Positive Culture, Negative PCR DNA 4 yrs later

[PrivateHopeful]

I had a small lesion in 2012 which a nurse practitioner swabbed after saying it looked like HSV. The result said HSV DNA 1 not detected, HSV 2 DNA was detected.
Background: At the time I was experiencing the first of my now 3.5-4 years long bout of “vaginitis”. I had consecutive bouts with yeast infections that would not clear up, and sent off numerous cultures and a punch biopsy testing for yeast or anything else. that biopsy just showed chronically inflamed skin.

I took the news very badly, as this result came at the end of a very painful and messy divorce.

I never had other symptoms typical to this diagnosis, except literal daily itching for at least three years now, which I have been told by a few medical professionals are not related. Once after I had what felt like a “slit” of skin about a half inch long that had cracked open which healed after a couple of days.

I got a iGG blood test in 2014, hoping I initially had a false test result. The result of that test shows HSV 1 value .11, and HSV 2 value 1.77. The nurse told me this means I have both types, which from research believe is very incorrect.

About three weeks ago I went to my primary care MD and she ran a PCR DNA blood test, and I was negative for either type. She says I should take this test as definitive in a follow up email after the visit.

Can I rest assured in the PCR DNA, which I am reading is much more accurate than the standard test? I read that it will show up on this test whether there is shedding or not. To hear consensus that I was perhaps falsely diagnosed would be life changing.
I have not even gotten the bill yet for the PCRDNA test which I’m told is on the expensive side. Is the Western Blot necessary after the negative PCR DNA test?

[Terri Warren]

You’ve had a variety of bad information.
So we know you most likely have HSV 1 genital infection. The PCR swab test that you had done is very rarely mistyped. I know it is a PCR swab test because the result indicates DNA detected vs. HSV isolated (indicating a culture). The HSV 1 IgG blood antibody test misses one of four HSV 1 infections, compared to western blot, the gold standard for herpes antibody testing. So it is not a complete surprise that your HSV 1 IgG is negative.
I don’t know if the other symptoms that you have are herpes related or not, the only way to know that would be to swab test these slits. HSV 1, statistically, recurs about once every other year, though there is great variability here. Daily itching is not at all consistent with genital HSV 1 infection.

The positive HSV 2 antibody test at 1.77 has about a 70% chance of being a false positive. Anyone who has a result that falls between 1.1 and 3.5 needs a confirmatory test (see the 2015 CDC STD treatment guidelines for this reference). The western blot would also clear up the question of your HSV 1 infection. I highly recommend this test for you. our clinic can help arrange this test for you – it is not available through traditional medical laboratories.

The PCR test should be used ONLY for swab testing, never blood testing. Herpes is not a virus that is carried in blood except, perhaps, for a very few people with first episode infection. To run a blood test using PCR for herpes in the healthy adult is a big mistake because virtually no one would have HSV in their blood. If I was you, I would not pay for this test.

Please let me know if you have other questions.

Terri

[PrivateHopeful]

I suppose I’m not fully understanding how it’s very rarely mistyped yet you believe it’s likely HSV 1 of the genital variety. HSV 1 was not detected, HSV 2 was. I reading so much information from reputable sites and it seems all too conflicting, other than test results can be and often are incorrect.

I am appalled at the misinformation I have gotten by at least three different medical professionals. I was feeling a huge sense of relief from the test I had on the blood.

What would be involved in getting the western blot ordered? I live in Louisiana, and I assume this would all be out of pocket.

As for the vaginitis I am getting copies of my two punch biopsies and bringing them to a new dermatologist shortly. I have recently found some significant relief using jock itch powder. The reason I brought that up is because I read that a fungal infection, or a yeast infection( of which I had many at the time) can mimic HSV visually at least and can be a reason for misdiagnosis. All the nurse would tell me about the results on that is that nothing showed up except clogged pores (skin tags) and chronically inflamed skin. I thought it might be related to the one lesion, and subsequent cracked skin once a couple of years later. I also don’t know if this is relevant to the question at all, but the same NPR diagnosed me with PCOS after fasting glucose tests and elevated testosterone results, along with elevated “follicles”, I believe.
I don’t know if this is relevant either, but I also have the Murens IUD. I have often wondered if it was the cause or contributor of the vaginitis, which could or could not be related to the diagnosis or misdiagnosis of the HSV.

My apologies for rambling a bit I’m typing on my phone so it’s difficult to keep it in proper structure when you can’t see the entirety of what you r previously written on one screen.

[Terri Warren]

Yup, I read it wrong. HSV 2 positive, so sorry about that. I really missed that. My error completely.

So now my opinion of the blood test is different. If HSV 2 was found in the lesion, then the antibody test of 1.77 , though it has the possibility of a false positive because of it’s number, is likely positive and it fits with the swab test results. You could do the western blot still, yes out of pocket, but honestly, between the positive HSV 2 PCR and the positive HSV 2 antibody test, I believe that the antibody test is correct. The western blot where you live is $250. In my opinion, this is a bit of a waste of your money. I don’t think the PCOS is related to the herpes issue. Yes, yeast can mimic herpes. Itching, sometimes cracking of the labial skin

Again my apologies for misreading your post. Please let me know what other questions you might have.

Terri

[PrivateHopeful]

At this point I have little faith in any information I am receiving. I appreciate your prompt response and don’t intend any offense I’ve just had some very bad information related over a few years.

If I were to submit to the Western Blot, is there ANY percentage of a chance in your opinion that it could come back negative? This has caused me such angst. Would this test be a “swab” test, and who would have to perform it? How long would it take to get results, and how accurate is it?

Also, on the culture test next to HSV 2 detected it has the letter A next to it. Unsure if that has any significance. There is nothing on the page to indicate what that means, if anything.

[Terri Warren]

No offense taken! I feel like I just fed into your fear of “off” information.
The western blot is an antibody test not a swab test. It looks for all the proteins associated with the antibody for HSV 1 and for HSV 2. It is not a swab test. It is performed from a blood sample. it is 99.5% sensitive for HSV2 and 100% specific for HSV 2 – that is, it picks is up 99.5% of the time if a person waits long enough to be tested (4 months from any suspected infection date) and when it says it is positive for HSV 2, the likelihood it is correct is 100%

As for the chances it could be negative I think that is highly unlikely.

I would guess that the “A” stands for abnormal, but I”m not sure.

Terri

• This reply was modified 7 years, 3 months ago by Terri Warren.

[PrivateHopeful]

I’ll think on this. I honestly feel like I would have been better off emotionally never to have been tested at all, but I’m clinging to the small hope that I could possibly get the result I would wish for. It really comes down to either I possibly carry it or I definitely do.if I decide to get the WB test do I just call your offices? And would I get s detailed and explanatory report?

[Terri Warren]

I get that you feel that way, that’s completely understandable.
But it is likely that at some point you will get another lesion and you would likely have wanted to know what that was. And what if you found you had herpes by infecting someone else? Would that have been better? I know these are tough questions.

Yes, you jut contact our office and they set up a phone consultation with you and me. What you would get is a simple report – it would say that you are either positive or negative for HSV 2. There are no numbers associated with a western blot. A few people get an indeterminate on their western blot – the test can’t be certain about whether it is positive or negative but UW has recommendations about how to interpret those as well.

Given the lesion, th positive PCR swab test for HSV 2 and the positive (albeit low positive) antibody result I would be surprised if you were negative.

Terri

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