Jump to content

All Activity

This stream auto-updates     

  1. Yesterday
  2. I'm a 63 yr old female...found out I have Genital Herpes from a blood test....have NEVER had an outbreak...had no idea I had it. I had to have had it for decades... II have a partner that does not have herpes and I wanted to go on Suppression Therapy. My PCP says that she can only prescribe acyclovir 400mg. twice a day for 10 days, but will not put me on it any longer. Since I do not have outbreaks. I probably have internal shedding. Being on a daily dose will keep this under control.....PCP also said Acyclovir was too dangerous to take all the time! HELP !!! Thanks...
  3. You remind me of my girlfriend. she is so kind... accepted my hsv2; the fact is that since I don't want infect her our sex is almost inexistent lately... Hope you can find peace and a balance in your relationship
  4. You seem incredibly angry and distrustful, and I don't blame you. You have clearly been through a lot and have suffered deeply. It seems like you've been carrying this around for along time, and I don't think it is serving you. It seems like you have decided to confront these issues and deal with them now, so I hope that whatever you choose to do/believe/feel helps you to find some peace. You state that you have conflicting information about whether or not you have HSV-2. I'm sure you already know that the Western Blot is a superior diagnostic test than the IgG. This means that a positive WB beats a negative IgG and a negative WB beats a positive IgG. It is more comprehensive assay. You have had 3 negative IgG tests. Unless you were only recently exposed, I don't see a point in retesting endlessly. The test looks for a protein (antibody) that is made by the immune system. If your immune system doesn't make enough of it, it won't be detected by the test. That's where the 8% "failure rate" comes from. Most people who have a negative IgG can accept that they don't have HSV-2, unless there are complicating factors. In your situation, the complicating factors appear to be that you did have symptoms and that you did (possibly) have a positive WB. It sounds like your doctor handled this situation poorly and I don't want to invalidate what you've gone through or speculate about what could have happened to your results. I think these are your options: You can choose to believe that the WB was never run. In the absence of ongoing symptoms, you can believe your IgG test results and move forward with your life. You can take the WB now and put any doubts about your status to rest You can contact UW directly and see if they still have your results on file. I'm not sure how things are handled, but because they do a lot of research in herpes testing, they may still have this data. I don't know of any doctors in Chicago because I am not from there. I do know that Chicago is a big city and you should be able to find a doctor who is willing to work with you on getting this test. However, if they're not used to ordering it, simply calling around and asking about this is probably not going to be the best strategy. Most doctors offices won't be readily equipped to collect a sample for this test. They need certain tubes and instructions for processing. You can contact UW directly and have them send you a kit that will provide everything that is needed. You can also ask for guidance on what to ask doctors' offices when you call around to find someone who will order the test. The facility you go to will need a lab that can spin down the blood - this (and the doctor's willingness to work with you) is really important. Links/Resources for you: Contact info for UW: https://depts.washington.edu/uwviro/order/ The publication that discusses IgG vs. Western Blot is here: https://www.ncbi.nlm.nih.gov/pubmed/28876290 Information on Western Blot accuracy is here: http://depts.washington.edu/uwviro/herpes-serologies/ (click on "Herpes Simplex Types 1 and 2 by Western Blot")
  5. I have to be honest, I am really struggling on accepting the fact that I will have HSV2 for the rest of my life. I am on a constant emotional roller coaster and I don’t feel like anyone understands. My anger towards the man that gave this to me is only getting worse. I trusted him. I forgave him. And then I find myself alone and watching as this guy goes through multiple girls that, like me, trust him and have no idea of what he is capable of. I feel foolish for falling for this narcissist. I feel defeated. And I feel unworthy. I have a daughter that I stay strong for but she is the ONLY reason I am able to keep a smile on my face and keep pushing through. I left an alcoholic husband to better my life and my daughters life. I dated ONE guy afterwards who made me feel like I hit the jackpot. He was charming, attentive, motivating, supportive and seemed to want all the things I wanted in life. He gave me HSV2 and then left me to handle it on my own. Yet he’s just going around enjoying life and pretending he doesn’t have it. I can’t wrap my head around how someone could do this to another person.
  6. Here is my story. I had contracted herpes (HSVII/genital) in 2012 from a partner who *claims* he didn't know. I was naturally devastated, but luckily had been on road trip with said partner, and honestly being away from home distracted me from the bizarreness of it all, at least temporarily. I could be distracted with all the adventures that we had planned for the trip. And surprisingly this partner was totally not freaked out by this new diagnosis, let alone current symptoms/outbreak. Over the years I had managed to disclose successfully to a handful of different partners. Most of them came around and we had full-fledged relationships, ending for other reasons, but mostly on good/decent terms. However, in September of 2018 I had met this one guy and failed to disclose to him. He was everything (I thought) I wanted and thus I was greatly ashamed & intimidated about disclosing. Then, what I will call "the perfect storm" happened and I failed to disclose before sex. I'll skip the details about that here. But I do have another post where I got into trouble with him being angry from having told him after the fact. Fast forward to about 6 months later. I had been working hard, and even enrolled in courses to propel my career, just hoping to redeem myself and help build greater self-confidence in order to prevent the weakness I had experience previously. Having started to feel stronger and better about myself, I put myself out on a dating website. I had so much interest and quickly met a great guy that I started to build a connection with. I thought I would have the courage to tell someone within the first few dates, but it started getting close to six dates, and I was growing increasingly anxious. After I had made the terrible mistake with the previous guy, I was sure I would have the confidence to tell just about anyone, but that seemed to have faded, and I struggled all over again with shame and (lack of) self-confidence. One night we had a miscommunication that upset me, and he was so apologetic and sincere, that it became clear to me that this man was dedicated, so I thought F-it! If he's so dedicated there's one quick way to be sure. Also, in the weeks leading up to this, I had run it through my head that I could approach with the mentality/attitude that *he* needs to be okay with this if we are going to progress. And by that I meant it's *his* responsibility to be cool with this (not mine). I finally got myself to a point where I don't feel like I need to take full responsibility for someone accepting something about me that I cannot change and that I didn't really get the decision to. I no longer need to take responsibility for whether someone else can make a reasonable rational decision based on facts, and that me already knowing, sharing/disclosing, and protecting myself (& my partner) is a lot LESS riskier than had he continued dating so many other people, many of which could have it and not know it or not be able/willing to disclose in advance properly. So that night I texted him to get his butt over to my place and that we needed to have a talk. He hurried over and was scared that he had done something wrong. I quickly reassured him that wasn't the case. We walked over to a cute little suspension bridge in my neighborhood, where we could have privacy from neighbors, and then I managed to cough up the news like hairball (awkwardly). He immediately stopped me and told me that even though he hasn't dated many people, it wasn't the first time he had a relationship with someone who had this. He barely let me finish and then hugged me and reassured me. Then we continued walking the neighborhood and he took that as an opportunity to bring a few other important topics to the table, nothing related to this site. I felt amazing, redeemed & relieved, and finally proud of myself. I hope this lil story helps at least one person. If you have any questions, please feel free to ask. Oh, and no judgements from me if you are struggling or fail to disclose. I'm here to do my best to educate & encourage so you don't continue making these mistakes.
  7. Here's my follow up to this experience: The guy's emotions were changing back and forth. I felt like I was at his mercy, after he threatened me with legal and criminal action. He'd go from total and seemingly genuine forgiveness, to paranoia, and back to threats again. After doing everything I could to placate him, I finally stood up to his anger and told him to "get a grip" and that there was nothing else to do but wait (for results so many months later). He cursed me out and then I finally blocked him. Many people had advised me to much earlier on, but I didn't want to shut the door on him until he got results months later, but I had really had enough. I kept my his email address unblocked and he knew where I worked and lived so he could've contacted me either of those ways. However, it's been over 6 months and I have not heard from him since. From his social media posts, it appears he's mostly well. Even though some would say his reaction was over the top, and wound up pushing me away, it was one of the toughest lessons of my life. I am still giving myself credit for coming clean, even if after the fact. I hated reading stories of people who had waited sometimes a decade or more before disclosing. I could not live with that guilt that long. I am going to write up an experience where I did recently successfully disclose, so I encourage you to read that, especially if you're struggling with disclosing.
  8. Last week
  9. oh and I want to add how he was so happy to come to my work to show me his clean bill of health minus being tested for hsv 1 & 2 so who really knows if he has it or not.
  10. I feel strange now if I find someone attractive, like once they find out they would be horrified. so I haven't dated in the two years of knowing. I did disclose to my sons dad and he is fine with it and wants to try again but he is in a sober living house and I think its way too soon, he was just homeless and has nothing
  11. Well, with the attitude this doctor had I actually wouldn't be surprised if she never actually gave me the test. I mean why would she simply "report" a result and not show me anything on paper at all for my "gold standard" Western Blot test- but go ahead and show me papers for the other tests, those many years ago when I was in her office as a patient? And even if I had a Western Blot again now- if it did come back positive that doesn't mean I had it back then, it could mean I got it after that test. Agin though, this doctor's attitude was just not right and I really wouldn't put it past her. And if someone is going to tell me something as life impacting as I have hsv2- they better send me home with papers in my hand. Or be able to produce those records later. I don't care how long it is! And ultimately she didn't cop to losing my results- she just denied ever giving me the test. And there was SO much shuffling me around- it was super shady- I actually asked to just get another Western Blot and she put me on hold, then just said I had to talk to someone in the lab, and then when I got someone in the lab they fast talked me a bunch of stuff that had nothing to do with me actually having another test- just really fast talking me- then tol dme I had to talk to someone else andthen ultimate;y just left me on hold forever until I gave up and I never had another test. And this was all TWO whole years after trying to get my papers! And being put off, and put pff and put off. It has all taken a great mental and emotional toll on me and also, because I have the good fortune to already have hsv 1 and have had low risk hpv, I have several permanent std's so I have had to carry this burden since I was young and never got to be in a good, long term relationship. It's one thing to have to say "I have herpes" but when you have to say "I have both types of herpes AND hpv and I had the warts kind of hpv... well, I am living proof of how hard and lonely your life will be. I am finally married and it's to someone who doesn't even treat me right really, but I have to date based on who will accept my std's. It's soul crushing I can't lie. I suppose that's another topic though. Also a few more questions- as for the hsv 2 test not deteecting it 8 % of the time- do you mean that 8 percent of people will just never test positive for it even though they have it? or that there is an error with the test 8% of the time? Because I can't have fallen into the 8 percent THREE whole times! Also, what are your sources for this info and can you show me them here? Another question- O have called and called al over (a few years back) asking for a Western Blot test and most people have no idea what I am talking about. Not my gp not anyone. It doesn't seem to be available here. SO, does anyone know a doctor in Chicago who will 1) know what I am talking about when I say "Western Blot Test" and 2) do the test? Please don't direct me to Terri West. She has been invalidating towards me and frankly, rude in the past- after she had my money.
  12. Thank you both @tiredandlonely and @100918 for your encouraging words and stories . I just recently got diagnosed last week and every waking moment I’m trying to push thoughts, possibilities, and different situations out of my mind . I’m sure this will overwhelm me for some time seeing as it’s so fresh. I’m just literally trying to make it through each day. Thank you both again for giving this thread some positivity.
  13. The Western Blot looks for all antibodies/proteins associated with HSV-2, not just IgG. The IgG test can miss HSV-2 if your IgG levels are low, but since a Western Blot checks everything, it's less likely to miss an infection. Western Blot is over 99% accurate for HSV-2. IgG is about 92% accurate. 17 years is a long time and it is possible that the results were filed incorrectly/not stored properly; especially with the switch to electronic medical records over that time period. Likely all records were scanned in, and they might have missed this. I would be really skeptical that the test wasn't performed at all because you paid for it and your doctor reported a result to you. IgG misses about 8% of HSV-2 cases. It's possible that your body just doesn't produce enough IgG antibodies to be detectable on the test. If you're in this 8% of people who don't test positive on IgG, it wouldn't matter how many tests you have; your body isn't producing those antibodies so they won't be detected. I'm really sorry you're in this situation because it must be so frustrating and confusing. I think you have a choice to make: you can believe the negative IgG test, which is 92% accurate, or you can repeat the Western Blot through a more reliable healthcare provider. If I were in your position, I'd probably just go ahead and get the Western Blot again because I would want to know. I think it's a waste of time to continue with the IgG testing. If the WB is negative, you can move forward knowing you don't have HSV-2 and that your doctor 17 years ago made a mistake. However, you can also believe the negative IgG test, with 92% certainty. I don't think anyone would fault you for this.
  14. Definitely don't lower your standards. No, not everyone is going to be okay with HSV, but a lot of people will. I agree with 100918; I raised my standards and was more selective after I got HSV-2. I didn't want to be vulnerable with just anyone. Before I had HSV-2, I was really guarded in relationships (this is because of a really bad experience with breaking off an engagement when I was younger). I had a lot of 6 month-ish relationships that ended because we never really became close and our time just kind of ran out. I didn't want to be vulnerable and I didn't share myself with those guys because I was terrified they would hurt me. After I got HSV-2 and realized I had to disclose to people, I spent a lot of time looking inward to remind myself of why I was so valuable and worth loving. it was terrifying to me to open up and share that I had HSV-2, but when I did and was accepted, I felt connected to the guys and accepted in a way I never had before. It was really uplifting and it helped me to share more of myself in general. It did result in more heartbreak for me because when you create a stronger connection and stronger bond, it hurts more when the relationship ends. But through this process, I found my husband. He is HSV-2 negative and we do everything sex-wise that I did before HSV-2. I'm honestly not sure if I would have found my husband (who is the best man I know) and connected with him the way I did if I didn't have HSV-2.
  15. It's not that HSV is so rare that it is misunderstood. It is that it is very common and most people don't have symptoms so it's not considered a major health issue. Many doctors depend on outdated information, and not all of them fully understand the implications of the IgG testing. You may want to do a little bit of research/call around and see if you can find a doctor who has experience with herpes. This isn't totally accurate; the immune system is more complicated, and it creates a lot of different antibodies to HSV-2. The IgG test looks for one specific type of antibody and most people who have HSV-2 will have a lot of this antibody circulating in their system. It is possible that you have HSV-2 and that the other antibodies to HSV-2 (the ones that would be detected on a WB) are keeping the virus in check. Everyone's immune system is different, so yours might just be more efficient at making other antibodies. You also may not have HSV-2, and something else may be cross-reacting with the IgG test causing a slightly-higher-than-negative value. I don't think that you got a rarer strain. I think that if you have herpes, your body is dealing with it in a unique way, so your symptoms are not textbook. I also think it's possible that you got something that is not herpes. Honestly, if you have herpes, your symptoms sound mild even without antivirals. I would encourage you to give them a shot and see if they can help. When the symptoms are under control, it can really help with the mental acceptance piece. But also, it's important to determine if this is herpes or not. Because if it's not herpes, you need to figure out what it is so that it can be addressed and treated. There are lots of things that can cause itching/irritation in the genital area. Have you tried antibiotics or antifungals (metronidazole is a good one - it is a prescription in the US). After I got herpes, everything was out of whack down there, and because the pH was off and there was inflammation, I ended up getting a pretty bad bacterial infection. I spent months thinking it was herpes, but it wasn't. I'm a woman, so obviously my parts are different, but it's possible that something happened in your experience that caused things to be off balance down there, and resulted in inflammation. I think it is possible to get this under control and to reduce/eliminate your symptoms. You just need to find a doctor who can work with you to figure out what's going on down there. Sometimes it takes trying a couple of medications to see what does the trick. As far as I know, the WB test is only available through the University of Washington. You can contact them directly to have them send you a kit. You will need to find a healthcare provider who can order the test and process/spin the blood properly and then ship it to UW. I know that they have done tests for people in Europe before, so it is possible, but it may be a little extra work. For the record, I have no affiliation with UW, and I really don't think the WB is necessary for most people because the HSV-2 IgG is a pretty strong test (I have a positive IgG and it correlated with my symptoms, so I never got a WB myself). But you are in a more unusual situation since you've had several equivocal tests. If you find out that your IgG index values were positive and above 3.5, then you can be pretty certain your positive and move forward with trying antivirals if you want to (I'd encourage it because it really improved my quality of life, but I know they're not for everyone). But I'm skeptical that your positive index values were above 3.5 given your testing history. I really hope you get to the bottom of this because I know how frustrating it is to not have answers. FWIW if this is herpes, it is really, really not the end of the world. I have had it for over 5 years and I haven't had an outbreak or any symptoms since I started antivirals. It impacted my sex life in the beginning, but it doesn't anymore. It's a total non-issue. So, basically what I'm trying to say is that no matter what this is, it's going to be okay.
  16. @100918 can I just say how awesome you are. You literally have changed my whole attitude about myself this weekend and you have no idea how valuable that is so thank you!! @Teach28 hang in there, I’m confident this will get easier and will be one of the least of your concerns in life.
  17. I RAISED my standards. When I was diagnosed, I was dating someone who was decent. Not everything I envisioned, so in a way, he was already not what I fully wanted, but he was nice. It was more of the superficial things that he didn't meet...like height, education level, made less than I do...so I looked past that. But when I disclosed and he rejected me (even though only for about a week), I decided that I deserve better. I set my standards higher than I ever had before, and ended up meeting someone who exceeds even those standards. And he accepts me and my diagnosis with no issues at all. He is also the kindest man I have ever dated and makes me feel like a princess. Do NOT lower your standards. HSV does not make you a lesser person. Do not accept a lesser person as a partner. KNOW YOUR VALUE and demand that someone meets the standards that show that they know your value and their value. You may need to take time to work on self-love for a bit because you attract what you put out into the world. So, if you are putting out the vibe that you do not value yourself or feel there is something "wrong" with you, you will attract someone who does not value you and will see this as a something wrong with you. When you put out the vibe that you are amazing and worthy of the very best, that is what you will attract...you may still attract some toads, too...but you will also attract quality men. Weed through and toss the toads.
  18. So you're around my age. I am 40 and my boyfriend is 44. That is ironic about the guy not seeing HSV1 as still being HSV. But, I have seen a LOT of people, mostly on FB, who openly are like, "Yeah, I have cold sores but it's not the same thing". Ummm, it can still be spread and can be spread to the genitals, so yeah, it's kinda the same thing at this point. Maybe back in the day when oral was something that only the "promiscuous" people did instead of just about everyone having sex, but now? This guy is old enough to know better. The fact that he hasn't bothered to research the strain that he has tells me that he just likes to be uneducated about it. You're better off moving on. Have faith...you will find someone who is not put off by it. A lot of us here have, and there are more guys out there who are educated and will see you for you and not for some stupid virus.
  19. Thanks Tired, the thing that terrifies me is that all the info you're giving me - and in part I gathered from web too, - were never suggested by one of the many dermatologists I consulted. This is disappointing and also alarming, I live in a medium sized european town (but also visited a doctor from a near bigger city...) makes me wonder that HSV is still too rare or too underconsidered. Btw, I will surely check again where got the numeric IGG index, I was a bit pissed to retest there 'cause considered them least reliable than the one at hospital (since they wrote me "positive" without doubt), but want do it again. I also found strange that my IGG count is weak... in logic, if my body doesn't produce much antibodies, wouldn't I have more visible/painful H effects? Though someone told me that H antibodies are not EVERYTHING in keeping H quiet. What is your opinion? And now to the worst part. I don't hope for miracles of course, since I know that it happened, the now and then itch is something I never had in my life and above all my glans is not "normal" as before. So I know that I got something, I am more inclined to think that got a rarer strain with less visible effects. Thanks again, will also find if and where can take a wb test.
  20. Thank you for the feedback! I have been extremely depressed about the possibility of doing so since I'm not sure if the infection is new or not. I developed a yeast infection which I had not experienced in a long time and I was having tingling in my thigh, and lower back pain. I thought that maybe these things were happening because of auto inoculation. I have never had oral or vaginal sex so I'm assuming this infection is oral. Question: 1. What should I tell a potential partner? I carry the virus but I am not 100% sure whether its oral or genital? Should I even bring it up before we kiss? Have sex? I have never had any type of lesion anywhere.
  21. So you have had no "positive" test where they provided you with an actual IgG value? Given that it has been over a year and you have never taken antivirals, I would consider the Western Blot. It's more expensive, but in your situation I think it will give you much needed information. If you are unwilling to do that, I would at least encourage you to do another IgG at a place where they will give you the index value. If your positive value has been below 3.5, which I would suspect is the case, since you've had equivocal results on several tests, then it would need to be confirmed with Western Blot anyway. IgG would be expected to increase over a period of months after initial infection, but once you reach the positive range, it shouldn't go back down to the equivocal range. It's possible you are positive and your body just doesn't have as much IgG antibodies HSV-2 as other types (which is why the Western Blot is more accurate; it looks for all proteins/antibodies to HSV-2 and not just IgG), but it's also possible that you don't have HSV-2. If you've ever had mono or chicken pox, those antibodies could potentially cross react with the IgG test, resulting in an equivocal or low positive score. Also, HSV-1 being negative doesn't mean as much as you might think. The IgG for HSV-1 misses up to 30% of infections (the IgG for HSV-2 is more sensitive). Also, if you do have HSV-2, regarding antivirals, it's worth trying them to see if you even do have side effects. If you have side effects, then you can always stop. These drugs are generally very well tolerated and have been around for decades. If you are having sex and you and your partner are concerned about potential transmission, then it doesn't matter if your symptoms are bearable or not; you would want them so that viral shedding and the risk of transmission is reduced.
  22. @tiredandlonely, the index values is the thing that is torturing me. I used different clinics... the only one where I got the "POSITIVE" status was at the hospital where the DON'T give values!!! Probably you didn't see my log of tests, I post you here: One month and half after exposure Blood test seeking HSV2 IGG, result: 0.50 (still negative). 14 weeks after exposure Blood test HSV2 IGG, result: value 1 (equivocal). 6 months after exposure Third blood test seeking HSV2 IGG, result: positive (hospital, not same structure from previous test. no value was given). 9 months after exposure Fourth blood test seeking HSV2 IGG, result: 0.90 (that is the “highest” number in negative range, weird ’cause it seems lower than previous tests). One year after exposure A fifth (and last test for now) at the same hospital (of third test) confirmed the positive HSV2 IGG status. Every test - also included HSV1 IGG, - always negative. The reason why didn't try antivirals yet is a mix of fear of side effects and probably 'cause my outbreaks (given that the mild tingling and spots on thighs means an ob) were very bearable. But... I also have fear of give H to my gf, so think must start at least to help mentally to have sex worrying a bit less. Girlfriend tested few months after my infections and was luckily still negative, I am begging her to test again now, will happen in next month hope.
  23. I get nervous right now thinking about dating . However, I definitely agree. I feel my pool will be lower and I will have to lower my standards . I’ve also read a lot of success stories up here but I am still in a place where I feel it’s not going to happen for me.
  24. I feel like my dating pool has been significantly reduced since not everyone will be ok with HSV. Do you feel you have to lower your standards to be accepted?
  25. Thank you for your response and thank you for replying to a lot of the posts from people, it really makes me feel better. I’m older at 45 and this guy is 47. The funny thing is he has HSV1 and knows a lot about both strains but views type 1 oral as no big deal (he didn’t disclose it to me) but type 2 is the plague which is how I think most people view it. Rejection is tough and it’s just disheartening to know I have a future of these disclosures and rejection until I find someone accepting, if ever.
  26. Hey I use immune boosting tinctures. Avoid stress. Healthy diet. Valacyclovir (not "natural" but does the trick and saves you emotionally and mentally).
  27. I'm sorry that he had that reaction. It could have been a knee-jerk reaction and he may come around after he has some time to digest what you told him and does some research. If he doesn't, then you really are better off without him. Not sure if you saw my story, but when I was first diagnosed, I had just started seeing someone (was during STD testing I had done before gettting intimate - I was insisting he get tested, so I went to get tested as well...only fair, right?), and I disclosed to him as soon as I found out. He had a similar reaction, but didn't tell me to go date my own kind (which is actually a total dick move, tbh). He ended things. I was very upset because things had been going well. However, about a week or so later, he came around and decided that he wanted to be with me anyway. At that point, I turned HIM down because I realized that I deserved better than someone who would say hurtful things in a moment when I was being completely vulnerable with him. About 3 1/2 months later, I met my boyfriend. When I disclosed to him a couple weeks later, he was 100% accepting, had no issue with it at all, and basically told me that it was nothing as far as he was concerned. It's been almost 5 months, and we are still together and very happy. The way I look at it, you can never find happiness if you don't put yourself out there and risk getting hurt. And finding someone who will love you unconditionally is worth the hurt along the way. Can I ask how old you are? And how old the men are that you're dating? That could be a contributing factor to the reactions you are getting. Also, set your standards high. You deserve someone amazing, not just settling for someone you think will be good enough. Chin up! Allow yourself the time to be upset, and then pick yourself up and brush yourself off.
  1. Load more activity
×
×
  • Create New...