Herpes testing

Hi

I was tested for herpes after an incident early last year which involved oral sex and vaginal sex. The vaginal sex was for a minute before I put the condom on.  That night I had some anxiety about what had happened.  3 days later I started to experience a pain around the anus as well as frequent urination.  Everytime I lots of urine would come out.  I also had swollen testicles. 5 days later I experienced burning on the buttocks.  There was also low back pain.  1 month later all these symtoms (symptoms) stared again but the burning buttocks lasted for 1 week and was always in the evening. I also experienced a sharp shooting pain whilst driving down my right leg and penis on one occasion. The symptoms resolved once more but I was left with severe back pain and intermittent buttock pain.
4 months later same symptoms once more but now lasted 2 weeks but would involve instant burning on buttocks when i sat down and wouod happen in daytime.  Once again resolved  but was left with severe all round ody pain.  This i know now is from all the bracing/muscle tightening I was doing whilst I was in pain.  Might be helpful for some others to note that it is probably the bracing that causes 1.pain in a lot of areas when someone is going through an OB because they are tensing muscle groups for extended periods.  2.IBS is also caused by this muscle tensing as when one is scared when having the OB they are inducing fight or flight response. This means all their blood is going away from their stomach/gut for extended periods thus causing IBS.  This is dangerous for extended periods as it can lead to dysbiosis, candida, parasited, leaky gut and hence more OB's.  Eventually if in this state too long many serious comlications can  arise so get the stress down. Also I hear a lot of people complaining about fasciculations- they happen due to the bracing because bracing is a constant tension of muscle which then means you are using up more magnesium.  It is just like when a sportsperson gets twitches.  Increase magnesium intake!!  So why am I writing this? Well because it appears that this virus does affect people differently and unfortunately it appears the medical community does not know enough about it to give accurate advice.  I was fobbed off by the GUM clinics three times saying I didn't have herpes.  I then did a blood test privately and had the following results:

HSV1 igG AB  3.2 positive >0.9
HSV2 igG AB  0.04 negative

This was 10 months after exposre.

By the way just thought I woule mention the nurse at the practice initially tested me by urine sample (PCR) and said that this test was 100% reliable. My results for that came back negative and I later found out that this type of testing is useless unless the virus is in the genital tract and is ofcourse active.  She even had the nerve to tell me it would always be positive if I had herpes.  JUST IMAGINE ALL THE PEOPLE THIS PRACTICE/NURSE HAS TOLD THIS INFO TO!! There must be many people walking around thinking they do not have herpes.

Then just to be doubkle sure of this result I did another blood test by PCR for antibodies for HSV1 5 weeks later.
However this came back

HSV1  IgG AB  0.23   negative

I was ofcourse shocked becasue how can i be positive just 5 weeks earlier?


Then I repeated the test 4 weeks later and this time also did HSV2;

HSV1 IgG  AB  .32  negative
HSV2 IgG  AB    undetected.


I must say that the first test was done  in a different lab from the last two negative tests.  Now what do I do from here is my question. Am I negative or positive.  If I am negative what about symptoms of urinary urgency, swollen testicles, buttocks burning which have all happend in 3 seperate episodes.  HOW DOES ONE TRUST BLOOD TESTS???????

[Aelly]

First off, you must post this question in the Herpes Community for further and better prognosis of sorts. Second, no std causes these types of symptoms you describe, so, it is quite possible this may be of a different ailment. Third, HSV results you posted of the two testing occasions might mention of a false positive or an indeterminate result for HSV I. There are tests from urine samples, cultures, and blood tests but here, we recommend culture swabs and blood tests. From the blood tests, you have IGG and IGM testing. You took IGG tests which are more reliable than IGM. The burning or itching around the anus could be a result from pruritis ani or commonly known as anal itching.

[gracefromHHP]

pcr for herpes on blood is almost always going to come back negative. It shouldn't be ordered that way on adults. It's only helpful on blood with neonates and some newly acquired herpes infections. unfortunately once again you've had poor testing done.

Having hsv1+ blood test results in the UK is not unusual. The rates of hsv1 orally there are as high as the US and most other industrialized countries.  Even if you can't recall ever having had an obvious cold sore, odds are your hsv1 is oral.

At this point blood testing for herpes isn't really all that worthwhile for you. when you have symptoms, be seen and get an exam and thorough testing done. If you can't let go that this has to be herpes, lesion cultures ( preferably pcr ) of active symptoms is the most helpful but they should be done within 48 hours of the start of symptoms.  

if you suffer from IBS, there are all sorts of issues that can go along with that including yeast infections from poor protective flora in the bowels as well as hemorrhoids, both external and internal, which can also cause pain issues of far more than just the literal pain in the butt.  

grace

[AJ147]

Hi Grace,

I am confused by your comments. Firstly I have been told PCR is the most reliable.  If not what is "thorough testing?". I have never had lesions but that is not all that uncommon as I am sure you are aware.

Secondly I have not had the classic what I consider to be my OB symptoms since November which includes swollen testicles, urinary urgency and burning buttocks.  All I have now is the pain leftover from me tensing my pelvic + other muscle groups.  So how does one diagnose. Are you saying that there is no accurate blood test in the UK for this virus???  If there is please divulge.  Also how do we go about getting an opinion from one of the MD's?  Thanks.

[gracefromHHP]

pcr looks for actual herpes dna from the sample. herpes is not a blood borne virus so using pcr for routine herpes testing via blood is a waste of time and money.  

you had accurate igg blood testing once in the UK so you already know you can get accurate blood testing firsthand.  

you have to pay to post on the experts forum to get a doctor's opinion but even they will tell you you won't get much different advice as from what I give. I'm just cheaper than they are ;)  

swollen testicles, urinary urgency and burning buttocks are symptoms of many different infections, not just herpes.  odds are your symptoms are not related to herpes which is why being seen when you have them the next time is important.  have they been doing rectal exams on you too with your symptoms?  

grace

[AJ147]

Hi Grace,

I have had 3 rectal examinations done. The first by a gp, second by a urologist and third by a surgeon/consultant. Nothing abnormal found.

I think we are getting confused about the PCR on the blood. The testing for the three occasions was igg blood testing. This is why I am confused. Why is it positive first time and negative twice after.

One thing I must say is that the first time I did the test the actual blood was transported to a lab that was independent of the GP and the sample travelled 200 miles. The second and third time it was carried out by an actual microbioligist. Would transit, testing lab etc have made a difference?

Also I have spoke to many on other boards who carry on getting negatives but know they are positive as they have had positive cultures.

Lastly I would like to add that this virus as you can probably agree  affects everyone differently.  Some/many dont get any symptoms while others get urinary retention, PHN etc etc.  

[gracefromHHP]

it's only a very small percentage of folks who have this many negative blood tests and still really have herpes causing their symptoms. hsv1 genitally tends not to reoccur very often so it being the cause of your symptoms is pretty low too.

you did have a pcr blood test from what you posted in your original post hence my telling you pcr on blood isn't worthwhile.

also as I said, blood tests at this point aren't what you need, exams and lesion cultures if you still need to rule out herpes in your head for peace of mind.  

grace

[AJ147]

Hi Grace,

I will check with the provider of my second test to see if it was indeed Pcr.  He did a full work up so maybe i am confused as to wether it was pcr or igg blood tests.  I  will check with him. in the meantime you are saying wait for a lesion but maybe i will not get one. Do you think it is advisable to get ihe igg blood test again just to double check? My current situation is not desirable as I have back stifness most days which comes and goes aswell as pain uypon sitting. I am pretty certain it is PHN.

[gracefromHHP]

you can do pcr swabbing on the anogenital area when you have symptoms. No need for an obvious lesion to be present to swab.  

honestly at this point I don't recommend any more blood tests.  

have you looked into theraputic massages?  loosen up your muscles in your back and around the hip/pelvic area. It's really helpful sometimes for both pain management as well as getting the muscles loosened up so you remember how to relax them again.

[AJ147]

Thanks Grace for your info and you are right about getting my muscles relaxed-I am and have been in a constant state of tension since this "event".  It seems that the body can do crazy things when under stress.

Why do you not suggest any more blood tests? Is it because you assume I would be positive for HSV1 due to its prevalence as you mentioned before?

So does that mean I could potentially never find out if I don't get any more symptoms?

Sorry for all the questions but I hope you appreciate that I need to understand this fully. Many thanks.

[AJ147]

Hi Grace,

Just one more thing.  The tests above say IgG so how can they be PCR. I am a little confused. By my understanding a PCR test will look for the virus as you say so my 3 results above are giving the IgG no's as in all tests which look for antibodies.  I would really like some clarification on this if you do not mind.  Many thanks.

[gracefromHHP]

you wrote pcr blood test originally hence why I mentioned the pcr on blood testing.

you are very unlikely to have hsv2 with all these negative herpes tests. if you have symptoms, be seen promptly and if you need the peace of mind, a lesion culture is what should be done at this point, not more blood tests.

unless you get test results we can help you with, really not too much more I could possibly help you with to be honest.

grace

[AJ147]

Hi Grace,

So that I can get my head round this will a blood test by PCR give the IgG no's as in my test?

[gracefromHHP]

I admit, this last question has me confused. can you try asking it in a different way because I'm really not sure what you are asking me.  thanks!

[big_dan]

i think what he is asking is if the pcr test gives the same sorts of range of results as the igg blood test (less than 0.9 greater than 1.10) and something like 2.4 or 6.8.

i had the pcr blood test done while looking for acute infection and the result i was given was in terms of NOT DETECTED.  i don't think it uses the same "range" or result numbers (no's) as igg test.

[gracefromHHP]

dan - a pcr blood test will almost always come back as negative.  herpes is not a blood borne virus so you can't expect to find it in the blood ( the only exception is in neonates and a percentage of adults when newly infected will also have a general viremia but it doesn't last long ).  and no the pcr blood test doesn't give a range or numbers. it's either + or - for herpes.  we NEVER recommend the pcr blood test for herpes for a way to diagnose herpes.

grace

[AJ147]

Grace- my testing as I am yet to find out gave a result which said .32 < .90 negative and for HSV2 said undetected.  My friend wanted to test and with the same lab got both HSV1/2 as undetected.  Both of us went to a different lab and had HSV1 positive at 3.2 for me and 2.5 for him.  However HSV2 was negative for both of us.  I am wondering wether the test that said was indeed PCR.

[AJ147]

Hi bigdan

Just wondering how you got your result as not detected when you had symptoms. Also in my testing it does actaully say IgG after the numbers so does that not mean it is IgG and not PCR.  My result said as in my post above below .90 so negative but for HSV2 it said undetected. Does that mean antibodies detected for HSV1 and obviously none for HSV2. If there are antibodies detected as in my HSV1 test how can it be negative.

Also Big Dan am I right in saying that you experience/d extreme nerve pain with your herpes?  How were you diagnosed?

Thanks

[gracefromHHP]

no, it wasn't pcr. pcr never returns with numeric value.

[AJ147]

So what do I make of the test results?  As I said earlier the first set of results which were positive for myself and my friend came from the same lab then we went to a second lab 5 weeks later.  Both results came back negative for the both of us.  Just to make sure the microbiologist tested me again 4 weeks after that.  Have you seen many with say a positive first then a negative, say twice?  I have been advised by some that they get lesions which are positive for herpes but still get negative blood tests?  Can that be true?  Thanks

[gracefromHHP]

no real reason to doubt that you have hsv1. odds are it's oral.  even the best blood tests still miss 1 out of every 10 hsv1 infections so having a + hsv1 igg at one point and then negative tests later on isn't all that unusual.

any further questions about your testing should be asked on the herpes expert forum. You have to pay to post there but at this point it's probably your best follow up on this.

grace

[AJ147]

As a follow up Grace I was wondering if the odds for a false positive are as high as 1 in 10 what are the odds of a false negative?

Secondly we all know anxiety can do a number on a lot of people but in my case it is either that I have genital herpes or my anxiety has caused what someone called "hysteria".  I am dubious of this as if this was the case my symptoms would not necessarily start and stop like they have been doing. Saying that you must have read many things people have said on this website where the symptoms are so varied and "out there" so to speak that it is obvious that it is not STD related. Could you be so kind to highlight any as I am really concerned about my situation. I have not been dealing with it too well shall I say. Thanks

[gracefromHHP]

of all the posters we get who come here convinced that what is going on just HAS to be genital herpes despite negative test results time and time again, the vast majority never come back as eventually finding out that indeed herpes was the cause of their symptoms ( I can only recall 1 poster that ended up actually having herpes be the cause of their symptoms ). Indeed anxiety can do a number on you and cause you to actually have symptoms that you wouldn't have had otherwise .  

[AJ147]

Thanks Grace, the ironic thing is that I have actually come to terms with maybe having herpes. What really bothers me is not knowing. I never knew what  seemed like the deep dark realms of the std world and now I know many things and the truth is our bodies are designed to cope with the majority of them but other things get involved and make the situation worse.
Sometimes the idea of having something is worse than the actual disease itself. I have personally been through what I would call hell but everyones idea of hell is different. The problem is I have been suffering for a year and when you dont know what it is it makes it 10 X worse. Thanks for the reply.