Recurrent outbreaks -is it herpes & what treatment

[sushinecracker]

I am a 40 year old female.  About ten years ago, I was diagnosed with herpes and had my first severe outbreak. The doctor swabbed my sores, but told me on the spot it was herpes and prescribed acyclovir.  The outbreak was in my vaginal area and the sores eventually traveled up the nerve line towards my belly before the outbreak cleared.  From that point on I had recurrent outbreaks, but the sores recurred on my anus.  Since as long as I can remember I had an outbreak often.  Recently (for the past 2 years), the outbreaks are continuous.  Usually at night or early morning I feel the itching,tingling, burning sensation.  It often wakes me from sleep.  Then the sores come out, they look like small lesions or sores that scab over and heal within a day or 2. The sores were almost always around my anus but now also come on edge of vagina.  Valtrex made the sores worse.    Recently my OBGYN suggested I try Valtrex again. It made the outbreak worse.  I stopped the Valtrex and the outbreak cleared.  He suggested I see an ID doctor.  This doctor looked at my lesions and said he was not convinced it was anything.  He also did blood work and took stool samples.  He said I do not have genital herpes. I am positive for HSV- 1 and not HSV-2.  I do not have HIV.  He said my immune system is working properly, I do not have herpes and I should go and be happy.  I am very confused since I understand HSV-1 can cause genital herpes.  The ID doctor says that the reason the Valtrex did not work is because what I have is not herpes.  He also said that I would not have an outbreak all the time if it was herpes.  I am suppose to go see the ID doctor when I have a sore so he can culture it.  He said he cannot take a culture from my small lesions. I have tried numerous treatments over the years with no success. What is the best doctor for this situation? I feel like neither my OBNGYN nor the ID doctor have any interest or insight into this issue.  Other than these outbreaks, I am very healthy.

[Terri Warren, RN, Adult Nurse Practitioner]

My suggestion would be to see a dermatologist

Terri

[Terri Warren, RN, Adult Nurse Practitioner]

You're not going to like what I have to say, but I agree with the ID doc.  First of all, did you have a positive swab test when you were first diagnosed, or was it negative?  That's important. If it was positive for HSV 1, then you can ignore everything else that I'm going to say from here on out.

Next, you are describing something that physically is not remarkable if the doc couldn't take a swab because the lesions were so small.  Next, HSV 1 genitally recurs very infrequently, perhaps an outbreaks every other year, on average.  You are describing something very much more frequent.  Next, herpes is not continuous, it is intermittent.  Next, Valtrex would never make herpes worse.  It's only function is to interfere with viral replication of herpes.  If it was herpes, the Valtrex would make it better, and it has no chemical properties that would make herpes or anything else worse.    I'm certain it isn't that the providers aren't interested, it is that they probably honestly believe you you don't have genital herpes.  

To be extra certain, I would suggest that you ask one of them to send you home with PCR swabs and vials, and when you get your symptoms, gather your own swabs from the area that you think is herpes.  Then you can bring the swabs back into the office

It might be useful for you to know, as it pertains to your earlier diagnosis, that when clinicians look at something and call it herpes based on physical exam alone, they are wrong one out of five times (based on two separate studies).  I fear this may have happened to you.

Terri

An ID doctor or OB are the two I would have suggested for you.  Now the next step to believe the labs tests, the statistics, and the providers, and get over believing that you have genital herpes.  You've believed this for a long time, and have interpreted symptoms are being caused by herpes.  But I really don't think, based on everything you say, that you do have herpes.

Terri

[sushinecracker]

I finally opened my mind to alternative diagnosis to herpes and went back to the ID doctor, convinced I had LGV.  I know it is rare however, when I put all the pieces together it made alot of sense.  The ID doctor took another blood test and prescribed a 3 week course of doxycycline.  Within 4 days all my sores cleared up completely.  I felt like a new person and could not believe it.  I completed the 3 week course without missing one dose.  I went back to the ID doctor after about 4 weeks, still clear.  He said I was negative for the Chlamydia trachomatis antibodies but said it was probably just some bacteria and the doxycycline killed it.  He decided I was cured.   About a week after that visit, my outbreak came back - sores / lesions and abscesses under the skin.  I have an appointment with my OB/ GYN next week and another one with a dermatologist  that deals with STD's, in over a month.  Any ideas or suggestions what this might be or how I could treat it?  Now that I have been clear for a few weeks, having the sores again is extremely uncomfortable.

[Terri Warren, RN, Adult Nurse Practitioner]

Hmmmm.  You could check with the lab, are they using the same lab?
Terri

[sushinecracker]

Thanks - I did, but they no longer have those records since it has been so long.

[Terri Warren, RN, Adult Nurse Practitioner]

I'm afraid I'm unable to venture a guess about what it might be.  Check with the first provider on the results of the swab, that may help you.

Terri

[sushinecracker]

When I had the initial outbreak, I remember the doctor taking the swab, but I cannot confidently say, I recall the results from that swab test.  I appreciate your objective and educated opinion.  I will follow up with the ID doctor and ask for the PCR test if need be.

Do you have any idea what this might be?  From everything I have ever read, I truly believed it was herpes and that each person is affected differently.  Plus when I was originally diagnosed, it made sense because I had just slept with my boyfriend at the time and it was with in about a week or 2 of intercourse with him that I had the outbreak.  He later admitted that he had herpes.

Some other things I have noticed about my outbreaks which may be useful, is that they seem to be worse and or brought on by stress, red wine, alcohol in general, lack of sleep.  The only time they have ever completely cleared was when I was travelling in rural China and my diet was very limited - mostly rice, vegetables and some meat.

Thanks very much for your help.