Here’s what’s happening to me - is it herpes?

[blurneworder]

1 hour ago, Ishmael said:

I mean, testing negative at 3 months and then again at 5 months is not what I've ever heard of as "inconclusive". 

I know how this all sounds, but I still have symptoms that persist on areas where herpes thrive.

I saw a doctor at Urgent Care who said my symptoms sound herpetic. The eye doctor was alarmed when I told her all the symptoms. She said she has seen cases of eye damage like mine where the symptoms are hard to detect, but it’s herpes.

Again, what else causes redness, burning, small cuts  and clusters of tiny white bumps on the lips and corners of the mouth? What causes constant irritation and itching in the anus and groin? What causes cuts on the skin of a penis along with redness on the foreskin? What causes nerve irritation? What causes fever blisters in the mouth?  What causes pimples in the groin? What causes daily itchy, red bumps on the groin?

What else could cause these things to happen at once, after unprotected sex, and after having the flu?

[MissGuided]

On 11/11/2018 at 11:39 PM, blurneworder said:

I understand where you are coming from with this.

The feelings I have of fatigue, dizziness, fullness in my ears, itchy bum, itchy groin, red itchy scrotum, burning mouth, pain in eyes, nerve pain in hand and foot, and constant cuts on my lips and penis are definitely not in my mind.

My body is going through something, and the symptoms I'm having match those felt by people with herpes. Again, all of this happened after unprotected oral and vaginal sex.

I want you to be the correct one in this discussion, and if you are, I will tell you.

Have you asked the girl you thought you caught this from to get tested, or has she already? 

[blurneworder]

12 minutes ago, MissGuided said:

Have you asked the girl you thought you caught this from to get tested, or has she already? 

Yeah, negative shortly after we were together. Since then, I don't know. It's not a communicative relationship anymore.

[Ishmael]

20 hours ago, blurneworder said:

I know how this all sounds, but I still have symptoms that persist on areas where herpes thrive.

I saw a doctor at Urgent Care who said my symptoms sound herpetic. The eye doctor was alarmed when I told her all the symptoms. She said she has seen cases of eye damage like mine where the symptoms are hard to detect, but it’s herpes.

Again, what else causes redness, burning, small cuts  and clusters of tiny white bumps on the lips and corners of the mouth? What causes constant irritation and itching in the anus and groin? What causes cuts on the skin of a penis along with redness on the foreskin? What causes nerve irritation? What causes fever blisters in the mouth?  What causes pimples in the groin? What causes daily itchy, red bumps on the groin?

What else could cause these things to happen at once, after unprotected sex, and after having the flu?

Health anxiety. If you test positive on the Western Blot, I'll buy you a beer.

[blurneworder]

Just now, Ishmael said:

Health anxiety. If you test positive on the Western Blot, I'll buy you a beer.

I've had anxiety worse than this, and it did not cause nerve pain, red itchy spots, and cuts on my penis and mouth. 

If I test positive you can buy my antivirals.

[Ishmael]

21 hours ago, blurneworder said:

I've had anxiety worse than this, and it did not cause nerve pain, red itchy spots, and cuts on my penis and mouth. 

If I test positive you can buy my antivirals.

I've had health anxiety (otherwise known as hypochondria) for decades, and it has caused me to experience psychosomatic nerve pain and perceive normal lumps and bumps as much, much more sinister than they were. Your symptoms "sound"  herpetic, but so far, outside of the eye doctor, no healthcare professional has told you "Oh yeah, these sores look like herpes". Am I right about that? 

[blurneworder]

1 hour ago, Ishmael said:

I've had health anxiety (otherwise known as hypochondria) for decades, and it has caused me to experience psychosomatic nerve pain and perceive normal lumps and bumps as much, much more sinister than they were. Your symptoms "sound"  herpetic, but so far, outside of the eye doctor, no healthcare professional has told you "Oh yeah, these sores look like herpes". Am I right about that? 

You are almost correct.

A doctor at urgent care told me these things all sound like herpes. He was the one who talked me out of getting a swab of the paper cut I had on my penis because he said it did not look like enough material to collect. I have never had paper cuts on my penis, and I've had three painful ones since May.

A nurse at the ER looked at photos I have on my phone of the various bumps I have, and she thought some of them looked like herpes. She was also suspicious of the fever blister I had in my mouth.

 

[Ishmael]

18 hours ago, blurneworder said:

You are almost correct.

A doctor at urgent care told me these things all sound like herpes. He was the one who talked me out of getting a swab of the paper cut I had on my penis because he said it did not look like enough material to collect. I have never had paper cuts on my penis, and I've had three painful ones since May.

A nurse at the ER looked at photos I have on my phone of the various bumps I have, and she thought some of them looked like herpes. She was also suspicious of the fever blister I had in my mouth.

 

But that blister was swabbed and came back negative, right? When are you getting tested again? Western Blot?

[blurneworder]

Blister was negative, but I never know if it was swabbed too late or was nothing to worry about in the first place.

I'm not sure when my next test is. I have to try to convince my current doctor --who is already dismissive-- to approve the Western Blot for me to take.

My insurance changes in the new year, and I should have an easier time seeing the doctors I want to see. I might start back up with tests then.

[blurneworder]

UPDATE:

Saw my primary care doctor today. He admitted that he cannot understand why I'm having so many odd symptoms or why a girl I was seeing acquired similar symptoms from me. 

He said after examining the facts, he thinks I have caused my own nerves to become out of control, so he wants to prescribe me a medication to relax my nerves. I think that is a horrible diagnosis of such far reaching symptoms. 

He could not explain or attempt to explain why I:

Have white bumps on my top lip and why top lip is constantly chapped and the skin is cracked

Bleed from my mouth every night

Have paper cuts on my penis.

What there are clusters of itchy, red bumps on my inner groin that won't go away.

Have fullness in my ear

Why I am fatigued, feel a crawling sensation in my brain, and why I am feeling daily bouts of dizziness and confusion.

How I passed some symptoms on to another person.

[antifragile]

@blurneworder some of your symptoms sound very similar to mine: fever, cuts on penis, daily itching and prickly feeling, constant fatigue and brain fog. All started after unprotected oral. I've tested HPV & HSV-1 positivite. I've always had cold sores so HSV-1 doesn't tell me anything new. This might be some other virus that we are dealing with. Unfortunately it is obviously contagious and the symptoms don't seem to go away even after years.

 

[blurneworder]

20 minutes ago, antifragile said:

@blurneworder some of your symptoms sound very similar to mine: fever, cuts on penis, daily itching and prickly feeling, constant fatigue and brain fog. All started after unprotected oral. I've tested HPV & HSV-1 positivite. I've always had cold sores so HSV-1 doesn't tell me anything new. This might be some other virus that we are dealing with. Unfortunately it is obviously contagious and the symptoms don't seem to go away even after years.

 

I’ve not tested positive for HSV.

Have you passed it to anyone else?

How did you test positive for HPV?

[antifragile]

15 hours ago, blurneworder said:

I’ve not tested positive for HSV.

Have you passed it to anyone else?

How did you test positive for HPV?

I had visible genital warts, I got them burned off at three separate times over a year and they haven not come back since.

[antifragile]

15 hours ago, blurneworder said:

I’ve not tested positive for HSV.

Have you passed it to anyone else?

How did you test positive for HPV?

Well that's what I'm saying that I have HSV-1 but it might be only on my lips even though I've convinced myself that I have it also genitally. I just haven't found anything else that could explain the symptoms.

[blurneworder]

Update:

After twice testing positive for HSV in April, I tested negative this month.

Also, I've started to have sex for the first time since all of this happened. My glans have been red since April 2018 (the last time I had sex), but now they are becoming extremely red and sensitive to touch after having sex now. There is also a constant tingle in my urethra and the feeling of having to pee after sex. This lasts for 2-3 days. 

My glans have not responded to a myriad of creams, and Dermatologists and Urologists have all but given up on me.

[no_joyride]

Hey

What about yeast overgrowth?  It can cause a lot of those symptoms... try taking a really good probiotic.

I had burning my urethra (before the herpes nightmare that I am in now) for about 2 years along with a bladder spasm, in the end I was allergic to black tea which I have been drinking since I was 6.

Try looking a little bit wider.

Good luck!

[LoveTheMountains]

I don't know if this info will  make it better or worse for you. My H is something of an enigma. I 100% believe I have had it since I was 16. I was with a guy one time.  Found out he had H after.  I wasn't stressed because I really didn't know all that much about it and this was pre-internet days so no easy access to info, plus I was a teenager self absorbed with my life so didn't give it too much thought other than to get rid of the guy. (In other words I don't feel I was being a hypochondriac).  A week later, insane genital itching and bumps.  Over the next few months itchy welts on my chin/neck/back of legs that would come and go.  Some time over the year 1 itchy red welt on m eyelid. Dr. prescribed an ointment but told me nothing. Years later I was reading the package and it said for ocular herpes.  Started getting cold sores in those early years.  Never went to the dr bc I just was oblivious and was now insanely busy plus in serious relationship. Plus all the common place knowledge on herpes from my day was "you just live with it and don't have sex when you have outbreaks". 

Late 20's:  Occassional outbreaks over those years.  Lots of prodromols. I was single again, now lots of info online and figured I needed to find out my HSV type.  Dr. said no point in doing a blood test without an outbreak to swab, herpes was "so common" and a positive blood test wouldn't sayit was genital and not worth the stress people go through bc some many people have it. so I took her word and said ok.  

Early 30's; always told partners I have herpes. They never questioned for actual test results. Got a long term relationship and in our 4th year he said he had a bump near the base of his penis, he was too inhibited to show me. And again we were both practical people who were just like ok we both have herpes, get on with life. Over the years he'd occasionally get a bump again and itd go away.

Mid 30's now in another long-term relationship. Disclosed to that who wanted actual proof I had it (kinda weird bc he totally wanted to be with me but wanted the official papers to go with it lol). Did HSV 1, 2, and HPV test. all negative! I don't know what kind of test it was.  I basically told him I believed it was a false negative; I mean I've had outbreaks, prodromols etc!  Went on antivirals bc he didn't want to use condoms ever. 4 years later he had some itching and small bump at the head of his penis. We assumed that yes, he finally got it from me.  Our relationship eventually ended for other reasons.  

Hit my 40's, did a bunch of blood tests recently due to other health issues. Asked for HSv/HPV test just for the hell of it.  All negative!  My test info does not have any numbers like I read on here so I can't speak to that. I tried to argue with my dr about false negatives but she is very intimidating and basically cut me off saying "this proves you don't have it" and shut down the conversation 

At the end of the day, I know I have to have it. Outbreaks, prodromols, definite classic triggers (chocolate, nuts, stress), and 2 people who appear to have contracted it from me.  I'd like to take the western blot but not interested in paying for something that I know I have.   And I've read other people's stories on here who are in the same boat.  So I just live my life as if I do and always tell my partners. I couldn't in good conscience say I don't have it bc I know I do.

[blurneworder]

56 minutes ago, LoveTheMountains said:

I don't know if this info will  make it better or worse for you. My H is something of an enigma. I 100% believe I have had it since I was 16. I was with a guy one time.  Found out he had H after.  I wasn't stressed because I really didn't know all that much about it and this was pre-internet days so no easy access to info, plus I was a teenager self absorbed with my life so didn't give it too much thought other than to get rid of the guy. (In other words I don't feel I was being a hypochondriac).  A week later, insane genital itching and bumps.  Over the next few months itchy welts on my chin/neck/back of legs that would come and go.  Some time over the year 1 itchy red welt on m eyelid. Dr. prescribed an ointment but told me nothing. Years later I was reading the package and it said for ocular herpes.  Started getting cold sores in those early years.  Never went to the dr bc I just was oblivious and was now insanely busy plus in serious relationship. Plus all the common place knowledge on herpes from my day was "you just live with it and don't have sex when you have outbreaks". 

Late 20's:  Occassional outbreaks over those years.  Lots of prodromols. I was single again, now lots of info online and figured I needed to find out my HSV type.  Dr. said no point in doing a blood test without an outbreak to swab, herpes was "so common" and a positive blood test wouldn't sayit was genital and not worth the stress people go through bc some many people have it. so I took her word and said ok.  

Early 30's; always told partners I have herpes. They never questioned for actual test results. Got a long term relationship and in our 4th year he said he had a bump near the base of his penis, he was too inhibited to show me. And again we were both practical people who were just like ok we both have herpes, get on with life. Over the years he'd occasionally get a bump again and itd go away.

Mid 30's now in another long-term relationship. Disclosed to that who wanted actual proof I had it (kinda weird bc he totally wanted to be with me but wanted the official papers to go with it lol). Did HSV 1, 2, and HPV test. all negative! I don't know what kind of test it was.  I basically told him I believed it was a false negative; I mean I've had outbreaks, prodromols etc!  Went on antivirals bc he didn't want to use condoms ever. 4 years later he had some itching and small bump at the head of his penis. We assumed that yes, he finally got it from me.  Our relationship eventually ended for other reasons.  

Hit my 40's, did a bunch of blood tests recently due to other health issues. Asked for HSv/HPV test just for the hell of it.  All negative!  My test info does not have any numbers like I read on here so I can't speak to that. I tried to argue with my dr about false negatives but she is very intimidating and basically cut me off saying "this proves you don't have it" and shut down the conversation 

At the end of the day, I know I have to have it. Outbreaks, prodromols, definite classic triggers (chocolate, nuts, stress), and 2 people who appear to have contracted it from me.  I'd like to take the western blot but not interested in paying for something that I know I have.   And I've read other people's stories on here who are in the same boat.  So I just live my life as if I do and always tell my partners. I couldn't in good conscience say I don't have it bc I know I do.

It's strange timing that you wrote this because today I just found on I'm negative on the Western Blot.

Were your bumps sores or just bumps?

Did any of the guys you were with ever test positive for HSV? 

I still have the pain in my urethra and urge to pee. Lucky me, my Urologist and their entire office is gone during December.

[TreeHugger44]

On 12/3/2019 at 11:35 PM, blurneworder said:

It's strange timing that you wrote this because today I just found on I'm negative on the Western Blot.

Were your bumps sores or just bumps?

Did any of the guys you were with ever test positive for HSV? 

I still have the pain in my urethra and urge to pee. Lucky me, my Urologist and their entire office is gone during December.

Okay you're definitely negative for Herpes then, right?? Any idea of what it actually is then? Anything help? Trying to figure out what I have too, very similar.  I will say a very high quality probiotic has helped me

[blurneworder]

On 1/8/2020 at 6:28 PM, TreeHugger44 said:

Okay you're definitely negative for Herpes then, right?? Any idea of what it actually is then? Anything help? Trying to figure out what I have too, very similar.  I will say a very high quality probiotic has helped me

I'm not sure because my ex girlfriend (who did not have HSV before dating me) caught HSV from me.

The skin between my lip and nose keeps reacting strange after I shave that area. I recently had very red and sore skin next to my mouth, and a sore on at the entrance to my butt that I think was brought on by drinking coffee. I didn't have a chance to get anything swabbed.

[HopefulHerpy]

How is your vision?