Questions on testing (and some emotional advice)

[UberConfused09]

So my question mostly deals with testing information and a re-confirmation.

I had symptoms consistent with a genital herpes outbreak around my lower abdominal area, just barely reach to my genitals. After trying to "self medicate" by popping the blisters and using hydrocortisone cream (I know, stupid) for about a week thinking it must've been a pimple or ingrown hair, I mustered up the courage and went to a walk-in clinic to get tested.
First doctor I saw made a preliminary visual diagnosis of herpes simplex. The test was a combined Herpes 1&2 IgG (1.56) test, and a combined Herpes 1&2 IgM (1.53) test (I now know both are flawed, and basically useless). The culture taken came back positive for herpes simplex. I know I must have some kind of herpes, given that a culture is as near to 100% as any test can be. The 2nd doctor that read the results to me had an almost non-chalant attitude toward the results, stating: "This just shows you had a possible exposure to the virus in the past. You're fine. Have a great day." I left there both baffled and relieved, thinking "okay, so I had something down there but now I'm fine?"

So, after two months now of swinging wildly between a false confidence/blind denial, and having a significantly milder 2nd outbreak in the past week,I know I need to go back and get the appropriate and accurate tests run. As difficult as it is for me to summon up the courage and get a positive confirmation on what kind of herpes, I know I need to.

So, my questions:

1. I know I need a type specific IgG test, always. I've read its best to wait 3-4 months before being retested for a more positive confirmation. Its been about 3 months since I had the first possible exposure and symptoms, and the flawed combined test. Is now an appropriate time to get retested?

2. I've also read that anything below something like 2.5 is considered a low positive and requires retesting. Is there any truth to this even though the test results say 1.1 or greater is a positive?

3. I've read some confusing material about the pro's and con's of anti-viral drugs reducing the frequency of long term outbreaks over the years based on how close their taken to the initial outbreak. Some places say it reduces it, other places say the initial immunity build-up response is better. I was never prescribed anything, so I'm wondering if there's any information on that.

On the emotional side...
I've been able to live with that first outbreak, and the subsequent one that started and went away about a week ago was incredibly minor. It is a surprisingly tolerable, if not annoying, disease. I obviously don't advocate anyone that doesn't have it to catch it, just stating the symptoms are neither life threatening nor intolerable.
But the emotional impact... my God. I have been a complete wreck, though strong enough to keep it together in public. I haven't been able to confide in anyone, feel like I have to keep it a deep secret, and feel like I'm living a lie and have to suffer alone because of it. I used to be extremely grateful for my health and vitality and feel like that's been forever marked. I've read the 1 in 5 statistic, and now wonder when I'm out in public who else has it. I feel like the control I once had over my life has been ripped away. The idea of having to tell a future partner about this terrifies me beyond belief, but the thought that I might spread it to them is horrifying. I feel like a leper of the 21st century.

So, any advice from people who have herpes how to get past this initial stage of what feels like I'm grieving for myself? Should I pick someone I trust (such as my sister) and confide in them to possibly help clear my soul? Any advice on how to get out of this self-imposed pity party would be great. Thanks.

[gracefromHHP]

Both tstd and healthcheck contract out with area labs to offer the testing. They typically use quest labs which only offer the herpeselect. sometimes they do contract out with labcorp if there isn't a quest nearby which in that case it's the captia test. Both are fine tests as long as you've waited several months to get testing done after the last time you had sex.

tstd typically you can get the blood drawn much sooner than you can healthcheck too.  I can help you with the results no matter which one you use so don't pay extra for the interpretation of them.

grace

[UberConfused09]

Very true. I'm not crazy, the world is! Or as I like to say, "It's no sign of mental health to be well adjusted to a crazy world." So if I act sane just like everyone else, I'm clearly insane. But by acting crazy, I'm practicing my sanity on a daily basis. (Japanese zen flute sound goes here).

So after checking both websites and local clinics, I'm going with the web option.

Now tSTD shows an option for the "Herpes Simplex Virus 1 and 2 lgG, Type Specific Antibody" test. Even though it doesn't tell me the exact name of the test I'm guessing it will suffice. ($98)
Healthcheckusa.com, however, does clearly say it offers a HerpesSelect test which I remember reading about somewhere here on medhelp.org as being a reliable test. ($109).
The price difference between tSTD's test and Healthcheckusa's HerpesSelect is $11. I'm willing to spring for the extra $11 if the HerpesSelect test is a much better test than a generic IgG.

My question(s): So, is it? Or is HerpesSelect the basic IgG test for hsv 1/2 and tSTD doesn't bother listing it by name? Does the name not matter? Is this all addressed in another thread I didn't bother to search for? ;-)

Thanks!

[gracefromHHP]

see I knew you were the crazy one, not me ( and I tell myself that everyday - the other people are the crazy ones , not me )!  I answered as if you were female as you have now figured out!

http://www.medhelp.org/user_journals/show/8280?personal_page_id=2773  this is a prior journal entry I made that might also help you with the how to treat questions too.

grace

[UberConfused09]

Well in addition to all the testing advice you've given me, I have to thank you for correcting me on my inaccurately gendered icon. Mea culpa!

As far as 7 out of the 8 HHV's, that's still 88%! A passing grade on any test, I assure you! So don't beat yourself up about it. Try what I do when I need to get my mind off things... watch sumo wrestling videos on youtube. =P

Okay, back to the serious side of things...

One other reason I was thinking of retesting at a clinic would be to speak with a doctor about the treatment, i.e. episodic vs. suppressive, etc. But from checking out those links, I think I can get a lot of information from those sites to help formulate my own decisions. Think that's a safe bet?

[gracefromHHP]

so you are male? you have a female icon.


why the concerns over all 8 human  herpes viruses? I have 7 out of 8 myself. I assume I don't have the  kaposi's sarcoma one and I'm ok with not having a perfect score on the HHV test :)

grace

[UberConfused09]

Again, my eternal thanks. I'll look into the online testing places, and see if I can locate a draw station in my area, and take the appropriate steps from there. Again, my thanks. I think once the initial shock of "herpes!" wears off, part of the mental anguish comes from focusing on "what did I do..." to "what do I do now..." and this board and your replies have been instrumental in helping me with that. I'll post again when I have the results back (or before then if I need further clarification on testing.).

One final thing: if I go to a clinic and the doctor suggests a pap smear, then my concerns over HSV-1, HSV-2, Varicella zoster virus, Epstein-Barr virus, Cytomegalovirus, Roseolavirus, et al are suddenly moot. Now the problem would be to ask the doctor, "What form of secret government genetically engineered herpes virus do I have that caused a total sex change and lead me to grow a uterus!?" I think I would want science to name it HHV-WTF!? Type 1 in my honor.

And HHV-WTF!? Type 2 would be for the opposite gender. Symptoms include: sudden love of contact sports, failure to listen attentively, and asking "Why do we need pillows we don't use on the bed, to match the towels we don't use in the bathroom?"

[gracefromHHP]

I am sitting here laughing like crazy about your comments about if only you had this devotion to your studies....lol.  

So if you ever date a sumo wrestler with herpes gladiatorum you are set right? he he he

For about $100 you can order a type specific herpes igg blood test thru either www.tstd.org or www.healthcheckusa.com. I can help you with the results thru both.  If it's time for your annual pap and such then by all means see if your local planned parenthood offers the blood test for you and pay for the visit and any testing they do but if you just had that all done back in May I think it was all this started for you, then it might be cheaper just to get the blood test done thru either of the 2 online reliable sources I listed. Some health departments/std clinics just have draw stations where you can call and just order up testing without an appointment which saves you the office visit fee. Call around and find out. Make that your new project this week if you can tear yourself away from reading studies on mice and herpes or sex workers in singapore and herpes or whatever your herpes topic du jour is this week :)   Also not all planned parenthoods offer type specific testing so be sure to call first before you pay for a visit to one.  

The herpes homepage will always be near and dear to my heart. Auntjessie from here post there and I do too ( I'm grace over there hence my gracefromhhp nickname here ).  The support folder is filled with mostly terrific people with herpes who are caring and knowledgeable and just plain ole nice :)   it's better suited to long term support than this forum is. This one is more short term and education than actual living with herpes and dealing with it day to day.    You can also check out www.ashastd.org under their herpes section to see if there is a herpes support group near you.  

Just keep taking baby steps about all of this :)

grace

[UberConfused09]

Grace, thanks for your reply/advice. I'm sure you can understand the shock impact of the diagnosis; in my case it took about two months of either denial or positive thinking (not sure what to categorize it as just yet!) before the wall finally cracked and led me back to the boards here to seek out advice on getting retested with an accurate test. I can't begin to tell you the countless hours I spent looking up every possible misdiagnosis and statistically improbable way of auto-innoculation of HSV-1 known to humankind (no joke, it even included cases of Herpes Gladiatorum spreading through Sumo dojo's in Japan! I mean I wish I had this kind of dedication to some of my college research! ;)   http://blogs.discovermagazine.com/discoblog/2008/09/30/%E2%80%9Dmat-herpes%E2%80%9D-hits-sumo-wrestlers-with-full-force/) But, I digress. I'm sure this is not unusual behavior among people in my situation, both in the past, in the present, and hopefully only in the near future.

So my next few questions
1. I'm thinking of going to a place like Planned Parenthood, where the dr.'s might be more knowledgeable about this matter than those at the general walk-in clinic (and, like many Americans, I have no health insurance). Would that make a difference?
2. I'm probably going to take my previous test results along with me to kind of drive home the point that I need an IgG specific test; I think there was much confusion at the last clinic over the kind of test the Dr. ordered. Good idea, you think?
3. Any really good herpes support websites you would recommend in addition to this one? Maybe more along the lines of the mental/support side of things? I think it would definitely help to find other people who have this condition, and due to the immense social stigma and it being such a "quiet" issue, I doubt I would find a face to face place to go in a small town like mine. And if I do, I'm not sure I'm ready just yet to "go public."

Thanks again, and I'll keep posting... so far, its about all I've got.

Again Grace, you're support is an immense help. You're a Saint!

[gracefromHHP]

1 - yes you can get a type specific herpes igg blood test now to see what your status is. odds are you've seroconverted by now.

2 - it's an issue we talk about all the time here on the boards.  You've had a + lesion culture so if your hsv1 igg is 4.6 and your hsv2 igg is 2.5 - odds are you really do have hsv2 so in a case like that, probably not even worth retesting after that point. once you have your results we can better help of course.  

3- you never, ever have to treat your ob's if you don't want to. No decrease in ob's long term by doing so. also at the same, no reason not to treat them if you want to. the body doesn't build up a better response to the virus if you don't. herpes antivirals work by disrupting the viral replication process when it's active, the body still always has to do its part to help too regardless of if you take antivirals or not.

If you can afford to do so, I recommend picking up Terri Warren's new book " the good news about the bad news" . it goes into far more detail than the free handbook she wrote does and I think it's just awesome. It spends a lot of time on the psychological side of finding out you have herpes too.

So how do you overcome the feelings you are having?  well I'm a fan of the Nike slogan - just do it.  Start with your sister if you have a close relationship or a bestest friend.  Get it out!  I'm sure they've noticed that there's something bringing you down for the last couple of months so share it with them and let them do the sisterly/girlfriend thing - food and shopping!  Have someone that you can turn to for support.  I think it really helps a lot to have someone to trust with things like this.  and it is scary to think about having to have to bring this up with future partners but you'll probably find that most of the time it's not an issue for folks.  It's really a "talk" we should all be having anyways with potential sex partners - this just gives you a good reason to remember to do so.

hang in there and keep posting :)

grace