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Medical Forum / Diseases and Disorders / Herpes / December 2003Recently diagnosed feeling very desperate. please help.
Hi all. Since finding out I have this I have been on the internet constantly looking for answers. I have found some very good sites and have been thankful for all the information that is out there. The problem is that I cant seem to find out all the information I am looking for. This has just not been easy for me. I found out I have the big H in august. When I found out I thought my world had ended and I truely wanted to die. I went through days of deep depression. When I told my fiance that I had it I cried and cried. Something she had very rearely seen me do before. Then came the pain. The pain I felt was such that I layed in bed praying for sleep so I wouldnt feel it anymore. It was so bad that I could not think of anything else but that. I couldnt work, drive, talk to anyone without thinking about it. I didnt have any visible sores but my scrotum and the inside of my thighs just burned. I also had a constant pain in my lower buttocks like if I had been working out. I went back to my doctor and he refered me to a urologist. He was very optomistic. Ahh, too optomistic. Smilling laughing and telling me this was nothing to worry about, it's so common, it wont be so bad, take two and call me in the morning. Ok not the last part but it was just no big deal to him. In my head I wanted to scream. In my head I wanted to tell him that it was a big deal and that I wanted to die. But I didnt. I took the prescription for valtrex and went to the drug store. I took the valtrex for a month. The pain never really went away until about 3 weeks later. I felt some relief but before I could recoop the pain returned with a vengeance. I went back to the doctor. During this time I asked my fiance to get herself tested. She did. She came back positive. I was devastated because I think I gave it to her. You see, the last person I had sex with before I came into my current relationship called me & told me she had it. That is why I had tested myself in the first place. I guess it is possible that my fiance gave it to me and then I gave it to her. (there was a point in the very beginning that the 2 sex partners overlapped) but I doubt it. Anyways, I told him I was really sad that she had it and that I thought I needed help dealing with this because I wasnt dealing with it well. He laughed and said, no lie, "well, now you have something that your both bringing into the marrige". I wanted to jump over the desk and strangle him for saying that. I love my fiance more than life itself and this man was practically saying "oh well" to the fact that she had something that could cause her pain. I continued to take valtrex and about 3 weeks later the pain finally went away. 4 days of happiness and relief followed. I went diving and laughed with my friends and fiance again. I felt almost good again. Now the pain is back. This is the third "outbreak"? in 2 months going on 3. This time around the pain was not AS bad but I now see 2 tiny bumps on the tip of my penis. I feel generally unwell. My throat hurts. I feel burning on the lower part of my buttocks and my thighs again. Today I tried the cream I had to tell my doctor to prescribe to me. acyclovir cream? Since there are no real sores I kind of just rubbed it in on the areas that I am feeling pain in. It kind of burned for a few minutes. No it's really burning. I am so sorry for going on like this. I feel like I need to just talk to someone and this is the only way I can do it. As I'm writting this I am starting to cry, again. i feel so alone even though my fiance says she is with me no matter what. We have decided not to really think about who gave it to whom and just go on with life if we can. She has not had any symptoms and I am so happy about that but we'll see if she feel the same way if she starts to feel pain. We havent had sex during this whole time and I feel like I am going to lose her because we are not intimate. She told me today that she feel I am pushing her aside and that she no longer feels sexual towards me becasue she's afraid and it's partly my fault. Can I ask everyone a few questions? 1) Has anyone out there ever felt this much pain or had this many outbreacks even on valtrex. (by the way, I switched to famvir this week to see if that would help and started taking lysine pills and vitamins and garlic.) 2) Anyone else had these symptoms (sore throat, itchy, pain in the buttocks, etc.) 3) Im scared to shower because I'm scared that the virus will run down my leg and infect my feet or something. 4) Is drying yourself with a towel going to spread the virus all over my body. 5) If my fiance already has the same type and we have sex and she doesnt have symptoms will I make her have symptoms by having sex or shoudl I make love to her with my shorts on and a condom? 6)If anyone is in the new york area can you recommend a place to go to for help dealing with this and maybe a doctor who is knowligable with this disease? I really want to thank anyone who has actually read this whole rambling post. I cannot tell you how much I would appreciate any advise. Maybe someone out there can suggest something that will take this pain away and make me feel whole again. Hi Rojer, First I want to say that pretty much EVERYONE who is diagnosed with herpes has gone through the exact same thing you are going through. It may sound trite, but it really is the truth - here it is: It gets better. Life goes on. You can be happy again. Your fiance is right. Don't bother with who gave what to whom. Those answers may never come. Did you both test for the same type? In other words, do you both have type 2 or 1? It is very possible that your fiance has had it for years and never had an outbreak yet passed it to you. So, worrying about it is wasted time. For pain relief - have you tried over the counter meds like aspirin and ibuprofin. You'd be amazed at how much they help. I don't take the antivirals so I can't answer your questions there. But keep reading for my responses to your other questions: > 1) Has anyone out there ever felt this much pain or had this many > outbreacks even on valtrex. (by the way, I switched to famvir this > week to see if that would help and started taking lysine pills and > vitamins and garlic.) As I mentioned above, I don't take the meds. However, I can give you other, general advice. The body needs time to learn how to deal with the virus. Here's the tricky part: the more depressed you become about it, the more outbreaks you'll have. The key is to have a healthy immune system and depression will depress the immune system. So, even though you are going through some really rotten things and pain right now, it is all a process that is getting your body ready to fight, fight, fight. You need to concentrate on building your immune system by making sure you're eating a healthy diet (cut out the crap), getting plenty of rest and exercise. > 2) Anyone else had these symptoms (sore throat, itchy, pain in the > buttocks, etc.) Sure. > 3) Im scared to shower because I'm scared that the virus will run down > my leg and infect my feet or something. Hot water and soap kill the virus. So, don't worry about that! It's pretty difficult to reinfect yourself, by the way. Just use basic hygiene knowledge and you should be fine. > 4) Is drying yourself with a towel going to spread the virus all over > my body. No. > 5) If my fiance already has the same type and we have sex and she > doesnt have symptoms will I make her have symptoms by having sex or > shoudl I make love to her with my shorts on and a condom? Make sure you guys have the same type, first. And then it is all about triggers. You can not reinfect her. It's like being pregnant - you either are or you aren't. You can't get pregnant again as long as you are already pregnant. Silly, I know, but it works. Sex, however, is a trigger for many women. It has to do with friction. Make sure you use lubricant. Of course, keep in mind that if she has never had an outbreak, then you don't really know where her herpes is located: genitally or orally. Also, if she's ever had a cold sore, then she'll test positive for type 1 anyway. > 6)If anyone is in the new york area can you recommend a place to go to > for help dealing with this and maybe a doctor who is knowligable with > this disease? I believe Angela has some information on that. There are some great help groups around. > I really want to thank anyone who has actually read this whole > rambling post. I cannot tell you how much I would appreciate any > advise. Maybe someone out there can suggest something that will take > this pain away and make me feel whole again. Just keep listing your questions and we'll answer them. ar > Hi Rojer, > [quoted text clipped - 76 lines] > > ar Thanks for the reply ar. I see your name often on these posts. God to see there are people out there willing to help. You said angela may have information I could use? I'll try to get a hold of her and ask her. I wanted to ask you something else if you dont mind ar. How dangerous is say putting cream on your legs if I feel burning there but there are no sores or bumps present? I mean is there a risk of getting it further down my legs if I kind of lightly rub lotion on my skin? Same question goes for the cream the doctor gave me. Cant remember the name if it but the tube is very small and your supposed to put it on every 3 hour. If I put the cream every where I feel pain the tube will finish in a day. But the thing is that I kind of rubbed the cream on the lower buttocks and inner thighs and today it's burning more than yesterday. Is the cream supposed to burn? Is it just meant to be put on if there are sores present? I think my biddest fear is that I may spread it to other areas so that's why my questions always kind of lead to trasmossion and such. I spoke to someone today who told me he was unsure if the pain or burning was herpedic or something else. I cant imagine anything else being wrong with me since I tested myself for eveything under the sun after I found out I had this. I thank you also for the words of incouragement. I see people saying it all the time on this site. It seems that for some it really IS no terrible thing and they can handle it or it doesnt hurt them as much. I kind of think I may fall into the same category as one guy I just saw that said he had it for 5 years and his pain has never gone away. How do you live like that? i cannot imagine I would live my life for years and years with this pain all the time. Hi Rojer, You will learn to live with many different kinds of adversity - Herpes is just one of them. The pain does get better. My herpes pain was so severe, well, I can't even describe it. I also think that women, because of the way they are built, tend to have more pain issues. Plus, I developed some pretty awful neuralgia that ran up and down my legs. I know herpes pain. :) I also have type 1 and now don't have any outbreaks. Unfortunately, I can't really help you with the cream questions. I don't know anything about the creams. :( But I don't think they are supposed to burn. Oh, I should mention that steroids make herpes much worse. Make sure you aren't using a steroid cream or taking any steroids. For now, don't assume the worst case scenario. Just get through each day and remember that you're a great guy. Take care, ar > > Hi Rojer, > > [quoted text clipped - 103 lines] > away. How do you live like that? i cannot imagine I would live my life > for years and years with this pain all the time. > Hi Rojer, > [quoted text clipped - 4 lines] > pretty awful neuralgia that ran up and down my legs. I know herpes pain. > :) I also have type 1 and now don't have any outbreaks. How long have you had it? How long did you suffer with the pain and how long has it been since you had an outbreak? > Unfortunately, I can't really help you with the cream questions. I don't > know anything about the creams. :( But I don't think they are supposed to [quoted text clipped - 8 lines] > Take care > ar Also, I have been getting a little of the same burning pain lower on my right leg (a little over the back of my knee) Is it possible that clothing (like the sweat pants that I wear to sleep ) can transmit it lower on my leg? Thanks Rojer, The virus needs skin to skin contact in order to transmit. Your clothing can not transmit the virus. You are feeling these pains in other locations because the nerves that run through the lower half of your body all "attach" to the same location - and that location is where the herpes virus lives. I've had type 1, genital, herpes for 18 years. The first two years were difficult for me but the first year was much worse. It's been so long since I've had an outbreak, I don't remember when the last one was. I would say at least five to six years ago. Take care, ar > > Hi Rojer, > > [quoted text clipped - 26 lines] > lower on my leg? > Thanks > Rojer, > [quoted text clipped - 10 lines] > Take care, > ar That gives me a lot of hope, ar. To think that some day will come and I wont feel this pain. I do feel a little better today. Just a persistant pain that just wont go away. Aspirin is my new friend along with this one now. :) One last question and I promise not to be such a bother. Because I feel this pain almost constantly should I asume that I'm contageous constantly? I mean how do I know when I'm not or when I am if the pain is always there? By your last post I imagine that even though I feel pain now on both my legs in the back that doesnt mean I'm contageous there because I'm probably just feeling "nerve" pain? Or is it everywhere I feel pain I'm contageous? I want to at least snuggle with my fiance without having to wear sweat pants or pjs. Even though she's already positive I'm scared I'll give it to her on her leg or back or something. Have another appt with my doctor tomorrow but I'm going to ask him for a referal to one of the doctors Angela's information pointed me to. Maybe they will be a little more sympathetic than the guy I'm seeing now. Hi Rojer, You aren't being a bother, at all. Your girlfriend already has genital herpes. She can not get it again. Let me say it again: she can only get genital herpes once. Once she has it, she has it. If you both have different types of herpes (1 or 2) then it is possible to reinfect. The herpes virus lives in the nerve bundle that services the area of infection. It can travel up and down all the nerves that come in and out of that bundle. That includes the genital area, the backside, perhaps the lower back, and the legs. Once the virus lives there, you can't be reinfected....you already have it. Remember my pregnancy analogy? Once you are pregnant, you can't get pregnant again. :) You will NOT reinfect your girlfriend by cuddling with her. She already has herpes. And you say that it is the same type as yours. It sounds like you have neuralgia. That's what that pain in your legs is. It is not where you are contagious, I don't think. Neuralgia is just nerves that are reacting to the virus. It is possible to be contagious anywhere in the boxer short area with genital herpes. But that does NOT mean that the entire area is contagious all the time. It's just one spot every now and then. Since you are newly infected, you will be more contagious while your body learns to fight the virus. Take care, ar > > Rojer, > > [quoted text clipped - 28 lines] > information pointed me to. Maybe they will be a little more > sympathetic than the guy I'm seeing now. > Hi Rojer, > [quoted text clipped - 11 lines] > reinfected....you already have it. Remember my pregnancy analogy? Once you > are pregnant, you can't get pregnant again. :) Yeah, ar. I do remember. I'm sorry. It's just that I have this idea that if I put my leg on her she will get it all over. I'm just so afraid of this thing becuase I still dont know everything. We do have the same type I think becuase we both showed the same amount of anti bodies (4.63) for Type 1. so I guess I should just start trying to understand that since we both have it we should just try and resume our sex life if and when we dont show any symptoms. Well. Thanks again, ar. God bless. > You will NOT reinfect your girlfriend by cuddling with her. She already has > herpes. And you say that it is the same type as yours. [quoted text clipped - 53 lines] > > information pointed me to. Maybe they will be a little more > > sympathetic than the guy I'm seeing now. <snip> > Yeah, ar. I do remember. I'm sorry. It's just that I have this idea > that if I put my leg on her she will get it all over. I'm just so [quoted text clipped - 4 lines] > our sex life if and when we dont show any symptoms. > Well. Thanks again, ar. God bless. Don't I remember you saying she doesn't have outbreaks? So, how are you sure she has genital herpes? Hang in -G > <snip> > > Yeah, ar. I do remember. I'm sorry. It's just that I have this idea [quoted text clipped - 11 lines] > Hang in > -G Oh yeah, G. Go ahead. Give me more to worry about. :) Just kidding. Dont you know thats part of my problem in dealing with this. No, she hasnt had an OB. I think I have had three. I think I can get a little annoying because I kind of ask the same questions about if I can make her have an OB but the thing is that in my head all I can think of is how CAN I be sure she has it. The doctor didnt even want to test her innitially just because I had it. Said she should just wait to see if she had an outbreak. (I found that annoying). The test came back possitive for type one (4.63) and for type 2 she had some (0.13) but it was like under the negative side. I dont understand that one. does it mean she has both. I had the same results. It said positive for 1 and negative for 2 but I DID have .014 for 2. If you can explain that one to me I'd appreciate it. Anyways, like I told ar, I cant even get close to her while we sleep becuase I dream about her getting sores on her leg or thigh if my legs rubs against her because I think maybe it's wrong and she doesnt have it and I'm going to give it to her. ar did a great job explaining what would be the case if she does have it and then no worries from there (except for maybe the OB's). Since this thing started I have become obsessed. I dont sleep in my boxers anymore, I was my hands and put sanitizer on my hands so much that the skin on my hands is actually peeling. Although I have been feeling much better the last few days I still havent made love to my fiance even though she has been asking me to. We're going to Puerto Rico for my friends wedding on thursday I have been praying that I dont get one before we leave or that if she has IT she doesnt have an outbreak that will ruin her mini vacation. I'm trying, G. :) Roj > > <snip> > > > Yeah, ar. I do remember. I'm sorry. It's just that I have this idea [quoted text clipped - 20 lines] > innitially just because I had it. Said she should just wait to see if > she had an outbreak. (I found that annoying). Not only annoying, but perpetuates the myth that if she doesn't have an outbreak, she isn't infected with a herpes virus. Sheez! Very dumb on the part of the doc. >The test came back > possitive for type one (4.63) and for type 2 she had some (0.13) but > it was like under the negative side. I dont understand that one. does > it mean she has both. I had the same results. It said positive for 1 > and negative for 2 but I DID have .014 for 2. If you can explain that > one to me I'd appreciate it. Well, I'd probably recommend a herpes specific Western Blot blood test for the both of you. THAT test will tell you, once and for all, who has what. It doesn't mess around with .13's and .014's, etc. It just says "HSV1 Positive" (or Negative), "HSV2 Positive" (or Negative). No guessing games. No having to analyze the results. Maybe that's why it's the gold standard in herpes blood tests, and also why it's more expensive than the other tests. Personally, I'd want to know for sure. But, that's just me. >Anyways, like I told ar, I cant even get > close to her while we sleep becuase I dream about her getting sores on [quoted text clipped - 5 lines] > anymore, I was my hands and put sanitizer on my hands so much that the > skin on my hands is actually peeling. You can be TOO worried about it...and your descriptions seem to indicate you are. Simply washing hands with soap and water after touching "the area" should do it. No need for "sanitizer". Anything else, and yeah...you're obsessing. So...stop it! ::grin:: Yeah, yeah...I know. Much easier said than done. But really, try to take it easy. After a bit of time goes by, you'll wonder how you could ever be SOOO concerned about it. It does take time to get beyond that initial obsessing tho. Been there...done that. < Although I have been feeling > much better the last few days I still havent made love to my fiance > even though she has been asking me to. We're going to Puerto Rico for > my friends wedding on thursday I have been praying that I dont get one > before we leave or that if she has IT she doesnt have an outbreak that > will ruin her mini vacation. I don't want to get too graphic here, but there IS more than one way to skin a cat. If you're worried about your below the belt area coming into contact with hers and spreading the virus that way, how about not bumping those parts together. Yet, "making love" can still happen. Ever hear of oral sex? You provide it to her? Granted, if you've got HSV1 below the belt, chances are that's how you obtained it in the first place (someone providing oral sex to you at a time when they were contagious). But, since she's already got antibody to HSV1, and you're worried about the below the belt thing...well, like I say--there IS more than one way to provide the lass with a thrill during her mini vacation. "Praying"? Shoot, there's a much better way to MAKE SURE rather than leave it up to the Gods. Take meds in advance! It's called 'suppression' and it's an accepted practice for those who don't want to infect a partner. Only problem may be in finding a doc who knows the latest and greatest research into this virus so they're knowledgeable about this. > I'm trying, G. :) > Roj Hang in -G "> I don't want to get too graphic here, but there IS more than one way to skin > a cat. If you're worried about your below the belt area coming into contact > with hers and spreading the virus that way, how about not bumping those [quoted text clipped - 11 lines] > Only problem may be in finding a doc who knows the latest and greatest > research into this virus so they're knowledgeable about this. G, I wish it were that easy. I soooo wish I could do that. I know for a lot of you out there this is the answer but unfortunately I have been on Valtrex and now Famvir since this whole thing started at the end of august and they havent helped. You know, I woke up this morning after feeling good like I have been for the last like 5 days. I kissed my fiance and told her how happy I was because I have been feeling so good. I get in my car and guess what??? I start to feel the burning pain again that always preceeds my next 3 weeks of pain. My happiness just got sucked out of me. Why am I the only person that isnt helped by taking the meds??? How can life be like this? Not to get too graphic either but about a week and a half ago I noticed these 3 tiny bumps on my p****. They havent gone away but they didnt hurt or anything. they were just there. Today I get to the office and go straight to the bathroom to check and they have grown. I checked because I was feeling a little discomfort there in the car. Now I'm feeling burning there as well. I cant take this, guys. Meds, sleep, lysine, vitamins. Nothing. I keep thinking about ar and use him as hope. He said his first year was the worst and I think well if he got through it and he's fine now I guess I things will get better. They just dont seem to be now. I'm not a religeous person anymore but right now I find myself praying that if there's a GOD for him to help me. Anyways, I was going to answer to your other comment but I guess I'l get to it later. Take care. Hey there, Rojer, I'm soooo sorry that you still aren't feeling better. How long did you take the meds for? Perhaps you needed a higher dosage? Take care, ar > "> I don't want to get too graphic here, but there IS more than one > way to skin [quoted text clipped - 38 lines] > get to it later. > Take care. > Hey there, Rojer, > [quoted text clipped - 3 lines] > Take care, > ar Hey bud. Thanks for the kind words. BTW, who's that guy perl.? I dont know everyone enough yet but the guy confuses the s*** out of me somethimes. Anyways, I have been taking the Valtrex since August 28. The first day I started feeling pain the doctor called in a prescription for me. I took it for that whole month (500 mg twice a day). Dont know if it helped any at all because that was the worst pain I have ever felt in my life......... and I'm no wuz. :) I stopped taking the meds for a week but since the pain came back I went right back on it. After that prescription ended I asked the doctor to change it to famvir to see if it would help. I read here that sometimes people take to one better than the other. So the famvir is 500 mg 3 times a day but it's weaker, no? You think I should take a higher dose? Wasn't there a post here that said the suggested dosage during an outbreak it like 2000 mg a day? Dude, I'll OD on the stuff if it would help me. Is there a risk if I up it to double the current dosage? Thanks again, ar Hey there, Rojer, Yeah, just ignore Perl. Lots of the stuff he posts is misinformation. Sorry he caused you confusion. And speaking of confusion, just so you don't feel silly later...I'm a girl. :) I'm not an expert on the meds because I have never taken them. However, Angela and Mike should have some information on the dosages that are considered safe. You need to take the pills everyday - which you are. I would suggest going to 2000 a day. So far, there has been no evidence that taking the pills will hurt your liver but there is some suspicion. However, you are obviously in need of some help. Just know that once your body gets this thing under control, you can start dropping your dosage and see what happens. This is a pretty terribly time, I know. But it will get better. Remember, for pain, take ibuprofin. Also, some people have told me that using Tea Tree Oil on outbreaks help to clear them up faster. And some have said using the regular Listerine mouthwash on the outbreaks helps as well. But I believe it stings. :) Keep us up to date on how you're doing. ar > > Hey there, Rojer, > > [quoted text clipped - 21 lines] > dosage? > Thanks again, ar > Hey there, Rojer, > [quoted text clipped - 22 lines] > > ar :) yup. Little misunderstandig there. Thought you were a guy although I have to tell you that I did , no lie, think "this is a pretty caring guy..for a guy". lol Anyways, yeah it does seem like a pretty terible time but you know what? I have seen that the pain is not as intence as the previous times. Good sign I guess. Hopefully the time it lasts is also less. My fiance had the talk with me 2 days ago. Says she cant deal with not having a sex life. i asked her if she didnt think she could be patient and wait till I learn to deal with this thing but I dont kow. She's 25, I'm 32. I dont think she has the patience. What can you do, right? I feel terrible and happy at the same time because I know she feels like this because she doesnt have any symptoms so she can still feel sexual. I, on the other hand, cant even think about sex right now. Hate to lose her over this. I have been extra attentive and romantic to try and make her feel better but at 25 sex is just always on her mind. Lucky guy i am, huh? Roj Hey Rojer, Well, I guess your fiance is a little young in mind to not understand that you need some time. I'm sorry to hear that. But I am happy to hear that the pain is getting less. :) ar > > Hey there, Rojer, > > [quoted text clipped - 39 lines] > on her mind. Lucky guy i am, huh? > Roj Wow...bummer. You know Rojer, there are some strains of the virus that are resistant to meds. You don't develop the strain, you get infected by it. Maybe yours is such? Has the doc suggested increasing the dosage? I know a STD expert that says we really can take much higher doses of antivirals without much problem. You might check that out. However, 500mg x 3 of Famvir (as you mention in another post) is pretty high already I think. Never taken Famvir though...I hang with the cheaper, generic Acyclovir. It seems to work for me, but if it didn't, I'd be increasing the dosage for sure! Hang in -G > "> I don't want to get too graphic here, but there IS more than one > way to skin [quoted text clipped - 38 lines] > get to it later. > Take care. > I don't want to get too graphic here, but there IS more than one way to skin > a cat. If you're worried about your below the belt area coming into contact [quoted text clipped - 6 lines] > thing...well, like I say--there IS more than one way to provide the lass > with a thrill during her mini vacation. Hey, I hear what your saying, G. Trust me, us latin men are very proud of our "skills" in that regard. The problem is that if I dont know *where* she has it that can cause further problems. I dont think we should do much of anything without some serious armor until we know who has what where. I just told ar that she is getting a bit impatient with me so I better figure something out soon. I know there are couples out there that have chosen to not use protection and I admire that. That's true love considering the pain it can cause. I'm not sure if saying "to heck with it, it doesnt matter where we get it" is a good idea. Are there couples here that have made that decision? Just not cared and continued oral and regualer sex? Just curious. Oh, checked with her doc. their lab doesnt do the western block. They use the herpes select. Good or bad? I told her to get retested and I will as well. Roj You have to do some extra steps to get the Western Blot. It's only performed in one lab in the USA and one lab in Canada. We can help you get that information if you want it. I've heard good things about the Herpes Select, though. My ex and I were together for 17 years. We didn't use condoms very often. He never showed signs of getting herpes from me. For some, it really doesn't matter because the virus is such a minimal thing compared to being with someone you love. You, however, are having a tough time with the virus so it is all subjective. She should definitely get tested so that you know where you both stand. Take care, ar > > I don't want to get too graphic here, but there IS more than one way to skin > > a cat. If you're worried about your below the belt area coming into contact [quoted text clipped - 23 lines] > as well. > Roj > You have to do some extra steps to get the Western Blot. It's only > performed in one lab in the USA and one lab in Canada. We can help you get > that information if you want it. I've heard good things about the Herpes > Select, though. Yeah, ar. If you can help me with that please do. Do I request that my doctor send it to that lab or do I have to go to a specific doctor that will send it there. Why are the other tests that test for tithers so unreliable? I mean, if I have antibodies for type 1 isnt it safe to say I have it? Specially with the discomfort I feel. As for her would she sow that many antibodies if she didnt have it? Roj PS Thought I was out of te woods. But today things seem to be getting a little worse. > My ex and I were together for 17 years. We didn't use condoms very often. > He never showed signs of getting herpes from me. For some, it really [quoted text clipped - 39 lines] > > as well. > > Roj Hi Rojer, I'm sorry that things are getting worse again. :( The first step to getting the Herpes Specific Western Blot (yes, use the full name) is to have your doctor call: 1-800-713-5198 This is the University of Washington. They have a sheet that they can fax to your doctor explaining how to have the blood spun and separated and to send only the serum to them. The doctor can do the rest. However, in my case, the doctor didn't help. So, I had him sign the order sheet and then went to the hospital and had them take the blood and spin and separate it and then they mailed it to the lab in Washington State. Results take about 3 weeks. I really don't know why the other tests are confusing. Your assumptions seem logical but for some reason it doesn't work out that way. Take care, ar > > You have to do some extra steps to get the Western Blot. It's only > > performed in one lab in the USA and one lab in Canada. We can help you get [quoted text clipped - 55 lines] > > > as well. > > > Roj > Hi Rojer, > [quoted text clipped - 16 lines] > Take care, > ar Hi ar, thanks for that info. I'll call my Doctor and hers today and see how receptive they are to doing this for us. I already have an idea what my docs reaction is going to be. "Oh, it's no big deal. Just deal with it. yada, yada, yada". BTW, Puerto Rico was great. The wedding was at the Ritz in San Juan on the beach. I was very afraid that I would be in pain the whole weekend but as it turns out I wasn't. I think you were right about the neuralgia. The reason I say that is that although I have never been completely back to normal (I always feel something in the lower buttocks and legs region)I tried something that worked to reduce the pain. I dont know if it was you or someone else that said sun burn lotion with lidocaine might work but I used it and it dulled the pain enough that i almost forgot about it most of the time. If that worked and I dont really feel any pain from blisters than I have to think that neurolgia is the cause of most of my problems. I plan to talk to y doctor about taht also. figured someone might find that info helpful. Lidocaine does help to reduse pain. Also, G, my finace and I finally had a romantic night and made love for the first time since this thing all started. It felt wonderful. I still kept my shorts on until I know for sure what the deal is but she was happy to have the intimate contact she has been craving for. Roj Roj, I'm very glad to hear that you and your fiance were able to spend that time together. And, I have never heard about the lidocaine. Thanks for passing that information on. ar > > Hi Rojer, > > [quoted text clipped - 43 lines] > > Roj Well, that last paragraph takes a load off MY mind! ::grin:: Anyway...glad you're gettin' frisky again. Hang in -G > > Hi Rojer, > > [quoted text clipped - 43 lines] > > Roj > Well, that last paragraph takes a load off MY mind! ::grin:: > > Anyway...glad you're gettin' frisky again. > > Hang in > -G LOL. Wanted to update you guys on how things were going. Is that ok, BTW? Dont know if Q&A is the only norm. I just remember that when I first found this group I did a lot of reading before I dared post something and that help me so I want to share my experiences in case it can help others. First thing is that I want to thank you guys for all your help. All the support and posts in here helped me tremendeously. I went to my doctor again this week to talk about the pain I am still feeling and a few follow up questions. He refered me to a neurologist. Funny thing is...he told me that it was unlikely that I was feeling this pain because of the herpes. He told me that neuralgia is usualy connected to shingles and not herpes. When I asked him why he thought that I was having so much trouble he said he thought it was psychosematic (spell that right?). I had to laugh. I am in pain every day since this thing started and he thinks it's in my head. Funny thing is that I am actually feeling pretty good about things. Except for the pain I have started to come to terms with it and have been feeling...dare I say it....happy. since the pain I feel is not connected to any sores(i only get two so far) I think once I get a hold of the other pain I'll be a lot happier. I'll keep everyone posted about what the neurologist says about that but he did say that if it is neuralgia it usually goes away after a while. I was talking to a friend of mine and he shared with me that he gets sores in his mouth often when he gets stressed. Taliking about the way this society looks at this thing...I think the feeling was like my symptoms were somehow worse or rather what I had was worse than what he had because of where mine is. I told him if he knew that what we both had was the same thing and he kind of said yeah but there was still that feeling. It's like if he meets a girl takes her home and they have oral sex it's different than if I took a girl home and had sex. In my mind I would never have sex without telling a potential partner but because in him its a "cold sore" it's ok. ironic. Later guys Thanks for the update, Rojer. We love updates. :) ar > > Well, that last paragraph takes a load off MY mind! ::grin:: > > [quoted text clipped - 39 lines] > ironic. > Later guys Hi Roger, Hang on to this web site: http://members.cox.net/yoshi2me/Links/Links.htm . > 1) Has anyone out there ever felt this much pain or had this many > outbreacks even on valtrex. (by the way, I switched to famvir this > week to see if that would help and started taking lysine pills and > vitamins and garlic.) It's going to be difficult to determine if the L-Lysine, vitamins, and garlic will work if you are taking them all at the same time along with your antiviral. What I would do is take each one seperately to see if it helps any. That way you will know for sure instead of having to guess which one is working. How much Valtrex are you prescribed to take when you are having a herpes outbreak? 500 mg daily for suppression is standard and then 500 mg twice daily is a standard dose for flare ups. I have heard of people switching to Famvir if the Valtrex is not working but that's almost pointless unless you really have taken the Valtrex appropriately. Also, herpes flare ups do decrease over time in most people. > 2) Anyone else had these symptoms (sore throat, itchy, pain in the > buttocks, etc.) I have had sore throats in the past but they had nothing to do with herpes. > 3) Im scared to shower because I'm scared that the virus will run down > my leg and infect my feet or something. Herpes doesn't work that way. Hang on to the Updated Herpes Handbook. It's a free download on the internet if you are able to read pdf files. There is also a version you can read right off the site: http://www.westoverheights.com/freebooktext.html . > 4) Is drying yourself with a towel going to spread the virus all over > my body. No. Herpes doesn't function that way at all. > 5) If my fiance already has the same type and we have sex and she > doesnt have symptoms will I make her have symptoms by having sex or > shoudl I make love to her with my shorts on and a condom? If you both have herpes then you are not going to keep giving it back and forth. Please read both those links that I provided for you. > 6)If anyone is in the new york area can you recommend a place to go to > for help dealing with this and maybe a doctor who is knowligable with > this disease? You can find lots of support groups in New York. Here's is an updated listing: http://members.cox.net/yoshi2me/USA/USA.htm . You can also find good herpes aware docs here: http://www.racoon.com/herpes/main/doctors.htm . Hang in there ... if you'd like to try another online support group Picking Up the Pieces would be a good one to try: http://health.groups.yahoo.com/group/PickingUpThePieces/ . Hang in there . . . Angela <snip> >Can I ask everyone a few questions? Absolutely. Sorry you're in such pain, but welcome. >1) Has anyone out there ever felt this much pain or had this many >outbreacks even on valtrex. (by the way, I switched to famvir this >week to see if that would help and started taking lysine pills and >vitamins and garlic.) The pain you've described doesn't happen for most people, but it's not unheard of. You're doing the right thing in trying some of the different antiviral medicines, but it may be that you'll have suffer until your body can slowly deal with the virus that is tormenting you. >2) Anyone else had these symptoms (sore throat, itchy, pain in the >buttocks, etc.) Many people get those symptoms, but not usually as severe or as long lasting as you seem to. >3) Im scared to shower because I'm scared that the virus will run down >my leg and infect my feet or something. The virus doesn't work that way, but if it did being in a shower is no different than walking around. In fact, soap and water will help destroy any viruses that are on your skin, so you might feel better if you take *more* showers. >4) Is drying yourself with a towel going to spread the virus all over >my body. No, as long as you don't rub an outbreak and then rub the same section of towel in your eyes or into a recent wound. >5) If my fiance already has the same type and we have sex and she >doesnt have symptoms will I make her have symptoms by having sex or >shoudl I make love to her with my shorts on and a condom? If you both have the same type you needn't worry about anything other than common, sensible hygiene. If she is not already having outbreaks as severely as you, she probably never will. The difference is in each of your immune systems, not in the viruses you both have. >6)If anyone is in the new york area can you recommend a place to go to >for help dealing with this and maybe a doctor who is knowligable with >this disease? Try this: http://nyhelp.org/ >I really want to thank anyone who has actually read this whole >rambling post. I cannot tell you how much I would appreciate any >advise. Maybe someone out there can suggest something that will take >this pain away and make me feel whole again. Try searching for "neuralgia" as related to shingles or "herpetic". You may turn up something that you can take to your Doc and ask about. Take care, Mike thank for your replies, guys. I feel so much better knowing I have people I can actually "talk" to. I've been feeling a little lonely because of this. I'm a young, good looking, hispanic male with a good career. I was the most confident person I knew. Everyone admired me for that. Now I feel so shameful. So dirty. I'm afraid to let anyone touch me. Such a horrible feeling. I still have hope and more because of the answers I have gotten from all of you. Thank you all from the bottom of my heart.Oh, and thanks for that info Angela. I was going to reach out to you for it. >thank for your replies, guys. I feel so much better knowing I have >people I can actually "talk" to. I've been feeling a little lonely [quoted text clipped - 5 lines] >bottom of my heart.Oh, and thanks for that info Angela. I was going to >reach out to you for it. There's nothing to be ashamed about, Rojer. Sex is a natural part of life, and for at least 25% of us, herpes is a natural byproduct of sex. I know how hard it is though when you first find out. We've all gone through the turmoil and feelings of guilt, but sooner or later we begin to put the thing in perspective and realize having HSV isn't as bad as we initially feared it would be. You *will* get on with your life, and your love life. Just give yourself a little time and try to learn as much as you can about your new friend. We're here to help. Take care, Mike |
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