Desperately

[devastatedgurl]

I first want to say that this forum has helped me better understand this virus and has offered more information than my own doctor. I knew very little about HSV2 and sadly I think that’s true for most of the general population. I apologize for the lengthy post but I want to be as detailed as possible.

Back in 2012 about two weeks into a new relationship I had gone to see my OBGYM for my annual wellness exam. I told her I was dating someone new and she suggested a full panel STI test that included HSV (I recently found out this is not part of the “standard” testing). My test were done through Quest and the IGG results were as follows:

HSV1 – >5.0 H Positive
HSV2 – 0.78 Negative

I was a bit nervous about the results but was relieved to find that I was cleared for all STD’s and I already knew about my HSV1 status. This relationship continued on and off until late 2013. No further testing at this point. Fast forward to mid 2014, almost a year later, I start dating someone new. We discussed sexual history and mutually decide it was safe for us to continue without protection. About a month into this new relationship I start to feel what seems like a yeast infection with mild itching and burning. It was uncomfortable but figured it might have been due to the new birth control pill I had stated taking (my insurance switched to another generic form) so I decided to self-medicate with OTC treatment and the symptoms seemed to subside. Two weeks later things between my ex and I resume sexually. No protection, very risky and foolish, I know.

Within a week the itching returns except now with discharge, no smell. I’m now suspicious and worried and its right before my cycle is to begin so I wait until it passes and I go see my OBGYN. She performs a visual exam, takes swabs and notes no sores or lesions. She orders another full panel STi test. She suspects yeast and sends me home with Diflucan. A week later the IGG results from Labcorp are as follows:

HSV1 – 36.60 H Positive
HSV2 – 2.18 H Positive

POSITIVE for HSV2. I was devastated. She sends me home with antivirals for possible future outbreaks. To date, I have not experienced any sores. I think I would know if I was having an outbreak because I’ve had HSV1 for years and I’m familiar with the symptoms and sores. These are very painful and I doubt I would be spared a painful genital HSV2 primary outbreak. Since my diagnosis, I’ve been hypersensitive to every sensation in my vagina and constantly inspecting for sores. I have been to my OBGYN at least 6 times for visual exams with the most resent being just a few weeks ago as I was certain I was having some sort of outbreak. I had itch, some burning and discharge. I was certain this time she would visually confirm the presence of sores and get a confirming swab. She noticed the discharge but could not confirm any sores present. Symptoms started on a Sunday and by Tuesday morning I was in my doctor’s office for a swab. No anti-viral meds at this point as I didn’t want that to interfere with swab test. I was certain it would be positive and prepared myself mentally. After the swabbing, I took the anti-virals for 10 days as instructed by my doctor who suspected a possible outbreak. I waited for sores to appear but none ever did. Swab test was done by Labcorp and results are as follows:

HSV Culture /Type – Negative
No HSV isolated

A negative result was not what I expected. In search for answers I contacted both partners and made them aware of my status (this wasn’t easy). When I asked whether HSV had been included in their previous STI tests, not one could say for sure. Not surprising, each one confirmed they had NOT been tested for HSV. After learning about my status, they agreed to test. At my request, they took type specific IGG tests. Here is where I’m baffled. They both came back with NEGATIVE results. How is it possible that my only possible exposures can be negative? I even went as far back as contacting the partner I was with prior to my negative result thinking that it might have taken me longer to seroconvert but he was ALSO negative. How is this possible?

RECAP:
11/2011 – last sexual encounter pre HSV test (reference point)
8/2012 – Negative; 2 weeks post encounter with first partner
2013 – No testing, no new partner
11/2014 – Positive; 1 month post encounter with second partner; 2 weeks post encounter with returning first partner

QUESTIONS:
1. Scenario one: Had I been infected prior to my negative result, assuming longer seroconverting process, and after several instances of unprotected contact with future partners, wouldn’t it be conceivable that I would have passed this on to at least one of them?
2. Scenario two: Assuming I was recently infected by the second partner then a few weeks later had sexual contact with my ex, wouldn’t my ex have developed symptoms, lesions, or at least antibodies by 4 months post exposure since I would have been highly contagious during the first few months of infection?
3. Can anti-viral meds skew the IGG test and render a negative result? I ask in case any of my partners was taking any at the time they tested, although I don’t believe that to be the case.
4. Are there any other medicines that you know about that can skew the test results? Again, in case any of them is taking medication.
5. I’ve read it’s possible to have lesions internally on the cervix, how will I know if I’m having an OB? What are the symptoms when this happens? How will I know when they have healed since I cannot see them? Do they bleed?
6. Do my symptoms sound like HSV2 to you?
7. Is it possible that something else could be triggering my positive results?
8. Do you think I should consult an STD specialist? My OBGYM suggests a neurologist as I’ve had some leg pain (I don’t know if the leg pain is related or not).

I should also mention that in reading through this forum I became aware that low positive values, without the presence of sores, could potentially be a false positive. That being my case I ordered a WB through the UoW and the results came back positive. There was no value, just the word positive. Here is my question:

9. Has there ever been a case where the WB was wrong? If yes, how often does this happen?

I don’t understand how it’s possible for me to have a positive result when my only possible exposures are all negative. This is all I can think about now. I honestly feel like my life is over. I am severely depressed, confused and desperate for answers. I don’t know who else to ask to about this.

[Terri Warren]

1. Scenario one: Had I been infected prior to my negative result, assuming longer seroconverting process, and after several instances of unprotected contact with future partners, wouldn’t it be conceivable that I would have passed this on to at least one of them?

That could be, yes. Your HSV 2 was a high negative at .78 and you could have been in the process of serconverting, yes,

2. Scenario two: Assuming I was recently infected by the second partner then a few weeks later had sexual contact with my ex, wouldn’t my ex have developed symptoms, lesions, or at least antibodies by 4 months post exposure since I would have been highly contagious during the first few months of infection?

Have these two partners been tested and are both negative, is that what you are saying?

3. Can anti-viral meds skew the IGG test and render a negative result? I ask in case any of my partners was taking any at the time they tested, although I don’t believe that to be the case.

It can, yes, if taken early in the infection and continuously.

4. Are there any other medicines that you know about that can skew the test results? Again, in case any of them is taking medication.

no

5. I’ve read it’s possible to have lesions internally on the cervix, how will I know if I’m having an OB? What are the symptoms when this happens? How will I know when they have healed since I cannot see them? Do they bleed?

Lesions can be present on the cervix, yes, and you might have a watery discharge but no bleeding normally. And you may have no symptoms whatsoever.

6. Do my symptoms sound like HSV2 to you?

It’s difficult to say. Herpes symptoms in people who already have HSV 1 can be very subtle or non-existent.

7. Is it possible that something else could be triggering my positive results?

I think since the western blot is positive, no.

8. Do you think I should consult an STD specialist? My OBGYM suggests a neurologist as I’ve had some leg pain (I don’t know if the leg pain is related or not).

A neurologist might help you with leg pain but I doubt that they can help you with genital herpes. And I don’t think you need an STD specialist either. With a positive western blot, you are infected with HSV 2 and infectious to others. I wish I could give you some realistic hope but that would be misleading for you. I think you are a person whose HSV 1 antibody is really keeping HSV 2 symptoms very much under control. Could itching be a mild herpes presentation? yes, it could be. If you are going to swab, I would recommend that you use PCR rather the culture. Culture misses almost 75% of true positives compared to PCR. However, the reality is, you cannot know when you are infectious every time, even if you can identify an outbreak. So now the task is to begin to respond in a most productive way to having the HSV 2 infection. There is really not too much left to be confused about, except how to identify specific outbreaks. The next step is to recognize that this is a manageable though socially difficult infection. It is not some kind of judgment about who you are but rather a virus that didn’t do some sort of personality inventory to decide to infect you or not. It just looked for an opening in your skin. Your life is definitely not over but only you can make it better by learning to think differently about herpes. If you were my patient, I would recommend a few things:
1) read the free herpes handbook on this website and if you want more info, get the bigger book as well. Read about the psychological implications and how to think differently about herpes
2) identify a cognitive behavioral psychologist in your area to try to work on some of your beliefs about herpes so you can change your thinking that will eventually change your feelings.
3) tell someone in your life that you have this – a good friend, a sibling, a parent. this is a big secret to carry around all by yourself.
4) begin suppressive therapy if you are going to be having sex with uninfected people – it will cut the risk in half of infecting them and you will feel better about lowering the risk.
5) try to develop perspective. Right now this seems pretty awful but remember that there are few general health implications from having herpes and those can be managed easily. You do need to work on the psychological and social issues. You don’t need chemotherapy or radiation or even any medicines with bad side effects.

I should also mention that in reading through this forum I became aware that low positive values, without the presence of sores, could potentially be a false positive. That being my case I ordered a WB through the UoW and the results came back positive. There was no value, just the word positive. Here is my question:

9. Has there ever been a case where the WB was wrong? If yes, how often does this happen?

I would say no, false positives don’t happen on the western blot.

terri

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