[TRIGGER WARNING] HSV 2 IGG Test both positive and negative. Could I please have suggestions?

[nh_user_1431120]

Hello, those of you with time and are kind enough to give this a look over and hopefully help bring me some peace. I’ve posted a trigger warning, just in case there are those that may be sensitive to what I’m going to ask and discuss.

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Alright, so here goes. Early in 2020, I was raped repeatedly in a domestically violent situation. My partner went from someone who was kind and seemingly trustworthy to someone who was dangerous and had no regard for my safety, who forced me into horrible things, unsafe sex included, and by the time I escaped, I had lost everything. As soon as I could get my bearings, I had myself tested for STDs, and thankfully came up clear, and was not pregnant. All were blessings, even if I am still struggling to shake off the psychological damage.

Eventually, I discovered that typical panels for STD testing don’t include HSV1 or HSV2 because of the nature of the viruses, and so the anxiety returned, and I set out to get tested for everything all over again, this time with a full and complete panel. I was discouraged from the test, but felt it necessary to own my own situation, at the very least so I could hopefully recover and someday be fully candid with a future partner.

My test results did not help me much. The test for HSV1 came up negative, which was a relief, but also a surprise, as I had expected that I would have this, if only because it’s claimed that anywhere from 50% to 70% of the population has it. Though, I’m aware that these tests are not very accurate, so there’s a 30% chance it was wrong to begin with, or something along those lines. Alas, I’ve researched, but I’m not a doctor, and know few things for sure.

The test for HSV2, however, came up at a reading of 1.02, low positive, out of a maximum index of 0.90. I resisted the urge to panic, and continued reading, finding that the Reflex test they did showed that I was negative, and they could not confirm the presence of the antibodies.

Here is a picture of the results, for assistance.

Lots and lots of exploration led me to find that results below a 5 have a 50% chance of being a false positive, that the test is highly sensitive so my past history of having chicken pox, which is in the same virus family may have triggered this, and that while it’s recommended to test again in the next 2 to 4 weeks, this would be to detect seroconversion, which is no longer a possibility, given that the encounter was over two years ago, and I have abstained since, and plan to continue to abstain. In fact, I found that false positives are so common, that Reflex testing like this has been made standard procedure, to help rule these out.

As far as I can tell, this is a very low positive, with readings up to 5.0 being a high risk of false positive. With the two tests, one being very low, and the other saying it’s negative, and my history suggesting that I’m not at risk for the number growing to proper seroconversion, am I safe to put this painful nightmare of feeling dirty and diseased behind me? I understand and do not wish to blame or shame those that are HSV positive, and do think that I would benefit from having this condition normalized, as would many others, but the pain of where this would have come from creates a powerful sting.

I do not mean to blame or shame others who are innocent in this and may be struggling with their own diagnoses. I also haven’t officially been diagnosed, as the doctors stated that they would call me to discuss my lab results if they found something, and did not, so I am definitely experiencing wishful thinking. I would like to talk to them, too, but this has quickly become expensive, as I’ve paid for it all out of pocket, and I believe I would need to do so again in order to ask them about my results. I suppose, at this point, for lack of comfort and safety in discussing this with trusted people, I am reaching out to strangers online who may have a better idea of what I’m looking at.

Thank you in advance for your time and consideration.

[nh_user_1410635]

hi
first of all sorry for that negative experience in your life. neither you or anyone should have to experience that
regarding your testing you are equivocal meaning it is not a positive
i could suggest to take another igg test for hsv 2 from a different lab and see how it goes
if that does not come negative then your next shot is the western blot from the university of washington
let us know what you decide and keep us posted it

[nh_user_1414284]

you should be fine. the CDC highly advises against blood IGG testing for HSV because it is so inaccurate and amibigious, especially with a result of 1.02. if you haven’t had any visible symptoms, I highly doubt you have genital herpes.

[nh_user_1431120]

I want to thank both of you for your kindness and assurances. The more that I research HSV1 and 2, the more that my views on it have begun to change, as it is treated with a lot of stigmas that really aren’t deserved, and it is steadily washing away the fear of whether or not I have it. My focus is instead on understanding its impact on our society as well as how the medical practice behind diagnosis and treatment works. This is a painful rash that itches and burns and might spread to someone else even if precautions are taken, but nobody is going to die, and though we are afraid, the perception that we are dirty and tainted is so much more painful than the infection itself. The emotional wounding and self-harm I’ve struggled with is been far worse than any potential breakout.

My research has shown me much of what you are both saying, and I will admit that I have lost faith in the regular practitioners and nurses who are explaining the results. I got a call from a nurse just today, actually, to discuss the results, and though bedside manners aren’t required, she had said quite coldly that I had tested positive. I worried that she might have been looking at another panel or something, and when I began to ask her questions, it turned out that she didn’t even know the specifics behind my results, nor the sexual history that I had explained. I had her relay questions back to the doctor instead, who did not even know that the Western Blot test was used for anything other than HIV. Of course, a practitioner calling me up to say that I am positive had me thinking that it was true, and I had it, but the more I explored the subject with them, the nurse claimed that it was refreshing that I had done my research, and the less I actually believed it was so static.

She was unaware of the high rate of false positives, or even that the Reflex test showed negative, and that the Reflex test existed because of the high rate of false positives. I was blown away - she didn’t even know about the Reflex test, and couldn’t explain it to me when I asked, as if someone else told her what they saw and left out details, and moved along. If anything, it has me appalled at the sheer number of individuals who get news that, to some of us, is heavy and painful, and it’s delivered as if it’s a fact when the reality is that the interpretation is actually far more delicate. This is a lot of money and emotional turmoil only to get professionals on the other end of the line who have less information than a common person doing research at wild hours of the night in a frenzy. I’m sure it’s way easier to give and expect the easy reception of bad news when it’s not your news.

Alas, I have learned more personally why it is that doctors do not recommend this and that the CDC advises against the practice of testing those without symptoms. I am grateful for the chance to have learned so much about this and feel that more education as a whole, especially on part of our practitioners, needs to be readily available. There are claims that this won’t change people’s behavior or that it’s worse to know when there are no symptoms, but I doubt that’s true. If I could get a confirmed diagnosis, it absolutely would change my behaviors, and we would have an easier time reducing the spread, as well as normalizing its presence. The sheer fear of it encouraged me to learn more so that I might protect others since I could not protect myself.

She did advise that I have another test in four to six weeks but was unaware of my sexual history when I expressed that the encounter had been over two years ago, and there hadn’t been another since. The sheer lack of information and continuation of details and facts tells me that this is all just standard practice and procedure, more so than anything actually tailored to my experience. She mentioned the low count and how it could grow, but that would be valid only for a recent infection, which it can’t be. Even if the infection were very old, the number of antibodies in my system doesn’t go down. It climbs to a number and then fluctuates in that range.

Before anyone hops in and says, “well, it could be on another part of the body,” while this is true, it’d be extremely unlikely. I haven’t hugged, kissed, or even touched another human since my last visit to the ER, and live in relative isolation. This is not for my fear that I have an STD and may spread it, but it’s been my own personal way of coping in relative safety.

My own interpretation here, reckless as this may be, is that I do not believe that I have it. I believe that the test is suspicious, and at some point, I would be aiming to get tested again, preferably with the Western Blot test, though I expect that it will take time, diligence, and a lot of searching for its availability since my provider didn’t even know it was a route that could be taken. I believe that I would be paying a lot of money for the clarity of mind, and though it will be nice someday, it is no longer an urgent fear or great point of stress in my mind. I would, at a very minimum, expect testing from another lab, at least for a higher quality of care. My sexual history is very low risk beyond that horrible experience, my entire panel suggests that it doesn’t add up (I don’t even have HSV1), and the second recommended confirmatory test that shows negative has me convinced that it’s reacting to my childhood experience of Chickenpox. I do not think IGG testing is worth the money and stress, and I do not think that my providers, well-intended and educated as they are, know anywhere near enough to diagnose patients with HSV 2 unless they can have a transparent conversation about how it worked and why.