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Avatar universal

Positive swab, negative blood test

I have "had" Herpes for almost 10 years. For the first 5 years I had constant reoccurring genital lesions which always tested positive when swabbed for HSV-2. Then for 5 years no lesions anywhere. Now within the last 2 months I've had genital lesions twice. I've had blood tests numerous times over the years and they all come back the same: Positive for HSV-1, Negative for HSV-2. But the last 2 outbreaks I've had have come back Positive for HSV-2 when swabbed and Negative for HSV-2 when blood is drawn (tests taken at the same time).
What is going on?
11 Responses
Avatar universal
what kind of blood test did you have done exactly? What were your numeric results? Was it an IGG or IGM test. ??
Avatar universal
RESULTS:
HSV Virus Culture, Rapid Method:
HSV-2 isolated

HSV IgB Ab, EIA
HSV-1 IgG Type-specific Ab >5.00 H index <0.90
HSV-2 IgG Type-specific Ab 0.17 index <0.90

RESPONSE FROM DOC:
Basically all tests are normal or negative except the herpes test which gave conflicting information. As you know the culture test showed + HSV-2. However the blood test showed + HSV-1 and - (negative) for HSV-2. I have discussed this conflicting result with lab specialist and they were a bit perplexed about the conflicting information. Not sure what to make of it. But it was definitely HSV or Herpes that we cultured.

I (confused8462) don't know what method Kaiser uses for blood testing or what those numbers mean. All I know that after 10 years of this crap and not knowing I would really love an answer! Thanks!
Avatar universal
This is what I have been scared of where the test fails to detect antibodies in people who actually have the virus(atleast based on the culture tests) and are outside the window period. This would mean that all of us who feel free based on the blood tests being negative actually could have the virus. Basically we should not trust anybody who says they are herepes free based on blood tests.
101028 tn?1419603004
your lesion cultures being positive means you really do have hsv2. you have no reason to doubt that at all. no reason for any more blood testing for you to be honest. odds are you'll never test + on the igg if you haven't yet.   It says nothing about your herpes, just a small percentage of folks won't test accurately on the blood tests we currently offer.

honestly it was just a matter of time until you got more visible recurrences.  if you are female , getting properly tested for yeast and bacterial infections vaginally is never a bad idea to make sure they aren't adding to it.  

do you treat your herpes?

grace
Avatar universal
This is why testing should not be completed for this stupid virus unless someone has outbreaks that are incredibily overwhelming with HSV characteristics.  Its like doctors dont want to admit that these tests absolutely SUCKS because all docs, and drug companies care about is money.

I am so sorry your going through this. Grace- how small is the percentage of people who dont test accurately on the blood tests? do researchers know why this happens??
101028 tn?1419603004
we don't know exactly why not everyone produces the part of the igg response to infection with herpes that most of the tests we use look for.  Each brand of test looks at a different part of the igg response which is why some folks get more benefit from testing with different tests ( like the article you posted yesterday I believe it was - it backs  the biokit increasing the positive predictability of the herpeselect because 2 tests that look at different parts of the hsv2 igg response do make it more likely you have confirmation of your infection - which btw that article is one we reference in the false positive post we have going here on the forum too though Terri recently replied that it's based on the original herpeselect test, not the newer version of the last 4-5 years ).  There are false negatives for every single test you've ever received in a lifetime.  If you started looking closely at the false negative odds for mammograms, pap tests, biopsy's, blood work etc, you'd start wondering why you even bother to go to a doctor and don't just go back to the old days when you went to the local barber and they just cut your skin and let you bleed the "demons" out and hope you survived to tell the tale. You can argue the effectiveness of every test ( and immunization ) you've ever received  in general based on the odds of ineffectiveness of them on an individual but it's the big picture of their effectiveness on the  majority that makes them worthwhile.

also I know you are frustrated with your own testing experiences but please remember that for the vast majority of folks who utilize the herpes blood tests we currently have, they will give accurate answers.  Your own situation certainly is not going to be the same as someone else's and raising doubts about testing for most folks, isn't really helpful to them  Research backs why these tests are helpful for most people as a starting point.   we try to support and educate folks, not make them doubt their testing needlessly.  everyone's situation is different and I know my replies and Terri's are specific to the information provided by them and the testing they've had done and follow up recommendations are based on the posters individual situation based on what they tell us.   She and I have both been doing this for you ever since you started posting here too.

you've given some  terrific replies here on the forum asianlore - I'd love to see you continue to make the supportive and informative replies you've given in the past because most of them were quite helpful to posters. just remember that folks need support for their situation first and foremost - not  potentially needless doubt about what testing they've had .  saying testing sucks is not really helpful to folks who will get accurate results from their testing.  If your weather forecaster on the local news said a 5% chance of rain today, I doubt you'd pick up your umbrella on your way to work - you'd be more likely to say you'd take that chance and go without. Same applies for most folks when it comes to herpes testing - it's going to give them the answers they need with just one test.  Focus is even once again doing trials on their current revamped version of the herpeselect to tweak it even more so hopefully we can get that 5% down to even lower for herpes testing in the most widely available herpes blood test we have in the US.  some of the quest labs already automatically double check low positive hsv2 igg's too with the inhibition assay.  This issue is certainly not being ignored and I applaud focus for being so open and honest about their test which is something that captia  and zeus and other tests aren't being so good about.  Not often you see that in medicine in general to be honest.    ( no I don't receive a cent from any drug company or testing company either )

grace

Avatar universal
grace- thanks for the post. I try to stay optimistic for people who post on this forum and for myself.  As far as my views on testing, I know the tests are reliable and studies have shown that they are accurate, but nothing is certain 100% and because of that, I cant be convinced 100% that i have hsv 2...especially with a negative partner who is may be in confused8462's position and with no clear symptoms that I have experienced i am hanging onto the 5% chance that i dont have this virus. Its incredible that docs cant explain the reasoning for people testing false positive.  it would give us more answers. What is the harm in doubting the results if its not proven to be 100%, I know it gives me hope. I think other people deserve that hope.

  I guess nothing in life is certain.  The analogy you used with a 5% chance of rain, I am the type who would bring an umbrella, and thats why its hard for me to put this to rest. I work in the field of investigations as well, so i am by nature and by trade inclined to find/ collect facts that have 100% reliability that can be proven.  So I would use the following analogy:

I wouldnt put someone in jail for the rest of their life if I found evidence that  with 95% reliability proved them to be guilty... I would need a 100%, especially if someone's life was on the line, in this case, its my life. Im not going to sentence myself to a world of psychological distress, when there is still a chance, even though it may be small, that I dont have this virus.  Its not good enough.  I think 5% leaves room for reasonable doubt.

Im sorry if I sound cynical at times, and I will be more aware of what I say on this forum in order to remain supportive and informative. Thanks Grace. Merry Christmas :)
Avatar universal
Grace and Asianslore

I like both of your responses and both of you have a point. Grace, you are coming from the greater common good perspective and if out of 100 people on this forum, 95 get the right results you would be satisfied because that is a tremendous help to 95 out of 100 people and as an individual that is near maximum benefit. We all commend and laud your efforts sincerely. Asianslore, you are in that 5% individual cases and for us it is "us" first before the rest of the 95 and that is how it is for each of us who posts here expecting a response,"how do I know my status?", we don't generally worry about the rest of the 99 and so for us 5% uncertainty is pretty huge.

I would like to point out that the 5% inaccuracy is on sensitivity, that is false negatives. This is what is difficult to get by. This usually means that the person , who may have herpes, hasn't produced antibodies. This person cannot use the WB, if I am right, to get a better answer because WB also checks for antibodies and if the blood tests did not detect antibodies the WB will most probably not either(assuming beyond the window period). So these 5% folks can only hope for symptoms to appear and go get checked when symptoms appear, there is no way out for these people. Are there research papers that compare antibody based testing to culture tests? Most of the papers published are comparing blood tests to WB, which is because of the assumption that everybody produces antibodies and so the metrics conveniently ignore people who may never produce antibodies in the first place(WB and Focus look for antibodies). Are there publications that compare how many individuals tested correctly with WB/bloodtest as compared to culture tests? That will give you the number of people that actually don't produce antibodies at all.

As for Asianslore's question. If it is a case of false positive, I think you are a little better. False positives can easily be confirmed with WB i.e. if serology says you are positive, it has supposedly detected antibodies. If this is true WB WILL detect the antibodies no matter what. So if you go on with WB and WB tells you they are negative for antibodies, the serology had a mistake in the first place and you can trust that this was a false positive.

However, that does not completely clear you of the infection, why, because of the 5% of people who never produce antibodies, described above.

As for medical tests not being 100% always, there is a big difference here. If tests are not 100% due to human errors that is quite understandable i.e. cases where reagents were not effective, lab technician made an error, blood was not transported correctly etc... These can be eliminated by repeat testing. you basically can get to near 100% accuracy by testing about 4-5 times say, because each time you reduce the probability of the error by a significant proportion cumulatively.

However, if the test is producing an error due to its underlying premise, such as "antibodies need to be present", then irrespective of how many ever times you test, if you don't produce antibodies, you will never test positive. This is a FLAW in the test principle as opposed to actually saying all medical tests have an error rate because of lab errors etc.... which can be reduced drastically by repeat testing.

So, in summary, if you don't see symptoms and test negative, you have to only assume you are negative and not in the 5%. This is a tough situation and basically there is no way out as you don't have symptoms.

If you see symptoms and test negative on blood, you should go in for the culture test (preferably PCR) and look for negative results. Even if you get negative results, you need to get a sure differential diagnosis in this case to be sure you are negative. If you test positive on the other hand with PCR, you are in that 5% that don't produce antibodies but are really herpes infected. Good news, you atleast know for sure.

If you see symptoms and you test positive for antibodies by blood test and WB, this is also a sure positive and you don't need further testing.

the problems are for negative testers with no symptoms/negative testers with symptoms that could not be immediately checked/negative testers with symptoms but no differential diagnosis.
101028 tn?1419603004
this is way getting off the topic of the original poster.  any further posts that don't apply to the original poster needs to be addressed in your own posts.  

If you have questions about the way research is done, pay to post to Terri. She is actively involved in most of the research we talk about on the board and she's the best person to ask.  Never assume that the folks who are doing it are remotely stupid either.  yes indeed there are multiple studies that involve lesion cultures, daily pcr swabbing and multiple blood tests to come to the results they did.  These aren't college students publishing research that has the potential to be very flawed.  

there comes a point where you have to remind yourself that there is only so much you can do and it's no longer worth worry and testing.   Not sure why folks have such a fear of herpes that they won't even believe repeated negative tests.  If it was my own child, I'd give the same advice I give here to them too.   If at 6 months you don't have any + lesion cultures or any + blood tests, it's time to throw in the towel and stop thinking herpes. It's not really the grey area you make it to be in general.

grace
Avatar universal
You are right Grace, I don't want to take away from the original poster. Sorry, I am just frustrated with the symptoms I have had and have been doing a lot of research to make sure I can find out what is going on. Hence the need to share. I apologize.
Avatar universal
i'm glad you all got off topic because all of this was very helpful and hopeful to me.
during the first of this year a painful lesion appeared on my vulva two days after unprotected intercourse. it wasn't going away and hurt when i urinated so i went to the doctor and during the exam she stated that i most likely had genital herpes. being a woman of faith {believing that God is the greatest healer and has the final word}, a few days later i prayed for healing with a group of other believers and the sore went away that night with no scabbing at all just smooth new skin.  a week and a half later my culture swab results came back positive for hsv-2. my emotional state goes back and forth from being completely sure in faith that God did a miracle on my body to the fearfulness and sadness that comes from the results of a piece of paper that pronounce STD on your life. i'm going in for a blood test in a month and a half to see if any evidence of hsv-2 antibodies shows up. and if it's negative and in 6 months I still show no symptoms of infection with a recurring outbreak, I'm going with Grace's advice and throwing in the towel....
because there are miracles and God is real.
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