I have ghsv1 after an established hsv1 infection please help?

[CatLady131313]

I had bloodwork in 2009 for hsv1 and I carried it with coldsores every couple years since this may 2019 when I believe I was intentionally given herpes through sex and oral. I 2 weeks later contracted ghsv1 with a blank no blisters swab? The doctor did see anything at all is there any chance it was wrong? Also I have not had an outbreak since june of 2019.

2)I am worried about disclosing my genital infection or just disclosing my oral infection in relationships thoughts? Do I need to? If I'm careful? I always avoided outbreaks with my oral sores and never transmitted

3) what about childbirth is it true that hsv1 is more transferred to the fetus than hsv2?

4) does hsv1 require higher doses of valtrex to suppress than hsv2?

5) because of my pre existing antibodies at infection am i likely to have an outbreak in the future? Any advice so deeply appreciated snuggling hard can't decide if life is over or I'll be ok with little impact

[auntiejessi]

Okay, I'm super confused.

You had a positive hsv1 blood test in 2009. You get cold sores occasionally.

Then in May 2019, you got ghsv, and were diagnosed with some kind of swab as having ghsv1? You had no blisters, but were swabbed genitally anyway? Am I understanding that correctly?

Did you have a positive ghsv1 swab?

You have another thread going. Let's stick to this one so I can keep it all straight.

Here is your other question:


What is the outlook because I've been a year since first ob and not on antivirals I read it often goes into remission in a year or 2? But what is this based on how can I trust anything or trust shedding rates? Or worry I'll have no outbreaks for a year than get a number of them a year or 2 down the road?


My answer:

Herpes never goes into remission, if you mean this definition: "Disappearance of the signs and symptoms of cancer or other disease." (https://www.medicinenet.com/script/main/art.asp?articlekey=5296)

Ghsv1, from the start, rarely sheds and rarely recurs for most people. Because of this, it rarely transmits.

Your first year or two of ghsv1 infection, you may be shedding about 3-5% of days a year, which is about 10-18 days. After 2 years, it's down to about 4 days. (https://westoverheights.com/forum/question/ghsv1-5/ - Terri Warren is one of the world's leading experts in the field.)

Many people with ghsv1 only get the initial outbreak and then never get another. There's no way for you to know what will happen with you, but if you do get some later, it will likely be for a reason - maybe you have an infection like bacterial vaginitis or another STD, maybe your immune system will be weakened by cancer treatment (I sure hope not), but most often, you'll be able to figure out why. If that's the case, you can always take meds like Valtrex to help.

Are you more worried about recurrences or transmission or both? The thing about herpes is that it recurs. It's just what it does. The sooner you accept that, the easier living with herpes is. You have ghsv1 - it really shouldn't affect your life in any big way.

What can I help you with so that it's easier for you to accept? Are you afraid of outbreaks? Transmission? Telling partners? Something else?

[CatLady131313]

I am worried about outbreaks becose of trauma from how I was infected

I understand it recurs or can

What I'm confused on is reading it rarely recurs but what is this based on? I understand I've read from dr handsfield that it often recurs once or a few times in 1 to 2 years but what is this based on? I understand it sheds still I just seem to have nerve pain and it's hard for me with the trauma mostly because I'm worried an outbreak will case the nerves to all swell again and yes I've never had a classic outbreak the pain started a few months later and is like a sciatica and my left labia stings on/off I can never see anything

Yes I had a swab taken at my request because I felt I'd been intentionally infected there was nothing to see I and my doctor were shocked at the result

I am basically asking if I've had coldsores every 2 or 3 years with having oral hsv1 can I expect the same pattern with my ghsv1? Or going back to what dr handsfield said is it likely that if I have had no outbreak in a year and if I go another year that I fall under the 88% that won't have another outbreak according to Terry Warren? I don't know what that is based on either?

[auntiejessi]

So first, have you had any counseling regarding the trauma? That's the most important thing. If you haven't, you might consider RAINN - https://www.rainn.org/about-national-sexual-assault-telephone-hotline - 800.656.HOPE (4673) - this is for the US

If you're in Canada - https://crcvc.ca/links/ - there are several links here, and you can find one based on where you live

This has resources for UK, Canada, Europe, Asia and others - http://www.ibiblio.org/rcip/internl.html

The info that Dr. Handsfield and Terri Warren give are based on years of studies.

Oral herpes type 1 is different than genital herpes type 1. Hsv1 prefers the oral area, so it tends to recur more and shed more. You shouldn't expect the same genitally.

Have you considered going on suppression? That's taking daily Valtrex or acyclovir. It can help prevent your oral outbreaks, and even if it's just a psychological benefit for your ghsv1, it might help you get through this. You don't have to tell your doctor anything except you are having frequent oral outbreaks or want to prevent transmission.

You may never get another outbreak genitally. You might. Statistically, even if you do, they shouldn't be frequent.

I'm sorry you're dealing with all this. Please consider getting help. It could really benefit you.

[CatLady131313]

I'm in therapy

I am just confused if I have no outbreaks in a year or 2 years do you find it likely I can relax at all? I'm worried about my nerve pain,  I'm confused why I got hsv1 twice? Is there any chance my antibodies will help?

I'm just trying to find hope that if I'm at a year with no recurring outbreaks that its likely to continue at this pace? I miss myself I'm just destroyed I've lost so much

[CatLady131313]

I can't take pills they remind me too much plus why do I see double dose is required for hsv1 if it sheds less

[auntiejessi]

I'm very surprised you got hsv1 genitally after having it orally. That's very rare.

I don't want to push you into revealing any details that will trigger you, so I haven't asked any questions. Generally speaking, your antibodies you have from an oral hsv1 infection protect you from getting it genitally. An exception might be if you were exposed to a high viral count, like if someone had an outbreak at the time of your exposure.

Your antibodies don't help nerve pain. They help control the virus so you might not get frequent outbreaks. Nerve pain is something different. Are you sure you don't have sciatica? A pinched nerve?

I don't know where you read that the dose is doubled for hsv1. That's not true.

I realized I never answered your original questions.

1) The doctor did see anything at all is there any chance it was wrong? Also I have not had an outbreak since june of 2019.

I can't say if it's wrong without knowing what kind of swab it was. Can you get a copy of your lab work - your blood work and swabs?



2)I am worried about disclosing my genital infection or just disclosing my oral infection in relationships thoughts? Do I need to? If I'm careful? I always avoided outbreaks with my oral sores and never transmitted.

I always go by the "do unto others" rule. If you would want someone to tell you, you should tell them. Assuming you do have ghsv1, even though the chances of transmission are so low, wouldn't you want to know?

Also, this probably depends on the nature of the relationship. If it's a casual, one-night kind of thing, maybe not. If it's someone you want to be with long term, imagine that person finding out later that you had it and hadn't told them for weeks, months or years.

3) what about childbirth is it true that hsv1 is more transferred to the fetus than hsv2?

No - where are you reading this stuff? The only dangers for baby come if you are infected during your 3rd trimester or if you have an outbreak during pregnancy. Many docs will put mom on valtrex during the 3rd trimester to help prevent that. If you do have an outbreak during pregnancy, you can have a c-section.

4) does hsv1 require higher doses of valtrex to suppress than hsv2?

No.

5) because of my pre existing antibodies at infection am i likely to have an outbreak in the future? Any advice so deeply appreciated snuggling hard can't decide if life is over or I'll be ok with little impact.

Ghsv1 is less likely to recur than ghsv2. Everyone is different, of course, but many people with ghsv1 just have an initial outbreak and then nothing ever again.


I'm so sorry that you feel like your life is over. It really isn't. I know you have trauma surrounding this, which compounds all these feelings, but I swear to you that your life isn't over, whether it's from the trauma, herpes or both.

[CatLady131313]

Ok thank you I basically am confused on one last thing I had oral hsv1 and I got that again too , I had it on my right side every 2 or 3 years but nothing since 2016 then this new hsv1 came on my left side of mouth so I'm just wondering if sicevthat was every 2 or 3 years I can expect same with the new hsv1? ...and if genitaly will be similar? Basically what I'm asking is if my antibodies already existed if its starting over with another decade of outbreaks or if it will settle sooner? I already know I never in all this stress and hell , alcohol,  no sleep have definitely not gotten my old hsv1 outbreak on left just 2 oral and 1 genital ob on right, basically is it round 2 or will it settle sooner because I already had the virus? And even viral counts and all why did I get this again a second time? That's what I'm confused on is if I need to go through x amount of outbreaks till it chills again or if I'm likely to settle it sooner than another decade?


And my mother and father both had hsv1 in their teens both had nothing since now in their 60s so basically I understand it's not remission exactly but more a lack of outbreaks in decades is all I meant again thanks for everything

[auntiejessi]

If you already had it orally, you didn't get it again orally. You are just getting outbreaks in new places, which can happen.

Herpes infects nerve groups, and oral herpes infects the trigeminal nerve. This means that at any time, you can get outbreaks anywhere on the mouth or in the nose. This doesn't mean you got a new infection if you get an outbreak in a different spot. It just means that it decided to travel down a different nerve path. Why? Who knows - maybe stress, trauma, alcohol use, maybe for no reason at all. Some people get outbreaks in the same place every time, others never do.

Medically, scientifically - you didn't get a new oral hsv1 infection. It's impossible.

It's really hard to say for sure what is going to happen. Your body seems like it's still in a fight or flight status, and you're drinking, not sleeping. This stress on your body is going to make it harder for it to settle and keep outbreaks under control.

Are you working with your therapist on coping skills? Are you able to meet with your therapist now with video calls? Having been through a similar trauma, I really hope you are making use of that. It's vital. You won't ever "get over" it, but you can get through it.

[CatLady131313]

I'm just wondering in a 10 years time say if dr handsfield is correct when he says 40% of people never have another outbreak and if they do they have 1 or 2 more and that is it...only a rare few go into have longterm problems? What is this based on ? Does anyone have personal experience?

[auntiejessi]

That's based on studies. I don't have personal experience with ghsv1, but I have a couple of friends with it. One has only had an initial outbreak, and then nothing again. The other I think has had 3, maybe 4, outbreaks in about 15 years, and they've all been very mild, and coincide with bacterial vaginitis, which she is very prone to get.

I have ghsv2, and take valtrex. I rarely get outbreaks. There are ways to manage things if you get outbreaks. I know you don't want to take meds, but if it comes down to it, are meds better than pills as far as reminders go? Maybe meds could be seen as a step for taking control back.

Talk to your therapist, especially since your drinking and not sleeping.

[GuitarRox]

So, you are self diagnosing with ghsv1?  Your doctor did not diagnose you? 80 percent of the population has hsv1.  It's very common and for most people, not a cumbersome issue to deal with. But from what you've written, you didn't get a diagnosis of ghsv1.  

[CatLady131313]

I actually had a swab test done on no blisters or scratch or any viable symptoms I just knew I might be at risk it came up positive I regret obviously getting the swab