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Hi Terri,

Thank you again for answering my questions.  I am really struggling with all of this.  I am sorry I have not received Western blot testing yet.  Can you please review our last post to refresh your memory.  I also had a couple of questions from the last post I'd like you to answer in regard to ocular herpes and the valtrex dosage for recurrences.

To update you, the burning in my "backside area" has gone away after 3 weeks.  The burn feeling was in a general area from my perineum up to the crack of my buttocks.  1.  Wouldn't herpes burning be more local to one spot vs. a general area?

I really feel like this is a disseminated outbreak.  My eardrums have a slight burn.  My eyes have burned off and on for 1 month.  I check my upper eyelid last night very closely and saw one little lesion on the rim of eyelid right underneath the eyelash.  I have had burning in my mustache area.  I did realize the "lip blister" I spoke about in our last post is just a skin condition called fordyce.  I was wrong in thinking it could be herpes.  2.  In any case, I know you can't definitively say all this is herpes, so how do I test for these areas?  I guess I'll need a swab from my eye.  Ocular herpes really concerns me.

The lesions on my penis and anus and eyelid look similar--they are super tiny.  They look like very tiny bumps or whiteheads.  Not painful.  They have NOT been clustered but appear in the same areas I've seen them before, but on different parts of my shaft. (and a couple on my stitch line--this area tingles and itches off and on every few days)  I feel like my outbreaks are ongoing. If one area shows a tiny blister it usually disappears within a couple days with Valtrex, but then another area breaks out with one or two tiny blisters?  3.  Is this possible with herpes?

I am suffering with anxiety.  I am anxious every night, and wake up every night in the middle of the night with anxiety.  4.  I'm thinking this perhaps is causing the continual symptoms?

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55646 tn?1263660809
If you have been on Valtrex since you believe that you were infected (is that correct?) then you should be off for at least a couple of months before doing the western blot.  If you've only been taking the medicine intermittently, then you can have the western blot done 3-4 months after exposure.  

Terri
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Avatar universal
Thank you Terri, but how long should I stay off Valtrex before taking the WB test? 5 days? 10 days?

I am continuing to have outbreaks with a very small lesion on one side of my penis (small red bump that appears and disappears within 2-3 days--is a bit sensitive) and a another very tiny lesion on the other side of my penis, near the circumcision stitch line, that tingles and itches intermittently.  Valtrex seems to have no effect.  In other words they have come and gone while on Valtrex and at times when I ceased taking medication for approximately a period of 1 week.  The outbreak locations have switched back and forth, usually every 2-3 weeks.  Very seldom have I been symptom free, but they are disappearing and reappearing.  They have even appeared when I begin take Valtrex again after a short break of not taking it.
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55646 tn?1263660809
I would recommend getting the western blot 4-6 months after a concerning exposure.  
Very difficult to get herpes in a new place after one place has been well established.  
I think medicines, taken daily, can delay seroconversion.  I've seen it in my own patients, and lab folks at UW also suggest that this is possible as well.

Terri
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Avatar universal
Terri,

Can you please answer my questions above?  

Most importantly, when is the appropiate time to take the Western blot?  How many days after Valtrex?  Or does it matter?  

I just took 1 dose for my eyes because they really burned last evening.  It seemed to help.
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Avatar universal
Thanks for your comments.  

I've noticed a couple of tiny bumps/blisters on my eyelid today, right next to the lashes.  I also have had a burning in my eyes as well as around my mouth, intermittently, for about 1 month. (noticeable for a few days, then not for a few days, etc.)  This further leads me to believe that I have an HSV infection.  

1) If someone has HSV1 on their mouth, and has had it for a while, is it possible for them to get it genitally?  Perhaps possible, but much harder to infect?

2) Also, when is the optimal time to get the Western Blot.

I've been off Valtrex for 4-5 days now, but in light of these eye symptoms, I'm tempted to take a dose or two of Famvir I have left.  But then again, I feel like the antivirals haven't helped much anyways...

3) Would I get intermittent burning in my eyes for a month straight if I was on antivirals?

4) Dr. Handsfield and Hook have said on numerous posts that the general consensus is that antiviral therapy does NOT delay seroconversion of antibodies, although it hasn't been studied well.  You seem to think differently.  Is there a reason?
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55646 tn?1263660809
Sorry I didn't go back far enough and see your post sooner.  You are NOT bothering me.    However, I don't agree with your statement that stress causes constant outbreaks because herpes, by definition, is an episodic disease manifestation, not a constant one.  

It is possible for index values on herpes antibody tests can vary, up and down.  That is because the index values achieved are resulted in comparison to a control test value.  There is one study that found a few samples varied enough that they went from positive to negative.  However, using western blot, that did NOT occur in any samples.  The author is Morrow.  

We don't have specific data on how long antiviral therapy might delay seroconversion.  

Your test results are negative, and yes, equivocal is technically a range from .9 to 1.1, but is not positive.  

Yes, you still need a western blot, definitely.  As much as your are worrying about this, as much as it has impacted your life, I'm so surprised you've not gotten one yet.    But I have great confidence that you will soon.

Terri
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Avatar universal
Terri,

I am going to try to stop obsessing about all of this, (and stop writing you..I feel like I'm bothering you) but having herpes is really bothering me and stressing me out every day.  I'm still young, in my 20's, and had a new marriage fail very quickly...so what do I do?  I go out, depressed, and irresponsibly have sex and contract an STD for life.  Now I'm more depressed, anxious, etc.

I must say, however, that many signs and symptoms I am having are inconsistent with what you and the STD docs preach on this sight as not being herpetic.  I'm not saying this to question your expertise, but just to make you aware that many of us are having similar problems, and it's always after we've contracted herpes.  I've now talked to others in support groups, blogs, etc. that say continual stress can cause constant outbreaks and has for them.  Furthermore antivirals sometimes don't work well, especially in the presence of constant anxiety...

1) Do you not agree with this rationale?

Therefore, I think I can answer my questions above on my own.  I will try to remain calm and adjust to having this condition, but I am no longer looking forward to my new life ahead.  Hopefully if I'm calm my symptoms will eventually fade.

I have a few last ?'s.  Please answer them completely for me.  
2) Do antibodies ever go down after having been up?  From a positive range to negative?

3) If you've been on antiviral therapy since 3 or 4 weeks post infection, what are the chances a negative Herpeselect result at 16 weeks is correct?  I know delayed seroconversion can happen, but how often?  Any data on this?  

I just got a .92 HSV1 result (equivocal?) and a less than .9 HSV2 result. (negative)  My doc says they screwed up my first test.

I know I need to get the Western blot, but I've had literally almost every symptom in your handbook except the "classic blisters" that crust and heal.  Hopefully they won't come...
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Avatar universal
Terri,

Without going through the 1000 reasons why I have HSV, can we please assume for the purposes of this discussion that the virus is present.  I will get the Western blot.  Is the only logical explanation that this strain is resistant to the antivirals, or perhaps working a bit but not completely bc of my continual anxiety?  Can you please answer my other questions above listed 1-4, and the questions I have in the last post "Herpes Nightmare".  I would greatly appreciate it.  I know you are very busy..Thank you.
Helpful - 0
55646 tn?1263660809
I do not agree with your assessment that you symptoms are herpetic as you knew I would not.  I do not agree that they are present because the Valtrex is not working.  

Why have you not gotten the western blot test? If there is a stumbling block there, I will try my best to help you achieve that goal.

Terri
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Avatar universal
I must update you..So above I mentioned the burning and anal blisters are gone.  The burn and blisters came on about 3.5 weeks ago. (April 24th)  I distinctly remember massaging my perineum the day before because it helped with my urethral pain.  So I've told how I took loads of antivirals, saw a dermatologist, and he thought it was fungal.  He gave me fluconazole, which I've taken.  The blisters faded and the burn finally went away last Friday (at 3 weeks from initial symptoms)  Well I started Valtrex this past Sunday bc I felt tingling and noticed a couple lesions on my penis.  I took 1g twice a day for a day or two like you had mentioned to do.  Well yesterday the burning and blisters came back to my anus, right in the middle of Valtrex!  Have you ever heard of such a thing?  It's much less severe this time, and today it's not too noticeable and the blisters have improved.  But why am I having such frequent outbreaks, and right in the middle of therapy?  I know you will say it's not herpes related, but what else could cause lesions on my penis, lesions on my anus, burning, etc.  I know it goes against everything you guys say typically happens with herpes, and you'll suggest it's not related, but no one can tell me what else it could be?  This is frustrating!  My educated guess is that stress is activating the virus constantly and Valtrex is simply not working.  I'm not in miserable pain, the lesions are painful, but it's just annoying that the meds are working...Any thoughts?
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