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bigsusan

Went from "harmless" HSV1 on the lips, to a nightmare of symptoms.

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bigsusan

Two years ago I cheated on my boyfriend with my ex boyfriend, in a fit of confusion, dissatisfaction and a delusional urge to feel good about myself. Turns out my ex boyfriend had contracted HSV1 while we were apart. Felt the tingling on my lips about two months later. Was in denial and just kept living my life. Told my boyfriend about the cheating and he forgave me, thank goodness.

Well that tingling spread to my eyes. At this point it was still just tingling, no visible bumps so I figured it can't get much worse. Well, still somewhat in denial, I decided to get a wisdom tooth removed that had been bothering me for a while (since far before I got the HSV). I thought nothing of it and went to the dentist.

Well soon after the removal, like the day after, my first actual sores broke out, on my lips. The eye tingling also got more frequent and painful, and started to feel some slight stings on my hands too about a week after that. Started freaking out and finally got tested. Blood test came back positive for HSV1. I was gutted. Went back to the doctor to talk about options.

Despite the other locations I was now feeling the herpes symptoms (tingling in the eyes, and now vagina from masturbating while in denial, thus not taking the right precautions) like most doctors the one I went to tried to assure me that all I had was a small lip infection that would never be anything worse than that.

Two years and tons of pointless, frustrating doctors visits later and I appear to have spread the infections to the following places. I didn't think it was possible to spread this much, but I'm thinking its very likely that getting a tooth pulled so close to my first outbreak really compromised my immune system's ability to build the usual defenses that would keep it from spreading. These are all the places I've felt symptoms -- tingling, stinging, and/or bumps, in no particular order:

- Lip
- Above lip "mustache" area
- hands... have had actual bumps, many tiny ones and three large ones on the palms that have left scars.
- Eyes/eyelids (not just stinging but I've woken up with them nearly glued shut by either pus or excessive tears due to irritation)
- Sides of face near ears
- Inside ears (I've had stinging and itching inside and outside of the ear, followed by a dimming of my hearing that lasts ~20 minutes at a time. Herpes-caused tinnitus?)
- Inside of nose, including deep inside near sinuses which is very scary due to encephilitis risk
- Chest, above and under boobs
- Neck/collarbone/chin region
- Vagina area (mons pubis, had some sores there burst and leave pus on my underwear recently)

What angers me the most is how casually doctors treated it, enabling my denial for so long. If I had been more informed about precautions maybe I would've taken more of them. I'm also angry that this virus is so stigmatized that accurate information about it is rare. If I knew how likely the potential for spreading was, especially if the immune system was compromised by something like invasive dental work too close to the first outbreak, that probably would've slapped some sense into me before I signed up for that appointment, thinking it'd make no difference.

I'm basically in a position now where I have itching, aches, and bumps every day. Nothing huge and unsightly, the breakouts are usually small itchy bumps, preceded by stinging and tingling. But it's uncomfortable, and the ear, eye, and inner nose infections are pretty fucking scary. The fact that I could go blind, deaf, or even die or lose neural functions, just because of one shitty decision I made is gut-wrenching and horrifying.

I've been using a garlic solution, as advised by a thread I saw on here, and when I apply it it stops any itching and stinging for at least a few hours which is nice. If I didn't have that, I think places like my eyes and ears would be much worse off by now.

Meditation helps me not be overwhelmed with the thoughts and fears. But I want to know if anyone else got unlucky like me and has shitty symptoms that have spread way past the "totally harmless occasional outbreaks in one isolated spot" phase. I need some solidarity.

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WilsoInAus

I think the most important thing is to question whether any of this is related to herpes. There is very good reason to believe it is not.

Most everything you describe is well beyond the capability of a rather simple piece of DNA.

You have a childhood HSV-1 infection that does not cause you any great troubles. 

You will not have infected any other part of your body.

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bigsusan
57 minutes ago, WilsoInAus said:

I think the most important thing is to question whether any of this is related to herpes. There is very good reason to believe it is not.

Most everything you describe is well beyond the capability of a rather simple piece of DNA.

You have a childhood HSV-1 infection that does not cause you any great troubles. 

You will not have infected any other part of your body.

Every symptom of HSV I've experienced has been reported in medical studies.
Hand herpes - whitlow.
Ear herpes - herpes tinnitus.
Eye herpes - Ocular herpes keratitis 
Vagina - genital herpes

My research has shown that herpes can infect any of those areas in an immunocomprimised person, and even sometimes immunocompetent people. Very likely that since my first real breakout was right after that dental extraction, my immune system was compromised to some degree, and the virus has had the upper hand ever since.

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WilsoInAus

No I’m sorry. 

First, no Individual has been diagnosed with all those aspects of herpes.

Second, no amount of research means any of these things have actually happened to YOU.

Third, none of these things have been confirmed for you.

 

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Roja

Dear bigsusan, 

don't think yourself crazy. 

Quote

The fact that I could go blind, deaf, or even die or lose neural functions, just because of one shitty decision I made is gut-wrenching and horrifying.

Oops, these fears sound familiar to me. I think you have been researching a lot on the internet lately, right? 9_9 Haha, that's what we all do at the beginning. Believe me: The possibility of losing your neural functions because of herpes is like 0. There are WAY more risks out there in your normal life. Any normal flu is more likely to kill you than this. 

Tingling and stinging can be symptoms of a lot of health problems. Problems with your back, nervous system, hormones, any skin condition,... and also anxiety, depression. Have you talked with a mental health care provider about your fears and where they come from? It helps a lot! 

 

Ps.: It is not your fault that you got herpes. 80 (!) % of the people around the globe have HSV1. So the possibility that you have already had it before cheating on your boyfriend is quite high. 

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Roja

Also check this out: 

Quote

Myth: I can pass herpes to myself from my mouth to my genitals if I accidentally touch myself.

Fact: Once you have herpes at one site, it is rare to then get the same type at another site. This is because your body develops antibodies which prevent this from happening.

 https://www.herpes.org.nz/patient-info/myths-vs-facts/

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BartSimpson
5 hours ago, Roja said:

This is completely false , this virus infects any nerves it touches . If you've already seroconverted and have a functional immune system it's unlikely youll experience many symptoms related to autoinnoculation. Let your immune system get run down and you'll feel the itching inside the ear , the burning and itching eyes , the nerve and muscle pain etc . Of course if you go to a doctor they will diagnose you with any number of 'symptom management' diseases like fibromyalgia , optic neuritis , peripheral neuropathy etc . 

our medical system is designed to treat symptoms of diseases with drug dependency ($$$) . There's no focus on identification of root cause of illness or prevention . 

And Bigsusan I would highly recommend low histamine diet and low intake of highly acidic foods or drinks . Try that for a week and you will see symptoms improve . When histamines are high in body it suppresses T cell function and T cells are what keep viruses in check .

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Roja
41 minutes ago, BartSimpson said:

This is completely false , this virus infects any nerves it touches . If you've already seroconverted and have a functional immune system it's unlikely youll experience many symptoms related to autoinnoculation. Let your immune system get run down and you'll feel the itching inside the ear , the burning and itching eyes , the nerve and muscle pain etc . Of course if you go to a doctor they will diagnose you with any number of 'symptom management' diseases like fibromyalgia , optic neuritis , peripheral neuropathy etc . 

our medical system is designed to treat symptoms of diseases with drug dependency ($$$) . There's no focus on identification of root cause of illness or prevention . 

And Bigsusan I would highly recommend low histamine diet and low intake of highly acidic foods or drinks . Try that for a week and you will see symptoms improve . When histamines are high in body it suppresses T cell function and T cells are what keep viruses in check .

 

As far as I know there is no clear scientific research about autoinoculation, but every information I find says that the risk of giving herpes to yourself is very low. I understand that touching a current OB and rubbing your eyes afterwards is not recommended :D 

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BartSimpson
Just now, Roja said:

 

As far as I know there is no clear scientific research about autoinoculation, but every information I find says that the risk of giving herpes to yourself is very low. I understand that touching a current OB and rubbing your eyes afterwards is not recommended :D 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC88338/

 

scroll down about 3/4s of the page , the paragraphs right before acknowledgements . That's just one study from pub Med showing autoinnoculation late in disease course , there are many others . It's dangerous when people on this message board give out bad info . 

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sameer82
11 hours ago, bigsusan said:

Two years ago I cheated on my boyfriend with my ex boyfriend, in a fit of confusion, dissatisfaction and a delusional urge to feel good about myself. Turns out my ex boyfriend had contracted HSV1 while we were apart. Felt the tingling on my lips about two months later. Was in denial and just kept living my life. Told my boyfriend about the cheating and he forgave me, thank goodness.

Well that tingling spread to my eyes. At this point it was still just tingling, no visible bumps so I figured it can't get much worse. Well, still somewhat in denial, I decided to get a wisdom tooth removed that had been bothering me for a while (since far before I got the HSV). I thought nothing of it and went to the dentist.

Well soon after the removal, like the day after, my first actual sores broke out, on my lips. The eye tingling also got more frequent and painful, and started to feel some slight stings on my hands too about a week after that. Started freaking out and finally got tested. Blood test came back positive for HSV1. I was gutted. Went back to the doctor to talk about options.

Despite the other locations I was now feeling the herpes symptoms (tingling in the eyes, and now vagina from masturbating while in denial, thus not taking the right precautions) like most doctors the one I went to tried to assure me that all I had was a small lip infection that would never be anything worse than that.

Two years and tons of pointless, frustrating doctors visits later and I appear to have spread the infections to the following places. I didn't think it was possible to spread this much, but I'm thinking its very likely that getting a tooth pulled so close to my first outbreak really compromised my immune system's ability to build the usual defenses that would keep it from spreading. These are all the places I've felt symptoms -- tingling, stinging, and/or bumps, in no particular order:

- Lip
- Above lip "mustache" area
- hands... have had actual bumps, many tiny ones and three large ones on the palms that have left scars.
- Eyes/eyelids (not just stinging but I've woken up with them nearly glued shut by either pus or excessive tears due to irritation)
- Sides of face near ears
- Inside ears (I've had stinging and itching inside and outside of the ear, followed by a dimming of my hearing that lasts ~20 minutes at a time. Herpes-caused tinnitus?)
- Inside of nose, including deep inside near sinuses which is very scary due to encephilitis risk
- Chest, above and under boobs
- Neck/collarbone/chin region
- Vagina area (mons pubis, had some sores there burst and leave pus on my underwear recently)

What angers me the most is how casually doctors treated it, enabling my denial for so long. If I had been more informed about precautions maybe I would've taken more of them. I'm also angry that this virus is so stigmatized that accurate information about it is rare. If I knew how likely the potential for spreading was, especially if the immune system was compromised by something like invasive dental work too close to the first outbreak, that probably would've slapped some sense into me before I signed up for that appointment, thinking it'd make no difference.

I'm basically in a position now where I have itching, aches, and bumps every day. Nothing huge and unsightly, the breakouts are usually small itchy bumps, preceded by stinging and tingling. But it's uncomfortable, and the ear, eye, and inner nose infections are pretty fucking scary. The fact that I could go blind, deaf, or even die or lose neural functions, just because of one shitty decision I made is gut-wrenching and horrifying.

I've been using a garlic solution, as advised by a thread I saw on here, and when I apply it it stops any itching and stinging for at least a few hours which is nice. If I didn't have that, I think places like my eyes and ears would be much worse off by now.

Meditation helps me not be overwhelmed with the thoughts and fears. But I want to know if anyone else got unlucky like me and has shitty symptoms that have spread way past the "totally harmless occasional outbreaks in one isolated spot" phase. I need some solidarity.

Wow that sounds exactly like my situation the only difference here is i am yet to test positive for HSV its been two years since i had unprotected exposure which had given me a wart on my glans but once it got removed i started getting these rashes on my glans which used to appear and disappear on its own ..i am not sure how but suddenly one night my right eye went blurry and turned full redness and within few days both my eyes turned red with white discharge which happened almost 2-3 times a day and blurry vision ..i went to eye specialist they given so many different steroid drops which were not healing it at all ..A month later i had sex with someone protected and i had breakout type on my glans turned red and terrible pain i went to doc he said it looked like HSV and put me on antiviral though the blood test came negative ..After taking the antiviral 10 day course my eye issue improved drastically ..i am having similar issues dry ears with itching and tingling also have sinus issues had horrible pain inside nose and have sort of dry and cracked lips which heal for a week and come back ..lots of tiny pimples or rashes all over the body including neck ..these were also causing me tingling pain in my hands and legs also ..i had tested HSV 8 months after my antivirals and its still turned negative and but these rashes on my glans used to come and go sometimes without pain sometimes with pain ..Now last week i went to dental cleaning and my doctor said my wisdom tooth should be removed as its hurting the jaw..and three days later today i had those rashes and pain all over my glans appear from nowhere after the dental procedure ..Sadly i have almost all your symptoms but testing negative for HSV ..

Do you have blurry vision or floaters and sensitivity to light ? apart from the pain and also the discharge is it white and watery and happens many times a day ???

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Roja
1 hour ago, BartSimpson said:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC88338/

 

scroll down about 3/4s of the page , the paragraphs right before acknowledgements . That's just one study from pub Med showing autoinnoculation late in disease course , there are many others . It's dangerous when people on this message board give out bad info . 

Look, I know that there is a risk. But it is still small. The studies you were citing are from the late 70s. One study (this one) is from 1980 and it says: "In 1975 Oh et al. reported the first 2 cases [...] Since that time 12 additional cases [..] have been described. In 3 of these no clinical data was included."

So they had 15 cases in 5 years. Moreover, 3 without clinical data. 

As your study says: 

Quote

Nonsexual transmission of HSV-1 also may occur by autotransmission. This could include transmission of viral particles from oral lesions through the gut to the perineum or by the direct inoculation of virus to the genitals on fingers or fomites. 

 

Sure, of course it COULD happen. But with normal hygiene (washing your hands, changing underwear etc.) up to now it looks like risk is very low.

However - I am not a doctor, I just base my information on medical studies I am reading. 

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Roja
27 minutes ago, sameer82 said:

Wow that sounds exactly like my situation the only difference here is i am yet to test positive for HSV its been two years since i had unprotected exposure which had given me a wart on my glans but once it got removed i started getting these rashes on my glans which used to appear and disappear on its own ..i am not sure how but suddenly one night my right eye went blurry and turned full redness and within few days both my eyes turned red with white discharge which happened almost 2-3 times a day and blurry vision ..i went to eye specialist they given so many different steroid drops which were not healing it at all ..A month later i had sex with someone protected and i had breakout type on my glans turned red and terrible pain i went to doc he said it looked like HSV and put me on antiviral though the blood test came negative ..After taking the antiviral 10 day course my eye issue improved drastically ..i am having similar issues dry ears with itching and tingling also have sinus issues had horrible pain inside nose and have sort of dry and cracked lips which heal for a week and come back ..lots of tiny pimples or rashes all over the body including neck ..these were also causing me tingling pain in my hands and legs also ..i had tested HSV 8 months after my antivirals and its still turned negative and but these rashes on my glans used to come and go sometimes without pain sometimes with pain ..Now last week i went to dental cleaning and my doctor said my wisdom tooth should be removed as its hurting the jaw..and three days later today i had those rashes and pain all over my glans appear from nowhere after the dental procedure ..Sadly i have almost all your symptoms but testing negative for HSV ..

 Do you have blurry vision or floaters and sensitivity to light ? apart from the pain and also the discharge is it white and watery and happens many times a day ???

Maybe another medical condition? What does your doctors say?

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bigsusan
8 hours ago, Roja said:

Yes, the oozing sores that now appear on my vagina despite me no longer being sexually active, are entirely in my head.

I mentioned in my story that I have reason to believe my immune system was compromised around the time of my primary infection which interfered with the formation of those antibodies. Autoinnoculation IS possible and most of the popular articles on it completely ignore the research studies that proves it happens, even to immunocompetent patients sometimes.

https://www.amjmed.com/article/0002-9343(85)90560-1/fulltext

https://www.researchgate.net/publication/7414568_Herpes_simplex_Autoinoculation_versus_dissemination

http://www.joms.org/article/S0278-2391(07)00230-3/pdf

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bigsusan
8 hours ago, Roja said:

Tingling and stinging can be symptoms of a lot of health problems. Problems with your back, nervous system, hormones, any skin condition,... and also anxiety, depression.

Recurrent tingling in the same areas, followed by itching, pain and bumps/sores are a symptom of anxiety and depression?

And I already said I do meditation for the emotional effects, which I'm dealing with a lot better than a person who doesn't meditate. I don't need to see a doctor for my mental health (who would probably just prescribe unnecessary antidepressants) because outside of the persistent itching and sores, I feel fine and am able to live my life. It makes sense to have at least occassional fears of serious issues when you have a infection in such sensitive areas. 

Edited by bigsusan

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bigsusan
3 hours ago, BartSimpson said:

This is completely false , this virus infects any nerves it touches . If you've already seroconverted and have a functional immune system it's unlikely youll experience many symptoms related to autoinnoculation. Let your immune system get run down and you'll feel the itching inside the ear , the burning and itching eyes , the nerve and muscle pain etc . Of course if you go to a doctor they will diagnose you with any number of 'symptom management' diseases like fibromyalgia , optic neuritis , peripheral neuropathy etc . 

 our medical system is designed to treat symptoms of diseases with drug dependency ($$$) . There's no focus on identification of root cause of illness or prevention . 

And Bigsusan I would highly recommend low histamine diet and low intake of highly acidic foods or drinks . Try that for a week and you will see symptoms improve . When histamines are high in body it suppresses T cell function and T cells are what keep viruses in check .

Exactly.

Thank you for the advice. What are "highly acidic foods"? Is something like grapefruit or lemon acidic? Are you saying I should do an alkaline diet?

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WilsoInAus
3 hours ago, BartSimpson said:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC88338/

 

scroll down about 3/4s of the page , the paragraphs right before acknowledgements . That's just one study from pub Med showing autoinnoculation late in disease course , there are many others . It's dangerous when people on this message board give out bad info . 

You have misinterpreted the article which deals with further spread of herpes before it becomes established. I will concede that the way the article is written is designed to be sensationalist and open to misinterpretation. 

Luckily we know better these days.

Please exercise care in spreading misinformation to suit your own purposes. The readers of this website deserve better insight.

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Roja
2 hours ago, bigsusan said:

Recurrent tingling in the same areas, followed by itching, pain and bumps/sores are a symptom of anxiety and depression?

And I already said I do meditation for the emotional effects, which I'm dealing with a lot better than a person who doesn't meditate. I don't need to see a doctor for my mental health (who would probably just prescribe unnecessary antidepressants) because outside of the persistent itching and sores, I feel fine and am able to live my life. It makes sense to have at least occassional fears of serious issues when you have a infection in such sensitive areas. 

Why not? Psychosomatic symptoms are not unusual. I am not saying you are depressive or that your mental health is not good, I just wanted to give you the opportunity to find a solution. I went to a psychotherapist for 2 years when I got diagnosed (because YES, I also had fear and anxiety because of herpes), and I found out a lot of mental triggers for herpes. If you find a good one he or she will not prescribe you medication if there is no reason for it. 

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Roja
2 hours ago, bigsusan said:

Yes, the oozing sores that now appear on my vagina despite me no longer being sexually active, are entirely in my head.

I mentioned in my story that I have reason to believe my immune system was compromised around the time of my primary infection which interfered with the formation of those antibodies. Autoinnoculation IS possible and most of the popular articles on it completely ignore the research studies that proves it happens, even to immunocompetent patients sometimes.

https://www.amjmed.com/article/0002-9343(85)90560-1/fulltext

https://www.researchgate.net/publication/7414568_Herpes_simplex_Autoinoculation_versus_dissemination

http://www.joms.org/article/S0278-2391(07)00230-3/pdf

Article nr. 1: They report ONE case of a young boy

Article nr. 2: Four cases

Article nr. 3: Also ONE case of a women who suffered from severe herpes after a traumatic accident.

Again, YES, it might be possible. But these studies say nothing at all up to now! 

Don't make yourself crazy. You are not having terminal cancer, you are not suffering from HIV. It is just herpes. 

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blurneworder
6 hours ago, sameer82 said:

Wow that sounds exactly like my situation the only difference here is i am yet to test positive for HSV its been two years since i had unprotected exposure which had given me a wart on my glans but once it got removed i started getting these rashes on my glans which used to appear and disappear on its own ..i am not sure how but suddenly one night my right eye went blurry and turned full redness and within few days both my eyes turned red with white discharge which happened almost 2-3 times a day and blurry vision ..i went to eye specialist they given so many different steroid drops which were not healing it at all ..A month later i had sex with someone protected and i had breakout type on my glans turned red and terrible pain i went to doc he said it looked like HSV and put me on antiviral though the blood test came negative ..After taking the antiviral 10 day course my eye issue improved drastically ..i am having similar issues dry ears with itching and tingling also have sinus issues had horrible pain inside nose and have sort of dry and cracked lips which heal for a week and come back ..lots of tiny pimples or rashes all over the body including neck ..these were also causing me tingling pain in my hands and legs also ..i had tested HSV 8 months after my antivirals and its still turned negative and but these rashes on my glans used to come and go sometimes without pain sometimes with pain ..Now last week i went to dental cleaning and my doctor said my wisdom tooth should be removed as its hurting the jaw..and three days later today i had those rashes and pain all over my glans appear from nowhere after the dental procedure ..Sadly i have almost all your symptoms but testing negative for HSV ..

Do you have blurry vision or floaters and sensitivity to light ? apart from the pain and also the discharge is it white and watery and happens many times a day ???

I have symptoms very similar to yours.

I have not tested positive 

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blurneworder
17 hours ago, bigsusan said:

Two years ago I cheated on my boyfriend with my ex boyfriend, in a fit of confusion, dissatisfaction and a delusional urge to feel good about myself. Turns out my ex boyfriend had contracted HSV1 while we were apart. Felt the tingling on my lips about two months later. Was in denial and just kept living my life. Told my boyfriend about the cheating and he forgave me, thank goodness.

Well that tingling spread to my eyes. At this point it was still just tingling, no visible bumps so I figured it can't get much worse. Well, still somewhat in denial, I decided to get a wisdom tooth removed that had been bothering me for a while (since far before I got the HSV). I thought nothing of it and went to the dentist.

Well soon after the removal, like the day after, my first actual sores broke out, on my lips. The eye tingling also got more frequent and painful, and started to feel some slight stings on my hands too about a week after that. Started freaking out and finally got tested. Blood test came back positive for HSV1. I was gutted. Went back to the doctor to talk about options.

Despite the other locations I was now feeling the herpes symptoms (tingling in the eyes, and now vagina from masturbating while in denial, thus not taking the right precautions) like most doctors the one I went to tried to assure me that all I had was a small lip infection that would never be anything worse than that.

Two years and tons of pointless, frustrating doctors visits later and I appear to have spread the infections to the following places. I didn't think it was possible to spread this much, but I'm thinking its very likely that getting a tooth pulled so close to my first outbreak really compromised my immune system's ability to build the usual defenses that would keep it from spreading. These are all the places I've felt symptoms -- tingling, stinging, and/or bumps, in no particular order:

- Lip
- Above lip "mustache" area
- hands... have had actual bumps, many tiny ones and three large ones on the palms that have left scars.
- Eyes/eyelids (not just stinging but I've woken up with them nearly glued shut by either pus or excessive tears due to irritation)
- Sides of face near ears
- Inside ears (I've had stinging and itching inside and outside of the ear, followed by a dimming of my hearing that lasts ~20 minutes at a time. Herpes-caused tinnitus?)
- Inside of nose, including deep inside near sinuses which is very scary due to encephilitis risk
- Chest, above and under boobs
- Neck/collarbone/chin region
- Vagina area (mons pubis, had some sores there burst and leave pus on my underwear recently)

What angers me the most is how casually doctors treated it, enabling my denial for so long. If I had been more informed about precautions maybe I would've taken more of them. I'm also angry that this virus is so stigmatized that accurate information about it is rare. If I knew how likely the potential for spreading was, especially if the immune system was compromised by something like invasive dental work too close to the first outbreak, that probably would've slapped some sense into me before I signed up for that appointment, thinking it'd make no difference.

I'm basically in a position now where I have itching, aches, and bumps every day. Nothing huge and unsightly, the breakouts are usually small itchy bumps, preceded by stinging and tingling. But it's uncomfortable, and the ear, eye, and inner nose infections are pretty fucking scary. The fact that I could go blind, deaf, or even die or lose neural functions, just because of one shitty decision I made is gut-wrenching and horrifying.

I've been using a garlic solution, as advised by a thread I saw on here, and when I apply it it stops any itching and stinging for at least a few hours which is nice. If I didn't have that, I think places like my eyes and ears would be much worse off by now.

Meditation helps me not be overwhelmed with the thoughts and fears. But I want to know if anyone else got unlucky like me and has shitty symptoms that have spread way past the "totally harmless occasional outbreaks in one isolated spot" phase. I need some solidarity.

I relate to the problems on your lip and ear

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WilsoInAus
17 minutes ago, blurneworder said:

I relate to the problems on your lip and ear

That’s important as your issues are conclusively not herpes. This would be a great test case to get a true diagnosis and potentially shed light to those suffering.

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bigsusan
On 11/30/2018 at 5:02 AM, Roja said:

Article nr. 1: They report ONE case of a young boy

Article nr. 2: Four cases

Article nr. 3: Also ONE case of a women who suffered from severe herpes after a traumatic accident.

Again, YES, it might be possible. But these studies say nothing at all up to now! 

Don't make yourself crazy. You are not having terminal cancer, you are not suffering from HIV. It is just herpes. 

You realize that every single case of herpes does not get turned into a laboratory study, right?

The vast majority of them just get treated with valtrex and sent home. The point of me posting a case study was to show that symptoms like mine indeed possible. Not as a statistical representation of how common it is. 

Cancer and HIV are not the only diseases that can be serious. The flu is also considered "no big deal" until it leads to pneumonia and kills someone. Imagine if that person was told "it's no big deal"?

Seriously it helps no one to tell someone with abnormally excessive symptoms that "whatever it's just herpes". Very unhelpful and belittling to what I've been going through. You think I want to have all this itching and burning, headaches and sores? No I do not. I'd be glad to have a benign case of herpes only on the lip and nowhere else. But I'd be completely lying to myself if I said that was all I have. 

On 11/30/2018 at 7:49 AM, blurneworder said:

I relate to the problems on your lip and ear

I'm sorry to hear that :( Have you been using anything to treat those areas?

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blurneworder
43 minutes ago, bigsusan said:

You realize that every single case of herpes does not get turned into a laboratory study, right?

The vast majority of them just get treated with valtrex and sent home. The point of me posting a case study was to show that symptoms like mine indeed possible. Not as a statistical representation of how common it is. 

Cancer and HIV are not the only diseases that can be serious. The flu is also considered "no big deal" until it leads to pneumonia and kills someone. Imagine if that person was told "it's no big deal"?

Seriously it helps no one to tell someone with abnormally excessive symptoms that "whatever it's just herpes". Very unhelpful and belittling to what I've been going through. You think I want to have all this itching and burning, headaches and sores? No I do not. I'd be glad to have a benign case of herpes only on the lip and nowhere else. But I'd be completely lying to myself if I said that was all I have. 

I'm sorry to hear that :( Have you been using anything to treat those areas?

Nothing has helped yet

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blurneworder

Have you had your eye checked for herpes?

I also experience the pain in my eyes, but herpes did not show up when checked. I also slightly lose hearing in one of my ears.

how many blood tests did you have and how long until you were infected until testing positive?

Edited by blurneworder

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Roja
15 hours ago, bigsusan said:

You realize that every single case of herpes does not get turned into a laboratory study, right?

The vast majority of them just get treated with valtrex and sent home. The point of me posting a case study was to show that symptoms like mine indeed possible. Not as a statistical representation of how common it is. 

Cancer and HIV are not the only diseases that can be serious. The flu is also considered "no big deal" until it leads to pneumonia and kills someone. Imagine if that person was told "it's no big deal"?

Seriously it helps no one to tell someone with abnormally excessive symptoms that "whatever it's just herpes". Very unhelpful and belittling to what I've been going through. You think I want to have all this itching and burning, headaches and sores? No I do not. I'd be glad to have a benign case of herpes only on the lip and nowhere else. But I'd be completely lying to myself if I said that was all I have. 

I'm sorry to hear that :( Have you been using anything to treat those areas?

bigsusan, 

I don't want to tell you what you have or what not. I just wanted to show you that the possibility of having ALL those symptoms because of herpes is very, very small. I myself experienced that the fear of getting "something serious" from herpes can lead to strong psychosomatic symptoms. 

I am not taking every medical study for granted, nor do I think that medical studies always represent "the truth". However, I think we can take them as a good reference. Yes, people die from the flu or from "less serious" things. But is it really helpful to freak out about something that in most of the cases is harmless?

However, I wish you all the best and I hope you find a solution for your symptoms soon. 

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