The give away on ocular herpes (Wiki calls it “herpetic keratoconjunctivitis”) is that it usually only affects one eye. The symptoms could range anywhere from a dry and itchy eye, to a scaly patch, to a numb, scaly patch, to a completely scarred over cornea.
The friend I know with ocular herpes just had one small bad patch that would flare up painful every now and then. When he saw the opthalmologist, he got antiviral eyedrops and was told not to touch that eye.
You’re about halfway there.
If a patient presents with the classic blisters, the doctor will take a culture, look at the cells under the microscope, and identify certain characteristics consistent with herpes infection. If the characteristics are there, the patient is definitely positive for herpes infection. Unfortunately, it has a high rate of false negatives, as the virus can be present without necessarily bringing up the characteristics found in the microscopic examination. Also, the culture does not differentiate between HSV-1 and HSV-2.
A different culture test called a PCR DNA test exists and is more accurate, but it’s availability appears to be limited.
I got my preliminary diagnosis by culture - I was positive for herpes. Wanting to be able to tell future partners whether I had HSV-1 or -2, I asked my doctor to run a blood test which checks for antibodies. A blood test called the Western Blot tests for specific antibody proteins which differentiate between HSV-1 and HSV-2. It is 99% accurate. The test can show negative for both, positive for HSV-1, positive for HSV-2, or positive for both. Just my luck, I was positive for both.
From my reading, I have never come across an instance where someone had antibodies for either HSV but was considered negative for the disease. Unlike, say tuberculosis, where you can test positive for exposure but not be infected, if you test positive for antibodies, you are infected with the virus. I think this is because the virus resides dormant in the nerve pathways from the infection site up to the ganglia near the spinal cord. The immune system can never absolutely defeat the infection as it can with other infections like tuberculosis.
However, if the virus is dormant, and the immune system is strong enough to keep it from re-activating outside the nerve pathways, then the infected person may never show any symptoms or ever be infectious. This is why 85% of those with herpes don’t know they have it. They never get noticeable symptoms, never get tested, and never get a diagnosis.
The reason you can kiss your boyfriend when he has cold sores and not get them is probably because you were exposed to HSV-1 long, long ago, and your immune system is able to both keep the current dormant virus you have in check as well as squash any incoming virus the moment they step foot on your face. However, I suggest you confirm that with a blood test to be sure.
I may very well be. I usually give people the benefit of the doubt, and I tried really, really hard in this case. It’s just that his identical, robotic intonations of “Oh/I’m so sorry/you’re dealing/with this.” when I told him about my UTI and then about my herpes diagnosis was so strange, I didn’t know what to make of it. After puzzling over it, I realized what it was: he sounded rehearsed and not in a good way.
He didn’t apologize. He didn’t sound embarrassed. He didn’t get angry - like I was accusing him of something he would never do. The more I thought about it, the more his reaction seemed to be that of someone who was in deep denial of his condition and the risk he put others at, and when faced with it, gave a very numb recital of sympathy, and then he ran away. I never heard from him again.
I could list several dozen other impressions I had from the time we spent together, but there’s just no way I can convey the gut instinct I had once I stopped letting my gonads do the thinking and returned to my brain.
And, yes. At that time of my life, I was naive enough to believe that because I was honest with my partners about my sexual history and STD status, they would be the same with me. Believe me, I’ve been disabused of that notion. Thoroughly.
Still, if I’m dating someone and there is the remotest possibility of sex, I tell them that I have herpes. Period. Whether I have an outbreak or not. This is because the virus can be transmitted whether the infected person has symptoms or not, and it can be transmitted even if there is a condom in use, if the infection site is not covered by the sheath.
I have posted it in dating profiles (and gotten thank you letters from other women for being so brave, but not a single non-scary response from men).
However, I am speaking of genital herpes, not oral herpes. I can completely understand someone not posting warning signs if they happen to get a cold sore near their mouth occasionally or if they have a more competent immune system than mine.
Well, you may have a point here. Thank God, I dont have the genital variant (I already got two nasty places, I dont need all of them), but still, the oral variety is quite contagious. And it wouldnt cross my mind to mention it to a possible date if the virus is not acting up.
But I understand your attitude and anger. As I said, I got it from my dad when I was a toddler, there’s not the same resentment and feeling of betrayal you may have towards the guy that transmitted it to you.
At this point, the anger is long gone. Whatever was going on with him, it had nothing to do with me. I have a viral infection that a large fraction of the human population also has, and the clinical details are the same no matter how any of us got it.
What I’d really like to see now is a lessening of the stigma and more open talking about what it means to have an STD, what the ethics of sex and relationships are in that context, and what steps we can take to make sure everyone is as healthy as possible.
But . . . okay, if I saw him again, I’d probably kick him in the balls. Just on principle.
Oh, I know exactly what precipitated that first outbreak - after an encounter with a food allergen that sent me to the ER and put me on a round of steroids the little bastard blisters erupted - hardly a wonder, as the allergy treatment had suppressed my immune system. The doc put me on anti-virals, but it was still pretty awful as I had to complete the short course of steroids as well.
Now it’s usually precipitated by sun exposure, usually in spring when I start spending more time outside. Yes, yes, I use sunscreen but I have the complexion of a vampire so it’s not a perfect solution. I also wear a broad-brimmed hat, but again, it’s not a perfect solution. As my skin adjusts to more UV I stop getting them (until the next spring).
At least the damn things seem to heal up quickly when I do get them.
I had a course of steroids back in November, and I’m astonished they didn’t send me into outbreak hell. I haven’t noticed any problems with UV exposure, but then, even in California, I don’t get a lot of that.
Glad yours heal quickly.
Okay, so exposure to UV or steroids makes things worse? Thats news to me.
It can, it doesn’t always. These things do vary from person to person. Many things can act as triggers, but what triggers an outbreak in one person may have no effect on another.
Say I’m dating a woman infected with both oral and genital herpes. What can I do to reduce the risk of getting infected through intimate contact? And how effective would those precautions be?
Lakai, first, get your own Western blot test to see if you have herpes. If you have the same type of herpes she does, you really don’t have to take precautions other than maybe not getting all fluid-exchangey when one of you is having an outbreak.
If you do not have herpes, understand that transmission is most likely during an outbreak but can occur at other times. Condoms protect only the skin they cover. If her outbreak is in an area that you will end up touching with bare skin (like, say, your scrotum against her perineum during missionary sex), a condom is not going to help. The statistics I’ve read is that condoms have a 25-50% success rate at preventing infection over the course of a year.
The best possibility is for her to be on a daily dose of valacyclovir (Valtrex). It’s the only medication shown to prevent infection in discordant couples.
A lot depends on how bad her infection is. I have a friend who’s been in a discordant marriage for more than seven years, and she still hasn’t been infected. As far as I know, all they do is avoid sex when he has an outbreak.
Quoted for truth. Of all the pain I have endured in my life a herpes outbreak in my one eye is in the top three (others in the top three Shattered heel bone, a transmission that fell and landed on my hand.)
I remember being 4 years old and going from 20/40 to 20/400 in about a day. Scared the crap out of me.
When I was a child exposure to the sun would trigger an outbreak either in my eye, or in my mouth. These have tapered off as I have gotten older. Also as I have gotten older, the outbreaks have become less and less, but if I am overly stressed, I can expect a cold sore on my lips.
If pain alone can constitute an outbreak, then I’m in “outbreak” mode the majority of the time, with short, intermittent periods of relief. Seems like the opposite of a textbook case of herpes. Or do some people with herpes really suffer the majority of the time? That’s my main question here.
I’m skeptical of this “must”- if a simple reaction to Abreva can diagnose herpes, why do doctors use blood tests instead? If they were ingrown hairs, they would have healed soon anyway, or maybe some property of the Abreva helps both skin conditions.
I try this, but I already know that I’ll be positive for HSV-1, because I get the lip blisters occasionally. And they behave exactly as oral HSV-1 typically does, so I’m not sure I would extrapolate to this other, not particularly similar condition. I guess if I have HSV-2 as well, I’ll consider the mystery solved. Strangely I did have some blood work done earlier this year, after one of my countless trips to the doctor about my mysterious nerve pain, and I don’t think they even checked for herpes. Stupid doctors.
Herpes infections exist in two forms: dormant and active. When the infection is dormant, the virus resides only in the nerve pathways it infected and is not replicating. When the virus becomes active, it begins replicating and, in doing so, either directly causes symptoms (by, say, inflaming the nerves or surrounding tissues, creating blisters) or creating proximal causes (like the lymph nodes engorging with white blood cells to fight the infection, thus becoming enlarged and painful).
If you are having symptoms, you are, by definition, in an active phase of the infection. And yes, there are some people whose viral infection is active more often than it is dormant. If they have, for instance, a suppressed immune system due to HIV, steroids, autoimmune problems, or other causes, they won’t be able to fight the infection and drive it back to the dormant stage.
Others may have nutritional deficiencies (L-lysine, an amino acid, seems particularly key to fighting off outbreaks), extremely stressful lives, or other factors which allow the virus to remain active.
I estimate that about 30% of the time, I have some symptoms of an active infection. These range from blisters to nerve pain to swollen lymph nodes to exhaustion. I find that when I take L-lysine as a supplement, cut down on arginine intake, exercise, and find stress relief, my symptoms abate. When I have prescription medication coverage, I take a daily dose of Valtrex and get nearly complete relief.
In answer to your main question, yes, some people have excrutiating symptoms that interfere with the quality of their lives, and they are not able to find relief through medication or lifestyle changes. I’ve been on herpes support boards where a small number of people found solace with others in similar circumstances. More than one of them were in such pain and found it so difficult to discuss the condition with friends or other loved ones that they felt their lives were ruined.
That’s an understandable suspicion. I made that statement as a diagnosis of exclusion. I know that I have herpes. Docosanol does not make other conditions better. In fact, it’s side effects would probably make any non-herpetic skin irritation worse. I don’t know about your ingrown hairs, but mine tend to stick around for a while (until I pry them out with a needle and pluck them, then wait for the breaks in the skin to heal, that is), and one application of docosanol made a huge difference.
I’m sure there are some who see what they think is a cold sore, put some Abreva on it, and if it gets better, self-diagnose themselves. However, that does not meet the standards of epidemiology and infectious disease medicine. Microscopic examination of cultures taken from active blisters or a PCR test can confirm the presence of the herpes virus but have a high rate of false negatives. The Western blot is 99% accurate, differentiates between HSV-1 and HSV-2, but usually can’t be done until several weeks after the initial infection, when antibodies have had a chance to build up.
Fifty years ago, it was accepted that any cold sores on the mouth were caused by HSV-1, and that if you had HSV-1, it would manifest as cold sores on the mouth.
This is no longer true.
If you have oral herpes, it could just as easily be from HSV-2 as from HSV-1, and the only way to tell for sure is to get a Western blot test. HSV-1 and -2 behave exactly the same, have exactly the same symptoms, and exactly the same presentation. There is only a very small difference in the virii’s genetic code, which is accommodated by the antibodies, which is what the Western blot tests for. You cannot tell HSV-1 apart from HSV-2 without a Western blot test or full genetic mapping of the virus.
As for your nerve pain, you should only expect it to occur where the infection is. Oral herpes infects the trigeminal nerve (in the face). Genital herpes infects the nerves leading to the sacral ganglia. If you have oral herpes but are having foot, leg, or genital nerve pain, it is not because of the herpes. There is another explanation.
Nerve pain can be caused by many, many things, and it is notoriously difficult to track down. You might have a pressure on a nerve emerging from your spinal column because of a bulging or herniated disk or a damaged vertebra. You may have sciatica. You may have a muscle injury that is putting pressure on a nerve. You may have diabetic peripheral neuropathy. You might even have shingles. If you have no conclusive diagnosis and you have sufficient medical coverage, go see a neurologist, and tell him about your cold sores and symptoms.
And if all that were not cheerful news enough, I ran across this mention in my research:
If you have HSV-1 oral herpes and a variant of the ApoE gene known as ApoE-4, a gene which is a known risk factor for Alzheimer’s disease, you may be at heightened risk for developing Alzheimer’s.
The gene appears to allow HSV-1 infections along the trigeminal nerve to remain active instead of dormant, and HSV-1 DNA has been found in the areas of the brain affected by Alzheimer’s amyloid plaques.
Currently, there is no preventative treatment or cure for Alzheimer’s. There’s no cure for HSV. However, if you have HSV-1, and it’s an oral, ocular, or facial infection, you might see about being tested for the ApoE gene (for Og’s sake, don’t share the info with your insurance company), and if positive for the ApoE-4 variation, consider staying on a permanent course of HSV antiviral medication like acyclovir, valcyclovir, famciclovir, and penciclovir. Of the four, only acyclovir is now available as a generic medication. A quick google showed a bunch of sites offering acyclovir without a prescription, but as it’s not approved for over-the-counter sales in the US, I have to question the legality. Prices, even for the generic medication, are still quite high. It’s not going to hit the $4/month generic list for quite some time.
True. I just assume it is likely HSV-1 because I’m fairly certain I didn’t pick up the oral virus doing anything sexual, which I believe is the usual cause of oral HSV-2? I guess I should have said, I’m sure I have one or the other, so the result will only tell me anything new if I have both.
Why? Couldn’t I simply have a different herpes virus in each location?
Well, just because you didn’t do anything sexual with your mouth in the timeframe in which you were infected doesn’t mean the person you got oral herpes from didn’t. It just doesn’t matter anymore. HSV-1 can infect mouth or genitals (or anus or fingertips or eyeballs or Spongebob Squarepants), and so can HSV-2. HSV-2 is no longer “sexual” and HSV-1 is no longer “kissing”, so to speak.
If you haven’t had a Western blot test, you don’t know if you have HSV-1 or -2 (or both, though I hope not). Don’t guess. Get a test.
Absolutely you could. I’m sorry if I missed/forgot a mention of genital involvement. But again, the location does not determine the type of herpes, and the type of herpes does not determine the location. You could have oral HSV-1 and genital HSV-2. You could have oral HSV-2 and genital HSV-1. You could have oral and genital HSV-1. You could have oral and genital HSV-2. You could even have hit the lottery from hell and gotten oral and genital HSV-1 and -2. (I think that covers all the possibilities.)
I suggest the test for the following reasons:
Unfortunately, the one thing the test cannot do is tell you which version of the virus resides where. If you have HSV-1 only, well, that’s the cause of both localities of infection. If you have HSV-2 only, same thing. If you have both HSV-1 and -2 (like I do), there’s no telling which virus is causing which infection.
I just want to thank phouka for the wonderfully informative thread and all her thoughtful responses.
Last question - do you have a background in medicine, or did you learn all this through self-education?
My name is Isamu and I have herpes.
My wife gave it to me in our first year of marriage. I said “Hey, you gave me herpes!” and she said “Grow up. Everyone has herpes”. (apparently it’s very common in Japan?)
After the initial outbreak on my lower lip (one sore) I’ve only had one recurrence - again, lower lip, one sore. The second time I could tell it was coming by the tingling sensation and I immediately spread the anti-viral cream on it even before the sore showed, and the early application seemed to help in reducing the size and duration of the outbreak.
Lakai, I consider myself a well-read layperson. It helps that my mom is an RN, and I can pepper her with questions (though, not so much about herpes. It makes her uncomfortable.), and, of course, the SDMB is both a wealth of resources and an excellent training ground for research and argument. Also, one of my coping skills is to read everything I can get my hands on about whatever problem I’m dealing with at the time.
Isamu, I’m terribly sorry about that. It does point out the difference in cultural acceptance, though, most people view oral herpes as an inconvenience and genital herpes as a scarlet letter. I have a friend who got genital herpes from her husband’s oral herpes. Very not fun for her, and her husband felt horrible.
I’ve also worked in a very conservative religious private school, and I was amazed at how many of the kids were running around with crusty cold sores on their lips. I think I was the first person to point out that if we had a case of flu or rotovirus in the population, it might be a good idea to disinfect not just doorhandles and bathroom surfaces but also the icon all the children would touch when they entered or left a room. (Yes, even holy objects can carry germs, guys.)