False negative IGGs

[DiDiva]

This is not a question as such, but I am posting this as a separate discussion, so not to have this running through people's threads.  I would be interested to hear people's views on this - especially if you have experienced a false negative blood test.  I am not challenging the tests or views of volunteers.  I am simply interested in this, as it seems quite a few people recently have had issues with this, as well as posters who are trying to get a diagnosis of herpes but keep getting negative bloods (like myself!).

I am absolutely NOT here to incite fear into posters by saying their negative blood tests could be false.  No way at all.  I think posters here already have enough fear, lol.  But I am getting the impression that although this is a public community forum, people are not allowed to post their own opinions, or more accurately, opinions that may differ from the 'normal' advice from regular volunteers.  First I want to get across how great I think the volunteers are and have given loads of fab advice to everyone using this. I have learn LOADS here, much more than from my docs. I am not stating that using the IGG is pointless, no way, but we all know of the false negatives that can happen, just like the false positives?  But I kinda feel the false negatives aren't discussed as much and I don't know why.

If people have no symptoms and have negative blood, great.  However if people are coming here, having worries about herpes and get a negative blood result, with all other tests for other infections being clear, then for me it is illogical to simply say 'trust the IGG is negative'.  Surely it is better advice for people on here to say to posters that although they may not think it is herpes (but we know how varied it can appear in person to person) there is still a chance their symptoms could be hsv and to continue getting swabs for the chance of getting a more accurate diagnosis.  I can't possibly see the harm in advising people this to be cautious rather than just saying, you don't have it, move on!   Because even if people have symptoms and test a low positive - the advice is get further tests to confirm - so why not advise the other way round?  Many cases recently also seem to be where one or both partners know they have hsv but blood isn't picking it up.  

Please remember I too am just another poster, using this informative site to gain knowledge about this very complicated virus, and help towards a diagnosis, and just opening this up for anyone who wants to comment.  Not meaning to offend at all.  Just once again trying to gain as much knowledge about this virus as possible.  S has anyone had a false negative blood test that you know of, or all you not diagnosed but believe you have hsv but blood keeps coming up negative?  Personally, I'm very concerned about having hsv, but blood was negative 4 months post encounter.

[Badmistake211]

I am with you all the way Diva, I've been going on almost 2 years now and still have non stop issues with my body. I am a male, I have burning almost every day of the penis, I've found all sorts of issus with my skin in my boxer short area, muscle twitching, blurred vision, and even have issues on my scalp now. I get leg pain and muscle twitching. Just google positive culture but negative blood test and you will find all sorts of people who have never tested positive through blood. I know my body and never had these issues before, not to mention right after my exposure I had a horrible flu, swollen glands in the neck for months, fatigue. It all happened exactly how they say it does. God bless all of you who are trying to help, but I honestly don't trust the IgG test.

[franklinandbash]

Since everyone is so obsessed with the number of 15% I will try to shed some light on the subject. Anyone that has taken a statistical math course knows that a STUDY as referred to by mistakeguy should be taken with a grain of salt as it does bot represent a true population. There are many variables that play a factor in this. First off he wasn't only referring to just hsv2. That alone raises the percentage, as the igg blood tests aren't as sensitive for hsv1. Also, you need to look at the population of the study. If you are knowingly testing people who in the past are part of the VERY FEW people who do not test accurately on igg blood tests, you can expect that percentage to rise. Also you need to look at the size of the population surveyed. If I surveyed four people and two of them had HIV could I conclude that 50% of Americans have HIV? No I could not as it is just a study. Mistakeguy or myself never claimed that to be the actual fallacy with these tests, we we're quoting a study, a study I claimed earlier needs to be taken with a grain of salt.

Regardless of my lecture on statistics, this post needs to end. You can count now that this will definitely be my last post on the subject. I apologize for my grammatical errors as I am on vacation and typing on my phone. I hope this finds Tracey and Didiva very well and herpes free. I appreciate your passion on this subject, but there is nothing more we can say.

[petal130]

Please drop the 15%. Yes you are wrong as Grace stated it's not a statistic she has ever used here. Thanks.

[Birka123]

Umm...here is where I think 15% came from - 1 out of 10 people will not develop antibodies to hsv1, which equates to 10%. then there was the saying that 5% of people don't test positive by Igg testing in general. The 15% would make sense if the 5% referred to here would apply to hsv2 only. However, noone ever specified what it actually refers to, and my thinking the right answer is that 5% of people do not test positive for any hsv (1 or 2), despite having the virus. Please correct me if I'm wrong.

[gracefromHHP]

I'm not sure where you guys have come up with the 15% stat from. it's not one I use here.

this post is going nowhere fast. It's probably time for everyone to take a few days and relax.

grace

[franklinandbash]

Good use of sources :). And Tracey no one here is a doctor. I never claimed to be one. I do in fact have a little more knowledge than the average person when it comes to herpes and it's testing. 15% was the study. Studies are not the same would it be an entire population. It is a testing subject and should only be used for consideration, not facts. Again no one will block your account. This will be my last post on this thread. I wish both of you a great day and hopefully a little break from your constant obsession over herpes and it's testing. :)

[tracey2222]

DiDiva,

I did some research about the blood test...

Question: How Accurate is the Herpes Blood Test?
Answer: No test is perfect. It's always possible for a test to give inaccurate results, and the accuracy of a herpes blood test depends on which specific test was used. The sensitivity/specificity of two different relatively standard Herpes blood tests are as follows: ELISA:
~91% sensitivity and 92% specificity for HSV-1
~96% sensitivity and 97% specificity for HSV-2
Immunoblot:
~99% sensitivity and 95% specificity for HSV-1
~97% sensitivity and 98% specificity for HSV-2
ELISA:
HSV-1: Approximately 92% of positive tests give the correct result.
HSV-2: Approximately 92% of positive tests are correct, and 98% of negative tests are correct.
Immunoblot:
HSV1: Approximately 95% of positive and 99% of negative tests are correct.
HSV-2: Approximately 94% of positive and 99% of negative tests are correct.

I wish that can help you.

[DiDiva]

no the people that i have seen definitely have waited long enough, or are in a long term relationship where both test negative on bloods but had a positive culture - then go for repeated blood and still negative.  That's where my worry comes from!

[franklinandbash]

The recent people you probably are referring to dish get their tests done at the right time. They more than likely had an initial outbreak that was swabbed and then a blood test. Some people will not test positive until the 3-4 month mark. They probably tested way too soon. As Grace said no real reason to doubt these tests

[tracey2222]

I'm agree with you Di Diva about recurrent and classic herpes symptoms with a negative blood test. It's a tricky virus.

God bless us.

[DiDiva]

I know you do Grace and it is on the whole very useful to folk.  But I even seen a few posts on here recently who know they have hsv but have negative blood.  I'm sure you can appreciate the concern this is for those who are worried about contracting herpes, or sometimes pretty sure that they have it.  I'm talking the guys with symptoms and timelines not just low risk or guilty contacts with no symptoms. Some people are chasing a mystery infection with no diagnosis coming, so surely it's not a bad thing that people want to make sure the IGG is accurate - I see people asking you over and over again if they can trust and begging you to tell them one more time if they are ok or not. So although you haven't seen it that much on forums, it does still happen. So what's to say that that person isn't one of the false negatives - there is no way to know that on a forum.  I wonder how many people get repeated negative bloods and then accept it, so never go back and get a swab done as they put down future minor symptoms to something else, so never come back to a forum.   15% false negatives seems quite a lot to me if that is an accurate number.

'you can doubt the igg tests all you want' , well, yeah!  Surely everyone can doubt them as they are not 100% accurate. Believe me, I want to believe the test - i waited a long horrible time to get one done, but when you're getting horrible crap in the boxer short area ever since, your mind kinda doesn't rest with it.  Anyways, again I'm not debating the fact that there is or isn't false results with any test - we know that there is.  Just wanting to chat to folk who may not be 100% confident in their negative blood and for what reason.  Surely you can't begrudge me trying to find answers and support for people in the same boat!!!!!!!

[DiDiva]

wasn't sure if you were male or female and if you'd positive or negative swabs?

[gracefromHHP]

you can doubt the igg tests all you  want but I only need 1 hand to count the number of people in over 10 years of being on various herpes forums who tested negative repeatedly on herpes igg blood tests and later on had + lesion cultures. Please keep in mind that just because it's genital, doesn't mean it's herpes.  I always encourage folks not to fall into the trap of thinking that everything is due to herpes.

grace

[tracey2222]

What do you mean DiDiva ?

[DiDiva]

Well, ya know what i'm gonna say!!!!!  If it were me i'd get all the freaking tests available to ya.  Knowledge is power, as they say.  It may help put the pieces of the puzzle together.

What i keep thinking is, it's either herpes that is not picking up on bloods....or another weird virus/infection that is not being tested for.  But one thing is for sure - we ain't making up all these symptoms!!  Something's going on!!!

[Birka123]

You know I'm in the same boat. Last negative test at 5 months, will be retesting again with the Igg sometime soon, as well as getting a WB. After 6 months of ongoing symptoms, multiple negative Igg tests (at 3, 6, 12, and 16 weeks), negative Biokit at 5 months, and most recently a negative swab result of a barely visible lesion that I finally got cultured. Negative for all STds and yeast at 12 weeks post exposure.  Constantly in pain, very cranky, and just seeking some closure. I will accept any outcome, just let me get there.

Does anyone else think a WB makes sense for my situation?

[DiDiva]

Oh for goodness sake.  Noooooooo.  Please don't take me the wrong way!!!!  I am NOT undermining the regular volunteers.  Or insulting their efforts to help people.  Give me some credit guys. If I thought that little of this site and the volunteers would I be using it?  Hell no.  I couldn't have got through the last couple of months without the help from this site. You rock.  I am on your side here guys!  I'm not here to argue against you and try to dissuade posters from getting tested, I just think sometimes people leave the site fully confident in a negative test, which may need more investigation. THAT's ALL!!!

I posted this to discuss with others who may have had a negative igg which turned out to be false, or people who are having false blood tests but are having trouble settling with that cause theyre still concerned about having herpes. Is it not better to discuss this all on one thread?  To share worries and experiences of what we're doing to try and get a diagnosis - for something!!!  It was not meant for the 'regulars' to quickly jump on board and attack me or feel the need to defend and justify the advice you give!   Seriously, not.

( and i wasn't the one who said you'd delete my posts - i know you're not that mean lol :)


Now please can we stop this.  I appreciate the advice on this site.  People are very knowledgeable and helpful and complete saints for giving up so much of their free time.  Ok?  Can we get back to the point of the thread?

Personally, although I think the advances in science mean the herpes testing is obviously better than it has ever been....15% is still quite high for me....but that's just me!  

I just wanna discuss with any others who are having a hard time believing their negative bloods?  Anyone out there in the same boat?

[franklinandbash]

As mistakenly has stated only 15% of people in the last study have the problem you are discussing. The igg tests are lightyears beyond what was once herpes testing. They follow the Utilitarianism school of thought, which most medicine does, i.e. the greatest good for the most people. As said most people, not all people. The 15% are the what would fall under the not all people category. That being said, no test is perfect. These issues will be around for as long as we live. This site does not delete any comment that disagrees (respectively, of course) with any opinion that you have. Our goal here is to not have you agree with us, but to give you accurate, non biased information. We will however correct information we feel is not accurate. I myself need correcting time to time and let more experienced posters take the tougher questions. Diva if you really cannot trust the testing as you have stated many many times, then there is nothing more anyone can do here. If you want people to know about the false negative/ positive issue that's fine, but please never undermine the advice given on this site from people such as mistakenguy, grace, or
petal. I'm not saying that you have but it's clear you have issues with some of the things that are said  Steering away people who may need blood testing is
an insult to the people who put the time and effort into this site.

[gracefromHHP]

you haven't had any + lesion cultures correct?  

grace

[Mistakeguy789]

*sigh*

I think everyone that is commenting here saying this is a public forum needs to re-read the read before posting and the terms of service.  This is a patient to patient forum.  Our goals are listed on the main page for the forums.

I disagree with DiDiva in that the issue of no one here saying "Trust your IGG move on".  Many times I myself and others have told posters at some point you have to trust your IgG testing and move on.  After that we follow up with if you have symptoms be seen for a proepr work up and to be seen within 24-48hrs for the best results on a culture/PCR.  

Regardless the fact is that about 15% of people (if I recall from the last study) will not show positive on the IgG testing we have out.  The CDC is aware of these numbers and the fact is majority of people will test positive.

We do discuss these issues.  Maybe not to your liking but we do.  Now if you want to make a form response to every poster that states "These tests could be a false negative and should be confirmed by additional lesion culture swabs whenever you have symptoms to ensure they are not related to Herpes Simplex Virus types 1 or 2."  Feel free to do so.  I mean honestly you want to speak of the issue that is fine.  We don't have a problem.  But given how many people will test positive on those tests you might have some fearful poster spending 150+ dollars each time they get a swab culture done.  Not only that but flooding of doctors office for each and every bump someone gets.  Which even at that we do recommend people have cultures and seeing a trained medical professional with symptoms present.  Bumps painful or not are not just limited to Herpes...

I may comment later.  

[tracey2222]

I respect all opinion from other here but the other people must respect other opinion and not delete it.

Did you have any swab test for you  red bumps on buttocks ?

My partner has the same symptoms like me but he never tested positive by any blood test for HSV and he got a recurrent outbreak every 3-3 months. He does not wanna believe he's negative from the blood test with the recurrent outbreak and me either.

Thank you.

[DiDiva]

read your posts but can you clarify - you got diagnosed by blood test only?  And have 'obvious' outbreak symptoms?

[DiDiva]

just read a couple of your other posts...and i'm a little confused what your situation is tbh.

[DiDiva]

I couldn't have said it better myself.......