Still unsure if I have herpes

[toomanyquestionsSpectator]

Hi Terri,

I have never had a cold sore or a genital herpes lesion in my life. On Sunday 5/21/2017, I had sex with a stranger. I woke up Monday morning with strange tingling in my lips and in my genital region, especially my anus. By that Wednesday 5/24, I still had such strong tingling in my lips so I began to Google causes. When I saw it could be a cold sore symptom, I got an emergency prescription for Valtrex and took two that morning and two pills at night. No cold sore ever popped up, and I have no clue if one would have if I hadn’t taken Valtrex.

By that Saturday 5/27, I was beginning to experience intense burning – to the point where I was losing sleep – in my vaginal and rectal regions. It was so bad, that that night I took two more Valtrex just to see if it would help. On Sunday 5/28 morning, I went to urgent care and told the doctor my symptoms. There were no physical signs of herpes besides some redness and physical irritation in that region. I did test positive for a yeast infection and a UTI, however.

I began treatment for my yeast infection and UTI that Monday 5/28 but continued to take the high dosage of Valtrex leftover from my prescription (2 in morning 2 at night) through Wednesday 5/31. The burning in my genital region subsided by that weekend, and no sores popped up even after stopping the Valtrex.

My doctors have all insisted that I don’t have herpes and have advised against doing blood testing. Today is 7/23, almost a full month later, and the burning symptoms are all gone. I do, however, have intermittent nerve pain in my legs, thighs, lower back, but sometimes also upper back, neck, and calves. I haven’t gotten an explanation for why my burning was so intense or why I have nerve pain. I am still terrified that I have herpes. What do you think?

[Terri WarrenKeymaster]

I have no idea since you took the Valtrex which could have definitely impacted your symptoms AND will impact your antibody test. The face that you took the medicine with no swab testable lesions confuses the picture considerable. I think you should consider avoiding treatment for three months and then do an antibody test to try to sort this.

Terri

[toomanyquestionsSpectator]

Hi Terri,

I appreciate your response and this forum in general. It’s the most helpful resource I’ve encountered so far.

I know, I wish I had known ahead of time how important it was NOT to take the Valtrex before confirming whether I had herpes or not. Most medical professionals I’ve met since this scare have been alarmingly unknowledgeable about herpes and none of them warned that it would impact testing.

I have NOT taken any Valtrex since 5/31. The date of suspected exposure (although I contacted that man and he sent me his lab results from April which tested negative on the IgG test for both HSV-1 and HSV-2 – there are others who could be the perps as well though) was 5/21. I just took my first IgG test just for HSV-2 on 6/23 which came in at <0.9 – Negative.

Questions:
What do you make of this result?
What should my next steps be?
And how should I modify my behaviors in the meantime?

Thanks again Terri.

• This reply was modified 1 year, 9 months ago by  toomanyquestions.

[Terri WarrenKeymaster]

Well, it’s good so far – you mention there could be others – what are the dates of those encounter?

Terri

[toomanyquestionsSpectator]

The only other date of suspected exposure with a different person was Saturday May 13. I did not experience any symptoms until Monday May 22

[Terri WarrenKeymaster]

So if that was an unprotected encounter, and your symptoms were nine days later, that is within the range of possibility

This is your final post on this subscription. If you have more questions, feel free to renew

Terri

• This reply was modified 1 year, 8 months ago by  Terri Warren.

[toomanyquestions2Participant]

Hi Terri,

Hope all is well! This is still toomanyquestions. I bought 3 more questions on my original account but it wouldn’t let me post and still asked me to renew my account even though I already had. So I created a new account and bought a new pack. I don’t know if there’s any way to look into that?

I’m following up because I just got my recent test results back. I got tested again on 7/25 (2+ months after suspected exposure). I took the HSV 1 and 2-Specific Ab, IgG. I got 7.60 for HSV 1 and <0.91 for HSV 2.

So it looks like it’s for sure that I have HSV 1. I still have many questions.

1. Is it possible to have a result as high as 7.60 if the exposure just happened two months ago? Does it seem likely that this actually was contracted before May?

2. Is there a possibility that I could also have HSV 2? Should I test for that again in month?

3. This is my biggest confusion. I am not sure if I have this orally or genitally since lesions never appeared in either area. What do you think? Is it possible that I have it in both locations based on the symptoms described in my original post? My first symptom was a strong tingling in my mouth area for 3 days but it went away mostly when I took the Valtrex. I also had a strong tingling sensation in my anus and felt the most pain in that area for over a week… along with a lot of discharge… although I also had a yeast infection and UTI at the time. I felt intermittent nerve pain in my legs and lower back for a few weeks as well.

About a month ago… I had an encounter with another man in which I gave him oral (quite a lot). The next day my upper lip swelled up considerably and all the taste buds on my tongue were inflamed. I looked up the latter symptom and read that it could be due to herpes. The lip swelling went down in 2 days but the tongue symptom persisted for a week. Could this have been a recurrence?

4. What’s the next step for me now that I have an official diagnosis.

Thank you again for your help. You have kept me sane through this unfortunate time.

• This reply was modified 1 year, 8 months ago by  toomanyquestions2.

[Terri WarrenKeymaster]

1. You could have had HSV 1 since you were a child – there is just no way to know for sure. Yes, it is possible that you could have this value 8 weeks later.
2. You could have HSV 2, conceptually, we recommend a test at 12 weeks out.
3. Your symptoms sound unlikely to be herpes to me
4. The only way to know if you have HSV 1 orally or genitally would be to get a swab test from any suspicious symptom either orally or genitally. There is no other way to know the location of your infection

I can get a refund if you have paid for questions you’ve not had answered,. Are you saying that you have now paid for six questions?

Terri

[toomanyquestions2Participant]

Thank you, Terri!

1. I will get another IgG test at the 12 week mark, but in the meantime, do you think it’s likely or unlikely that I also have HSV 2? Or do the symptoms I described seem more likely to be an initial outbreak or a recurrence of the HSV 1?

2. Based on my HSV 1 diagnosis, would you recommend that I start taking a daily antiviral?

3. Can you update me on the latest news on a HSV cure / vaccine? I’d love to stay on top of this and even participate in trials if possible.

Yes, I paid $20 to renew my membership on the toomanyquestions username, but I wasn’t able to post even after paying. So then I created a second account (this one – toomanyquestions2) and paid $20 for a new membership in order to post.

Thank you again for all of your help!

[Terri WarrenKeymaster]

1. I will get another IgG test at the 12 week mark, but in the meantime, do you think it’s likely or unlikely that I also have HSV 2? Or do the symptoms I described seem more likely to be an initial outbreak or a recurrence of the HSV 1?

I think it is unlikely and as I’ve said, I’m not even clear that your symptoms are herpetic

2. Based on my HSV 1 diagnosis, would you recommend that I start taking a daily antiviral?

No. You might want to take antivirals IF you have a future partner that tests negative for HSV 1 and 2.

3. Can you update me on the latest news on a HSV cure / vaccine? I’d love to stay on top of this and even participate in trials if possible.

I think the most promising thing right now is the Genocea treatment vaccine. Without being HSV 2 positive, however, you would likely not be a candidate for a clinical trial

Yes, I paid $20 to renew my membership on the toomanyquestions username, but I wasn’t able to post even after paying. So then I created a second account (this one – toomanyquestions2) and paid $20 for a new membership in order to post.

I’ll try to figure out your name so I can refund you on PayPal

Terri

[toomanyquestions2Participant]

Hi Terri, hope all is well! It’s been a while since I’ve posted, but it’s now the first time that I’ve had a reoccurrence of the initial symptoms I had that caused me to post here almost a full year ago. Those symptoms being a burrrrrrrning anal and vaginal region with nerve pain. Potential sore but it’s so small and nonpainful that I cannot tell.

I have started seeing someone and we have unprotected sex. Initially, these symptoms started out as just an itchy butthole. I had been in a bathing suit all weekend and assumed it was a yeast infection. We had a date night and by the time we got back to his place, my symptoms worsened and felt like a bad rash. I still was thinking it was just a yeast infection since it has been so long since I’ve felt these symptoms. Even so, I knew I shouldn’t have sex with an irritated genital region. So we made out heavily, had some dry humping with underwear on, and then I gave him oral sex.

The next morning (this morning actually) my symptoms were horrific. I realized that this might actually be a reoccurrence of HSV1. Sadly I have never gotten confirmation of *where* my HSV1 lives, so I am constantly freaking out over every little bump on my lip or vagina. But this pain is pretty unmistakeable… if this was a reoccurrence of GHSV1, is there a possibility that I spread it to him through our dry humping even though we didn’t actually have sex and I kept my underwear on? I also have nerve pain all over my lower back, inner thighs, and outer thighs. He rubbed my back a bit and also grabbed my butt. I am sick with guilt thinking I may have passed this to him. What is the likelihood?

This is also happening even though I have been taking daily Valtrex and Lysine :(. I saw news about a potential vaccine. Any updates on this?

• This reply was modified 12 months ago by  toomanyquestions2.

[Terri WarrenKeymaster]

You need to have the area swab tested immediately to sort this out rather than making assumptions that may or may not be correct.

Nothing you did will pass him HSV 1 genitally – but remember that you could have it orally – you just don’t know for sure.

No vaccine coming any time soon, I’m afraid.

Terri

[toomanyquestions2Participant]

Thank you, Terri! And in general, I want you to know how special it is for you to continue to help all of the distressed, confused people on this forum. You are an angel!

Now I am trying to figure out some things. I am curious of this HSV1 was a recent infection or something that has been in me for a long time. My date of expected exposure was in May 2017. I did the HSV 1 IgG, Type Spec for the first time on July 27, 2017 and my result was 7.60. I took the test again on Feb 2, 2018 and the result was 8.16. How does this read to you?

Secondly, I am wondering if the guy I am dating now was the one who gave it to me in the first place. We dated last November 2016 – April 2017. I also had two other sexual encounters in May. If my first symptoms took place on 5/22, is it possible that it was from the guy I last had sex with in April? Or more likely one of the other encounters?

Lastly, since I have had odd sensations and symptoms on my mouth and my genitals, I highly suspect I have HSV1 in both regions (I have gotten bumps in both places swabs but the results always come back negative). Does this mean I am 2x as likely to pass this onto someone? Have you seen long term relationship where the woman has HSV1, takes antivirals, has unprotected sex, and the man never gets HSV1?

Thank you!

[Terri WarrenKeymaster]

Now I am trying to figure out some things. I am curious of this HSV1 was a recent infection or something that has been in me for a long time. My date of expected exposure was in May 2017. I did the HSV 1 IgG, Type Spec for the first time on July 27, 2017 and my result was 7.60. I took the test again on Feb 2, 2018 and the result was 8.16. How does this read to you?

You cannot know from these two results (since you have no negative result to look back upon) how long you have been infected. No way to know at all. They are both firm positives.

Secondly, I am wondering if the guy I am dating now was the one who gave it to me in the first place. We dated last November 2016 – April 2017. I also had two other sexual encounters in May. If my first symptoms took place on 5/22, is it possible that it was from the guy I last had sex with in April? Or more likely one of the other encounters?

Again, we cannot know the answer to that. Your first recognized outbreak could have been a recurrence, – no way to know.

Lastly, since I have had odd sensations and symptoms on my mouth and my genitals, I highly suspect I have HSV1 in both regions (I have gotten bumps in both places swabs but the results always come back negative). Does this mean I am 2x as likely to pass this onto someone? Have you seen long term relationship where the woman has HSV1, takes antivirals, has unprotected sex, and the man never gets HSV1?

Without a positive swab test, you cannot know if your infection is both oral and genital and I would discourage you from jumping to conclusions about this. I have most certainly seen couples who are discordant for HSV 1 and remain that way for many many years, yes

I believe this is your final post on this set of questions – it got a little confusing to me.

Terri

[toomanyquestions2Participant]

Thank you again for your reply. I purchased more questions. Now I just want to get out my last few questions regarding this:

– Although we cannot know when I was infected, with an antibody level as low as 8, we can be sure that this is not an infection from childhood, correct? I’ve browsed this forum and most people with longstanding infections have IgG values of 30-50.
– Why is it that so many people only get GHSV1 from those with oral HSV1? In almost all cases when people receive oral, they are also likely kissing that person before, during, after, so why just the genital infection? This seems common but it confuses me.
– Is oral HSV1 more likely to spread than GHSV1?
– If I have a partner who also has HSV1, is it still important to avoid contact during suspected OBs? Can one partner’s OB trigger an OB in the other?
– It has been a full week since my original burning sensations that subsided a day or two after my sexual encounter with my boyfriend. We had another date last night and I still didn’t feel comfortable having sex because I have been having intermittent shooting nerve pain up and down my legs still, but once again we had some dry humping with my underwear on (his off) and I performed oral again. What is the risk of transmission here? I have been taking daily Valtrex and Lysine as well.
– This is more of a high-level question, but if half the population has HSV1, why is there such a stigma around it? It seems like not a big deal at all, yet also almost life-ending. Why is it this way? Do you think it should be? I have spent $1,000s on therapy since this diagnosis and I still feel unwell about it.
– If my partner has oral HSV1, what is the likelihood that I can give him GHSV1? And vice versa?
– If my partner has HSV2, is he protected from getting my HSV1?

[toomanyquestions2Participant]

I also want to add that now it’s been over a full week since my rash and burning has subsided, but I still have shooting nerve pains down my thighs and legs. Should I be avoiding sex during this time? I am still taking daily Valtrex and Lysine.

[Terri WarrenKeymaster]

– Although we cannot know when I was infected, with an antibody level as low as 8, we can be sure that this is not an infection from childhood, correct? I’ve browsed this forum and most people with longstanding infections have IgG values of 30-50.

The values vary depending on the brand of test that each laboratory uses and also how that lab reports out their results. Some labs simply say that the value is greater than five while others report out the exact number that is obtained from the test. With an index value of eight, you could certainly have been infected since childhood.
– Why is it that so many people only get GHSV1 from those with oral HSV1? In almost all cases when people receive oral, they are also likely kissing that person before, during, after, so why just the genital infection? This seems common but it confuses me.

We do not know the answer to that question.

– Is oral HSV1 more likely to spread than GHSV1?

Yes, oral infection is more likely to be transmitted then genital infection.

– If I have a partner who also has HSV1, is it still important to avoid contact during suspected OBs? Can one partner’s OB trigger an OB in the other?

If both parties are infected with the same virus and the infections are well-established rather than branded new, it is highly unlikely that anyone will get an outbreak in a new location Nor will outbreaks be triggered by having sex when one person has an outbreak. Sometimes however sex is a trigger for outbreaks in some people.

– It has been a full week since my original burning sensations that subsided a day or two after my sexual encounter with my boyfriend. We had another date last night and I still didn’t feel comfortable having sex because I have been having intermittent shooting nerve pain up and down my legs still, but once again we had some dry humping with my underwear on (his off) and I performed oral again. What is the risk of transmission here? I have been taking daily Valtrex and Lysine as well.

There is no risk here of you transmitting a genital infection to your partner

– This is more of a high-level question, but if half the population has HSV1, why is there such a stigma around it? It seems like not a big deal at all, yet also almost life-ending. Why is it this way? Do you think it should be? I have spent $1,000s on therapy since this diagnosis and I still feel unwell about it.

Stigma is an interesting thing. I think if people understood how common these infections were and how many people are asymptomatic but still infectious, stigma would be reduced. However, I think it is up to you to think this through rationally and form an opinion and the subsequent emotional response based on facts rather than public opinion. This is for yourself and your own mental health.

– If my partner has oral HSV1, what is the likelihood that I can give him GHSV1? And vice versa?

Extremely unlikely
– If my partner has HSV2, is he protected from getting my HSV1?

Yes

Terri

[toomanyquestions2Participant]

Thank you, Terri! Hope you enjoyed Passover.

So now it has been over two full weeks since this suspected recurrent outbreak started. It began with anal itching on Sunday, March 25. Progressed to full-on vaginal and anal burning with nerve pain all over my thighs and lower back by Tuesday 3/27. The burning and rash quickly subsided by the end of the day on 3/29 but the *intense* nerve pain has remained and has not shown any sign of getting better.

In fact, it is now 4/9 and some slight vaginal and anal burning is returning. And I have little zit-like dots all over my upper thighs which are painful and seem like they could be symptoms as well. Do you have any idea what is going on here? Does it seem herpetic?

I went to get a PCR swab today but I do not trust the clinician who took it. I had to debate with him for 20 minutes because he didn’t believe HSV1 could present genitally and also didn’t think you could PCR swab an area without lesions. The ignorance surrounding herpes in the medical world is astounding:(

– Should I continue to abstain from sex with these symptoms?
– If three weeks pass and I *still* have intense nerve pain, does that mean I am likely still shedding? Would it make sense for a recurrence of GHSV1 to shed for over three weeks like that? I am at a loss here. Why aren’t the antivirals helping?
– Can you share more about your experience with HSV1 discordant couples who use meds but do NOT use condoms? Is there hope that I will not pass this to my partner if we choose not to use condoms?
– Is my partner more likely to catch my GHSV1 by performing oral sex on me than through regular sex?
– I am also getting nervous that I might have HSV2 as well that is not showing in IgG tests because I take antivirals. If my suspected exposure was 5/17 and my most recent IgG for HSV2 was in 2/2018, can I trust the negative result even with the antivirals?
– What dosage of Valtrex do you recommend for suppressive therapy?

[Terri WarrenKeymaster]

Honestly, this doesn’t sound like HSV 1 to me. And even if the clinician has such incorrect and weird beliefs about herpes, the swab should be objective data. The zit-like dots of your thighs sound nothing like herpes to me – not at all. And HSV 1 genitally just doesn’t normally behave in this way. It is likely that the antiviral are not helping because it isn’t herpes.

You do not know that you have genital HSV 1 unless I am really missing something here? I’m not so sure why you are asking all about genital HSV 1 when we don’t know that you have that? HSV 1 genitally is rarely transmitted via intercourse.

If you have been off antivirals at some point for at least 12 weeks, you probably would have made antibody.

acyclovir 400 mg twice a day or valacyclovir 500 mg once a day

This is once again your final post on this subscription.

Terri

[toomanyquestions2Participant]

Hi Terri,

I have purchased more questions so I can ask a few follow ups around symptoms and transmission.

I am still seeing the same person I discussed earlier. We are in a committed, monogomous relationship and do not use condoms. I take daily suppressive Valtrex and Lysine but still often worry about spreading my HSV1 to him. It’s very hard for me since I don’t know where it lives.

I have been feeling intermittent nerve pain in my legs and occasional zaps on my mouth since he beginning of September. I went to A bachelorette party last week and I think my immune system was shot from too much partying. I woke up with a sore throat and a slight cough yesterday morning. My SO and I had sex together again that night. Today he also has a sore throat and said he feels tired and foggy. Is there a chance this is from him contracting my HSV1? I don’t know how I will live with myself if I end up transmitting this to him.

And – Are my symptoms a sign of a recurrence? It’s been so hard to live with this mystery.

• This reply was modified 6 months, 1 week ago by  toomanyquestions2.

[Terri WarrenKeymaster]

Is there a chance? Yes,there is a chance but there is always a chance. I just don’t know what else to say to you about this. You can give off virus even when you don’t have symptoms so trying to identify if any particular symptom is HSV or not isn’t too helpful, honestly.

There are so many posts here – I don’t recall. Has your partner been tested?

Terri

• This reply was modified 6 months ago by  Terri Warren.

[toomanyquestions2Participant]

Hi Terri,

1) Do GHSV-1 recurrences typically include fever/flu symptoms? Or just the primary outbreak?

I ask this because I have not felt any type of fever symptom since 2017 when I think I had my primary infection (although no sores ever appeared). This week I am suffering from what feels like a full blown flu. I don’t have any cold sore or genital herpes sores or sensations yet, but I am worried it could be related.

I am especially worried because my SO has also had cold-type symptoms for the past 3 days and I am wondering if this is a sign he has caught the virus. He also mentioned last week that he has felt a sharp pain in his leg every once in a while (what I used to get!). Do you think these are his prodrome symptoms? How long after suffering from cold-type symptoms does a personally generally display an actual outbreak?

And no he has not been tested but has no history of outbreaks.

[Terri WarrenKeymaster]

1. I think sometimes people with type one infection can get mild flu symptoms with recurrences. And when we say flu symptoms we’re not talking about cold symptoms, we’re talking about aching muscles low-grade temperature light sensitivity headache. I have no idea if the pain in your partners like is related to herpes or not and again, flu symptoms are not cold symptoms

Terri

[toomanyquestions2Participant]

But how long would it take for the sores to show up after having flu symptoms? We have both been feeling flu-ish for 5-6 days. Would sores have shown up on him by now if this was from a primary infection?

[Terri WarrenKeymaster]

2-10 days

Terri

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