HerpeSelect - How accurate?

I have been having symptoms of herpes for 10 years now (blisters, clusters of open sores, pain) but I have taken the HerpeSelect test TWICE and both came back negative. This is really confusing to me because my symptoms are like herpes. Is the HerpeSelect test accurate after 10 years? I had the test done 10 years after my first outbreak.

[waringblender]

So in all of that time, you never had your symptoms cultured?

[Confused_08]

No, I was young and in denial. When I got to an age where I was ready to accept that I may have an STD is when I took the blood test.

[waringblender]

So if you have now "accepted" it, why have you still not had cultures done of your sores? I think until you do that, you don't know for sure you have it.

[Confused_08]

I will do that but in the mean time, why are my blood tests coming back negative when I have these symptoms.

[waringblender]

Because it's possible your symptoms aren't herpes.

[Confused_08]

The purpose of my thread was to see if this happened with other people and to see if the Herpeselect test is accurate after 10 years. I already know what you are saying, (get a culture, possibly not herpes) but I wanted more feedback from other people oppose to someone telling me the obvious.

[waringblender]

If you don't understand "the obvious," then somebody needs to tell you, I guess. Why would the test not be accurate after 10 years? If you are positive for herpes, it will show up as a positive test. If you are negative, it will be negative. If you have numbers that are questionable, i.e., low positive or false positive or whatever, you can get another test to verify the accuracy. Since you never posted your numbers here, nobody can help you with that aspect of the testing.

You say your symptoms are "like herpes." Has a health care provider ever told you that? Were they ever even looked at by a doctor? If not, then you don't know what they are, unless you have some kind of dermatologic training that gives you the ability to "self-diagnose."  If you get sores, get them cultured. Until then, just assume you are negative.

[Confused_08]

Yes my GYN told me my symptoms were like Herpes and that was probably what I have. So she suggested I take the HerpeSelect test. And the results came back negative. I'm thinking about seeing an Infectous Disease Specialist. I just don't feel like going through hassle of getting a referral. But I still wanted to see if this has happened to other people.

[waringblender]

You don't need an I.D. specialist. They are not going to have anything to tell you. I doubt your doc would refer you to an I.D. for something like this. You need to have your cultures lesioned. If all your doc did was look at the lesions, you still don't know if they are related to herpes. Sorry. You seem unable to let this go, though. And for 10 years. Wow.

[Confused_08]

I don't understand why an Infectious Disease Specialist wouldn't be able to help me when their name is "Infectious Disease Specialist." Wouldn't they do the cultures? Give me another suggestion for a Herpes test.

[heatherblue]

it has taken me 10 years too.   i was also young and in denial, so i know how you feel.  a new can of worms has been opened because i am in a new monogamous relationship, where i have to face my fear.    maybe confused is dealing with something similar.
but i would think your gyn should be able to help.   that is what they go to school for.    is the blood test supposed to be the most accurate if there aren't any lesions present?

[waringblender]

It's not for you to decide whether you need a specialist - that's for your family doctor/ObG to decide. And cultures of lesions can just as easily be done by your family doc/ObG without wasting a specialist's time. You wouldn't go from a family doc to an I.D. specialist for this sort of thing anyway. You would probably be referred out to a dermatologist if your family doctor/ObG couldn't figure it out.

My guess is that any cultures you have done of the lesions will be negative for herpes.

I'm always surprised when folks decide that they need to be seen by a specialist without even consulting with their family doctor first. Knock yourself out trying to see a specialist - most specialists are not going to see you without a referral from another doctor unless you want to pay their fee out-of-pocket, and even then they would want to know why you are being seen. Just because you believe you have an infectious disease doesn't mean you need to be seen by an I.D. specialist. Many infections can be taken care of by your family health care provider, whether that's your G.P. or your ObG.

[cowgirl42]

"You don't need an I.D. specialist. They are not going to have anything to tell you. I doubt your doc would refer you to an I.D. for something like this. You need to have your cultures lesioned. If all your doc did was look at the lesions, you still don't know if they are related to herpes. Sorry. You seem unable to let this go, though. And for 10 years. Wow. "

"You need to have your cultures lesioned."   LOL....I needed the chuckle, thanks.

[gracefromHHP]

Yes the herpes select is still accurate 10 years after possible infection.  

At this point I recommend getting the supplies at home to do some home pcr swabbing. The next time you have genital symptoms - swab the lesions ( it's easy as can be - wet the sterile q tip, rub it all over the lesion ), put it in the transport medium and then drop it off at the lab/clinic for testing.  That way you aren't trying to get in to be seen within 24-48 hours of the appearance of lesions.  If you are negative for herpes via pcr when you have active symptoms then it's time to pursue a further work up.  

There are some folks who will never test + on the blood tests we have.  For folks like that -  a lesion culture of active symptoms is the only way to diagnose them. It's a small percentage of folks who this is an issue with but it could be the case for you.

grace

[gottabelieve]

Grace,
This is what I have been wondering....what if the antibodies havent shown up in my test yet or I am one of those few who dont test +. This might be whats happened to me with all my negative tests...and I have only taken one post 4 months. Maybe this person should take a WB test. I am thinking maybe I should take herpes select test at 6 months and if its negative maybe do a WB. I still have major pain in my buttock and pelvis...sometimes it makes it difficult to work out. I havent seen any new lesions and am no longer taking the valtrex....

[gracefromHHP]

Just pain in the your buttock and pelvis is not herpes. The reason I recommended what I did to confused was based on actual lesions in the past.  

grace

[gottabelieve]

grace
well i am saying that i did have a cluster of blisters at 8 weeks of exposure and had a doctor tell me that it was herpes...i have also had other different symptoms besides the pains.....so it is somewhat the same as this persons but my doest reoccur as much

[gottabelieve]

i know your sick of hearing from me but at this point i really dont know what to do honestly....i just dont feel right at all and its getting fustrating....

[Confused_08]

Do you know where I can get the home kit? Any recommendations? Also, do you know why some people test negative?

[gracefromHHP]

It's not a home kit you can just pick up anywhere. Your doctor will need to give you the supplies.  If your doctor won't look into this for you then I recommend you contact the westover heights clinic in portland, oregon.  You can pay to get a telephone consult with them and they can arrange for it to be done for you.  The easiest option is for your doctor to just arrange for this for you though.  

why do some folks test negative? Well everyone's immune systems are different.  The herpes select test looks at specific parts of the igg response to being infected with herpes.  The WB looks at an even bigger part of the igg response which is why it often will pick up on a herpes infection that other blood work has missed.  for some folks - their bodies are just different enough that they aren't producing the igg parts that the tests we currently have look for.  Those folks still though shed the virus actively so that it can be detected thru lesion cultures.  PCR is the most accurate way to culture since instead of relying on actually growing the virus in the lab it looks for the dna of herpes in the sample.

grace

[gracefromHHP]

I've already been dealing with your concerns in your own threads.  At this point there is nothing else that can be done until you get symptoms to culture.  i know it's hard waiting but there's nothing else at this point that can be done.  

grace

[Confused_08]

Hi Grace,

Excuse my ignorance but what is PCR? Also, I see you are from PA. Are there any clinics you can recommend I can go to to get the WB and the PCR? I don't want to go to my family practice. I've been tested twice and I think they are naive and think that's what I should rely on. They never said this but I feel it.

[Confused_08]

Hi Grace,

Excuse my ignorance but what is PCR? Also, I see you are from PA. Are there any clinics you can recommend I can go to to get the WB and the PCR? I don't want to go to my family practice. I've been tested twice and I think they are naive and think that's what I should rely on. They never said this but I feel it.

[gracefromHHP]

PCR  (  polymerase chain reaction )  is a way to test for many things ( google it for more info if you want it ). When you are doing a pcr test for herpes it specifically looks for dna that is specific for herpes ( they are always running evidence for pcr testing on CSI - think of your genital area as a very special csi episode....he he he ).  

The WB is only done in one lab in the entire US - the U of washington.  http://depts.washington.edu/rspvirus/herpes.htm  is their website - it has all the info any doctor you see needs to send off a blood test to them for a WB to be done.

Hello fellow PA'er!!!  I don't have any real suggestions for better clinics to be seen at :(   Why not give your gyn a call and let her know what you've found out ( tell them you talked to one of the folks at  ASHA - I'm a moderator there and that sounds better than just some chick you were talking to online...he he he ) and this was their recommendation and see if your gyn will follow up from her side on it all.  I'd recommend an infectious disease doc in theory but the problem is - unfortunately many of them don't know as much about the intricacies of herpes testing as I do :(   I just don't want to add further to your frustration with all this.  

Let me know how else I can help you with this.

grace

[Confused_08]

THANK you so much for all your help. You have provided me with the type of answers I was looking for.
The only problem I'm having is my doctor's office. My GYN is my primary doctor. So I feel uncomfortable going to her about this. Like I mentioned in another post, I think she thinks I should just go off of the Herpeselect. I want to look for a STD clinic to do the tests you have suggested.

[gracefromHHP]

Why not do a phone consult with westover heights then? It's an initial consult fee of $75 I believe that gets you a phone consult.  Terri will help you figure out what additional testing would be worthwhile with you then and arrange for it.  You can do the pcr at home and mail it in.  I"ve done it myself and it's easy as cleaning out your ears is ( just cleaning out different body parts! ).  

Wish I could recommend a decent doc for you but to be honest - I work in a major medical center and have had to teach them most of what they never knew about herpes :(  It's so frustrating that something this common just isn't taught as in depth as it needs to be....sigh.  You can try calling your local health department std clinic and see if they offer pcr swabbing of symptoms too. Might get lucky there.  http://www.health.state.pa.us/php/std/stdcount.htm  is the website with them all listed to see which one is near you.

grace

[Confused_08]

Yea, instead of my primary Doctory saying, aw well you don't have Herpes, she should have said let me investigate this more and find some more testing for you. But I think I'm going to call westover heights. Will the $75 fee also include the testing costs? How does that work?

[gracefromHHP]

Testing costs are extra.  they'll go over those prices with you during your consult. They are still WAY cheaper than most clinics are!

grace

[auntiejessi]

Confused -

Was your hsv1 test negative as well?  Perhaps you have ghsv1, and not ghsv2.

Culturing or PCRing (just made up a new word there) would help determine this as well.

AJ

[Confused_08]

Well I got the Herpeselct test which test for both.

[gracefromHHP]

I think Jess was referring to that  hsv1 doesn't always reflect on the blood tests.  the pcr swabbing will show any herpes if it's the cause of your symptoms be it hsv1 or hsv2.

grace

[Confused_08]

Hi Grace,

I just got my results back from the culture and they came back negative. I don't know what to do. Please understand I DON'T want to have herpes....... I have to put that out there because a lot of posters on here can be judgemental and think a person wants herpes if they have questions about their results. What do you think is going on here?? I don't know the name of the test that she used, I have to find out as soon as I get a hold of her. What is the gold standard of all herpes test? I have had herpes symptoms for 10 years now. GRACE HELP ME.

[gracefromHHP]

How long after your symptoms appeared did they do the culture?

Perhaps at this point a dermatologist is the next step then . When you have your symptoms - is your gyn testing you for yeast and bacterial infections too? has she examined your vaginal secretions under the microscope to see if there is anything on the cellular level going on?

I certainly understand not wanting to have herpes!! I also understand wanting to finally have some answers for once and for all too.  Ask for the derm consult and go from there.  Ask your gyn if she knows of any that have any special interest in genital issues  - sometimes you get lucky and can find one that does.

grace

[Confused_08]

Yes, my GYN tested me for yeast and bacterial infections. I got the culture maybe three days after I noticed the initial outbreak. And that was because I noticed it on Saturday so I had to wait until I could get an appointment the following week. Was that too late? But after I got the culture, more bumps arrised arrived the following day. So wouldn't she still get a good culture if I got bumps after the culture? Also I still have the sores around my panty line area, and it's going on two weeks. WHAT IS GOING ON. My doctor told me to call her so we can talk about this so I will definitely call her and see what we can do next. I want answers!!!!!!!!!!!! HELP ME SOMEBODY!!!!!!!!

[gracefromHHP]

There's really nothing else we can do. Sores in the panty line very well might not be herpes.  It can be a bacterial infection ( folliculitis ) ,  fungal infection, latex reaction etc.

Just continue to follow up to find out what is going on.

grace

[Confused_08]

Hi Grace,

I just talked to my doctor and she said the name of test was Herpes Culture Test. I thought that was pretty generic sounding. Have you heard of that test? She said she doesn't think I have herpes because my blood tests were negative. She also said she doesn't think I have follicultis because the bumps weren't around hair follicles. She thinks I have a mild case of a yeast infection. I told her that doesn't make sense because that means I would have had a yeast infection for 10 years. Then I looked up yeast infection online and I didn't see any references to bumps. I really wish there was a test called "Everything Test" so you can just test for everything out there. My doctor could hear that I was frustrated. When I get enough money I'm going to try that PCR swabbing thing you mentioned. Or do you think I should even bother........

[waringblender]

Okay, so then it sounds like maybe you can wrap it up on this forum, right? Time to move on. Really.

[Confused_08]

Also, do you know where I can do the PCR swabbing besides westover heights. I've been trying to skim through your messages and I think that is the only place you recommended.

[Confused_08]

Since you seem to know all your hepes answers, why don't you just wrap it up?