Help figuring out HSV1 without lesions present

[BeeHappy1984]

After an oral encounter with someone, 21 days later, I began having fever, sore throat, over-all 'sick' feeling, and had a burning, itching and tingling pain in my vaginal area. I went to the doctor and they did an exam, saw no lesions (neither did I the whole time this was going on), ruled out UTI, all other STDs, and bacterial and yeast infections. I have been given two different antibiotics over the last six weeks 'just in case' it was an infection, and it the vaginal symptoms are still there, though the flu-like symptoms are gone.    I still see NO lesions, but do have the sensations.    The person in question is HSV1 positive and HSV2 negative, so my concern at this point is the HSV1 in the genital area.

1.  I am confused when I see things that say that people don't even know they have HSV1 genitally because the symptoms can be so mild yet other places I see that without outbreaks.lesions, it CAN'T be HSV1 genitally.  Which is it? CAN you have HSV1 genitally with NO lesions, only the burning, stinging, sensations that sound similar to what I have read is a 'prodome"?

2.  What happens if I never show any lesions? I can NEVER get a culture to find out for sure,right? I have never had oral symptoms in my entire life so doesn't it HAVE to be HSV1 genitally?

3.  I am confused when I see things that say that people don't even know they have HSV1 genitally because the symptoms can be so mild yet other places I see that without outbreaks.lesions, it CAN'T be HSV1 genitally.  Which is it? CAN you have HSV1 genitally with NO lesions, only the burning, stinging, sensations that sound similar to what I have read is a 'prodome"?

4.  The fact that these sensations linger for weeks at a time, leave for a week, then come back - does that pattern give any 'clue'?
5.  Is the 3.5 an extremely high positive and does that result give any additional 'clues' to the situation at hand?

[Terri Warren, RN, Adult Nurse Practitioner]

you're welcome

[BeeHappy1984]

Thank you again! I will think about whether or not to do the swab over the weekend and if I decide to do it, I am going to call your clinic on Monday and pay for one of the phone consults to help walk me through what is needed.  With there being no lesions, I will have questions for them, so I'm thinking I may pay for the 15 call.  I'm feeling better about the positive HSV1 being something 'old' and probably oral, between your help, Dr. H's, and other things I am reading :))). Thanks and have a wonderful weekend!

[Terri Warren, RN, Adult Nurse Practitioner]

1.  I agree that HSV 1 genitally is a pretty minor infection, yes.  It recurs infrequently in most people and sheds infrequently as well.  I try to avoid the term "no big deal" because what isn't medically a big deal might emotionally be a big deal for someone else.  I would say medically it is not a big deal, yes.

2.  Because the irritation is so constant, I really really doubt it is HSV 1, but only swabbing can tell you.  Nothing else will tell you whether the virus is active or not.  I wish there was an easier answer for you.

3.  There is no harm in staying on Valtrex, it is just expensive.  It would make you less contagious, yes.  People who have new infection are the most contagious, yes.  

I'm glad I can help you.  Sometimes I'm not sure about how much this helps people, very glad to hear that it is helping you ;-)

Terri

[BeeHappy1984]

Hi, Teri - I wanted to follow-up and let you know what my provider said.  She definitely thinks this is vulvudynia and has started me on a tricyclic drug to try and treat the pain.  She doesn't know what caused it and also as we have discussed here, can't say where my HSV1 is located since I've not had lesions in either place.  I still may call your clinic and discuss swabbing, but I can't decide..................I don't know if it would really change anything for me, so I just need to decide about that. My first priority is relieving the pain that I am feeling.

Three follow-up questions for you:

1.  I posted this on another forum as well, but was very surprised that my doc was so non-chalant about GHSV1 and how it is "NO big deal".   I don't know how many cases she sees, but I know she has seen a lot.   Dr. H. shared his perspective as well. With all of the patients you have seen in 30+ years,do you also feel the same that it is "NO big deal"? I've read the links to info. on GHSV1 here and others on the web...........in your professional experience,do YOU personally agree with it that it is no big deal and do your patients with GSHVI truly not have any long-term issues with it?     Whether my vulvodynia is caused by this or not, I know I am HSV1 positive and just wondered.

2.  If the vulvodynia IS caused by the HSV1, the fact that I am still aching, burning, itching - does that mean that I am contagious and should avoid any sexual activity since it is 'active' or has the active phase 'over' and i'm just trying to get through the 'after-effects'?

3.  Suppose my HSV1 infection is new (regardless of the vulvodynia) - even though we don't know where it is.    Would there be any harm in staying on Valtrex for a year whether or not it improved my symptoms?   Would it 'tame' the virus and/or make it likely that I would have fewer problems later AND would it make my less 'contagious'? I thought I read that one is more contagious for the first couple of months or even up to a year?


I appreciate all that you and the doctors do on these forums!    I am sure you know how many people you help, but DO YOU REALLY??? This has been a Godsend to me having someone to talk me through medical issues that really KNOWS and cares.  BLESS YOU for that!

[BeeHappy1984]

Thank you SO much! I got squeezed in this week for a 'problem visit' with my provider and am going to ask about the swab.  If they can't or won't, I will contact your clinic (am assuming there is contact info. on this forum if I dig for it :)))  Thank you SO much.  I have learned so much from you and from the people here.  MUCH, MUCH appreciated!

[Terri Warren, RN, Adult Nurse Practitioner]

I wouldn't take the Valtrex, just stay off of it, and swab the area that is irritated or tender.

Terri

[BeeHappy1984]

Teri, I have had lupus for about 20 years, though it stays pretty inactive (don't know if this might be why it is taking me so long to get over whatever it is I am deadling with).  

What would I be swabbing if there is no lesion present?  And after 5 days of Valtrex, would I be able to tell that this wasn't HSV1 if the symptoms are still there or would I need to be on it longer?

Thank you for your expert guidance with all of this.

[Terri Warren, RN, Adult Nurse Practitioner]

What immune disorder do you have?
Any test that is positive accurately, means active infection.
I would strongly suggest that if you are still concerned that this is being caused by herpes that you get some swabs to collect samples at home when you have these symptoms and then drop them off at the office or lab.  This should be arranged through your provider, or if they won't do it, you can do it through our office.

Terri

[BeeHappy1984]

Terri, after my symptoms being gone for almost a full week, they are now back.    NO lesions (never had any even from the first time this happened 9 weeks ago), just burning, stinging, and itching.    It seems like I get past it for a for almost a week, then it comes back full force.  My doctor gave me a 5 day dose of Valtrex to try (at my insistence) if it came back just to see if it would help.   She still thinks it is vulvodynia and has asked me to come back if it continues and if the Valtrex does nothing (which she seems to think will be the case).    Would 5 days be enough time for the Valtrex to work and I can assume it if does that it may very well be GSHVI that I am dealing with? And it it doesn't work, then I can go back and address it as Vulvodynia?  

ALSO, two other questions:

1.  I have had a long-term autoimmune disorder which I understand makes ones immune system not function well.  If this is GSHVI, could this be why it is going on for so long?   It's now been 9 weeks since it all started, with a few 5-day periods here and there where it is gone and then comes back.

2. I realize the 3.5 is plenty positive, but is it so high that it automatically would mean an active GSHVI infection? Or would the numbers be much higher than that for an active infection (or maybe it doesn't matter how high the numbers are)?

I am in MISERY and need to figure this out :(( Without any lesions ever, it is not proving to be easy :((

[Terri Warren, RN, Adult Nurse Practitioner]

I think it is highly unlikely that HSV 1 would be causing the symptoms that you have.  Having said that, I can't say if your infection is oral or genital, just that you have HSV 1.  I agree that vulvodynia has a good possibility here.

Terri

[BeeHappy1984]

Teri, the doctor says she doesn't think the strep is causing my symptoms as I don't have any discharge, and I think she mentioned other reasons as well.  We've already ruled out BV and yeast through multiple tests as well as conclusively ruled out HSV2. She thinks it is vulvodynia.   Can I rule out HSV1 as being the cause of this since I have had no lesions and my symptoms have went on for so long w ithout relief?   I don't recall ever having an oral symptoms even as a child, though I understand not everybody that has oral HSVI one has ever had symptoms.   With no outbreaks at either place, I may NEVER know, but just wondering about my chronic itch as I think I could get relief if I knew what I was dealing with and could get the right treatment.  She asked me to go to a pain specialist because she thinks I am dealing with vulvodynia, and I want to trust that, just hard to believe because I had that awful one week of flu-like illness when all of this started up and then I had that positive test never remembering having any oral symptoms in the past. Your thoughts?

[Terri Warren, RN, Adult Nurse Practitioner]

The only way you can know if the HSV 1 was acquired at that encounter is to have had a negative IgG at two weeks and a positive of 3.5 later.  Comparing the IgG and Igm is not useful.

I doubt that the strep is a factor here, but I don't know what kind of strep, in what quantity, etc.  It really doesn't matter if you were treated, right?

3.5 is plenty positive.  I wouldn't bother having it done again.

Terri

[BeeHappy1984]

CORRECTION:

I had THREE follow-up questions and not two (so sorry) AND

the IGG was what was 3.5 four weeks later at the 6-week mark (NOT the IGM, which was done once at week two and was .98).

I failed to proof my post and wanted to make those corrections!

[BeeHappy1984]

Teri, thank you for your response.   I have two follow-up questions:

1.   I had the IGM test done at the 2-week mark just because I didn't know any better that this test was not really a good one and that I should have had the IGG.  It (the IGM) was 'equivocal'' at .98.  Fast forward four weeks when I had the IGM with the 3.5.   Knowing this isn't comparing 'apples to apples', does this provide any insight as to whether my positive status relates to this particular encounter? I have NOT redone the IGM test, but wondered if the fact it was 'equivocal' at 2 weeks and that now the IGG is positive, if that meant anything.

2.  I did show strep b in my urine several weeks ago when they were running all of the testing for UTIs, BV, yeast, and they gave me antibiotics at my request, which I don't know really did anything, though I MAY have felt a little bit better (symptoms just never completely went away).  They didn't seem too concerned that this showed up in my urine, but I'm wondering if this could be the cause of my symptoms and if I should ask about this again.

3.  At what point does a positive HSV1 become 'very positive'?   If 3.5 is pretty average, should I be concerned that it might be higher in another few months? the 3.5 was taken at 6 weeks.

I appreciate any follow-up on these questions if you have the time.

[Terri Warren, RN, Adult Nurse Practitioner]

1.  Yes, you can have HSV 1 infection genitally without any symptoms.  HSV 1 recurs very infrequently for most people, so if someone is HSV 1 positive by antibody test and has no history of cold sores, it is difficult to know exactly where their HSV 1 infection is, if they have no sores in either place that could be swab tested.  

2.  If you never show any lesions orally or genitally, but you are HSV 1 antibody positive, you cannot know where your infection is.  The symptoms you are describing now, in my mind, don't qualify as HSV 1 genital symptoms.

3.  I think I answered this question already in 1 and 2

4.  HSV 1 genitally doesn't behave in this way.  Your symptoms are way too frequent for the average HSV 1 genital infection.  

5.  3.5 is a very average HSV 1 index value, neither high nor low.  It gives no clues as to the location of your  HSV 1 infection.

You are going to have to deal with some ambiguity in your life about the location of your HSV 1 infection until or unless you get lesions at either location.  I know this will be hard for you, but your situation is very very common.  If you have sex with someone who is also HSV 1 positive, you need not have any concerns about transmission.

Terri