Is testing accurate before first outbreak? Can HSV2 be transmitted other than sexually?

Sexual health
1

I have been tested for herpes and told I was negative by both my last PCP and my last gynecologist just two years ago. I was also screened for sexually transmitted diseases back in my youth too and was negative for everything (herpes and HIV were really in the mediat 3 decades ago and I went and had myself tested).

I was tested because I get a blistering rash on my upper butt area. I have Celiac Disease and a doctor suspected it was dermatitis herpetiformis (skin manifestation of celiac disease) and wanted me to take Dapsone for it. I wanted confirmation I had dermatitis herpetiformis before starting such medication. They did a biopsy and a PCR test on it at the dermatologist. To my shock, it came back HSV2. I am told that dermatitis herpetiformis is commonly misdiagnosed as HSV2. They say they are sure it is HSV2. My question is this: How accurate is testing before a first outbreak? 

I was tested many years ago and then two years ago. I didn't have so much as HSV1. I have not had sex in over 7 years. I have only had only one partner in 22 years. I used condoms with the partner I had 22 years ago. I used condoms with my last partner for the first 7 years we were together. 

I honestly do not know what to think. If it is HSV2 then either my current partner gave it to me or it got through a condom 22+ years ago only to lie dormant and surface on my buttocks 7 years since I last had sex. Besides, I have had so many doctors look at this blistering rash. I was told it was a fungus, DH rash, and now herpes. It was cultured once before and that was negative. I think that they are basing the HSV2 diagnosis on the recent biopsy taken.

​I realize HSV2 is not the worst diagnosis a person can be given. But I have had this latest rash for 30 days. I started Valtrex and took it for 10 days, twice a day. I had the rash throughout that period. If it is herpes, it is invincible. It did not go away any faster on the Valtrex than it would normally take it to go away. I have had an outbreak of this almost monthly for the past two years. It leaves a brown stain after it heals, followed by a reddish purple spot that takes months to fully go away. My butt looks awful. It is painful when flared. It burns and itches. It starts off looking like a red rash. It feels like a boil is erupting under it. Then it blisters.

​Please give me some advice. My current PCP told me that the virus can lay dormant for decades. I find it incredibly hard to believe that it would lie dormant, evade testing for years, only to show up now - and on my upper butt only, 7+ years since I last had sex. I guess anything is possible.

​I have been told so many wrong things over the years that my trust in doctors is not very high. I feel I need an expert in herpes to answer the question.

​I realize the stigma attached to HSV2 is ridiculous. Yet, I feel simply awful since hearing this news. I am married. My husband shows no signs of this. He feels he may just not know he has it and given it to me. He is being really cool, wants to think it was him that gave it to me. I wonder if I can even rely on the doctors to be right that I have it.

​The nurse at my doctor's office confided to me that she has it and she says it can be transmitted non-sexually. I did have a friend with HSV2 and I did borrow clothing from her but I hear the virus is fragile. Still, she and I were close friends. I did used to get this thing that they said was a fungus, which is exactly where the virus appears now. That is, I had an opening if the virus needed one. I also have a deficient immune system.

​Anyway, thank you for reading this and for any light you may shead on this.

2

A positive pcr swab of a lesion is very accurate, I'm afraid. In fact, that's the best test and swab test for herpes, as it looks directly for HSV viral dna at the site of infection. Negative pcr swab results can be wrong if the collection was inadequate or the lesion too old, but not positive pcr swab results.

There can be no confusion with another virus due to the nature of pcr tests. Perhaps the confusion you read about refers to visual diagnoses only. The blood tests for herpes are more problematic than the two swabbing options (and pcr is the gold standard of the two), and decades ago, probably even less sensitive and accurate than what's available now. Incidentally, the blood tests can only look for antibodies, not actual virus, so are an indirect method dependent on a normally functioning immune system.

3

Thank you very much for answering.

​I went to my new gynecologist yesterday and she gave me lots of information. She said my husband almost certainly gave it to me, that he probably just doesn't know he has it. That most people have very mild symptoms and many, many people have no idea they have herpes. 

​My gynecologist had a doctor in training with her. They both spoke to me, as did the nurse. None of them were at all perturbed by the diagnosis. They made me realize that it should not be stigmatized.

​She said that the virus can remain dormant but it would be extremely unlikely to have lain dormant as many years as it would have had to remain dormant in my case. It can be transmitted by other than sexual ways but also very unlikely to have been transmitted in this way. She said that considering so many people transmit and carry it unknowingly, she thinks my husband gave it to me. He and I had used condoms for many, many years and no doubt that is the delay in my getting it from him.

She said I needed to tell my husband that he needed to be tested.That felt a bit awkward. He was relieved that I was not angry at the thought he might have given it to me.​ He is obviously not worried about having it as it he had no idea he even had it.

​The doctor told me I needed to take the Valtrex at the first tingle of an oncoming outbreak. She told me she gets them on her lip. I decided I am grateful to get them on my upper butt. I get such bad outbreaks at least they are not visible. I mean, if I had to pick a place to get them, where I get them would be the spot.

​Anyway, thank you for your reponse.

 

4

I don't know why I wrote "to have it surface 7+ years since I last had sex. I meant to say have it be diagnosed 7+ years since I last had sex. Menopause is making me stupid.

​I only started having the outbreaks since I have been married. And then only in the last decade of a two decade marriage.

Anyway, I just reread what I wrote above and it was a bit confused, as am I these days.

​Thank you for your reponse.

5

You sound pretty coherent to me, so don't worry! Your gyno is right (not all docs and gynos are when it comes to herpes, believe it or not), although HSV2 really is a sexually transmitted disease. It is rare for it to be acquired by other means, like HSV1, and is not transmissible by everyday contact.

Did you first notice symptoms during the onset of peri/menopause, by any chance? Because that can trigger herpes outbreaks in some women. Just another thought.

6

No, not with peri-menopause. At least, I don't think so. It has only been the past two years that the menopause symptoms have been intense. I have had mild peri-menopause symptoms since my mid thirties. I probably had those ten years before the rashes appeared. I had the rashes probably, if I start with the arm rash, at least 6 years before the real peri-menopause symptoms started in. They have done the FSH test several times and only in the past few months has the number gone down to the post-menopause level. I still have some Estriodol going on. They gynecologist said I am right in the middle of it now. 

If there is any correlation between the HSV2 and anything it was that I had started working out pretty intensly at the time I got my first rash on my upper arm. That one when turned out to be spongiotic dermatitis. I had that rash first. Then the butt rash- which we now know as HSV2. I also get rashes under my eyes and once, on my face, along the smile line. I thought, at one time, that they were all related because they would appear simultaneously. In my mind the rashes are all related although they turn out to be different things. They appear, when they appear, usually together. I guess I should say they flare together. I think they are linked to my immune system. When I get glutened they flare.

​I have a really long history of wierd diagnosis. I have lost faith in most doctors at this point. Take my arm rash for just one example. I was told by one dermatoligist it was from medicine (at the time I wasn't on any). Another told me he had never seen anything like it but that in any event, it wasn't fatal, and to just go home and put lotion on it. The next dermatologist thought it looked like t-cell lymphoma and biopsied it. They still don't know what it is or maybe I should say what causes it- I have had that one on and off for 8 years. My immunologist prescribed a steroid ointment and it is almost completely gone. She said to use the ointment to keep it in remission but my skin was getting so thin. I could see wierd purple black marks. Showed those to two doctors. They had never seen anything like them before. Anyway, that is just the arm rash. My sister said that she had seen them once, much worse, on her best friend, who had HIV/AIDS. I have been tested for that and am negative, thank God. Anyway, I could fill a legal pad, a long one, with a list of the diagnoses given me over the last 20 years for various things and I have had at least 8 new diagnosis in the last two years alone. I now have a team of doctors working for answers. HSV2 feels like the worst of the things - but I realize that is a purely emotional reaction on my part.

​Anyway, thanks for the encouragement. My sister recommended the gynecologist to me. She really was competent. One thing about it, I have gotten pretty good at recognizing a good doctor when I meet one.

​I am pretty good at reading good advice when I hear it and accepting it too. Thank you for yours.

7

What a nightmare with all the doctors and conflicting diagnoses! I'm glad you at least seem to have a good gyno now, and I'm always happy to help with questions. The potential peri/menopause connection was just a thought I had when you mentioned menopause. Guess that's not it in your case, so perhaps the exercise and other issues contributed like you suggest. Triggers can and do vary from person to person. Anyway, good luck and may you continue your recent streak of finding good doctors!

8

Thank you.

​I think your thoughts about the peri-menopause might be correct for some women. The nurse at my current PCP's office suggested that I may get them so often because for some women, the outbreaks coincide with their menstral cycle. I had to point out that I haven't had a period in months.

​I think when I over exercised my immune system took a hit. Just as now, when I get "glutened" I get an outbreak (my neurological symptoms flare up too when glutened as does my joint pain and rashes and fatigue).

​I do have confidence in my immunologist and she is putting together the team.

​In all fairness, I think the problem has been that I am what they call a "zebra". People with immune system deficiencies like mine are called zebras. My current PCP says that the problem has been that doctors are taught not to see a zebra when there is a horse in front of them. That is, they are taught to look at what is the most probably reason for a diagnosis rather than something more exotic or rare. She said to me, "You, my dear, are a zebra". Now that the doctors know about my immune system, they are redoing all of the testing done the last two years - this time by top specialists. I feel like I am on a hamster wheel. I want off the wheel, but I feel like at last good doctors are on board so I will stay on for awhile longer.

​I also think the problem has been that doctors have so little time granted them by the entities that they work for that they are often stressed. Some had put it back on me rather than listen. My current PCP is a nurse practioner. I think she had more time to listen.  Anyway, she thought to test my immune system. To her credit, when the answers started coming, she knew she was in over her head and she sent me to a teaching hospital in a large city to an amazing clinical immunologist. The immunologist is the one that put the team together. I meet with the other doctors in the team this month.

​Anyway, thank you for encouragment.

​I do feel lucky. There are very many people out there that don't know yet what is wrong for them. I, at least, now know what the main problems are and have been. We are just figuring out now how the rest fits in.

​Answers are coming. For that I am grateful. That, even this HSV2 diagnosis, are important to have as I go forward. And, despite the stigma, I would much rather have HSV2 than dermatitis herpetiformis.

​Thank you again for your input. It helped.