Tested positive for HSV2, what does the number mean?

[Wander45]

I had some issues recently after having unprotected sex that sent me to my doctor and to get STD tested.  My doctor said I did not visually appear to have an STD, although I did have a bacterial intection which she treated me for.  She also gave me an order for STD testing.  I received my lab results and I tested positive for HSV2.  After some serious freaking out and mad searching on the internet, I returned to my doctor to discuss 'what now' and to find out why the infection was not clearing.  My symptoms were a clear discharge, burning/tingling, several tiny white bumps and what I thought was a possible yeast and bladder infection at the same time.  My doctor and I had thought it may be HPV before I was tested, because of the tiny white bumps.  She was as shocked with the results as I was.  We talked about how I'd been STD specific tested last year and had not been sexually active for several months before and after being tested.  It was all negative.  She said it would seem that it would have been transmitted to me recently then.  I had the (Elisa) testing and I asked her what the likelihood was that I could retest and be negative.  She said it was not likely because the testing is so specific now.  She also mentioned that my number was very low.

HSV 2 Glycoprotein G = 1.23

Does this number mean anything?  Can you help me understand this number better?  I've looked everywhere and the sites I found any information on were vague.  Some suggest it could mean a recent transmission due to the low number.  Others suggest it does not mean anything.  My doctor was great and really talked with me about my options and gave me a lot of information, other than this, that are helping me adjust to this knowledge.  She prescribed Valtrex which I am taking daily now.

Thank you!          

[Tommie23]

If your not taking anything for  it how would it make you feel

[maybelle81]

Terri Warren suggests that true HSV2 positives "normally" fall below .2 (http://www.medhelp.org/posts/Herpes/Been-tested-5-timesmany-questions-remain/show/1680368) and that WB is needed to confirm anything above that AB count as being a true negative.

I don't understand... either Herpes exists or we can all just continue making up our own definitions of it...

[Wander45]

Thank you Grace.

You do an incredible service here.  Thank you all so much!!!

[gracefromHHP]

I totally agree with your plan at this point - no real reason to continue testing with this 2nd negative result following your initial low positive.  

congrats!!!


grace

[Wander45]

Hey,

Thanks!!  I just read your journal entry and we have similar stories of our 'mis'adventure.  

I'm not a definite negative on paper, however, as the Dr. also stated,  "some people are just going to test that way and it's not going to change; you're most likely still negative but it's enough of a roller coaster to drive one insane".  Okay, so those weren't his exact words, I gave it my own twist. : )  My original issues that sent me to the doctor in the first place are still persisting, never having gone away.  That is why I started to doubt it was herpes.  I have most all the same issues you did with back pain, fever, leg/buttocks pain, tingling, and bad headaches.  I've had increasing pelvic pain among other symptoms and so will be checking for ovarian and cervical cancer next.  

I can honestly say one thing about all this.  It derailed the way I was going about my life and woke me up to how I 'should be' living it.  I eat healthier, I exercise more, I'm not sexually active but you can bet I will be very careful when I am.  If a man only wants a casual relationship with me he's not going to be a part of my life... period.  

Best of luck to you and thanks for your support.  You have mine as well.  

[Mistakeguy789]

Woohoo!!!! *throws confetti on you*  Congrats!!!  

[Wander45]

Hi Grace,

It's been a while.  I just retested as you suggested I do and what I chose to do for myself; even though my Gyn said, "If you test positive, you're positive" period.  I retested with the ELISA again, not the WB as I had intended.    

My initial result: HSV 2 Glycoprotein G = 1.23 (positive)
                        Anitbody, IgG

Today's Result: HSV 2 Glycoprotein G = .94 (equivocal)
                       Antibody, IgG


So, not only did my result NOT go up, it went down.

I just read the comments from a Dr. here on MedHelp and he states that an equivocal 1.02 or lower is a false positive or a negative and nothing more.  So much for what my Gyn told me.  If I'd listened, I might not be where I am today.  I'm not going to test further.  I'm comfortable with these results and WILL be taking more precautions in the future!

Thanks for all you do here, it's truly an awesome site!      


                          

[gracefromHHP]

for a long time they weren't sending the testing kits to anyone but doctor's office. guess they changed their policies again.

grace

[Wander45]

Oh, per #9.  This is regarding testing other than Western Blot.  I was tested by ELISA and my insurance would cover my being tested by that method under a diagnostic code; unlimited times per year.

[Wander45]

Grace, thank you for all your feedback.  Mistakeguy789 too!

I contacted the phone number listed on the Westover Heights website and ordered the kit for the Western Blot.

Here's some information I found out today:

1.  They will send you a kit in discreet packaging free of charge; directly to your home.

2.  Since my positive is so low and for anyone really wanting a concrete answer one way or the other, they suggest you wait 3-4 months since exposure to test or retest.   This may give your body time to develop anitibodies if you're going to.  I was told some bodies are extremely efficient at fighting off infections and may show up sooner (possibly as in my case), but is best recommended to wait the 3-4 months.  

3.  You need a doctors order to accompany the returned test or they will not test it.

4.  No insurance outside of Washington will cover (pay for) the WB testing.  It's an out of pocket expense.

5.  You need to send a check or money order at the time you return the test, in the amount of $156.25. (call the number on the site to verify, although this was as of today).

6.  Some information I was given is that a large test was done on a group of 'low positive and questionable' from Belgium by using other testing.  When sent to the lab and testing performed using the WB,  a high number of both the low positives and the questionables were negative and remained negative with future testing.

7.  WB is either positive or negative.  It does not give a number value like some of the other tests.

8.  There ARE some questionables even using the WB.  Very few and far less than other methods of testing, but there are some.  Unfortunately, you don't get a refund of fees paid and it does not apply to future testing.

9.  Per PPO insurances; if you have tested and feel you need further confirmation, you can be retested under the same diagnosis as that used previously by your physician.  As long as they order the same exact test it will be covered by insurance as long as it is listed under a 'diagnostic' test and not a screening test.

I called my insurance company to verify coverage for the WB testing and the phone number for Westover Heights to order the kit.  Both told me it is an out of pocket expense.  I hope this information helps others that have some of the same questions I have had.  I will wait the 3-4 months to be tested again.  I will come back and share that information either way.

Best to all.
  

[Mistakeguy789]

me too!  Grace is wonderful.  I don't think I could ask for anyone better at things.  I told her when she would respond to my questions that if she ran for president she would get my vote!

[Wander45]

Yes, I absolutely agree with you.  In an ever growing 'lack' of personable customer /patient care, some of us are ignoring the rule and being the exception.  It's all a choice.  

I kinda like Grace's spunk!! ; ^ }

[Mistakeguy789]

Yes I know how you feel about not feeling cared for.  One of the things I learned professionally (I work in as a System Admin but before was in Technical Support for a large Bank supporting employees) was you listen to the person describ their problem.  I may know what it is with the first 2 sentances but it helps for me to listen and then when done restate what I heard in my own words/their words and then troubleshoot that way.  I was surprised at how many customers enjoy that.  It does make them feel supported and cared for. They aren't another number to you.  One of the things I think that every business (I run a business on the side as well) that needs to take note in is to listen to their customer.  If I deal with a business that doesn't listen to me I find someone who will.  If it costs more guess what I will pay for that level of customer service/respect.  

Now grace you better watch that PMS and blue face going on.  Remember breath!!! LOL :-)

[Wander45]

LOL

I did check out that site today and read over that information.  I will purchase the booklet and would be all to happy to hand it over should I test negative.  

Worse case scenario, I still test positive and may hand it over anyway. ;-}

[gracefromHHP]

http://www.ashastdwebstore.org/herpes-testing-toolkit.html  is a terrific booklet for under $3 that has all the info on herpes blood testing a clinic needs. Might be worth purchasing it and handing it to the doctor , esp.  if it turns out you test negative.  Perhaps it's my pms talking....lol.

grace

[Wander45]

You know... it really is an impatient world we live in and some people think they have all the right answers.   I include myself in the 'lack of patience' sometimes too.  For the most part, I try to listen to what is being said and figure out what the main concern is.  When I figure it out, I ask the patient if I'm understanding their questions or concern correctly and address it from there.  I found this is the most productive approach to making everyone happy and feel cared for.

That's why I was so angry with the way I was treated.  They obviously didn't care what my concern was, only that I was taking up more time than I was allotted and how dare I question the doctor.  It's called a second opinion for a reason.

Glad you got your business squared away. : }  

[Mistakeguy789]

Sounds like a bad Dr office to me.  I had a few doctors like that before.  I walked in for an appointment and told the doctor how their office staff treated me and told the doctor he was fired and I would take my business elsewhere.  

Doctors are dime a donzen in some places so its easy to find another one.  Wish I knew a good one in CA.  I know them in Houston, Tx and have one I always recommend for people out there.  The doctor there when I was in the hospital told the hospitial he didn't want a specialist on my case anymore after he got rude and told me I was an idiot.  My PCP was an attending at the hospitial too and had privledges there.  His face after I told him was so red and when that expert came in he went off on how he was to NEVER handle his paitents like that and he didn't want to see him with any of his practices patients.  I am glad it was my PCP that said it and not my PCP's dad who is also a doctor.  

[Wander45]

I'm in absolute agreement with you.  I've been in healthcare for 15 years and know everything is not as it seems or 100%.  

Unfortunately, I may change doctor offices following this.  When I became assertive in asking for further testing the office staff became short, rude and treated me like I was someone or a situation to be 'handled'.  I'm very angry and not sure I can return when the staff is so insensitive to patients recently diagnosed with a lifetime virus and only requesting further testing.

They acted like I was insulting in requesting a retest with the WB because my doctor specifically said it was not FDA approved and would not order it.    

[gracefromHHP]

Most insurances will cover the WB.

definitely it's well worth additional testing for you. only about 20% of folks with results in that range are really positive.  

I was at a conference 2 years ago where the herpes info the "expert" gave was so blatantly wrong I think I turned blue at one point from trying to keep my mouth shut!  Wrote a detailed paper as to what info was wrong and presented it to the "expert" the next morning. He was shocked that I told him everything I did and promised to look at my references and change his talk if need be. Saddest part is, he's the head of his department at a major teaching hospital so you know for years he's been teaching the wrong info to doctors in training too...sigh.  At least he seemed open to my suggestions and hopefully he's since updated his info.  

The low positive issues unfortunately aren't as well known as they need to be.  The www.herpeselect.com website has info for providers and they typically have good folks to refer them to about the blood tests and its drawbacks.  

grace

[Wander45]

Thank you, Grace.

I will check with my primary care doctor and see if she will order the WB.  I now know my GYN will not order it since her staff told me she attended a recent seminar on STD's with the 'gold' standard of testing being the ELISA; and I should 'not' go with any other at this time.  Nothing is 100% and with such a low positive, now that I've had time to think about it, she should have recommended I get retested instead of saying, if you're positive on that test, you're positive.

Is the WB typically covered by insurance if it's still considered experiemental at this time?

I need to be retested for my own peace of mind and if I am still positive at that time, then... I will accept and deal with it.  When I have even a glimmer of hope that I could actually be negative, I'd rather make the effort and explore all my options.

Thank you for your encouragement.

[gracefromHHP]

no the WB is not FDA approved. it is considered the gold standard in herpes testing and most research studies use the WB as their method of confirming herpes even with other blood tests.

At this point the best you can do is see a different provider who will order the WB for you. it's not a blood test you can order up on your own.  Encourage your provider to contact the fine folks at focus diagnostics to get up to date info on the low positives and why additional confirmatory testing is needed. they will gladly talk to your provider and give her an update/teaching.

grace

[Wander45]

Hi Grace,

I talked with my doctor's office today and was told she will not order the WB as it's still experimental at this time.  She states the only FDA approved testing is the ELISA and it's nearly 100% accurate; so if I tested positive with that, I'm positive.  I still want to have the WB, but apparently I won't be getting an order for the testing through my doctor.  Is there a way for me to have this done on my own, inexpensive?

[gracefromHHP]

most people never get tested for std's, of those who do, typically they are only getting tested for 2 of 3 of them when they ask for them. Just taking someone's word that they get tested regularly is always a gamble to be honest.

grace

[Wander45]

I know what you mean.

My doctor had told me the same thing about the bad cycle between the two.  She  asked me not to hesitate to come back if things don't go away or they return.            I won't.  

I'd like to think and say I take care of my body, however...  I can't quite say that when I'm not using protection and only taking someone's word that they're clean.  Somehow, we seem to throw caution to the wind there.

Thank you Grace.