I've had Herpes-like symptoms recurring in my genital area for over 1,5 years after an sexual encounter. So i have had 3 blood tests done during this time: first after 8 weeks from possible exposure, second after 11 months from possible exposure, and last of them was done last month, 1,5 years ater possible exposure. The type on the test performed to my understading was ELISA that didn't differentiate between HSV1 and HSV2. And that didn't really matter because the result was negative everytime, meaning - due to the general guidance, that i am HSV-negative altogether. Right?
But: the infectious disease specialist i saw, said that if the infection is local, the body doesn't produce antibodies to be detected in a blood test. That is somewhat confusing, because i thought that most of the herpes infections are "local" and not systemic? If my doctor is right, that would mean that all the general info about herpes blood tests and their accuracy in diagnosing herpes, oral or genital, was wrong or at least very misleading.
So, is it really so? Of course i asked my doctor this : Isn't herpes almost always local and not systemic, meaning it presents itself as a sore or a blister on lips or genitals? And why are antibody tests then used and recommended fo diagnosing that type of HSV-infections if the body isn't really likely to produce antibodies to be detected?
Answer was that the body produces antibodies to be detected in blood mostly if there is, for example, mouth full of blisters - but not if there is, for example, one blister on a lip?
This goes against pretty much everything i've read about diagnosing herpes via blood tests and the reliability of them in doing so.
I understand that false positives and false negatives do happen but do they really happen that way? And if they do, wouldn't that mean that most of the negative blood tests for HSV (when there is a reason to believe in a possibility of being infected) were actually false negatives, if it really is that Unusual for the antibodies to be produced in a way that could be detected in a blood test if the infection (like most of the HSV-infections?) is local?
Well your doctor is a little off. But let's figure out a few things. First if you have HSV symptoms you should be seen within 24-48hrs after they show to have a lesion culture done. This will quickly tell you if you have HSV or not. Though false negatives do happen with cultures but doing so early on in the symptoms helps reduce that risk. A PCR test would be easier.
HSV is localized to a set of nerves. But the infection does re-appear and the immune system attempts to fight it with the anitbodies and continues to make those antibodies even after symptoms have gone.
Given the amount of testing you have had I think it is safe to say you don't have herpes. The only change would be if you had a positive PCR test or culture with typing.
For the most part our HSV-1 testing isn't as sensetive as our HSV-2. But most people do have positive tests. But some times there isn't enough antibody in the system for our tests to see. It can and does happen. No test is 100%. But if you had one encounter then chances are low you even caught herpes.
HSV blood test not an accurate most of the time 80-98% accurate from the last CDC report.
This virus is a very tricky and still not a good test of that. No good research until now because as they said u can get a false positive and false negative so how come we can trust this blood test.
It's a game to make money from the fake blood test.
If you have symptoms so that mean u had the virus do not waste ur money for any test.
I disagree with you william. The test for HSV-2 is rather accurate. HSV-1 it is not as good for and that is just because the way of our immune system. Just because someone has symptoms doesn't mean they are caused by herpes. The Western Blot is one of our most accurate tests out there and while it does miss infections so do other tests out there for various other things. It has nothing to do with the virus being tricky. It's the antibody.
I have an appointment for a PCR swab next time i present symptoms. What ever it is that i have, it acts like herpes. When it started, there was mild burning when urinating, rash on my penis and leg pains. The rash occurs to the same area to this day, and is accompanied by mild nerve pains from penis to groins, thighs and joints (mostly on the side of the rash). Rash looks like red pimples and is somewhat "scaly" in appearence. It is not painful in itself, but sometimes little itchy.
So it's not classsical blister-type of thing, and if it really is herpes, i think it is more likely to be genital HSV1 (due to the behaviour that led to my symptoms). But isn't GHSV1 supposed to recur somewhat rarely? I have it like every month now, which is weird.
But the main question here was the information i got about herpes antibody-production and detecting it with a blood test. If it were true, it would be a general issue in diagnosing herpes with antibody blood tests.
So, even if the infection is local, in genitals for example, it would most likely launch the antibody-production to a level that could be seen in a blood test after certain amount of time has passed? Not always, but likely?
You are way over thinking this. The tests are good when it comes to Herpes. But nothing is 100%. The theroy that because you have one or two blisters means you won't test positive on a blood test isn't true.
Granted at this point you are having symptoms monthly. While not typical of herpes it does happen to some people. But there are other things this could be from a fungal infection to contact dermatitis.
Getting the PCR swab done is going to give you the best answers. Be seen when you have symptoms within 24-48hrs. This way you will know pretty quickly you have it or not and what type.
Okay, thanks. I don't see how i'm over-thinking this though, because isn't it understandable to be confused about getting information that conflicts with other information out there, from a person that is very specialized in infectious diseases? It wasn't my own theory, just something that i was told by an authority on the subject. So i needed some kind of clarification for that information being incorrect, and that i got. Thanks.
The nerve pain related to herpes from buttoaks down to legs and most of the time u can have nerve pain without any sores or blister but ur viurs is active on ur nerve. It won't kill u or even ur partner or even ur kids ..its a skin disease and u can get herpes by check hands with others too then u spread to ur anywhere in ur body the same like warts. Its not HIV to kill u but the problem u one would like to be sick even with a flu or cold. No one will live forever... its our life.
No i haven't seen a dermatologist with the rash on because it's difficult to have the right timing for an appointment. But now i got a "time-flexible" appointment to a dermatologist so i can negotiate about being seen with the rash.
The dermatologist i saw without the rash though said also that it's not herpes and that i can pretty much rely on my blood test results (there were two taken at the time). But he didn't say what else it could be. Of course i understand it's hard to say without seeing the rash.
Still, the nerve pains and the rash being recurrent - coming and going - doesn't bring anything else to mind than herpes.
all sorts of skin issues that can occur that will also cause tingling and such. you saying it looks scaly sounds more like a fungal infection or even eczema or something going on. hopefully your rash reoccurs on a weekday and you can be seen promptly for a better work up!
Talking of it reoccuring, i think it would be good to mention that there's not That clear line between the rash being on or off. Because i can see almost all the time very little to moderate traces of it on the area it usually appears - so that area looks at least little scaly all the time, and when the rash "recurs", the area becomes more noticeably scaly and the "scales" become red. I think that is somewhat non-herpes-like trait unless the area has been little scarred (due to herpes) so that i can see the change in it although it's not on?
Something like psoriasis has came to my mind too (that can cause joint sensations too) but i don't know how likely it would present itself only as a sexual reaction on genitals and not anywhere else.
We didn't really discuss about the nerve pain itself, but i think something like this was implied:
Since the herpes virus resides in a nerve cell, that would cause some nerve sensations - but it would still be a "local" infection due to it appearing only on one area in the skin.
I haven't really discussed about other local infections and their possible relations to nerve pains with any doctor.
It's hard to think about any purely dermatological penis issues that would be also accompanied by nerve sensations down the legs. But there are different autoimmune conditions for example that can cause something like that - reactive arthritis for example could be broadly defined as a condition of which symptoms can be "rash on penis, leg pains and urinary issues" (though eye involment usually occurs also) and i think it wouldn't be impossible to misdiagnose that as genital herpes. For me it has been pretty much ruled out with HLA-B27 gene test, CPR, SED and WBC though.
And, in the end, maybe some dermatological conditions could also cause such nerve sensations, because the nerve-endings in the genital area could be sensitive enough to somehow remotely reflect primarily dermatological sensations to other places too. Nerves are interconnected after all, aren't they?
I don't understand what you mean by "nerve test"? In case that was just a freudian slip and you in fact meant "nerve pain", then yes - i think that herpes isn't the only thing that can cause nerve sensations. But herpes is one of those conditions.
Well i think it is possible to keep multiple possibilities open at the same time? No reason to settle down to herpes speculation only. Of course herpes is one of the possibilities. But what can be done? If the blood tests are not accurate enough to rule out herpes, then a PCR swab should be taken from a suspected herpes lesion. And if it turns out to be negative, then it can be repeated - and at some point, if everything has continuously turned out to be negative for herpes, it must be accepted that it isn't likely to be herpes. And then, if not earlier, it would be reasonable to concentrate on other alternatives and consult different doctors from the fields of dermatology, urology and neurology - and, although i'm not a flag-bearer for psychosomatic explanations at all, some kind of psychological consultation could be beneficial for some people at least in trying to tolerate those symptoms without a known cause.
What has your own doctor said about your set of symptoms - does he think it is likely you have herpes? (I assume you have discussed this with your doctor since you've had blood tests done)
Well it's very infrequent really. When i had my first symptoms, the pain in both of my legs was there for some days. And nowadays i can feel only little "clues" of it every now and then, and when the rash is on.
I had the same pain too and other folks had the same with herpes causes. I think we have herpes but will never test positive in blood test.
I know its hard to say that but may be that's the truth and we will need to live with that.
william - the vast majority of people who use herpes igg blood testing at the proper time will get accurate results from it. not everything is herpes and the false negative issues aren't near as bad as you have continually posted that they are.
please limit your comments to supportive instead of trying to tell everyone that they have genital herpes and to not believe their blood tests. continue to post like you have been and I'll have to report you to the medhelp moderators for it.
Today i went to get a swab test done, since the rash is now as present as it can be. I believe the testing method that would be performed was HSV Antigen Detection. How reliable is that test (considering that the swab was taken from the rash at it's "peak") ?
Well the opening post is about my last consultation with a doctor who thought that my symptoms could be due to herpes although i've had 3 negative blood tests, the same doctor who gave me the misinformation (?) this thread is originally about (blood test being negative due to a "local" infection)
So i haven't seen any doctor after that. And it doesn't matter because i Know this rash could be herpes. But it could be something else too.
Yes, it is. Fortunately my symptoms are not that painful. Wouldn't mind if the symptoms vanished forever though, because they'll still annoying. I guess the worst part is the idea of having a contagious sexual disease, which is frustrating in two ways: Firstly, the regret of being in a situation to get that disease - the situation that theoretically could have been avoided (could have, would have, should have...) and secondly, the burden of possible transmission to someone else who at least theoretically would have taken the risk to even be in that kind of contact with me after hearing about my condition which i have a moral obligation to inform about due to my conscience.
And a life-long virus wouldn't do any good to a perfectionist psyche such as mine. Maybe it could offer some kind of lesson, but the cost still seems a little too high. I have my numerous eye floaters and urinary problems etc. to worry about also.
But herpes or not, it would be a good start to get the problem identified so the right measures, physically and mentally, could be taken. Wouldn't really like to scare people off in vain like this "i may have herpes, but all the tests have been negative"
There isn't much you to say you have herpes other than your symptoms. Your symptoms can be related to a lot of things as well. Your tests proves your negative. Yes there is a chance your test is wrong. But the chance of that is low in comparision.
Yes, but when it still remains uncertain and unidentifies, even if the chance is low - a moral dilemma arises. Should one inform (/scare) possible partners about herpes-like symptoms if all the tests have been negative for herpes? That's a tough question. But it's really not the main issue in my mind.
Well, i haven't had the results of my swab test yet so let's see how that turns out.
Well, i got the "results" already: the statement was that there weren't enough cells in the swab for the test to give a reliable result. I don't know if there can ever be enough cells because when the swab was taken, the rash was almost as worst as it can get. Getting the diagnosis just seems to get harder and harder.
I haven't had the invitation to the dermatologist yet, so i don't know when the appointment is. It may take at least month.
I don't think i'm going to have a fourth blood test done for HSV. It should have been positive by now, if it is ever going to be (assuming these symptoms were due to HSV)
Herpes Zoster is caused by Herpes Varicella-Zoster virus, which i have since, as most of the people, i have had chickenpox as a child. And i think that genital shingles isn't very common presentation of it. The clinical picture is usually different. It is also unlikely that sexual contact would somehow trigger it (since these symptoms started after sexual contact) and transmission i think isn't possible since i have the virus and the immunity to it of my own.
No, i haven't taken cipro but i'm on a roxithromycin now due to some borderline-positive blood tests for some bacteria that are not likely related to these issues. But that should also clear the other possible bacterial infections that could be causing these problems although nothing that would point to bacteria in my genital area (urinary tests, blood tests) have been found.
Herpes zoster can tigger by stress any time and can effect belw weist area and cause nerve pain too and rash. U checked ur hsv 1 and 2 and came back negative . It could be any other types of herpes or other onfection or a new viral infections.
Rather interesting. Did they do the culture for HSV or bacterial? I haven't heard of that on a HSV test. Did you get the swab done within 48hrs of the rash showing up? (I believe you did just want to confirm).
I think you need to start looking at something other than herpes. I would ingore William as doctors know what to look for in zoster.
You may want to look into another dermatologist. I am not sure where you are but I bet there is more than one in your area and hopefully your insurance will be taken. Please keep following up with us. I am really curious as how this ends out.
No need for me to look into another dermatologist since the doctor i consulted wasn't one. I've been referred to a dermatologist sometime soon.
The test that was taken (or was meant to be taken) was an immunofluorescent antigen test where they search for HSV-specific proteins byt detecting how the antibodies for those proteins react to the cells from the swab. And since they look for proteins, i think the amount of living viruses doesn't matter as long as there is a rash. And i had it at it's "peak" presentation. But as i mentioned, the statement i got was that there weren't enough cells in the swab for the test to give a reliable result.
I don't know if there will ever be enough cells in a swab from the rash when there weren't even know when my rash was at it's worst. I guess these methods are more useful if there is a blister from which the lot-of-cells containing fluid could be taken. But i, thankfully, don't have ever had blisters.
When i say i had the rash at it's peak presentation, i mean that it had been there under 48 hours but that's one more tricky thing: my symptoms start usually with a little milder rash or with a bump or two and then progress to a worse presentation. So the first, milder rash symptoms could have been there for a few days until it progressed to it's peak - I don't even know if that's typical for herpes but i think that if some test was performed on a rash at it's worst, it would be reliable? Well the reliability doesn't matter since the cell-deficiency of that sample made it unreliable in the first place.
Good info on the test. Chances are this isn't herpes then. Given you had it done under 48hrs that is really close to knowing its not herpes.
The "fluid" from blisters doesn't need to be there to do culture with typing. The best thing for you in your case would be to look into getting a PCR done on the rash when it comes back. The PCR looks for the RNA/DNA of the virus itself. It's far more accurate than the culture because it doesn't require the virus to be alive. It just has to be there.
It's hard to say that the cell-deficiency was the cause. Most culture tests are grown and that is why the virus has to be alive on the swab for it to happen. But I don't know much on this test so I can't argue for or against it. Just to me it sounds like it isn't Herpes at all going on at this point. I would be surprised if you got a positive test.
I'm sorry, i may not have been clear enough: I meant that the statement about not enough cells to give a reliable result WAS the result itself. So i think the test didn't even get performed due to the lack of cells.
I don't know why this test wasn't a PCR in the first place since i had a HPV PCR done also.
correct - they didn't have an adequate specimen sent to them to do the test.
I certainly wouldn't bother testing for zoster. shingles rarely reoccurs so no reason to think that shingles is the cause of your ongoing issues.
I wouldn't bother with any more herpes blood tests either at this point - lesion cultures only.
Hopefully you get the dermatology consult soon and get better answers. Unfortunately not too much more we can help you with at this point. It certainly would be terrific to hear an update from the derm appointment but unless you get a + lesion culture, nothing we can help you with.
Well the rash is almost gone but i still feel mild nerve sensations somewhere in my penis, urinary tract and the joint behind the knee.
It's weird how those sensations sometimes go all the way to the shin and occasionally i even feel mild tingling in my toe and heel. Everything happens mostly in the leg on the same side of my body where the rash is located on my penis but sometimes the sensations occur in the other leg also.
I've also had some urinary problems which, together with penile lesions and joint symptoms, led me to suspect reactive arthritis which has now been pretty much ruled out.
But now i've started to think about the possibility of these symptoms (genital rash and leg sensations) being genital psoriasis although i'm not of course qualified to make self-diagnoses. But i guess that self-diagnosis is better than no diagnosis? :/ The rash has an appearence that could be classified as psoriasis, due to it being more like a reddened area that consists of multiple bumps that are somewhat scaly. But i think they're not separate bumps per se. Although the appearence is somewhat scaly, the rash isn't flaky of dry - due to the moist environment? But the leg sensations are suspicious, since there hasn't been any swelling or restricted movement in my legs - just moderate to mild sensations. So i don't know if that would classify as psoriatic arthritis.
To some degree, mechanical irritation from masturbation seems to affect the rash flaring up. And again, that could be both: herpes or psoriasis.
I have the same but on my both legs and buttock and I have many blood test and came back negative...
but the problem too is : some ppl got negative on blood test for hsv1 and they had cold sore on lips before.. so thats mean we may be have it but with false negative... but can we got false negative more then 4 times over more than 1 year...
Talking of PCR tests, one thing came to my mind that's not directly related to herpes but to my case: if there weren't enough cells in the HSV-antigen test specimen, then is it likely that there was enough of them in the swab for my HPV-PCR test assuming that the amount of the cells was same?
Well, herpes hasn't been completely ruled out considering the possibility of having false negative blood tests. The symptoms seem to be like those of herpes - of course i very much would like it to be something else. But the previous question was about my HPV PCR-test, not herpes.
I am not very good with HPV. We have a HPV forum here. Don't worry about william. He likes asking those questions and they have no bearing on our discussion.
PCR looks for DNA/RNA as long as some of its there its going to find it. The amount of cells need not be the same. Its like the cutlure needs to be grown if the virus is dead due to heat or whatever during transport the culture will fail. PCR doesn't need the virus to be a live just needs it to be present.
The HPV without any symptoms and pain. It you have warts so your doctor and remove it or your boddy clear the virus by it self from 9 months to 2 years maxium. HPV not realted to any pain you said above so it could be related to any type of herpes... did you go to a different doctor?
Tonight again I have been pretty stressed about the uncertainty of my condition. So i acted as a bathroom scientist and did something that could be considered unwise by some measurements: i started scraping the area where the rash occurs with a piece of toilet paper to see if there is some kind of reaction - to predict the nature of that rash - if the condition is more of a local reaction than a latent virus. The previous rash had pretty much went away, and as i scraped the area, it became immediately noticeably rashy. Of course any area down there would become red when irritated too much, but i'm talking about THE rash recurring. It wasn't as bad as it has been, but i could still see all it's familiar traits and spots. I also noticed nerve sensations running down my leg as i irritated the area - due to the nerve endings.
So, would herpes react that fast? I think this seems more like a local reaction than a latent virus waking up in a minute.
I was talking about HPV only in two latest posts considering PCR test. I just asked if there would be enough cells for That test to be performed if there wasn't enough of them for my HSV antigen test.
As i said, the irritation from rubbing was't normal irritation, but the rash i've been talking about and suspecting to be herpes in this thread started to occur right after it - suggesting that it would be a local reaction like psoriasis or something like that instead of herpes (unless herpes can re-activate to the skin in 1 minute). I think that is an important clue also in deciding if it's herpes or not, that's why i mentioned it here.
Of course everything gets irritated when rubbed - but again: the very traits that have made this "herpes" rash abnormal - the scaly bumps, deep-red spots etc. appeared after the rubbing. So it wasn't just redness or irritation but THE rash appearing. And only on that particular spot. The irritation from rubbing was different (just plainly irritated) in areas where the rash doesn't recur. I could take a picture of it and paste it here if it was allowed and if i would consider it so important.
Yes, they tested the same area for hpv too, and yes, separate swab.
I've already told you several times now that this isn't likely to be herpes related at all.
I'm going to have to limit your posts at this point. If you get a + herpes lesion culture then by all means post and if you want to post a general update to your situation after the visit to the dermatologist that too would be terrific but continuing to post "if I did this" or "if this is happening does this mean it's herpes" type posts will be reported to the moderators. really nothing more we can help you with your multiple negative tests and we have to limit posting at some point.
Be my guest - but it's not me who has kept this thread so active. I've just answered politely to the questions that have been asked from me. And i just figured that it would be best to give the most accurate description of the situation. I haven't really asked that kind of questions like you say: "if this is happening does this mean this is herpes" - you just mix me up with william28 whose questions I've been answering. And i clearly made it known that i acknowledge that pictures aren't allowed here. The picture comment was just meant to illustrate that i'm confident about THE rash recurring immediately after irritation.
You just happened to have a pre-attitude to my posts for whatever reason and you answer based on that - instead of really considering what i say.
So what have i mainly done:
1. Presented my situation and the original question that i haven't ever seen asked before
2. Updated my situation (the tests that we're taken)
3. Asked some additional questions about the tests etc. (which to my understanding is the function of this board)
An then: 4. Answered questions that have been asked from me. Sometimes i wouldn't even have been so keen on answering williams' questions but i think it would be unpolite not to answer.
had some research What Affects the blood work test:
Reasons you may not be able to have the test or why the results may not be helpful include:
* Taking medicines, such as hydralazine, phenylbutazone, birth control pills, anticonvulsants (such as phenytoin), methotrexate, aminophenazone, asparaginase, or corticosteroids.
* Having cancer treatments, both radiation and chemotherapy.
* Receiving a blood transfusion in the past 6 months.
* Getting vaccinations (immunizations), especially vaccinations with repeat (booster) doses, in the past 6 months.
* Using alcohol or illegal drugs.
* Having a radioactive scan in the past 3 days.
I'm not sure if i'm allowed to answer that, but no, i don't have any update. But i let you know if anything changes in my situation, so no need to keep asking it. I don't know how long it is going to take for anything to change though. Whether it took a month or a year, i try to remember to tell about it here as it happens. Take care.
Firstly, thank you Lemten for posting this as I have been searching for something like it for about 2 weeks now. I too got a negative HSV test about a week ago and think that it may be positive. Not sure why GracefromHHP is saying what she is (although at some points her view has been helpful for me understanding more). I was sexually active about 8 weeks ago ONCE with someone and about 2 weeks ago acquired a rash below the base of the tip of my penis, this is what sparked me to get a blood test. It gets crusty at some points but I too think this is half from masturbation.
I know this thread is a year old now, but any info on what ended up happening with this would be much appreciated.
The original thread is over 1 year old, and I happened to come back to it now. So now is the first time I see your 4 months old reply to the thread. For some reason my old account isn't valid anymore, so I had to sign in to the site again to be able to answer.
I'm sorry to say that nothing particular has happened concerning my situation or the process of getting diagnosed. The only difference is that now the stinging and burning sensations in the sacral area all down my leg and even up my arm on that side are constant and have been going on for little over a year. The skin symptoms are just as vague as before. Some little red spots on the penis every now and then. I've had every other test done also, and everything has come up negative. Unfortunately the most reasonable cause for my symptoms would be herpes I think, even when my blood tests have been negative. And if this indeed is herpes, then there is an undeniable possibility of herpetic neuralgia developing from HSV and not just from Zoster. At least if the burning in the lower back, hip, groin, leg and toes as well as strong fasciculations in the calfs are considered to be neuralgia - which they are to all my understanding.
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