2Legit2Quit

Where are my H+Peeps at in south west Florida!? Tampa/St. Pete/Clearwater/Orlando I didn't find a support group off the support info page for this area and was hoping, maybe we could start our own and pave the way! Somewhere fun to meet over drinks could be fun and if you're under age, no worries! You can still join us and be our DDs!! Haha... I kid! I kid!!! Maybe? Lol.... Give me a holla! 33yr old female, H+ for 9 months.

I didn't find a support group off the support info page for this area and was hoping, maybe we could start our own and pave the way! Somewhere fun to meet over drinks could be fun and if you're under age, no worries! You can still join us and be our DDs!! Haha... I kid! I kid!!! Maybe? Lol.... Give me a holla! 33yr old female, H+ for 9 months.

@sxwa4006 where are you from? Don't hesitate to reach out to me anytime, especially when you're feeling like killing yourself.

Looking for a HBuddy in Tampa or surrounding areas. I'm 33yr old female and I've had H for 9 months now, always a birthday reminder now too! ;-). I am well versed on the virus and can provide great support and will need support in return, especially when the time comes for my first disclosure.

Yeah, as you know from a previous post, I had severe neuropathy on my primary ob for over a month that was debilitating and not bearable w out nerve pain meds.. Always could be worse.. I didn't realize you weren't taking daily suppression. I really think my supplementation routine was the game changer for me.

Dunno... I ask the same thing. I noticed test yesterday when I bent over, it would feel only in my right leg and cheek, as if it was sore ans tight from working out .. Considering I've been laying on the couch and stuffing mY face lately, that would not be a cause...lol..

Well, that brings it back to the question in my first post, fake or real prodrome? Part of me feels it could be fake prodrome, but I noticed when I have an ob, it is more intense. Having fissures I feel it more, but as they are almost gone, I don't feel it as much. I feel it's a possibility that it's active closer to the root ganglia, resulting in inflammation of the nerves there, but our immune system is preventing it from traveling down to the sensory neurons in the epithelial layer in our genitals... Just my hypothesis on that, due to no longer having external genital sores like I used to every month. The ache increases to point of being tender during the 3rd day on my cycle when I have an internal ob. So I would more or less view this has prodrome, based on my experiences.

Just FYI... My pain started as a dull ache... Like riders soreness. Some days I can hardly feel it, unless I out a lot of pressure on the area where your butt bone is, but other days, it feels like a dull ache in the back of my thighs or buttock... Yes.. Dull ache/muscle soreness feeling does happen and does happen w my friend as well.

@JessikaRabbit89 don't feel bad. Mine was so bad, I was like a burn victims and couldn't wear clothing. I work from home and I still took a week off! When I came off sick leave, I was thankful I worked from home, because I still could not sit up, because the nerve pain. Was so bad, even on neurontin for nerve pain. I laid on my side and worked for a second week. J don't k ow what I'd done had I not worked frohome, because I soent probably 8hrs a day in the tub. Hope you're doing better at this point.

During my primary ob, I did have the same thing has you described and it was because I broke out internally.

My first real event after getting herpes was a big party and I'd had it for about a month and a half st that point. I rode w someone who had herpes as well and not long after getting to the party, did pur mutual friend make this herpes joke to a group of us. I laughed it off and looked at my friend to see how she handled it and she had looked to see how I handled it and I quickly changed the direction of the convo. I wish I had the "ballz" to own it that way. I remember sitting at the house of someone I was dating I had not disclosed to yet (too soon) and was dreading the possibility the previews for that movie bad cops or whatever would come on w its tasteless herpes joke. (movie blew you know what too, serves them right) I hated that feeling and knew I'd feel humiliated deep inside and feared if he was going to male a herpes joke too. It also brings up the concern for me, if someone would suddenly ask if I have anything, before I am ready to tell them. I mean, am I to lie at that point and say no, because I am not ready? I dread them laughing... I've read on here others who kept dating someone who kept making herpes jokes and stuck around w them and eventually disclosed... If someone is doing that, I immediately make the decision, they would not accept it and move on.

Unfortunately, they are finding that human herpes viruses are absolutely a trigger to autoimmune diseases such as fibro. If you go to a rheumatologist, one of the main tests they will run, ia testing your EBV antibody count. Apparently it can reactivate and cause many issues. I have two autoimmune diseases... Once I got hsv 2, I started experiencing CFS. My fatigue after a couple hrs of physical activity is debilitating. I will sleep 15hrd and not be the same for days. I Dis not have this until hsv 2. I do have a guy friend who has been sick for yrs and I did a lot of research on his symptoms and that is how I learned so much about the other herpes viruses. I got him in contact w an infectious disease doctor, cause his symptoms were debilitating and he told him, it is your HSV 1 infection orally. He has muscle and joint pain, fatigue, dizziness and he is an athelte. Very fit.. They are uncovering so much regarding the actual havoc HHV's are doing to us silently. They were and have been poorly misunderstood.. HHVs have been linked now to MS and a number of other disorders. We are just at the beginning of learning how much they wreck havoc.... This is just one of many, but this is to give you an idea on new findings... Like hsv 2 never traveled above your waist to other nerves or HSV 1 below your neck.. It is just no true. I don't think it happens in everyone, just in some. I also feel it is a combination of factors, environmental exposure, genetic predisposition and a chronic viral infection. http://simmaronresearch.com/2014/02/michael-vanelzakker-ph-d-talks-vagus-nerve-infection-hypothesis-chronic-fatigue-syndrome-mecfs/

Someone who I thought was my childhood beat friend can't even look me in the face. I font speak of it w shame now. I speak very casually, my progress in symptoms improving, my support forums and research I've done. I speak very objectively about it and as weird as it might sound, passionately about it, as I love reading and learning. I don't talk w shame about it like I Dis in the beginning. I have tried to approach her nicely about this and she avoided me, because I wanted to know why she seems to be so bothered by it, but she avoids me. So I ended our 21yr friendship over it. I ended up giving her a piece of my mind and I did say that she was known for being promiscuous and I was conservative about sleeping w people and I got this and she got off scotch free, so don't she dare judge me, cause it could have been her. Her lack of compassion really shows me her true character. How can I be so wrong about someone after 21yrs?

Read and watch reality trash..lol

@whitedaisies if you had vasculitis, you'd know. I broke out on my extremities, w these little red bumps that would itch first and if I scratched it w my nail, it would pop like a blood blister and have a little blood and then heal. It was weird. It hasn't happened to me since September though and I got this in July. Do you have any other symptoms going on outside of herpes and before you got it? It makes me question if you had underlying issues. CFS, aka post viral syndrome can often be triggered by getting another viral infection and it makes the perfect storm. We have about half of the herpes viruses dormant in us by the time we are adults. Have you seen a rheumatologist? If not, I'd suggest going and having them run a test. They will also test to see if your antibody count is high for EBV and/or CMV to see if you had reactivation. I know being in the misfits isn't our first choice, but I do believe it can get better. Not sure about your life style choices, but things have really turned around for me. I only itched once today in one of the two spots I have occasional itching and I've had NO nerve symptoms today. This is a first for me since getting this.

So they biopsied them? Have you gone to a dermatologist? A pap test for a completely different strain of HPV, than the ones that cause genital warts. They are swabbing for high risk strains which cause cancer on the cervix. Low risk strains of HPV are genital warts and that's not what your pap is for. What specialists have you had look at them? How long have they been there?

Well, I asked what they looked like, because I wondered have you considered the possibility that they could be HPV?

Well headaches are well documented from herpes and even meningitis, so I believe it can go anywhere. There is evidence that hsv has gone in other ganglias spread through out the body, from autopsies. I had severe neuropathy to the point of feeing like a burn victim on my buttock and back of thighs, w shooting electrical pains to my feet, inside my rectum, vagina and location of sores. I had to go to the ER I was in such bad shape and be placed on neurontin. Don't let anyone tell you it's not, this is why it isn't being recorded by doctors like it should, because they are blowing the patients off and the patients don't push back. I even developed mild small vessel vasculitis during my first ob and if I missed a pill the first couple months, it would pop back up. My rheumatologist argued w me that it couldn't be vasculitis and if it was, it was caused by the medicine. I asked how is that possible if I got it if I missed a pill and then taking them would make them stop popping up. Small vessel vasculitis can happen just from your body's immune system freaking out... Which me having sjogrens and thyroid failure as well, makes that a very plausible explanation. I believe you have to find younger doctors to get them to listen more and learn from the patient and not just the text book. Infectious disease doctors are best to go to as well and will tell you this is herpes doing this. As a result of telling my rheumatologist about the neuropathy, she diagnosed me w fibromylgia.... That's just utter bull shit and I do not have fibromylgia. That's cause her old crotchety ass, didn't want to listen to her patient and believe it was the herpes and said only shingles does that.. Yes... A virus in the Alpha Human Herpes group like HSV 1 & 2, because all three hang out in ganglias and behave very much the same way .. Doesn't take a rocket scientist to recognize, that it is plausible I know this is going to sound crazy, but I know it's herpes. A few months ago I started running again and after some time, I started to feel this pain that started in the back, on the spine and then did a straight line like a laser through to my breasts to my nipples.. As I continued running, the burning increased w intensity and it was on both sides and only after stopping, did it take some time to subside. I would never tell a doctor that.. I don't have any issues w my back and this has only happened since I got herpes. I also as of recent during an ob, started having intense itching on the front of my left shin, until I broke skin and made myself bleed. It was like this for the duration of my ob. I also had the same thing on my lower left back, both sides of hips and right shoulder blade. There was nothing there..no skin rash..no reason for this intense pinching itch and I broke skin all five ocations and scratched up my arms just a little. Looked like a cat attacked me. I am positive it is from herpes. I think some people's nerves are much more irritated by the virus than others. I have a theory that it also may not be the virus, so much as a result of having the virus and our immune system attacking infected sensory nerves and continually doing so, even after the virus has gone back to the ganglia. Kind of like our immune system is in over drive and that's very true for me, as someone who has two autoimmune diseases. Since getting hsv 2, I have a type of fatigue I've never experienced before.. This is a symptom of an immune system in over drive and the worse your immune system is in over drive, the worse your symptoms will be. If either of you have neuropathy that makes life hard to do just daily tasks, get put on nerve pain meds. Just my two cents. Not sure what you're googling, but if you get creative w wording, you can find publication's of neuropathy caused by hsv 2 Reading about the other 8 HHV taught me a lot more about HSV and how it effects the body. http://www.ncbi.nlm.nih.gov/pubmed/11551239 http://simmaronresearch.com/2014/02/michael-vanelzakker-ph-d-talks-vagus-nerve-infection-hypothesis-chronic-fatigue-syndrome-mecfs/

Don't feel bad! I've not ever had one friend know this over the course of yrs I've been preaching it... Before I got H that is too. Females seemed shocked by it and a little scared, men... Well... I've had a few strange reactions by men as follows: "Do you have herpes!!??" I ask because how do you know so much!?" They say this very accusatory as well. "Condoms do too provide protection. Why are you even bringing this up?"... I've have been given dirty looks, I have been dismissed and have had anger directed at me, because how dare I ruin their blissful ignorance and have bow forced them to have a conscious about it. So I am surprised so many say that and like @serendipity515 said, it absolutely is victim shaming and they should be ashamed of themselves. That is also a sense of entitlement and it would never happen to them. Sorry you had to deal w that. I have learned, I will not be telling any other frienda, than whom I've already shared w and it is because half were bad reactions towards me.

@WCSDancer2010 thanks so much! I do hope @whitedaisies doesn't cheat herself out of something good and while I do understand, because I have had moments of thinking the same way and I'm sure I will struggle when the time comes, but I will have to remember not to project my experience onto others either. In fact, I tend to be a habitual projector in many areas of my life. One thing I have learned is, herpes had put a magnifying glass on my prior low self-esteem and insecurities... It is very easy to think it is all the herpes, but it is not, it was there before herpes, herpes just made me realize just how bad it was and how much in need I am of self love and acceptance. Until I resolve these issues, I will not stop projecting any of them and certainly not the herpea either. At the core of rejecting a H- partner, is us not feeling we are deserving of them to start, but w out H we may have overlooked that is how we feel. W H, it magnifies the feeling, because you not only feel not deserving, but also feel that you aren't worth the risk. Work on finding that self love, hell I will even join you on that journey, because I need it.

A live culture probiotic that has a coating to get passed your stomach acid was the biggest change for me in making almost all nerve symptoms go away, after adding it to my daily doses of vitamins. I take about 3xa the daily dose or more in C, D, Bs and zinc and magnesium. Most Americans are severely deficient in these and are needed for nerve health, especially the the D and all Bs. To really get what you need from the B complex, it is best to get it by shots w thiamine. Thiamine really only comes in liquid form and only way it can truly be absorbed. W out it, your other Bs are almost useless. Taking enough Bs until yiu get a niacin flush, will tell you how much you need for your body. We use all these vitamins more due to infection. Bs Ares specially needed for repair of nerve sheaths that have been damaged, which causes much misfiring of nerves.you can get like 4 B shots w thiamine for like 25-50 dollars at clinics. One a week should suffice. When we are defincient of anything, it depletes something else, which then causes depletion in other areas. There is a difference between the daily recommended dose, which is minimum and then how much you really need.

OMFG!?? I CANNOT BEGIN TO TELL YOU THE RELIEF I HAVE HEARING OTHERS HAVE THE STRANGE SYMPTOMS LIKE ME!! I took great pleasure announcing to the friend today who told me maybe it was all in my head, that I have found others going through the same things as me! When I told my GP, she speaks out loud as she writes, depressed. I told her I wasn't depressed at that time! My rheumatologist added fibromylgia I feel to my blood diagnosed autoimmune disorders, because of the symptoms I described from my primary ob and residual symptoms after!! She told me only shingles acts like that! Yes, shingles who is in the same alpha family as HSV 1 & 2,, because all 3 are so similar than the other 5 human herpes viruses, that it couldn't be plausible people could experience post herpetic neuralgia and itch!? I am beside myself on how ignorant the medical community is!! Try listening to your patients a$$holes, you might actually learn something! Welcome @sil88 ! Please join the Island of Herp Misfits! (All in good fun of course.. Gotta laugh at what you can't control!) Hahaha! I laughed pretty good @whitedaisies at your welcoming statement! Lmao! I'm just so relieved to not feel alone in what has happened to me. I really do believe the probiotic and other supplements I take at high doses, which are all required to repair the sheathing on the sensory nerves, has helped tremendously! Actually, being on this other forum I was on, I was able to find more people are experiencing nerve issues, but they don't link it to their ob and/or they are mentioning it to their doctors (GPs are the worst offenders on this, and docs in Europe seem to have the most outdated medical knowledge on the virus) who blow them off and day that would have nothing to do w herpes, so naïve patients don't push it, as they are under a lot of stress and it is being under recorded.

Yeah, I hear ya. I could see it get tiring. I'm super neurotic, so for me it alleviates anxiety to analyze it, but I've also not had it as long as you. I think you're taking all the right steps though. I have myself read studies that acyclovir is supposed to be better than valtrex as well. I've been thinking about trying it myself. Have you noticed if you are more fatigue now, since getting herpes? . Not glad you're going through this, but I'm glad I finally have two people I can relate to. My for ends who have it don't get it and don't seem to wanna talk about it. I think they have had it for a decade or more and how Kong it's been since they had outbreaks, that they just want to forget they have it. Now I don't feel so crazy.

@whitedasiesz you have figures out your true prodrome. It is lower back ache and burning tailbone.. My tailbone was on fire sueint myast ob for about 15mins, then it was just highly sensitive touching the skin there. The other sensations are likely just neuralgia.

Sorry, been at dentistdentist, so that's why it is taking me so long to reply. I asked about the meds, because I started to question if it was the meds causing it too.o was on another forum and a girl who said she had no obs or symptoms since getting it, suddenly was itching constantly and having symptoms. I dosed up to 1000 a day for valtrex and still had a bump once or twice a mont, along w all the crazy sensations. I started taking a daily live culture probiotic, high doses of vitamin C, D, Bs and zinc and I didn't break out for the first time ever in a month. So I stopped meds and symptoms stopped almost completely. I no longer break out on my external bits, just itchy bumps twice on butt cheeks that goes away in a couple days. I started taking valtrex again, because I had fissures that wouldn't go away on my bum and those are almost healed. That first month off, I got swollen lymph nodes in my groinalike my primary ob and I jiay wanted to see what mu body would do on its own w out meds. It never did breakout on my pocket, but did on cheeks, which was a first. I almost feel like stopping the meds did a reset on my body. As if my immune system had to figure it out itself ans then my symptoms subsided. You have to load up on B complexes and vit D to repair and protect the nerves. I believe the sensory nerves sheathing ia getting destroyed by our own immune system attacking the infected nerves and kind of not stopping, even when the virus has gone back up in the ganglia and the reason for the continued nerve sensations. I read studies that state famvcoir or whatever it is you're taking ia useless and sis nothing to stop shedding or obs. The other two are supposed to be effective. The nerve pain meds absolutely did take my pain away, but side effects suck on it. When I read the side effects after being on it a week and it said not just weight gain, but RAPID weight gain! I was like: ABORT! ABORT! MUST STOP TAKING NOW! Lol... I tried, but it hurt still. I really feel the probiotic is what made that huge shift for me.. 70% of our immune system is in our gut. @whitedasies, I understand not wanting to pass this to your partner, because you associate the experience of this as hell and that is how you identify the experience. You two are the only ones that have had it for more than two months, that are experiencing what I am as well. So that is a clear indicator z we are the exception, nor the rule. The fact he wants so bad to have it and doesn't care says a lot. I do not think you should break up w him. You cannot project your experience onto him, as if that will be his experience too. Men doesn't have a quarter of the hell we go through, so stop worrying so mu j. While I think it is admirable, you can't deny yourself love or make decisions for another grown adult. I really do think it is fake prodrome. .have you journaled your daily symptoms, so you coukd determine after some analysis, what is possibly real prodrome or fake prodrome? I have and because of that, I feel more confident about myself than previously. I actually for the first time ever, believe that one day I'm going to feel normal again. I know how you feel too about your body reaching so crazy... I had a friend ask me rudely if maybe this was all in my head, because why would this happen to me and not everyone else. I was like yes! Yes, I'm making this up, because I looovvee paying medical bills and feeling humiliated! I want my energy back.. I'm exhuasted all the time now. Just going to the dentist for a few hrs, has me depleted. Bear hugs ladies! We can be the Land of Herpes Misfits together, because nobody else w H can relate ans get through this! I believe we will eventually figure something out. @Danaaaaaasaur , what does your pain feel like and where?