MissRealist

Hello! I have GHSV-1. I was diagnosed back in July of 2015 and honestly it took me almost two years to be "okay". There are still occasions, like if I have an outbreak, that I am not not okay. When I was first diagnosed it I had been in a committed relationship for over year so not as long but like you neither of us suspected cheating. My situation was a little different in that my SO did not know he has Asymptomatic HSV-1. For a long time I was terrified with thoughts like yours. My mom has leukemia and lymphoma so I was afraid to touch her for fear of making her sick even though I knew that is not how it worked. I even would carry disinfectant to wipe down the toilet if i was at her house and knew i might use it... It was just this thing in my head where I felt like a walking infection.. I did not want to be touched and was so stressed about how my SO must think I am gross or a walking infection etc. He was super supportive and never had anything negative to say. I would have to agree with others. Listen to your fear to find out what it is really about. what is causing all these thoughts like the root of the problem. For me it was the unknown. I started looking up information and finding answers. Its actually how I found this community. Once I learned the information it put a lot of my fears to rest. Another thing that helped was having people to confide in. I told my mom and sister. They had questions but were fully supportive. I had to find what could help me ease my mind so I could work on myself. Once I knew facts and also understood that no my family and SO were not scared me (the walking infection i thought I was). I started working on self-love. I needed to get out of that mind set. For me i knew i needed to take control know my GHSV-1, I've learned a lot about my triggers and prodromes, how to prevent outbreaks and has successfully started not thinking about it. I got to a point I never thought I would. One were at times I even forget I have it. You can get there to where it is not in your thoughts on a daily basis and you go spans of time without it being a thought. You just need to find what will help you through it, like for me it was taking control and knowing how my body and the virus interacted.

I am following this because I am been on suppression therapy with acyclovir for almost a year and half. I have wondered long term if it would lead to any of the possible more serious side effects but so far I hadn't seen anyone mention them. I don't get any of the side affects from it so far. I hope you hear good news from your doctor!

I would say wait and see only because I am someone who is on suppressive therapy for GHSV-1. I have had it for just over two year this past august. For the first year I was on episodic therapy only and it was miserable because I actually have a weakened immune system and my outbreak are triggered easily by illness, stress, or as a women my period. So if nothing else I was having a outbreak once a month. The only reason I didn't get the sores is we were able to stop them by knowing my prodrome warning symptoms and getting the antivirals on time to prevent the sore during the episodes. near the end of the first year we decided to switch to suppressive therapy. Don't get me wrong I love being on suppressive therapy, because I have only have 1 actual breakout the whole almost year and half since I have been on it. I can pin point why that outbreak occurred and it was some serious extenuating circumstances. I also have not had the Prodrome symptoms show up that tell me I am viral shedding, which can happening with or without symptoms. being on suppressive therapy lowers viral shedding. The reason I say wait, is you stated you it hasn't really being showing to much besides some annoying itching. You maybe someone who your outbreaks will lessen unlike me or other unlucky individuals. However, if it bothersome you can get on suppressive therapy for a short time then go off of it to see if the virus has calmed down in your body. You could also get on a lower dose then average for suppressive therapy if your HSV ins't as active. These are just a few options. The best choice is to talk to your doctor and see what they think and what your most comfortable with. I shared my story so you could understand someone point of view who is on it. Yes I think its great if needed or wanted, but I personally (just my opinion) think its better to wait a little bit so you can understand the virus and how it is for your body and if it is gonna calm down or not for you personally. Maybe don't wait a year like my doctor wanted me to, I feel that was to long considering how bad mine were but you get the idea. I hope this helped or at least made sense!

The previous reply is correct that the swab tests are very accurate most of the time especially when lesions are present. My results also said abnormal and I did the same thing you are. I took that as a sign that it was a false or mistake. However, I was informed that it is in fact a positive. I am not saying this to try and discourage you because I know how it feels to read that result and feel confused by a result but also hopeful that perhaps they were wrong and it wasn't herpes. However, if you would like to be tested again, I would suggest getting type tested to find out if you have type 1 or 2, for example they all thought I had type two because its on my genitals. Knowing your type can help you learn about how the virus may act, how it may respond to treatment, types of treatment, etc. The types do act different. I don't have have type two. I have type 1 down there and the doctors couldn't believe it. They redid the test to be sure, it was correct HSV type 1 just down there. As for the amount of time to wait. The recommend amount of time if your not having an outbreak and will be doing the blood test and type testing is 1 to 2 months. So it has been long enough if you were exposed on Sep. 29. and had a positive swab on Oct. 14. It has been past the month mark so I would say you could go ahead. I was type 1 month after the first lesion appeared. I hope all this helps. If you need anyone to talk to reach out. We are all here for you. I wish you the best.

Do you have antivirals that you take? I am on suppression therapy now, but when I was not I would had a prescription for acyclovir 800mg that i would take 3x's a day for 5 to 7 days. My doctor does still keep this prescription at my pharmacy just in case I do have a breakout. I am not sure what else would stop it. I am watching this topic to see if others have used other methods. When I would feel the prodrome symptoms it would go something like this: My doctor had it so I have the antivirals on hand, can refill them, or if I am out I can call her office and it is the one prescription they will refill over the phone for me because they understand I am not gonna wait for the sores to show up so I can come in and show it to them. Honestly, I am glad my doctor understands that waiting once I recognize my prodrome symptoms is pointless and causes me unnecessary pain. Once we each learn out prodrome symptoms they are pretty easy to identity (typically). You mentioned yours above. Mine start as a wanna be itchy tingly feeling, numbness, next the burning, then the major nerve pain sets in that runs from the back of knees up to my lower back.

I have HSV type 1 but not on my face and didn't experience the less aggressive form of it. Ive had it for just over two years as of this august and I got outbreaks once or twice a month every month so my doctor put me on suppression therapy after my first year. For the first year I was only on as needed therapy; in other words I would call her officer and say fill my prescriptions of the antiviral and they would. My advice would be to talk to your doctor and switch antivirals. Some antivirals don't work for some people. I am on acyclovir and it works great for me. I have one friend who acyclovir did not work for so she take another kind. Where as for me Valtrex did not work. For my supressive therapy I take 400 mg of acyclovir a day and its a miracle for me. It has lead to me only having 1 outbreak this year and that outbreak only occurred because I was under sever stress and had a massive anxiety attack (which can trigger an outbreak in me personally). I know those triggered that one outbreak because I got my warning signs the very next day and shortly after the sores popped up. It tends to be a matter of finding the right antiviral for your body and managing your stress and lifestyle. Lysine is a great supplement that is over the counter that also helps fight the virus or keep it in check. It would be worth researching or looking into! I hope this information helps.

I am still with mine. He gave me oral and we had sex. Cut to a week later I had a full blown outbreak on my genitals. I never had it before, I was tested before him. Two full weeks later I was finally diagnosed with HSV type 1 on my genitals. He got tested and turned out he had HSV 1 but had never been tested for that before during routine STD testing.. In the whole year we were together he had never showed symptoms so i didn't question it. We are almost 4 years strong now and he still shows no symptoms. Meanwhile I take preventive antivirals to keep from getting them cause I would get outbreaks every other month down there. It sucked but I didn't get mad at him. He really did not mean to give it to me: he didn't know he had this virus for life. He did not know about viral shedding; sex ed failed him majorly when it comes to HSV and so did the health care system cause HSV type 1 is often not tested for in an std panel unless asked for because its common. I would have been mad if he had known. But he didn't so that's my story.

Hello, I am 23 Female from Georgia USA. I am looking for both male and female buddies. I have had HSV type 1 for just over two years now. I would like to help out those who are new to HSV because I didn't have a buddy when I first got diagnosed and it was very hard. However, I am also looking for a buddy who has lived with H much longer then myself who could still provide advice. I am fine with close by or far away. I try to check my messages on the forum often!

Hello @PinkButterfly I was just like you. I was angry, I did not feel sexy, I felt dirty... all of it. I understand what your going through. I was diagnosed with genital HSV-1 in August 2016. I was mad that the virus was so common that most health care facilities do not even test for it because maybe it could of be prevented for people like me who have weakened immune systems. I was constantly upset when I heard jokes being made about herpes or cold sores like I was some lesser human being because I had HSV-1. I am telling you, that I do not speak for everyone on this website but I went through what you are going through. I was angry, I grieved for the me "before" HSV. Last month was two years and I am still learning to cope with HSV-1. I still find it challenging at times. Just know your feeling are validated. He should not downplay your diagnosis or your feelings. It is sad that it is so common that as a society it is not tested for on most STD panels unless asked for. If you are not ready to talk about it you do not have to yet. At first only vented to people on this site. Anonymously, you can message with people on here like I did. I eventually told my immediate family like my mother and sisters because they would not judge me or tell anyone. I felt I needed to tell someone and i knew I could trust them. When you are ready you should tell your mother.

I has my first outbreak August of 2016. Had a lot of symptoms without the outbreak for about 2 weeks then finally the outbreak happened so went to OBGYN to get swabbed and visual diagnosis. Of course I had looked up symptoms and signs on the internet because i was having tingling, pain, burning, etc. I figured I had Herpes but I didn't know what kind. When I got the results from the doctor, I came back positive for HSV-1 genitally. Worst 3 to 4 weeks of my life, it took them almost two full weeks to diagnose it because sores did not appear at first so they could not figure out why I was having pain with urination and all kinds of other crazy symptoms. Then the doctors did not believe I had type 1 because that is the "oral kind" (their words not mine). I got type tested right after I got diagnosed because I wanted to know for my own reasons and based on the type depended on if we believed Id got it recently or previously had it. We are about 90% positive that my first outbreak was triggered by severe stress and anxiety due to recent event that coincide and my doctors positive I already had the virus based on my medical history.

I would go to another doctor. HSV 1 and 2 can be in either area. I have type 1 genitally and my boyfriend has type 1 and is asymptomatic completely. I am sorry you care throughout the years has produced such confusing care. You can get your blood type tested to find out what type you have. That is how we found out what type both me and my boyfriend have (he has never shown any symptoms). I used Healthlabs.com. You do not have to use them but i like them and they are trust worthy. I am NOT advertising for them, they are just the only way I could get the type blood test done without paying for a doctor visit or all kinds or lab fees or other blood tests since I do not have insurance. I would recommend either going to another doctor and telling them you need to be type tested, trying a clinic, or the healthlabs place. You can pass HSV to you baby if you are not on antivirals or other preventive measures.

I am a female that has HSV type 1 genitally and orally. I originally got it only genitally; 90% of my outbreaks when/ if I do get them happen there. the other 10% when occur on my mouth area. so it is possible for it migrate to other areas. I am not trying to scare you. I do not believe a blood test can tell a doctor it migrated but the physical symptoms and your accounts can. I would seek a different doctors opinion. This is what I did what I noticed mine migrated: I take daily low dose antivirals as a preventive to stop outbreaks. My triggers for my outbreaks were stress, anxiety, and as a woman my monthly time. I started preventative therapy when my HSV-1 migrated and I started having the rare oral outbreak because for me it was easier to hide a genital outbreak then one people could see on my face. I went from a couple outbreaks a year to none. So my advice is seek another opinion. It could be something else, but it sounds like your may have migrated from oral to genital. My primary care doctors did not originally believe me either. I got type tested at the hospital i have paper work saying I has type-1. I came in telling them I had HSV-1 genitally. They kept saying no that's type-2. I had to keep insisting they were wrong and you can have it both ways. They printed my paperwork then finally believed me. If you are showing physical symptoms you are describing get looked at by another doctor and see if they think it looks like HSV.

As someone who is positive with HSV type 1 I would say test. I did not show symptoms until I was 21 when I had my first outbreak. It took some intensive tracking but we were able to track it back and figure out that i was most likely (about 90 percent positive here) infected many years before that point and never showed symptoms until recently due to another illness that has caused my immune system to weaken. HSV likes weakened immune systems because it is easier for it to show. I have the type that a lot of the population has but does not show symptoms of, the cold sore virus, but mine shows because of my weakened immune system. My boyfriend got tested and he has never shown a symptom just to see if i am at risk of infecting him and turns out he has type 1 without ever showing a symptom. You say you were exposed. I do not know to what extent, but it is worth find out. When you get tested ask if they can type test you at the same time. It is worth knowing. When i was first finding out i did not want to know either. Try to stay calm. I wish you the best.

I am glad im not the only one that did that then lol. I am interested in type testing mostly because we know we both would be HSV-1 positive from having cold sores in the past but I don't know if that's what type is down there, though it seems the most likely. I do believe your amount of time would make you veteran for H. I have stopped worrying about what foods I can eat or shaving. If i find a trigger I will deal with it then, but worrying only made me worse. I am sure the pain i feel is nerve pain from it it comes and goes but I never had it before this OB, it doesn't stress me out but its weird and sucks at times. I asked my doctor just to see if it could of been from this, like the OB triggered it, and she said yes. When it acts up the nerves affected are only on my lower back, butt, and mostly back of thighs. when she said it would more then likely triggered by my OB I just decided it was nothing to worry about and she said it should go away with the OB. I do hope so but other then that stressing over what is doesn't help like stressing over the other stuff did. I am sure you have helped many and even though I haven't been a member long I am glad you came back. Your support is never wasted, and i hope one day to help others like I am being helped on this site! It is nice to read success stories on the site.

My OB started small we thought it was a UTI but then all of sudden over three day it became hell that when we went to my gyno. Im glad to hear you have not had another that was that bad. I initially came here because research did ease my mind versus wondering what now, but like you said when I read about triggers i now am already worrying about that. I will take a step back and try to go day by day and not worry about shaving or sex which I cannot do right now anyway. I did not know they had a name for it lol, but im sure you can safely say that what happened. I am glad today we have these forums because my doctor while helpful couldn't give m e peace of mind other then it would be okay and if i have repeated OB's then we will get me on a daily antiviral. I found the CDC website and it was informative about stats and facts about having H. I will definitely take a step back to take this as it happens cause I know worrying caused me more harm then good. Sharing my story and asking questions as they arise has helped, but randomly searching did make me over react to things that one may not affect me and two I can't do right this moment. If you don't mind me asking I do see you respond to a lot of posts and you did just state you didn't have these types of forums; how long have you been diagnosed and living with H? I heard on here, from the doctor, and the CDC site, it gets better with time, which will vary by person, but is interesting. I read that its due to antibodies we build up over time. Thanks for the info and teaching me a new term so I can avoid doing that!