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LiveNLearn

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  1. I have had hsv for three years now. It is true that everyone's body responds differently with this virus. It is a tricky little virus. For me, I have more pain from the virus than actual sores that come from OB's. In the first year, I had an outbreak a month. Each time I would get my period, I would get an OB. I felt so hopeless, and I tried acyclovir and the meds made me feel worse than I felt without taking them. I would get dizzy and weak and nauseous. So, I got through my OB's by using tea tree oil to dry out the blisters. I did a ton of reading and researching hsv so I would know what I was dealing with. However, that first year was horrifying for me. I was afraid to try any other meds because of my bad response to the acyclovir. The past two years, the OB's come, but I hardly ever get actual blisters. I get skin hypersensitivity, hip pain, sciatic pain, and lower back pain. All of my pain is on my right side. I feel nothing on my left side at all. I have a constant burning on the right side of my lower back that radiates over my right hip bone. At times my skin gets so sensitive that it hurts to have clothing on it. Just this year my insurance began covering famvir, which is an antiviral that I will use when my body is feeling wrecked. I don't take it daily, although my doc tells me to take two 250mg tabs per day. I don't like to take meds of any kind, so for me, I only use them when my pain is unbearable. I have to also tell you, that from my experience, it seems that women tend to suffer more from hsv than men do overall. I know some men experience OB's that are painful and they have the aches and pains, but I also know many men who seem to get off so easily with this virus. My ex husband gave it to me, and he never had one OB in his life. He doesn't even remember having any low back pain or any type of suspicious symptoms. So, he tested positive through blood work for both type 1 and type 2, but never had a symptom or a cold sore, ever. There are also many people who say that the first year is the worst, and then it gets better. Then, there are those like me, who seem to have more visits from the virus. I have had endless blood work and tests to see if something else is wrong with me, if some other problem is causing my tendency to have ongoing hsv symptoms, but I have a clean bill of health. All my blood works and tests have always come back perfect and negative. The only issue I have ever found was that my vit D was low. I supplement that on a daily basis, and it has not been low for the last year. Everyone is different. You can't even begin to know how your body will handle it, until you work through it and time passes. If you can take the antivirals without issue, then take them. You can actually use a small dose on a daily basis for the first months and some docs believe this helps your body better handle the virus. You can also use the meds when you feel an OB coming on. You will get tingles and weird shooting pains that will clue you in to the fact that the virus has become activated. You will get to know how your body is going to respond. Some people swear by lysine. For me personally, I did not see any improvement by taking it. The only thing I have that gives me relief is the famvir. And, as I mentioned, using tea tree oil topically helps dry out the blisters quicker. I know you aren't supposed to use it full strength, but I do. I'm so sorry you are having such a hard time thus far. I am here if you ever want to message me with questions. It will get better. Use your down time to learn more about hsv.
  2. Update on my lymph nodes in the groin area. I have had hsv for over two years. The first, I'd say, 1.5 years, I noticed my nodes would swell with hsv activity. Prodromes, and also with ob's. Now, after the 2 year mark, I do not notice them anymore. It bothered me a great deal at first. It's like your body goes into "red alert" mode, and everything becomes hypersensitive and aware that something is going on. So, mine have eased with time.
  3. @In_The_Same_Boat - The acyclovir didn't help me. It did not help my symptoms. It just made me feel ill the whole time I was taking it. For me, the famvir is worlds better, and relieves those symptoms, I'd say 90%. Another thing I started today, which may totally be a fluke or a coincidence, is a 1000 mcg liquid supplement of vit B12 with folic acid. I read that vit b12 can help nerve pain. So, today, I tried it, and the one spot on my right thigh that was tingling has stopped. I also read a great deal about vit D, and it's relation to some of the symptoms I felt were hsv related. I am always severely deficient in vit D when they do bloodwork, and haven't taken my supplements for a couple months. I am back on those today, too. I get the microlingual vit D supplement in 5000 mg. So, again, a coincidence or actually helping, I can't say for sure. But, it can't hurt to try adding these supplements to your daily routine. I paid about $10 for each of these, and got them at whole foods to assure their quality. @dreamingofsomeone167 I was first diagnosed with hsv when I was 42. I agree with you that hormone levels could have something to do with frequency of ob's. I have had this virus for over 2 years, and man, it has kicked my butt. And, I am so careful about what I eat, etc. I eat organic foods, hardly any dairy at all, very little nuts/chocolate. I do yoga. And, I have had so much blood work done it's not even funny. I have a great doctor who appeases my Google searches, and does blood work on me to calm my fears. The only thing that has come back in any of my blood work is my vit D deficiency, which I am finding can actually cause havoc. It just blows my mind how much is not known about this virus, and how they have not managed to find a cure for it. Or even something that alleviates the side effects and symptoms.
  4. Well I am seeing success using the famvir daily. All those weird shooting pains and aches and hypersensitive skin are gone. Which is AWESOME! My only thoughts are about the effects of taking them long term. I know many people have used acyclovir for years upon years, without any ill effects. However, the acyclovir made me feel dizzy, off balance, and nauseous. It just didn't work for me because I felt so bad when I was taking it. The famvir does not cause any side effects, so it's good. I think what I may do is talk with my doc about prescribing me the 250 mg. pills instead of the 500 mg. Then I can try to backing off of them as someone suggested. Maybe going to one every other day, etc. Finding that threshold. Has anyone had issues with having ob's even when on antivirals? I think I read some posts on the site from people who were still experiencing issues even while taking the antivirals. Thanks for your input!!!!
  5. I wondered how many of you have used an antiviral as a prophylactic treatment to suppress the hsv virus. I have had hsv for over two years, and tried to use acyclovir soon after being diagnosed. It caused so many side effects, that I felt better not using it at all. I just dealt with my ob's as they came. I wonder about the effects of using these antivirals over the long term, and I can't seem to find much info online. I currently have famvir 500 mg tabs, and take one per day as a suppressant therapy. I have been taking them for the past three weeks, and all the shooting pains in my legs have gone away. The hypersensitive skin has gone away. The sciatic type aches have gone away. They are helping me with all the prodrome stuff that I had going on. I don't take any other meds, and am even hesitant to use tylenol, or otc drugs. Taking the antiviral every day is making me want to know more about the effectiveness over the long term. About whether they cause any permanent damage or difficulty in the body's natural abilities to fight off the virus. I guess it would make me feel more at ease to hear about other people's experiences with using the antivirals as a daily suppressant. Thank you for chiming in on this one!
  6. Hello. I really do believe that everyone's body responds differently. It's been 2.5 years since I was diagnosed, and I have frequent OB'S, and lots of prodrome/nerve pain on a regular basis. For the first year or so I only used the antivirals when I was having an OB. The acyclovir made me feel really ill, so I avoided taking it daily as a suppressive therapy. Then my insurance company started covering famvir, so I switched over to that. For the past couple weeks I have been taking one 500 mg tab a day to try and alleviate the constant pain I have. My pain is always one sided. I will get areas of skin on my thigh or my calf that I can't even stand to have clothing on. Super sensitive and painful. I also get pain deep inside one of my thighs, that kind of feels like sciatic pain. I also have been getting the same super sensitive skin on one arm/hand. It's so crazy how it jumps around my body, from one side to the other. After two years, I am beginning to feel like my body really has not gotten a handle on this virus. I do not always have ob's from the nerve pain and tingles, but the pain all over my body is pretty constant. It does hurt to sit down, to drive, etc. Hard to find a comfortable position. I eat pretty healthy, and avoid nuts and chocolate. However, I am beginning to feel like I need to try cutting caffeine and sugar out to see if it alleviates my pain/symptoms. So, even though many people on this website will tell their stories, that does not mean your body will react or respond the same way. I have been waiting and waiting for my body to slow down it's symptoms and ob's, and it hasn't really happened yet after 2.5 years. I have a pretty high stress level in my life. I have been told that stress contributes to prodromes and ob's, however, for some of us there is no way to remove all stress from our lives. I can only comment and share my own personal experiences. So, you will have to try all the tips that are commonly recommended, and see if your body feels better. I am here if you want to talk, or personal message me.
  7. I tried valcyclovir, but prefer famvir. I had side effects from the valcyclovir, and do not with famvir. Not sure why, but it works best for me. I don't take it everyday, but only use it when I feel prodome symptoms coming on. I was first diagnosed two years ago, and I still have ob's and lots of prodome tingles, pains, etc. I prefer not to take medication every day, so I just try and deal with things as they happen. Many people say they have no symptoms after the first year or two, but personally, mine have not slowed down. Many people say, l-lysine, vit c, and a vitamin every day can help. I do the vit c and vitamins. I have also heard that chocolate, nuts, and caffeine worsen ob's. I eat organic, try to avoid the problematic foods, take the antivirals when I feel symptoms, and meditate and decompress on a regular basis. None of these things prevent me from symptoms. I have also had tons of blood work done to make sure nothing else is wrong with me, and nothing can be found. It is incredibly frustrating. So, my list of triggers thus far are: 1. menstrual cycles 2. stress 3. not enough sleep 4. chocolate 5. nuts 6. caffeine 7. wearing leggings or tight jeans frequently When I do end up with a bump or two, I always use straight tea tree oil directly on them. I hope you start feeling better soon. High stress times for me always create drama inside my body.
  8. I am heeding all of the advice and suggestions by everyone, so thank you for your input. To ShaeShae, I totally understand what you are saying. It comes on at the weirdest times, and though everyone points to pre-existing anxiety, or other factors that are contributing to my sudden experiences with anxiety post-diagnosis, I really do believe there is some weird connection between having this virus inside your body, and the onset or exaggeration of anxiety. There's something weird about how the virus changes our bodies and how we handle other things.
  9. Do you not think that when the hsv virus is activated, it causes sensitivity in other systems in your body? When your immune system is fighting it, it is put on alert. Hypersensitive. And, I don't have anxiety every day. It hits me every now and then out of nowhere. I did talk to my Doc this morning, and she told me there could be many different factors. Hormonal changes at 40, thyroid issues, histamine intolerance due to the many seasonal and food allergies I have, etc. So, there could be something else contributing to it. I just feel like it's something I never dealt with before being diagnosed. Coincidental, sure. Related, maybe. I just think there are many more facets to this virus.
  10. It has been just over two years since my initial diagnosis, and I believe there is a direct correlation between the herpes virus and anxiety. And, I don't mean anxiety over my hsv status. I'm talking real, crazy, overwhelming anxiety inside my body, where I had none before. Before my diagnosis with hsv, I was an outgoing, social, comfortable in all situations, kind of a girl. I had never in my life experienced a full blown panic/anxiety attack until after this virus took residence inside of me. I began to suffer this crazy, heart racing, panic attack, anxiety stuff that would take me over here and there. These attacks would come on without any warning, and in situations I have been in a million times. Familiar and comfortable surroundings would bring them on. In looking back over my life, and how many times I have dealt with panic and anxiety over the last two years, I am willing to bet that at sometime in the future, scientists are going to announce the link between hsv and anxiety. It is too much of a coincidence for me. And, again, I'm not talking about anxiety that comes over us when we sit and think about this virus and all the possible ramifications of it. I'm not talking about panic related to stress that comes from diagnosis, or realization of the life long battle that will ensue. Does anyone else have my same experience, and do you think it's just coincidence...or do you feel an unknown, unstated, unresearched link between hsv and anxiety/panic???
  11. I have been on both sides of this equation. Prior to my own diagnosis, I remember dating a guy who disclosed soon after we began seeing one another. When he told me, I freaked out. I mean, I didn't freak out in front of him, but I decided when he told me I was not going to let things go any further. Fear of the unknown, and also that lovely stigma that comes with the virus. I remember making up some excuse about it, like I wasn't really ready for a relationship and it had nothing to do with his status...even though I was scared to death of it. So, now that I am on this end, I have not had to disclose to anyone because I got this virus from my ex-husband. There has been no one else to have to disclose to. However, I have two close friends who have the virus, and I listen to both of them constantly, telling me how hard it is to be rejected. I haven't had a boyfriend since my divorce, so I have yet to cross this bridge. Since my diagnosis over two years ago, I have learned so much about this virus. I have read more than I could ever remember. I realize now how common it is, and how many docs just kind of push it off like it's not a big deal. That a high percentage of the population has it, but just doesn't know it. If we base it on statistics alone, sooner or later you are going to meet someone who has the same status as you. Or, you will meet someone who is so amazing and so in love with you, that it just will not matter. They will love you, and just see the virus as something that comes with you. Until then, see this as an opportunity to truly get to know someone. In my opinion, we really do not know someone fully for 8 months to 1 year. Many of us need to learn the art of dating, and forming a foundation with someone that does not involve sex. Love and light to you!!
  12. I scheduled with midwife for April 24th. The thing about the discharge is that there is no odor, no itching, no burning, etc. It's just there. I don't have any of the symptoms of any of the vaginal issues that come up when you search watery discharge. Who, when it comes to doctors, is considered a herpes specialist? What type of doc would they be? I'm ready to talk to someone who has a lot of background in treating patients who are h+.
  13. P.S. All of my STD screenings beyonds hsv come up negative. No chlamydia for sure. And there is no odor or funk about the discharge. I have read about many women who have the same thing. Surely it's somehow related?
  14. Hi. I am very much on top of my health, and am one of those people who requests many different tests to be run in order to get to the bottom of things. I have a great midwife, who helped me birth my last two children, who has been with me from diagnosis. Every time I see her, we do a whole round of blood work. The only thing that has ever been off was my Vitamin D levels, which are usually less than 5...or non-existent. I supplement myself with Vit D, yet I can't seem to bring it up to normal levels. Recently I found some information on people who have had their gall bladder removed, which I did in 2006. It said that people who lack a gall bladder also lack the ability to absorb fat soluble vitamins such as A, B, and D. Now it all makes sense. My body can not absorb these vitamins, which I believe results in a somewhat weakened immune system. Both my Mom and my Sister have thyroid disease, which I ALWAYS have run in my blood work and it always falls within normal ranges. I read through a huge bunch on info on autoimmune diseases, and I don't have any symptoms of any of them, and I've never had funky blood work with reference to blood cell counts, etc. About five years ago I remember being extremely ill with Epstein Barr Virus, which is a form of herpes, right? I had chicken pox as a child, so I know I carry that herpes form in my body. I also have hsv1 because my parents passed this on when I was a child with all their kissing and loving on me, as does my younger sister. However, she gets cold sores and I never have. I spent some time talking with a friend today who also have both hsv1 and hsv2 in her body, and she told me that whenever she being her prodrome symptoms, she gets the same type of discharge. And, maybe I am exaggerating a bit when I say constant. But, it is bothersome and uncomfortable to say the least. I am getting ready to go in for my annual exam, and perhaps there are further tests I should ask my midwife to run on me? But if I had lupus or MS or any of those things, I would surely have some symptoms?? Also know that I have a high stress life. I am mother to two young boys who literally do nothing but fight, punch, kick, break, scream, cry, and carry on every waking moment. This is not an exaggeration. My life is me yelling and refereeing all day long. It makes me very on edge, and maybe this is part of the issue with many ob's?
  15. I keep reading over and over that up to 80% of our population has the herpes virus. Many are asymptomatic, or many have had it for years and just don't know it. I remember how horrible I felt when I was first diagnosed. It is a hard place to be. Everyone on this site is wonderful, and you are definitely in the right place to find answers and support.
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