Bloodwork says Low(ish) HSV2; Swab says GHSV1; Strange symptoms in mouth

[confusionsadness]

Dear Teri, Thank you so much for all of the wonderful work you do here!!!!

Negative HSV1&2 IGG test in June.

9/14 – Noticed enlarged, tender lymph node in left groin. Went to a clinic for STD screening for bloodwork.

9/15 – Noticed tiny bump, left side of vulva. Visited ObGyn 9/16. She didn’t think it was herpetic but did more bloodwork.

9/18 – Had bump on my vulva swabbed for culture at Planned Parenthood. Doctor didn’t think it was herpetic, but started me on Valtrex “just in case”: 1gm/BID x 10 days.

9/19 – My lips (on my face) felt dry and tingly. I hoped it was just a side effect of Valtrex.

9/21 – Noticed tiny bumps on left side of lip. Tongue and roof of mouth sensitive. Symptoms of geographic tongue appear. Later in the day, receive results of my blood work.

Drawn 9/14:
LabCorp, HSV 1 and 2 – Specific Ab, IgG
HSV1 IgG, Type Spec <0.91
HSV 2 IgG, Type Spec 3.77 High

Drawn 9/16:
Manhattan Labs, HSV Type 1/2 AB, IgG
HSV Type 1 AB 0.11
HSV Type 2 AB, IgG 2.97 High

[confusionsadness]

(cont.)

Based on these results, I postulated I had a relatively newly acquired HSV2 and that the bump on my vulva was most likely HSV2; and had spread to (or simultaneously infected) my mouth.

9/22 Vulva bump pretty much gone, but mouth problems getting worse. Nothing on lips other than barely visible pinprick bumps on the left side, but tongue and entire roof of my mouth is sore. Over the next 10 or more days the sensitivity continues. Pieces of skin seem to be peeling off the roof of mouth. Geographic tongue fades, but there seem to be fissures on tongue. No classic looking cold sore emerges.

9/28 Final (10th) day of the high dose of Valtrex. I switch to 500 mg/day.

10/1 Mouth symptoms becoming increasingly worrisome. I have my PCP swab roof of my mouth for PCR test. Still awaiting results.

10/2 Recieve results of culture from the vaginal lesion. I am SHOCKED, because I was expecting the swab test to show up as HSV2 — or as nothing. Instead they were:
HSV Types 1+2 Culture (SP)
Result: Herpes Type1

10/7 Mouth symptoms continue, but have improved. Continue Valtrex 500mg/day

So, that’s my timeline. I’m quite confused by the positive culture for GHSV1 as well as my oral symptoms (which I’m guessing are OHSV1).

Some additional info:
20 years ago, a after making out with a guy (I can’t recall exactly what we did but it did not include oral or vaginal sex — I was still a virgin) I experienced for the first time some very unpleasant lip symptoms. They were pinprick bumps on my lips (the same as what I experienced this time, but they were worse). They were tingly/itchy and uncomfortable, but never blistered, scabbed, or took on appearance of a classic cold sore. Can’t recall symptoms inside my mouth like the ones I’m currently experiencing, but lip symptoms happened several times over next few years, each time more mild. Haven’t had anything like them in years. I always assumed it was OHSV1, though blood tests (though I didn’t have one for years after that initial incident) never showed anything.

I have a history of extremely elevated AntiNuclear Antibodies that have never been explained. Also Epstein Barr.

In August of this year I was extremely sick and took very high doses of antibiotics, which gave me candida problems (which I’m prone to), and probably wore down my immune system. Maybe even oral thrush.

I’d love to get your assessment. I’ve accepted I have GHSV1, but wondering if tests for HSV2 could be false positives.

Questions:

-If I am positive for HSV2 we know, based history of blood tests, it’s a relatively new infection. Does it make sense that my only visible genital symptom since acquisition, were confirmed by culture as HSV1?

-Do my mouth symptoms (current or past) sound like HSV of either type? Would HSV be appearing this severely despite being on so much Valtrex (started before mouth symptoms even appeared? It’s been 17 days of these symptoms, all while on Valtrex!

-Given the severity of the oral symptoms, and the fact that i was swabbed positively for GHSV1 while HSV1 antibodies came back negative, could this be a primary G+OHSV1 OB? (This is confusing given my past history of mouth symptoms).

-If not a primary OB, why would all of this be happening now — exactly simultaneous to HSV2 antibodies being detected for the first time ever in my blood? Could recently acquired (asymptomatic) HSV2 trigger an HSV1OB?

-If the bumps I got years ago were HSV1 (I do think they were), and I was a virgin at the time of acquisition, could I suddenly have a genital lesion from the same infection after more than 20 years? Unless I autoinnoculated back then, I don’t see how that could be possible.

-What is the likelihood that my vagial swab culture was mistyped and the the genital lesion was actually HSV2?

-Do people who are positive for both HSV1&2 get simultaneous OBs of both, or are they more prone to alternate? (Could my mouth symptoms be HSV2, simultaneous to a genital HSV1 lesion? It doesn’t exactly make sense because mouth symptoms are so much more severe, and I know HSV2 doesn’t like the mouth).

-Could my history of elevated AntiNuclear antibodies and/or possibly newly acquired HSV1 somehow be triggering a false positive for HSV2 antibodies?

-One of my IgG scores is below the 3.5, and one is above, though they were drawn two days apart. Is it worth western blot?

Thank you so very much for all of your help Teri!! I am so grateful to have discovered you as a resource.

[Terri Warren]

If you were my patient, I would run a western blot on you since one of your index values was in the low positive range and one was jut above it. And because you swab tested positive for HSV 1 in that situation.
I think it is unlikely your mouth symptoms are herpes because they are persistent and worsening in the face of treatment and they really don’t sound consistent with herpes either, to me
This could be a primary HSV 1 IF your HSV 2 is an error, yes. Acquiring HSV 1 after having HSV 1 is highly unusual and almost never happens. But the screening test for HSV 1 misses 27% of infections so the test could have missed it each time, also. The western blot is a far better test for HSV 1. I supposed acquiring HSV 2 could trigger an HSV 1 outbreak, yes
I’m confused – you said there was no oral sex 20 years ago so how would you get HSV 1 genitally?
I have seem mistyped samples, yes – not common but it does happen
It is common when a person has an outbreak of HSV 2 to also activate HSV 1 yes.
I doubt that your ANA has anything to do with any of this. We routinely see elevated ANA’s without any clinical symptoms in patients.

Did you post this directly into our forum or did you copy and paste this?

Terri

[confusionsadness]

Thanks so much for your reply, Terri (and apologies for mis-spelling your name in my last post!)

To answer your ?s: Recent positive swab for GHSV1 was the only confirmation I’ve ever had (either via blood or swab) that I have any kind of HSV1, either orally or genitally. I mentioned past mouth symptoms but these were never confirmed as HSV. I was a virgin when those first appeared. Perhaps, as you say, they are not HSV-related. That was 20+ years ago; I’ve had plenty of sexual encounters since.

I’m less interested in confirming my positive HSV1 status, than in invalidating my posiHSV2 bloodwork. Do you think the positive HSV1 swab genitally actually offers ANY hope that my HSV2 scores are erroneous? Or are these two independent factors, and the Western Blot would just be used to confirm my HSV1 (and possibly disprove HSV2 based on low-ish positive scores)?

Since IGG bloodwork as recent as this June found me HSV2negative, we can assume that IF I do have HSV2, it’s a fairly recent infection. Would you advise I wait a few weeks and repeat the IGG bloodwork, and then only pursue WB if my numbers haven’t increased? How long would I wait?

If I do get a WB, when is the earliest I can do this? How long would I need to be off Valtrex? I’ve been on it a few weeks already.

Based on my history, including recent IGG HSV2 scores (3.77 & 2.97) and also the evidence of my only observed genital OB (2 weeks ago) being cultured HSV1 in same timeframe, what do you think chances are that my HSV2IGG could be false positive?

Note that I’ve tested true negative for HSV1 and HSV2 via IGG a number of times in the past. Are the people who test as false positive for HSV2, individuals who test consistently false positive for the virus from the start? Or can something happen in their body to cause them to suddenly “become” false positive?

I do want to figure out the cause of mouth symptoms. What kind of Dr. should I go to for swabbing or other diagnostic help?

Thanks so much, Terri!!

[Terri Warren]

I understand that what you want most to do is eliminate a false positive for HSV 2. That would require a western blot.
With index values such as yours, the likelihood is abut 85-95% that the test is correct but I had a person with an index value of >5.0 NOT confirm with western blot so I never rule anything out.
The people who have a false positive ELISA seem to always have it when they test. In your case, you went from a negative to aTell me about your recent sexual history. When was the last time you had sex with anyone? How many partners have you had since June? Have any of them been tested?
If you have had these mouth symptoms since you were a virgin, they are not going to be herpes related, right? A dentist might be able to help you with those symptoms
Terri

[worriedworried]

Dear Terri,
6 weeks after I last wrote, my partner was (supposedly) tested for HSV1&2. He said HSV2 was positive. (Not sure which test, what his score was, or TBH if he even really took a test). I took his news as confirmation that my previous test results were in fact accurate (prior to that I’d questioned them, as they were low, and there were a few odd factors, described earlier in thread). Since then, I’ve proceeded with life as though I’m + for HSV1&2. I’ve been asymptomatic save a few questionable twinges, and one incidence of a single small lesion similar to the first lesion I found, back in Sep 15 (the one that swabbed positive for HSV1).

I’ve taken 500mg/day valtrex on-and-off since Sep 15 (probably on it 40% of the time).

2 wks ago Dr ran battery of tests for fatigue, which I didn’t know included Herpes. I got my results today and they shocked me:

BioReference Laboratories
Herpes I Ab(IgG), Result <0.2; (Reference <0.9)
Herpes II Ab(IgG), Result <0.2; (Reference <0.9)
Herpes SimpI/II (IgM) (3), Result 0.9 HI (Reference <0.9)
HSV1 IGM(IFA)(3) Result Detected
HSV2 IGM(IFA)(3) Result Not Detected

I am completely confused by the negative IgG test for HSV2!!

?s:
1)Is it possible that my HSV2 IgG tests from Sep ‘15 were False Positives? (they were 2.97 & 3.77).
If someone receives a false +, do their IGG levels tend to return to baseline (neg) at some point (e.g., after 9 months)?

2)What’s likelihood my recent HSV2 IgG was false neg? What might have caused such an error? Is it more likely that this was a false neg or that my initial tests were false +s? I’m more concerned about my HSV2 status than I am about my HSV1 status.

3)Why would my HSV1 IgM be pos but IgG test be negative? Given that I swab-tested pos for HSV1 9 months ago, are these discrepencies enough to warrant disregarding this entire run of tests?

4)Today Dr repeated HSV1&2 IgG tests. What else should I be doing?

5)Is there any connection between HSV and/or Valtrex and fatigue symptoms?

[Terri Warren]

1)Is it possible that my HSV2 IgG tests from Sep ‘15 were False Positives? (they were 2.97 & 3.77).
If someone receives a false +, do their IGG levels tend to return to baseline (neg) at some point (e.g., after 9 months)?

You could be experiencing what we call seroreversion – going from positie to negative. It doesn’t happen with western blot but it can happen with the IgG or it could be a false positive.

2)What’s likelihood my recent HSV2 IgG was false neg? What might have caused such an error? Is it more likely that this was a false neg or that my initial tests were false +s? I’m more concerned about my HSV2 status than I am about my HSV1 status.

The medicine taken every day could contribute to this seroreversion, if that’s what this is, yes.

3)Why would my HSV1 IgM be pos but IgG test be negative? Given that I swab-tested pos for HSV1 9 months ago, are these discrepencies enough to warrant disregarding this entire run of tests?

4)Today Dr repeated HSV1&2 IgG tests. What else should I be doing?

I think a western blot for sure.

5)Is there any connection between HSV and/or Valtrex and fatigue symptoms?

Some people do feel tired with both the medicine AND herpes so that is not a big surprise. If it is the medicine, that should resolve over time.

Terri

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