[Question #9869] Herpes Question

28 months ago

I was diagnosed 25 years ago with HSV-2 (visual) and maint Valtrex 500mg daily. No outbreaks since and testing last week.
Blood Tests performed: HSV Type-1 Specific Ab, IgG (HerpeSelect Type 1 blood test)and HSV-2 Type Spec Ab, IgG w/Rflx
Note for HSV-2: Negative indicates no HSV-2 antibodies detected; Positive indicates HSV-2 antibodies detected; Equivocal & low positive HSV-2 screens may be false & are reflexed to supplemental testing; HSV-2 Type Specific Antibodies, IgG w Rflx (Chemiluminescent immunoassay); Reflex of equivocal & low positive HSV-2 type specific IgG to a membrane-based immunoassy
My results are NEGATIVE (both HSV-1 and HSV-2).
Question: I've had HSV-2 for so long, is it possible that I got a false NEGATIVE and/or that I just don't have antibodies anymore?

Terri Warren, RN, Nurse Practitioner

28 months ago

I think the most likely thing is that your diagnosis was incorrect. I don't think it is likely that you don't have antibody because you've had herpes for a long time, no

The IgG test for HSV 2 picks up 92% of infections compared to the gold standard western blot.

My only concern is this: have you actually taken Valtrex 500 mg every single day since your visual diagnosis? Have you had any longer periods off the medication?

Terri

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28 months ago

I’ve never stopped the medication for fear of having an outbreak, and am very vigilant about taking it daily. I DO go through periods where I’ll take it every other day if I’m not stressed, but I also have secondary adrenal insufficiency (steroid dependent) from long term prednisone use, so if I believe I’m at risk for any type of crisis, I increase my frequency to daily.

In fact, I’ve had a pregnancy with major complications (preterm labor at 22 weeks, late cerclage, strict bestest for 9 weeks, mag x 4 and once being toxic, delivery at 31 weeks with abrupt placenta, DIC, and blood clots after delivery)…and still took meds with no breakthrough outbreaks.

I must admit that after 25 years of taking valtrex, I’m shocked to test negative, but the blood test didn’t exist when I was diagnosed.

Is there a more definitive way to ensure that the latest result was correct, and that I’m in fact, NEGATIVE, without going off the valtrex and potentially allowing an outbreak for a culture swab?

Terri Warren, RN, Nurse Practitioner

28 months ago

I think it is extremely unlikely that Valtrex could keep you from making antibody for 25 years - I've seen it for two years, but 25? I doubt it. are you just adamantly opposed to coming off Valtrex and potentially have an outbreak that could be swab tested and then you could start meds right away again? Again, I think it's highly unlikely that meds could keep you from making antibody this long. So if we believe that, then I would suggest your next move it to take a western blot antibody test with the University of Washington - you can work with your provider on that or with me.

Terri

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28 months ago

I want to be honest, so I’ll say that my original question had too many words and I had to trim it down, which included the part that my partner of 8 months recently had a “rash” and we agreed to both get tested.

I never told him about my diagnosis, and when it happened, I told him my entire history and that I had not been “transparent” before.

I’m feeling shame and guilt, but also confusion because I was 100% certain I would test positive for HSV-2. When I didn’t test positive for anything but he tested positive for HSV-1, I felt something was surely wrong with my test or body.

I’m willing to do any type of testing necessary to determine my true diagnosis, but I am extremely fearful of going off Valtrex, not because of my relationship, but because of my semi-fragile health status. (I should note that he plans to be re-tested in 6 weeks for confirmation).

My insurance will probably pay for the western blot, but I’m wondering if I should do both HSV-1 and HSV-2, even though I’ve researched that false negatives for HSV-1 are only 1%.

Whatever you think is best, I’ll do, because it’s not just my body now, although 25 years of valtrex on my liver is a “tough pill to swallow” if I do t have it. Pun intended.

Let me know your thoughts on the HSV-1 idea (and HSV-2), and if you believe I should get the blot, I will, hopefully with insurance coverage.

Terri Warren, RN, Nurse Practitioner

28 months ago

Unless you live in Washington, insurance is not going to cover your blot so that may be off the table for you?

When you say that your boyfriend tested positive for HSV 1, was that a blood antibody test or a swab test from the rash? Was a swab test done of the rash? tf you want my help you can reach me at westoverheights.com. The cost of all of this through me is going to be around $400 -$450, including the visit, the test itself, the blood draw somewhere and the shipping to UW

Terri

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28 months ago

He had the same blood testing I had, which is the HSV Type 1 specific Ab, IgG (HerpeSelect Type 1 blood test). I researched that there is a high false positive rate, but he has also not responded to valtrex.

Is the blot testing $450-ish TOTAL? Although I’m certainly not made of money (I’m a nurse educator at a Texas medical school), it’s information with which there is is no associated monetary value for me, especially for HSV-2.

I went to your website, and am not sure what I should choose to begin the testing process, in the most cost effective manner. Can you provide guidance?

Terri Warren, RN, Nurse Practitioner

28 months ago

Just follow the link to "get a western blot". It will take you to a place where we can have a telehealth visit and I'll provide what you need to get the blot. Or you can certainly work with your own provider to get this test done as well.

Terri

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