[Question #8001] Appear to have genital hsv1 to genital hsv1

50 months ago

I'm a 49yo male who had been seeing a woman recently with genital HSV1. She has had it for over 30 years from her ex-husband. She says they only ever had genital symptoms and he had tested positive for only HSV1 during their divorce proceedings. I began having burning urination just this past Xmas. Went to a walk-in clinic, urine tested negative for UTI but because of her herpes, sent my urine off to be tested for all the STDs. Everything negative except for herpes, but that test did not differentiate between types. Burning urination lasted two weeks, during which time I saw only one TEENSY sore on the underside of penis just distal from the head, which went away after a day. Saw my PCP on Jan 6 who ordered full STD blood panel. Tests for all came back negative, but I attributed that to being too soon for IgGs to show for herpes. Began feeling tingling in R hip and inside R thigh, and three more VERY small sores appeared on shaft of penis around Jan 23, took Valtrex, sores gone in two days but tingling in hip/leg remained until early Feb. On Jan 29 had IgG blood tests done through STDCheck. Pos for 1 (2.35), neg for 2. I have never had another outbreak since (possible that was just one long initial outbreak? and what sounds like an EXTREMELY mild one at that from what I read and hear), and decided to get a followup IgG bltest through the same company on June 14. This time the test came back negative for 1! I have read that antibodies can disappear over time, but THIS soon?? I had a traumatic emergency-room-type accident in early Feb (when the tingling went away and never came back), lots of stress from the breakup of the woman in question plus also issues with my son, a possible Hep C scare that turned out to be a false neg/cross reactive test, and then had covid-19 in May. Shouldn't all these things have triggered an outbreak?? lol So that's why I went for the new test recently. Do I have HSV1? Is it possible my body could actually have fought it off?? Help?! lol...

Terri Warren, RN, Nurse Practitioner

49 months ago

I am not familiar with the accuracy of a urine test for herpes. The IgG test misses 30% of HSV 1 infections compared to the gold standard herpes western blot. If you were my patient, I would suggest that you do that better test. It is available only through the University of Washington but you can work with your own provider to get that test or through me at westoverheights.com. You can call them at 206-685-6066 to get the kit necessary for the test. If it hadn't been for the positive urine test, I wouldn't suggest this necessarily but it seems to me with that result in place, you really should find out.

Terri

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49 months ago

Thank you, Terri. It's a pleasure to communicate with you, as I've seen your name mentioned and recommended quite a lot in my herpes research these past six months.

I'm definitely going to look into whether my PCP will do this test for me, but if for some reason not, I'll certainly go through your site for it. It does appear I have an AnyLabTestNow location in my city, so that works out well if I go through your services.

If I can ask a followup opinion in the meantime... I know a lot is up in the air until I do a western blot. With the two HSV1 IgG blood tests I had, one pos in January, one neg in June, I understand there is every possibility that one of them could be false (I read on your website about 50% of people with tests resulting in 1.1 to 3.5 - like mine of 2.35 in the first test - may not actually have herpes). So let me ask you this, based on what you've seen. Is it possible that I had a physical reaction to my ex-girlfriend's virus, but never actually acquired the virus itself, or like I opined, my body fought it off? I didn't think that was possible, it always seemed to me once you "had it", that's it, game over. I know it's just conjecture at this point, but would you mind indulging me on your thoughts on that?

For example, the only reason I even ask this is during my STD panels ordered by my PCP on Jan 6, I actually had a pos result for Hep C - which confused the hell out of me, let me tell you. I am not someone that would ever be at risk or in danger of acquiring that; I donate blood on a regular basis and had the Red Cross confirm my two previous donations - including my most recent one just a month before - were negatives. My PCP also believed this HCV IgG result was a false pos result, ordered a more extensive panel ASAP just to be sure, and while the IgG came up positive again, the HCV RNA test for the actual virus itself was negative. His response to that was this: "This means that you have likely been exposed to Hepatitis C in the past, but have never had a true infection." I wasn't sure I bought that, seemed unlikely with my recent blood donation history, lifestyle, etc., but nonetheless it has me thinking about my herpes situation... Could this actually be a possibility with HSV1?? Exposed to it but never had an infection?

(BTW, in my own research about that Hep C scare, I learned that some Hep C IgG tests are cross reactive with certain flu strains/vaccines. I had just been given the flu shot about 24 hrs prior to the STD panel blood draw I'm mentioning here. So I feel that it was the flu vaccine that caused the two false pos HCV IgG tests. I've donated blood twice since then and have not been flagged by the Red Cross at all about it.)

Thank you again so much for your time!

Terri Warren, RN, Nurse Practitioner

49 months ago

No, if the western blot is negative and IgG is positive, it just means that some other protein in your body is artificially tripping the IgG test. While the IgG test looks for a single protein that is different between HSV 1 and 2, the western blot looks for all 16 proteins and doesn't call it positive until at least four of those are present. So you can see that the opportunity for an error is much more likely with the IgG test and impossible with the western blot.

The term "exposed" is very confusing. Some clinicians use this as an explanation for a positive antibody test but that is not correct. It's like a pregnancy test - it's not positive because a woman was exposed to sperm - well, she was, but it's way more than that. Does that help?

Terri

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49 months ago

Terri,

Thanks again for your time. Definitely looks like the western blot is the better way to go. I contacted my PCP about doing a western blot through him. Since the most recent IgG tests I described to you were done by me independently through Quest rather than through him, he said (rightly enough) "I would prefer not to follow up on tests that I did not order", so looks like I'll more than likely be speaking to you in the near future about the western blot.

I'm certain you hear the words "confusing" and "frustrating" CONSTANTLY when it comes to herpes, and I've read it in your documents. The biggest reason I did do further tests independently from him is because after my initial negative IgG test through him (just 2 weeks after the painful urination symptom began on Xmas day), but being aware IgGs may not have developed in significant numbers yet, I asked if I could be retested in a few weeks to see if there was a change. His response: "I do not believe you need this unless new issues pop up. We can repeat it at your next annual visit. But the antibody test would not change my advice at this time." I know he doesn't specialize in infectious diseases but I definitely was frustrated that I wasn't getting the care I think I should have. As you say in your handbook, "Don't settle for something less than great." True, I did not, and still have not, had another symptom, prodromal or otherwise, but that positive urine swab on 12/30 had me concerned. I also wanted to verify I was dealing with genital HSV1 since that's what my ex-girlfriend told me right off the bat she had herself, but the urine swab wasn't giving me any info about specific type. I felt my independent follow-up actions were more justified when my first Quest IgG resulted HSV1 positive like I expected it to. Now with your opinion that a 2.35 is fairly low and possibly even false positive, followed by this second Quest test resulting negative...sheesh! CONFUSING. And as you said, some clinicians use terms that most people would just take as gospel truth and be done with it. I know how much folks in health fields "love" when patients consult Dr. Google first, but I do feel we should all take a more active role in our own health concerns and results. I am learning a LOT here and am very grateful for you and the others who run this forum that we can at least ask your opinions. Thank you for your time and your patience!

I believe this is my last allowed reply on this forum, so one more quick question/opinion? If you have any opinion on this, I'd like to share the results of that urine swab just to give you more info about it and reinforce the need for a western blot? It was a Genito/ STD Infectious Disease Pathogens test, resulted "Detected" for Herpes Simplex Virus 1 & 2, Estimated Copies/mL was 7.3 x 10 to the 6th power, Est. Microbial Load was High. I'm sure it WAS high at the time; it hurt to start and stop peeing for crying out loud. This urine swab was tested for approx 40 different "microbe-related and resistance genes"; again, herpes 1&2 was the only one flagged.

Oh! And out of curiosity, has it ever been studied as to if people with/without other human herpes viruses have similar/different issues/symptoms when it comes to affecting the two STI versions? For example, someone who has HSV1/2 but is CMV negative may have different issues to someone who was CMV pos? Or had chicken pox or mono vs. not? Just wondering.

Thanks so much! Sorry, I like to write a lot. lol

Terri Warren, RN, Nurse Practitioner

49 months ago

Can you tell me what lab did this urine test? I would like to read more about it in case someone else presents with a similar situation. And are you in the US?

I'm not saying its not valid - I just don't know how seriously to take this test but would like to know more.

I think you were completely justified in ordering your own tests, his ego might be a bit bruised here - just ignore and carry on with the blot.

I don't believe the question of other herpes viruses impacting or not impacting HSV has been studied specifically.

We'll leave this open until you have an opportunity to answer the first question that I asked.

Terri

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49 months ago

Yes, I'm in the US. My ex-girlfriend and I were actually on vacation in Florida for this part of the diagnosis, celebrating my bday which is shortly after Xmas. "What did your girlfriend give you for Xmas/your bday?" Ummmmmm....you don't wanna know. Actually, to be fair, we did use condoms but not always, and I have as much responsibility here as anyone. Although she felt she was "safe" from transmitting because she was on Valtrex on a daily basis. Clearly not "safe". Frustratingly, on 12/26 when I told her I was feeling something different when I urinated, she told me, "Maybe it's just a UTI, I think I've been fighting one off this past week myself." I was a little floored and disappointed that I had to find out NOW that she hadn't informed me she wasn't feeling 100% during the week I believe I contracted it off of her. She'd had herpes for 35 years and I thought she knew the signs, but apparently this time it wasn't the same prodromal symptoms she's familiar with. Which is curious for me, Terri. She has herpes for most of her life, had a HORRIBLE initial breakout followed by many more recurrents over the first few years, and still says she gets probably 2 per year, even having gone on daily Valtrex when she decided to start dating again beginning 2 years ago. And this is for genital HSV1! You and other experts say it seems rare for genital 1 to cause genital 1, plus also genital HSV1 doesn't normally seem to cause that many recurrences. Clearly everyone is different... And I'm suspicious if she's getting her Valtrex from a legitimate source. When I got the positive lab test back she said "If you need Valtrex, I can get you some". Hmmm. Is it possibly even legit Valtrex she's taking?

The UTI test (negative) was done in-house at a MedOne Urgent Care clinic, but the urine was sent off for the further tests to a third party. My documentation says AIT Laboratories, "a healthTRACKRx company" based in Texas. Specimen was collected by FL clinic on 12/30, received by lab on 12/31, reported on 1/2. Which was when I got the call from the FL clinic, immediately checked myself and noticed the teensiest little sore on the underside of the penis, proximal to the head. I would NEVER have seen that otherwise if I hadn't gone to look for it, frankly, and it went away soon after, while the urination pain continued for a few more days. Only ever got three more tiny sores, and that was a week later, not long after the urine pain stopped. My PCP had approved the "abortive" method of Valtrex in my appt with him on 1/6 (six 500mg pills, 2 a day for 3 days), took them when those new sores showed up around early/mid-January (the 12th I believe, because that's when I submitted a new request for a refill on Valtrex), sores gone in a day. And that's all she wrote on symptoms for me, ever, besides the hip tingling I believe I was feeling until specifically Feb 2.

Thanks, Terri!

49 months ago

On the Valtrex issue, if it at all matters, my pills I get through Rx are white with a code number on them. She always referred to hers as "little blue pills" and I don't recall if they had a code number on them at all. My gut says no? Not sure if it matters when it comes to legitimacy, just thought I'd share. I took some of hers for my initial symptoms after the call from the Florida lab verifying herpes virus from 1/2 to 1/6 but my PCP on 1/6 said something like, you can stop taking them now, they're not going to do anything at this point. Which he wasn't wrong...

49 months ago

And if I can squeeze one more question in under the buzzer...

A current "interested party" lol wanted me to ask this question. What is your opinion on the likelihood of a partner contracting HSV1 through performing unprotected oral sex on me? Since HSV1 seems to prefer the mouth, that is the concern here.

FYI, to date I have always had a condom on, no question, no matter what we've done.

Thanks!

Terri Warren, RN, Nurse Practitioner

49 months ago

The risk of someone (uninfected) performing oral sex on your NOW is a little higher than it will be in 6 months and it will lower still in 2 years. But it is still low. Did the woman from whom you think you got infected in the first place give you unprotected oral sex and well as having intercourse? And I am assuming the intercourse was unprotected?

I don't think you should be worried about the legitimacy of the herpes medications.

Terri

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49 months ago

Terri,

Happy 4th! And btw I hope you've been able to stay cool in your part of the country with such excessive heat these last weeks!

To answer your questions:

Yes, the woman who I believe I got infected from, who I was in a sexual relationship with for 5 months (infected just before the 3 month mark, did perform unprotected oral sex on me, and I on her during our relationship, and yes, we most often engaged in unprotected vaginal intercourse but sometimes condoms were used when she thought it would be best to. A reminder, however, that she told me that for all the decades she and her (ex-)husband have had HSV1, it only ever manifested genitally in either of them. She was adamant they never experienced oral symptoms. Nor have I at this point.

You, other experts, and just about every resource available seem confident in saying that when one herpes type manifests, it just about 99.999999% of the time will only manifest in one spot, either only genitally or only orally. The current woman I am with has, after doing lots of good research and contemplation, considered it safe for me to perform unprotected oral sex on her, since mine appears to be genital HSV1, and a "weak" one at that. When she has performed oral on me I have always had a condom on, and when we engage in vaginal intercourse, not only do I have a condom on but also have my boxer briefs on with the penis pulled through the fly. We do that because the concerns are the OTHER areas of my genitals such as the scrotum coming into contact with her. She also has worried about touching my penis or testicles (either one of us touching me there) with hands and then touching her vagina without washing hands first, etc. Again, I haven't had any outbreaks since January when that would be more worrisome, but no one can ever obviously say I'm 100% without chance of spreading...

Because she's definitely taking a risk she certainly doesn't have to by being with me sexually in the first place, of which I feel simply amazed and humbled by, in addition to my serious desire to keep her as safe as possibly from infection, is there anything you can give further guidance on regarding what activities are, as she's wondering, definitely safe versus not?

I also have ordered the western blot kit and will be talking with you on a video call on Tuesday morning! Thanks, as always, for the info and advice.

Terri Warren, RN, Nurse Practitioner

49 months ago

I am still not absolutely convinced that you have HSV 1genital infection. I know you are, however. And I respect that that is possible here, though I will say you should buy a lottery ticket, this kind of transmission is so rare. Also, just because her symptoms only manifest genitally, it doesn't mean with 100% certainty that she doesn't have an oral infection.

Antibodies RARELY disappear, but that is called seroreversion when it happens. It never happens with the western blot.

I can't think of anything more that you can do to protect your partner, no. I assume that she's had an IgG test and is negative for HSV 1?

Terri

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