Atypical Herpes

[Drained1982]

I have had herpetic lesions since Jan 08. One lesion at a time, never in the same location, always on left side of labia. As lesion heals, another often appears. Cycle continued before for a month and half (no relief with Valtrex every day or temporarily). It may disappear after a few days. Lesions sometimes leave temporary scaring and are bump under the skin (like a pimple emerging on the face) which leads to a lesion (never blisters). There is no sign of healing - appears, remains the same and then disappears and is sore. The first time, I went to my GP. She said it didn't look like herpes but she tested me (neg culture, neg blood HSV 1& 2). I was tested after that with neg. results. Finally, I tested positive to a culture. Also, lesions in my mouth (clustered blisters but no sores on my lips - not at the same time as the vaginal outbreak). The GP felt this could be herpes. I was sent to an infectious disease specialist.This doctor concluded that the culture was inaccurate and may not have been a true culture and symptoms did not look like atypical herpes. I was tested continually - I finally received a pos blood test hsv2 and neg hsv1, nega culture in May 08. I was sent to a dermatologist. The dermatologist said the lesion did not reflect any other skin condition. To complicate the situation more I was sent to a specialist in internal medicine. Autoimmune diseases run in my family (MS = mother, lupus = sister). I tested high pos to the c-reactive protein test and have many autoimmune like symptoms. I was told about the possible connections between STDs and autoimmune. My current partner since Feb 08 is still testing neg to 2, pos 1, my boyfriend before him same results. The man before that would be four years ago wasn't tested. I feel drained emotionally and physically and hopeless that a doctor will find a conclusion. Anything to shed a light on this bizarre situation would be appreciated. I have no relief & have seen so many doctors. Where do I go from here?

[H. Hunter Handsfield, M.D.]

Behcet's is an autoimmune disorder and one of the conditions I had in mind as well, as a condition that can cause both genital and oral ulcerations.  It's more likely for people of ethnicities originating around the Mediterranean, e.g. Turkey, Armenia, etc.  (I believe Dr. Behcet was a Turk.)  But there are many other possibilities, which is why referral to a clinical immunologist might be a consideration.

[MLWTR]

Your description of your symptoms makes me think of Behcet's disease. Here's a link to some information from the Mayo Clinic, if you would like some more information: http://www.mayoclinic.com/health/behcets-disease/DS00822/DSECTION=symptoms

[H. Hunter Handsfield, M.D.]

You describe a highly atypical case, if indeed you have genital herpes.  But I tend to believe you do not.  More important, you have seen several providers, including all the appropriate specialists, including a dermatologist and an infectious disease specialist.  In that context, it is unlikely that any distant online resource, including this one, can add very much.  But my overall perspectives follow.

Most of your symptom simply are not compatible with HSV-2 infection.  Genital herpes does not cause widely spaced lesions (most outbreaks occur in distinct, localized clusters, each outbreak within an inch of all the others); doesn't cause sores in the mouth; and can't be the cause of lesions that do not respond to antiherpetic drugs like Valtrex.  If you have HSV-2, you also have something else (or more than one other thing); herpes simply cannot explain most of what you describe.

The positive culture (or similar test) for HSV-2 plus the eventual development of a positive blood test of course suggest you might be infected.  However, it is equally likely that the culture test was false, as the ID doctor concluded. As for the positive blood test, if you will review many comments about HSV blood tests on this forum, you will learn that many weakly positive blood tests are false.  (For example, see http://www.medhelp.org/posts/show/593272.)  Most people with inconsistent HSV-2 blood test results -- i.e., negative sometimes and positive others -- are not infected.  Most likely the negatives are the accurate ones.  But if your doctor wants to pursue this further, you could have an HSV Western blot test to learn once and for all whether you have it.  WB is discussed in the same thread.

For these reasons, I tend to agree with the ID specialist that do not have HSV-2.  If you do, it still does not explain most of the "outbreaks" or any of your other symptoms.  Something else obviously is going on either instead of, or in addition to, herpes.  I don't know where you heard of a relationship between STDs and autoimmune diseases; there is none.

What to do now?  Most important is that you pick a single primary care provider who you trust and who understands your symptoms, even if s/he isn't necessarily a specialist in a particular area.  Then trust that person to evaluate things further as needed, including referral to appropriate specialists.  You might first discuss getting the opinion of a clinical immunologist.  (That usually means a rheumatologist, i.e. arthritis specialist; they are the ones who deal with autoimmune conditions.)

I hope this helps.  Best wishes--  HHH, MD