[Question #9156] HSV-2 Symptoms one year after positive test

35 months ago

Hello, I've spoken with Terri Warren on her site about my issue and I appreciate her feedback, but I'm hoping I can have the opinion of Dr. Handsfield or Dr. Hook on my question. I learned last October after having intercourse with a woman without a condom that I'm HSV-2 positive. My IGg was around 19 at the time. Is there any possible way that my IGG could be that high from a brand new Infection, having been tested 4 days after the occurance? I've been told no, but I wanted to double-check.

5 years previously I has similar symptoms; pain at the tip of my penis, pinching groin pain, testicle pain, radiating pain in inner thighs. My doctor at the time gave me a shot of Rocefin, and while it still took about 5 weeks for the pain to go away. It ultimately did, and I didn't experience anything like that again until last October. I've never had any visible symptoms. I've been checked multiple times and my doctor was convinced I had hernia or something else. He even had me get an ultrasound to check for it.

They tried giving me several different antibiotics including a cycle of doxycyclene and ciproflaxacin. It seemed like they helped out a bit, but the symptoms returned. I've tried Valacyclovir for a 7 day cycle and also for an extended period of about a month. It didn't really work. I switched to Acyclovir and it seemed to work better and my pain symptoms haven't been as bad, so I've been on that since June (about 2 months).

Anyhow, It's been almost a year now and while my symptoms have been better, they are still pretty intense on a weekly basis. They seem to be much worse after a weekend when I've had multiple alcoholic beverages, and also caffeine seems to make it worse. I generally don't drink, or drink much less during the week.

Anyhow, my question is, do these symptoms of itching(sometimes it's my whole body, head to toe), burning inner thighs, pinching groin pain, sound like HSV-2 reocurrances, or somehting else. I also saw a urologist who said it was interstitial cy

35 months ago

I was cutoff in my previous question, and it froze. Anyhow, I saw a urologist and he said it could be interstitial cystitis, but that medication didn't work either. Is this likely to be something caused by an HSV that is resistant to the Anti-virals? Could the symptoms be something other than HSV-2? I've been tested for everything and they were all negative. And last, are there any other treatments I can try that may alleviate the symptoms? They've given me DuLuxotin and Gabapentin, but I don't want to take anti-depressants. I'm seeing an Infectious disease specialist next week, so if I have any recommendations for him, that would be great.

H. Hunter Handsfield, MD

35 months ago

Welcome to the forum. Thank you for your confidence in our services. Terri herself routinely manages all herpes related questions, and you may have seen her name as moderator for this question. But for the reason you suggested yourself, she asked me to respond, which I am happy to do. (By the way, your initial try "froze" because on an intentional character limit. But the subsequent exxtension is brief, so no big deal.)

It would be helpful to know what Terri's responses were on her own forum. Mine is that you may not have HSV2 at all; and if you do, I am even more confident herpes is not the cause of any of the symptoms you report. And if you have HSV2, you did not acquire it during the sexual exposure last October. Four days is much too soon for a positive blood test from a recently acquired infection; 3 weeks is the minimum, and it often takes 3 or even 4 months. If you know or can you learn exactly what HSV2 IgG blood test was done -- trade name, if included with the results; exact index value (are you sure yours was 19 and not 1.9?); and the cut-off value for a positive result, I will be better able to tell whether or not you have HSV2.

But as I said, even if the test is clearly positive, there are many reasons to be confident herpes doesn't explain your symptoms. First, although some of what you report can be found on lists of HSV symptoms, by themselves herpes is rarely if ever the cause. Second, absence of visible blisters/sores argues against it. Third, if HSV were the cause, acyclovir treatment would have promptly (a few days) resolved them -- not merely modest improvement over 2 months. Fourth, as for their recurrent nature, herpes almost by definition causes symptoms only intermittently, but outbreaks virtually never are more common than once every 3-4 weeks, and there are no symptoms at all between outbreaks.

I won't comment on other possible causes, except to say your symptoms are not compatible with any other STI either. And if somehow they explained some aspects (e.g. penile or urinary discomfort), the treatments you had (e.g. ceftriaxone [Rocephin] and doxycycline) would have promptly resolved them. Much of what you describe sounds most compatible with a psychological origin. I'm not a big believer in mental or emotional status creating symptoms out of the blue. However, stress, anxiety, depression, etc absolutely can magnify minor symptoms or even normal body sensations that otherwise would not be bothersome and perhaps not even noticed. And the treatments your doctors have tried or might be considering suggest they are thinking along these lines for at least some of your symptoms.

That's all for now. I look forward to learning more about what Terri advised (even if different than my thoughts -- we're not always completely in sync on some of these issues!) and the details about your HSV IgG test results. Until then, I hope these comments are helpful.

HHH, MD

---
---

35 months ago

Thanks, Doctor Hansfield,

I have been tested twice now through Labcorp, with HSV 2 IgG, Type spec. In October my IgG level was 18.6 and in April it was 13.0. Anything over a 1.09 is positive on that test. I tried to attached screenshots, but it doesn't seem to be working.

Terri said she thought that with such high numbers, she's very sure that I am positive for HSV-2, but these symptoms could be due to something else. She also said "Groin and thigh pins and needles feeling, pelvic pain, swollen groin, testicle pain and pain in the tip of my penis are not really signs of HSV 2. Neither are light nausea, loss of appetite, frequent urination, and exasperated symptoms after sitting. Some people who have HSV 2 can have the pins and needles feeling but it should not be constant." She also said "The fact that the antiviral medication didn’t change these symptoms further suggests that your symptoms are not related to HSV 2." (Some of these symptoms were from the first couple of months last year, October, November)

I also just found, that the Urologist I visited prescribed Oxybutinen, which didn't help. I had also spoken with a neurologist online and he said the symptoms could be HSV-2 related nerve symptoms and that Gabapentin may help if I take it for a couple of weeks. I would take the nerve medication, but the symptoms are intermittent on a weekly basis. I mean, there's always some very light symptoms, but it intensifies after the weekend, and then by Wednesday or Thursday I start to feel almost normal again. I guess I'm wanting to treat the cause of the symptoms, not just mask the symptoms themselves, if possible.

I've read a lot of scientific articles and found this one that mentioned "Radiculopathy caused by HSV-2 infection typically affects the lumbar or sacral nerve roots and is often recurrent. In addition to radicular pain, paresthesias, urinary retention, constipation, anogenital discomfort, and leg weakness may be observed."

https://jamanetwork.com/journals/jamaneurology/fullarticle/795486#:~:text=Radiculopathy%20caused%20by%20HSV%2D2,leg%20weakness%20may%20be%20observed.

Anyhow, that's where I'm at at the moment and I'm not really sure what else I can do. I'm hoping the Infectious Disease specialist may be able to help.

Let me know if you have any additional insight, or if I can provide any other details that may help.

Thanks!

H. Hunter Handsfield, MD

35 months ago

Thanks for the clarifications. I agree you have HSV2 -- although I'm pretty sure Terri would agree with me that LabCorp's antibody test has been less well studied than others and little is known about how its numerical values correlate with proved infection. In any case, she and I agree (so far) that HSV is not a likely cause of most of your symptoms -- probably not any of them, in my opinion. As for HSV causing radiulopathy (as suggested in the JAMA Network article you cite, and the problem your neurologist suggests treating with gabapentin), the evidence is weak. Immediately after the statement you quote, it goes on to state "there are few descriptions [in the medical literature] of HSV2 radiculitis..." and "The disorder is typically self-limited, resolving after days or weeks...and recovery appears to be hastened by the use of antiviral medications" [such as acyclovir]. Even if HSV2 really causes such problems, these descriptions seem not to fit the symptoms you describe, their time course, or their limited if any response to acyclovir and especially valacyclovir.

So I remain confident you have no symptoms that can be reliably attributed to HSV2. Do we know for sure? No. We're dealing with a complex virus, complex immune responses, and complex neurological symptoms. I cannot be 100% confident that HSV2 can never do this. But I honestly doubt it explains your situation.

As for your upcoming infectious diseases consultation, here too I would urge caution. Speaking from 45 years of academic and clinical experience as an ID specialist myself, as well as STI specialist (with reasonably good credentials in HSV itself), the understanding of these issues among my ID colleagues is highly variable. I hope yours is highly experienced in herpes and its complexities. Unfortunately, I have to warn you to not expect any more conclusive evaluation or diagnosis than you have already had from your own doctor(s) so far, from Terri, and now from me.

Terri and I are in touch about your situation by email; I'm waiting for her latest reply (she has had a busy day). Soon she or I (or both of us) may have some final comments and suggestions for you.

---
---
---

35 months ago

Ok, thanks!

Yea, I’ve been taking a ton of Tylenol in the last year paired with a half of a Tramadol pill on the days when it’s really bad, but I would like to stop doing that. I never in the past had to take pain relievers at this high-level of frequency. I’ve done a fair amount of meditation as well as I know sometimes these thing can be somewhat mental, but it certainly feels real, and since HSV-2 does live in the sacral ganglia, and the pain is in the same general area, it seems plausible to me it could be causing the symptoms. Tonight my symptoms have calmed down again, from about a 4-5 pain level yesterday now to a 1. I seem to notice a pretty big difference when I take 10mg of liquid Black Elderberry 2x/day which has been reported to have antiviral effects on HSV, alongside the continued Acyclovir 2x / day. I can’t say if it’s placebo effect of course, but it does seem like the symptoms clear up in about a day or two when I take the supplement as opposed to 3 or 4 without.

The worst I think is just wondering if the symptoms are constant viral shedding events or if it’s truly something else.

Thanks again!

H. Hunter Handsfield, MD

35 months ago

Terri and I have discussed your situation by email. We agree your positive HSV2 IgG antibody test is conclusive: you have HSV2. We also agree herpes is not a likely cause of your symptoms.

Your reasoning about HSV2 residing in sacral ganglia and therefore that pain in that location is herpes related doesn't have any known scientific rationale. (Symptoms in the distribution of that particular nerve root -- e.g. a single foot or lower leg, or anywhere else in the leg on one side-- could have that implication, but not discomfort in the area of the nerve ganglion itself.) Neither does the supposed antiviral effect of herbal or natural products like black elderberry, and I also am doubtful that your symptoms are correlated with HSV2 shedding. As noted above, I cannot say for sure these or other symptoms are not herpetic, but realistically you should not expect significant improvement as a result of any treatments directed against herpes. For your sake, I hope I am wrong.

My final advice is that you watch for subtle outbreaks of recurrent herpes. Half or more of infected people who are unaware of outbreaks come to recognize them over time, so be alert to otherwise unexplained sores or local irritation (with visible skin abnormality, not just itching for example) anywhere in the "boxer shorts" distribution of your body (from your waist to upper thighs). Most recurrences on on the genitals or quite nearby, but the buttocks, anal area, upper thighs, lower abdomen, etc all are possible. If anything shows up, get seen ASAP (within a day or two if possible) by an understanding provider who can test lesions for HSV by PCR; or perhaps arrange have test kits on hand for self-collection of specimens if anything shows up. Your ID consultant may be able to facilitate this.

Best wishes and good luck to you. I hope the discussion has been helpful.

---
---
---

Terri Warren, RN, Nurse Practitioner

35 months ago

I would also say that if you want to know if you are shedding virus from the genital area when you are having concerning symptoms, you could do self-swabbing to confirm or deny that these symptoms are related to HSV 2. There is a place called 24/7Lab that has herpes PCR swab kits that they can send you, you can gather the sample and return it to them for processing. The cost is about $79. Here is the link to their website: https://www.247labkit.com/. When people have swabs available to collect themselves, it can allow you to address symptoms in a very timely way, rather than having to wait for an appointment to be seen. But the tests are the same. In fact, using a service like this that is certain to use PCR vs. culture may give you greater accuracy. Some clinicians are still using culture - PCR captures 3-4X more positive cases than culture.

I think sometimes people who get diagnosed with HSV 2 feel like everything that is happening in lower part of their body IS herpes but its useful to remember that other things could be going on at the same time as an HSV 2 infection. Since you say that the symptoms seem to get worse over a weekend, and better later the following week, you might give some thought to what's going on over the weekend.

Terri

---

35 months ago

Thanks Terri!

I’ll look into that. One question. So you just swab the area even if there are no visible sores or lesions?

Over the weekend I usually have 6 or so drinks each day when I’m out with friends. That’s that only difference.

Thanks again!

Terri Warren, RN, Nurse Practitioner

35 months ago

Yes, when we do studies using daily home swabbing looking for viral shedding, we have people aggressively (but not painfully) swab the genitals -for men that swabbing includes total shaft of the penis, top of scrotum and anus. These studies have shown that patients sometimes recover as much virus from skin that has no lesions as they do from lesions themselves. For you personally, the goal would be to see if these sensations are linked to days when your virus is active. If you do, say five of these, and no virus is recovered, then you can know that on those days, you were not actively shedding virus, at least during the period of time that you did the swabbing.

In terms of the weekend making things worse. You might try a weekend without alcohol and see if indeed the two things are linked - bothersome symptoms and alcohol use. It would be kind of a bummer if you found that they were definitely linked, but at least you would know that it isn't about HSV, right?

I'm closing this thread now.

Terri
---