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AdventureNoMore

Rant of an atypical sufferer---typical sufferers read and learn!

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AdventureNoMore

The following is a rant. Normally, I would go back through such a writing to polish it to a presentable sheen. I detest cursing and incomplete/rambling thoughts. My investigative and researcher sides want to use upper level vocabulary, grammar and syntax. BUT right now….I don’t give a shit!

I am so frustrated, so angry, so DEPRESSED. I hear so many people say, even on this site, this is no big deal, it’s only a skin condition, it doesn’t control one’s life, don’t think of it often, it’s a just an irritant, it gets better, atypical reactions are a minority, it’s a STD/STI, blah balh blah.

It isn’t just an STD/STI!!! Oh, one may contract it WHEN having sex but not because of having sex as well as contracting because of sex. Then there are those like me……contracting it without any sexual involvement.

This fucking disease is a NOT a skin disease---it is a nerve disease spread through skin contact and manifesting symptoms on the skin…anyone can contract it in a number of different skin contact situations. And infection can occur anywhere on the body. I speculate there are MILLIONS of us out here contracting this shitty thing without any kind of sexual action (it doesn’t really matter if it’s sexual or not…. it’s the stigma attached because the CDC, other agencies, and "learned experts" deemed it an STD/STI---which perpetuates the stigma)

Even though we carry anti-bodies, we are NOT protected from infection to other parts of the body. Sadly, we can cross-infect ourselves to other parts of the body. This happened to me. I have spread HSV2 to my face. I’m now afraid to scratch anywhere and then touch myself anywhere else on my exposed skin. (So, now I sleep fully clothed) I speculate there are millions of us for whom this has happened.

Because of that, I have not purposefully touched another human for MONTHS and MONTHS. I have many grandchildren-----I won’t touch them, adult children----won’t touch, parents, siblings, extended family, friends, students….etc. won’t touch. I am surrounded by the love of family and friends BUT even so IT IS LONELY!!!!

Does it get better? For millions of us, yes millions of us who are atypical, it does not.

I was once a warrior, a law enforcement officer, R&D scientist/researcher and am now a teacher and I’m crying as I write this rant…because it has not gotten better----it has gotten much much much worse.

Initial symptom was nondescript and was misdiagnosed, subsequent obs (recognize now that’s what they were) looked like a pimple now and then. NOW 18 months later, oh my God, for 7 months, Obs are constant---yes CONSTANT. This disease, which was once seen as only a "pimple" now and then, now covers most of the penis and upper pelvic area and has now started manifesting itself between one leg and the scrotum. (and as mentioned above is now on my face)

Before anyone starts asking, I am otherwise HEALTY, EAT HEALTY and am in GREAT PHYSICAL SHAPE. And except for this crappy infliction have a full rich life with many friends spread around the world and more importantly a family that is NOT dysfunctional (yep, ya read it correctly NOT dysfunctional) Do I want to go over everything I’ve tired from prescription meds to "holistic" intervention?…nope. Let's just say thousands of dollars and hundreds of hours.

It DOES control my life and would anyone else’s if they have the reactions I do. It pisses me off to see those of us on here write all positive shit. More than likely those of us writing like that are not atypical and can afford the luxury of not having it foremost in their thinking. For the millions of us atypical folks, how can it not be the most thought about part of our lives. IT IS ALWAYS THERE---THE BLISTERS---THE ITCHING----THE PAIN---THE THOUGHT OF SPREADING IT TO OTHERS AS WELL AS CROSS-INFECTING OURSELVES-----ALWAYS.

Knowing what I know now, I wish those of us giving advise to non-hsv and hsv positive folks alike would STOP painting this dreadful disease as an "irritate." There are MILLIONS of us for whom it isn’t. And one cannot predict who will be atypical.

Fear factor and the hard core truth. If a person is HSV infected and is asymptomatic he/she doesn’t have a clue as to where the infection resides nor the extent of the infection. Even if a person experiences symptomatic OHSV it should not nor does not mean he/she does not have it genitally and vice-versa. Once infected, the host, may or may not be symptomatic and if symptomatic in one infected zone, he/she may or may not be symptomatic in another infected zone.

Because of what was stated in the above paragraph, sadly, if one is infected, then one MUST ASSUME one is infected all over. There are NO simple tests to narrow which DRG is infected or how many DRGs are infected---sure, one may speculate, postulated or even decree which or how many but one DOES NOT KNOW.

One could be shedding on a shoulder, hip, foot, finger, palm chin, calf…etc. Hopefully, soon there will be a test to determine the exact location of infection. But right now, seems all sights are focused on prophylactic/cure/treatment (which is FANTASTIC ---cure…. fingers crossed) rather than on site infection determination.

Again, knowing what I know now and experiencing what I am experiencing now…the gamble is not worth it. One never knows who will be atypical. I would never play Russian Roulette with the well being of others especially my loved ones!!

The consequence of not "playing", as stated above, is no human skin to skin touch!!! OH MY GOD I MISS HUMAN TOUCH!!!!!!! Weeping again…I miss picking up my grandchildren, blowing on their bellies, tickling them, kissing them……holding and kissing my children, parents, extended family and friends. And OMG do I ever miss having an intimated partner!!!!.

YES I am acutely aware of perceptiveness. Example is the old Russian proverb stating "I cried because I had no shoes until I saw a man who had no feet." This does not make it better! And yes, I DO count my many, many blessings. And here’s the but, BUT…..Oh, my God!!! Enough already. Please, please enough already!!!

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gingeread

I'm so sorry it sucks so badly for you.

And I know this may not be what you want to hear... but my experience was that the more I freaked out about it, the more emotional stress I put myself under with the shame, the anxiety, the depression, the worry, the worse I broke out. The truth is that they - doctors, the medical establishment, the research community - doesn't know a damn thing about it. I was asymptomatic for YEARS until the emotional trauma of my separation and subsequent divorce threw me into an tailspin, which this diagnosis only made worse. Why would someone who had no symptoms go from being perfectly fine to an outbreak once every couple of weeks, sometimes outbreaks on top of outbreaks? How I was feeling was the only difference and... it makes sense. The virus lives on your nerves, your central nervous system is directly linked into your brain, anxiety depresses the immune system... It's all connected. As hard as it is, and even if nothing changes, when you're in the kind of emotional pain that you're experiencing right now, you suffer twice over - the thing and then the feelings about the thing. Meditate, yoga, pray, whatever you do to ground yourself. I know, I know, it's the worst possible thing to say but it's also inescapably true: you don't have any choice in what happens to you most of the time but you always have a choice in how you react to it. I'm not preaching sunshine and glitter, just a little neutrality from which to observe and find a little peace.

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Cymenthy

I am so sorry for your pain, and I guess I am one of those who tries to "put a pretty face" on this virus. I do it because it is the only way I can cope. It is the only way I can face knowing that I will have this the rest of my life. As long as I take my Valtrex, I have no problems. I do not feel dirty, and don't avoid telling anyone because I am ashamed. I avoid telling because of how I would be perceived by others, and that is very sad.

I am curious about one thing. In what ways is herpes spread aside from the usually accepted methods? I got mine from someone who had had a cold sore years and years before. He had no idea cold sores are herpes, and did not know he was contagious. I have heard that oral herpes can be transferred to the eyes, and how important it is to keep your hands clean to avoid this from happening. I have also heard of a condition on the hands. I disremember the name of that. I have heard of people with herpes inside their bodies and on their faces.

You say there are millions of people who are atypical and suffer as you do. I have never heard of a situation like yours, and would never belittle your suffering. I would be interested to know some of the ways other than sexual that herpes is spread. I know kissing during an outbreak or when there is shedding can transfer oral herpes. I do not think people are being insensitive, I think they just have never been informed of a condition like yours. There are people on here who put a good face on the situation because this virus seems to react to stress, and we are trying to help people deal with it without the added stress which will only make the symptoms worse. For many of us, things do get better as we learn to deal with the virus. Maybe I am atypical in that foods do not affect me, nor does stress.

The sad fact is that this virus will be in our bodies forever unless a cure is found, and the only way to survive and stay emotionally healthy is to accept that and learn to deal with it. I do not claim to be in the same degree of physical and emotional pain as you are, and cannot claim to understand how you feel, but I would like to understand and learn. I would like to hear from more atypical individuals. Maybe they have found ways to cope and could help each other, and help us to better relate to them.

Whether you choose to keep reading and communicating is up to you, but I hope you do. I do hope things get better for you,

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SCG
I am so sorry for your pain, and I guess I am one of those who tries to "put a pretty face" on this virus. I do it because it is the only way I can cope. It is the only way I can face knowing that I will have this the rest of my life. As long as I take my Valtrex, I have no problems. I do not feel dirty, and don't avoid telling anyone because I am ashamed. I avoid telling because of how I would be perceived by others, and that is very sad.

I am curious about one thing. In what ways is herpes spread aside from the usually accepted methods? I got mine from someone who had had a cold sore years and years before. He had no idea cold sores are herpes, and did not know he was contagious. I have heard that oral herpes can be transferred to the eyes, and how important it is to keep your hands clean to avoid this from happening. I have also heard of a condition on the hands. I disremember the name of that. I have heard of people with herpes inside their bodies and on their faces.

You say there are millions of people who are atypical and suffer as you do. I have never heard of a situation like yours, and would never belittle your suffering. I would be interested to know some of the ways other than sexual that herpes is spread. I know kissing during an outbreak or when there is shedding can transfer oral herpes. I do not think people are being insensitive, I think they just have never been informed of a condition like yours. There are people on here who put a good face on the situation because this virus seems to react to stress, and we are trying to help people deal with it without the added stress which will only make the symptoms worse. For many of us, things do get better as we learn to deal with the virus. Maybe I am atypical in that foods do not affect me, nor does stress.

The sad fact is that this virus will be in our bodies forever unless a cure is found, and the only way to survive and stay emotionally healthy is to accept that and learn to deal with it. I do not claim to be in the same degree of physical and emotional pain as you are, and cannot claim to understand how you feel, but I would like to understand and learn. I would like to hear from more atypical individuals. Maybe they have found ways to cope and could help each other, and help us to better relate to them.

Whether you choose to keep reading and communicating is up to you, but I hope you do. I do hope things get better for you,

It's a lot easier to put a pretty face on herpes when it's HSV1.

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Acesheart
The following is a rant. Normally, I would go back through such a writing to polish it to a presentable sheen. I detest cursing and incomplete/rambling thoughts. My investigative and researcher sides want to use upper level vocabulary, grammar and syntax. BUT right now….I don’t give a shit!

I am so frustrated, so angry, so DEPRESSED. I hear so many people say, even on this site, this is no big deal, it’s only a skin condition, it doesn’t control one’s life, don’t think of it often, it’s a just an irritant, it gets better, atypical reactions are a minority, it’s a STD/STI, blah balh blah.

It isn’t just an STD/STI!!! Oh, one may contract it WHEN having sex but not because of having sex as well as contracting because of sex. Then there are those like me……contracting it without any sexual involvement.

This fucking disease is a NOT a skin disease---it is a nerve disease spread through skin contact and manifesting symptoms on the skin…anyone can contract it in a number of different skin contact situations. And infection can occur anywhere on the body. I speculate there are MILLIONS of us out here contracting this shitty thing without any kind of sexual action (it doesn’t really matter if it’s sexual or not…. it’s the stigma attached because the CDC, other agencies, and "learned experts" deemed it an STD/STI---which perpetuates the stigma)

Even though we carry anti-bodies, we are NOT protected from infection to other parts of the body. Sadly, we can cross-infect ourselves to other parts of the body. This happened to me. I have spread HSV2 to my face. I’m now afraid to scratch anywhere and then touch myself anywhere else on my exposed skin. (So, now I sleep fully clothed) I speculate there are millions of us for whom this has happened.

Because of that, I have not purposefully touched another human for MONTHS and MONTHS. I have many grandchildren-----I won’t touch them, adult children----won’t touch, parents, siblings, extended family, friends, students….etc. won’t touch. I am surrounded by the love of family and friends BUT even so IT IS LONELY!!!!

Does it get better? For millions of us, yes millions of us who are atypical, it does not.

I was once a warrior, a law enforcement officer, R&D scientist/researcher and am now a teacher and I’m crying as I write this rant…because it has not gotten better----it has gotten much much much worse.

Initial symptom was nondescript and was misdiagnosed, subsequent obs (recognize now that’s what they were) looked like a pimple now and then. NOW 18 months later, oh my God, for 7 months, Obs are constant---yes CONSTANT. This disease, which was once seen as only a "pimple" now and then, now covers most of the penis and upper pelvic area and has now started manifesting itself between one leg and the scrotum. (and as mentioned above is now on my face)

Before anyone starts asking, I am otherwise HEALTY, EAT HEALTY and am in GREAT PHYSICAL SHAPE. And except for this crappy infliction have a full rich life with many friends spread around the world and more importantly a family that is NOT dysfunctional (yep, ya read it correctly NOT dysfunctional) Do I want to go over everything I’ve tired from prescription meds to "holistic" intervention?…nope. Let's just say thousands of dollars and hundreds of hours.

It DOES control my life and would anyone else’s if they have the reactions I do. It pisses me off to see those of us on here write all positive shit. More than likely those of us writing like that are not atypical and can afford the luxury of not having it foremost in their thinking. For the millions of us atypical folks, how can it not be the most thought about part of our lives. IT IS ALWAYS THERE---THE BLISTERS---THE ITCHING----THE PAIN---THE THOUGHT OF SPREADING IT TO OTHERS AS WELL AS CROSS-INFECTING OURSELVES-----ALWAYS.

Knowing what I know now, I wish those of us giving advise to non-hsv and hsv positive folks alike would STOP painting this dreadful disease as an "irritate." There are MILLIONS of us for whom it isn’t. And one cannot predict who will be atypical.

Fear factor and the hard core truth. If a person is HSV infected and is asymptomatic he/she doesn’t have a clue as to where the infection resides nor the extent of the infection. Even if a person experiences symptomatic OHSV it should not nor does not mean he/she does not have it genitally and vice-versa. Once infected, the host, may or may not be symptomatic and if symptomatic in one infected zone, he/she may or may not be symptomatic in another infected zone.

Because of what was stated in the above paragraph, sadly, if one is infected, then one MUST ASSUME one is infected all over. There are NO simple tests to narrow which DRG is infected or how many DRGs are infected---sure, one may speculate, postulated or even decree which or how many but one DOES NOT KNOW.

One could be shedding on a shoulder, hip, foot, finger, palm chin, calf…etc. Hopefully, soon there will be a test to determine the exact location of infection. But right now, seems all sights are focused on prophylactic/cure/treatment (which is FANTASTIC ---cure…. fingers crossed) rather than on site infection determination.

Again, knowing what I know now and experiencing what I am experiencing now…the gamble is not worth it. One never knows who will be atypical. I would never play Russian Roulette with the well being of others especially my loved ones!!

The consequence of not "playing", as stated above, is no human skin to skin touch!!! OH MY GOD I MISS HUMAN TOUCH!!!!!!! Weeping again…I miss picking up my grandchildren, blowing on their bellies, tickling them, kissing them……holding and kissing my children, parents, extended family and friends. And OMG do I ever miss having an intimated partner!!!!.

YES I am acutely aware of perceptiveness. Example is the old Russian proverb stating "I cried because I had no shoes until I saw a man who had no feet." This does not make it better! And yes, I DO count my many, many blessings. And here’s the but, BUT…..Oh, my God!!! Enough already. Please, please enough already!!!

Hey AdventureNoMore, great rant :) . I am sorry you are in that frame of mind today. Hopefully as life goes on, your life will change for the better. Take care, Truly Ace

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AdventureNoMore
I'm so sorry it sucks so badly for you.

And I know this may not be what you want to hear... but my experience was that the more I freaked out about it, the more emotional stress I put myself under with the shame, the anxiety, the depression, the worry, the worse I broke out. The truth is that they - doctors, the medical establishment, the research community - doesn't know a damn thing about it. I was asymptomatic for YEARS until the emotional trauma of my separation and subsequent divorce threw me into an tailspin, which this diagnosis only made worse. Why would someone who had no symptoms go from being perfectly fine to an outbreak once every couple of weeks, sometimes outbreaks on top of outbreaks? How I was feeling was the only difference and... it makes sense. The virus lives on your nerves, your central nervous system is directly linked into your brain, anxiety depresses the immune system... It's all connected. As hard as it is, and even if nothing changes, when you're in the kind of emotional pain that you're experiencing right now, you suffer twice over - the thing and then the feelings about the thing. Meditate, yoga, pray, whatever you do to ground yourself. I know, I know, it's the worst possible thing to say but it's also inescapably true: you don't have any choice in what happens to you most of the time but you always have a choice in how you react to it. I'm not preaching sunshine and glitter, just a little neutrality from which to observe and find a little peace.

gingeread,

You are correct I did not want to hear that BUT I did want to hear you! I am absolutely a cognoscente of the workings of physical reactions due to one’s mental state, and spiritual/social beliefs. (Training and experience due to my career.) So, I totally understand what stress causes. Part of staying in the physical shape I desire, includes martial arts and yoga. (lots of meditation..lol) So, yep, I know about that. And also, I totally subscribe with one always has a choice in how one reacts to a situation. (Tried to get criminals, self-absorbed people as well as "normal" people struggling how to react to terrible events to understand) I do know how herpes works.....all too well.

I hope my response does not offend you in anyway----I TOTALLY APPRECIATE you!!! Even though intellectually and emotionally I know all of what you say, it does not distract from you caring. If I could, I would give you hug…no skin-to-skin contact though lol…wouldn’t want to infect you further.

Thank you again!

I hope this finds you doing well.

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generic217

I'm curious about what your "atypical" symptoms are, and if you ever actually tested positive. Not questioning you, I have atypical symptoms, and I keep testing negative. My symptoms are inline with what a lot of atypical sufferers have, and even the docs at Westover Heights have said my symptoms are common with atypical GH sufferers, yet I still test negative. I was relieved to have them say it was negative, but also totally depressed to still be in this position where no one can narrow it down after all of these months. Without a diagnosis, there is no way to treat, and I've been in pain for 5 straight months! Just trying to hear from other atypical people.

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AdventureNoMore
I'm curious about what your "atypical" symptoms are, and if you ever actually tested positive. Not questioning you, I have atypical symptoms, and I keep testing negative. My symptoms are inline with what a lot of atypical sufferers have, and even the docs at Westover Heights have said my symptoms are common with atypical GH sufferers, yet I still test negative. I was relieved to have them say it was negative, but also totally depressed to still be in this position where no one can narrow it down after all of these months. Without a diagnosis, there is no way to treat, and I've been in pain for 5 straight months! Just trying to hear from other atypical people.

Hello Generic217,

HSV is a funny thing. There are no typical atypical manifestations. I consider my case atypical because of the onset of the abhorrent outbreaks after a year and a half from exposure. More specific, the outbreaks themselves are way over the top of "typical" outbreaks. The duration of the outbreaks aren’t "typical". Frequency---also not "typical." The pain can reach a 6 on the 1 – 10 scale and sometimes the itch can be infuriating. BTW I did test positive using IgG.

The above paragraph dealt with GHSV. My OHSV seems "typical."

((I have experienced a reprieve from GHSV for the last two weeks (after almost 8 straight months of this bull) but damn if I didn’t have an outbreak of OHSV…crap))

The typical part of my Obs is blisters. I deduce from your writing that you do not experience blisters? If you did develop blisters from HSV then swabbing should render an HSV reading. If you test negative using the swab as-well-as IgG, then I’m wondering if it is HSV.

You have my prayers.

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Acesheart
I'm curious about what your "atypical" symptoms are, and if you ever actually tested positive. Not questioning you, I have atypical symptoms, and I keep testing negative. My symptoms are inline with what a lot of atypical sufferers have, and even the docs at Westover Heights have said my symptoms are common with atypical GH sufferers, yet I still test negative. I was relieved to have them say it was negative, but also totally depressed to still be in this position where no one can narrow it down after all of these months. Without a diagnosis, there is no way to treat, and I've been in pain for 5 straight months! Just trying to hear from other atypical people.

I've been with ghsv2 for 25 years, I stayed asymptomatic for 23 years . I'm also on antivirals and Vit.b12 complex liquid sublingual. I've taken these for 25 years, the Vit.b helps with my prodromes. Taking antivirals supress the outbreaks and reduce the shedding, but I still get prodromes. Just not full blown outbreaks. Take care. Truly. Ace :)

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generic217
I've been with ghsv2 for 25 years, I stayed asymptomatic for 23 years . I'm also on antivirals and Vit.b12 complex liquid sublingual. I've taken these for 25 years, the Vit.b helps with my prodromes. Taking antivirals supress the outbreaks and reduce the shedding, but I still get prodromes. Just not full blown outbreaks. Take care. Truly. Ace :)

To the first question, I don't get blisters. 8 months scares me. But I'm at 5 right now, so maybe I'm atleast getting closer to relief, who knows. I had some rash with cracks in my skin, but I don't know if this is something else, or just atypical H. I have been tested for fungus / bacteria. all negative, but took meds regardless, no help.

Aces, tell me about your prodromes, how long does it last, what does it feel like? Just curious if its similar to what I have. Strange that you were in the clear for 23 years, and then it got worse. I guess that's what it does unfortunately. So to clarify, you just get these prodromal outbreaks with no blisters? That's what I wonder if I have.

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Acesheart
To the first question, I don't get blisters. 8 months scares me. But I'm at 5 right now, so maybe I'm atleast getting closer to relief, who knows. I had some rash with cracks in my skin, but I don't know if this is something else, or just atypical H. I have been tested for fungus / bacteria. all negative, but took meds regardless, no help.

Aces, tell me about your prodromes, how long does it last, what does it feel like? Just curious if its similar to what I have. Strange that you were in the clear for 23 years, and then it got worse. I guess that's what it does unfortunately. So to clarify, you just get these prodromal outbreaks with no blisters? That's what I wonder if I have.

Hey generic, my second outbreak was not bad at all after 23 years of dormancy. It was 3 tiny sores and lasted about 5 days . Yes even on supressive therapy I get prodrome symptoms. It feels like ants crawling under my skin down my back. Sometimes it gets like hot feelings. Some other times it feels like warm waters flushing in my vag ares. But I take 2 pills, Valacyclovir500mg. and they seem to subside, but I double up for a few days. After that it's one pill a day. Cimetidine and Tagamet are what I use for bleeding ulcers. I also take Vit.b12 which really does work great, it gives me energy , promotes good nerves health and relieves stresses . I have bleeding ulcers. So naturally I'm high strung. I have always taken Meds for ulcers, now I'm thinking these meds too , along with my antivirals and Vit.b12 all these have kept me with only two outbreaks in 25 years with ghsv2.. My second outbreak was stress induced, my only child left home for college, my nest was empty. I am alone 3 to 5.days a week. Very hard when your used to having at least your child for company. So I do believe Dr when he said stresses caused this outbreak. Hope this helps. Take care. Ace :)

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osten

I am so frustrated, so angry, so DEPRESSED. I hear so many people say, even on this site, this is no big deal, it’s only a skin condition, it doesn’t control one’s life, don’t think of it often, it’s a just an irritant, it gets better, atypical reactions are a minority, it’s a STD/STI, blah balh blah.

I'm sorry to hear that you are suffering so much. You should always keep in mind though that situations like yours are very unusual (hence, the label "atypical"). The vast majority of people with herpes do not suffer like that. I know that may give you scant comfort, but at least it should give you a hint as to why many people say those things. They are all true.

Your situation sounds horrible, and I feel sorry for you. However, would you prefer that the majority of people who suffer much less than you be more horrified about their virus rather than less? Would you prefer that unusual, extreme-case scenarios govern how everybody views this virus, thus making everybody more panicked and fearful than they already are? Would that make you suffer any less?

It isn’t just an STD/STI!!! Oh, one may contract it WHEN having sex but not because of having sex as well as contracting because of sex. Then there are those like me……contracting it without any sexual involvement.

I agree with you. It's not just an STD (and I don't think any authority would suggest that it is). The majority of people who have herpes got it non-sexually. I personally don't think it makes the slightest bit of difference whether or not it is "sexually-transmitted" or not anyway.

This fucking disease is a NOT a skin disease---it is a nerve disease spread through skin contact and manifesting symptoms on the skin…anyone can contract it in a number of different skin contact situations.

This is mostly now just semantics. Given that in most cases where symptoms arise, those symptoms occur on the skin, suggesting that it is primarily a skin disease seems very reasonable (regardless of where it goes latent). If you prefer to label it as a "skin and nerve" disease, that's fine too. It doesn't change the fact that it is not serious the vast majority of the time.

Even though we carry anti-bodies, we are NOT protected from infection to other parts of the body. Sadly, we can cross-infect ourselves to other parts of the body. This happened to me. I have spread HSV2 to my face. I’m now afraid to scratch anywhere and then touch myself anywhere else on my exposed skin. (So, now I sleep fully clothed) I speculate there are millions of us for whom this has happened.

It's true that the antibodies do not give you 100 percent protection, in terms of infection being transferred from one part of your body to the other. However, in practice, such transfer is very rare in cases when antibodies have built up. That it happened to you (and apparently happened so readily) is simply further indication that your case is indeed very atypical.

Does it get better? For millions of us, yes millions of us who are atypical, it does not ... Knowing what I know now, I wish those of us giving advise to non-hsv and hsv positive folks alike would STOP painting this dreadful disease as an "irritate." There are MILLIONS of us for whom it isn’t. And one cannot predict who will be atypical.

Here's where I begin to disagree more strongly with what you were saying. Why do you think that there are millions for whom it isn't? Where do those numbers come from? There are millions, actually hundreds of millions of people with herpes, and if such a large percentage of them suffered as you do, it really would be viewed as a serious disease. However, that is simply not the case.

The fact that you happened to be one of those people is very unfortunate, but it doesn't mean that it's by any means common. People who happen to have uncommon outcomes tend to think, or want to think, that their situation is less uncommon than it really is. However, your outcome really is very unusual.

Again, knowing what I know now and experiencing what I am experiencing now…the gamble is not worth it. One never knows who will be atypical. I would never play Russian Roulette with the well being of others especially my loved ones!!

Of course, one never knows who will be atypical. However, one can know that the majority of people will not be atypical. Would you prefer that the hundreds of millions of people who have herpes become hermits because of very unlikely extreme cases? Do you feel that would lessen the amount of suffering caused by this virus?

Again, I know you are suffering badly, and I feel for you. I also know that this is the appropriate venue for such a post. However, particularly as you addressed it to "typical" sufferers, seemingly with the intention of making them feel that the virus they have is more serious than it really is, I do feel compelled to respond, and try to keep a bit of perspective.

I wish you all the best.

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generic217

As it seems, I likely have a very atypical experience as well. It truly does wreak havoc on you mentally. It seems to do that for typical sufferers, imagine if you couldn't even be sure what you had, and there was no way to address it if it couldn't be proven. Imagine having doctors laugh at you every time you go into a doctors office searching for relief. Imagine it going on for a year like some on here have claimed.

That said, you don't need to be a hermit. Hopefully there is some solution with diets and meds that can make it more tolerable, maybe not. I don't know your specifics. But I found someone who was caring and loving and understanding, and there plenty out there who are already positive who still want to move forward with life and love, and maybe being with someone else who is positive will help avoid the worries of having "the conversation."

Beating yourself up mentally is probably only making it worse. I am the last person to say, "stay positive!" becaues I am struggling with it to. Go ahead and vent, sometimes it feels good. Just make sure you find some good things in life to balance it out too. There is more to you than Herpes.

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generic217

I'm very curious if you've had any luck with anti-viral meds. I have similar symptoms as you, always test negative, and am considering trying to go on them to see if it has any effect. I'd like to know if I have it or not before becoming intimiate but since testing will nevre seem to give me any clarity, atleast I can know that there might be a way to minimize spreading the disease.

The following is a rant. Normally, I would go back through such a writing to polish it to a presentable sheen. I detest cursing and incomplete/rambling thoughts. My investigative and researcher sides want to use upper level vocabulary, grammar and syntax. BUT right now….I don’t give a shit!

I am so frustrated, so angry, so DEPRESSED. I hear so many people say, even on this site, this is no big deal, it’s only a skin condition, it doesn’t control one’s life, don’t think of it often, it’s a just an irritant, it gets better, atypical reactions are a minority, it’s a STD/STI, blah balh blah.

It isn’t just an STD/STI!!! Oh, one may contract it WHEN having sex but not because of having sex as well as contracting because of sex. Then there are those like me……contracting it without any sexual involvement.

This fucking disease is a NOT a skin disease---it is a nerve disease spread through skin contact and manifesting symptoms on the skin…anyone can contract it in a number of different skin contact situations. And infection can occur anywhere on the body. I speculate there are MILLIONS of us out here contracting this shitty thing without any kind of sexual action (it doesn’t really matter if it’s sexual or not…. it’s the stigma attached because the CDC, other agencies, and "learned experts" deemed it an STD/STI---which perpetuates the stigma)

Even though we carry anti-bodies, we are NOT protected from infection to other parts of the body. Sadly, we can cross-infect ourselves to other parts of the body. This happened to me. I have spread HSV2 to my face. I’m now afraid to scratch anywhere and then touch myself anywhere else on my exposed skin. (So, now I sleep fully clothed) I speculate there are millions of us for whom this has happened.

Because of that, I have not purposefully touched another human for MONTHS and MONTHS. I have many grandchildren-----I won’t touch them, adult children----won’t touch, parents, siblings, extended family, friends, students….etc. won’t touch. I am surrounded by the love of family and friends BUT even so IT IS LONELY!!!!

Does it get better? For millions of us, yes millions of us who are atypical, it does not.

I was once a warrior, a law enforcement officer, R&D scientist/researcher and am now a teacher and I’m crying as I write this rant…because it has not gotten better----it has gotten much much much worse.

Initial symptom was nondescript and was misdiagnosed, subsequent obs (recognize now that’s what they were) looked like a pimple now and then. NOW 18 months later, oh my God, for 7 months, Obs are constant---yes CONSTANT. This disease, which was once seen as only a "pimple" now and then, now covers most of the penis and upper pelvic area and has now started manifesting itself between one leg and the scrotum. (and as mentioned above is now on my face)

Before anyone starts asking, I am otherwise HEALTY, EAT HEALTY and am in GREAT PHYSICAL SHAPE. And except for this crappy infliction have a full rich life with many friends spread around the world and more importantly a family that is NOT dysfunctional (yep, ya read it correctly NOT dysfunctional) Do I want to go over everything I’ve tired from prescription meds to "holistic" intervention?…nope. Let's just say thousands of dollars and hundreds of hours.

It DOES control my life and would anyone else’s if they have the reactions I do. It pisses me off to see those of us on here write all positive shit. More than likely those of us writing like that are not atypical and can afford the luxury of not having it foremost in their thinking. For the millions of us atypical folks, how can it not be the most thought about part of our lives. IT IS ALWAYS THERE---THE BLISTERS---THE ITCHING----THE PAIN---THE THOUGHT OF SPREADING IT TO OTHERS AS WELL AS CROSS-INFECTING OURSELVES-----ALWAYS.

Knowing what I know now, I wish those of us giving advise to non-hsv and hsv positive folks alike would STOP painting this dreadful disease as an "irritate." There are MILLIONS of us for whom it isn’t. And one cannot predict who will be atypical.

Fear factor and the hard core truth. If a person is HSV infected and is asymptomatic he/she doesn’t have a clue as to where the infection resides nor the extent of the infection. Even if a person experiences symptomatic OHSV it should not nor does not mean he/she does not have it genitally and vice-versa. Once infected, the host, may or may not be symptomatic and if symptomatic in one infected zone, he/she may or may not be symptomatic in another infected zone.

Because of what was stated in the above paragraph, sadly, if one is infected, then one MUST ASSUME one is infected all over. There are NO simple tests to narrow which DRG is infected or how many DRGs are infected---sure, one may speculate, postulated or even decree which or how many but one DOES NOT KNOW.

One could be shedding on a shoulder, hip, foot, finger, palm chin, calf…etc. Hopefully, soon there will be a test to determine the exact location of infection. But right now, seems all sights are focused on prophylactic/cure/treatment (which is FANTASTIC ---cure…. fingers crossed) rather than on site infection determination.

Again, knowing what I know now and experiencing what I am experiencing now…the gamble is not worth it. One never knows who will be atypical. I would never play Russian Roulette with the well being of others especially my loved ones!!

The consequence of not "playing", as stated above, is no human skin to skin touch!!! OH MY GOD I MISS HUMAN TOUCH!!!!!!! Weeping again…I miss picking up my grandchildren, blowing on their bellies, tickling them, kissing them……holding and kissing my children, parents, extended family and friends. And OMG do I ever miss having an intimated partner!!!!.

YES I am acutely aware of perceptiveness. Example is the old Russian proverb stating "I cried because I had no shoes until I saw a man who had no feet." This does not make it better! And yes, I DO count my many, many blessings. And here’s the but, BUT…..Oh, my God!!! Enough already. Please, please enough already!!!

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