continue to follow up regularly with the dermatologist to try to get to the bottom of what is going on.
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.
I recommend seeing a dermatologist at this point.
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?
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?
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?
be seen every time you have symptoms. if they suspect herpes, they can do a pcr swab.
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.
much more likely to be a folliculitis or bacterial skin infection going on.
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?
you can have recurrences every 2 weeks but most people don't have them that close together.
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...
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.
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.
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.
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.
no, you can't contract genital herpes from the doctor's office.
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.
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.
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.
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.
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.
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.