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HSV 2 Low Igg Positive...welcome to my nightmare

Hi everyone.

About two weeks ago I noted what looked like an ingrown hair on my abdomen.  This is nothing unusual; I'm very prone to them, as tend to be other members of my family.  After a week the area was still swollen (again, not unusual.  I'm very fair skinned--when I get acne it takes 3-4 weeks for a pimple to vanish, sometimes longer), but I noticed that another follicle next to it also looked infected.  I put some Neosporin on the area, but within a few days the area hadn't gotten better, the redness had spread.  I wasn't in any pain, nor did the rash itch or fester.  The only thing worth noting was that there seemed to be whiteness around the affected hairs, like dry skin which peeled a bit.  

With the infection seeming to spread, I had a mild panic attack and decided to go to urgent care (it was a Saturday).  The Lab assistant examined me and thought that it might be MRSA, which is known to get worse when Neosporin is involved.  I explained to her how the infection started, and that the swelling didn't really spread until I put ointment on it.  I asked about STDs, and she did a routine blood test for Syphilis and HSV, just to be on the safe side, but told me that because I didn't have any other symptoms that a prescription ointment would clear it up.  I started using the Mupriocin she prescribed, and the infection had drastically reduced within about 4 days.  I did experience some skin peeling, but otherwise no pus, crusting or bleeding or any other kind of discharge.  I also kept the area bandaged with gauze, which seemed to help.

Nobody from the Urgent Care clinic ever contacted me with my results, but I figured I should check in just to be sure.  Whoever I spoke to--I'm not sure who, she never identified herself--told me I had genital herpes.  My blood ran cold--I hadn't engaged in unprotected sex, I didn't have any symptoms beyond the swelling and dry skin, the ingrown hair didn't appear after intercourse, and (thankfully) my genitals were not affected.  The woman didn't offer me any treatment, so I immediately called my doctor paid him a visit.

My doctor took a look at the rash and declared it folliculitus--infected hair follicles to the uninitiated--and noted that he had no reason to suspect anything else.  I gave him a copy of the pathology report and lo and behold both the IgM and IgG tested positive for HSV 2, but in the low range of 2.4 on the IgG and 2.6 on the IgM (which, I gather, is a common occurrence around here). I didn't have any kind of detection for HSV 1, which my doctor also thought unusual.  He was aware of the common false positives, particularly in the low range with the HerpeSelect tests, but thought the results were suspect anyway since A) there was no detection of HSV 1 which is virtually unheard of, B) I had no symptoms besides the rash, C) my genital region was not affected and D) the rash was visibly clearing with the antibiotic ointment.

At my insistence, my doctor is testing me using the Western Blot test for confirmation, so I should have results next week.  That hasn't stopped me from panic though.  I begged him for some Famciclovir for post-exposure prophylaxis to stop the infection from getting worse, if indeed I have one at all, but he would only give me Valtrex.  I can't seem to find any information on the dosage I should be using, or the efficacy of Valtrex for post exposure.  I'm taking 500mg twice daily, but I'm not sure that is enough.  I pray the blot test is negative, and that this whole nightmare will end.

Worse, if my test DOES come back positive for HSV 2, I don't know what I'll do.  My doctor acknowledged that the affected region of my body is not one that can be protected by condom use.  In essence, there is nothing I can do to prevent the spread of the virus to anyone that comes in contact with my abdomen.  Or, if somehow I have oral HSV 2, and the rash is just coincidental, there's nothing I can do to prevent the spread from kissing someone.

I believe it's my personal responsibility to prevent the spread of any contagion that infects my body, be it strep or something as sinister as HSV.  The thought of never being able to kiss anyone again, or never being able to make love crushes me with sadness.   I'm a very lonely guy as it is, and I've been trying to pursue a long-term meaningful relationship for years without success.  If I am infected, the chances I could ever meet someone will plummet even further.  After all, how do I explain to a potential lover that we can never kiss or have sex without the risk of passing on the infection?  How can I respect someone who would accept disease as part of our relationship.  Most important of all, how can I willingly pass on this infection to someone I love and want to protect?

I'm sure many of you have wrestled with the same questions, and understand the feeling of guilt and disgust that I feel.  There is no way to prevent viral shedding or spread of HSV in my case.  Even if I never have another outbreak, I'm risk for anyone to touch.  How do I cope?
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101028 tn?1419603004
continue to follow up regularly with the dermatologist to try to get to the bottom of what is going on.  
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Avatar universal
Thank you, but I already did.  He couldn't offer a diagnosis and offered no treatment options.  I started applying a Corbetasol last night courtesy of my roommate with psoriasis, and the swelling and redness have reduced dramatically, which is great, but I want to knock this thing out once and for all.
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101028 tn?1419603004
I recommend seeing a dermatologist at this point.
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Avatar universal
Hey Grace, an update and a question for you...

I joined the expert group and conferred with Dr. Handsfield last month and ultimately took another IgG blood test for HSV2.  This one had a different scale of measure, using an antibody range, but glory be my levels were within range, thus it came back negative for HSV2!  Both my PCP and Dr. Handsfield agreed based on the data.  It's thrilling news.

But I'm still getting these odd breakouts in my groin/lower abdomen, generally in the same area, give or take a centimeter.  This makes 5-6 breakouts in about 6 months, none as severe as the first, but usually taking the form of 1-3 infected follicles (I'll spare the full symptom descriptions since it's already in this thread).  I keep using Bactroban and the sores go away, but generally for no longer than 3-4 weeks.  

So then, what the heck is causing this infection, and how to I get rid of it, especially if it's contageous?  My roommate cave me a cortical steroid called Clobetasol to try, and it seems to be helping; redness and swelling have reduced dramatically overnight.  I don't know if that tells you anything, but I'm still concerned.  

My PCP retired last month, so I'm between doctors at the moment.  At any rate, he's dismissive of any danger, particularly after this most recent test.  Any advice you can offer?
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Avatar universal
I just want a straight answer!  Why is everyone so dismissive of a highly contagious, incurable potentially lethal disease??  How am I supposed to live any kind of life this way?  These may seem like angry, ignorant questions--and maybe they are--but I don't want to put anyone else at risk.  Am I expected to tell any potential sexual partners "oh, by the way, I might have HSV2, there's no way to protect against it, no cure, and no way to know if I'm contagious?"  Do I really have to remain celibate for the rest of my life out of paranoia?  

I've done everything to prevent contracting this disease and still -might- have it anyway.  What the heck more do I do?
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Avatar universal
Saw my dermatologist (one of the best in Los Angeles) for my most recent lesion.  After evaluating my test results and examining me, he said he couldn't tell if my outbreaks are due to HSV2 or some other bacterial cause.  Given my sexual history and frequency of symptoms, response to Bactroban and antivirals, he thought it unlikely that I could have contracted the virus.  

Then he looked at the abscess which had already begun to heal in under a week, and said it was likely HSV because he couldn't think of anything else that would reoccur if I had applied Bactroban--that folliculitis, MRSA or any other bacterial infection should have been knocked out after one application.  He also didn't think the sore consistent with an allergy.

His final conclusion--"Maybe.  Who knows? As long as you don't have a sore, you can't infect anyone else."  

Now, we all know that last bit is NOT true, which about sent me through the roof.  Besides that, he said the only accurate test is a swab (which is also not the case), but wouldn't perform a swab test because he thought the lesion had already healed too much!  He also said blood tests are notoriously unreliable, and that I shouldn't trust them.  When I asked him how all my partners could test negative and I still could have contracted HSV2, he told me that I could really pick it up anywhere.

So now my question is about asymptomatic shedding and the possibility of picking up the virus in a non-sexual context.  We all know the virus is most contagious during an outbreak, but what are the odds of passing during an asymptomatic phase, particularly in male to male sex with condoms?  And for that matter, is it possible to get the virus elsewhere, other than sexual contact?
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101028 tn?1419603004
be seen every time you have symptoms. if they suspect herpes, they can do a pcr swab.

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Avatar universal
Hi again Grace.  I again require your expertise.  

So I have another lesion that has appeared in the same general area as the others--lower abdomen/upper pubic region.  My doctor still insists that my chances of having HSV2 are low, and none of my partners have tested positive or exhibited symptoms.  But here I am again with a lesion, which marks the 4th separate occurrence in under 3 months.  This one seems to have progressed faster than the others--rapid swelling and white bumps appearing in a few hours, skin peeling 36 hours later.  Again, no itching, burning or pain, just an unseemly sore that doesn't crust; it just stays open without bleeding.  No lymphatic swelling this time either.  And thankfully, my genitals remain unaffected.

I can't seem to get answers.  I've contacted the CDC for further information, but of course they will not provide diagnosis, and based on my symptoms and test results, they're just baffled.  I've been keeping a symptom journal, and I can't figure out what is causing this.

So then, what is the likelihood that this could somehow, someway be HSV2 related with such frequent but atypically symptomatic outbreaks and atypical test results, and what can I do about it since antivirals have no affect?  What else could the cause be?  How do I stop this and get answers.
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Avatar universal
Thank you Grace!
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101028 tn?1419603004
much more likely to be a folliculitis or bacterial skin infection going on.  
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Avatar universal
Well that's...frustrating.  I have another lesion, like my earlier post said albeit much less swollen than the last, which healed up roughly a week ago.  It appeared yesterday and today I'm noticing a VERY tiny abscess (visible with a magnifying glass) as usual based around a hair follicle.  I've also been feeling an odd tingling up and down the left side of my body: back, groin, thighs, calves, feet.  Again, no pain, burning or blistering and no glandular swelling this time either, and it would only be a month since the last abscess appeared, and only about 10 days since it healed; I still have some residual swelling.  I continue to do research though none of it offers peace of mind.

I'm doing as much reading on the disease as I can but can't find any kind of real answers.  Symptoms don't match typical HSV2, MRSA, Lyme disease, Shingles, staph or ingrown hair infection, and while the odd tingling could be attributed to some kind of viral nerve damage, I've not read of it covering such a wide area of the body.  Were it not for the atypical WB or IgG test, I wouldn't even suspect HSV2, as my doctor is dismissive of the possibility.  But it keeps happening, and without any correlation to the documented triggers of stress or other illness.  Any ideas?
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101028 tn?1419603004
you can have recurrences every 2 weeks but most people don't have them that close together.
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Avatar universal
Here's another question for you Grace.  With recurrences, I know they generally are at least 3-4 months apart, with a steady decrease after primary infection.  Is it possible to have more frequent outbreaks, a week or two apart, but still no other symptoms?

And any idea what causes false positives in HSV tests?  I've read everything from unidentified antibodies to other bacterial or viral infections...
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101028 tn?1419603004
folliculitis is very common and probably the cause of your symptoms but with the WB result you had, worth follow up for that part too.
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Avatar universal
Thank you for your advice and compassion, Grace.  It's just so scary and I feel so powerless.  I am a complete germaphobe and am very careful when it comes to safe sex...to the point that some guys are actually turned off.  That makes it all the more frightening and bewildering that I should find myself in this position.
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101028 tn?1419603004
definitely repeat your WB in a few months as the U of washington always suggests.

no more peroxide either! it's none chlorine bleach and does more harm than good to skin so it's not longer recommended for skin care.

these don't sound like herpes but due to the equivocal results on the WB, repeat the testing.
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Avatar universal
Hi again Grace,

So I had my Western Blot test and the result was negative for HSV 1 and atypical for HSV 2, though likely negative.  The U of W offered convalescent therapy if I had obvious symptoms, but since I didn't, my doctor recommended against it citing adverse health risks.  In the meantime I had contacted all my sexual partners that I had before and after I had my original rash which fully healed after about a month.  All my partners tested negative, which I found reassuring.  I discussed my situation with my doctor, and he thought there was no reason for further testing, that I was negative for HSV 2 and that my original rash was an acute staph infection.  I got a second opinion as well, and the second doctor concurred with my PCP.

Though I started to feel more confident and at ease, I find that still, anxiety plagues me.  I can't function with the fear that I could pass the disease to someone else or that all the conflicting data could somehow miss a positive result.  About two weeks ago I noticed swelling at a hair follicle in a similar area to where the original rash appeared.  It was just a red lesion which expanded to the surrounding hair follicles (which I could see were raised, rather like goosebumps).  Again, no pain, no itching, no blistering, no pus or crusting, just swelling which developed into a sore.  I applied Bactroban and peroxide keeping the area bandaged and the swelling went down after a few days, though the sore persisted.  During that time, I would occasionally notice a stain on the bandage, always if I had done a lot of walking (2-3 miles per day), orange-ish in color. Again, I felt no pain or irritation, and the infection did not spread, and the size of the sore continued to shrink.  After exactly two weeks since the original swelling appeared, as I cleaned the area after getting out of the shower I noticed small drops of blood on the paper towel I used to dry the area (I know better than to use my cloth towels for fear of spreading).   This happened again the next day, but since then the area seems to have healed completely but for some lingering redness.  One of the hair follicles still foams if I apply peroxide, but otherwise the skin looks healthy.

I alerted my doctor who thought the sore more symptomatic of recurrent staph infection or psoriasis and saw no reason for concern that it might be HSV related and no reason to re-test.  Yet I can't get over the lingering feeling of dread. Objectively I know I have little reason to suspect I have HSV 2, but I still have panic attacks over the matter.

I want to be healthy, and none of this seems to make sense.  All the data seems contradictory--atypical symptoms, indeterminate results, low risk factor, no positive partners.  I know you will probably suggest I re-test with a WB in a few months, but the agony of waiting and the cost involved will drive me out of my mind, not to mention that it still might yield uncertain results.  I've seen the horror stories on here about people who are constantly getting contradictory test results for months, even years after initial suspicion.  It's so frustrating that nobody can give me a definite answer or any kind of treatment.  I can't afford to put my life on hold, and I don't know what more to do.  I obviously can't discuss this with anyone, tests are unreliable, expensive and hard to come by (most of the STD clinics I've contacted for advice refuse to even run a test unless classic symptoms are present).  I just want to be healthy and ok!  Are there holistic or experimental treatments that I could undergo just to be on the safe side?

A side note--in the case of my Mother, she also thankfully tested negative for HSV 1 and 2; her infection was a result of streptococcal bacteria that she DID contract from unsterilized equipment at her OBGYN.  She's currently seeing a specialist for follow up treatment, so that's a good thing, though she is considering legal action against her doctor.
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101028 tn?1419603004
no, you can't contract genital herpes from the doctor's office.

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Avatar universal
So let me make sure I understand--regardless of where or how you acquire HSV 2, it always spreads from the genitals, whether or not you ever get breakouts there?  And I'm sorry, 1% chance of cross contamination is too high.  I would never want to put someone I care about through this.

On that note, Here's another question for you Grace...

Ironically, my Mother just called me very upset as she went to her OBGYN for a routine exam, and the next day broke out in a vaginal/perennial rash that itched & burned and had bleeding, pus filled lesions.  She immediately went back to the doctor, who told her it had to be a yeast infection.  But it kept spreading, and she's in incredible pain.  Her doctor then said it had to be an allergy to latex, though my Mom has never had one before.  At her insistence, they are testing her for HSV.

My Mom & Dad have been together and monogamous for 37 years; neither have ever had any symptoms like this.  She's currently undergoing culture testing; I urged her to get an IgG blood test and WB as well.  Have you ever encountered anyone who has gotten the virus from a doctor's office?  Obviously it's possible if equipment isn't sterilized between patients, but is there some other way that infection could have occurred?  Is this something you've encountered before?

As if I didn't have enough to fret over, I'm now terrified for my Mom and Dad and what it could mean for their health, lives and marriage.  I want to offer some kind of comfort if I can.
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101028 tn?1419603004
it makes no difference where you actually have ob's at. you shed the virus from the entire anal-genital area both with obvious lesions and in between. you only shed from the area of the lesions when you have them when they aren't on the actual genital mucosa.

you can get the risk of transmission to a male partner down to 1%/year. minimal risk and never a reason to stay alone.

if your WB is negative, you will need to repeat it in a few months since it was done too early to accurately reflect a newly acquired herpes infection.  
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Avatar universal
I spoke to my partners; if they weren't tested just before our intercourse, they have been tested since.  It would seem they are all negative, which makes my own test results even more questionable.  I'm praying the WB comes back negative.  If all my partners are, and the WB is, that's good enough for me.
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Avatar universal
I get tested for STDs monthly.  I had no idea that the standard battery of tests don't include HSV.

There is, apparently, no other test I can get other than the WB.  Again, the rash I have isn't consistent with HSV 2 infection, and it's not responding to antivirals in any measurable way, though it has been responding to antibacterial ointment.  I'm hoping if I am infected, the antivirals will at least stop serioconversion so the infection can't progress further than it already has.  

My doctor didn't say anything about waiting to test with the WB, though I have heard it's more accurate given the longer amount of time elapsed after infection.  At this point, I'm not discussing my plight with anyone until I know for sure that I have to.  There's no reason to cause any of my previous partners the same level of panic or humiliation that I now endure.  

The idea of being celibate and alone for the rest of my life is not at all an appealing one.  Short of access to the ACAM 529 virus, I won't have any other choice since the supposed infected area is in an unprotectable area of my body.
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101028 tn?1419603004
most folks don't get tested for herpes to know their status. odds are your partners aren't getting tested for it either :(

you have to wait at least 4 months after you last had sex to get the herpes WB done.   has your current partner been tested to know their own status?

canker sores are inside the  mouth. they aren't oral herpes. they aren't contagious.
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Avatar universal
Thank you for responding Grace! =)

I have never been tested for Herpes before, no.  When the first lesion appeared, it had been about 4-5 days since I had sex, and no, I don't have a regular partner (I wish I did).  I always discuss sexual health with every partner I do have, and I always pay attention for any sores, cuts, bumps etc on their body.  Never noticed any on any of my partners over the years.

My doctor wanted to do a swab test as well, but the lab he sent me to wouldn't do one.  He didn't have the proper kits on hand, either, possibly because he just moved offices.  

To be quite honest, he and I both were amazed that the HSV 1 came back nonreactive.  I've had horrible, horrible mouth ulcers my whole life (always inside, never outside on my lips or anything).  They'd be inside on my lips, my cheeks or even in my throat or tonsils, sometimes the size of a nickel.  Those would fester and bleed and be amazingly painful and would take forever to heal.  He told me he always assumed they were HSV 1 related which also made him suspicious of the test.  That he has suspected as much all the times I had seen him about them (yes, they were that painful) made me a bit suspicious of him.  

Just checked the rash, which but for one tiny area has reduced to just some mild redness.  I'm so scared...none of this seems to make any sense, and I don't even want to think about the consequences if the WB comes back positive, or the cost that all these tests and doctor visits will incur.
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