riverstyx

Incidentally where exactly is this seminar being held? In the United States, I'm assuming; but where?

@whitedaisies Well, then get busy making up for lost time, daisies!! "Spreadin it around the old folks home?" Lol that was funny, cause by the time we're all old, *everybody* has *something*! Seriously, for example, 50-70% of single women ages 45-65 have H (genitally). It really is so very common. So don't worry, I doubt you'll be spreadin' anything :)

@whitedaisies Daisies! How risque!!!!! LOL JUST KIDDING. YOU GO DAISIES!!! I am working on getting myself in shape and back in good health, as I have been dealing with other health complications of a very stressful year. But I know I'm going to get right back to where I was before, and I will even look better than I did before this past year. Good things can and will happen!

@whitedaisies Yes! I am keeping up on the research and continuing to read the medical literature. I figure I have gotten this far with my knowledge, so why not keep it up?! I always follow things that are of interest to me, and herpes is now one of them. I will keep you and everyone else posted whenever I hear anything. You have to be careful sorting through the news, and try to separate out the wheat from the chaff. Once you do that, you will see that there are continual advancements, some small, others bigger...but each one represents *progress*. I think a herpes cure will be one of a cluster of medical breakthroughs that happen within a ten-year time frame, as medicine advances and catches up with AIDS, Alzheimer's, and other conditions. Don't worry, daisies, it will happen in your lifetime, and by that, I don't mean when you are elderly. Well before that.

@whitedaisies Yes, Anna really is the leader in the field. I've spoken to her several times over the summer, and as much as I would like to call her and pick her brain again, I don't think I should. I think she doesn't like me. I think she thinks that, by this point, I'm a really annoying, nagging pain in the ass, lol. *But* each researcher and clinician you can talk to at the University of Washington will likely give a different response, based on their overall impressions of research progress in the field to date. If you're looking to get viral load down to levels that would make transmission risks negligible, then a therapeutic vaccine is the best hope. There are a couple that are in clinical trials. I do not know how they are doing, but I would say another few years and one or another should be close to being on the market.

@ screwed4life First, you came to the right place. I can tell you that everyone here to whom I have spoken to here is really so understanding, compassionate, and empathetic. First, as to diagnosis: even visual inspection by a *doctor* is accurate only 80% of the time. That means that for every four correct visual diagnoses, the doctor gets one wrong. So I respectfully disagree, herpes is not "obvious" to diagnose. If you have a fear of needles, then there are other ways to diagnose herpes that actually don't require a blood test: a swab for a viral culture, or DNA test by PCR (polymerase chain reaction) that looks for the herpes virus itself from fluid in a sore. Like you, I deal with depression, and my self-esteem was not based on a healthy foundation, and those things made dealing with the possibility of a positive diagnosis that much more difficult for me. It just made everything that much darker, and I felt suffocated by what seemed like a certain diagnosis at the time. Your expressions of a wish to commit suicide are extremely worrying, and I think that you speak to a therapist and doctor about those immediately. Like I said, depression makes everything seem so much worse. But speaking as someone who planned my suicide in exquisite detail years ago when I thought there was no way out, I can tell you, it does get better, although you cannot see it right now. You need to talk to us here who can help you, and I think you should talk to a therapist and doctor immediately, as in make the telephone call tomorrow, first thing. Medication will help even out the lows from the depression, and it will help to have a therapist to whom you can speak and express your feelings. Both of these currently help me. You are not a "diseased piece of meat." Far, far from it. I believe your feelings are a result of buying into the terrible stigma surrounding herpes, and you are giving all your power to a diagnosis that, medically speaking, is at bottom little more than a nuisance skin disease. You have a choice whether or not to buy into the stigma, but I understand first-hand how difficult it is to believe these things when dealing with depression, too. I will say it again: it can and will get better, but you have to put in the work of making it better. If you do, you will come out a healthier, stronger woman, with self-esteem that has a healthier, more stable underpinning. Use this website as a resource to talk to me and others. I don't know how many people are responding on the threads tonight, so feel free to email if you wish to talk further.

@whitedaisies Sorry daisies!!!! I don't want to get anybody down.....I tend to err on the side of caution is all......

Someone at University of Washington once told me they could have a cure "within 10 years," but like Dancer and everybody else pointed out, there really is very little funding. If I had to guess, the combination of ongoing research + little funding means that if a cure did come along, it would be in the 17-25 year range. A liberal estimate, no doubt, but one that I think reflects the funding realities. As one person pointed out, the herpes virus hides in certain cells nerves at the base of the spine, and a major focus of research is on trying to "flush" the virus out of those cells and into the open, where it can be attacked directly. Residing at the base of the spine, no medication can get to it.

When you go to the h opp weekend, do you just introduce yourself by your screen name, your real name, or both?

@WCSDancer2010 Hi Dancer, you mentioned the odds are not great if you just have a rash and no blisters. I've been wondering for quite a while, is there any way to tell the difference between a non-herpes skin rash and one that is due to herpes? I haven't seen much in the medical literature, except that genital rashes due to HSV mainly consist of erythema, but that can appear in many ways. I spoke with a couple of people who also had intertrigo who were wondering how to tell the difference between that and an HSV rash as well. I was hard-pressed to give them a good answer.

@Tryingtostayzen A type-specific IGG antibody blood test can tell you whether you have herpes, and which specific strain you have. However, depending on the test, you generally have to wait a few months before a blood test can reliably pick up a herpes infection, because it takes time for antibodies to form. Generally, a majority of people with herpes will form antibodies by three months, and the vast majority of those remaining, by six months. There are many commercially available blood tests out there, but you should know that they generally only test for one HSV antibody: gg-1 in the case of HSV-1, and gg-2 in the case of HSV-2. So there could always be issues with cross-reactivity with other antibodies if a positive result comes up. The most authoritative blood test is the Western Blot, which not only looks for 14 HSV proteins for each strand of HSV, but also incorporates a more accurate diagnostic technique. But you generally have to wait a little longer for a Western Blot to turn positive, because it takes longer for all of the antibodies it looks for to fall into place. The average time until seroconversion detectable by Western Blot is 68 days. Since that is an average, roughly half of patients require longer than that. I would say four months is a safe bet. Even if the result comes back "indeterminate" at four months, the banding pattern on the test strip will tell a lot about whether HSV proteins are starting to fall into place, or whether you merely had an issue with cross-reactivity. While HSV-1 may infect genitally or orally, HSV-2 almost always infects genitally. Well greater than 99% of all HSV-2 infections are genital. So I do not think that an oral infection is a realistic possibility if your HSV-2 blood test comes back positive, especially if you are showing symptoms that one doctor has already diagnosed as genital herpes. Negative swabs are common unless the area is swabbed very shortly (24-48 hours) after becoming symptomatic. That is because the herpes virus often died in the sore as the body effectively fights it off. So yes, they are by no means uncommon. Visual diagnosis is effective 80% of the time. That means a doctor will correctly identify genital herpes merely from observing symptoms, about 4 out of every 5 times. So there are two ways of getting a much more definitive diagnosis: wait a few months and get a blood test (preferably the Western Blot), or wait until another recurrence, and have the area swabbed for a viral culture, or a DNA test by PCR (polymerase chain reaction). A PCR test on a blister is the ideal means of diagnosis. The Western Blot is the ideal blood test for herpes.

If you can find a doctor that will do the swab--any doctor--then that is the best way to go. But there is a limited window of opportunity here because often waiting even a couple of days will kill the virus in the blisters, giving a false-negative if it really was a herpes recurrence. I thought about this, and I think the odds are greater than 99 to 1 that your blood test(s) were picking up "static" from other antibodies in your blood. Herpes antibodies don't just appear at one time (hence the undetermined first result) and then magically disappear later. The fact that this was the testing pattern suggests that something else in your blood set off the test the first time. But I agree that *getting swabbed* *as soon as possible* is the way to go here. If for some strange reason that is not a possibility, then a blood test that is negative at 1 (one) year post-exposure is most definitively evidence of a true negative. When I spoke to the University of Washington in August, they told me they had never heard of a case of antibody-formation taking longer than that. It does not happen. There are no reports of it in any clinical studies, nor in the medical literature.

@CarolTB Definitely get the area swabbed. Like Dancer says, a swab or a DNA test by PCR (polymerase chain reaction) are the ideal methods of diagnosing this, because they look for the virus itself. For the vast majority of people, a type-specific IGG antibody (blood) test for herpes will be positive by, at most, one year post-infection. I recently read a study by Dr. Anna Wald out of the University of Washington that shows that, in *extremely* rare cases, antibody-formation can take up to 18 months. But that is really so rare, that I wouldn't put too much stock in that as a genuine possibility here. The majority of people have antibodies by 12-16 weeks, and almost everybody else by 6 months. A few others sometimes take up to a year. Outside of Dr. Wald's study, I have never heard of it taking longer. While it is true that in the majority of cases blisters in the genital region are due to sexually-transmitted infections, other conditions besides herpes can cause them as well. A doctor will correctly diagnose the cause of the blisters just by looking, only about 80% of the time, so there is a significant margin of error here. I will note that most commercially available type-specific antibody tests look for one protein, and one only: gg-1 for HSV-1, and gg-2 for HSV-2. Generally speaking, gg-2 is a "late bloomer": it forms after most of the other proteins/antibodies have already formed and fallen into place. The Western Blot is far and away the best blood test for H out there, and even if it comes back, say, "indeterminate," the number of bands that show up on the test strip will tell you something about whether antibodies are in the process of forming or not. If it is several bands, then antibody-formation is taking place. If it is one, or at most two, then you can be confident this is not the case. The Western Blot is recommended not only because it looks for 14 HSV proteins, as opposed to other tests' 1, but because Western Blotting is an inherently more accurate diagnostic technique than any immunoassay method--which most commercially available tests use nowadays. First, I would do a swab and see where that gets you. If, like Dancer says, it comes out "indeterminate," then I agree the Western Blot is the best way to go. I believe that, given a year or more has passed since your suspicion of a herpes outbreak, if the Western Blot comes back "negative," you are well and truly negative, and can put the matter to rest.

@whitedaisies Hey daisies!!! I read somewhere on here a couple of weeks ago that you went to an infectious disease specialist, and that he doesn't think you have herpes after all!?! Is that correct?! If so, I think that is really amazing news. It just goes to show people, you really have to be very, very aggressive about questioning and following up on a diagnosis whose intrinsic probability is low. That's what I did, and if I didn't, I would have lost the next 25 years thinking I have H. Feel free to send me an email letting me know what's going on.

The "eye test" is only accurate about 80% of the time when it's a DOCTOR, meaning for people like us who aren't, the error rate is really, really high. I agree with everything people are saying here, and yes, you should definitely go to the doctor. Although a simple rash without eventual blister-formation would be unusual for a herpes outbreak, especially a first occurrence. If she performed oral sex, the main risk would be acquiring HSV-1, but the chances are good that you already have that, since a majority of Americans do by their teens (they have it orally). In that case, the body already has antibodies to HSV-1, making reinfection with HSV-1 genital very, very unlikely.

Well, it depends on the test. Commercially available herpes tests look for one viral protein: gg-2. Tests like the HerpeSelect ELISA and the Bioplex 2200 can usually, but not always, find the gg-2 protein with a couple of months. Tests like the Western Blot take longer, because they look for a larger profile of antibodies that each take longer to form (about 68 days for the Western Blot to become positive). The researchers I spoke with in the past about this said that it "generally" takes "most people" 3 months to test positive, and the rest, 6 months. A very few, like whitedaisies said, will take longer. It is basically unheard of for antibodies to take longer than one year to form. So wait about 6 or so weeks, then get tested. If you test negative, then I would say you're in pretty good shape.

Thanks!

@WCSDancer2010 Would you mind if I wrote you an email? I don't like to do so without first asking, but I know of no other way to ask than on this thread!

@WCSDancer2010 Thank you Dancer for the personal reassurances. You always seem to know what to say to make me feel better and more comfortable and safe and assured. If I may respectfully point out though, the issue wasn't having herpes, it was dealing with the depression and psychological fallout from my herpes scare. Remember, I got the Western Blot? And it came back "Indeterminate," but because only one single protein was reactive, and given it has been so very long since my last possible exposure, they said it was for all intents and purposes a negative? Plus, I got the HerpeSelect Immunoblot soon after, and it came back "Negative" on Friday. BUT the reason I was concerned was because I didn't want to get the ax from Adrial for continuing to post on here. I mean, he may be like "Ok, well, you got your negative test results, now move on, we've got no more room for you here." THAT'S what I was concerned about. But I was posting cause my H health scare has left me in a pretty difficult situation psychologically. So there's that that I'm dealing with. You and a couple of others said it's classic depression, and that I should at least temporarily take medication for that.

@whitedaisies I *can't* take it easy, daisies! I have to get myself to a place where I can do the things I need to do to get the things I want. I can't let anything stop me. Not now. Not ever.

Alright, I'm going to add my two cents in here. A 1.62 falls within a range where fully 60% of results are false-positives. I went through a similar situation this summer, and it was harrowing. But the ELISA is notorious for false-positives within the range that you are reporting. My result was even higher. I recommend the Western Blot, for two reasons. One, commercially available tests like the ELISA look for *one* HSV-2 protein, and only one--namely gg-2. The Western Blot looks for 14 proteins. Besides, western blotting is inherently a much more accurate technique than any ELISA method. They are many, many antibodies in our blood from a variety of mundane infections, and these often cross-react with the proteins being tested for on the ELISA. So I would reflex to a Western Blot if I were you.

@WCSDancer2010, @whitedaisies Thanks guys, I appreciate the help, and thanks for letting me know I'm welcome to post on here. I'll admit, I am/was a little worried that Adrial is/was going to give me the ax. I think I will put all my reservations about taking medication aside and just do it. This semester coming up is *the* most important semester of my life. I am finishing my Master's degree, and I will be applying for my Phd. Not only do my grades have to be spectacular, but I need recommendations from two professors whose classes I'm taking. To be competitive at the best schools, you really need truly exceptional, almost unique, recommendations. I specifically chose these two because they can and will write such recommendations for qualified candidates--but you have to do stellar work in their classes and really stand out in a way that they've not seen much before. Now, that would take an awful lot of work if things were all going fine, but now, it's going to take a Herculean effort. I have no margin for error. So I have literally about one more WEEK to get it together before classes start. Then, I want things to be nice and quiet and calm for the next four months while I concentrate on my schoolwork. Academia is my life, and I want my degree and I want to be sure I will be in the best program I can get into next year. If I "mess up" this time around, there's no going back to correct it. I've already lost the summer to this bullshit, and I definitely don't want to lose the autumn as well. Alright, well, now I'm off for dinner and drinks. Hopefully that will grease the rails a little bit :)

@WCSDancer2010 Ugh, depression?! Really? I'm not on any medications for depression or anything else. BUT if it would be a help, maybe that is something I should look into, although I'm not really interested in being on any meds long-term, I just don't want to become dependent on them. I've always had a therapist, and she is helpful. I just feel like all these issues surrounding my H saga have been quite harmful, and I feel like I'm not able to discuss any other issues with my therapist but those surrounding my H scare. So I definitely want to move on from that and talk about things that are more central to my life and my own psychology. So I guess I will talk to my therapist and ask her if she knows anybody that can evaluate me and prescribe some meds, if necessary? We'll see how it goes. I imagine that will be helpful in getting me out of this funk.

@whitedaisies Yes, music is my biggest comfort now. I listen to it *all the time*. When I'm home, I listen for hours and hours. When I'm driving, I have my ipod on. Even at work I listen to my ipod, and my boss is just across the hall! I don't care though, I need it right now. I play the piano too, and that has been a *big* help. I improvise a lot, and that helps to express my feelings in a constructive way. I know what you mean about posting. Now that I'm trying to put this behind me I'm more than a little embarrassed that I've posted the details of my personal history. I'm a *very* private person. But here they are, for all to see.. Oh well, it was necessary at the time, and it helped me come to some important answers about where I stand. But everyone here was very kind and empathetic and non-judgmental, and I'll always be grateful for that.

Hi whitedaisies!! Yes I have read many of your posts. First off I want to say you are definitely NOT an outcast, don't believe that bullshit for one minute or let others make you feel like that, educate them if you have to about the means of transmission and tell them the truth. If they still act weird after that, well, then that shows you what they are like. Yes, I am in therapy, and it is helping somewhat. Although over the past 3 months my sessions have gone to a pretty dark place. Nonetheless, they are a constructive and useful outlet for me to vent my feelings. I've been talking to a couple of lawyers about suing Focus Technologies for willfully ignoring the pleas from the medical community to update the guidelines for interpreting their test (I was a low-positive at first), and while the lawyers say I have a case, I am thinking maybe that would be more of a hindrance than a help? It would prolong the anger around H and further inhibit me from moving on with my life. I don't know.