My doc wont help, please advise

[gnitruh]

OK I'm going out of my mind trying to find answers!! I have no intention of having sex again for a LONG LONG LONG time! I know I wont be able to trust anyone enough to disclose my condition to them. Therefore I will not put myself (or them) in that postion. HOWEVER. I am feeling like I can never kiss anyone again because I have HSV 1. My problem is I dont know if it is oral or genital (I also have HSV2) I posted this question in another forum but am still not getting answers I need (although the response is apprectiated) I have a copy of my results but how can I tell if my HSV 1 is indeed oral? I have never had a cold sore, but I do get little bumps inside my gums (like salt blisters).

I've accepted the fact that I will never have sex again and can deal with that. But I want to know if I should be afraid to kiss someone too? I tried to get my doctor to answer some questions for me and was told to make an appointment, JUST TO ASK HIM A QUESTION! earliest one being middle May!! Great medical care!!! I really like someone that I've been talking too and would really love to kiss him, but I dont want to infect him. I know this sounds childish, but I am refraining from sex at age 36.....I at least want to kiss again!

[Caliope]

If I couldn't kiss my guy I would be devastated. Sadly I can't answer your question - What kind of blood testing did you have?

[gnitruh]

I had a type specific test done and got IgG and IgM values that both state pos for 1 and 2. I will be devestated if I cant kiss again either. I think my answer may be just to join a HSV dating site (when I'm ready which I am not now) that way I can be in the same boat as someone. I just feel like we (people with HSV) have been thrown into a corner like plagued people and forced to only live amongst ourselves.

[Caliope]

I think that there has to be a way to confirm where the infection is. Can they do a bucol swab or have you had actual blisters/lesions or ulcers that can be swabbed and then get a better idea of the scope of the infection.

What you describe in your mouth doesn't fit any description I've read of oral herpes but I obviously am not a dr or expert. Perhaps a dentist could tell you more about oral herpes infections?

I don't know your story but did you get tested because you had blisters show up? For me I suspected I had something but swab tests were negative several times (timing) they did not offer a blood test but once I had an ob w/visible blisters the swab was positive for hsv2 genitally.

[gnitruh]

I got tested because of some strange irritation down below. My friend had contracted HSV from a guy who's roomate I was dating (confusing?) I didnt suspect anything, because I took him at his word that he was clean and didnt mess around like his roomate did (yeah stupid I know, the heart messes with your mind) We had protected sex all but 1 TIME..lol, of course it only takes that 1 TIME (again stupid I know) anyway, I decided to get tested for piece of mind and got complete terror and anxiety in return.

I read on another post that there is a HSV Hotline 919-361-8488. I havent tried calling yet, but I definately will. Hopefully I can clear up some things.

[Caliope]

I would want more details. I hope you follow up I think it would be good to know exactly what you are dealing with instead of wondering and worrying and all that goes with it.

I am so glad that my last swab test told me the truth. Of course I will probably never know where this came from.

You were smart to get tested even though the results weren't nice to hear. I wish that I knew back then what I know now and I wouldn't be constantly wondering if I could be responsible for hurting someone else like I've been hurt.

I'm here if you need support.

[gnitruh]

I appreciate your support caliope. The same offer applies to you if you need to talk.

Take care.

[Healing]

I would call your doc's office back and insist to have someone-even if it's the nurse-explain your test results and answer any questions. If you were seen there and given results, you have the right to have them explained to you. Be persistent and firm!

[gnitruh]

I can appreciate that and I know I should be persitant with them, however I work in the medical field (and close by where my Dr's office is) and I don't want to talk to anyone but the doc about my HSV for fear of a receptionist or assistant knowing and unprofessionally leaking my condition to others. I've seen it happen. We all trust that every medical professional is sworn to and upholds the oath of patient privacy but sadly it doesnt happen.

[Healing]

Yes, I know it happens as I am also in the health field. So much for confidentiality. I want to share that I have gotten a 2nd opinion on my results. The first doc quickly shoved me out the door after an exam in a matter of about 10 mins. So I was lucky to find one who actually took a pen and paper and drew everything out as he explained it to me. So, here is what I can share with you and everyone else with a similar issue. I also got a positive for HSV 1 and 2. I asked the same question about kissing. He said that just about everyone would test positive for HSV 1 because most of us have had fever blisters before and therefore we carry the antibodies. My outbreak was genital and therefore that is the HSV 2. My culture from the swab specified also that it was HSV 2. As far as the kissing, of course you can kiss but not if you have a fever blister then it is contagious. If you have an outbreak, also very contagious. The unfortunate truth of HSV 2 is that you are always contagious except for about 1% of the time when you are not shedding. You are more suseptible(sp?) if you are stressed and have a poor immune system. Hope that helps some. Oh, and he also said that there was a herpes vaccine that would eventually be on the market-not soon enough, however. Don't give up! You know I think some of the smartest women are sooo STUPID when it comes to men. Trust me, I am feeling very much the same. If it helps any, I can also add that my doctor really convinced me as to just how very common herpes is. You would be surprised how many people have it and so many who do have it and don't know since this virus can lie dormant for many years.

[gnitruh]

Healing, thank you so much for taking the time to share your Dr's info with me, that does help alot! One thing I was curious about though, did he explain the difference between a fever blister and an outbreak? I never get anything on the outside of my mouth/ lips however I do get ulser like sores inside my mouth, almost like what you get from eating very spicy or salty foods. Im wondering if that is an actual break out.

This stuff is so confusing. Yeah, the vaccine would have been great a long time ago, but hopefully they can figure it out to save others from this CRAP!! I guess we are at least lucky in that there is suppressive therapy right? It can always be worse ya know. Bright side to everything.

Well, again thanks for your responses, you've been a great help, and let me know if you have any info on fever blister vs oubreak. take care

[tothefuture]

Healing; The unfortunate truth of HSV 2 is that you are always contagious except for about 1% of the time when you are not shedding.

Oh my god Healing where did you get this info from. How scarey is that . You are thankfully not correct;

In people who get recurrences, asymptomatic shedding occurs on average for 2 per cent of the time for people with type 2 infection and 0.7per cent of the time for those with type 1.

The fewer recurrences a person has, the less chance there is of asymptomatic shedding.

Asymptomatic shedding tends to diminish over the years. It is more likely to be happening in the first year and much less probable after that.

Taken from the HSV website.

[Healing]

Dear tothefuture, That kind of thinking is exactly the way I got herpes. My ex had a relationship with a woman last yr who had been diagnosed 10 yrs ago and had not had an outbreak in many yrs. This, I learned as we were breaking up . I was furious that he did not tell me this so that I could make an informed decision as to having sex with him or not. He was told by a doctor that it was very unlikley that he would get the virus from her because she was likely not shedding after having it for so many yrs and not having a breakout for so many yrs. He was so sure that he would not get it based on that information given that he never got tested. Here's where I come in. After being celibate for over 4 yrs, 2 mos after breaking up with him, I get my first breakout. Did it come from him, yes, extrtemely likely. As for him, could he have gotten it somewhere else other thant the girlfriend that was diagnosed? Yes, not likely however. So, although I was hoping to believe your kind of information, I don't...base on personal experience. And I will add that my first doctor told me I would not be contagious if I were not having a breakout or any symptoms.......wrong again! It seems that herpes is turning out to be it's own religion where everyone has their own belief system and their's is always the right one.

[Healing]

Dear tothefuture, here is some additional information printed here by a member, Box of Rain......I hope this gives you and everyone else more factual information.

shedding occurs a certain percentage of the time when not outbreak is present... some people will argue it is only a small percentage of the time but everyone is different so there is no way to say that is true and use it as a guideline.....someone could shed 1% of the time, another person 15% of the time without an outbreak.......theres just no way to say or know. Also, you can shed and not know and not get an outbreak or signs of one anytime near when you are shedding ,.....that is why having this sucks so bad. Its like russian roulette.....as I have said before. It always being potentially contagious aspect that makes it so hard to accept. ....but that is the truth.....there are crazy statistics that show that well over half of the people infected with this were infected when their partners showed no signs or symptoms of having the virus and that is why so many people dont think they could possibly ever have this and come to find out via blood tests one random day that they have had it in their bodies and never knew. It is such an advanced virus when it comes to invading our bodies silently so often.

[Guest kwest]

shedding is weird when you think about it.. cuz most people with hsv1 dont think about the shedding factor, just people with 2.. and they both shed the same, its the same virus..

a lot of people with 1 just avoid contact when ob but then when its all good, its all good, we dont think like this, as its a scarier thing and so demonized in our society...

i'm not sayin we should be flippant about shedding, i mean, my doctor said 'use rubbers you'll be fine' i was a 99.999999999999% of the time condom user and this was that 0.000000000000000001% when i didnt have one... now to me, the real question about shedding is where...

like am i shedding on my balls, or in my piss? is it internal/external/both?

meh... i gotta get over it a little bit... i that i havent really been touchin my dick at all... condoms to masterbate, rubber gloves in the shower.. i'd almost rather just risk the shedding factor and as long as i'm not rockin a bump: fuck it

[Caliope]

shedding

kwest, to respond to your comment,

I understand that the virus attaches to cells and takes them over to replicate itself. It then hides in our nervous system when not active.

When it sheds I am imagining that it uses those nerves like little highways to the affected cellular areas and manifests there. Which would explain why most of us break out in the same spots again and again. That said if we are having an active ob with blisters or ulcers or lesions those fluids could be transmitted to new cells previously not infected.

Since skin cells die and slough off it would seem logical that those infected skin cells would also contain some of the virus which might explain the assymptomatic shedding and being able to infect someone who may have microscopic tears that could catch those cells. Wouldn't the virus want to move to new healthy cells instead of get sloughed off with the dead cells?

In the 10+ years I think I've had this it only spread out to limited nearby tissue. I didn't know I had this for sure until recently. You would have thought it would have spread everywhere since I didn't know I had it or how it spreads. All I had was itching and I probably opened the skin by scratching which explains the new location.

So logically if you have never had an ob on your testicals I would doubt that they are shedding. Same goes for your penis if you've only had an ob somewhere else such as at the base of it. I think you may be over paranoid about wearing gloves in the shower and I have read that it just isn't a good idea to have intercourse during an ob even if you are using a condom if you are male and have blisters or lesions on your penis as the condom can break the blisters and irritate you causing it to infect new healthy tissue nearby. Plus condoms will only protect a partner if it completely covers the ob and doesn't slip etc.

The idea of masterbating with the condom might aggrevate the situation because it can irritate your skin and maybe you'd be safer just doing it in the shower sans gloves etc. where you can just rinse off.

I am sure that females are more susceptible to the virus taking hold due to the nature of our anatomy and how our biology operates.

[tothefuture]

To Healing;

I have posted on here before about shedding, saying that I can't understand how 'they' can say how frequently and how long this occurs; perhaps someone with this knowledge can shed (no pun intended) some light on this.

That said, I have to get information from somewhere, so I refer to websites which I believe to be reliable, this being one of them. And this site states;

Asymptomatic virus shedding cannot be predicted but is known to occur on at least 5% of days during the year.

And as I stated in my original post, the HSV (UK) say; In people who get recurrences, asymptomatic shedding occurs on average for 2 per cent of the time for people with type 2 infection and 0.7per cent of the time for those with type 1.

There are many examples on here of people who have the virus and have yet to transmit it to their partners - even though they've been together for years.

I contracted it from my partner when he was having symptoms (but don't get me started on that!), and yet we'd been having sex for 2 years prior to this.

You say that; The unfortunate truth of HSV 2 is that you are always contagious except for about 1% of the time when you are not shedding.

From where did you get this information? Because if you've just deduced it from your personal experience then that hardly makes it a fact.

If I was only considering MY personal experience then I would conclude that it's only transmitted during symptoms, and that would clearly be wrong and misleading.

[Healing]

Dear tothefuture, I got that information from my doctor which is how I began this topic. I was addressing someone and gave them the info my doc had given to me. What is the big difference anyway between 1% and 2%. You got herpes when you had symptoms after sleeping with someone for 2 yrs. I got herpes from someone without symptoms after sleeping with him for 2 mos. He got it from someone who had herpes for over 10 yrs and no obs for many yrs. I wish we all had more facts about this virus but the truth is that there is so much unknown about this virus. Especially when is it transmittable? We all want to know that but it is too iffy, so I think it better to take precautions and not spread it around instead of what we want to believe. Don't you? I may seem a little "bitter" but my ex had the thinking that he had no symptoms and therefore didn't have it. Well here I sit with a sore vagina and a disease that will affect me for the rest of my life! I can't stand ignorance!

[tothefuture]

Dear Healing

What is the big difference anyway between 1% and 2%.

I have no idea to what you're referring. The point is, your doctor told you that we are always contagious.

Now if that's true, and reputable websites, including this one, change their information accordingly, and my GP and Consultant (from STD clinic) also say they're wrong and that, in truth, we are contagious all of the time, then as devastating as that would be, then I'd accept it.

But that simply isn't happening.

Maybe just take a second and ask yourself whether you could have misunderstood your doctor - I'm assuming it must have been a very stressful consultation?

Do some more research - and find out if what he said about being contagious all the time is backed up by other sources. You yourself say that; someone could shed 1% of the time, another person 15% of the time without an outbreak......., this is NOT the same as saying we are contagious all of the time.

I really am only trying to pass information over to you that's as accurate as it can be and to hopefully make you a little less stressed (although my personal opinion is that shedding even TWO PER CENT OF THE TIME is pretty much shite).

I understand why you sound bitter - me too! So I'll ignore you're implication that I'm spreading it about!!!!!!

[Healing]

Not implying at all that you are spreading it about, but scary to think that some have the thought that they are not contagious some of the time and are being careless. O.K. say we are not contagious all of the time, except for a small percent of the time, whatever that percent might be. When specifically is this time that we are not contagious? Do we know when this is? This is the most important question, would you not agree? If you know, then please shed some light! I am still doing research on this and trying to find answers. I was just diagnosed and don't want to come across as knowing it all. After all, doctors and researchers don't know it all. So again, please post your response to when exactly are we not contagious?

[Healing]

This is what I quoted that my doctor said to me:

The unfortunate truth of HSV 2 is that you are always contagious except for about 1% of the time when you are not shedding.

This does not say that we are always contagious. It states that we are not contagious a small percent of the time when not shedding. This comes from my source, my doctor. I will continue to do research on this but still waiting to know when specifically am I not contagious? How will I know???

[tothefuture]

It would be really helpful if someone else joined this because I really am trying to follow what you're saying, and I really don't mean to sound disrespectful, but I simply can't understand what points you're making, I still think you're getting the whole shedding business confused.

1. When we shed the virus then we ARE contagious.

2. We shed the virus when we have signs (sores etc), so this bit is easy - avoid intimate contact during an outbreak.

3. When we get symptoms - (pain, tingling etc), we can assume we're shedding - again, we're contagious during this time, so no intimate contact.

4. We can also shed the virus asympomatically. So no signs and no symptoms and STILL contagious. This is the difficult bit. And to answer your question, there is no way of knowing when we're shedding if we're asymptomatic.

Now for some people, if say on average people shed asymtomatiaclly 5 per cent of the time, this statisic may be helpful because the risk is fairly small. It also depends on how long you've had the virus etc so taking everything into consideration, this may help people.

For other people, 5 per cent of the time is irrelevant - any risk may not be acceptable for them.

For me, it's some consolation that I'm NOT walking around permanently contagious.

Hope that's helped??

[Caliope]

deleting post.

[tothefuture]

Hi Caliope

Thanks for your comments and I appreciate your input.

I'm just trying to get the facts across clearly to Healing - I think it IS confusing when you're learning about it for the first time.

[Healing]

Calliope, thanks for that reply and that does make things a bit clearer for me. tothefuture, you state you don't understand my point, and yes you are quite condescending in your comments. Here's my point and verified by Calliope and others. Whether one chooses to believe they are not contagious a small percent of the time or a large percent of the time, truth is, we don't know exactly. It is unique to each individual. I guess it is just how you perceive this virus or maybe how you get this virus. For myself, having contracted this from someone who had no symptoms and had been with someone last year who had the virus for 10 yrs and no ob's in 3-4 yrs, I will tend to be very cautious with believing when we are actually contagious. I am usually a very optimistic person, but now, at least with this, a realist.