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I do know women that have HPV and I think because it is a "respected" STI & because of its potential to cause cervical cancer, HPV is openly talked about & the medical community seriously addresses patients that are diagnosed with HPV - research has been done and a vaccine developed. I do understand the difference between the viruses and the elusive nature of the HSV virus - it's not a simple fix but because HSV is a highly stigmatized STI people living with it have to tolerate little to no medical support. I don't think it's fair to be diagnosed with a lifelong incurable disease and not have the support of a medical professional and not to have the hope of the research being done that could lead to a vaccine or a cure - I don't think it's fair

Thank you for writing back. I understand the stats and the fact that I'm surrounded by people that have HSV-2. Isn't it interesting how I do not know one other person, personally that has HSV2 & speaks about their condition. I find it unbelievable that my general practitioner, gynecologist and my infectious disease doctor couldn't answer many of my questions or expand on how HSV will affect my overall health or how I should conduct myself sexually going forward. I'm hoping that people living with HSV, those who are even aware that they have it, since it is not tested for it can organize and demanding testing and funding for the research that needs to advance. Writing a script and being dismissed is unacceptable. As for me being an army of one and outing my condition to my community- that will do nothing but cause me emotional grief at this point and as lovely as it is to say that - well the people who love you will except you - I refuse to put myself in the position to be ostracized while trying to raise small children and work in a very cookie cutter community. Everyone is not my friend and I don't expect them to love me and accept my personal medical condition - what I do need to make sure is that I'm emotionally protected right now. I have been through enough. I know there are creative ways & anonymous way to advance the attention surrounding HSV.

Would it be possible to contact Dr. Cullen or Dr. Leon and find out how much money is needed to be raised in order to help fund the research that could lead to a breakthrough with HSV? If we had a number or a goal in mind wouldn't it be great for this community to do a "go fund me" and contribute to the scientist that could actually create change and movement around the stagnant virus. I'm working on a letter we can send to the CDC over Christmas break - I will post it as soon as it's done. I feel it's important to be proactive and who knows we could be the change that's much-needed but these things only work when done collectively - and for most of us with HSV, anonymously as well.

https://sites.duke.edu/cullenlaboratory This is where some of the research is being done - research is under funded. Unfortunately there's not a lot of attention around these viruses as they're not life-threatening.

When I tested the waters to tell my family, at which point I was in so much pain I couldn't eat. I had to try and say something. I was met with this " we are not the kind of people that get that sort of thing it just is not in our family we don't get it." I looked around the table and I saw in everyone - past shingles infections - mono - everybody had had chickenpox and I knew that HSV was not acceptable. The only people in the world who know are my boyfriend and my best friend and as of right now I will tell no one else. Even when I spoke to my doctor about the symptoms I know are caused by the HSV virus I was met with: that nerve pain it's in your head or no that's not herpes related - it's like everybody has their collective head up their "assumed to be pristine" ass over this virus. No you're not alone - I try to remind myself that every day even though I know absolutely no one personally who has this virus - and when I say this virus I mean particularly HSV-2

Yes I have joint pain too and it is the HSV virus that causes it. You're not alone with this.

I agree with you being comfortable talking about the virus that you live with is incredibly important it's not an option for me at this point. I won't subject myself to that or my children and believe me I have tested the waters. What I want to see is more attention from the medical community and I want to see the CDC acting responsibly toward this virus. I want to see the doctors that are actually doing the research being funded properly. I know that there is a way to make a collective noise surrounding HSV in an anonymous way there is so much technology out there that provides a platform for just that - so much social media that we don't have to go around parading our status and subjecting ourselves to further emotial trauma - we can still make a difference and remain anonymous for now. We just have to be creative. OK for example I was thinking what if I wrote a form letter to the CDC one that anyone could cut-and-paste and we email it to them on a daily basis - a letter that demands testing for HSV and for the CDC to recognize it as a reportable sexually-transmitted disease that deserves to be tested for and requires funded research and physician education on treating patients with HSV. What if that form letter was copied and pasted and emailed to the CDC by everyone 3 or 4 times a day and we flooded the CDC with what we want to see happen - I don't know just a thought at least it's doing something...lets get creative our health deserves real attention.

I was diagnosed six months ago. I was given 3 back to back rounds of seriods with two two differ antibitics for a stubborn sinus infection - this tipped the balance of my immune system and I had my first outbreak - not only do I have HSV 1 I have HSV 2 as well. The first outbreaks for both came at the same time lasting over a month with extreme pain and sickness. I have been on 1 gram of valtrex since then - I'll stay on that dose for a year then revisit. Antivirals mute the symptoms thankfully. I have nerve pain & constant pins and needles down my legs and arms, nausea, I get extremely tired like I'm about to get the flu. There's also this cold sensation in my head like dripping water so bizarre... it comes and goes and was one of my first symptoms before my initial outbreak. I feel like this came out of nowhere aside from the sinus infection I was the picture of health - my passion is fitness and nutrition - I just got life insurance prior to this and they asked me why I was getting so much life insurance when I'm so healthy. I had a physical the doctor said I had a heart beat of an athlete. Its as if an sledgehammer came out of the sky and just landed on me my boyfriend doesn't have it and my long-term boyfriend before him doesn't have it ... So I must've gotten this from the man I dated in between we had a conversation about sexual health we've both been tested for everything so we thought ....hell he's currently engaged and very happy ...he's a dear friend of the family - I assume he's asymptomatic - Either that or I have had this for over 10 years and got it from my ex-husband who is remarried and has children - or I've had this since college and got from my long term college boyfriend who I'm also still friends with I don't think so I'm in my 40s! I haven't even had a yeast infection since high school!! The thing that gets me so much too is that nobody talks about this virus nobody educates anybody about this virus - the doctors look at you and say it's very common don't worry I'm not afraid to touch you and then don't call you back!! So many people are living with this virus and don't even know it so they can not go foward and manage their health properly ~ if I had known I carry this bitch of a virus I never would've compromised my health by taking back to back steroids for a sinus infection!! I'm sorry for this vent - thank you all so much for your support and for those of you who are newly diagnosed please don't be scared by what I'm writing - this is me venting. I'm going to get up now I'm going to make breakfast we're going to see Santa I'm going to have some laughs and then I'm going for a hike...life goes on. My Christmas wish is that we the people living with HSV become the powerful change needed to advance the research and dispel the stigma around HSV. I would sit on Santa's lap and ask for this but I am contagious ....lol ;)

I was diagnosed six months ago. I was given 3 back to back rounds of seriods with two two differ antibitics for a stubborn sinus infection - this tipped the balance of my immune system and I had my first outbreak - not only do I have HSV 1 I have HSV 2 as well. The first outbreaks for both came at the same time lasting over a month with extreme pain and sickness. I have been on 1 gram of valtrex since then - I'll stay on that dose for a year then revisit. Antivirals mute the symptoms thankfully. I have nerve pain & constant pins and needles down my legs and arms, nausea, I get extremely tired like I'm about to get the flu. There's also this cold sensation in my head like dripping water so bizarre... it comes and goes and was one of my first symptoms before my initial outbreak. I feel like this came out of nowhere aside from the sinus infection I was the picture of health - my passion is fitness and nutrition - I just got life insurance prior to this and they asked me why I was getting so much life insurance when I'm so healthy. I had a physical the doctor said I had a heart beat of an athlete. Its as if an sledgehammer came out of the sky and just landed on me my boyfriend doesn't have it and my long-term boyfriend before him doesn't have it ... So I must've gotten this from the man I dated in between we had a conversation about sexual health we've both been tested for everything so we thought ....hell he's currently engaged and very happy ...he's a dear friend of the family - I assume he's asymptomatic - Either that or I have had this for over 10 years and got it from my ex-husband who is remarried and has children - or I've had this since college and got from my long term college boyfriend who I'm also still friends with I don't think so I'm in my 40s! I haven't even had a yeast infection since high school!! The thing that gets me so much too is that nobody talks about this virus nobody educates anybody about this virus - the doctors look at you and say it's very common don't worry I'm not afraid to touch you and then don't call you back!! So many people are living with this virus and don't even know it so they can not go foward and manage their health properly ~ if I had known I carry this bitch of a virus I never would've compromised my health by taking back to back steroids for a sinus infection!! I'm sorry for this vent - thank you all so much for your support and for those of you who are newly diagnosed please don't be scared by what I'm writing - this is me venting. I'm going to get up now I'm going to make breakfast we're going to see Santa I'm going to have some laughs and then I'm going for a hike...life goes on. My Christmas wish is that we the people living with HSV become the powerful change needed to advance the research and dispel the stigma around HSV. I would sit on Santa's lap and ask for this but I am contagious

I'm feeling the weight of this word - contagious. I am contagious as in: capable of being transmitted by bodily contact with an infected person or object: contagious diseases. carrying or spreading a contagious disease. I am the infected person. This really happened. I wanted so badly for the second half of my life to be better - I was doing everything to ensure that. Now I'm contagious. I'm so tired, my body is hurting and I'm scared and I can't even tell anyone. I'm fighting a virus my body can't overcome. I have to keep doing it all - the dishes the food shopping the job homework showers play dates laundry chit chat - saying nothing because I am contagious. Tomorrow is a new day. Tonight I'm feeling the weight of being contagious.

I just read through this thread and this is a great dialogue - even if there were some hurt feelings - the conversation is an important one. We all agree that the CDC is in the wrong that the doctors are largely misinformed, uneducated and dismissing of the HSV patient and the realities of living with the virus. HSV remains under funded, under researched and stigmatized mainly because of the CDC not responding to the severity and scope of HSV. The stigma and silence that surrounds this STI enables the CDC to continue to maintain their party line and do nothing about HSV. The question is where do we go from here ...there's powers in numbers and we, the people living with HSV have large, strong and growing numbers. Now the question is how do we on a grassroots level get creative and make a collective noise?

Thank you, that is interesting information. So I did some research, and HSV2 is not reported to the CDC, in fact it is not at all mentioned or recommended to be tested for when getting an STD screening, even when you are pregnant. The CDC states that, "If you are a pregnant woman, you should request syphilis, HIV, chlamydia, and hepatitis B tests early in your pregnancy." It is as if HSV doesn't effect millions of Americans each year. Yet it is a virus that carries a massive stigma and can in some cases cause serious health issues, yet it is not even mentioned. I find this unacceptable. I contracted the virus from a man that is asymptomatic, I was in fact asymptomatic for years apparently. I thought I was being tested for all STIs, as did he. Had we know, we could have prevented transmission and protected our health.

I have had some improvement, thank you. I am on daily suppressive therapy, one gram of valtrex daily so I am sure that helps. It is interesting that I have never had anything resembling a "cold sore" in my life. My hope is that there is more awareness and attention focused on the study of the HSV 1 and HSV 2 herpesviruses. I have "atypical" symptoms that I know are related to the viruses....I feel that doctors have no clue the scope and far reaching effects of viruses. HSV is not a typical virus. There are too many variables that contribute to its manifestation.

I just read the above post and it's a surprising and staggering number of views of this site per month ~ wouldn't it be amazing if all of those people (myself included) decided to make some noise ~ HSV must be included when we are tested for STIs everyone needs to know their status. That is how we break the stigma, cut down on the spread of HSV and bring attention to the need for funding the research of HSV. All the shame and silence does is feed the stigma, keep the scripts being written and some folks are making a lot of money off us. Isn't there an anonymous way to make a collective noise surrounding HSV? Is there way to start a go fund me for Dr. Leon to take the research to the next level? I completely understand that there's not going to be a race for the cure for herpes & I completely understand that I'm not going to go pick my kids up at the elementary school waving my herpes + flag proudly in the air ~ but for fuck sake there are so many of us who are H+. We come from all walks of life and we have so much to offer...we are intelligent, professional, literate, people with this diagnosis can't we get something done to advance the awareness and treatment of HSV so that we don't have to walk into a doctors office and get dismissed after being given misinformation regarding a lifelong infectious disease like HSV.

Thank you for the laugh and the response ~ I noted your suggestions and I'm going to ask my ID doctor if they are right for me. To answer your question I was only on steroids for a few weeks, three rounds for a sinus infection when I had my first OB. The OB was brought on by the steroids compromising my immune system ~ all of my doctors agree had I not been put on back to back steroids for those few weeks I would probably still be walking around asymptomatic and completely clueless of my status.