Please tease out the least unlikely of 3 improbabilities: False+PCR; recent auto-inoculation; recurrence after long latency. Recap: 2 ½ wk OB began 12/20; 12/29 +PCR HSV-1 w/neg. IGG/M as expected, given infection attributed to scratching genitals after ripping 1st-time cold sore late Nov. Serology still neg. 2/9; 3/26. Non-converter? If so, that throws a wrench into auto-inoculation theory since can no longer assume initial oral HSV exposure was recent (at age 51) albeit none prior recalled. Moreover, photos/description of Angular Cheilitis, aka Perleche (blisters in corner of lips) resemble the recent “cold sore”. Sexual History: 1979-1996:1st husband. If any cold sore (none recalled) he have likely transmitted HSV via frequent oral sex, and I had recurrent “yeast infections” (burning, itching, genital sores) in early years. But: such symptoms/frequency predated marriage, starting in teens. 1997-2004: 2nd; he had cold sore early on and should have transmitted HSV to me then. But: I recall no symptoms; indeed 25-year hiatus until recently. 2004-present: 3rd; his last known cold sore years ago. 2 days before my 12/20 OB we had (regular) sex, after which I had burning (as I often do). In Oct. I had similar burning/labial sores for some days, which I’d attributed to oral-manual-anal-genital cross-contamination. Did not see Dr. at that time; symptom onset too soon for HSV in any event – besides, that OB was shorter-lived than the 2nd. (Auto-inoculation, if it occurred, was late Nov.) Since Jan, a pair of small sores recur (in areas corresponding to two of Dec’s more pronounced lesions) usually day or so after sex. (I’d also had these sores during my 2 1/2 month abstention; they wax and wane every 2-3 weeks). PCR 2/26 on these sores was neg.
Welcome to the forum. Dr. Hook and I take questions interchangeably, not by request. However, our views are virtually identical; our writing styles vary from one another, but our basic opinions and advice on the forums have never been significantly different to similar questions.
You had an excellent response with antiejessi on the STD community forum. You correctly summarize the three potential explanations for your situation. Of them, I definitely support the false postive PCR theory.
This depends a bit on what lab did the PCR. There is no standard, FDA-approved PCR test for HSV, and the quality of the test probably varies widely. Most labs that do PCR have to buy reagents off the shelf, not intended for the specific purpose of diagnostic testing, and then create their own, home-grown assay; or they may purchase a home-grown but non-approved assay from another lab. A false positive PCR would be very unlikely in some labs, but it probably is quite common in others, especially in non-research labs without extensive experience with HSV,
The other reason I support this explanation is that so much of your story is atypical for herpes in so many ways, as you apparently realize. Auto-inoculation is rare, as you seem to understand, and it virtually never occurs in longstanding HSV-1 infections (or HSV-2), only during the initial infection. But a single cold sore is an unlikely presentation for initial oral herpes; if that was really herpes and you hadn't been infected previously, you would expect multiple painful sores inside the mouth, and probably a severe sore throat and fever. And your description that the oral lesion looked more like angular cheilitis also suggests it wasn't herpes. And the follow-up PCR on recent genital lesions also suggests a cause other than herpes -- although the test should be done within 1-2 days of onset to be maximally sensitive in detecting the virus.
I don't fully understand the clinical picture at the time the positive PCR specimen was obtained. If that was pretty classical for initial genital herpes, I could be persuaded that the PCR was accurate and that, for unexplained reasons, you are among the 10-20% of HSV-1-infected persons who never develop measurable antibodies to the virus. However, yet another argument against herpes is that genital HSV-1 outbreaks rarely occur as frequently as you apparently have had.
What to do now? Probably another couple of attempts to detect HSV by PCR and culture, if and when genital lesions reappear, would be reasonable. Also yet another HSV-1 antibody test after 6 months, and perhaps even at a year. You could also request a Western blot test. If all those remain negative, I would conclude the initial PCR indeed was in error.
Finally, to give you the maximum benefit of your MedHelp dollar: I'm going to ask both Dr. Hook and Terri Warren, who moderates the Herpes Forum, to glance at this thread and see if they have any different thoughts. If you see no comments from them, it will mean they agree with my analysis.
Because of message overflow, I had been obliged to omit this final portion relevant to my original clinical diagnosis:
Re 12/29 +PCR: even had my lesion tested neg, Dr. had NO alternative diagnosis -DOES THIS CHANGE YOUR ANALYSIS?- despite my insistence that I had no obvious risk-factors resulting in having suddenly acquired Herpes, which I’d thought due to HSV-2. (After learning HSV-1 +PCR, w/blood neg., I had my auto-inoculation theory wrapped up; I simply sat back to await seroconversion. Here I still sit, stymied. So, Dr. Detective: What do you deduce from this strange saga? HSV – or not HSV? –That is the question. If HSV; was the insult self-inflicted, or was the husband –which one, for extra credit– responsible?)
MANY THANKS FOR YOUR PROMPT AND THOROUGH RESPONSE. And no offense intended on my directing "To Dr. Hook"; it was simply that it chanced to be his postings I'd encountered. And much obliged for the Big Bang for the Buck: I already lost my first fee yesterday when the computer booted me off before submission.
If your doctor thought the appearance of any genital lesions and an overall clinical picture favored herpes, that's important -- especially if s/he is reasonably experienced with the disease. Also, Dr. Hook and NP Warren are skeptical of my prediction that the PCR was false positive and lean more toward a false negative antibody tests. Still, the 2 other problems remain: the source of infection, since apparently your husband's HSV-1 is oral but no oral sex leading up to the first symptoms (and I continue to be skeptical about antoinoculation); and the usual rarity of recurrent outbreaks with genital HSV-1.
Ned, Terri and I are in agreement that you should have a Western blot if the cost isn't prohibitive (and with possible uncertainty of insurance coverage since it's not an FDA approved test): around $120 plus possible charges for blood draw and for handling by a local lab to ship the specimen to Seattle. If you do this, I suggest you wait until late June, i.e. 6 months after the positive PCR test. It often takes WB that long to become positive. In the meantime, you also could pursue additional PCR tests if you have new outbreaks.
Please let us know if or when you get a positive result on any of these additional tests. There is no time limit; it's OK to post a comment even if not until July.
NP Warren; Drs. Handsfield and Hook: Thanks so much to all for taking my fishy tale seriously; apologies for its plethora of red herrings!
OB/GYN who diagnosed HSV was not my regular; nor was the one I saw for the 2nd PCR on minor pair of recurrent sores, 3/26, day after their appearance (he did not think them due to OB). Autoinoculation was MY (only) explanation - cold sore (?) was TINY, but I DID rip it open and scratch below quite a bit right afterwards. I'll try to find out specifics re credentials of lab; report mentioned Rapid PCR developed by Mayo Clinic, which at least sounds impressive.
I'll keep you posted of any further + or - developments.
I agree a test developed by the Mayo clinic is likely to be reliable. Further, I have spoken with my colleague Dr. Lawrence Corey, widely considered the world's top genital herpes expert. He agrees with Ned and Terri, and not with my initial impression, i.e. that a false positive PCR is unlikely. But it isn't impossible. We all look forward to hearing your WB results, if and when you have one.
Certainly, if the WB is positive, that settles the IF, though the HOW would remain to tantalize. But if by chance it were negative at 6 months, would that likely mean I was simply a non-converter (which is the working assumption to-date anyway) OR would it indicate the original PCR had been wrong? Bottom line: I would invest in the WB if I'd get a more definitive answer over simply retaking the regular test covered by insurance. (Perhaps I should repeat that first in any case; if positive, no need for the WB.) Regardless, you wonderful people have surely given me top-shelf service at bargain basement prices: the cost of the WB pales in comparison to what your help is worth.
I can't make the decision about WB for you, but it sounds like you're leaning that way. If that also turns up negative at 6 months, you could do it yet again after a year. In the meantime, or if the WB is negative and remains that way, I suggest you not dwell on the "how" or "why". Some people just don't develop measurable antibody. There is no known reason; it appears to be random and it isn't know to reflect any underlying health problem. You may as well wonder about why any random event happens.
I think this should end this thread, unless you want to return after your WB result is available. Thanks for the thanks; I'm glad the forum has been helpful to you.
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