Met with The Infectious Disease Specialist

[hippyherpy]

Had a consultation and there was told some interesting things. Here they are:

 

 

The ID doctor, someone who knows HSV for decades, told me that the risk of transmitting HSV if you are using daily Valtrex and condoms is less than 1%. This is lower than the 2.5% we talk about here.

 

The specialist told me that the rates of passing genital HSV 2 to the mouth via oral sex is actually a lot larger than what we talk about here (1% cases) and suggested it was more like 20/80. Also said that if you use daily meds, it goes down to about 1% risk of transmission.

 

Yes you are more infectious in the first year, but if you take Valtrex daily, that gets reduced greatly. So, the first year thing doesn't really matter if you are taking meds.

 

I was also told that the Lysine/Argenine thing doesn't really have any basis in science, and that different people can tell what their triggers are.

 

Sunlight is OK as long as it's not something like going sun bathing for six hours or whatever.

 

There is less of risk of transmission from someone who has GHSV2 who is taking meds daily, and using condoms, than random sex with someone who doesn't know their status at all.

 

It's very hard to get HSV 2 on your eyes from your hands if you touch your infected genitals.

 

 

 

 

[WCSDancer2010]

Well, I *mostly* agree although the ID Dr is not taking into account that *some* people don't respond well to the anti-virals, so *how* infectious someone is in the first year can vary a lot for some people...

 

And there are all kinds of stats about Herpes and there's *some* disagreement about some of the numbers but we are still in the ballpark.... our data here is either from data from well known sources (CDC, etc) or Dr Peter Leone who specializes in studying Herpes and who is called upon my the NYT and other publications for all their H info. I am prone to believe the numbers of the person closest to the front lines so I'm sticking with what Dr Leone tells us...but really, the data isn't *that* far apart...

 

And many Dr's don't believe in the L Lysine supplements, but we have had people on here who tried it and stopped their OB's dead so I tend to go with what I hear from people who are also in the trenches :)

 

Otherwise, not a lot we don't know here.... just minor differences of opinion here and there :)

[hippyherpy]

Is not the being an Infectious Disease specialist being in the trenches. He told me the best research on herpes is coming out of Seattle and a lot has been done in Africa where they have a lot of genital ulcers.

 

My point is that when I disclose, I can say less than 1% or almost 100% chance that they won't get it. This is a lot better than 1/40 chance.

 

He agreed that you have to just tell the person that "I have herpes" I think that's ok. There needs to be a way to build into the conversation instead of just dropping a bomb.. like ramp up to the disclosure. Maybe try to get a better sense of what your partner knows about herpes before dropping "I have herpes" because so many people do not really understand what herpes is about.

[WCSDancer2010]

Yes - with condoms and the meds the risk is under 1% ... that is legit and honest. And yes, you can ask them what they know about it ... there's many ways to bring it up ... I posted one idea on your other post. The Success Stories on here are FULL of approaches ... each partnership will likely take a different approach so it's good to read how others have broached it with their partners.

 

As for the ID being in the trenches... well *most* of their work is to do with the more "serious" ID's .... Lyme, Rocky Mtn Spotted Tick Fever, Ebola, Tubuculosis, etc so I have seen some seriously inaccurate stuff come out of the ID's because they focus on the really serious stuff ;)

[NothingGoodGetsAway]

I think that's the right way to go - I would say, you know what NEVER happens (until either the act is over, or literally about to get started)? An actual talk about STI status! I would say that's a good point in -

 

hey, before we get down to business, I want to talk about our status and how we can be safe tonight. When was the last time you were tested (she answers). Then you can say "that's great. I was recently tested as well, and was clear of everything except for hsv-2, which I've had for xx time. Do you know much about herpes?" (She may answer yeah, a ton of my friends have it or no not really, etc). Then you can say "well it's a skin condition "down below", and the CDC thinks it's not even a big enough deal to include it in any standard panels! It's the stigma that sucks...But I take daily medication to suppress it, I've never passed it on while on the meds and I haven't shown any symptoms in xx time. There is a very small chance, like 1%, that I could pass it on, and i wanted to be honest and open with you before we continue."

 

The disclosure is about making sure she's informed of the (small) risk, and offering information if she needs it. Maybe wrapping into a discussion of her status too will help...guaranteed she hasn't been tested for herpes, and if she has then she probably knows enough about it to not need more information!!

 

Hope this was helpful. And good for you for talking with an ID specialist to get even more knowledgeable, and deciding to disclose!!

[hippyherpy]

I also asked him about protein powder- which I've read is not good to take because of high arginine ratios, he said it wasn't a problem.

[WCSDancer2010]

I also asked him about protein powder- which I've read is not good to take because of high arginine ratios, he said it wasn't a problem.

 

*Probably* not ... BUT .... you don't know which triggers will bother YOU... I don't care what an ID Dr says, we see all kinds of things on here ... and while I haven't seen Protein Powder as a regular trigger, *anything* that can put your body out of balance is a potential trigger ...

 

There is soooo much that we don't know about the whole argenine/Lysine balance, why some seem to be more triggered than others by it or even WHEN they are triggered (I went through a spell were a certain trail mix with nuts and chocolate set me off... I was in early menopause ..it stopped when i finished menopause ... go figure). In fact, this is the whole issue with Herpes ... it responds sooo differently in each person that it's really really hard to get hard and fast facts about exactly what triggers it, how it presents, and how likely each person is to be shedding/etc.

 

 

[hippyherpy]

Are there any studies that discuss the difference of triggers for men and women?

[2Legit2Quit]

Don't think so..... I can tell you liquor will trigger me and w no warning to have an OB. Stress and lack of sleep as re trigger for me as well

[hippyherpy]

Maybe the Valtrex is doing it's job, but I'll go out drinking and have no problems. I read that lentils are bad for herpes somewhere.. I had a lentil burger today to test it out.

[2Legit2Quit]

I've never heard of a lentil burger, so I've have no idea... Sounds not very tasty.. Lol..

 

Well we already know my immune system is not great.

 

I have noticed that it seems those who get H from late teens to mid 20s, seem to handle H a lot better than folk's who get it in their mid 30s and later.. Just an observation, not the rule and I believe that's a lot to do w our immune systems not being as worn out from infections, other viruses, etc as you get older and it's stronger when you're younger. Feel blessed it's not a trigger..

[Nal]

Are you trolling with the lentil thing because the whole second week of my holiday (which was right during my primary OB), I had lentils literally every single day.

[hippyherpy]

I've read online in some places that lentils cause outbreaks because of high arginine to lysine ratio, and other places say they are ok to eat.

[2Legit2Quit]

You yourself said that your ID doctor said there's no scientific peoff to back ajy if that stuff and I've never heard that about lentils.

 

Question @hippyherpy , so you've disclosed once to someone you took home and they rejected you? What and how did you say.it? Just wondering what your delivery was and maybe we can help work on it w you .

[WCSDancer2010]

Regarding triggers:

 

What you have to understand is that everyone's body is different. How we all process what we eat, how our bodies take up the Lysine and Arginine, etc differs from person to person.

 

I mean, look at sugar. For some, it makes them hyper. For some, it makes them sluggish. Some get yeast infections from consuming sugar. Others may bloat. One person can eat it and not gain an ounce, others gain 5# in a heartbeat.

 

So food and lifestyle triggers really do vary from person to person. We can tell you the most common triggers (chocolate/nuts/alcohol/sugar) but until you track them and see the result, we can't tell you what will trigger YOUR OB's. AND it can change from one year to the next, depending on things like immune function, and hormones.

[hippyherpy]

I just did another disclosure. The thing is- what are you disclosing. If you say "herpes" some many people have the completely wrong idea about it.

 

Then it becomes this talk because you have to educate them.

 

Then all that info can be overwhelming.

 

I'd be curious to hear more stories of people making disclosure happen without losing the momentum of evening.

 

What I'm learning is the more I talked about it, the bigger a deal it was becoming. I think that there's probably an efficient way to explain what herpes is:

 

The real stats

The transmission risks

 

and possibly how it has affected me and maybe talk about the history of the stigma.

 

At some point if you keep going, even if they know that your numbers are right, it might seem like you are trying too hard to let them know that it isn't a big deal.

[WCSDancer2010]

Yes - it's easy to overwhelm someone with info. But you also want to make sure that they get GOOD info... so we suggest a simple:

 

I need to tell you something

I'm doing this because I care about you and your welfare

Do you know what Herpes/Cold Sores is/are?

If yes, I have basically the same thing down below

If no, ask if anyone they know has cold sores.... then back to the Yes reply

Explain it's quite common .. 1 in 5 of all their friends has H2, 4:5 have cold sores and that *most* people don't know they have it (don't give the stat unless they ask as numbers get too confusing.

That you can control it with anti-virals and condoms

That unless they specifically ask for it, odds are they have not been tested for it and neither have most people they have already been with so odds are they've been exposed before now to it.

 

You may not give all that in the first discussion, but those are the main points.... All that can be done in a 2 minute spiel :)

 

Adding your personal experience is useful ... much of this will be dictated by their initial response. You gotta just ride each one out as it happens...

 

BUT ... if you want inspiration. go to the Success Stories ... most of them include their disclosure talk .... I've learned a lot of different ways to say the same thing there so that I can say what I need to in a way that I think the other person will be able to understand and receive it best thanks to everyone's shares on here :)