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Conflicting herpes test results, and I have no idea what to do


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Let me preface this by saying that I have a history of anxiety and depression, so I'm sure that is just adding fuel to the fire of what I'm going through. I guess I can just get right into my 'timeline' of what's been going on. I was dating a girl over the summer and after a few protected encounters, we had the 'you're clean right?' 'ok so am I talk' and proceeded to have unprotected sex.

 

The later part of the second week of August, I had painful urination, tingling, and then a group of blisters appear on 8/11. No other symptoms of fever, aching swollen lymph nodes, etc. That day I go to Urgent Care and had a type specific IGG blood test done. I kind of knew to take the results witha grain of salt since it might take a while for antibodies to build up. The doctor also said she wasn't convinced it was herpes.

Results-

Type 1- 1.74 index value- positive

Type 2- 0.09 index value- negative

 

August 12- I go back to Urgent Care to have culture swabs taken of the same lesions (I, know not ideal bc not 48 hours recent)- results were negative for HSV-2, but positive for type 1. My girlfriend at the time's IGG tests come back negative for both.

She breaks up with me for other reasons she says, too much too soon or something).

 

The following months were ok, since I didn't have an recurrences, or so I think. Except for minor tingling and itching, with coupled with my anxiety, could very well have been 50% psychosomatic. It was out of my head, but I was under that assumption that I have genital HSV-1.

 

Fast forward to now, and I've been dating an amazing new girl. We've been seeing each other for a few months, I gave full disclosure about my medical condition, and she supportive and understanding.

 

November 19th- two small bumps/red spots that were never really lesions appear, prodome occured night prior. Take avacyclovir (for 10 days or sp) and those heal. Hit rock bottom thinking that it was HSV-2 bc that is more prevelant to come back, had to tell my current girlfriend what was going on bc I was an anxious wreck, etc.

 

November 22nd I go to my doctor- had another Igg blood test taken, results came back and I have no idea how they could be real.

Type 1- 0.19 index value- negative

Type 2- 0.09 index value- negative

 

Day after Thanksgiving I go see my Dr to examine what I thought to be another visual outbreak, she said it wasn't, and provided daily Valavyclovir as a daily suppresent/mind easer.

 

Two days ago, a small red bump appeared on my bottom lip that is now gone, so I rushed to the the doctor's again to confirm I didn't transfer or have herpes orally. Upon visual examination, the Dr and I talking about my test results up until now, told me it doesn't look like herpes and that I should lay to rest the fear that I have HSV-2.

 

Then later that night and the next morning, I worry about having herpetic whitlow bc I have a cut from skateboarding and some small weird rash on my wrists. THEN this morning I notice two small red bumps on my penis and have another complete freakout, but they are by no means lesions. I don't know what to do and am a wreck for the following reasons

 

1. I've had three tests that conflict, and three visual examinations telling me that whaever is going on at the time doesn't look like herpes. What can I do to know for sure what's going on?

 

2. Maybe the most important one. I don't want to scare or push away the girl that I am dating by being this nervous wreck and having to repeatedly tell her that we shouldn't have intercourse bc I fear that an OB could be happening. I feel like this is way too much for her to deal with this early on in our relationship.

 

I'm really sorry for this being so long, but I have used mom and sister so much as a support group I'm sure I have tired them out. I'm also seeing a therapist to deal with this and am taking antidepressants.

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Ovechkin8:

 

First - Welcome. I'm so glad you found us (and it sounds like your Mom and Sister may be too ..LOL! BUT it's great that you confided in them rather than trying to navigate it on your own. So many try to hide this from everyone and it makes it so much harder to walk through it when you are isolated.

 

Certainly your depression and anxiety won't be helping your situation. Perhaps Herpes is in your life to help you to learn coping skills. Learning to BREATHE, to stop the racing thoughts and the auto-upset knowing they are just a reaction and not truth, and learning how to find ways to keep the anxiety under control are tools that will come in handy throughout your life..... herpes can be the thing you learn to practice these skills on.

 

Just because you have had several outbreaks doesn't mean its HSV2 - I'm guessing the stress you are putting yourself under is just making it easy for the HSV1 to break through... some people have one event and never have another, others will have them for upwards of a year on and off before their system manages to get it under control. Worrying and staying stressed out about it won't be helping you at all.

 

I'm hoping @dr_h_positive (a new member here who is a med student but who definitely understands how this virus works better than we do already!) will chime in. But my GUESS (as a non-medical person) is that you have HSV1. I have no idea why you are getting such different numbers except that I do know they will vary depending on how well your body is fighting the virus.

 

There is a more accurate test called the PCR blood test. It tests for the DNA of the virus rather than looking for your antibodies and is supposedly much more accurate. Perhaps you can get your Dr or clinic to get that one for you.

 

Regarding your GF - first, what a wonderful thing that she accepts you as you are, H and all! And yes, I'm glad you found us so you can try to gain an understanding so you can move forward. One thing I will tell you as a woman... if a guy put MY health over his sex drive, I'd be singing from the rooftops! Not that I don't love sex, but I'd appreciate his honesty and concern for me and that would make me fall further in love with him...not the opposite way around :)

 

So - here's the deal. This is the perfect time for you guys to learn alternative ways to be intimate with each other. Herpes can actually give you the perfect excuse to create an even deeper love and understanding of each other. Usually at the beginning of a relationship we go at it like rabbits and it isn't until later (if you are lucky) that you start to look for other ways to pleasure each other. AND, you are getting to KNOW each other better for all this.

 

This is a great blog that Adrial wrote about exactly this subject - I think it will help you see what we mean about the Herpes Opportunity :)

 

http://herpeslife.com/keeping-your-partner-herpes-free-can-be-super-sexy/

 

Keep us posted and ask all the questions you want. We are here for you :)

 

Peace :)

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Ovechkin8, Welcome! Nice to meet you!

My own test results have been completely unreliable. My OBs are so textbook in appearance, occurance, and progress, that my Dr said she didn't care about a "supposedly" negative lab, she was dianosing me with H, and even went so far as to say it was most likely Type 2. She and I have since talked about everything from immune response to the actual metabollic process of the two main drugs and how those could possibly impact the test results in some people. Like WCSDancer, I hope we have some medical students or physicians on here to share. For me, I've had to accept for now, a large part of what is the reality of life with H and move forward. It's the only way I can stay sane. SO many people on here have share about their own funky test results lately. My OB/GYN even said that in some circles there is talk of a mutation to the virus that is changing the way we experience symptoms. We may never know unless and until proper research is done.

 

What stands out the most to me in your discussion here is this...

I recognize it because this is how I used to talk. You said, "I'm really sorry for this being so long, but I have used mom and sister so much as a support group I'm sure I have tired them out. I'm also seeing a therapist to deal with this and am taking antidepressants."

 

You may want to take a chance on believing that in fact you ARE valuable, JUST as you are, and you don't really bother anyone, ESP here! When you share, it's not just you receiving, it's you giving. You give of yourself, your experiences, your trust. We all benefit and are blessed by yet another person becoming a new friend on this H journey, so take a chance on not apologizing. Even if you do meet someone who isn't interested or who makes you feel bad in some way, you'll meet twenty more who are THRILLED for you to open up and share on here...you just need to risk keeping your eyes up off the floor so that you can see us!

 

Your girl is very lucky, as are you! Bring positive energy to the table and see what wonderful things happen inside of you!

 

Glad you are here, new friend!

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thanks so much for the replies here. Since I posted yesterday afternoon, both small spots/redness areas have essentially healed and cleared. I'm also no longer ruminating about having HSV-1 on my lip or herpetic whitlow, so I've got that going for me.

 

Having three negative tests and nurses/doctors tell me to stop worrying about having HSV-2, I'm doing my best to convince myself of this and manage any future hsv-1 outbreaks as well as possible.

 

Taking suppressive valacyclovir, being open with my girlfriend (we talked again last night and like before, she was supportive. Obviously, we refrained from intercourse) and family, and seeing a new counselor for the second time tomorrow to attempt to get to this all under control is all I can do for now I suppose.

 

Seriously, thanks again so much for the support. I'm going to spend the rest of the day building a bicycle for my girlfriend for Christmas :)

 

EDIT- damn, I haven't had to compose paragraphs of this length since college. Oh my how my writing skills have declined.

 

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Ovechkin8,

 

Welcome here and much love to you! I think that exactly all of us can relate to the feelings of anxiety and overwhelmed-ness that you described in your first post, and to echo the wonderfully articulate @Aerial2013, that is so understandable and nothing to apologize for. You are really wise to use the support systems you have available (your mom, sister, and girlfriend all sound amazing and it's so good that you can be open with them!), to seek out more support here, and to focus on the actionable things (like taking valacyclovir, doing counseling, and building that bike!) instead of the nebulous worries.

 

I know how frustrating it is to be sick and not really sure what's going on. However, you've clearly done your research and sound like you have a really strong awareness of what prodrome symptoms feel like, when you should avoid traditional genital to genital sex (and get creative!), and also what your emotional state is at any given point. These are all things that tell me that you're going to have a really good outcome with managing this well, so take heart!

 

I don't have all that many insights about your test results beyond what has already been mentioned above and I am not qualified to give a professional opinion, but I agree with @WCSDancer2010 and Aerial that despite some conflicting test results, there are more pertinent positive signs pointing to HSV-1 than not, and HSV-2 seems unlikely. That your 11/19 OB responded well to antiviral treatment, that your initial symptoms were more severe (painful urination and a cluster of blisters instead of just two), that your culture results were positive for HSV-1, and that your 11/22 IgG results, though negative, still showed higher levels of antibodies against HSV-1 than those against HSV-2, all suggest that you have HSV-1 and that you do not have HSV-2.

 

As far as the accuracy of different tests is concerned: WCSDancer is totally correct in that real-time HSV PCR assays have the highest sensitivity (true-positive result rate) of any test. Culture swabs are better when the lesion is fluid filled, and IgG blood tests should have a lower false-negative rate when they are done after more time has passed since initial infection because that gives more time for the body to produce antibodies. IgG results are pretty accurate: I'm reading a source that says it has a sensitivity of between 80-98% and a specificity of 96%. However, there certainly can be some variability in this test's accuracy depending on when the test is done, and probably even between blood samples. This is one of the reasons that so far, HSV screening is not regularly a part of STI testing (though should be!) - that the false positive rate would cause too much undue worry when considered over the whole population. What is known is that type-specific antibodies to HSV develop during the the first several weeks after primary infection and persist indefinitely at some level. That's why the second test, although it was within the negative reference range, doesn't rule against a diagnosis of HSV-1 - there was still a slightly elevated antibody signal. I want to do more research into what the reference ranges are for what value can give a positive or negative result, and how much individual variation there is in antibody level. If I find anything interesting I'll post again.

 

It's true that HSV-1 won't present recurrences as much as HSV-2 does, but it's definitely not unusual to still have more frequent genital OBs with HSV-1 in the first year or so after infection (after that there's usually a steep drop-off in OB incidence). Take reassurance in the fact that these will become less frequent going forward, and that one study has given some support to the theory that HSV-1 antibodies have a protective effect against future HSV-2 infection (although it's definitely still possible).

 

Finally, I don't think herpetic whitlow is all that likely as long as you aren't continuously scratching and breaking the skin/lesions during an OB. These viruses are evolved to strongly prefer their original site of infection, and whitlow is actually more common in health care workers who have contact with herpes in many different people (it's considered an occupational hazard).

 

But most of what I said above is just me trying to investigate questions that your case brought up. What I REALLY want to say to you is that you should be encouraged no matter what the lab values are. Although it may not feel like it, you are in a very good position to manage this very successfully because you are an informed patient, and most of all because you are able to talk about what you are going through with those who are close to you. As some of the materials Adrial provides say, most of the suffering caused by a herpes diagnosis is due to the psychological effects, not the physical signs. I hope that some of this clinical information has helped to set your mind at ease, because having a more definitive diagnosis can be comforting in a way too. But taking care of your mental health and well-being, just like you are doing right now, is by far the most helpful and actionable step you can take. Thank you for sharing your experience, and remember you are loved for your openness, honesty, and humanity.

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