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dr_h_positive

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Everything posted by dr_h_positive

  1. Aww, blister buddy! Love these :) I haven't yet put in as much thought about what I need to make of 2014 as I need to, but I'll give you 5 for 5! To manage my time better. No more snooze button! Lectures can't attend themselves. To not be afraid of pursuing love (if I get a disclosure post up here at some point this year, successful or not, I'll consider that progress on this one haha) To practice mindfulness always, in my friendships and with strangers. Abs! (I've got a long way to go on this one :P) Happy New Year!
  2. PAM!! You have a courage and a confidence that I can only aspire to. You know yourself completely, and have an insight into others that is both piercing and kind. You are unrelenting in your values, and as a result you are unfazed by negativity. Adrial put it precisely - you get to the heart of the matter, even if, after reading a narrative, the revelation you have to offer about a person's underlying thoughts or attitudes can be uncomfortable. Wisdom is listening to a stream and hearing the stones below. (I made that up, but think it describes you! You know what questions the soul is asking even if the story is defiant.) But most of all among all the things I could want to say to my Forum Mama, is that I can only hope for the privilege of one day experiencing, in person, a triple parenthetical (((HUG)))!
  3. @peterk (/tjones) @HerryTheHerp - Hallelujah and an Amen! And let's roll. :)
  4. Hey new friend :) Your story resonates with me even more because I had a very similar experience having to tell the person from whom I know I got HSV after having a flu-like primary presentation. (You can find my not nearly as well written or fun-spirited Hello World here: http://herpeslife.com/herpes-forum/discussion/1965/day-1-how-herpes-is-making-me-rethink-love-and-compassion#Item_13). I also didn't know him well before we began seeing each other casually, we don't live nearby because he's in the military, and there were definitely some cultural differences that I think contributed to him buying into the herpes stigma even more than usual - so much so that he judged me for having it even in the same phone conversation as I was telling him that he passed it to me. I also couldn't get angry at him and cared for his feelings, and kept the conversation as light and unaccusatory as it's possible to when talking over the phone about something serious. He subsequently went flatly into denial mode and refused my efforts to contact him for a few weeks, and we haven't seen each other since before I was diagnosed. I do wish I could hug him and tell him that we're both okay. Since then he texted to apologize for reacting like a jerk (his words), but it's no longer my place to ask about his blood test results (he's probably from the asymptomatic/sub-clinical ~80%) or to know if he's medicating it in consideration of future partners. Because he's not in as good a position as I am to treat the emotional toll of a diagnosis by reading and learning about HSV, I mainly worry that he will remain unduly angry or guilty. I sincerely hope that you and your girl will be able to have better communication about this than I did, and I know just from our brief interactions here that you will be amazingly supportive for both of you through this, no matter where the relationship goes. I hope your visit with the doctor went well. Did you get some cool foreign language cyclopills? There was a post about Pritelivir on here fairly recently: http://herpeslife.com/herpes-forum/discussion/comment/4814 I don't know much about it but will definitely try to learn more now, nice looking out for our little buddy in the news!
  5. So I tried to look this up, but am still not sure I can add much real value to this thread. I did find this http://www.ncbi.nlm.nih.gov/pubmed/20731556, which may be better evidence for the idea that you can find a journal article someone can interpret in support of anything than for the value of acetone in treating herpes sores, but there it is anyway. What this paper did is make an in vitro viral bio-assay, like a big grid of tiny petri dishes, and measure the effect of a bunch of plant extracts on the level at which the viruses were able to still synthesize their structural proteins. Eventually a certain dose of acetone did kill the virus. (A therapeutic index of 50 means that the lethal dose of acetone for half the "population" of herpes tested, divided by the minimum effective dose necessary to produce a reduction in protein synthesis for 50% of the population = 50). However, no in vivo trials have ever been done (ie no humans or animals were harmed in this production), and in large part the mechanism of action here is probably that acetone dries out the skin in general. There may well be reputable dermatologists who by observation or experience swear by acetone for prodrome tingling or even blisters, but there's no science out there that a physician could use to make a recommendation more or less supportable than his/her personal opinion. I personally have no experience with this so if y'all do decide to try this for your next OB I'd be interested to hear what you think. I don't think there is much risk of doing harm by trying this home remedy but be careful of getting acetone in your eyes. Acetone is water soluble and also quite a small molecule so it does get absorbed by your skin, but by the magic that is organic chemistry it won't do what it does to plastic or styrofoam - otherwise my nail art habit would be much less sustainable. @HerryTheHerp - If you don't mind my asking, when you had shingles where did you break out?
  6. p.s. - I feel moved to tell you on a serious note, at risk of dampening the compelling and contagious levity with which you infused your story, that you utterly floored me with this part: I've tried to get mad at her for this, and all I could do was hug her when I had to break the news to her. Somehow, I understood just what she was going through and it bonded us. I don't know if it will last, but I don't think I'll ever be angry at her. I don't ever want her to be angry at herself. I know that truly caring and kind-hearted men exist, but what an affirmation this is. I think my ladies on here will agree. That last sentence, especially, hit me like the knot-in-your-throat scene of a Sandra Bullock movie. It was like a big bear hug to anybody who's ever been angry at themselves for getting or giving herpes. Thank you for sharing your forgiveness. I know it gives me and many others a lot of hope. p.p.s - Who does work in kimonos and sitting indian-style? Only the world's biggest badasses. Those ankle blisters should clear up with ___cyclovir treatment too, and since HSV-2 is highly evolved to preferentially inhabit sensory nerves supplying the territories of skin we engage when we play the world's greatest contact sport, outbreaks anywhere else should be much less likely to reoccur. Keep those areas dry and wash your hands afterwards if you touch them. p.p.p.s - Are you saying that socks aren't good protection? I've been doing everything all wrong.
  7. Dear Harry's Roommate, Welcome to the neighborhood! We're so very glad to have you in our not-so-gated community and I think you're going to like it here. Our people may sometimes have loud and crazy house parties like the one you're describing...but we keeps it real. Harry sounds like the kind of house guest who says he needs your couch for 2 weeks max but you just know he means to stick around. Folks around here are used to accommodating extra roommates so he's totally cool to stay, but we know that since you're a nice guy you probably won't make him pay rent. I know you're not rolling out the red carpet or anything, but take it from this B in Apt 23 whose loser friend just moved in a few weeks ago - a little bit of well applied passive-aggressiveness here and there keeps the dishes out of the sink and the underwear off the floor. It was nice of him, though, to make his presence known instead of squatting in your basement unannounced. A great housewarming gift you can offer him is 1000 mg of valacyclovir twice daily for 10 days (or even 1000 mg famcyclovir every 12 hours for one day to really show you care). And although he got excited and made a big mess at his primary infection party, it's never too early to get back with some daily suppressive therapy to keep him tucked away in the windowless back room so that you can have friends over again. (Aggressive and early treatment of the first outbreak after the initial exposure can reduce the severity and frequency of future recurrences compared to delayed antiviral treatment. Although I absolutely believe that your body produces Chuck Norris's antibodies, even the best of them can't kick herpes where it hurts - in the DNA!) Good luck with Harry, and if you ever need anything from any of us we're just a few doors down. Cheers, dr h+
  8. Woah now y'all. This is a support community, and while it is comprised of very different and opinionated people among whom some civilized disagreement is healthy and breeds good discussion, there is no room for name-calling or ad hominem attacks. We don't do that here. Any one of us might be wrong sometimes but we should all expect respectful conversation from each other. Let's refocus this thread on sad_woman's story, and lay off on the victim-blaming and woman-blaming. I think everyone here can agree that all of us who have herpes have done enough self-punishment already, and reminders that accountability and responsibility are a two-way street are both self-evident and redundant. Regardless of whether the source partner was a man or a woman, if that person knowingly exposed someone else to any communicable condition without disclosing, he OR she should be more accountable. The fact that someone intentionally did not disclose herpes is common to all three stories here (sad_woman, Aimee, and tjones) - this is a shared anger, and while the desire to blame and seek revenge can last for decades, the ultimate purpose of all of this is our shared healing. It is natural and sometimes justified to blame a certain person, especially in the aforementioned cases in which there was intentional deception or sexual abuse. But it is an over-extension to indefinitely seek revenge on the entire opposite sex through our words and attitudes. @tjones, I understand you want to bring a man's perspective to a forum you perceive to be predominated by "women raging about crappy men", but with all due respect, it really is not appropriate to meet people's stories about specific men in their lives with blanket statements preferentially blaming women. And while you'll say the link you posted above about the difference between men and women was "tongue in cheek", it also does not suffice to jokingly write a woman off as "too complicated" or "over-reacting" if she is offended by something you write. A recent post about the difference between Empathy and Sympathy: http://herpeslife.com/herpes-forum/discussion/2068/empathy-versus-sympathy#Item_3 The punchline: Rarely, if ever, does an empathic response begin with "at least". At least it's not cancer. At least you didn't marry him. At least nobody died tragically and senselessly. That all might be true, but it doesn't make anything better for the person hearing it. What does help is sharing in that person's space. Sharing similar experiences, or telling our own stories, of both the initial pain and the eventual okay-ness of it all. I believe that's what both @Aimee and @tjones started out doing in response to this post. Yes, keeping herpes in perspective is important, but there is a fine line between that and dismissing someone's current pain as insignificant. Since we're on the topic of the difference between men and women, maybe we can discuss sad_woman's observations that women can sometimes have a more difficult experience dealing with herpes for societal reasons. While it's true that both women and men can have "predatory natures", it's commonly acknowledged that sexual assault of women is more common, and as in sad_woman's experience, an unequal power differential can (sometimes, of course not always) cause the woman to suffer disproportionate social consequences. Although we would all like to believe that sexism no longer exists, and although we are not here to bash one sex or the other, the fact remains that as long as there are social inequities, this issue and many others will ALSO be women's rights issues. And yes, more women (~20%) than men (~11%) have herpes for anatomical reasons - it was true in the 80's and it's true now. Men are more likely to transmit herpes to women (10% per year in a monogamous relationship with no protection or medication) than the other way around (4% per year). This is just a fact - it doesn't mean we should blame or fear the other sex for being more likely to either have or transmit herpes, respectively. It just means that men and women have to stand together to educate everyone, and support everyone going through this, instead of bickering across the line. Also, the fact that differences exist in how herpes or societal perceptions affect each sex does not in any way minimize the experience of men with herpes, or men who have been burned by women who did not disclose (so tjones, I'm not trying to discount your opinion. Because it is slightly less common for men to have herpes, and there are some social stigmas that may make it harder for men to feel comfortable sharing, there are fewer male voices on this forum. Your voice is valuable, and when civil, as valid as anyone else's. I would just like to respectfully urge to you support the storytellers over categorically defending the men in the stories.) Ultimately our job right now is to relate to and care for @sad_woman. Her feelings of unfairness and anger are feelings that we can all identify with. So let's go back to that. What are your stories about finding forgiveness for yourself or for the person you contracted herpes from?
  9. Rarely, if ever, does an empathic response begin with "at least"... Rarely can a response make something better. What makes something better is connection. So good! Thanks for this :)
  10. @tjones - Totally understand your anger. However, what you're proposing would, in practice, amount to litigating and taxing only the people who have a diagnosis of herpes from a physician, including the very people on this forum who know they have it and are taking steps to keep themselves healthy and protect others. Would that help anything? Consider that most of the people who transmit herpes are those that don't even know they carry it (80% of people with herpes are asymptomatic) - they would never be identified for a lawsuit and because they don't know to get treatment, aren't on medications that would be taxable. People who know they have herpes, practice disclosure and safe sex, and are on treatment to suppress viral outbreaks and shedding are far less likely to transmit it. (Also, the very idea of taxing medications is a breach of patient confidentiality because it would put information about what someone is taking and what diagnoses they have outside of a medical context.) Having herpes is not the problem. Having herpes and not purposefully disclosing it to a potential partner IS a problem. Having herpes and raping someone is so much bigger of a problem, and one in which the rape is magnitudes more damaging than the herpes (and is actually criminal). ---A revision: --- I didn't read the sarcasm in your tone because while it's true that there are many frivolous lawsuits bogging down our legal system, @Aimee's case is the furthest thing from such a suit. She's not "playing the victim", she is a victim. She's not trying to play the system to get everything she can from this man, she's using the courts less than she potentially could to get only what she deserves, and no more. There are sometimes subtle distinctions which make the difference between a well-placed joke and a tone-deaf non sequitur.
  11. That's a little misleading. From the thread you linked, the person who wrote that in a comment meant that "bodily fluids do not carry the [HSV] virus" in the way that HIV can be transferred through blood, semen, vaginal fluid, pre-ejaculate, or breast milk. HOWEVER because HSV is spread through skin-to-skin contact, and mucous membranes such as those that exist in and around the genitalia create a more supportive environment for viral transmission, it IS possible for one female to transmit HSV to another "through" vaginal fluid by grinding. You've made several posts about this already so I know this is something you're really concerned about - but just because it is possible for you to have gotten herpes from this person doesn't mean that you did. Your blood test results are inconclusive, and although they don't rule out HSV, they should lead you to consider other possible causes for your symptoms. she disclosed how she studied about herpes she knew more about it than me, but shes never been tested Saying she has studied herpes is not the same thing as disclosing herpes, and knowing more about it than you do means nothing if she has never been tested. Honestly, one way to set your mind at ease about whether or not it could be HSV-1 or -2 is to ask your partner to just get tested already. I know you've said she'd "never see a doctor" but if you are this conflicted about the possibility of this being herpes she should care enough to not only consider your feelings but also take care of herself and her other partners that she may be unknowingly exposing. Viral shedding just means that the virus, which lives in the sensory nerves that help that part of your skin feel touch, heat, pain, etc, is making its way to your skin and can be transmitted through contact. Shedding usually refers to when the viral DNA is replicating at a low enough level to be asymptomatic (meaning that you wouldn't see genital sores), but at a high enough level to transmit to another person.
  12. Hi adventurelovelife, First of all, I've read your other post and responses to various threads, and want to say I really appreciate how your amazing attitude and positivity comes through in your writing, and despite the severity of your symptoms. I really feel for you - outbreaks every month sounds so frustrating, and yes, it would be awesome to get this under control so you can feel at ease about pursuing a relationship. Valacyclovir (Valtrex) is a prodrug of acyclovir, which means that enzymes that your own body produces will convert it to acyclovir. It therefore acts the same way as acyclovir but has better bioavailability - meaning that less of it gets digested/metabolized or degraded and excreted in urine, and that a person can take a lower dose or at a lower frequency for the same effectiveness. If Valtrex has never worked for you, acyclovir is unlikely to produce different results for this reason, but famcyclovir has a slightly different mechanism of action, and that might be just enough to make a difference for you! Famcyclovir (trade name Famvir, made by Novartis) is a prodrug of pencyclovir, again with better bioavailability when taken orally. It has not been as well studied, but I don't think it would hurt to ask for it to treat your next outbreak and see if it makes a difference in the severity or length of the outbreak. Although evidence is inconclusive and varied as far as I can tell, famcyclovir seems to be more commonly prescribed to treat recurrent HSV-2 in immune-compromised patients who might have slight differences in the proteins their particular herpesvirus codes for. One study also suggests that valacyclovir is more effective at suppressing latent shedding, but famcyclovir is better at reducing future recurrences when used during initial treatment (although much of this may be speculative). Perhaps your body is immunocompromised for whatever reason, or that there is a slight difference in the DNA replication machinery that the herpesvirus in your body produces. Famcyclovir is ultimately reduced to the active form penciclovir-triphosphate, as opposed to the slightly structurally different aciclovir-triphosphate that Valacyclovir becomes. Both penciclovir-3P and aciclovir-3P act to inhibit the herpes virus's ability to replicate it's DNA by several mechanisms: 1) competitively taking up an active site on the viral DNA polymerase protein, thereby knocking out deoxyguanosine triphosphate 2) becoming incorporated by the DNA polymerase into the growing new DNA strand, which stops the ability to add more nucleotides onto it, or 3) binding to the viral DNA polymerase itself and thereby blocking/deactivating it. This may be a little too much detail (though if you're interested I could try to explain it better or send links), but the main point is that the active end product of famcyclovir is chemically different than that of valacyclovir. I've never tried famcyclovir but would probably ask for it if/when I have another outbreak myself. It is usually prescribed for use over a shorter interval (as opposed to the standard 10 day Valtrex regimen), and if you ask your doctor about it he/she can work out an appropriate dose in consideration of any other health factors like your kidney function, other active medical conditions, etc. I'd also be really interested to hear if anyone has used famcyclovir and can give a comparison! Cutting out coffee and other arginine-high foods as you've been doing may help to inhibit herpes DNA replication and prevent outbreaks, and along this vein lysine amino acid or L-lysine supplements may further help to block arginine. I don't know much about this and believe clinical trial results have been mixed. The NIH rates propolis, a resinous botanical remedy, as "possibly effective" in treating cold sores and genital herpes. I know even less about this but apparently there are 3% propolis ointments (Herstat or ColdSore-Fx) that may help to heal lesions faster. I hope this helps, and I hope your symptoms let up and you're able to find something that works better for you! Best of luck and warm thoughts to you!
  13. Aimee, I'm glad that you have looked into your legal options. I'm also glad that no matter how you choose to deal it, the power of the law is in your hands. It's not that what he transmitted to you is all that bad or destructive in a grand sense (the herpes, I mean). You're right that it's the intent to do what he perceived as substantial harm (enough harm, he believed, to change your actions and cause you to stay with him when you otherwise wouldn't) that, in addition to the larger issue of WTF, he raped you - that is the truly despicable part. It is totally your perogative to consider financial and family reasons for not serving him what he deserves in court. You are within bounds to even show him mercy for the sake of mercy - because you are the bigger person, and you are in a position to spare him suffering even when he tried to inflict it on you. He must know that too. A civil suit could make him pay for the crime he committed in ways that are actually useful to you, so it's good that you are weighing all your options. Again, good luck with everything. Although legal remediation probably won't fix all the shit he put you through, it can bring some satisfaction, and you surely deserve that and much more.
  14. Aimee, It broke my heart to read this and I can't imagine what you're going through. I'm so sorry that your ex took advantage of you like this. One thing - I cant say he raped me because i dont remember any of it, so i cant say i didnt agree. But REALLY??? Who does that? You CAN say that he raped you, and if you did you would be absolutely right. In fact especially given that you can't remember anything, you were not able to give valid consent. That makes what he did sexual assault. By definition. Period. Now, whether you pursue legal action is a personal choice that you would have to make in consideration of whether it would cause you more pain to do so, and I'm sure many other factors that I can't begin to fathom. There are options, however, as well as resources to help you if this is the route that you feel would bring you the most peace. As WCSDancer said, the fact that he knowingly and WILLFULLY exposed you to potential harm with malicious intent (while raping you) is likely strong grounds for a lawsuit IF you were to chose to bring it on his ass in court. I can't begin to give you legal advice, but as far as giving support for coping with herpes and your emotional needs in general - all of us are here for you. It is so understandable for you to be angry at him - in fact, it is the only rational response. He was weak and small and tried to control you by taking away your choice to have sex, and your choice about being exposed to herpes (which, by the way, he can NEVER control you with because you are too strong to stay with him out of fear and insecurity - you will find someone WAY better regardless of herpes!!). But what also hurts is that your anger is hurting yourself more than it is hurting him. In the time you spend in pain about this, he is probably just sitting on the couch having a beer and not giving it a thought. Does this mean you have forgive him right now? Of course not! There will be a time for that when you are ready - and that means FIRST forgiving yourself and letting go of any guilt you might have over being infected. Adrial put it best in another post: There is a certain amount of anger that is healthy. Once anger turns to hate, it becomes unhealthy for us, not the person being hated. Being angry with someone else for what they did to us is like ingesting poison and expecting the other person to die. It just doesn't work over the long-term. So how to get over it without killing someone? Forgiveness...And that is not to minimize what this guy has done. This is not to say that what he did is okay in any way. And now that you have herpes, you can't change that part. It is now a part of you. It doesn't define you, however, unless you let it. The sooner you can learn to love yourself with herpes and be happy, the sooner you will move on... That's the biggest revenge you can possibly take on him. To move on and be happy. As far as his plan for entrapping you into staying with him by making you feel unworthy of real, honest, and uplifting love... Wow. You are going to show him. You are going to find someone who loves you by making both of you better, not by clutching on and pulling you down with him. Someone who gives love to and accepts both you and himself, instead of someone who only tries to take, and who hates himself too much to be capable of true caring for another person. Although it seems impossible now to ever be at peace with the pain that this selfish man has caused you, it WILL make you stronger in spite of it all. You WILL overcome, and discover how even more beautiful and worthwhile you are as a person. All my love to you Aimee.
  15. Hey lossofwords, I'm glad that you have been seeing your doctor for the rashes on your arms and legs as well as for your genital outbreak. If you had blisters on your arms and legs, hopefully those were swabbed too. The best thing to do now is breathe and just wait for your results to come back. One possibility is that the rashes on other parts of your skin are due to shingles. Another name for shingles is Herpes Zoster - it's in the same family of viruses as HSV-1 and HSV-2. It's caused by the varicella virus, which is the same herpesvirus that causes childhood chickenpox. So if you say that what you have looks like chickenpox, shingles would be one possible diagnosis to keep in mind (though I'm sure your physician has already thought of this). The Valtrex you are already on for your genital herpes should actually also be effective for treating the rashes on your arms and legs, because just as the different forms of the herpes virus are related, so are the drugs that treat them. Some questions for you to consider in looking at your rash: 1) When did you first notice the rashes on your arms and legs? How long have you had them/did you have them? Do they come and go? 2) Do the rashes happen on both sides of your body or only on the left or right side? 3) What do the rashes look like? Do they blister first in what looks like little fluid bubbles, and then crust over or dry up? 4) Does it look like there is a clear line dividing the area of the rash and unaffected skin? But Adrial is definitely right in saying that the very best thing to do right now, and which you are already doing, is to show your doctor everything and let him/her figure out a definitive diagnosis and treatment plan. Good luck, and chin up! The good thing is that you are mindful about the symptoms you're experiencing, you're in good hands, and even the worst case is very treatable. Everything is going to be alright lossofwords - hang in there!
  16. Hi blackbird, No need to panic :) I was recently diagnosed too, and also had a small blister on the side of my finger for a few days. These could be little blisters caused by handling the primary site of your herpes outbreaks, but they typically aren't anything to worry about. As WCSDancer said, herpes doesn't like to set up shop in areas of the body that the virus is not evolved to take up residence in (which are primarily the genitals or the mouth). Although blisters can appear on hands (more commonly in health professionals who may be exposed to a lot of different herpes infections, or people with herpes who have somewhat weakened immune systems for whatever reason), these usually will not reoccur because the virus is probably causing local irritation of the skin, and won't infect the sensory nerves supplying the area. Of course very rarely herpes can reoccur in the hands, but in general the level of shedding and incidence of outbreaks is significantly lower than that of herpes in mucosal regions of the body. Your hands are comparatively very dry. I totally agree with what WCSDancer suggested - which is covering the affected areas of your hands and keeping them clean, especially if you like to pick at them unconsciously - and additionally, be sure to wash your hands afterwards if you feel the need to touch an active outbreak elsewhere on your body (or use a glove - or just don't mess with your sores :/ I know this is hard and I am the same way about wanting to investigate, but a blister is a blister is a blister and poking it won't help!). This is especially true if you often have open hangnails. Although herpes whitlow is much less likely to reoccur and wouldn't be appreciably contagious especially if there aren't blisters, you don't want to expose any points of entry such as broken skin on your fingers. If the blisters are really disruptive and worrisome to you, you could get them cultured. Your physician would "unroof", ie pop the blisters and take a culture swab just as WCSDancer said. If you are on suppressive Valtrex that should be enough to get the hand blisters under control. Otherwise you can get a refill and take the recommended dose (probably half of what you've been taking or less) to take care of it - you wouldn't necessarily have to be seen again. Hope this helps!
  17. Hi PlzHelpMe, I know it can be frustrating to explain lab results when you don't know what the names and numbers mean. If you're able to post a picture or a screenshot that could help, but it sounds like all of your physicians are in agreement that you don't have enough HSV-1 or HSV-2 antibodies to be considered "positive" for either, and that your blood test results wouldn't change from negative to positive if you retested now. I know it's not very satisfying to hear given that you still have symptoms, but try to put HSV-1 and HSV-2 out of your mind for now. There can be variations in the blood test numbers for unknown reasons, but they don't really indicate anything clinically - meaning it doesn't change your treatment options. Also, because you've never had blisters or ulcers, there's no way you can get a more sensitive test (there aren't any active fluid sores to culture). Going to the ER is not a good option because they wouldn't tell you anything different, would probably be even less encouraging, and certainly wouldn't admit you. If you have had bad experiences with your primary care physician and your OB/GYN, you could try Planned Parenthood for the next time you decide to get tested (and I agree that this shouldn't be necessary for another 4 weeks at the very least). I think there is something to your mother's guess, and shingles (which is how the chickenpox virus expresses itself in adults) is what I thought at first too when you mentioned a rash on the backs of your arms. I explained it in more detail in a comment on your post a while back (http://herpeslife.com/herpes-forum/discussion/comment/7114#Comment_7114) but basically, shingles is caused by Herpes Zoster. It is related to HSV-1 and -2 in that it is in the same FAMILY of viruses. That means that it can present with somewhat similar symptoms as other herpes viruses. I'm happy to give you more info about shingles if you want but for now here are a few links: Pictures of what shingles can look like - http://www.webmd.com/skin-problems-and-treatments/shingles/ss/slideshow-shingles-pictures The Mayo Clinic on shingles symptoms - http://www.mayoclinic.org/shingles/symptoms.html Drugs to treat shingles are the same as for HSV-1 and -2 (the acyclovir family of meds, because it's the same herpes family of viruses) - http://www.mayoclinic.org/shingles/treatment-and-drugs.html Some questions for you about the rash: 1) Did you tell your doctors about/show them the rashes on the backs of your arms? 2) Do the rashes happen on both sides of your body or only on the left or right arm? 3) What do the rashes look like? Do they blister first in what looks like little fluid bubbles, and then crust over or dry up? 4) Does it look like there is a clear line dividing the area of the rash and unaffected skin? 5) You said that " the 10 day acyclovir is what brought the symptoms on " - can you clarify this? Did the acyclovir help the rash at all? 6) Does the rash come and go? How long have you had it?
  18. Hi PlzHelpMe, Sorry it's taken me a few days to respond, I've been trying to look some things up based on what you've said and get some clarification myself on the blood test. A few things still confuse me: 1) like I said one doctor tells me I had herpes but unsure where and which one because my test came back 1.55 index but hsv 1 and 2 negative This doesn't make sense to me because the IgG result should have corresponded with a positive result for either HSV-1 or HSV-2 because that's what the assay tests for. An index of 1.55 would not be interpreted as a negative result. When your doctor said that you had herpes after that test, how did he/she explain to you how that diagnosis was made? When you were on acyclovir after that, did it help your symptoms? 2) I read back through your previous posts and you mention "getting real sick" and "breaking out on the back of your arms and down below" and feeling like your mouth itches and your buttocks burn, and "Pain, tingling, burning, itching muscle pains headaches", but still not being sure if it's in the genitals or the mouth. When you say you get sick, what does that mean? Is it like having the flu? Have you ever been to see a doctor during the time you were experiencing these symptoms? Do you have/have you ever had blisters or sores near your mouth or around your genitals (were they fluid-filled? can you describe them?) If yes to both, have you ever had one of the blisters cultured? (The doctor would have opened one of the fluid filled sores and swabbed it with cotton). A note about IgG and IgM assays, and the difference between them: WCSDancer was absolutely correct in a previous post that IgM results are less clinically useful than IgG results because the level of IgM antibodies can vary widely. They are like your body's first responders, and get produced quickly upon first exposure to an infection, or during reactivation of a virus, but their levels drop afterwards. Also IgM testing is not reliably type specific, so it can't distinguish between HSV-1 or -2. The reference range for IgM (Types 1 and 2) are: <10 --> Negative >=10 --> Positive IgG tests are type specific, and use which recombinant type specific antigen (glycoprotein G) is present to distinguish between HSV-1 and -2. IgG antibodies take longer for your body to produce, but once they are made they typically persist. So if you are worried about your index value increasing from 0.37 to 0.90 you could, if you wanted, get retested in 2-4 weeks. However, depending on your current symptoms (and I am not sure what those are, nor do I have I taken your history or physical so this is NOT direct medical advice), it may not be necessary to keep getting tested. You are on the low end of a range the test considers an equivocal result. (When you say your index was 0.90, was that for the HSV-1 or HSV-2 IgG? The two would probably yield different values). The reference ranges for IgG (Types 1 OR 2) are: <0.90 --> Negative 0.90 to 1.10 --> Equivocal >1.10 --> Positive At this point I would say treat your symptoms and go from there. From what I can tell, not being entirely clear on what your symptoms are (or when they began, how frequently they occur, whether they reoccur, etc), you've had some negative or ambiguous serologic results for herpes, and although herpes probably can't be ruled out at this point, I definitely agree with WCSDancer that there could be other causes for your symptoms that might be mimicking herpes. Some other conditions that came up in my searches include chancroid, which is bacterial, or Behcet's disease, which is an inflammatory disorder that would present with symptoms elsewhere on your body in addition to mouth and genital ulcers. (You mentioned previously some "break outs" on the backs of your arms... are you still having those and what are they like?) Again, this is definitely not meant to be medical advice, and certainly not meant to scare you - but if you would like to PM me I can link you to more info. Honestly I would do what you're doing and try to deal with the emotional effects that all this is having on you. And we are here to help with that.
  19. simplyme, I can totally see myself in what you wrote too, and am loving everything that has been said on this thread. It made me think of that line from The Perks of Being a Wallflower that I think Adrial has quoted a few times around the site, and that is, "we accept the love we think we deserve". We feel even more discouraged when people compliment us because they are offering us love that we haven't given ourselves yet. We perceive our secrets as darker and more shameful than anyone can ever know...and if they were to find out, they would suddenly somehow no longer mean the nice things they said about our outfit that day or our job performance or our personality. But EVERYONE has secrets, and certainly not just about herpes. The person giving the compliment is probably ashamed about something too. He or she wants acceptance for that thing, but might be too afraid of judgement from you to say so. We all feel vulnerable for one reason or another, and showing that vulnerability is so hard that it's often easier to keep it in at the cost of experiencing it alone. This forum is so liberating because we have a chance to experience both feeling alone with H and opening up about it together. And when we are ready we'll be able to let in the love that another person gives to us and really know that we deserve it, and also give love back in hopes that that person believes they deserve it too. You're beautiful, all of you!! <3
  20. Hi elle789, Welcome to the forum, and THANK YOU for your beautiful and uplifting post! You really captured how transformative a herpes diagnosis can be in a lot of ways, not least of which because it makes us re-evaluate how lucky or unlucky we feel in life, and reinterpret our struggles as the steps we take towards self-acceptance. Just as everyone deserves happiness, everyone hurts sometimes. Thanks for the reminder to embrace every part of life, including the pain insofar as experiencing it helps us accept our imperfections and appreciate the good things more. I really enjoyed reading this, and hope to hear more from you!
  21. Hey emmz, WCSDancer gave some really awesome advice as usual, and I wanted to reiterate how important it is to get started on daily suppressants as soon as possible (and not just as you near the birth of your baby). A lot of us are on daily antivirals, and it sounds like you've used them for your 3 previous OBs. If you haven't had any side effects taking the acyclovir family of drugs (also valacyclovir or famcyclovir) to this point, you should feel safe taking them for the remainder of your pregnancy and afterwards. Acyclovir very specifically targets viral proteins and DNA, so most people do very well on it daily for many years, with no side effects and no evident long term harm. It also has never been shown to have adverse effects on developing fetuses, and you can work with your doctor to get the dosing right to suppress any more outbreaks, as well as work out a birth plan you feel comfortable with. Congratulations on the new addition to your life and family, and good luck with it all! I'm sure that in a few short weeks you and your partner both will have so much more on your minds - and so much joy - that this little skin condition will seem like nothing! Warmly, dr h+
  22. This makes me smile so much. Reading stories like this is a huge comfort to those of us who haven't yet had occasion to be in a disclosure situation, so thanks for sharing! Enjoy the new relationship :)
  23. Ovechkin8, Welcome here and much love to you! I think that exactly all of us can relate to the feelings of anxiety and overwhelmed-ness that you described in your first post, and to echo the wonderfully articulate @Aerial2013, that is so understandable and nothing to apologize for. You are really wise to use the support systems you have available (your mom, sister, and girlfriend all sound amazing and it's so good that you can be open with them!), to seek out more support here, and to focus on the actionable things (like taking valacyclovir, doing counseling, and building that bike!) instead of the nebulous worries. I know how frustrating it is to be sick and not really sure what's going on. However, you've clearly done your research and sound like you have a really strong awareness of what prodrome symptoms feel like, when you should avoid traditional genital to genital sex (and get creative!), and also what your emotional state is at any given point. These are all things that tell me that you're going to have a really good outcome with managing this well, so take heart! I don't have all that many insights about your test results beyond what has already been mentioned above and I am not qualified to give a professional opinion, but I agree with @WCSDancer2010 and Aerial that despite some conflicting test results, there are more pertinent positive signs pointing to HSV-1 than not, and HSV-2 seems unlikely. That your 11/19 OB responded well to antiviral treatment, that your initial symptoms were more severe (painful urination and a cluster of blisters instead of just two), that your culture results were positive for HSV-1, and that your 11/22 IgG results, though negative, still showed higher levels of antibodies against HSV-1 than those against HSV-2, all suggest that you have HSV-1 and that you do not have HSV-2. As far as the accuracy of different tests is concerned: WCSDancer is totally correct in that real-time HSV PCR assays have the highest sensitivity (true-positive result rate) of any test. Culture swabs are better when the lesion is fluid filled, and IgG blood tests should have a lower false-negative rate when they are done after more time has passed since initial infection because that gives more time for the body to produce antibodies. IgG results are pretty accurate: I'm reading a source that says it has a sensitivity of between 80-98% and a specificity of 96%. However, there certainly can be some variability in this test's accuracy depending on when the test is done, and probably even between blood samples. This is one of the reasons that so far, HSV screening is not regularly a part of STI testing (though should be!) - that the false positive rate would cause too much undue worry when considered over the whole population. What is known is that type-specific antibodies to HSV develop during the the first several weeks after primary infection and persist indefinitely at some level. That's why the second test, although it was within the negative reference range, doesn't rule against a diagnosis of HSV-1 - there was still a slightly elevated antibody signal. I want to do more research into what the reference ranges are for what value can give a positive or negative result, and how much individual variation there is in antibody level. If I find anything interesting I'll post again. It's true that HSV-1 won't present recurrences as much as HSV-2 does, but it's definitely not unusual to still have more frequent genital OBs with HSV-1 in the first year or so after infection (after that there's usually a steep drop-off in OB incidence). Take reassurance in the fact that these will become less frequent going forward, and that one study has given some support to the theory that HSV-1 antibodies have a protective effect against future HSV-2 infection (although it's definitely still possible). Finally, I don't think herpetic whitlow is all that likely as long as you aren't continuously scratching and breaking the skin/lesions during an OB. These viruses are evolved to strongly prefer their original site of infection, and whitlow is actually more common in health care workers who have contact with herpes in many different people (it's considered an occupational hazard). But most of what I said above is just me trying to investigate questions that your case brought up. What I REALLY want to say to you is that you should be encouraged no matter what the lab values are. Although it may not feel like it, you are in a very good position to manage this very successfully because you are an informed patient, and most of all because you are able to talk about what you are going through with those who are close to you. As some of the materials Adrial provides say, most of the suffering caused by a herpes diagnosis is due to the psychological effects, not the physical signs. I hope that some of this clinical information has helped to set your mind at ease, because having a more definitive diagnosis can be comforting in a way too. But taking care of your mental health and well-being, just like you are doing right now, is by far the most helpful and actionable step you can take. Thank you for sharing your experience, and remember you are loved for your openness, honesty, and humanity.
  24. Thanks everyone for your responses! @Peachyogurtisawesome - I'm dying of laughter right now... seriously I might pass out. Feel free to call me whatever you wish, I'll go by pretty much anything :)) I feel I should also take this moment to qualify to everyone that I am ----NOT YET A DOCTOR---- but created that username because 1) by the time I am a doctor, I will still have herpes and 2) just as @WCSDancer2010 commented, STIs are equal opportunity, and I wanted people reading whatever I post to remember that even your doctor may be going through the exact same thing that you are. He or she won't tell you in clinic, but the same insecurities, the same desire to be liked, and yes - the same diseases - are often there. I think people can feel uncomfortable when they go to the doctor because everything is so sterile and they're getting asked about their sexual practices by somebody with a really poorly-fitting white coat on, but really we should all remember once in a while that doctors are people who deal with the same issues we all deal with. They didn't go into practice to judge you, and the point of a good doctor-patient relationship is so you can feel at ease disclosing sometimes embarrassing information that can make a big difference in their ability to diagnose and treat you correctly. I'm here like you all are to be positive and present for others and ourselves. Sometimes I might post some general science information (definitely never person-specific) that I think everyone might find interesting or helpful, and while I do my research, there's no substitute for getting a professional medical opinion. So again, --I'm not a doctor!-- but please, --talk to your doctor!-- if anything ever doesn't feel right (everybody knows their own body best, and the best doctors listen :) ). also @WCSDancer2010 - I'd love to get involved in some of those projects if there's any way I can contribute! (And thank you for your remarks about trust... you're so right! Thanks for helping me to understand my feelings about myself a little better and to shape them more forgivingly.) @Reality and @tNd - Thank you both so much for your kind words! Your comments were uplifting, and just one day later I am feeling more optimistic. There's a lot about myself I want to change, but thank you for reminding me to be gentle in the process and grateful that I am well enough to take each new day as a chance to choose happiness.
  25. WCSDancer2010, Thanks so much for welcoming me! I've read a lot of what you've posted too, and think you are just wonderful. I have an exam tomorrow but will probably work on a longer post afterwards to translate in general terms some of the more technical things I've been reading and think might be interesting to everyone. I'm a strong believer that knowledge is freeing and am happy that I may be able to contribute to the conversation in a meaningful way. I included that image because PlzHelpMe mentioned breaking out on the back of her arms, and it sounds like from this and previous posts that there may be some ambiguity in whether this is HSV at all. The image is of shingles, also known as herpes zoster. There are five species of Herpesviridae (the family name of highly related DNA viruses) that are considered common in humans: HSV-1 (orolabial herpies), HSV-2 (genital herpes), varicella zoster virus (chickenpox and shingles/Herpes Zoster), Epstein-Barr virus (which causes mononucleosis, aka Mono), and cytomegalovirus (primarily affects salivary glands, is extremely dangerous to immunocompromised people, and has a prevalence of about 40% worldwide). What all viruses in this family have in common is that they have the ability to remain latent in the body by persisting in specific structures, and then recur later on as an active form when the virus again undergoes rapid levels of replication using the host's cellular machinery (as well as shed periodically or constantly at a subclinical level - this means without symptoms). The word "herpes" comes from the Greek "herpein", which means "to creep" and refers to the ability of the virus to live silently in the body during dormant stages of its life cycle. From here, HSV and VZV/chickenbox/shingles have something further in common: these 3 viruses have evolved to inhabit the nervous system (specifically the spinal cord and, in the case of HSV-1, the trigeminal ganglion...but I can get into all that later and with pictures O_o). Let's just focus on HSV-2, genital HSV-1, and VZV for the purposes of this discussion. HSV infection happens when the virus makes a skin-to-skin jump (assisted by mucosal membranes, aka the slippery parts, or by microlesions in the skin). From there, it targets tiny cutaneous nerves that bring sensation (touch, heat, pain, etc) from the surface of the skin back to your spinal cord so that your body can know what you are feeling or if you are hurt. Because those signals travel back towards your spinal cord, you can imagine how a virus infecting one of these neurons (aka nerve cells, which can be really long) might make it all the way back to the sensory ganglia near your spinal cord (these are called dorsal root ganglia and they are structures at each spinal cord level). There, they connect to neurons in the spinal cord itself, and those cells then conduct signals to higher order structures (aka so your brain can tell you to move away from heat). Herpes viruses, however, typically stay at the level of the spinal cord that sends out the sensory nerve supplying the part of the skin that was first infected. That is why recurrences usually happen at exactly the same spot, but with less severity, where the primary infection was. The virus will remain, dormant and therefore less responsive to acyclovir class drugs (which can only act to halt actively replicating viral DNA), until something triggers it to start dividing again. When this happens, the infection travels retrograde back down the sensory nerve (starting from near the spinal cord to the near the skin), where it makes contact with and irritates tissues and cells of the skin. Phew! Still with me? Again, I'm hoping to make a post using better language, analogies, and illustrations later on. There's one last part to this very long answer to your question. Herpes zoster (aka varicella aka chickenpox aka adult shingles) is very similar to the HSV pair of viruses. Instead of being sexually transmitted, most people contract their primary infection as kids from other children, and the symptoms, while itchy and annoying, are very temporary and not that severe. This usually immunizes people against further acute reactions later on in life, although the virus remains in the nervous system forever and is dormant. The reason for this immunizing effect is that the chickenpox episode causes the body to create antibodies (immune cells) to specifically fight against the virus, just like a vaccine would. The bad news is that in about 10-20% of cases the VZV virus reactivates later in life and causes a more severe presentation known as shingles. It is also treatable with the same antivirals that we take for HSV, and this kind of recurrence is more common in immunocompromised patients like those with HIV/AIDS. Also, the later in life a person contracts VZV, the more acute the symptoms are likely to be because of the lack of vaccine effect. This is why doctors ask if a person had chickenpox as a child. Finally, the reason I picked the picture from earlier is that shingles can reoccur over a much larger area than HSV usually does (kids have chickenpox all over, so the virus lives in potentially all sensory ganglia along the spinal cord). During clinical presentations of shingles, usually only one or a few of these ganglia have reactivated virus. Therefore, symptoms will only show up within specific margins defined by regions of the skin that have sensory nerves sending fibers to only those spinal cord levels. These levels or territories are called DERMATOMES and are mapped out on the body: http://wardwiki.com/images/thumb/6/6c/Dermatomes.jpg/850px-Dermatomes.jpg That is why in the picture there is such a clear margin between the blistered skin and the unaffected skin, and also why I asked if this was the case on the backs of PHM's arms.
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