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Hello

i have no idea what is going on right now.. I have had hsv2 since I was 18 I am 31 now.. I was completely outbreak free for the first 7 years and I mean not even one or a slight tingle etc.  
 

When  I was 25 I started getting OBS always triggered by my period every month just to add those 7 years outbreak free I was on the implant and I didn’t have periods at all. 
 

I eventually went on suppression when I was about 28  and my OBS stopped but I did get nerve pain but no visible OBS. Firstly went on acyclovir then changed to valtrex.  For the last 3 years I’ve been on them on and off and had periods where I’ve been on no meds and had no OBS at all but now all of a sudden my OBS are going crazy. 

I had about 4 OBS from jan - March ( not on meds at all) so I went on them again .. low and behold I have had 2 OBS since being on the meds and I have no idea why. The first one I had on meds was very mild and literally lasted  about a day but this one is BAD it’s on both sides of my vagina and i Usually just  get it on one side.  I also suffer with dermatitis on my Vulva and at first thought it was that but the classic leg pain has started so I know it’s an OB
 

I have just came off my period so that could have triggered it. I don’t know what to do anymore I have tried lysine etc and doesn’t Make a difference 

i am not overly stressed yes my diet isn’t great and I do drink wine regularly but I always  have and never had these issues 

 

any help would be appreciated..  

 

 

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6 hours ago, Lucy29 said:

Hello

i have no idea what is going on right now.. I have had hsv2 since I was 18 I am 31 now.. I was completely outbreak free for the first 7 years and I mean not even one or a slight tingle etc.  
 

When  I was 25 I started getting OBS always triggered by my period every month just to add those 7 years outbreak free I was on the implant and I didn’t have periods at all. 
 

I eventually went on suppression when I was about 28  and my OBS stopped but I did get nerve pain but no visible OBS. Firstly went on acyclovir then changed to valtrex.  For the last 3 years I’ve been on them on and off and had periods where I’ve been on no meds and had no OBS at all but now all of a sudden my OBS are going crazy. 

I had about 4 OBS from jan - March ( not on meds at all) so I went on them again .. low and behold I have had 2 OBS since being on the meds and I have no idea why. The first one I had on meds was very mild and literally lasted  about a day but this one is BAD it’s on both sides of my vagina and i Usually just  get it on one side.  I also suffer with dermatitis on my Vulva and at first thought it was that but the classic leg pain has started so I know it’s an OB
 

I have just came off my period so that could have triggered it. I don’t know what to do anymore I have tried lysine etc and doesn’t Make a difference 

i am not overly stressed yes my diet isn’t great and I do drink wine regularly but I always  have and never had these issues 

 

any help would be appreciated..  

 

 

Have you started taking any new medications lately?  In particular, are you taking any immunosuppressant medications (steroids like Prednisone)?  Has your diet changed lately?

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@CHT I don’t take any other meds other than the anti virals.. I have been tested for auto immune diseases hiv etc all negative 

I went to the sexual health clinic yday who said my vagina was red and inflamed but there was no active lesions. I have thrush and BV but am sure an outbreak also as I have leg aches  in my right leg. 
 

my diet hasn’t changed either don’t know what is going on.  I don’t know wether going back on birth  control would stop the OBS as I didn’t have any when on birth control 

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while you were at sexual health clinic did you get checked for HSV2 again?  A blood test (IgG test) to check on your antibodies?  I know it's not always easy to get to a clinic when you have lesions but a swab test would obviously be helpful to confirm these lesions are in fact HSV2 related.... Not sure about the link between birth control and outbreaks but, there is this one study that seems to suggest a link..... I would highly recommend you talk with your doctor before going back on birth control just to control outbreaks though.....https://www.hcplive.com/view/birth-control-may-protect-against-herpes

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@CHT I am not sure what country you are in but I am in the U.K. and they don’t do blood tests for HSV at the standard sexual health clinics maybe at private ones where you have pay they do.
 

What would checking my anti bodies confirm ? And she didn’t swab the area as she said there was nothing to swab and no lesions but I am sure there was. She seemed quite inexperienced.  I have had an lesion swabbed years  ago  to confirm HSV2 but no swabs  since.  I would like  to know if they are HSV or my excema as I never know which is which so I just don’t have sex when I get these feelings as I don’t know if I’m having a Outbreak. 

I will have a look at the link thanks. I wouldn’t want to go on the implant again as I don’t want 3 years of birth  control in my arm. I may consider the mini pill which is the same hormone as the implant as I can easily stop this it I have a bad reaction. I have an appointment with a specialist at the sexual health clinic next week 

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Sorry Lucy, didn't realize you didn't have an easy option for a blood test .... the only reason I asked is I'm curious if you were originally diagnosed with HSV2 via a swab test or by blood test (IgG)?  I'm guessing it was a swab test that came back positive for HSV2, correct?   Also, did you already mention whether you take antivral meds (acyclovir, valtrex, famvir) daily for suppressive therapy?

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@CHT no worries I wasn’t even swabbed when I had my first ever outbreak back in 2008 it was so bad I went to the out of hours hospital and was diagnosed visually. She took one look and said herpes.. I was swabbed for the first time ever before they gave me suppression as they needed a diagnosis on file this was around 3/4 years ago which came back HSV2
 

I have taken acyclovir and valtrex ( generic ) in the past as suppression. I had no outbreaks when on suppression. I am now back on it ( acyclovir) and have been having outbreaks so I have just been switched to valtrex (generic) and started that 3 days ago. 
 

is a blood test beneficial ? As if so I would be happy to pay for one 

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The blood test (IgG antibody test) would only give you confirmation of your HSV2 which it sounds like your swab test has already confirmed so, not sure it would be of much benefit at this stage.  Like you, I first started with acyclovir, then switched to Valacyclovir (generic version of Valtrex).... the Valacyclovir worked well for many years (virtually no outbreaks for nearly 5+ years).... then I "hit a wall."   The outbreaks started again, this time much more severe than even the early years after diagnosis and pre-antivirals!  It all started after I was prescribed a high dose of prednisone (corticosteroid) for a bronchitis issue..... I've struggled with outbreaks now for 2 years even with daily valacyclovir and now switched to Famvir (not much difference in number/severity of outbreaks).   My doctor and an infectious disease specialist both think the prednisone initiated a form of acyclovir-resistance.   So, my unsolicited warning to all HSV folks is avoid those high doses of immunosuppressants like prednisone!  

Sounds like getting back on Valtrex is the best option for you.... it worked before and no reason to think it won't work again.... are you taking 500 mg once daily or 1000 mg once daily?  

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@CHT As I have so many other issues down there such as excema etc sometimes I wonder if it is HSV but it must be as I was swabbed.  I get prodome a lot and no OBS I was told by  several specialists that if a OB doesn’t follow then it isn’t a prodome and was basically  told the prodomes are in my head.  
 

I have never passed it on to anyone including long term partners having  unprotected sex as far as I am aware in over 10 years.. if I was having constant prodomes I would have assumed I would have.  
 

Do you still take the prednisone? Would have thought If you didn’t the Obs would have stopped ? I am hoping it works but acyclovir used to work and i had two OBS on that recently.  They were very very mild but still an ob.  
 

I am taking 500mg but I have taken 1000mg before and due to how active it seems to be at the moment I am thinking to take 1000mg. I just really don’t understand why I went 7 years with nothing  and now to this it’s meant to get better as the years go on but mine has got worse .. the only difference in all of those years was that I was on birth control and not having periods.  
 

I use a steriod cream when my excema gets bad down there and I have read that steroids can cause OBS but I barely even use the cream so it can’t be that. I have paid also to see a private sexual health specialist and she basically told me it’s my excema causing all these issues not my hsv.. I’m just at a loss really if  anything my diet was worse when I didn’t have OBS as I was a Student so I don’t know what it is 

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Yes, steroids can definitely cause outbreaks so, use with caution..... I would ask your doctor about increasing your Valtrex to 1000 mg once a day and see if that solves the outbreak issue.... that's what I took for many years and, like you, had no problems at all with outbreaks until it all ended (after taking the high-dose Prednisone for 3 days) and the outbreaks started again no matter what antiviral I take.  

How long ago was your swab that showed a positive for HSV2?  Have you been able to get swabbed again recently to confirm you actually are having HSV2 outbreaks (and it's not your eczema or thrush??).  Without knowing all your details, I can't help but wonder if you actually have HSV2.... despite that positive swab test..... that's why I originally asked about a blood test (IgG) to help confirm....  

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@CHT I will Speak to the specialist on Monday about the steroid stuff etc but I don’t use it often I usually just use emollient on my excema.  Is it safe to take 1000mg for years ? I assume it is just not sure. I have 6 months worth of it at home  so if I want I can just start taking 1000mg. 
  
the swab was years  ago.. I think it was 2017 I have not been swabbed since.  They have never swabbed me for HSV since 2017  when I’ve gone to the clinic suspecting an outbreak . I was swabbed last week for thrush and BV  when I thought I had a OB  and they both came back positive  for thrush  and BV .. I wasn’t swabbed for HSV though 

I am considering paying for a blood test but I’m worried it will show up HSV1 aswell I’ve never had a cold sore  but I don’t really want that worry if it shows I have that as well 

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Hi Lucy.... here's an article on the safety of taking Valacyclovir for daily suppression for long periods of time (years).... results show it is safe: ....https://academic.oup.com/jid/article/186/Supplement_1/S40/837474

I'd give it a try at 1000 mg and see if that helps get outbreaks under control.....ask the specialist his/her opinion too just to confirm.

If I were in your situation, I think I'd like to get another swab test to confirm HSV2 next time you have an outbreak (I know it's tough to get into the clinic at just the right time to get this done since the window for getting a decent swab sample is rather short).   You could hold off on the blood test if you want to see what your swab results show first but, if you want that extra level of confirmation, the blood test (IgG) for both HSV1 and HSV2 will also confirm your HSV status.  I would not worry too much if your HSV1 results show positive results, especially if the antibody levels are low.... this likely only means that you, like about 70% of the world population, was exposed to HSV1 at some point in your life (very common for children to contract HSV1 from a simple kiss from an aunt or grandma, etc, and never show any symptoms).... again, it's not at all uncommon to test positive for the HSV1 antibodies but you never have cold sores..... your immune system learned to handle the virus many years ago after that "kiss from auntie."  So, don't burden yourself with worry about HSV1 since you are not having cold sores.... 

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@CHT I will speak to them tommorow and see what they say about the 1000mg. 
 

Yeah it is really difficult to get to the clinic at the right time especially even more so since Covid they want a telephone consultation first and then only let you come in if you have symptoms or something urgent, they only saw me this week  as they knew I had various different issues from my notes.  Often they won’t see you on the same day and by then there is nothing there to swab anyway. 
 

there are many private clinics where I live that offer the blood test and I think I will see what the specialist  says tommorow and then maybe pay for one to be done. 

I have never thought in 13 years since I was visually diagnosed that there is any possibility that I don’t have HSV... and I’m pretty sure I do but does seem strange that a lot of the times   I think I have an outbreak they said there  is nothing there at the clinic  

how do you Interpret the blood results.. is it the higher the number the more anti bodies meaning positive ?

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the clinic will help you review the blood results if you decide to get it done.... be sure you tell them you are really interested in verifying whether you are carrying antibodies for HSV2 specifically (and HSV1 if you also want to know about that one).... you want IgG test .... typically the higher the antibody levels the more likely you have an accurate result (instead of a false positive or false negative)..... I wouldn't give up on getting another swab test if that gives you peace of mind but, like you said, it's so hard to get in to the clinic just at the right time!  I'm hoping you don't actually have HSV2 so you can move on from that issue and focus on those other areas of concern (thrush, eczema) .... best of luck Lucy!  I hope you'll let me know the results.

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@CHT I went to see the specialist yesterday she examined me and said she thinks the redness etc I am experiencing is from the excema and not HSV. She has given me some cream  for it and will review me in 4 weeks. 
 

I have  decided to go ahead with the blood test I ordered it yesterday I will let  you  know the results. It was the IgG that I ordered. It says the results are given as positive or negative and test for both 1 and 2 but I can request the clinic  for the detailed anti body levels if I want them so I will ask for this 

I am expecting a positive result for 2 and will be very shocked if it isn’t.

Also spoke with her regarding transmission and she said as I have had this for 13 years even if I wasn’t on suppression my chances of passing on without an outbreak are not zero but  very close to it which I guess has made me feel better although dunno how true this is. 

 

 

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I hope the eczema clears up fast with the cream she gave you..... you were smart to ask for the actual IgG levels and not just positive/negative.... it's good that you're mentally prepared if you get a positive result for HSV2 but, to be honest, based on what we've discussed here, I'm not 100% sure you have it.... but, we shall see.

While I would agree with the specialist saying you have lowered chance of passing the virus on if you aren't in the midst of an outbreak, unfortunately, it's very possible to shed the virus with no symptoms/sores.... that's one of the chief reasons this damned virus spreads as easily as it does.... lots of people don't know they have it since they rarely or never have symptoms (outbreaks).... or know they have it but, avoid sex during outbreaks yet, they are still shedding the virus before/after any outbreaks clear up..... have you ever had a sexual partner claim they discovered they had HSV after you've been together?  I assume you have not which, again, makes me wonder if you actually have HSV2.    Fingers crossed on your blood results!  How soon will you get the test and results?

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@CHT I sent of my blood sample yesterday in the post so I hope to have  results back by the end of the week. I not sure what country you are in but here they send them out in the post and you take them yourself via  a finger prick but you have to fill a small tube from that tiny finger prick and I’ve had trouble doing this in  the past and received a inconclusive result, really hope that doesn’t happen here. 
 

I know about shedding etc but the specialist said that this reduces yearly, she said in the first year you shed about 30 percent but this goes right down the longer you have it.  She said as I was diagnosed 13 years ago I will be hardly shedding the virus at all at this point.  She did say it’s not zero but she said it would be very close to zero and especially when on suppression. No I’ve never had anyone come back to me and say the have HSV from me.. not in 13 years and I have had long term rships in this time and not used protection. Doesn’t  mean it hasn’t happened I guess  as ppl never can be sure where they get HSV from and on top of the stigma maybe they have just never said anything to me 

if the test   was to come back negative which I doubt.. surely that’s not possible as I have had a positive swab before ? And also what are the sores I get because I have defo got   blisters / sores since I was diagnosed and look like HSV

 

 

    

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I'm impressed you handled the testing yourself..... well done.  I live in the US and while I've heard you can order STD check up kits via the mail, and send it in, I think most folks here just go to their doctor and have him/her pull the blood sample.... which is how I got tested years back.  My swab tests (twice) came back "non conclusive" because we missed that "window" for getting enough virus to be able to do analysis.  

I agree with you that since you had a positive swab test some years ago the odds are good that the blood test will be positive too but, there is a small chance that you may have had a false positive on that swab test.... so, if the two results don't match up, you will definitely want to look into another swab test at some point (not easy, I know!).

The fact that no one has told you they suddenly learned they had herpes after being sexually active with you is a good sign.... and yes, the shedding drops with time plus you simply may be someone who just does not shed often or much..... again, assuming you are actually infected with HSV2.... by the way, did you say the swab test years back was positive for HSV2 specifically?  Did they look for HSV1?

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@CHT honestly don’t know what is going on I had really typical OB   leg pain in my left leg all day and some itchiness but  again wasn’t sure if that was the excema.. been looking and looking all day and couldn’t see anything now I have noticed a tiny break in the skin which I think is an outbreak .  I feel really depressed by this Ive been taking the val for  a week now and 1000 mg since a few days  ago and I have never experienced anything like this this is probably my 7th OB since January.. is there anything you can think of that could be suddenly triggering this ? 

did you have a blood test done that came back positive as well? It seems in the US it is a lot  easier to get tested for things like HSV than the U.K.. 

Swab was positive for HSV2 what about  you  ? 

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I'm like you, I get the prodrome signal (tingle-slight pain in my left leg) when I am about to get an outbreak (or often it happens exactly the same time as an outbreak so, no real "warning").... sometimes I get the prodrome and then nothing happens either so, I'm never exactly sure whether to use the leg pain as a good signal of what's to come.  

Couple of questions: 1.  Have you tried anything other than acyclovir or Valtrex?  Have you tried Famvir?  Have you tried antiviral cream on an outbreak (Zovirax)?   I started using Zovirax about 6 months ago (not sure why my previous doctor never suggested it) and perhaps it's a coincidence but, the outbreaks tend to clear up fairly quickly if I use the cream early and multiple times per day.  Have you tried Lysine supplements?  They're inexpensive and easy to find at your local pharmacy.... some people really find they help (they did not really do much for me).

As for what may be causing these outbreaks.... we've ruled out immunosuppressants (steroids like prednisone)....are you still using the cream for the exzema (or was it for thrush?)..... that might be stirring things up if it's a steroidal cream.  Also, how is your caffeine intake?  There is a direct link to high levels of caffeine (coffee, cokes, etc) and outbreaks.... I've weaned myself down to one weak coffee each morning and that's it for the day.  How about alcohol intake?  Also a link to overdoing the alcohol daily and outbreaks..... are you getting enough sleep?  How about stress?  Do you have a stressful job, family life, relationship, etc?  All these things are very much linked to OBs..... but, you probably knew that.  I've got lots of recommendations on a wide variety of supplements/herbs that are considered of some value in preventing OBs, I have experimented quite a bit but, I won't bore you with all that unless you want to go into that at some point.

Yes, I think it's pretty much a standard practice here in US to get the blood test for the virus (if you ask for it.... a lot of doctors don't look for herpes as part of standard panel when looking for STDs).... I suspected I had HSV2 and sure enough, the blood test (IgG) came back positive.  That was NOT a good day for me!  Swab test was attempted weeks later but, came back "inconclusive" because I clearly missed the "window" so, I've never tested positive for HSV2 on the swab test.  

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@CHT thing is I’m not sure if these nerve pains are always released to HSV cos I get them ALOT with no outbreak at all, they can come and go through the day and sometimes be worse at different times, I asked Terri the expert from westover Heights clinic online and she said that's not how the virus  behaves. My doctor here  in the U.K. said the same. She said prodomes are followed by an OB and if one doesn’t happen then it isn’t a prodome. She also said if the anti virals have no effect on the nerve pain it can’t be HSV related.

the leg pain I told you about in my last msg completely went after 24 hours and when I checked the area the next morning there was nothing there at all so signs of a sore or spot etc.  I now have some in my right leg but again nothing on my skin.  It’s weird as I have had HSV for 13 years but leg pain only started about 3 years ago.. I didn’t even experience it with my primary OB.

I have never tried famvir, in the U.K. the first thing they prescribe is acyclovir I kinda had to push them to let me try val, i may ask to try famvir though if I continue to get outbreaks.  Do you have to pay for all of your meds in the the US? So lucky that here  we don’t as valaclylvior is SO expensive I wouldn’t be able to afford that. I have tried lysine and olive leaf but tbh I never try them for long enough to actually see if they make a difference so I should keep it up really. I have also used the cream when I get OBS.thing is even when not on the tablets my OBS are so mild they literally last 2-3 days so it’s not really that I am in pain etc it’s more I just want to stop all together. 
 

I have been told to use the steriod cream every night for 4 weeks. I used it for two nights and then that’s when the leg pain for an OB starting happening but no sores developed. The specialist said as it’s a cream it’s less likely to weaken my immune system and cause any issue with the HSV but i am a bit scared  to use it now .  As for general stress Job Rship etc l, I would say I have been wayyy more stressed  in the passed than I have now and had no obs I wouldn’t say I am overly stressed but I would say the HSV symptoms are stressing me  a lot lately and on my  mind 24/7, before I rarely even thought about it. tbh the main thing stressing me right now is this issue. 
 

I would  be Interested in any thing you can suggest that you think may help. 
 

Did  you have a suspected sore is that why you had blood done ? I assume you never had the typical awful OB then?  How long have you had it  for ? from what I’ve read a swab is more accurate than a blood test, so maybe you don’t have it ? 
 

I remember mine I caught it from a ex partner who either didn’t tell or didn’t know he had it . He was only 17 and I was 18. I never saw any signs of sores etc on him.  Mine was awful I thought it was a shaving rash at  first but it got worse and worse I had weeping sores all over me and I could barely walk I had to go to the emergency department.  We stayed together after that but since then he’s had 2 long term partners that I know of and I wonder if he also passed on to them.  he was in denial and said the hospital got my diagnosis wrong. I don’t know if it was cos he already had it and knew or  cos  he was young so didn’t care but he still wanted to have unprotected sex even though I was likely shedding a lot during  that time

 

   

 

 

 
 

 

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@CHT my blood tests have came back I haven’t Got the index numbers yet but I have requested them. 
 

results are positive for both types, I feel a bit upset about this. I know most of the population has anti bodies for HSV1 even from young due to cold sores  etc but I have never ever had a cold sore in my life. Does this mean I now have to worry about shedding the virus from my lips ?? 

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@CHT Okay have just got my lab report back index numbers show

HSV2 - 2.1

HSV1 - 31.2 

can you help me interpret these please? Isn’t the 2.1 very low for HSV2? I assumed it would be alor higher than that 

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@CHT sorry for loads of posts ! So I have been told my HSV2 result cannot be confirmed as a definite positive as it is in the ‘low positive ’ bracket and it is likely I actually have HSV1 hence the high result and lack of ever having cold sores . 
 

this has confused me as I was sure I swab was typed when I had an OB and was HSV2 

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Posted (edited)

Yes, the HSV1 result is not likely a false positive, it just confirms that you have the antibodies for HSV1.... but, remember, the vast majority of people are positive for HSV1, mostly due to those childhood exposures (WHO study shows 69% of women in Europe are positive for HSV1)..... the fact you have no symptoms on your mouth helps indicate that your HSV1 status is likely old and dormant.... I would not worry about this result since you are showing no symptoms.

As you were told on your HSV2 result, this number is very low.... it's possible it could be a false positive (i.e., the result is sort of "cross-contaminated" by the result from the HSV1) but, it is also possible the low number simply means you have had the virus for a fairly long time and your antibody levels are low.  When you had your swab test years ago, did they tell you the result was positive for HSV2 specifically?  Was HSV1 checked?  As you probably know, a person can be infected with HSV1 in the genital area (not just HSV2 down there) so, it's possible to have OBs in genital area relating to HSV1 (although it's not as common and frequent as an HSV2 infection).  

You have a few options at this point: 1. assume the result is accurate and that the blood test proves you have HSV2....2. Get re-tested and see if result is any different.  3. There are other tests that help define positive vs. false positive (Western Blot test and IgG ELISA) but, I know they are tougher to get here in US so, I assume the same in UK but, you might talk to your doctor/specialist about this).  Either way, I would definitely ask your doctor/specialist as to what they recommend at this point.... you don't want to waste your time/effort/money taking antiviral medication if you really don't need it (assuming you really don't have HSV2) ..... if your OBs are not actually HSV2 you need to talk with a specialist about what is actually causing this problem IF it's not actually herpes.  One other option.... it's much cheaper.... there is a person on this site that is highly knowledgeable about these test results and how best to analyze those results.... his screen name is "WilsoInAus"..... I suggest you kindly ask for his interpretation of your results and be sure to mention your swab test results as well as your situation with these OBs.... He knows much more about these results than I do and will give you better insight as to how to proceed..... sorry if this has become too confusing.... but, if there's any good news here it's the fact that HSV2 result is very low and there is a chance you really don't have HSV2 (possibly).... let's see opinion of  WilsoInAus 

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    • CHT
      1.11 on the IgG test is still really low and could easily be a cross-reaction with the antibodies you have for HSV1..... based on all your data, it sure does not seem as though you have HSV2.... I'd relax and go with that....
    • CHT
      Hey Willily..... what would make you think you have HSV2?  Have you been tested?  Results?  The idea of getting it in the kidneys is unheard of (at least in my non-medical opinion)..... HSV2 tends to stay in the urogential area of the body and to a lesser degree can also be transmitted to the lips/mouth but, inside of an internal organ?  No.  
    • CHT
      Hey Lucy.... well, I guess getting much the same answer from the gyno specialist sort of puts the whole issue back into the category of "it's not likely HSV" you're dealing with down there..... and stick to the 1 gram of valacylovir (which I think is good advice).... did she pull any blood samples or did you bring the data you already have with you?  If I recall, your HSV2 antibodies level were very low, almost "borderline" thus giving more doubt that you may actually have HSV2.  Not sure why she would lean toward HSV2 and not HSV1 based solely on your IgG results..... So she thinks you have seborrheic dermatitis down there?  I've never heard of that but, that means nothing.... hopefully with the new medication, that will be under control in a few weeks or couple of months..... then it will be interesting to see if you have any sign of problems in that zone.... particularly if you stay with the valacylovir.    BTW, the full nude body exam must have come as a surprise!  LOL.  But, she was being extremely thorough I suppose.... better than rushing you in/out.   Oh, and to answer an earlier question, so far, it's been about 3 or 4 weeks back on 1 g/day of valacylovir.... and so far all clear!  It's not a record for me but, I am encouraged.  Also interesting to note that I've been dealing with a whopper of a stomach virus for last 5 days (fever, chills, aches, etc).... I thought for sure this would put too much pressure on my immune system and allow my HSV2 to reactivate but, fortunately, all clear, not even any prodrome.... but, I won't get too excited just yet, it can all change in a second!  
    • Fernie
      I’ve been diagnosed with hsv1 and have had some cold sores on the inside of my lips.  I’ve been diagnosed for some time with that. But around July 2020 I went in for an std panel and to my surprise my hsv2 IGG levels were equivocal.  My doctor at the time told me that I indefinitely had hsv2 although I’ve never had any symptoms.  This began a whole craze. I switched doctors and ordered another hsv2 test that also came back equivocal and was told that what the first doctor said was correct, that I do in fact have hsv2. The fact that I wasn’t testing positive and none of my past sexual partners tested positive led me to think I should keep getting tested to confirm whether I do or don’t have it.  So I went for the third test and it was .72 IGG which would be a negative. (Around July 2020 as well) I was still a little confused so I went for another a couple months later in October 2020, this hsv2 test was .89 IGG which is right under equivocal but still negative.  So armed with this data I went to a private doctor that I paid out of pocket for because I began to think that the Medicaid doctors might be wrong and maybe underpaid or whatever I dunno it just didn’t make sense. So I went to the private doctor and at the time I had what seemed to be like a small ingrown hair and I showed them and showed them my data. They said based off the ingrown hair that it was just an ingrown hair, and that the lab results were correct and that I had no hsv2 and that the prior doctors were wrong. The doctor said I should’ve never been tested because I never had any symptoms prior to that small ingrown hair.  So this made me happy but also made me lose faith in our healthcare system.  But just recently I went back for my 10 panel and on 6/9/2021 my hsv2 results were 1.11 IGG which indicates I am positive. This is driving me crazy and on a side note I noticed that my hsv1 IGG levels were both gradually going up as the hsv2 was creeping up. I dunno if there’s any correlation there but it’s just something I went back to look at out of curiosity because I do know I’m hsv1 positive.  At this point I just want to know if I am in fact hsv2 positive, what should I do? I want to get the western blot test because it’s supposedly the golden standard.   here are copies of my tests  https://ibb.co/Wskdtqs https://ibb.co/fGgjJxd https://ibb.co/HryKn8g
    • ohno35
      I'm sorry you're struggling to find answers; I feel like I'm in a similar place.  When I stopped worrying about the symptoms, they eventually went away completely after almost two years. Then, I did not experience any symptoms AT ALL for 2.5 years. In April I started worrying about the symptoms again, and they came back and are pretty much constant, as they were before. I know that it looks like it's *just* anxiety. But my gut is telling me there might be something else going on. I'm getting the WB done so I can finally rule out herpes completely.  I've been diagnosed with somatic symptom disorder, and I've wondered if it's not just anxiety about symptoms but hyperfocus on certain parts of my body that makes the nerves more sensitive and causes neurological-like issues. I've always struggled with hyperfocus and I've found I fit into the diagnostic criteria for Autism, ADHD, and OCD, but do not have enough of any of the symptoms to qualify for a diagnosis (though I have been misdiagnosed with 2/3 multiple times). The concept of Vulvodynia seems interesting because my understanding of it is that it results from hypersensitive nerves from a variety of initial causes. I wonder if hyperfocus on my vagina, vulva, and mouth is causing certain symptoms.  I definitely had extreme anxiety about herpes before my symptoms started, but I did have an outbreak on my mouth of something that seemed too long-lasting and blistery to just be a pimple, so I wonder if herpes or another related virus is involved too. I know I'm anxious, but I still know my body and I've never had anything on my mouth like that before, as far back as I can remember. I still have the scar from the huge blister almost five years later!!!!! Otherwise I would have been effectively gaslit by my doctors that it was a pimple and I was overreacting. It's possible though that I have had HSV-1 since childhood and had a rare herpes outbreak, but all the other symptoms are largely unrelated. I was hospitalized at age 4 for an extreme reaction to mono and possibly HSV-1, so I'll have to see if I can locate those hospital records. If I can confirm I was positive for HSV 1 at age 4 and also come up positive on the WB, I could still probably rule out my current symptoms being caused by herpes.  If my herpes WB is negative, I do wonder if another virus could be the culprit. I'm not sure if other things can cause blisters on the mouth, or if the oral blister and my other symptoms are unrelated. I know CMV is not out of the question. I know that hand, foot, and mouth disease was epidemic at my University at the time, so it could have caused the oral sore and maybe been an instigator for chronic pain? I've been reading about how certain infections can be catalysts for nerve pain, reactive arthritis, and so on for people with certain genes, autoimmune issues, high levels of stress, and/or other pre-existing risks. I've always had weird reactions to things despite being seemingly healthy, so that would not be out of the question.  We seem to have very similar symptoms, so I'll keep you updated on what I find! I'm getting blood drawn for the WB next week, and then I'll see what happens after that. 
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