Confusing Herpes Diagnosis

[DebbieDoesDallas]

January, 2008: sores appeared on vagina.  Doctor visually diagnosed as herpes.  Sores lasted about a week and went away.  Swab test results were negative.

August, 2008: sores appeared similar to before.  Blood test was negative for HSV1 and HSV2.

January, 2009: sores appeared for third time. Sores lasted over a week and caused significantly more discomfort than before.  Gyno visually diagnosed as herpes.  Did swab test and blood test – all results negative.

All three times the sores appeared I was sick.  The last time the sores appeared I was sick for a total of about 6 weeks.  Sickness was not severe – consisted of fatigue and a sore throat.

I’m 21 yrs old & have had 2 sexual relationships.  Relationship with Cornelio was four years ago and involved oral sex on only a few occasions.  Cornelio has had no history of herpes or cold sores that I am aware of.  Relationship with Yuri has been for the past 3 ½ years – in the first 2 years we were sexually active on a regular basis and the last year-and-a-half the sexual activity has been intermittent due to a long-distance relationship.  The sores have appeared about 2 weeks after I have had sex.  The relationship with Yuri has been monogamous.  Also, sex has always been painful for me and I don’t know why.

Yuri has tested positive for HSV1 and negative for HSV2.  Yuri’s mother and brother have gotten cold sores since they were children.  Yuri has never had a cold sore in his life.

I’ve read Behcet’s disease has symptoms similar to herpes.  I get white sores in my mouth that are not painful like canker sores, they’re not open sores, and they go away on their own.

Questions:
1. Do you think I have herpes?
2. If so, would you suspect I got it from Cornelio or Yuri?
3. What type of specialist would you recommend I see for these sores?
4. Do you think Bechet’s disease is plausible?
5. If I have HSV1, would you recommend taking Valtrex daily?

Thanks,

Debbie
Dallas, TX

[Edward W Hook, MD]

The evidence suggests that you do not have herpes.  Cultures can sometimes be negative, particularly if a number of days pass between their appearance and taking the culture but the combination of two sets of negative cultures and negative blood tests is persuasive evidence that your vaginal sores are due to something other than herpes.  (By the way, the visual diagnosis of herpes can be difficult and even experts are incorrect in their visual diagnoses as much as 30% of the time.)  The fact that you have gotten ulcers both on your vagina and mouth is also unusual for herpes.  Herpes lesions tend to appear one place or another while other systemic diseases sometimes associated with ulcerations may cause sores in more than one location.  Bechets is one possibility but I suspect there are other possibilities which might be possible as well.  It is time for you do seek the opinion of a specialist, either a dermatologist, a rheumatologist or both to try to sort this out.  Before you do, I should also warn you that on occasion sorting these sorts of problems is difficult and there may be a fair amount of testing required.   As for your specific questions:

1.  No
2.  Impossible to say.  Both are rather low risk.,  If this were herpes, since Yuri has had cold sores, he is the more likely candidate. Having said that, I still doubt that this is HSV so the "what if" answers to this question are probably irrelevant.
3.  Yes, see above.  Someone affiliated with UT Southwestern might be a great place to start.
4.  Possible, yes.
5.  No reason to go there yet.

Hope this helps.  Please keep us posted on what your doctors say.  EWH

[Edward W Hook, MD]

Thanks for the additonal information.  In answer to your follow-up questions:

1.  The HerpeSelect tests used by most labs can miss 3-5% of herpes infections.  Thus there is an outside chance that you could have a positive Western blot but your other tests would be negative.  It is far more likely however that you do not have herpes.
2.  There are not precise statistics to answer this question.  Asymptomatic shedding of HSV-1 does occur and the infection can be spread even in the absence of cold sores.  The scenario you propose however is most unlikely.  EWH

[DebbieDoesDallas]

Dr. Hook,

Thank you for your extremely prompt response!  I guess your conclusion is reassuring and disconcerting at the same time.  At least it makes logical sense, whereas my previous doctors' conclusions did not.  I will seek out a specialist to investigate the sores further and let you know the outcome.

A couple clarifications and follow-up questions:

Yuri has NOT ever had a cold sore, despite testing positive for HSV1.  I have heard that, technically speaking, it is possible to transmit HSV1 to the genitals, even if an individual has never had a cold sore.

The sores I have gotten in my mouth don't seem to be at all connected to the ones on my vagina.  I have gotten the ones in my mouth intermittently for quite some time, and they're relatively minor.  I only mentioned them because I read mouth sores were a symptom of Bechet's.

Follow-up questions:

1. Do you think it's necessary to get a Western Blot test done (I understand this is the most accurate), or are my past test results sufficient to rule out HSV?

2. Based on the fact that Yuri has HSV1 but has never had a cold sore, what are the statistical chances that I could contract it from him?

Thank you,

Debbie