New2GH

@pecan, Hi pecan, I don't think it's anyone's place to tell you how you should or should not be handling this nor should anyone be sizing up how you handle the virus versus how anyone else handles the virus. Herpes affects us all differently (both emotionally and physically) and sometimes forums such as these are the only outlet we've got. I think some people just don't want to hear such a somber reality when it comes to the virus and instead are bent on keeping things light and fluffy to suit their needs. I think you have a right to express yourself and be heard and not be made to feel like you've got issues with getting a grip. So please don't apologize. You are going through a lot and have other things you are dealing with to add to the mix (like many of us do). So as long as you are not violating this forum's guidelines then post away without apologies of any kind. Lots of people read posts on this site daily and you never know when your story can help someone else. I do hope you will be able to get the western blot issue sorted out somehow even if it means shopping around for a doctor that will listen to you and order the test. Sending you some positive vibes and just know that your story matters and that you should be able to tell it the way you want to.

@Shortcake, Hi, was the tingling constant for you? How long did you have the tingling for? Thanks!

@Ubikwity Every time I read a post or response of yours it soothes my soul. Thank you for being you and sharing your wonderful self with us 🙂.

I'm glad you brought that up because I've definitely caught her contradicting herself. My gut says I caught it within the three months preceding onset of symptoms (with my last possible exposure being four days before symptoms began). I could fall into the common scenario of having symptoms 2-10 days post last exposure but also could fall into scenario where symptoms appeared from an exposure that was almost three months old (I had several partners during that 3-month period). Prior to those three months I was celibate for about half a year without any kind of symptom. So that's why I'm thinking my infection was recent or within three months or so of diagnosis. Otherwise I've been carrying it for a very long time and it only decided to mess with me when it did. All possible scenarios. I'll never know and I don't speak to any of my past partners and (with what I know now) wouldn't trust anyone to tell me the truth anyway.

Hello @bonnie_1987, My igG index value was a 10.40 and when I asked Terri Warren if I had a recent infection she told me it was likely an older/established infection at that index value. As you know this is a common question and so Terri's answer is usually that index values such as ours are not likely to be recent infections. I hope that helps. You can check out her forum (if you haven't done so already) and read her responses to this very question from others. Take care.

@Ishmael, you know that it's not just unethical to me. IT'S UNETHICAL PERIOD! I would ask anyone else who is reading this to chime in but this is not my thread. You are advocating for non-disclosure (within a certain context) on this forum. Don't you think it's a slap in the face to other users here that were on the receiving end of non-disclosure within that context?? Really?? I guess you are saying that they should have known better? Ramble away if you must but, as I mentioned previously, I'm not taking anything that you have to say to heart.

Even if she's never had sores/an outbreak she could still be contagious through viral shedding. Why should she not disclose?? @mr_hopp, could you please chime in here? Thank you.

Hi @RainyGal, maybe you can find this sheet useful in regards to transmission. I hope all is well.

@Ishmael You have been caught red-handed and you are just trying your best to save face here. You could man up and admit that you did suggest to another user on this site (RainyGal, link to that post provided in this thread) that you would NOT disclose and instead carry on like normal if you were in her shoes (positive only for HSV 1 through blood test and never any sores anywhere). It's as clear as daylight in your response to her. Slice it any way you want. In my book this is something that is UNETHICAL and therefore leads me to question the ethics of the person who would suggest non-disclosure in this context, or any other context for that matter. She cannot know for sure if her infection is oral or genital and she is contagious either way because of viral shedding. Your response was the only response to RainyGal's thread and she may have decided to take what you said you would do in her case and run with it, putting others at risk. Could her next partner be one of the 20% that doesn't have HSV 1? Absolutely! Doesn't that 20% deserve a voice here? Heck, even if 99% had HSV 1 I would still advocate that the remaining 1% should still have a say. But maybe that's just me. ANYHOW, moving forward the whole reason I brought all this up was to convey to @benzgtx (and really anyone else for that matter) to not take to heart any advice or criticism that is coming from someone whose ethics are in question. I know I wouldn't! @benzgtxI'm sorry that your thread was hijacked. It most certainly was not my intention. But for what it's worth you are getting a lot of views!

@Ishmael, so then people that don't get cold sores don't have to tell their partners even if they know they are infected with type one via blood test?? A yes or no will suffice.

@Lelianney Wow your story breaks my heart. Herpes definitely has it out more for some than others. It definitely had it out for me and since my diagnosis almost a year ago it has been a hell of a ride. You are definitely justified and entitled to vent and be heard. I hope that someone with a more similar experience to yours will chime in with perhaps some words of encouragement for whatever that's worth. Sometimes just letting it out helps, and I hope you felt at least a little better after you clicked submit.

@Ishmael, So the message you are conveying is that it's okay for someone who has oral HSV1 to not disclose since it's common in the population?

@Ishmael As we know, a positive blood test for type one only tells us we have it but not where we have it. And as we also know it is becoming more and more common to have type one genitally. So there is no way to know for sure without sores and only a positive blood test for type one. If I didn't already know I had it genitally, I would disclose that I have it and that it could be oral or genital. I would want to protect the other 20 per cent that don't have it.

@benzgtx, Geez mister, you really ruffled some feathers with this post! But as someone who also has HSV-related neurological issues, I can totally understand your frustration and need to vent. Sometimes forums like these are the only places we are left with to do so. Honestly, I scared most people in my personal life away (longtime friends, close family) when I tried to reach out and tell them what I've been going through. It's sad, but most people are just not interested in dealing with such raw and real emotions, or dealing with anyone who is in the dumps. It's a buzz kill, it gets in the way of a good time. So it's no surprise you got some backlash. Basically people just want to conveniently water herpes down to just a "skin condition" and don't care to hear about the darker side of herpes since most people won't be as unfortunate as we both are to, not only live with the stigma, but live with HSV-related health issues as well. Perhaps sharing atypical HSV experiences scares most HSV folks unnecessarily, BUT I think it also helps them to put things into perspective (that at least they don't have the issues that we have in addition to the usual things that come with being diagnosed with HSV). I know that if I didn't have atypical symptoms I would have looked at your story in that way and been very thankful that HSV wasn't causing me so much trouble. Also, I'm sure that down the road some other poor soul who's been atypically impacted by HSV might find your thread and reach out and you can help them out through their difficult time. It is bound to happen and to me that would make your post worth it even if you aren't "offering" anything at the moment. But either way, it's clear that people want things to be kept light and fluffy in here. It's okay though, I'm here for you even if you come across as pessimistic because I understand where you are coming from. Feel free to private message me anytime, heck I"ll even give you my number if you ever want to talk. I'm here for you and for what it is worth I hope that somehow, someway your condition improves so you can get back to a normal life. That's all that I want for myself as well. PS.. As for you being called out for being pessimistic or negative just beware that some of these same people that are pointing the finger are downright condoning or partaking in non-disclosure, so I question their ethics. I'm of the mindset that when someone points a finger at someone they are pointing three back at themselves. If I had to choose between an unethical or pessimistic person, I would go for the pessimistic person any day. But that's just me 🙂.

@benzgtx, Thank you for your real, raw, and honest post about the lesser heard of yet devastating effects this virus can have on some of us. I myself have been suffering from neurological issues going back to about two weeks before diagnosis (eleven months as of yesterday and counting!). To say that the past year has been a living hell for me is an understatement. Prior to this I was a happy-go-lucky man full of life. Now I'm just a shell of the man that I was. This has affected every facet of my life. I joined this forum and Terri's forum to learn all I can about herpes but also to see if anyone had gone through the symptoms that I have. I did find a few but it took months as my herpes presentation is atypical. However most of those people were no longer active on these forums so I couldn't get a hold of most of them. Anyway, yes herpes isn't necessarily just a skin condition for some of us. I've read hundreds if not over a thousand posts at this point about herpes symptoms and if it is one thing I've learned is that all bets are off when it comes to this virus. It acts in so many different ways in different people. And yes, the psychological toll it takes is immense. If I could turn back time, I would have just remained celibate to be brutally and truthfully honest. I happen to be one of those that (because of fear of contracting an STD) didn't fully partake in all the sex that I would have liked to. And still I ended up here. My best friend spent the past two decades sticking his d*ck in any hole he can find and yet he gets to walk away unscathed!!! Shows you how f*cked up and grossly unfair this world is! Had I known that someone performing oral on me could cause infection even without sores I wouldn't be in this lifelong boat that's I'm in now. I get that we should be here to uplift and put things into perspective. But it's also important to know herpes for what it is: a lifelong, incurable viral infection of the nerves/nervous system. As such, neurological issues are possible/plausible. Anyhow, I'll continue to hope for the best for both our situations. And yes, in case anyone wonders, I've been to a bunch of doctors and specialists and gotten a bunch of stuff done (numerous labs, MRI, nerve study, etc.) to rule out other possible causes to no avail. I am otherwise a healthy person that leads a very healthy lifestyle.

@Stupida, Obvious question here but are you taking antivirals? I've read they could be the culprit and I can definitely say that I started taking Acyclovir daily about three months ago and within a few weeks I noticed it was thinning my hair out. If not the antivirals then not sure if it is the actual herpes. TBH I haven't read anyone reporting hair loss b/c of HSV alone but it seems anything is possible with this darn virus. We'll see if anyone else chimes in here..

@Disgusted, I hope people chime in here. I think it is important that for those that are considering (or have already gone) the non-disclosure route to understand the effect it has on people such as yourself and many others that were not given a choice. Seems that lately people are trying their hardest to justify not disclosing and even hoping that others will root them on. I may or may not have been infected by someone who knew, but the more I read posts here, the more I think how likely that could be the case. You are definitely justified and entitled to feel the way that you feel. Hopefully someone has some good advice on how to deal 🙂.

@bird, thank you for sharing your experience with this forum. I think it is really important to understand the consequences of non-disclosure. Lately there seems to be more posts here about disclosure vs non-disclosure. I hope the one's that are considering the non-disclosure route get something out of your story.

I 100% agree with @100918, everyone deserves the right to know ahead of time and to decide for themselves if they want to risk it or not. Also, I would never go back to a doctor that would advise me not to disclose. That's unethical advice and therefore an unethical doctor.

Depending on when lesions first appeared, you may not have had enough time pass for antibodies to show up in a blood test. If they did the IGM then you need to request the IGG. If they did do the IGG you need to know that it misses 30% of type one infections and 8% of type two infections. In your case, since you are having a visible outbreak, they would have needed to swab you down there and test and type it to know for sure. Did they do a swab?? Or just blood? IGM or IGG?

If you end up going for the Western Blot you can get it through Terri Warren; however, she has her own fee in addition to the test fee. Or you can work with your provider to order it. Either way your blood gets shipped to the University of Washington for processing as it is the only place that does the Western Blot. You can check out its website as well for more information about it. Just FYI if you pursue this route.

From what I've read yes, false negative 30% and 8% with IGG. Also there's a lot of conflicting information out there about herpes in general. If you keep reading about herpes online you'll eventually feel like you are going around in circles. This site is good for information, and you can also google Terri Warren (if you haven't done so already) and check out her website which lots of people use. Honestly that's where I learned a lot about herpes and testing in particular. Getting the Western Blot is costly and involves some leg work, but gives you a definitive result.

Keep in mind that the IGG misses 30% of type one infections and 8% of type two infections. If you happen to be positive from five years ago you may have fallen into those percentages therefore giving you a false negative back then. Also, if you test false negative the first time around you are likely to always test false negative subsequently (based on current IGG testing). Only way to know with most certainty if you have herpes, and are only testing by blood, is to obtain a Western Blot. Otherwise you would want to get a swab of anything that looks suspicious for herpes since you indicate you aren't getting actual sores. And yes, it is possible not to pass herpes along to a partner for years.

@22&Depressed What if they bring it up later though? I mean, if they do their homework about HSV1 after you tell them, it would only be a matter of time before they ask you to clarify whether it is oral or genital. And then what? Even if it would not have been a big deal to them from the beginning that the HSV1 was genital (had you told them) you run the risk of them scramming because of trust issues instead. And if they happen to never bring it up, you will have that lingering thought in the back of your mind that you withheld some information from them. Do you really want to be with someone with that in the back of your mind??

@Dreamer07, Hi there, I learned that a higher index value means an older/established infection through Terri Warren's forum (westoverheights.com). That question comes up a lot, and so I kept seeing her response to it over and over. My IGG result was a 10.40 and she told me my infection wasn't recent but rather that I'd had it for a while, possibly for many years apparently. As for the culture question, as long as they ''type'' it then you should know if it's 1 or 2. That's also something I learned from Terri. Perhaps you can ask your doctor to see if they ordered the type as well for your swab, that way you know for sure which type you have down there.