Whom to believe re: blood tests and prevention

[quietguy]

Doc, I recently took a HerpeSelect test even though I have never had any symptoms.  I took this test just b/c someone had spit on me, and I worried that you could get diseases that way--I knew very little about any std's or herpes.  Anyhow, all tests were negative, but the HSV test came back positive for HSV I (no surprise) and HSV 2 (5H on the antibody scale) which shocked me a great deal.  Around that time I posted a question to the dermatologist because I did develop a chaffed spot on my penis--however, I believe I caused that injury myself by looking, poking, prodding.  Anyway, still worried, I went to see my doctor and then, after, a recommended dermatologist.  Both looked at my sore and said "no way," due to its duration (long), appearance, and much more.  I said "but doesn't herpes have all kinds of possible appearances," and both docs separately said "yes, but what you have fits none of them."  Okay, I believe them.  However, both docs ALSO said "The serology test doesn't mean much--it simply shows past exposure. Maybe you have an active infection, maybe inactive, maybe neither. Maybe you had it once, orally, and never will again.  Maybe you came across some of the virus, but your body handled it, and you will never need to worry about it.  Since you haven't had any manifestation of the virus so far, don't worry about it."
This advice is very different from what I see online.  HerpesDiagnosis.com says that positive serology means "you have genital herpes."  My docs aren't anywhere near as certain.  
This matters to me so much b/c I am married, and I love my wife, and of course, I do not want to infect her (assuming that she is seronegative.)  
I said this to both docs, and asked about Valtrex, and both docs put me off, saying "you are going way overboard here."  
Am I?  What should I believe?  Could I have a false positive?  
And/or, could both me and my wife be asymptomatic, or nearly so?  We have been together, faithfully, for 6 years.  
I am incredibly depressed about this--my quality of life is dramatically suffering.  Please help.  
Sorry for the excessive inquiry.

[H. Hunter Handsfield, M.D.]

I'll try to help.  Maybe my information will be reassuring in that you'll recognize the truth of it; but the facts themselves aren't the ones you are hoping to hear.

Whom to believe?  If it were cancer and you got conflicting information about diagnosis and treatment, would you believe the GP or the cancer specialist?  Perhaps I'm biased, but I think you should believe the herpes/STD specialists, who undoubtedly contributed to the info at HerpesDiagnosis.com; or me. Genital herpes and HSV infections are complex issues and many providers simply are not up to speed on them.  From your description, this incluces one or both of the physicians you have seen.

Blood test interpretation:  I'm not familiar with the precise terminology you use for your HSV-2 result ("5H on the antibody scale").  Since it was the HerpeSelect test, my guess is means ELISA ratio 5 (5.0?), with "H" meaning "high".  So it seems indeed a positive result.  Don't feel like the Lone Ranger:  the same outcome is expected in 25% of the population, most of whom have no clear symptoms of herpes--so you are quite typical in this regard.

Your doctors are just flat-out wrong in their advice about what the test result means.  It is simply wrong to say the result shows past exposure without active infection.  Virtually everybody with antibody to HSV-2 has an active infection, almost always genital and not oral, whether or not they have symptoms.  You do have to "worry about it"--that is, be on the lookout for lesions (more info below) and inform and take steps to protect future sex partners.  However, if you are an older man--of an age that you might have been infected for more than 10 years, and perhaps especially if you're in your 50s or higher--you might have little asymptomatic shedding of the virus at this time.

As to the "chafing" on your penis, I can only speculate.  Rubbing and prodding in the way you describe is unlikely to be the cause, unless you were extremely vigorous at it (for example, you actually caused bleeding).  (Why were you poking and prodding anyway, unless you had a lesion that you were concerned about before it was rubbed?) I don't know what you mean by its "long duration".  If a few days, it certainly could be herpes; if more than 2 weeks, probably not.  The appearance alone doesn't help much; many genital herpes lesions are quite atypical compared with the classical appearance.  On the other hand, a dermatologist normally would know this, so his/her opinion is a little reassuring--but only slightly, because a dermatologist really ought to be up to speed on the HSV-2 blood tests and how to interpret them.  If the lesion heals up then recurs in the future, especially if in more or less the same spot, that would be strong evidence in favor of herpes.  If/when that happens, see a provider within 24-48 hours for examination when the lesion is fresh and for a viral culture.

Could both you and your wife be asymptomatic after 6 years?  Absolutely yes.  Is she infected or susceptible?  Don't know, but you can easily find out and should do so.  Because she is the regular partner of an HSV-2-infected person, there is at least at 50% chance she already is infected.  You need to find out--i.e., she needs a HerpeSelect HSV-2 test.  If she is positive, the worst has happened and it isn't so bad:  you're both infected, can't reinfect each other again, don't need to take any precautions, and don't need to worry about ever having a serious outcome.  In that event, your docs' "don't worry about it" advice will be exactly right.  (If she is positive, by the way, you will never know which of you was infected first--i.e., which of you caught it from whom.  But it won't matter.)

If your wife's HSV-2 test is negative, you will need to decide how important it is to you and her to avoid transmitting infection to her.  Lots of couples will decide it's no big deal and not take major precautions.  So I don't repeat myself, see my reply on exactly this issue to "inoregon99" in yesterday's thread "Questions about herpes transmission". (With one difference:  if she is pregnant, or becomes pregnant and hasn't yet been infected, you need to be extremely careful she doesn't become infected during the last 3 months before she delivers.)

Regardless of whether or not your wife is infected, it is probable that no other partners are involved.  You don't say anything about this, but from the overall tone of your question, I assume you and your wife have been mutually faithful since you married her.  Either or both of you could have been infected by some other partner long ago.

So have a direct but loving conversation with your wife.  Don't trivialize it, but don't make such a big deal of it either.  If my assumption about your sexual risk is accurate, it really isn't all that big a deal, regardless of your initial reaction and fears.  Don't go starting Valtrex until she gets tested and you decide on your next steps together.

And feel free to print out this response and send it to both your doctors, with my good wishes.  Don't blame them too much for being behind the 8-ball on herpes; most docs are.

Best wishes--  HHH, MD

[quietguy]

Doc--the sore spot lasted 1.5 months.  More than one doc took a look and said "no way."....

And my wife is not likely to take a test--she doesn't want to talk about it or deal with it. I tried.  She's a no symptom, no worry kind of person.  So, I figure that if I take VAltrex, she is unlikely to ever have to deal with the problem.  (3-4%, monogamous, no sex during outbreaks, if I have any).  

Should I retest though?  To be sure?  

And isn't it possible to say, be exposed orally, develop antibodies, but never manifest the infection?

[ryn21]

A bit of reassuring news is that in some cases, as I have read, some people's immune systems are so strong, over a period of years without outbreaks, the disease can kill itself off.  I have read of cases like this on the net.  It takes years to kill off completely but it does happen.  I also read that many people may be carriers and never get an outbreak, only shedding the virus.  Thats why most people dont realize they have it until being tested for it.  

[gracefromHHP]

Studies have shown that over 90% of those infected with hsv2 don't know they have the virus.  Everyone assumes that if you were infected with it you'd know it instantly and be plagued with frequent, painful, blister-like sores.  The reality of infection is that it's more common not to have frequent symptoms than it is to have them and for them to be so vague as to go unnoticed or certainly never attributed to herpes.  Studies have found that even if you don't think you've ever noticed a herpes lesion you are still shedding the virus at the same rate that someone who gets the average number of lesions a year ( 4 to 6 ) is especially during the first several years of infection.  As HH already pointed out - there is no such thing as just being "exposed" the virus - your test results of 5 mean that you are well out of the potential false positive range and you should assume you have hsv2 genitally.  If you feel the need to retest then do so but it's not likely to give you any different answers.

Your symptoms lasting 1 1/2 months would be unusual for herpes even if this was a brand new infection for you ( the first one tends to stick around the longest ) but I know that even in myself I"ve occasionally had reoccurances that last up to a month even with suppressive therapy.  Secondary infection with bacteria doesn't happen a lot thank goodness but perhaps this is the case even.  I"m assuming your lesion is finally healed and gone?  Did the derm doc offer any treatment suggestions?

Hsv2 doesn't "like" the oral area to greatly simplify it.  You are far more likely to have the infection genitally than you do orally.  The few folks I've come across on the boards with confirmed hsv2 oral infections were very ill at the time of their infection and knew they had contracted something.  It's also been pointed out in the past that most folks who have hsv2 orally are also infected with the virus genitally. It doesn't often reoccur orally and it doesn't shed very often so the genital hsv2 infection would be the most likely to be transmitted to a partner.

The herpes handbook at www.westoverheights.com is an excellent ( and free ) resource to learn more about herpes.  It's well worth the 40+ pages of ink to print out and encourage your wife to read ( and you too of course ). If you two ever plan on having children together her knowing her status and the two of you taking precautions to reduce her chances of infection are in her best interest.  Trying to pretend that herpes is not in her life isn't going to give either of you answers or peace of mind.  Why worry that every little ache/tingle/itch/red area on your penis is a herpes ob if she already has the virus and transmission isn't an issue for the two of you?  Why pay for antivirals to protect her if she already has the virus?  Encourage her to get a blood test to know her status so the two of you can make informed choices about how to handle herpes in your relationship.

If your current doctor is not up to date enough on herpes and reduction in transmission then look for one who is.  If you chose to treat your hsv2 suppressively to lower the risk to your wife that is your choice - not theirs!!  I'm sure if the shoe were on the other foot they'd be taking antivirals suppressively!  There is a list of "herpes aware" doctor's on the westoverheights website to see if there are any near you.  There is also a doctor's list on the herpes homepage at www.racoon.com/herpes.  No guarantees with them but hopefully they should be a little more up to date on herpes than the 2 doctor's you've come across so far.

grace

[quietguy]

Grace
Thanks, and I understand, but my wife does not want to talk about it.  She won't get tested--and she doesn't want me to bring it up again.  That is why I feel so trapped in my position--I'd do anything to keep her safe, but I also don't want to continue making her unhappy.  By her, and separately by my family, I am viewed as being obsessed about this.  I can't even get over my own infection--I am still shocked--and yet I spend hour worrying about how it would or could pan out for her.  I really do not know wht to do.

[H. Hunter Handsfield, M.D.]

Good advice from Grace.

Too bad your wife isn't interested in contributing to solving your stress.  On the other hand, her attitude toward herpes may be the more healthy one; if she simply feels genital herpes simply isn't a big deal, especially if asymptomatic, that's OK and is a legitimate perspective.  If so, why are you so concerned about infecting her?  The silver lining around the dilemmas posed by asymptomatic shedding, with risk of transmission without a recognized outbreak, is that if your wife gets infected, the odds are she will never know it, or will have only trivial symptoms.  Or if she develops painful or otherwise significant symptoms, effective treatment is available.

All of which has one exception, but it may be a huge one, depending on your family plans:  If your wife happens to be pregnant, or if you anticipate having kids in the future, she MUST learn her HSV-2 status sometime before the middle of pregnancy; or the two of you must commit to having no genital intercourse during the last 3 months of pregnancy.  Neonatal herpes often is fatal and many survivors having lifelong neurodevelopmental disabilities; and by far the biggest risk is when the mother first acquires genital HSV infection toward the end of pregnancy.

HHH, MD