Symptoms and worry

[Questionhelp10]

Hello Dr. Thank you so much for having this avenue of communication to get great information.

About 5 days ago I began experiencing itching on my calf and noticed I had some bumps. Didn’t think anything of it and thought maybe a bug bite or something.

About 3-4 days ago, I began experiencing a ‘Tingling’ sensation in my thighs and knees. It lasted for about 48 hours and then ended Wednesday. Wednesday afternoon I started itching at the back of my thigh I checked it and noticed some rash looking bumps in the area. My history of testing is such. I had similar symptoms about 6 months ago, had a genital lesion got it swabbed and visally diagnosed. Both were negative. Followed up this doctors visit with a blood test that was equivocal for HSV-1 and negative for HSV-2. (Enough time had passed for me to test was around 3 months). A month later i followed up with another test at 4 months and again was negative for HSV-2 but this time was a low positive HSV-1. (I believe it was around 1.15). I decided against any further testing because all it was doing was causing me grief and money. Even if I tested positive for HSV-1 I would not know the location.

To the present. Normally I would have thought this was just a bug bite or something but this situation has coincided with a stressful time in my life both physically and emotionally and also with the ‘tingling’ I had in my knees and thighs and feet to much coincidence for me not to become concerned again.

How common is it for someone who is negative for HSV-1. To have a sexual encounter and get HSV-1 in both oral and genital locations?

How common are outbreaks in the mid-thigh region? Right on the edge of the ‘boxer short’ area.

Would it be likely for a recurrent outbreak to move from genitals to mid thigh? Basically whats the situation with does it occur in the same spot or moves around? Or does it vary from person to person?

The first picture is of my thigh

View post on imgur.com

The second is on my calf. Does it look like a herpes outbreak to you?

View post on imgur.com

[Terri Warren]

I’m not sure how you managed to post pictures on this site – we actually removed the ability of picture posting. Having said that, these do not look like herpes lesions to me,, no. If you are really worried you could once again have them swab tested by PCR to be certain if you like.

The HSV 1 antibody test is kind of a mess – it misses about 25% of cases so the first one could have easily missed your HSV 1 infection OR the equivocal is just that – not positive. If indeed you were truly negative the first time, then I would expect a more dramatic first infection and I would expect those lesions to be on the penis the first time, NOT the thigh and certainly not the calf. Yes, a person can get HSV 1 in both locations at the same times. Herpes lesions can move around from place to place but again, I would expect for first infection, the lesions would be genital and THEN might move.

Terri

[Questionhelp10]

Well there are times when I’ve thought I had an oral breakout and my mom gets them about once a year since forever so it wouldn’t surprise me if I have it. However, just to update you I went to the urgent care today. I didn’t tell her that I was concerned about herpes so I could get her first opinion. She said it looked like a simple rash. I then voiced my concerns and she said it didn’t look herpectic? With the location (thigh) nor visually nor with symptoms. I ended up not getting it swabbed because Of How condident she sounded.

• This reply was modified 8 years, 3 months ago by Questionhelp10.

[Terri Warren]

oh good, I’m so glad you were actually seen and the person didn’t think it looked herpetic. A look in person is worth so much more than an online communication.

Terri

[Questionhelp10]

Hey Terri, I believe I have one more question. So I recently got an iGG blood test from Labcorp. (ELISA). Reading the test it shows a positive with a value of being greater than 1.10 (but no value shown). If the cutoff is more concrete at 3.5, is this positive have a chance for a false positive? (This is in regards to HSV-1 btw).

To give some background I had a single unprotected oral encounter a ways back. About 8 weeks after the exposure I got a test that came back equivocal for HSV-1. Now at 5 months I have a positive HSV-1 result (with no values shown). Since then I have been doing tons of reading and a couple of studies jumped out at me. Helping me form questions.

There is a chance that my equivocal was a low value due to an childhood infection and it’s been there a long time. People with long term infections have shown to have low-index values True?

The chances of a one time oral encounter (lasted like 15 seconds) are low risk and would low chance for transmission of GSV-1. True?

I’ve read two studies about GHsV-1 one titled :: A prospective study of new infections with herpes simplex virus type 1 and type 2. Chiron HSV Vaccine Study Group. It states that 2/3 of people present symptoms with HSV-1.

Second is: Genital HSV-1 by Dr. Ward. In it he makes the statement that a new GHSV-1 transmission almost always has a true primary outbreak.

Saying that. Would it be safe to assume that if I didn’t have the classic symptoms or blisters in the first 4 weeks that I did not contract GHSV-1?

Supposedly I had ocular herpes when I was a child. I remember my mom had to rush me to the hospital because I had severe pain in my eye and had it ended up scratching my cornea and messing up my eyesight a bit. This was a long time ago so I’m not 100% sure it was ocular herpes but my symptoms align and my mom said she remembers the doctor saying it was herpes but that I got it from a pool (which dosent add up) anyways maybe I can pull my medical records to confirm this. If this is true, could they be triggering my test? It is HSV-1 correct?

Last scenario is that I just have oral herpes and the test missed 10% of positives and it missed it the first time.

Would it be safe to assume that my situation is oral and can disclose and move forward with that thought process?

• This reply was modified 8 years, 3 months ago by Questionhelp10.
• This reply was modified 8 years, 3 months ago by Questionhelp10.

[Terri Warren]

There is certainly a chance that your HSV 1 positive result is from a childhood infection and the first test missed it and the second one picked it up. It is also possible that you have a very low positive and it is a false positive. I would agree with Dr. Wald when she (not he) says that genital HSV 1 infections are almost always primary – that is, the person has never been infected with HSV 1 or HSV 2 in the past. She is not saying that everyone who has HSV 1 genitally get symptoms. If you had ocular herpes as a child, yes, that would account for your antibody response. The screening test, it turns out, misses 25% of HSV 1 infections (paper being present this month in Australia). If you had ocular herpes as a child, then that is why you are HSV 1 positive, yes.

Terri

[Questionhelp10]

I purchased additional questions:

25%? That’s such a large number, interesting.

Okay then that study saying that 2/3 of people are systomaric for GhSV-1 is misleading? It made sense to me because if a person does not have HSV-2 or HSV-1 they would have a more serious outbreak due to first ecposure.

What are the chances of a one time oral encounter and contracting that genitally?

Moving forward, say I am positive for HSV-1. Would it be safe to assume it is an oral infection until I have a positive swab or visual diagnosis? As opposed to moving forward thinking I am positive genitally or genitally and Orally from my one time encounter.

[Terri Warren]

I’m not sure what study you are referring to that says 2/3 of people are symptomatic for HSV 1. Are you saying that the study says OF THE PEOPLE WHO ACQUIRED HSV 1, 2/3 were symptomatic? That is a different question than do 2/3 of people who have HSV 1 have symptoms. Do you see the difference?

Are you certain that you are reading the test results correctly? There is no index value listed for your result, only that it is >1.10? Are you certain that you aren’t reading the reference ranges rather than your own value?

Yes, if you had ocular herpes a child, then I believe your HSV 1 is oral not genital.

Terri

[Questionhelp10]

I was saying that of the people who had a primary HSV-1 exposure 2/3 were symptomatic. So..this is referencing initial infection I believe.

Yes I believe I am reading it correctly. It is done by Labcorp and on their website it says that they perform an ELISA that only shows positive as being above 1.10. It shows the reference ranges then it next to it, it lists 1.10 FLAG HIGH.

May I tell you my history and ask what you think of this situation?

My main and only concern is genital HSV-1.

Had a brief unprotected oral exposure (Do not know status but didn’t have sores present). No symptoms for 2 months. At the 2 month mark I shave on a Friday. Have sex with my now girlfriend who has tested negative for HSV-1 all her life and has been tested regularly for it. She is having a bad yeast infection that weekend that we discovered after the act. Wednesday I start to get this burning/tingling sensation in my thighs and scrotum. Then, Saturday a red bump shows up on my genitals located right where my scrotum meets the shaft.

I go to the doc and she diagnosis it as Foccilitus. I get an IGG blood test and it comes back equivocal. This would put me at 2 months post-exposure. I go back to the doctor again and tell her i’m still worried about it so she swabs it to put my mind at ease and it comes back negative. (This would be 5 days after the bump first appeared.)

I re-tested at 4 months and it came back positive for HSV-1

I retested at 7 months and it came back positive for HSV-1.

The burning/tingling in my thighs and scrotum lasted for about 2 weeks and disappeared but has thus since come back now. Coinciding with a very stressful time in my life.

My concern,

My one time brief oral encounter gave me GHSV-1. I did not show symptoms till 2 months post-exposure. The doctor mis visually diagnosed the bump as foccilitus. ( I have read that it is often confused) and the swab was to far out to get an accurate read. And my symptoms of burning and such in my thighs and scrotum were an indication of being symptomatic as well as my equivocal test result at 2 months which was that way because of me turning from a negative to a positive.

OR I did not get GHSV-1. The burning feeling was a mixture of anxiety, an UTI (that i tested positive for) and an Yeast infection that my GF probably gave to me. The doctor was correct in her diagnosis as it was close to a shaving time. (Even tho it appeared a week after shaving). And I am positive for HSV-1 due to an Child hood infection.

What are your thoughts?

• This reply was modified 8 years, 3 months ago by Questionhelp10.

[Questionhelp10]

This is assuming I did not have occular herpes as a child because there is no way for me to confirm it… They don’t keep medical records past 10 years.

[Terri Warren]

You are asking me questions I can’t honestly answer. I think you acquiring HSV 1 genitally is unlikely from a single encounter but I can’t tell you that it is zero. You have HSV 1 infection but we just don’t know where or when you got it. I wish I could be more help, but I simply can’t help you further.

Terri

[Questionhelp10]

I decided to sit down with my parents and tell them my situation even tho it was kinda awkward. They assured me with 100% certainty that I did have herpes in my eye. They remember the doctor saying that specific word.. I think it’s safe to assume it was HSV-1 as opposed to chicken pox (Shingles?) as that’s apparently rare and I’ve never had chicken pox before (got the vaccine and all that).

So that happened when I was a child and it’s been a long time. Is it unusual for me to never have a re occurrence on my eye or anything on my face since then?

That explains my positive result and it explains the equivocal as well right? You’ve seen positive people test and come back equivocal?

I think this well end my chapter and questions. Thanks for your help and I will move forward assuming I have oral HSV-1 and disclose with that in mind. This is a great resource.

[Terri Warren]

It is not unusual not to have a recurrence of ocular herpes, no. It does explain why you are positive for HSV 1, yes.

Glad you feel you can move on now.

Terri

[Questionhelp10]

Hey Terri, I do have one more question and also a clarification on some rest results. It seems that I mixed up my tests when glancing at them.

February 2nd test- .95 – Equivocal

March 8th Test- Positive 1.10 (Only shows that I read at an value of above 1.10 no index)

September Test- .96 Equivocal

Eye doctor told my parents that I had herpes in my eye as a child (was left with some cornea scarring as a result).

Is it unusual for somebody that is positive to have such low values? Or is that unusual and I just got unlucky with how bad the test is and got 2 equivocals by chance. Reason I ask is when I read about HSV-1 testing most people have very high Anti-body tests consistently. It just seems unusual to me to test so low twice.

Do antibodies only rise when they are fighting an infection? For example, I haven’t had anything reoccurring in some time maybe 20 years. Therefore my anti-bodies are low because they aren’t needed as much. Does that make sense?

[Terri Warren]

We know that the current screening test for HSV 1 misses 1 out of 4 infections so clearly, not everyone with HSV 1 has high index values on the test.

Antibody is present at all times, not only when virus is active. And since the virus is active often, whether you have symptoms or not, that is a continual stimulus to make antibody.

Terri

[Terri Warren]

We know that the current screening test for HSV 1 misses 1 out of 4 infections so clearly, not everyone with HSV 1 has high index values on the test.

Antibody is present at all times, not only when virus is active. And since the virus is active often, whether you have symptoms or not, that is a continual stimulus to make antibody.

Terri

[Questionhelp10]

I believe I have two more submissions.

Okay, he doc told my mom I had herpes on my eye as a child. Nothing since then. This explains my HsV1. I know the virus is located on the nervous system in my face but I’m trying to figure out about transmission and risk for future partners. I have the ability to shed anywhere on my face correct? Even tho I had a lesion on my cornea?

Similar question but worded differently this would mean people are at risk of getting HSV-1 by kissing me correct?

[Terri Warren]

If you have herpes of the eye, then the virus lives in the trigeminal nerve group which supplies nerves to the face and mouth and nose and eye. You do not shed from thick skin like the cheek but could have outbreaks there. And yes, there is some risk of you infecting others through deep kissing. but the majority of the US population have HSV 1 so it is very likely that you will kiss someone who also has HSV 1 and that is not a risk to them

Terri

[Questionhelp10]

I believe I have one last payed question.

I know this may be just your opinion. But what do you think my best course of action is for disosure given my situation? Ocular herpes and no noticeable outbreaks anywhere since then. Am I inclined to disclose before kissing? Oral?

Opinions may vary, I’m sure. Just wondering what you would tell a patient that asked something similar.

[Terri Warren]

Hmmm, that is such a tough one. My response is guided by the fact that the majority of the population has HSV 1 already. So I have HSV 1 and very few recurrences since I’ve had it since I was a child. If I was single again (G-d forbid), I probably would not disclose that with kissing but would before being the giver of oral sex. I know that is an arbitrary line but probably what I would do.

Terri

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