Atypical Herpes: Frustrated with answers

[Amy1985]

After several false-negative blood tests and false-negative cultures I was recently diagnosed with genital herpes from a positive culture. The problem that I have been having is that the breakouts never seem to subside. I get one maybe two small bumps (1mm maximum). The bumps later become raw and eventually disappear. This normally lasts about week sometimes much longer. I have about 1 or 2 days of relief and then the one or two bumps return in the same spot. There is little to no discomfort (if I rub the area it stings when raw). I spoke with a medical professional and she told me the infection was acquired very recently (it's been 4+ months since contact) and over time it will be less constant and will become more classic.  From the research I have done this is not a normal progression of herpes. By saying they will become more "classic" does that mean they will get worse/more typical over time? Do people with mild outbreaks normally have them all the time? I asked about my negative blood tests for both HSV 1 and HSV 2. She said they should have been positive by now. I asked twice to be referred to a gynecologist or someone knowledgeable about STD's and she finally referred me to a family physician. The MD examined the area and said the bump was not typical of herpes. She said it was common for people to develop antibodies too low to be detected on a blood test and that these low antibodies would correspond with my very mild outbreaks. Is this true? If so why do asymptomatic people test positive on blood tests then? Again from what I read, I understood that it was very rare not common for antibodies to go undetected after 3-4 months.

I am confused by these answers vs. what I have read from reliable online sources. I know cases vary from person to person but I would like to be able to sit down with a knowledgeable medical professional. Is this worth pursuing or is it best to just accept that I am not following the norm and to hope it gets better with time?

[H. Hunter Handsfield, M.D.]

You describe a very frustrating situation and I will try to help.

As you already understand, you present a highly atypical collection of circumstances.  In fact, things are so atypical that I have to think that your positive culture test in fact was wrong.  Please double check with the provider who ordered the test and perhaps the lab that performed it.  If it was truly positive, the virus isolate could have been retained and could be rechecked by another lab.  Also, it is important to know the virus type, which you don't mention; that also can be determined from a positive culture. Sometimes a culture is requested by the provider, but another test (e.g., direct fluorescent antibody, PCR) is actually done by the lab; both of those tests can give false positive results.  Also, those tests sometimes do not distinguish HSV-1 from HSV-2, perhaps explaining why you didn't mention the virus type.  And of course even a positive culture can be wrong if a patient's specimen is mixed up with someone else's.

But let's assume your culture test indeed is accurate and that HSV was isolated from your genital area.  Even so, it is clear that most of your symptoms are not due to herpes.  In other words, I believe you have asymptomatic HSV infection, plus something else causing your genital symptoms.  You don't say whether you have been prescribed antiherpetic therapy, e.g. valacyclovir or acyclovir.  If so, absence of major improvement is additional (and very strong) evidence against herpes as the cause.  If not, you should try it now.  I predict treatment will make no difference in your symptoms.  But if it does, it will prove me wrong and you would obviously benefit, both from resolution of symptoms and from greater certainty about the diagnosis.

To some of the specific questions you ask:  Absence of antibodies 4+ months after exposure and onset of symptoms indeed is strong evidence against HSV, but not proof.  Your provider is wrong about it being "common" for people to have HSV and not develop antibody. It is also wrong that low antibody levels go along with being asymptomatic or having mild symptoms.

Despite referral to a provider supposedly knowledgeable about herpes, I think you're not quite there yet.  If you haven't seen an infectious diseases specialist, that might be a good step.  Also, I strongly suggest you contact the American Social Health Association's Herpes Resource Center.  (Go to www.ashastd.org and follow the links.)  They can provide highly expert and sensitive, personalized telephone counseling.  And HRC maintains lists of herpes-knowledgeable providers and might be able to suggest one near you.  (Full disclosure:  I am on ASHA's Board of Directors.  But it's a nonprofit organization and I receive no income or other direct benefits from ASHA.)

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

[Amy1985]

Thank you very much for your reply. Your comments were extremely helpful and have shed light on a very confusing situation.

I failed to mention that I was treated with valacyclovir after the last culture came up positive. It was a 7 day treatment and it did not appear to relieve my symptoms. The raw bumps continued for several days after the treatment, only to reappear again. I haven't taken it since and I will now pursue suppressive therapy to see if that helps. The physician explained that Valtrex is not effective unless it is taken immediately following the onset of an outbreak. Is this accurate information?

I, also, failed to mention that the culture was typed for HSV-2. The physician said it was an immuno-fluorescent test from a clone of cells. I apologize, I don't remember her exact wording. Is this, in fact, a true viral culture?

Just as a side note, I notified my now ex-boyfriend (he had no symptoms) after my diagnosis and he followed up with testing. He came up positive for HSV-1 and negative for HSV-2. The doctor explained that he most likely contracted HSV-1 during childhood not through sexual activity. With that said, my exposure before him goes back to about a year now (last May).

I will contact the ASHA and follow up on the diagnosis with a specialist in hopes of resolving this.

Thank you again.