Fake Prodrome or Real and Shedding?

Hello, I am new and first time posting, after scanning for about a month. I had some in depth questions that I was hoping Adrial could answer. I apologize for the granluar level questions, but that means that 9 months of relentless research, has turned up no answers for me. Most of my info, I was able to obtain by reading case studies and trials. I also apologize for how personal, I really have no modesty when it cones to medical stuff, so I'm not bothered by it, but others may so I apologize for that up front.

1. my understanding is that we abstain from sexual activity during signs and symptoms. I also am aware that, shedding isn't happening consistently and it has been studied and revealed, that it seems on average, people have more frequent bouts of shedding for a short period (hrs) in a day vs days. So are we to abstain if we have any sensation that day period or some time after the sensation? 

2. Some of us were greatly effected by post herpetic neuralgia and have had constant paresthesia daily since contracting herpes. How do we tell the difference between nerve irritation as described (fake prodrome) above or if it is it legit prodrome and we are contagious? 

3. Most information I'm finding, always seems to have the assumption that people will continue experiencing obs in the same location every time and that's where you should predict your recurrences would be and viral shedding. The only consistent place I've had a sore, is internally on the third day of my cycle. Every recurrence I have had, bumps popped up in new and different locations.  Does this mean I will have shedding all over the place? I have had one bump on each inner labia one time each months ago; however, if I do ever feel a crawly sensation on my genitals, I get them there. So I would assume, that is where I'm shedding, when I get that sensation?

4. The vast majority of my crawling, is on the buttock and back of thighs. Should i take this as paresthesia, from irritation of my nerves or as prodrome?  What does this mean for me spooning? Do I have to assume that I am contagious on back of thighs and buttock during spooning?

5. Why am I always having breakouts in new locations?

6. Are the tampons or the my cycle flow causing my internal sores? Does this mean that is going to happen to me during sex, because the friction of the tampons may be causing the sore?

7. I noticed that member profile pictures are public and while I understand having the information in the posts public, I know I am not comfortable w having a pic of me public. The type of field I am, peers bosses and future employers will no doubt find me, it is the nature of our field. W that said, if someone were to take say a picture of me from fb or where ever and I happened to upload that picture on this site, said nosy person good do a Google image search on me and POW! They know I have herpes! While I love the concept behind having a face to the posts, as iit creates a sense of community, support, openness and the removal of shame and stigmatization, it being public poses the risk of being found out by others possibly. I would like to have my picture up, for all the reasons posted, but only visible to those w IN the community. Have you considered modifying the forum so posts are public, but profile pictures only visible to members?

I apologize for the lengthy post. I would like to say thank you for being such a fearless and courageous person, to create something like this for people. It is very much appreciated, I'm sure you know. Thanks!

Hi

Some of the moderators will come on here and answer your questions. Don't apologize. We all want to be well informed to protect or partners.

Might I suggest scanning the herpes questions on the Westover Heights clinic website. A lot of great information (technical and scientific information) about herpes.

Good luck

Hi whitedasies, thanks so much for stopping in to comment. I have already reviewed that site, thanks so much for the recommendation though! ;-)

Sure. No problem.

I post on there sometimes for my sciencey questions lol. I pay $20 and I have 3 posts to pick Terri Warrens brain. It's a steal!!

Yes she was great, but I was kind of surprised (not sure if it was you), that a member posted concerned about herpes bumps on her buttocks and uploaded a pic. She told the member that it wasn't herpes and were zitszits and this member specifically has rwcurrences on her bottom.. (mind you, these are exactly where I get mine and look EXACTLY the same, they were identically in the same spot on each cheek, close to the crack, as if one would touch the other.. Umm.. Yes.. Spreading) I found that very discerning, as she followed up w saying she's never seen any look like that. I knew right off the back, they were. So that made me a tad weary. I'm very well versed, but these questions seem much harder to nail down, even the studies done of shedding can't answer my questions, so hoping Adrial has some access to resources, I've not managed to find w the answers.

Well atypical is atypical so it's really hard to judge from a pic.

Bumps can be lots of things and their training is to isolate and not draw too many conclusions from a hypothetical. That being said I get that it's frustrating.

Her opinions on shedding and all other scientific information Should be held in high regard despite the fact she can't diagnose lesions that are atypical over the Internet.

Adrial might have some additional resources but honestly not too many studies on ghsv1 unfortunately with us who have that.

I get ya. I was in the knowledge and research phase and I still waver in and out of that. I even ordered pcr swabs from her clinic to swab the bumps. Came back negative!!!!! So I dunno. Honestly this whole thing is a mystery and sometimes there is no "right or exact" answer unfortunately as disturbing as that can be to comprehend.

I don't think that was me te bumps I did upload a pic but I get them on cheeks and tailbone. I am susceptible to eczema and skin issues though

I wish you all the best. I hope you find answers. And when you get them it would be lovely if you could post them to educate us.

Thank you

Hugs

Yes, I could agree w your assessment on that. :-). I have hsv 2 and I had a very severe reaction, like my buttock and back of legs felt like I was a burn victim and couldn't even handle clothing. I had to go to the ER and was put on neurontin (anticonvulsants), as those are the only thing that can treat nerve pain. I couldn't even sit up for two weeks on that and hydricodine! Ouch! I feel like it may have been you, that I read posts regarding constant prodrome and someone else and both had ghsv 1. Well that's EXACTLY what it was and has been like for me, up until just recently and that was w taking meds daily. I had constant pins and needles sensations, like a bug is crawling under my skin (which I really hate this one! It was the hardest one to deal w, because it made me feel like I could picture a parasitic looking bug having a Ho-Down in my sensory nerves), tingling, flutters, burning, numbing.. It was the worst on my buttock and back of thighs, but happens at specific areas on my bits. I feared never feeling normal again and I have gfs who haven't had an ob in a decade or more w no meds and had multiple vaginal births!! It's like nobody else I could find, was experiencing the same thing as me, until this site really. It makes me feel like I am always active and could never disclose the low transmission rates to someone, because I felt like it likely doesn't apply to me. I did go from about having 20or more sensations a day, to maybe 2-3. That has been relatively recent, but gives me hope. I have also discovered that doing any time of strenuous activity outside of an hr HIIT class or weight session, that just doing a mud obstacle run recently and walking in a park for 5hrs, since me into a type of bone tired fatigue I have never experienced in my life. Like I can pass out sitting up, lower limbs become heavy, can sleep 15hrs, still not enough and takes days to not feel so exhuasted. This is new and I know it is H... You have any other symptoms? Thanks for the hug! Sending a bear one back!

U r sweet. I love bear hugs. Yah well maybe it was me.

It has been about 15 months and te severity of sensations are less. The frequency is less but it's still there.

Sad you are in my club gf but at least we are not lonely. Lol.

If I had to tell you all my symptoms it would take days. I was diagnosed w post viral syndrome which happened I believe subsequent to hsv1 so I dot know why symptoms are post viral, what symptoms are prodome and all I have alre these bumps that swab negative and some internal burning which swabs negative so I dunno.

I definitely feel contagious all the time and seriously considering ending things with my hsv- partner. The worry is exhausting.

Yep, this was you then. I had even screen shot the post of you talking about it, because I wanted to reach out to you, once I created an account. Do any if my symptoms sound like what you have? I have this fear, sex is going to be excruciating since I have so many symptoms. Does it feel any different or hurt? Arw you on meds? When I stopped taking meds and started taking a daily probiotic over two mo this ago, is when my symptoms suddenly started to decrease and I've not had an ob on my external bits since, but still get the inside one on that lovely gift us women get to have too. ;-) well he hasn't gotten it and your swabs come back negative, so this leads me to believe it is paresthesia that you are actually experiencing (fake prodrome) and not active Vitus. Do the bumps itch or hurt?

BTW, how did you disclose and him not freak out about getting g herpes, based off your experiences or did you get it from him through oral sex? I feel like I can't be nonchalant about this virus, based off what I went through or I feel like I'd be lying. Of I told a guy what I went through, they'd probably freak out.

Well I believe that herpes damaged my nerves bc now everything feels like a sensation vs an itch or burn or pain. So I think some is prodome and some is neuralgia and I cannot tell what is what so yes this is very scary and I don't believe the stats apply to me no. I believe my partners risk is significantly higher. This is why I ended a sexual relationship with a guy I was seeing at the time despite the fact that I loved him but it's better it ended anyway.

This new guy honestly He was pursuing me and I disclosed to get him off my back. I was still very emotional about everything and wasnt reay for sex even though it was all I could think about. So my disclosure was horrible and likely the scariest disclosure ever. I was orally honest and said I don't know where I have it and I think honestly it's disseminated and I get bumps and pains and burning but I swab and it's negative. I told him I can't keep him safe bc I don't know what an ob is. I knew this man for a long time at a friendship leek so I had history but we weren't the confide in you friends just kind of friends. Anyway he just said well your reaction wasnt te norm right? And I said no it's definitely not. And he said well I have even to this virus before with my other long term partners so I probably have it. So I am not worried. And that was it. I was flabbergasted. I bring it up now and then especially after sexual intimacy or before when I am most nervous. He just says I see you and not the virus. Problem is I hae become this virus bc physical symptoms don't stop. Most times I fce my fear and see him but the sexual remorse afterwards is hard. We had sex a week ago and I am on a countdown to see if he gets anything.

I got the virus actually from a gf of mine. It was a fluke goodbye peck and My last partner when I confided what happened refused to get tested so u dont know if I got it from him. He said he got tested thru life insurance which is ridiculous. Why would life insurance want to know u have herpes especially hsv1. Std clinics here don't even blood test for h.

Anyway I was like you and true I gain all knowledge possible researching etc visited many doctors. No dr ven specialist said it was possible from h. I have given up with dr. Taking matters into own hands w pcr swabs and trying to figure out a way to live with uncertainty.

Good luck

I am here If you have any questions.

@2legit2quit Sorry to hear you're suffering I get nerve pain too 9 months on and it sucks big time! I'm on meds for that but I'm not sure it's doing a heck of a lot. I have started taking 1000mg of Valtrex now daily aswell instead of just 500 and have cut soft drink and energy drinks out of my diet which has helped that tingly crawly feelings in my genitals subside ALOT. That is what worried me most as all of the docs said it was fine to have sex but I don't want to risk it with the tingly feeling even if they say it is just the nerves going haywire! x

So my next question would be for you and @whitedaisies, have you both been taking valtex continuously since your primary? Have you guys ever come off the meds?

My new partner assumes he has hsv1 w no blood test and no cold sores to show for it. I assume he is negative. He has taken no meds and has been quite cavalier about where he sticks his unwrapped pecker. ;-)

I was off valtrex for a whole but have started famvir 2 months ago(500 mg 2 x per day) With some breakthrough symptoms. We have had sex 3 x on one occasion. He performs oral on me regularly for the past month and a half. He has had no symptoms of any kind.

That being said I have only performed oral on him once so his risk from my mouth yo his penis has been minimal. His risk fr my gentitals to his penis has also only occurred one week ago.

Alot of his exposure has been through kissin me with various symptoms and through performing oral on me.

He could e hsv1 positive or not. He wot blood test. He says assume I am positive. I think I may fore his hand to get tested. I think he's worried If he comes up negative I will end it. I dunno. But if he's positive for hsv1 he likely cannot get it from me genitally and then we can go to town and do all the freaky stuff I want!!!!

I am over the lost love and heartbreak. I am over the stigma. I can't get my head around how flukey I am to be one of those that reacted so horribly physically. I want mg old body back or even half of it.

I was on it continually for the first 3 months then stopped for 2 months (I was trying to figure out if it was valtrex causing my pain) but I then had back to back outbreaks and the pain worsened off them so Im back on suppressive since feb :)

Does the nerve pain meds do anything?

Also I have HSV2 so I don't want to risk coming off them when I'm with somebody because of the higher rate of outbreaks + shedding x

Ok so here has been my strategy. I have stopped looking for dr and research to validate anything of what I feeling.

I have chosen to attack the symptoms thru pcr swabs. My theory if they come up negative, I can't be too contagious even if they are h and if I come up positive I will know what symptom matches what.

I have been able to find out thy burning on left side of vag and little pimples are just bacteria pimples and if I have this sensation I don't worry it's h.

Bumps on thigh are likely folliculitis not h

Bumps on bum likely eczema or just irritated pores.

So when I see these things come up now I don't stress.

Next is abdominal bumps and tail bone ones and anal burning.

Once results come back for these I will recognize symptoms as h or not h

It's expensive at $75 a vial but I need to do it so I don't feel constantly contagious and turns out I am not.

So my advice to you is to do that and slowly u will start feelin. More comfortable in ur own skin.

Hugs (bear ones)

Ok lower back and tailbone ache. For 5 hours now bumps on my right butt cheek (2) they look like tiny pink mosquito bites. They will likely swab negative. I don't know what todo anymore. 2 on in one week. Belly button and not butt. Insanity.

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?

@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.

I am tired analyzing.

I did keep diary of symptoms and honestly I did it for a while and have up. It's been 15 moths....what's the point really.

Famvir is good if valtrex doesn't help. I am gonna to ride the last few subscriptions of famvir out and then go on acyclovir .

I am swabbing bumps with pcr. So far everything is negative. After all the negatives I will focus on sensations and swabbing.

I am going to start vitamins again and probiotic and see if it helps.

Thanks for all your kind words.

Havig a rough week

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.