unsuccessful in the sense that he wasn't able to order a western blot. He flipped through some huge catalogues (one from Quest) and said that he wasn't sure how to order one for herpes.

I told him my whole story, and he didn't think antivirals would delay seroconversion at all- much less up to 10 months after possibly being infected. I just don't know what to think- this is a very well-respected doctor in New York City who sees scores of people for HIV/AIDS treatment. . . Surely, this guy has seen it all, right? I can't believe, for once in my life, that I could be an exception to the rule for anything...

FWIW, I also asked Terri Warren about the implications of having a high negative test score, and this is what she wrote:

"Most people who test with a high negative really are negative. There are a few who are positive. Maybe 5%. Most of the time, they are high negatives because they are really negative, but sometimes, they are high negatives as they are passing through that range on their way to a positive. I don't think that fits your situation, though."

I also asked Terri about the likelihood of simultaneously blood-testing negative and swab-testing positive. This is what she wrote:

"We, at our clinic, have had 9 people in 31 years that have tested swab test positive and antibody negative or equivocal, via western blot."

I guess it's important to note that the western blot is probably much more thorough than the HerpeSelect, but it sounds like Bob12's situation is exceedingly rare?

I don't know- I'm just at even more of a loss. I'm kind of on the verge of giving up with the testing. I just don't feel like there's really anything else I can do.

Terri Warren or anyone at Westover Heights Clinic can give you the correct ordering information for the Western Blot. In fact, you can have it done through them as their "phone patient."

So if your doc can't figure it out, I suggest you contact Westover Heights.

Or heck, you could just tell your doc the proper codes for the various HSV tests through Quest:

QUEST DIAGNOSTICS

HerpeSelect HSV-2 ELISA: 3640x

HerpeSelect HSV-1 ELISA: 3636x

HSV-1 and HSV-2 together: 6447x

Western Blot: 34534

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Thanks, RealisticGal :)

I actually called the clinic yesterday, and they're mailing me a test kit. I plan to take that back to my doctor, once it arrives. It's impossible getting the doctors in New York to sit and listen for 5 minutes, let alone go to any trouble of ordering a test like this- as crazy as that sounds...

In any case, I guess this is the last step for me. There's simply nothing else I can do after this test. If it comes back negative, and I just happen to be one of those rare people who will never test positive, then I've done everything I can possibly do...

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  • 1 month later...

In my opinion it's not rare to test negative and have it. I have continuously and I've met several others who have now. HSV1 for HerpeSelect shows 80% accuracy at 6 months after a positive swab, what does that tell you? The 100% shown is crap, WB was negative for me too. Accuracy of HSV2 when HSV1 is present doesn't look so great either.

The mystical "3 months" they tell you for testing, HSV1 shows only 73% caught at that time. Those are terrible accuracy numbers.

I'm not at the mercy of the virus, my first real outbreak took a year to happen and it was nothing compared to what people usually see. The doc even thought it might not be herpes since it was so small.

My thought is that antibodies for other herpes family viruses have it under control, namely Epstein-Barr and VZV.

Original.00007435-200304000-00007.TT1.jpeg

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Dear Bob12,

Your story has helped me a lot. I have a realistic sense that I have HSV. Two years later I have what is obviously chronic herpetic neuralgia but negative results. I'm going to take the Western Blot in a few days but since there has been a long passage of time, I hope it registers accurate results unlike it did for you. It was disturbing to see that the gold standard test gave you false negative results. I have read anecdotal stories of people with chronic herpetic neuralgia having difficulty in getting positive results (not that any of them wanted to be positive but were realists based on their symptoms). I wonder if underlying non-related to HSV health conditions make diagnoses difficult and symptoms atypical. There is now a little research, I have seen, indicating that the taking of Valtrex at the primary outbreak may lead to difficulty getting accurate seroconversion results. But, seeing your post makes me hope that the Western Blot is correct for me. I will still attempt to get a swab but I get cracks and ulcers that come and go in less than two days. I'm running out of Valtrex and I won't get a prescription renewal without confirmation. Taking 2000 mgs of Valtrex with an anti-itch medication is the only way I am able to make it through the late afternoons and nights. Have you tried to lower the acid in your blood?

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I'm sorry you're going through this Rosey, I know how you feel.

In all honesty I have a sneaking feeling that strength of index numbers and "seroconversion" are directly related to how bad your outbreaks are. I've never had a bad outbreak and my index numbers have never been above 0.48 for HSV1.

You're right on the Valtrex and delayed seroconversion. Most I saw took Valtrex at the first outbreak, but did not take Valtrex continuously and seroconverted on their second outbreak. That also supports my theory. First outbreak wasn't bad and over quick, no antibodies.

The herpes family of viruses has many different viruses and studies have shown there are cross-reactivity between them. It's not at all implausible to think that if you get HSV (1 especially) early in life before you have chicken pox (VZV) and catch mono (Epstein-Barr) that your body produces HSV antibodies at a strong level.

However, catch it later in life after you've been exposed to those other herpes viruses and the possibility that your immune system decides to also use antibodies that share some common surface proteins rather than only HSV antibodies is a good theory.

I can think of no other explanation for why I have HSV, my outbreaks have been tiny and very infrequent, yet I have no antibodies (at a positive level) by any test.

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Thank you for response

Actually I would have stopped pursuing answers if I did not have chronic daily symptoms that are uncomfortable and maddening but are not like a classic outbreak. I caught HSV1. I may have a preexisting case of EB which I will have checked and may have influenced the non-classic symptoms of HSV. I for sure never had HSV before two years ago. Considering that I know how I was infected, what I am experiencing is not a different condition that just decided to emerge at the same time I was exposed. And, I know my body. I could live with it if it were just ocassional classical outbreaks. Even the top experts don't all have the same information especially when it comes to atypical outbreaks and HSV and ongoing herpetic neuralgia. I will never pass on this illness to anyone. Right now, I am trying to do what it takes so I can get appropriate help. Your post, albeit, evoking deep compassion from me, assured me that I am on the right path in seeking confirmation.

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In my opinion it's not rare to test negative and have it. I have continuously and I've met several others who have now. HSV1 for HerpeSelect shows 80% accuracy at 6 months after a positive swab, what does that tell you? The 100% shown is crap, WB was negative for me too. Accuracy of HSV2 when HSV1 is present doesn't look so great either.

The mystical "3 months" they tell you for testing, HSV1 shows only 73% caught at that time. Those are terrible accuracy numbers.

I'm not at the mercy of the virus, my first real outbreak took a year to happen and it was nothing compared to what people usually see. The doc even thought it might not be herpes since it was so small.

My thought is that antibodies for other herpes family viruses have it under control, namely Epstein-Barr and VZV.

Original.00007435-200304000-00007.TT1.jpeg

It's good to hear from you, Bob 12. We've actually been discussing your case in various other threads where people (like myself) continue to test negative and have consistent symptoms that suggest infection... I assume you didn't have sex with anyone from the time you think you initially became infected to the time you swab tested positive? I think I already know the answer to that question, but it certainly is an important variable in the matter of testing...

FWIW, I did ask Terri Warren about the chances of swab testing positive while simultaneously blood testing negative (after the standard window period) and she said they have seen 9 people do that in 31 years at her clinic. I believe that is for the Western Blot test, though. In other words, it sounds like your case is quite rare (as far as her experience goes because I assume she has literally seen thousands of patients).

That having been said, I'm still with you... I don't trust the test results I have had, either. To be fair to the testing technology, I think the antivirals I was on are the reason my tests have been unreliable, though.

I'm still going to get the Western Blot this week and hope for the best- or worst, depending on how you want to look at it ;)

One last question: Did your outbreaks/symptoms get any better after starting antivirals at 11.5 months?

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Dear Bob12,

Your story has helped me a lot. I have a realistic sense that I have HSV. Two years later I have what is obviously chronic herpetic neuralgia but negative results. I'm going to take the Western Blot in a few days but since there has been a long passage of time, I hope it registers accurate results unlike it did for you. It was disturbing to see that the gold standard test gave you false negative results. I have read anecdotal stories of people with chronic herpetic neuralgia having difficulty in getting positive results (not that any of them wanted to be positive but were realists based on their symptoms). I wonder if underlying non-related to HSV health conditions make diagnoses difficult and symptoms atypical. There is now a little research, I have seen, indicating that the taking of Valtrex at the primary outbreak may lead to difficulty getting accurate seroconversion results. But, seeing your post makes me hope that the Western Blot is correct for me. I will still attempt to get a swab but I get cracks and ulcers that come and go in less than two days. I'm running out of Valtrex and I won't get a prescription renewal without confirmation. Taking 2000 mgs of Valtrex with an anti-itch medication is the only way I am able to make it through the late afternoons and nights. Have you tried to lower the acid in your blood?

I'm in EXACTLY the same boat you are in, Rosey... I've had negative tests at 8-9 months out, but I still have this persistent tingling and some other weird stuff going on (no obvious , painful outbreaks or anything like that). The only thing I can attribute the tingling to would be neuralgia, since the tingling has been daily for the past 5 or 6 months with no outbreaks.

I was also one of those people who took Valtrex/acyclovir a few days after suspicion of infection. . . I agree with Bob12's hypothesis on the antivirals. There are some studies that have been done that support it, but I don't think they are conclusive enough to officially qualify this theory as a law.

All we can do is be honest and post our personal experiences for others to read- maybe someone with the intelligence and resources will eventually decide that something needs to be done to clear up all of this nerve-wracking doubt...

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I consulted with Terri Warren, so I guess I should be included in that 9. :) I was also negative on the good ol' Western Blot. When I talked to her about the positive culture when she gave me the all clear I think she was officially sad. She is a great person and just wants to help people.

Correct, no sex from the first symptoms until the culture.

Antivirals made the outbreak better for a few hours. For me, they took effect quick and wore off quick. I think they weakened my natural defenses though because a month after taking antivirals I got another atypical outbreak. I quit taking them and haven't seen anything since. I get sensitive skin that I'm fairly certain is an outbreak, but I see nothing but redness.

Rosey, I hear you on the neuralgia. I have maddening low level irritation about every single day. The only time it's gone away is during the tiny outbreaks I had and when my skin is very sensitive. It's also worse at night, I hate it, but I've learned to live with it. Antivirals did nothing for that unfortunately.

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Thanks everyone for your contributions. I'm in a very similar situation. 6.5 months of negative blood tests, but I've had non stop symptoms for the whole times. Not typical outbreaks, for me its like a white ulcer or crack in the skin.

I'm beginning to wonder if the reason doctors tell you to just forget it and move on is that they know that if you don't, its not unlikely you'll spend years agonizing and pursuing something that they know you'll never get an answer for. If only 10% actually expdrience symptoms, then statistically chances are even if you spread it, it won't affect the other person (in theory) so they just say, "don't thinka bout it and just go back to your normal life. They totally disregard the fact that when people have something wrong with them, they tend to want to know what it is and seak relief. You wouldn't tell someone with a broken arm to try not to think about it, but for some reason when it comes to herpes, they don't have an answer for what you could do anyway since there is no cure, so they just say, "oh well, try not to think about it. No sense in worrying." Which sadly, is kind of true.

Its so hard to move on with your life and expose something to other people when you have been suffereing so much from it. I think its a bit of a cop out on the part of doctors, but then again, they truly have no answers so I don't now what I expect them to say anyway.

I think we've all spoken to Terri W. She is the patron saint of Herpes to some people. I think everyone assumes she is an expert, who has some answers they can't find anywhere else. I think she's a woman who sells books. She contradicts herself all the time, as do all those doctors on MedHelp, one will say one thing conclusively, and then another will give you a totally different answer. They can't even coordinate. But I guess that's because none of them really know anything.

I consulted with Terri Warren, so I guess I should be included in that 9. :) I was also negative on the good ol' Western Blot. When I talked to her about the positive culture when she gave me the all clear I think she was officially sad. She is a great person and just wants to help people.

Correct, no sex from the first symptoms until the culture.

Antivirals made the outbreak better for a few hours. For me, they took effect quick and wore off quick. I think they weakened my natural defenses though because a month after taking antivirals I got another atypical outbreak. I quit taking them and haven't seen anything since. I get sensitive skin that I'm fairly certain is an outbreak, but I see nothing but redness.

Rosey, I hear you on the neuralgia. I have maddening low level irritation about every single day. The only time it's gone away is during the tiny outbreaks I had and when my skin is very sensitive. It's also worse at night, I hate it, but I've learned to live with it. Antivirals did nothing for that unfortunately.

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I think the average medical practitioner is used to the classic presentation of herpes. If it doesn't present classically then they assume it's not that, that was my experience.

My doctor also told me something interesting, which I knew. He said 2/3 of the US population shows positive for HSV1. Showing positive gives you no idea where you have it. His take was that at the end of the day it doesn't do anyone any good to take the blood test. In reality I think he's right, get in for a visual on anything and that's about the best you can do.

When you get sick of showing someone your privates continuously just move on knowing you've made a good effort to figure it out and just be watchful. If > 2/3 of the population is HSV1+ already, the odds against retransmitting are in your favor. Unfortunately as we all know, it's no guarantee.

HSV2 I think is a different story. Seropositivity is more like 30% in the US population and most haven't been exposed to it. It also seems to be a lot more active.

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Yes Bob12, you must be one of the 9 because early last year, the number was 8. If I did not have neuralgia, I would have believed my test results. HSV is not fully understood. No one expert has all the same information. Your post helped me accept my situation. It ended doubt for me. What the experts are not yet willing to hear is that it can cause more systemic issues such as neuralgia. I had one expert take a look at a vesicle and insist that it was a pimple. Later that same day it grew and became misshaped and popped over night. It did not crust over. I wish I had insisted on a swab but I did want to argue with the expert. Your post made me realize that I need to be more pushy about getting swabs taken.

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    • Lucy29
      @CHT I am not sure what country you are in but I am in the U.K. and they don’t do blood tests for HSV at the standard sexual health clinics maybe at private ones where you have pay they do.   What would checking my anti bodies confirm ? And she didn’t swab the area as she said there was nothing to swab and no lesions but I am sure there was. She seemed quite inexperienced.  I have had an lesion swabbed years  ago  to confirm HSV2 but no swabs  since.  I would like  to know if they are HSV or my excema as I never know which is which so I just don’t have sex when I get these feelings as I don’t know if I’m having a Outbreak.  I will have a look at the link thanks. I wouldn’t want to go on the implant again as I don’t want 3 years of birth  control in my arm. I may consider the mini pill which is the same hormone as the implant as I can easily stop this it I have a bad reaction. I have an appointment with a specialist at the sexual health clinic next week 
    • WilsoInAus
      Hey @PlainJane what a thoroughly nasty piece of work! Im afraid it is the waiting game for you, having said that, there seems very little reason for you to suspect herpes.
    • PlainJane
      @WilsoInAus Thank you so much for the reply! You did before I even asked lol. I really didn’t want to talk to her about it. The last time we had spoken she was really mean and nasty to me. Threatening to beat me up because she was drunk. I don’t want her going around telling people I asked her if she has herpes because I have it. Which she absolutely will. Or she does and then I will be her scape goat for her to tell people I’m the one who gave it to her. I guess it’ll be a waiting game to get blood work to confirm or deny the presence of HSV2 antibodies. 
    • WilsoInAus
      Hello @PlainJane I think I recall your partner's post and would suggest that what he had as revealed in the photos was almost certainly not herpes - and reaffirmed above! The first thing to note is that you cannot be infected with HSV-1 and then test at a level 43.5 a total of 9 days after the incident. That's not how your body works. It would takes several weeks and possibly months to reach that level. Undoubtedly the HSV-1 infection is old and highly likely an oral infection from your childhood. The next thing to note is that toys or any object are not a great way of transferring herpes. Typically the rubbing of the skin area that is shedding the virus against the recipient's skin is needed. Transfer any other way is somewhere between infeasible to impossible. Your pictures do not look like herpes to me in favour of folliculitis - your partner's thigh shots are almost certainly folliculitis. Also note that this female friend must have HSV-2 for this to even warrant the vaguest notion of herpes being a cause. Can you ask her? If she does have HSV-2, then you will need a 12-16 week IgG test in order to have a conclusive answer (with a strong expectation of negative).
    • PlainJane
      @WilsoInAus Could you review this? You replied previously on my boyfriends post of his butt rash. I guess all I can really do is find a facility who will swab when I have a suspecting bump, since my doctor won’t for some reason and then redo the blood test for HSV2 since it’s now been 4 weeks since possible exposure. 
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