25 Years And Counting...

[HollyGirl]

I could write a novel about my experience…

 

A few words and thoughts from a non-medical mind and thriver:

 

There's a hugely fulfilling life out there if you make the decision that this doesn't define you. Because it doesn't. And it shouldn't. Let it be the catalyst to help you discover the depths of your compassion, your bravery, your protective instincts, your self-love, your breadth as a human being, your balance. Let it be the divining rod to help you find people on this planet who will accept you as you are and to weed out those who just aren't worth the time of day. Great exercise early on in this life. Let it teach you what unconditional love is. THAT is a huge gift.

 

If you've just been diagnosed and having frequent outbreaks, be nurturing with yourself. Find ways to boost your immune system, get plenty of rest, and above all else, let go of your negative thoughts. Go ahead and go through all your stages of grieving, it's part of the process, then make peace with it. The aspect of making peace will likely be a turning point for you both physically and mentally. Your body WILL mount an immune response over time. More than anything, realize that you are anything but alone, there are lots of us out there living really great, full lives who share this predicament. This only defines you IF YOU LET IT. I don't know Adrial, but his words and wisdom resonate deeply with me. Just wish this resource, and the Internet, were around when I was first grappling with my diagnosis. What a wonderful forum, sanctuary and safe haven!!!

 

I hibernated and withdrew into quasi-depression in the beginning. I wasn't "the kind of woman this happens to"! Truth is, it happens to all kinds of people who don't invite it into their lives, and to some who do to advance a relationship with someone they care about. It doesn't discriminate, any more than a cold or the flu discriminates. It's an opportunistic virus. In hindsight, I continue to blame the media for overblowing this. Nobody does that with cold sores, though I'm almost grateful that the stats are showing that HSV-1 is to blame for 50% of new genital herpes diagnosis. Maybe that will provide the tipping point for both greater understanding of what this virus is (and is not) and to accelerate a vaccine to prevent and one to halt. Fear and loathing are very powerful marketing tools. My humble but strong advice? Make the decision not to let those inflammatory voices dictate how you feel about this ailment.

 

I rarely ever get OB anymore. Maybe 2-3 times in 15 years. Can't remember the last time. No big deal. It was different in the first 2-3 years. Didn't have to take antivirals to control. Seems to have protected me against oral herpes because I still test serum negative for that. Yea!!! I got married (to someone who was HSV2 positive, as fate would have it, prior to meeting me.) I thought he was a gift from above when he told me he had herpes! Came as such a huge relief that we were on a level playing field. And then we all but forgot about it. We have healthy, happy, wonderful children. I live a rich, full life that has zero connection to this virus. And we had beautiful sex to conceive them! LOL

 

I'm now divorced now and having to have "the talk" for the first time in 20 years. I won't lie, it stresses me out. I've met an incredible human being and I don't want to lose him over this. But that isn't mine to control, is it? If he is the man I imagine him to be, then he'll accept this as part of a greater package that he thinks is pretty amazing. And if he doesn't, I need to know that too. This forum has been deeply empowering for me as a resource to find the right tone, the right words, the right attitude to convey. Thanking all of your for that as it is helping me as well.

 

We all are as lovable as our ability to love and reciprocate. This isn't an incurable cancer, or some deathly pandemic, or brain-eating amoeba, or disabling deformity. It's a skin condition that resurfaces in some from time to time that puts us briefly out of sexual commission. It's a nuisance, not a death sentence. It's manageable. It's also an invitation to take really good care of ourselves and to get in tune with our own bodies.

 

I'm taking suppressive antivirals now, not because I need them to control outbreaks that I no longer get, but purely out of a desire to protect my potential partner from viral shedding, if in fact, that poses a risk for him. Dunno. Erring on the side of caution. (Which 20 years ago no one knew about -- we were told that if we didn't have outbreaks, we couldn't spread it. Frankly, I never did pass it to anyone without protection when I was asymptomatic, but I'm not qualified to dispute the findings of the asymptomatic viral shedding studies, though I'd love to know if the pharmaceutical companies sponsored $$$ the research. Gold mine for them if they did. And suspect. Our fear of rejection and being infectious is a huge profit center, real or imagined.) If you are a Harry Potter fan, think of this as your Boggart. Then deal with it accordingly.

 

I just want to do everything in my power to reduce the chances of passing this on. Frankly, I'm guessing mine is very low at this stage of the game, but there are no studies I'm aware of on long-term presence of virus and the antibody level connection to viral shedding rates. Would make for an important study, especially since antibodies develop off-the-charts over time.

 

In closing, suicidal thoughts, deep depression, feelings of worthlessness, etc. are SO unnecessary and heartwrenching to hear about!!! This seems to be a safe place to reach out to others sharing a common life experience. Come here, be present, put your truths on the table. And then breathe a sigh of relief. You have a lot of company.

 

If one person felt better about their prospects by reading this post, then it was worth the time it took to write it. Now go out and find a thousand things to be happy about!

 

 

[ihaveittoo]

As someone who has had herpes just a few years longer than you I'd like to say, Great Post!

[2Legit2Quit]

I love your post and it's great! Hugs to you!

 

In regards to transmission during asymptomatic periods, that is the root of the majority of transmission. People didn't have active sores when having sex and transmitted it, it's normally done by those who are completely asymptomatic, although possible to never transmit, the risk is still there. Those unaware due to no symptoms, are at higher risk of transmitting it, than those of us who are aware of the virus and our body.

[HollyGirl]

Yes, I've read those studies. It isn't that I am disputing the theory or discounting it, only that I'm questioning the scientific merits of a catch-all type of study that doesn't distinguish between old and new infections and the body's ability to suppress the virus over time.

 

However, digging deeper, the fly in the ointment is that the data of the newly infected is co-mingled with the data of those who have long-standing antibody responses. From what I've read, there is some indication that a certain threshold of viral shedding is required for spreading this virus and that even when there is trace viral shedding, it doesn't necessarily mean that it is enough for transmission. I need to sleuth out the studies I've read to back that up, but for now, it is sufficient to say that there are more questions than answers in this regard.

 

Furthermore, those that are asymptomatic (or don't recognize mild symptoms) but have NEWER infections very likely have very different antibody resistance than someone building it up over, say, a decade or more. There is very little research around this, but there should be.

 

Said another way, someone who is asymptomatic but has only been infection 6 months to a year is likely to be FAR more contagious than someone who has had this long-term, is asymptomatic, and whose body (if healthy) has mounted a substantial immune response to the virus. Or, someone who was once symptomatic but is no longer. It just hasn't been studied out. Lots of gaping holes in the research, from my vantage point.

 

In the absence of concrete knowledge and data, of course the right answer is to err on the side of caution, but also not to freak out about it.

 

What I marvel at is that statistic that 80% of those infected with HSV2 don't know it. On a certain level, that tells us that for the vast majority of those infected, it is so NOT a big deal that they aren't even aware of it. And the fact that it is not a routine component of an STI panel tells us that from the vantage point of the health care industry, the knowledge is almost more detrimental (psychological implications of being stigmatized) than the benefit of knowing and not passing it on. Interesting message being passed along from the medical side of this, don't you think?

 

Clearly, there are many examples of people who have a severe reaction and I am not dismissing them. But this can be said of the common cold or the flu. Again, it's as much an argument for taking care of one's overall health as it is anything else.

 

 

[2Legit2Quit]

Actually the shedding rates are for those who are asymptomatic or have very few obs. Obviously the longer you have it, the less you shed.

 

In studies it is well noted that someone thwir first year, is more infectious than those who have had the virus longer. All's we know is the longer you have it, the less shedding you have. W that said, someone like you who has had it a long time and under control, has suddenly out of the blue, had an aggressive onset on that. You're looking for black and white numbers where it is impossible for any to exist, w so many different caveats pertaining to this infection.

 

I don't think the lack of study in it from the health care side is as innocent as you suggest. I think a lot of politics go into that. Just watch the Dallas Fight Club which is a true story and come back and tell me how honest our medical community is w the citizen's.

[HollyGirl]

2Legit, we are on the same page. Politics and economics run dirty interference on many things that work contrary to the greater good and public interest. I'm going to restrain myself on this because you are 100% correct in suggesting that all is not as it seems.

 

Silence on the matter only gives "them" greater control over the outcome. That is why a forum such as has the potential to be very powerful. Stigmas keep people quiet out of guilt and shame. Confidence allows them to speak up and ask educated, depersonalized questions. Food for thought…

 

I have every confidence that the cures for many thing are being buried daily in the interest of "maintenance" research versus curative research. If we cured diabetes, a $230+ billion dollar industry would vaporize overnight. What do you think the over/under on that is? Why is this any different? A rampantly growing viral infection that net-net does minimal physical harm but inflicts tremendous psychosocial damage, controlled only by a drug? Really? If the bottom line drove all decisions (a little sarcasm on my lips), there'd never be a cure. Just a little overpriced pill people took daily for the rest of their lives... By the millions. When we decide collectively that we are far more than profit centers with a heartbeat, we have a prayer.

[2Legit2Quit]

Yup,.. We are totally on the same page and it's disgusting. I already knew our FDA and big pharma industry were corrupt, but after watching that movie ibwanted to throw up. They actually knew a drug was killing cancer patients, that was created to treat cancer, so then they chnage it to treat those w HIV, but guess what that drug does? Kills most cells, including the T cells, which made them deteriorate faster and die and the FDA knew and didn't care.

 

Humanity can really disgust me at times.

[WCSDancer2010]

I'm now divorced now and having to have "the talk" for the first time in 20 years. I won't lie, it stresses me out. I've met an incredible human being and I don't want to lose him over this. But that isn't mine to control, is it? If he is the man I imagine him to be, then he'll accept this as part of a greater package that he thinks is pretty amazing. And if he doesn't, I need to know that too. This forum has been deeply empowering for me as a resource to find the right tone, the right words, the right attitude to convey. Thanking all of your for that as it is helping me as well.

 

We all are as lovable as our ability to love and reciprocate. This isn't an incurable cancer, or some deathly pandemic, or brain-eating amoeba, or disabling deformity. It's a skin condition that resurfaces in some from time to time that puts us briefly out of sexual commission. It's a nuisance, not a death sentence. It's manageable. It's also an invitation to take really good care of ourselves and to get in tune with our own bodies.

 

So glad we have been of help to you in this new and strange part of your H journey. I love what you said above and I felt it needed to be highlighted for the newbies to GET.

 

As for asymptomatic shedding stats, the "experts" will tell you themselves that there's a lot we don't know. But one of the biggest groups who pass this on are those who are in the 80% who don't know they have herpes. Those of us who know do things to protect our partners. That is the BIGGEST way to stop the spread.

 

IMO the not testing it the biggest cause of the spread of Herpes..... because that 80% can pass it on and the next person may be in the 80% ... and the shittiest way to find out you have this virus is to find out you passed it on (unwittingly!) to someone you love/care for. So the focus needs to me more on getting Herpes IgG testing on the standard testing panel with the Western Blot as backup for those questionable results.

 

I'm 100% out and it hasn't affected my friends/life at all. I'm even out on my dating profiles (except Tinder simply because there's only 500 words and thus less to show who I am FIRST before they see my disclosure statement). I've actually had men contact me saying they are IMPRESSED at my transparency and honesty.... to me this proves that with confidence and an attitude that this doesn't define me, *most* people will love you no matter what. And those that don't are not worth my time :)

 

Welcome aboard and thank you so much for your post! I know it will help a lot of the Newbies on here :)

 

[Katidid]

Hi and welcome! I too have had this a very long time. Married 20 yrs and have not passed it on. Have you been successful in not passing it on as well? Are you on anti viral? Good luck in the future

[desertlove]

Thank you for your post! @Hollygirl

 

@katidid The fact that you haven't passed it on is amazing! If I may ask, have you used protection and been on antivirals for that entire time?

[Katidid]

Actually, just started anti viral.....I'm in my 4th week. We always use a condom....my husband is fine with that, but we have oral sex a lot......a lot and it has not been passed that way either. I understand that that is very rare anyway for h2. I had a relationship prior to this one ( just a few months) and, again, condoms were used and I did not pass it on

[Katidid]

And....when I told my husband, he said he would be the last person I would ever have to tell. He was so in love lol.....and still is. But.....condoms, anti viral and having had this a long time seems to be in our favor.....yours too! From what I have read, being female helps too......for once lol. Using all these scenarios puts us at like a 1%chance of passing it on. Let me know how it goes.

[Katidid]

The other guy I mentioned previous to my husband. .........at first said "that's something to think about"and he called a few weeks later abd saud he had handled that completely wrong and wanted to give it a go. After we started our relationship (using condoms) his previous partner found out she was pregnant, so he ended up moving closer to his child which was great for him

[Next step]

Im concerned because at 44 I feel like I'm on the wrong side of hope here. I'm already struggling with dating at this age ( never had the chance to experience marriage or kids ) and have only had fleeting little encounters for the last many years . I'm cautious with protection  too and feel like I have been unfairly given a burden to carry with this . I honestly don't know how I will go about finding something meaningful with this thrown into the already difficult mix of trying to find love at my age.

[Jasmine10]

very inspiring to read this thank you

[Alisonbr]

Love this post . Ok I was diagnosed two weeks ago and I was wondering can you still have oral if your not in an outbreak? Did you and your ex ? If you don’t mind me asking otherwise feel free to not any. Also I was exposed / infected sept.29th and my sores are all gone but I feel super doper fatigued . Is that related or no ? Is it permanent or am I still in an outbreak?

[HollyGirl]

@Alisonbr, I don't know how to answer that.  I got HSV2 and mono at the same time and was utterly exhausted.  If this hit you hard emotionally, you may be fatigued from the stress.  Stress can bring you down like that.  The first outbreak can take the wind out of your sales, but it really does get remarkably better and milder in subsequent outbreaks.

As for oral, yes we did and everything I've read says that it's REALLY REALLY rare for HSV2 genital to be passed to oral.  It just doesn't thrive like that.  I've had my dermatologist test virtually every bump and zit that ever showed up on my face just to double-check what it was... and it was never HSV2.  So I say as long as you and your partner are being candid with one another, if you want oral sex, go for it.  But before you do, read, and be discriminating about what you read.  Honestly, I would start with Terri Warren's forums at Westoverheightsclinic.com.  I don't think there is anything that hasn't been asked and she's as articulate and precise and you could hope for.  And she's an expert on this if there ever was one.  Read!  Then find your comfort zone.  Everyone is different.  Some people have strong immune systems; some weak; some are compromised by other illnesses.

[Gibouep]

On 12/5/2015 at 11:47 AM, HollyGirl said:

I could write a novel about my experience…

 

A few words and thoughts from a non-medical mind and thriver:

 

There's a hugely fulfilling life out there if you make the decision that this doesn't define you. Because it doesn't. And it shouldn't. Let it be the catalyst to help you discover the depths of your compassion, your bravery, your protective instincts, your self-love, your breadth as a human being, your balance. Let it be the divining rod to help you find people on this planet who will accept you as you are and to weed out those who just aren't worth the time of day. Great exercise early on in this life. Let it teach you what unconditional love is. THAT is a huge gift.

 

If you've just been diagnosed and having frequent outbreaks, be nurturing with yourself. Find ways to boost your immune system, get plenty of rest, and above all else, let go of your negative thoughts. Go ahead and go through all your stages of grieving, it's part of the process, then make peace with it. The aspect of making peace will likely be a turning point for you both physically and mentally. Your body WILL mount an immune response over time. More than anything, realize that you are anything but alone, there are lots of us out there living really great, full lives who share this predicament. This only defines you IF YOU LET IT. I don't know Adrial, but his words and wisdom resonate deeply with me. Just wish this resource, and the Internet, were around when I was first grappling with my diagnosis. What a wonderful forum, sanctuary and safe haven!!!

 

I hibernated and withdrew into quasi-depression in the beginning. I wasn't "the kind of woman this happens to"! Truth is, it happens to all kinds of people who don't invite it into their lives, and to some who do to advance a relationship with someone they care about. It doesn't discriminate, any more than a cold or the flu discriminates. It's an opportunistic virus. In hindsight, I continue to blame the media for overblowing this. Nobody does that with cold sores, though I'm almost grateful that the stats are showing that HSV-1 is to blame for 50% of new genital herpes diagnosis. Maybe that will provide the tipping point for both greater understanding of what this virus is (and is not) and to accelerate a vaccine to prevent and one to halt. Fear and loathing are very powerful marketing tools. My humble but strong advice? Make the decision not to let those inflammatory voices dictate how you feel about this ailment.

 

I rarely ever get OB anymore. Maybe 2-3 times in 15 years. Can't remember the last time. No big deal. It was different in the first 2-3 years. Didn't have to take antivirals to control. Seems to have protected me against oral herpes because I still test serum negative for that. Yea!!! I got married (to someone who was HSV2 positive, as fate would have it, prior to meeting me.) I thought he was a gift from above when he told me he had herpes! Came as such a huge relief that we were on a level playing field. And then we all but forgot about it. We have healthy, happy, wonderful children. I live a rich, full life that has zero connection to this virus. And we had beautiful sex to conceive them! LOL

 

I'm now divorced now and having to have "the talk" for the first time in 20 years. I won't lie, it stresses me out. I've met an incredible human being and I don't want to lose him over this. But that isn't mine to control, is it? If he is the man I imagine him to be, then he'll accept this as part of a greater package that he thinks is pretty amazing. And if he doesn't, I need to know that too. This forum has been deeply empowering for me as a resource to find the right tone, the right words, the right attitude to convey. Thanking all of your for that as it is helping me as well.

 

We all are as lovable as our ability to love and reciprocate. This isn't an incurable cancer, or some deathly pandemic, or brain-eating amoeba, or disabling deformity. It's a skin condition that resurfaces in some from time to time that puts us briefly out of sexual commission. It's a nuisance, not a death sentence. It's manageable. It's also an invitation to take really good care of ourselves and to get in tune with our own bodies.

 

I'm taking suppressive antivirals now, not because I need them to control outbreaks that I no longer get, but purely out of a desire to protect my potential partner from viral shedding, if in fact, that poses a risk for him. Dunno. Erring on the side of caution. (Which 20 years ago no one knew about -- we were told that if we didn't have outbreaks, we couldn't spread it. Frankly, I never did pass it to anyone without protection when I was asymptomatic, but I'm not qualified to dispute the findings of the asymptomatic viral shedding studies, though I'd love to know if the pharmaceutical companies sponsored $$$ the research. Gold mine for them if they did. And suspect. Our fear of rejection and being infectious is a huge profit center, real or imagined.) If you are a Harry Potter fan, think of this as your Boggart. Then deal with it accordingly.

 

I just want to do everything in my power to reduce the chances of passing this on. Frankly, I'm guessing mine is very low at this stage of the game, but there are no studies I'm aware of on long-term presence of virus and the antibody level connection to viral shedding rates. Would make for an important study, especially since antibodies develop off-the-charts over time.

 

In closing, suicidal thoughts, deep depression, feelings of worthlessness, etc. are SO unnecessary and heartwrenching to hear about!!! This seems to be a safe place to reach out to others sharing a common life experience. Come here, be present, put your truths on the table. And then breathe a sigh of relief. You have a lot of company.

 

If one person felt better about their prospects by reading this post, then it was worth the time it took to write it. Now go out and find a thousand things to be happy about!

 

 

Hi, thanks for sharing.  Just wondering how ling you wait until you disclose?  Before sex of course but do tell him you want to get to know him first?

 

[Marco619]

HollyGirl... thank you so much for this post.  I’m 51 years old and recently diagnosed (4 weeks ago). My first outbreak was awful. I’m finally feeling human again, physically... but I’m emotionally a wreck.  It’s all I think about. Your post was very encouraging.... I really appreciated it.  I wish you all the best. 

[Michgirl73]

On 9/6/2018 at 10:31 AM, Next step said:

Im concerned because at 44 I feel like I'm on the wrong side of hope here. I'm already struggling with dating at this age ( never had the chance to experience marriage or kids ) and have only had fleeting little encounters for the last many years . I'm cautious with protection  too and feel like I have been unfairly given a burden to carry with this . I honestly don't know how I will go about finding something meaningful with this thrown into the already difficult mix of trying to find love at my age.

I am like you I’m 45 I did have kids, but was hit with list 3 mths ago and I think dating was extremely hard before and it can only imagine it’s going to be harder now with this crap.