Aa
confusing symptoms/diagnosis
dx with GH 03/23/13 visually. culture test negative for both types. blood test positive IgG for type 1, >5.0, negative type 2. but i have had oral herpes since childhood. 2 more blood tests since, both negative type 2, readings for type 2 were .05, .05, .04 for the latest, which was 6 months after dx. i took famciclovir for initial symptoms and Valcyclovir 1G daily until 2 weeks ago I stopped taking meds. i have not had "normal" symptoms since first time was "sort of" blister-like but never fully blistered/burst, etc. had a 2nd ob about 4 days after first ended; red, itchy, a little swolen over most of penis shaft. since right before that 2nd outbreak and since now for almost 8 months, i've had a burning/itchy sensation in my inner/upper thighs, sometimes mild sometimes pretty annoying, aggravating, affects my mood a lot and i'm sick of it. I'm wondering if i actually have GH given the unusual symptoms (feels like what I've read feels like prodrome for some people but never goes away and never manifests visually), and the negative culture and blood for type 2, 6 months after visual diagnosis (and if it is type 1GH, then why isn't my body handling it better given i've had type 1 oral my whole life)? I've seen Infectious disease and neurologist specialists and they couldn't help. am very frustrated with the sensation itself and want to do whatever i can to figure out how to alleviate them as well as "move on". no change since i went off meds 2 weeks ago. i'm 42yo. had protected sex with a prostitute 2 weeks before initial symptoms, unprotected sex with a friend 5 months before that and was in year long unprotected relationship ended 10 months before dx. mentally, i'm really ok with dealing with GH, i can handle it, but i've started seeing someone and generally tired of putting my sex-life on hold. she is aware of the situation and i have told her we shouldn't have sex while i have these constant prodromal feelings.
MEDICAL PROFESSIONAL
Well, that all sounds extremely frustrating. I hate it when clinicians diagnose people with a life long disease with no positive lab test!! So frustrating for everyone but mostly you, of course. Can you tell me more about the symptoms that you were experiencing when you were diagnosed?
My guess is, given the timing, that if you have herpes, it was from the prostitute, not the other people or your lab test would be positive by now. While it is true that the antiviral medicine could easily be impacting your lab test results, if you had been infected at the time of your first outbreak, you would likely be positive anyway, because you would have become positive way before the prostitute contact.
Unfortunately, you are going to have to stay of these meds for a few months before we can know more clearly if you are infected or not. I recently had a patient who was infected two years before we saw her. She had a classic primary infection, her partner tested positive, and yet her antibody test was not positive. She had been on suppression the whole time. We pulled her off and at three months later, she was positive by western blot.
I would strongly suggest that if you have any symptoms at all, visually, that you think might be an outbreak during the next few months, that you get in to have a swab test done immediately. And don't get a culture, get a PCR which is far more sensitive.
Is this helpful for you?
Terri
My guess is, given the timing, that if you have herpes, it was from the prostitute, not the other people or your lab test would be positive by now. While it is true that the antiviral medicine could easily be impacting your lab test results, if you had been infected at the time of your first outbreak, you would likely be positive anyway, because you would have become positive way before the prostitute contact.
Unfortunately, you are going to have to stay of these meds for a few months before we can know more clearly if you are infected or not. I recently had a patient who was infected two years before we saw her. She had a classic primary infection, her partner tested positive, and yet her antibody test was not positive. She had been on suppression the whole time. We pulled her off and at three months later, she was positive by western blot.
I would strongly suggest that if you have any symptoms at all, visually, that you think might be an outbreak during the next few months, that you get in to have a swab test done immediately. And don't get a culture, get a PCR which is far more sensitive.
Is this helpful for you?
Terri
A related discussion, Treatment for Herpes was started.
A related discussion, test results was started.
MEDICAL PROFESSIONAL
OK
Terri
Terri
ok, thanks, will do!
MEDICAL PROFESSIONAL
You can certainly test soon. Let me know the results, OK?
Terri
Terri
Thanks for your input Terri. I somehow missed your response, thus the late reply. I don't think they would bother me as much I guess if I thought they were from something else. The mental part of having to put my sex life on hold now for 8+ months is emotionally draining, so feeling these sensations every day just puts it in my mind more than it would if it was something not sexually transmittable. However, even if they weren't, they are bothersome enough that I would definitely want to figure out how/if to do away with them. At times it's pretty bad.
I have been off the meds now for about 7 weeks I think. No change, no outbreaks, same sensations in my thighs/groin area. Sometimes better sometimes worse. A couple of times (both during and after taking the meds), I've had what i thought was going to turn into an outbreak. Basically got what looked almost like a bug bite or chicken pock on my upper/inner thigh, but then it just went away. I actually got some several months back on my chest, same thing, kind of rose up, itchy, then went away quickly, like in the same day. I've wondered if this could somehow be shingles related? I know it doesn't really fit the typical signs except for the neuralgia feelings. Anyway, just a thought I thought I'd mention it, but I don't think there is anyway to test for it? I had chicken pox as a kid. I'm only 42 and generally healthy, but I guess some ppl get shingles early, and I've seen stories of ppl who experienced it on their genitals. Anyway, given that I haven't had an ob after being off the meds, and haven't had one since the initial episode, i'm guessing I have type 1, and this neuralgia stuff is just unlucky atypical symptoms. I'll test again in another 7 weeks or so. that will be almost a full year after the initial ob and 3+ months after stopping the meds, so am thinking i can probably start to assume that i don't have type 2, and hope i can find relief for these symptoms regardless of what it is!!
Thanks again!
I have been off the meds now for about 7 weeks I think. No change, no outbreaks, same sensations in my thighs/groin area. Sometimes better sometimes worse. A couple of times (both during and after taking the meds), I've had what i thought was going to turn into an outbreak. Basically got what looked almost like a bug bite or chicken pock on my upper/inner thigh, but then it just went away. I actually got some several months back on my chest, same thing, kind of rose up, itchy, then went away quickly, like in the same day. I've wondered if this could somehow be shingles related? I know it doesn't really fit the typical signs except for the neuralgia feelings. Anyway, just a thought I thought I'd mention it, but I don't think there is anyway to test for it? I had chicken pox as a kid. I'm only 42 and generally healthy, but I guess some ppl get shingles early, and I've seen stories of ppl who experienced it on their genitals. Anyway, given that I haven't had an ob after being off the meds, and haven't had one since the initial episode, i'm guessing I have type 1, and this neuralgia stuff is just unlucky atypical symptoms. I'll test again in another 7 weeks or so. that will be almost a full year after the initial ob and 3+ months after stopping the meds, so am thinking i can probably start to assume that i don't have type 2, and hope i can find relief for these symptoms regardless of what it is!!
Thanks again!
MEDICAL PROFESSIONAL
Yes, I would say if you test positive (above the 3.5 index value), a higher dose of antivirals would be useful to try to see if you can get rid of these symptoms. If you knew these symptoms were not caused by herpes, would they bother you as much?
Good that you have a loving and patient partner, sounds like a keeper to me!
Terri
Good that you have a loving and patient partner, sounds like a keeper to me!
Terri
Thanks again. ya, i'm pretty much assuming that herpes is the culprit, the "atypical" symptoms and negative tests are the only things that give me doubt but I think at this point it's hard to imagine it's something else. Such is life. I'm "good" with "waiting' on the sex front, I know her very well, we were together for 3 years and recently rekindled after 5 years, and i'm incredibly grateful for her understanding and patience, and we love each other very much on many levels, so I'm lucky in so many ways. and we'll be as creative as we an i guess!! More than anything, I'm just hoping these symptoms subside, it just effects my self-confidence, work, i don't want to work out, etc., hoping to get relief. anyway, to that end, and i promise this is the last question, and maybe it would be best for my dr at the time, but let's say i test positive for type 2 in 3 months, would it maybe be prudent to take a heavy dose of Valcyclovir for a while to see if it helps with the thigh sensation issues? i guess i can cross that bridge at the time but would be interested if you had any thoughts. Thanks again, this is a very helpful resource. There seems to be a disconnect between what every day Dr.s know aobut the disease outside of "the norm", if it doesn't fit in the box of what is "supposed to happen" they kind of throw their hands up. Point being, just wanted you to know that your knowledge is valuable and appreciated. Best wishes and Happy Holidays :)
MEDICAL PROFESSIONAL
Well, your initial symptoms do sound worrisome for herpes.
Your can get the western blot by contacting the University of Washington and asking them to send you a test kit or we can order that for you from our clinic. Redness after masturbation would NOT be sufficient to test, no. It needs to be something more "dramatic". Some clinicians still don't know that PCR is the preferred test for herpes swabbing. If it were me, I would call where you might be go for swab testing before you go in and ask if they are able to do herpes PCR swab testing. The materials used to collect the sample are most often the same ones that are used to collect a culture, but what they ask for on the lab slip is different.
The most careful thing to do about sex is to wait to have intercourse until you have waited long enough for an accurate test, yes. But you can still do things like mutual masturbation or just getting to know each other better. Has she been tested?
Terri
Your can get the western blot by contacting the University of Washington and asking them to send you a test kit or we can order that for you from our clinic. Redness after masturbation would NOT be sufficient to test, no. It needs to be something more "dramatic". Some clinicians still don't know that PCR is the preferred test for herpes swabbing. If it were me, I would call where you might be go for swab testing before you go in and ask if they are able to do herpes PCR swab testing. The materials used to collect the sample are most often the same ones that are used to collect a culture, but what they ask for on the lab slip is different.
The most careful thing to do about sex is to wait to have intercourse until you have waited long enough for an accurate test, yes. But you can still do things like mutual masturbation or just getting to know each other better. Has she been tested?
Terri
Thanks Terri, this is very helpful! To answer your question, the first symptoms were maybe the size of a dime but oval, one on the underside middle of the shaft one on the top middle. PA at clinic took look at top one and didn't have anything to say, looked at the bottom and said it looked like a Herpes lession. Admittedly, did look cold-sore like so I had my worries. 2nd symptoms immediately following first were as described above, almost like a sunburn, itchy mostly, slightly crusty but didn't blister like oral cold sores i've had all my life. i did have another maybe a month later that sort of came up raised rash like, not blisters on underside middle, and was gone by morning. that is my assumption about the prostitute too. and actually I asked my ex to get tested and she said she tested negative so not sure why I even mentioned her. Honestly, I'm over who gave it to me, doesn't matter at this point, I just want to figure out for sure if i have it or not and how to get rid of this sensation driving me crazy. ok, i will stay off the meds and get western blot at the end of February. How do I go about getting the WB test come that time? How do I best get the PCR if I get symptoms? It's been like 4 months since anything that kind of stands out, but my penis does get pinkish/irritated sometimes after masturbation. Would that be sufficient to test? Side note: Why the hell would they give me a culture if a PCR is more effective?!? Lastly, I'm assuming, given my "prodromal" symptoms, irritation, etc., that I should probably abstain from penile sex even with a condom with my girlfriend until i get this all figured out? Seems to be prudent. Ugh, would be nice to move on with life, but I DON'T want to put her at risk until I know we're committed and obviously given how i most likely got it ("protected"), it seems like I'm pretty contagious at this point. Thanks very much again for your time, consideration and sympathies. Nice to feel like I have somewhat of a game plan at least.
You are reading content posted in the Herpes Forum
Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
