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My long ongoing saga with G-HSV1 atypical symptoms, please come and listen, advice and help needed


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I am sorry you are struggling with this. I am in the exact same boat at two years in. It's very frustrating. I can totally empathize with you.

 

Viruses can trigger autoimmune stuff and also vasculitis which could be the red dots on your penis. I get those between my thighs sometimes if I have prodome.

 

How long did you try the double dose of valtrex. Give it at least a month or two.

 

Thank you, i appreciate it. 2 years is a long time im sorry you also have to go through this. I keep hoping its only temporary and that i will "heal" and only have normal hsv symptoms eventually. But in the back of my mind i doubt this is true, im probably fucked for the rest of my life to live miserably.

 

None of the doctors seem to think HSV can cause vasculitis which i believe I do have now thanks to the wonderful HSV. My penis is noticably colder at times, and the veins do look different, as well as all the red and purple dots under the skin.

 

ive been doing it for about a week, but he didnt give me a scrip for more, so i will run out of my monthly supply if i do it for too long. i might call and see if he will write me a 2nd script for another 1g monthly.

 

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I seriously would push to do it longer. I noticed a difference after a month when I doibled up. I still had symptoms but the burn went away.

 

I am better after two years so there is hope for you. I just have frequent prodome and ob which never have fluid only red bumps and sometimes vasculitis.

 

PM me if you need any support or we could use this thread.

 

You will get better over time. It may just take a longer time than most.

 

May I ask are you having sex and have you passed this on? I think you mentioned ur gf had oral hsv1. Assuming she has oral, I assume she can't get it fenital. Just wondering. With my constant issues, transmission is such a big worry for me.

 

Hugs!!!!

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I seriously would push to do it longer. I noticed a difference after a month when I doibled up. I still had symptoms but the burn went away.

 

I am better after two years so there is hope for you. I just have frequent prodome and ob which never have fluid only red bumps and sometimes vasculitis.

 

PM me if you need any support or we could use this thread.

 

You will get better over time. It may just take a longer time than most.

 

May I ask are you having sex and have you passed this on? I think you mentioned ur gf had oral hsv1. Assuming she has oral, I assume she can't get it fenital. Just wondering. With my constant issues, transmission is such a big worry for me.

 

Hugs!!!!

 

I'll call him tomorrow and see what i can do.

 

Did you have the redness and irritation like i do? How long before it went away?

 

I havent had sex in a year sadly, since this started. Mainly because im constantly irritated and uncomfortable. Sex is a distant fond memory at this point...lol

 

I dont have any sores, or open wounds, just barely noticeable pink/redness so i dont think its easily spread. I think my nerves/skin/veins are just irritated in a constant state for whatever horrible reason. I think if youre on suppresive therapy i would say the risk is as low as it can be, and further reduced if you use condoms.

 

Thank you for the hugs and support, i needed it. :)

 

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Well then lots of hugs for you!!! I get really down too some days (ok a lot of days).

 

Someone on here thought he had ghsv1 too and it turned out to be prostatis I believe and a bacterial infection. See if you can search under Frenchman. See if it is similar.

 

I went a year and a half without sex and then couldn't wait any longer. But sex always gives me anxiety before and after. In the moment I am okay. But I haven't had much I am afraid. Fond memory for me too lol. Let's hope it won't be too distant for much longer.

 

I would say after a year I noticed a difference. The constant burn of my nerves was gone. And then just appeared frequently during prodome and then goes away.

 

Now I will get prodome and then red bumps. Tiny that barely break through the skin. Mostly show up on my left thigh and lower back. Nothing on my vagina. Yippee!!! Although I get some nerve pain there.

 

Do you go commando as much as you can to avoid any rubbing or further irritation?

 

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I highly recommend maybe going to a pain management doctor and explain your issue, but don't say hsv1, just say genital herpes. Also state that your good friend had severe nerve pain too and was prescribed Neurontin and it helped. ask them for one that has less side effects, than Neurontin.. Lyrica may be better than Neurontin.. Where is your burning again? You coukd even say you're just having nerve pain w a pain management doc and not even mention the herpes altogether.

 

In regards to red dots, I've had those on all my extremitiesextremities for mo ths after my first OB and every time I'd miss my daily dose. A yr and 3 months later, I almost never get them now, but a couple has popped up here and there and of course my rheumatologist didn't believe me it was small vessel vasculitis, but I believe it was w out doubt, as I had a friend have the same thing happen to him from HSV and has psoriasis...

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Well then lots of hugs for you!!! I get really down too some days (ok a lot of days).

 

Someone on here thought he had ghsv1 too and it turned out to be prostatis I believe and a bacterial infection. See if you can search under Frenchman. See if it is similar.

 

I went a year and a half without sex and then couldn't wait any longer. But sex always gives me anxiety before and after. In the moment I am okay. But I haven't had much I am afraid. Fond memory for me too lol. Let's hope it won't be too distant for much longer.

 

I would say after a year I noticed a difference. The constant burn of my nerves was gone. And then just appeared frequently during prodome and then goes away.

 

Now I will get prodome and then red bumps. Tiny that barely break through the skin. Mostly show up on my left thigh and lower back. Nothing on my vagina. Yippee!!! Although I get some nerve pain there.

 

Do you go commando as much as you can to avoid any rubbing or further irritation?

 

Thank you!! Hugz Hugz!!

 

I tried searching frenchman and found a bunch of threads, but none of them said what the final result was. One of the Urologist Dr's checked my prostate, and said it felt normal, though it did cause a jolting pain when he poked it. I was put on flomax and a course of cipro, neither helped.

 

I wear loose boxers and buy one-two size larger pants so i have more room in the crotch area

 

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I highly recommend maybe going to a pain management doctor and explain your issue, but don't say hsv1, just say genital herpes. Also state that your good friend had severe nerve pain too and was prescribed Neurontin and it helped. ask them for one that has less side effects, than Neurontin.. Lyrica may be better than Neurontin.. Where is your burning again? You coukd even say you're just having nerve pain w a pain management doc and not even mention the herpes altogether.

 

In regards to red dots, I've had those on all my extremitiesextremities for mo ths after my first OB and every time I'd miss my daily dose. A yr and 3 months later, I almost never get them now, but a couple has popped up here and there and of course my rheumatologist didn't believe me it was small vessel vasculitis, but I believe it was w out doubt, as I had a friend have the same thing happen to him from HSV and has psoriasis...

 

I'll see if i can find a pain managment dr and try that. I dont like the listing of side effects for lyrica, but maybe there is something else available. I have a dull aching pain which has seemed to be less frequent lately. However now i get a pulsing burning electric type feeling from my crotch/butt region down to the ball of my right foot

 

I do have eczema and had seborrhea as a kid/teen so i dont know if the hsv is causing more havoc because of it. I've very familiar with both, and neither is whats going on with my penis, plus i tried the medications you would use for that anyways. It just made it worse and more irritated, and even seemed to spread it a little.

 

My red/purple dots are still in the same spots unchanged, the redness still unchanged, it doesnt seem to get better, its all just there constantly

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If you have eczema, you have autoimmune issues and hearing that makes me even less surprised you have atypical symptoms like myself. My neuropathy made me feel like a burn victim.. I only took that med, because I felt like a burn victim. I was withering in pain.. I do have a constant dull ache, some days more than others, but mostly on hard surfaces I feel it. This is not the type of pain I'd get on those meds w. Listen, the side effects for me were worth it for me, I couldn't function when I had that nerve pain. Felt like a million fire ants were hitting me under my skin on my butt Bone's, back of thighs and w electrical shock pain shooting to places you don't want to know, all locations of 22 external sores and to my feet. Unless you are having your quality of life greatly effected by it, I wouldn't bother. It's all relative to their person.

 

Do you take any steroids for your condition?

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Can you tell me what your blood test scores were please?

 

I had trouble with mine so I could never prove seroconversion. For example, I always show negative on Elisa hsv blood tests. I only show positive on inmunoblot or western blot blood tests.

 

Wondered if you had the same issue. I know you said you took them at different labs but do u know what type of hsv blood tests they were and what the score was?

 

Thanks for the hugs!!! I need them too.

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If you have eczema, you have autoimmune issues and hearing that makes me even less surprised you have atypical symptoms like myself. My neuropathy made me feel like a burn victim.. I only took that med, because I felt like a burn victim. I was withering in pain.. I do have a constant dull ache, some days more than others, but mostly on hard surfaces I feel it. This is not the type of pain I'd get on those meds w. Listen, the side effects for me were worth it for me, I couldn't function when I had that nerve pain. Felt like a million fire ants were hitting me under my skin on my butt Bone's, back of thighs and w electrical shock pain shooting to places you don't want to know, all locations of 22 external sores and to my feet. Unless you are having your quality of life greatly effected by it, I wouldn't bother. It's all relative to their person.

 

Do you take any steroids for your condition?

 

Thats horrible about your neuropathy, im so sorry you had/have to deal with that :(

 

Just some corticosteriod creams, i usually dont use them. My eczema was very mild, any pretty infrequent, maybe a couple times a year. I usually only get small patches in my ears, elbow, wrist, sometimes on the shaft of my penis.

 

I tried a few different creams for 2 weeks at a time, and it made it more red, sore, and irritated. Were as on the eczema patches it didnt bother me at all, and made it go away in a few days.

 

 

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Can you tell me what your blood test scores were please?

 

I had trouble with mine so I could never prove seroconversion. For example, I always show negative on Elisa hsv blood tests. I only show positive on inmunoblot or western blot blood tests.

 

Wondered if you had the same issue. I know you said you took them at different labs but do u know what type of hsv blood tests they were and what the score was?

 

Thanks for the hugs!!! I need them too.

 

HUGS HUGS!! :)

 

I tested at HSV1 2.0, over .9 is +

HSV2 was .2 over .9 is + so i was negative.

It was the herpes select test, igg antibody. This was about 7 month post exposure.

 

 

 

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I have mild eczema as well

 

Antivirals don't seem to help much

 

I have constant ob and prodome but thank god I don't get typical sores just red bumps on legs back and bum. Only one or two at a time. I doubt they are very contagious at all

 

But the nerve pain is excruciating and a mind fuck for sure

 

Really hoping someone comes up with something

 

Just ended it with fwb and now just feeling so hopeless and sexually frustrated. I just can't go out again and keep doing this. I don't want to go on an exclusive h website (don't even know if ghsv1 would be there or if it's more for hsv2) but my symptoms are so frequent I really am just struggling.

 

Anyway bad day today. Sorry didn't mean to hijack thread

 

It's been two years of total frustration and sadness and I get out and go back in. I don't like my body. It makes me mad I can't have herpes like everyone else and then not even having meds that work for me on top of that

 

 

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What kind of nerve pain do you get? I really hope so too, this really sucks.

 

Awww im sorry :( Well extra hugs for you!!! I understand the hopelessness and sexual frustration. Its a very tough thing to deal with, i feel like my sexuality was stolen from me.

 

Its ok youre not hijacking. I hope your day gets better, maybe have a glass of wine or two ;)

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Used to be constant burning pain. Now just different pain it's never consistent. I will have bone ache pain in legs or bum. Or burning pain on my vagina. Or nerve pain down to my toes. Or sometimes just itchiness before bumps come.

 

I just started embracing my sexuality at 40 after a sexless marriage and then first partner after ghsv1. I only had at that time two sexual partners!!!! Wtf!? And then to get it like this!?!?

 

It's just so sad.

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Used to be constant burning pain. Now just different pain it's never consistent. I will have bone ache pain in legs or bum. Or burning pain on my vagina. Or nerve pain down to my toes. Or sometimes just itchiness before bumps come.

 

I just started embracing my sexuality at 40 after a sexless marriage and then first partner after ghsv1. I only had at that time two sexual partners!!!! Wtf!? And then to get it like this!?!?

 

It's just so sad.

 

That sucks im sorry :( I get a pulsating burning what i would call nerve type pain running from my groin to the ball of my foot. For some odd reason my right shoulder has started to get what i would say is arthritis, its a sore dull ache if i sleep on that side. Also my left foot is now acting up with the same arthritic type pain, the sole of my foot gets sore after standing if i was siting for long periods. After walking for a bit it "loosens up" and seems to go away.

 

Just alot of weird shit that never happened to me before all of this

 

That is really sad im sorry, more hugs to you. I hate that, it sometime makes you feel like god is giving you the middle finger...lol

 

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Thanks for the apology. Lol that made me laugh...former good lovers. I needed a chuckle. Hopefully you won't be former too much longer. Hope things settle for you.

 

I know. It's so pathetic!!!! I can't even stand thinking about it.

 

I was always comfortable pleasing the man and I guess my husband never really cared to determine if he pleased me. Then my first lover after that I think wasn't very talented.

 

Actually got my first orgasm after h. And another good thing about h, watched a lot of porn and now I have built up my repertoire lol.

 

Anyway I just feel my sexuality has been robbed. I can't just go out...I got to be prepared to have the talk and then on top of that I got to constantly worry about transmission. What's the point?!

 

Btw hwrpes can trigger rheumatoid arthritis. You can get a blood test to determine if you are predisposed for it. Maybe that's what's happening to you.

 

 

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Thanks for the apology. Lol that made me laugh...former good lovers. I needed a chuckle. Hopefully you won't be former too much longer. Hope things settle for you.

 

I know. It's so pathetic!!!! I can't even stand thinking about it.

 

I was always comfortable pleasing the man and I guess my husband never really cared to determine if he pleased me. Then my first lover after that I think wasn't very talented.

 

Actually got my first orgasm after h. And another good thing about h, watched a lot of porn and now I have built up my repertoire lol.

 

Anyway I just feel my sexuality has been robbed. I can't just go out...I got to be prepared to have the talk and then on top of that I got to constantly worry about transmission. What's the point?!

 

Btw hwrpes can trigger rheumatoid arthritis. You can get a blood test to determine if you are predisposed for it. Maybe that's what's happening to you.

 

 

Good im glad i made you laugh :) I know its very hard, Hopefully we will get better as time goes on. I just keep praying and i not really religious, that i will get a break and things will slowly go back more towards normal. I have a feeling i will have some permanent issues unfortunately. I hope for both of us, that our issues will lessen over time.

 

Ah i wouldnt be surprised, it seems to have triggered everything. I used to get seborrhea/eczema in my ears as a kid, and now i have it again at 37 thanks to H i believe.

 

Best part about arthritis is all the meds for it probably make H worse...lol But at this point i would take out breaks every month if it got rid of my other issues.

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Thanks. Nothing seems to work for long.

 

If I as asymptomatic or got an ob here and there....I have done enough personal work that it would be easier to pick myself up and dust myself off especially since hsv1 is so common. But to get it like this? It's jusy horrible.

 

Pain is less and symptoms are less but frequent ob and prodome are a mind fuck

 

No matter how much personal work I do. It's still there everyday

 

I love music and watching comedians in cars drinking coffee. Maybe I will start watching again.

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Yeah don't use steroid cream in your penis.

 

I will say and not w intent, I recently haven't been drinking my usual daily large coffee w a turbo shot (shit of espresso in it) and I feel things may have calmed down some removing that. I was just having constant obs on my butt cheeks, but I did show slight redness in my groin crease, while not really drinking that every morning .. So not completely gone, but more than it has been. I am wondering if it's a coincidence or if coffee was playing a role.

 

I highly recommend you see an endocrinologist or rheumatologist to the St for autoimmune disease's.. Where you have one, you have others usually.

 

I've heard others say they've experienced knee pain w H and I had that for the first time ever last week.. It was weird, but it coincided w itching and redness in my groin crease, so I knew it was H.

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