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    • Just a human being
      People say they want a cure but some days I wonder. If you express how stressful it’s been to support a small cohort through treatment with limited evidence most do not understand, when you ask for support or your struggles to cope with people’s trauma in treatment, or the ingrained societal perceptions, when you try to talk about the evidence it’s like you’ve done some evil thing! Apparently going against the grain to do what’s right is not worthy of human understanding or support! Expressing human vulnerability also appears to be incredibly evil! Damn! Any weakness or difficulties damn your just not worthy of care, support or respect!  After over a year in the space it’s so clear to me why there has been no progress. You are completely ostracized from the community for speaking out on this topic. How many are voiceless here too scared to speak? Yet we rarely hear from you. When you are successful you just disappear (Of course because we don’t hear from you you don’t exist! You must be a “conspiracy theory”. And even if you did then you would just be anecdotal and oh yeah that publishing evidence when they attempt to discredit it... hmm be interesting to hear the “conspiracy” stories on that one...)and I understand why as no one would listen to you anyhow! I hope for anyone reading this you get out alive lest you become a lost soul in purgatory stamping out hope for others due to confusion weaved in science and medicine.   
    • MikeHerp
      Not directly on HSV, but this general overview of where gene editing is, is a very good read. Recommend at least skimming it. A lot of excitement is building around gene editing.  https://67c5cfaa-bdc0-42a5-95c4-a822adc972c7.filesusr.com/ugd/80a6fd_a53ed12021a54292bb50ed1255e31118.pdf
    • Just a human being
      It s not really possible to ban anyone from this forum. Some people would just get back on and create a reign of terror in their wrath. I’ve seen it before. In the end everyone has to accept them and it teaches the group tolerance. Trust me I’ve been through the same feelings and I don’t want to act like I’m always Mr positive or anything cos I am Just a human being!And honestly we need to consider others welfare. They would be lost without this forum. I think if you took it away they would suffer serious trauma. It just takes a small amount of time to work around it! I have deep respect for @MikeHerp it takes a lot of work to get something like this off the ground! I think genetic research is very valuable and important!  I have duel interests human systems and health and agriculture. In the agriculture realm I’m not a big fan of say Monsanto’s brand of genetic research in application. I am a big fan of genetic research to inform plant breeding!  I think this is good work that will be insightful for humans in the future! Don’t take a few difficult people to heart! Trust me I do know it’s difficult.  I didn’t even read a single comment of theirs! Wow that’s big for me! Back to Fred Hutch....    
    • MikeHerp
      What I find interesting about this trial is that even though half life is 25 days, measurements of shedding and lesions will be done until nearly 4 months.  Maybe they expect the effect to last longer than the half life (maybe the binding effect survives longer than the half life). 
    • MikeHerp
      Message from FHC philanthropy:   “There is a small glitch with the website that we are working on. The page is still live, located here: http://engage.fredhutch.org/site/TR/PersonalFundraisingPages/General?px=1802786&pg=personal&fr_id=1574 I will need to request a new link to "fredhutch.org/hsv" for you on Monday, which is not working right now, but you can access the site from the link above in the meantime. I will let you know when that is fixed”
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Headshoulderskneesandtoes

How does sex even happen anymore?!

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Headshoulderskneesandtoes

I feel like I will never have a good sex life anymore. How do you even have sex with someone ?? Just use a condom?? That's not fool proof. Or oral sex??? Dental dams are so weird and not sexy! And it will always be scary 

I'm so paranoid 

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Headshoulderskneesandtoes
3 minutes ago, Poisonflower said:

Yeah sex has been ruined for myself as well

Are you a boy or girl?? What happened? Do you even try to??

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Poisonflower

I'm female. Men are kind of afraid...they don't even try. And feel like they shouldn't have to. Like since I have herpes I should be happy to take what ever I get. I don't even know why they agree half the time they are so afraid to touch me 

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HarrisonIs

That's really sad that they don't try :( and even sadder that you feel like they shouldn't! You still deserve everything the same as you had before you caught the virus :/ 

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FML000

OP, I think disclosure is key.  It's not romantic to ask someone you're interested to get tested or to disclose your own test results, but it's for the best IMO.  Some may disagree, but it's better to tell before than after, and to know.  You might be pleasantly surprised just as I was recently when I revealed I was HSV1 to someone that tested negative for HSV and they were unfazed.  On the flipside, I'm suspecting she might have HPV because of cervical dysplasia but she denies this and it can't be blood tested so...   Still a bit stressful!

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Lisajd
On Sunday, July 02, 2017 at 2:08 PM, Poisonflower said:

I'm female. Men are kind of afraid...they don't even try. And feel like they shouldn't have to. Like since I have herpes I should be happy to take what ever I get. I don't even know why they agree half the time they are so afraid to touch me 

It's possible that they actually don't know as much as what they think they do about it and hence why they tend to back off but the reality is you're probably just choosing the wrong men. How long after you get to know them before you disclose and I interested in something casual or a relationship.  I'm a lot older and I think that makes a really big difference cause I've actually had no issues really with anybody that I disclose to accept for 2 people at the very beginning and to me they were ot worth it because theyhad no clue and I think that might make a big difference.  I have actually disclosed to a few people straight up and a couple of them actually said they dated someone with herpes so don't give up hope.  maybe take a break from dating until you've learnt to handle rejection better.  Dating isnt easy even without herpes. I feel flat because i meet guys who are ok with it but no spark for me.  

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Nightmare7575

It depends on the person.I have said this a few times,but I have been on both sides of this coin,In my early 20s I dated a woman for a while who did not disclose until we got back together a second time dating,she sat me down and told me ,I think she was crying because she thought I was going to run out the doors like others had,but even though I was pissed since she did not tell me the first time we dated,I did not want to be one of the run out guys,so I educated myself we used condoms for awhile and then just got back to knocking boots all the time. The second woman I dated in the early 90s when HIV/AIDS was at it hight, [I think I said' its the 90s,so we need to talk,I told her I had nothing and she said I have Herpes']we talked used condom and had lots of sex.There are people who don't care.

I saw practice what you are going to say ,know the facts and be ready with all the info.Why not tell the person about having  less risky sex until they get comfortable and be ready with all kinds of ideas you can be close to them with and have a hot fun time.,

I can't say if a person is a good or bad person if they leave because we have Herpes,its their health,we can hope they will educate themselves and want to stay .

  

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Poisonflower
9 hours ago, Lisajd said:

It's possible that they actually don't know as much as what they think they do about it and hence why they tend to back off but the reality is you're probably just choosing the wrong men. How long after you get to know them before you disclose and I interested in something casual or a relationship.  I'm a lot older and I think that makes a really big difference cause I've actually had no issues really with anybody that I disclose to accept for 2 people at the very beginning and to me they were ot worth it because theyhad no clue and I think that might make a big difference.  I have actually disclosed to a few people straight up and a couple of them actually said they dated someone with herpes so don't give up hope.  maybe take a break from dating until you've learnt to handle rejection better.  Dating isnt easy even without herpes. I feel flat because i meet guys who are ok with it but no spark for me.  

Dating was a breeze for me. Until this I really dont know how to deal with this...I don't want to have to do this. It's really lonely I haven't been with anyone who really wants to be with me. I don't want to settle for anyone who has to SETTLE for me and that makes me depressed. I was in a abusive relationship for 3 years cause I felt no one else would want me and he helped me believe that only to come out of it date someone else and him tell me I'm not even worth it...that was a big slap in the face. I've been rejected by men who have been my friends for years. And honestly I'm just really tired of it all. The disclosing the rejection the feeling far less than desireable. I'm 25 I'm supposed to be happy and full of life but I'm insecure and ashamed...I took a break from dating for over a year. I'm lonely and so far men have done nothing but scar me so bad that I literally have panic attacks when I get too close to them and I sabotage it myself. Maybe I need to seek therapy. Cause I'm ruined

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Lisajd

You are not ruined. Be happy single until men grow up. You had the strength to leave an abusive relationship and you will get through this too.  Ive been divorced 20 years and feel like im not worthy. I get passed over for others although ive a lot to offer.  Maybe therapy might help.  These guys who were friends...you called their bs out. While you feel rejected because of herpes i reckon herpes saved you from being used by them.  Besides a relationship whats important in life for you.  Focus on something you enjoy.  I love to cycle and travel.  It helps me feel less alone when i do things that i love.  I married at 23. Divorced at 31 because of anorexia. I regret not having fun in my early years and regret wasting my life being ill for so many years and losing a lot.  For me h isnt so bad as i realise whats important in life.   Dont let men bring you down. Its not worth it.  

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Poisonflower
9 hours ago, Lisajd said:

You are not ruined. Be happy single until men grow up. You had the strength to leave an abusive relationship and you will get through this too.  Ive been divorced 20 years and feel like im not worthy. I get passed over for others although ive a lot to offer.  Maybe therapy might help.  These guys who were friends...you called their bs out. While you feel rejected because of herpes i reckon herpes saved you from being used by them.  Besides a relationship whats important in life for you.  Focus on something you enjoy.  I love to cycle and travel.  It helps me feel less alone when i do things that i love.  I married at 23. Divorced at 31 because of anorexia. I regret not having fun in my early years and regret wasting my life being ill for so many years and losing a lot.  For me h isnt so bad as i realise whats important in life.   Dont let men bring you down. Its not worth it.  

Thanks. I've been trying to do some creating lately and picking up a job. Maybe it will all turn around 

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