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MikeIke

Ruined but no positive tests :(

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MikeIke

Exposed 9/4-9/10 from someone who KNOWINGLY had hsv1/2 and "didn't think to tell" me.

Immediate symptoms (around 9/10):

  • Penile only Balanitis, redness on glans, burning in genital area, shooting pain pain into glans/corona, NO sores/shedding/crusting.
  • Elsewhere: felt flu like, lower back pain, random nerve oddities down leg and around lips.

Nystatin/azoles/diflucan/antibiotic shot all fail. Steroids+hot shower seem to help. Pain/flare up during ejaculation, not much pain urinating at all.

Told by ALL docs was fungal/contact dermatitis/psychosomatic. glans redness with a couple of "red spots" on corona that I was told were normal.

Cleared by derm MD, derm NP 2nd opinion, ER doc, urologist MD, primary care NP.  The penis glans only had redness and some slight swelling in the corona.

Other symptoms: Urethral pain / shooting pain out to glans (feels like nerve pain), irritation at end of urethra as well. Radiating pain from "inside" to outside.  Glans skin feels EXTREMELY sensitive

Timeline:

9/12: See ER and Urologist MD, both tell me it looks fungal / almost normal penis.  Not thinking herpes but we do some blood work. 

9/15: HSV IGG negative HIV AB 4th gen negative

9/25: See Dermatologist MD and NP - both tell me penis looks irritated but normal - just either fungal or contact dermatitis

10/15: HSV IGG < .9 negative HIV AB 4th gen negative

11/5 :Try Neem Oil + coconut oil on penile head, makes it look almost normal again.  Still getting off and on burning everyday. 

11/9: mouth suddenly feels irritated/tingly - area outside my lip breaks out with vesicle like sores - irritation then brown little vesicle. 2 ON the lower lip, 3 clustered around it. NEVER happened before in entire life.  Online MD thinks it looks like Herpes

Primary care doc (a DO) examines me in person, calls it for herpes and gives me valtrex 10 day course. Said looked like same brown vesicles she sees on a vagina. Says penile pain must be urethral herpes.

11/11: started Valtrex 10 day course (1g 2x a day)

11/12: retest HSV IGG <.8 negative (value under .2 for HSV 1 and 2) HIV AB 4th gen negative, Urethral swab comes back negative

Also started taking:

-Vitamin D 6000 IU

-OLEA 4.5g/day

-Lysine - 2-5g a day

-Glutathione - 500mg a day

-Monolaurin - 750mg twice a day

-Lysine ointment for lips

11/13: Got some immediately brown crusted looking things on my lower lip

11/16: penile pain mostly gone, mouth lesions mostly gone

11/20: Penis pain is almost gone but nothing feels normal or great.  Very sore all over - lower back etc.  Concerned about breakouts once I stop the 10 day course.  Have people interested in dating me, which is a cruel joke at this point.
 

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WilsoInAus

There’s plenty going on for your genital area here, but I think you’re looking at the wrong things. It’s very easy to get carried away with possibilities.

I think you appreciate that HIV does not cause those sorts of genital symptoms at all.

Herpes will also tend not to cause these symptoms either.

A 12 week IgG test for HSV will be conclusive. This will be negative for you.

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RainyDay2

I was exposed to HSV 2 in July.  Pretty much have the same symptoms as you.  Penis tip burning for months. Burning comes and goes. Lower back pain on and off.  Nerve burning sensations once in awhile.  I also have anal itchiness and was constipated for weeks following expsoure.  Have tested negative IGG every time.  11 days,  6 weeks, 3 months and 4 months.  

I want to believe in the IGG test, but how can I? when doctors have no answer and no solution for these symptoms, and they all started after my exposure.  

A urologist told me it had to be my soap, or laundry detergent and to try different underwear.  Like seriously?  Ive been using the same soap and laundry detergent for at least 15 years now and all of a sudden, COINCIDENTALLY, right after i try to have sex with someone with HSV, my soap is causing my penis to burn everyday?

But yet he had no explanation for the nerve pains elsewhere in my body.

Im willing to bet @MikeIke that you will continue to test negative through IGG.  Just like me.

But here are the facts.  

We both were exposed to HSV.  

We both have common symptoms that started after being exposed to HSV.

So if we do not have HSV, then what is it that we both have in common that would cause these exact problems in two completely different human bodies?  

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MikeIke

@RainyDay2 i am about to pull out the big bht guns. Hey if i can get rid of the symptoms forever and never blow positive, ill take it.

My other thought was hpv but i know i was exposed. The last clinician i saw definitely thought my lip things looked herpetic and sajd she's seen urethral herpes before too. 

 

Igg can be forever negative in some, i have heard hsv1 has less accuracy with igg

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WilsoInAus

Herpes is not some default magic rabbit that comes out of the hat and makes sense out of the irrational.

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WilsoInAus
Just now, MikeIke said:

@RainyDay2 i am about to pull out the big bht guns. Hey if i can get rid of the symptoms forever and never blow positive, ill take it.

My other thought was hpv but i know i was exposed. The last clinician i saw definitely thought my lip things looked herpetic and sajd she's seen urethral herpes before too. 

 

Igg can be forever negative in some, i have heard hsv1 has less accuracy with igg

That’s incorrect for recent infections where it nears 100%. Those people have a positive swab.

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RainyDay2

The sad part is I was exposed to HSV 2 so judging by what information Im told, If I had herpes mine would almost definitely show up on an IGG test by now.  Supposedly I’d have less than an 8% chance of it not showing up on a blood test.

All I can do is go off the information Im given.  

My thing is this: I need to know what is causing this.  If the medical world wants to tell me that I dont have herpes, fine.  What is it that I have then? And how do I get rid of it?

Otherwise, being negative for herpes means nothing to me.  Because Im still positive for something, and they cant even figure out what the hell it is!

Because my body definitely changed after I was exposed to it.

 

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WilsoInAus

But you were probably also exposed to HSV-1,2,3,4,5,6ab,7,8. There are also about 80 other human viruses and you would have been exposed to a dozen of those.

There are tens of different bacteria that also transmit during sexual activity.

There are also hundreds of possible  causes generated with your body.

 

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MikeIke
2 hours ago, WilsoInAus said:

That’s incorrect for recent infections where it nears 100%. Those people have a positive swab.

Ok that's fair.  I'm not sure why she didn't swab my mouth, but she did warn me that the penis swab could be negative if it couldn't get deep enough.  I would be more optimistic if I didn't keep getting get brown looking things on my lips.

I could go gold standard and do western blot at Washington, but trying to wait the max 3-4 months time. 

I was told that the nerve/shooting pain in the glans area can  be herpetic

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WilsoInAus

Hey @MikeIke. I do think people overlook the cumulative effect of:

- no positive swab; plus

- negative IgG.

Which reduces chances to negligible. Adding symptoms that have a low percentage chance of occurring adds little to a reverse engineered diagnosis.

Remember 99%+ of men just wake up and go “what are these itchy sores on my junk” swab positive or test positive on IgG.

Brown looking things sounds strange, especially for herpes.

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MikeIke
21 minutes ago, WilsoInAus said:

Hey @MikeIke. I do think people overlook the cumulative effect of:

- no positive swab; plus

- negative IgG.

Which reduces chances to negligible. Adding symptoms that have a low percentage chance of occurring adds little to a reverse engineered diagnosis.

Remember 99%+ of men just wake up and go “what are these itchy sores on my junk” swab positive or test positive on IgG.

Brown looking things sounds strange, especially for herpes.

True but if there's nothing to swab you won't catch anything.  IgG stats seem to be by 2 weeks 50% of people seroconvert, by 6 weeks 70% of people.  I took it last at 8-9 weeks, so I'm 70% covered? https://cdn.ymaws.com/www.nursepractitionersoforegon.org/resource/collection/4E809DBB-34E6-41C5-AAF6-6003CA18AD13/NPO2015-Presentation-211.pdf

Thoughts?

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WilsoInAus

Well it’s the nothing to swab part that’s as informative as a negative IgG.

The 90% mark is reached at week 8.

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MikeIke

@WilsoInAus I appreciate your help by the way!

 
 

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Hopetohelp

Guys check out my post from a few years ago. 

‘You both sound like you could have pelvic floor dysfunction.  Men, especially after stressful encounters, subconsciously and involuntarily clench pelvic floor muscles which pinch nerves causing radiating genital pain.  I suffered for ten months, it was hell. Penis was red and inflamed looking, had back and buttocks pain, all testing was negative. 

‘I found a specialized physical therapist who helped me. 

Good luck 

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MikeIke
1 hour ago, Hopetohelp said:

Guys check out my post from a few years ago. 

‘You both sound like you could have pelvic floor dysfunction.  Men, especially after stressful encounters, subconsciously and involuntarily clench pelvic floor muscles which pinch nerves causing radiating genital pain.  I suffered for ten months, it was hell. Penis was red and inflamed looking, had back and buttocks pain, all testing was negative. 

‘I found a specialized physical therapist who helped me. 

Good luck 

@Hopetohelp Thanks. I've had pelvic floor dysfunction for 9+ years actually.  I used to go to PT for it but gave up.  When I release my pelvic floor muscle it spasms. 

The red+burning+glans nerve pain+ sudden lip pustules+pustules around lip are concerning me though. 

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RainyDay2

@WilsoInAus I have come across one too many stories on this forum and others where a person has tested positive for HSV by either PCR or culture swab but will repeatedly have negative IGG blood tests. 

@Birk.neg25 was recently one such person who has testified to such that I cam across on this site in another topic. He even took a WB and it came back negative, yet his PCR swab was positive.

Even those who people have been referred to as “experts” on HSV (such as Terri Warren) have admitted that some people will always test negative by IGG even though they may indeed be infected with the virus.

That to me is unacceptable.  Just imagine if a car manufacturer produced a car and they promised only 95% of the cars made will have brakes that operate all the time, but 5% of the cars brakes will always fail.

Do you think people would trust that car?  Do you think the car company would still produce it?

You and I both know the IGG test can fail. But yet you are asking me to trust a test?

Now you say that there is about a 1% chance of this happening with the IGG blood test?  But can you really be certain of that number?

Have you yourself ever seen or done the research to get these numbers?

Unlike most people that come here, I know for certain the person I tried to sleep with has HSV2.  My problems began within 2 days after the exposure.  No other known STD that I could find besides herpes has symptoms that start within that timeframe.

Every single one of my symptoms can be tied back to herpes.  It is the only STD that can account for everything I have felt since I was exposed.

I want to believe I am negative, but when I have every plausible reason to believe otherwise, you have to start to ask yourself, what if that IGG test isn’t as trustworthy as they say it is?

Imagine if HIV testing was as unreliable as this?  

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WilsoInAus

@RainyDay2 herpes testing is amongst the most accurate for any disease. 

There are a handful of people who do inot test positive on IgG or even Westernblot.

Yet you ignore the most important fact of all. Herpes testing is swabbing plus blood.

The probability you are seeking is that chance of not being able to test positive on a swab AND negative blood.

There is not 1 person on this website that has gone more than 11 months without testing positive on something for HSV 1/2nand 99.99% are within 4 months. 

That’s as accurate as HIV testing - WOW!

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blurneworder
22 hours ago, MikeIke said:

Exposed 9/4-9/10 from someone who KNOWINGLY had hsv1/2 and "didn't think to tell" me.

Immediate symptoms (around 9/10):

  • Penile only Balanitis, redness on glans, burning in genital area, shooting pain pain into glans/corona, NO sores/shedding/crusting.
  • Elsewhere: felt flu like, lower back pain, random nerve oddities down leg and around lips.

Nystatin/azoles/diflucan/antibiotic shot all fail. Steroids+hot shower seem to help. Pain/flare up during ejaculation, not much pain urinating at all.

Told by ALL docs was fungal/contact dermatitis/psychosomatic. glans redness with a couple of "red spots" on corona that I was told were normal.

Cleared by derm MD, derm NP 2nd opinion, ER doc, urologist MD, primary care NP.  The penis glans only had redness and some slight swelling in the corona.

Other symptoms: Urethral pain / shooting pain out to glans (feels like nerve pain), irritation at end of urethra as well. Radiating pain from "inside" to outside.  Glans skin feels EXTREMELY sensitive

Timeline:

9/12: See ER and Urologist MD, both tell me it looks fungal / almost normal penis.  Not thinking herpes but we do some blood work. 

9/15: HSV IGG negative HIV AB 4th gen negative

9/25: See Dermatologist MD and NP - both tell me penis looks irritated but normal - just either fungal or contact dermatitis

10/15: HSV IGG < .9 negative HIV AB 4th gen negative

11/5 :Try Neem Oil + coconut oil on penile head, makes it look almost normal again.  Still getting off and on burning everyday. 

11/9: mouth suddenly feels irritated/tingly - area outside my lip breaks out with vesicle like sores - irritation then brown little vesicle. 2 ON the lower lip, 3 clustered around it. NEVER happened before in entire life.  Online MD thinks it looks like Herpes

Primary care doc (a DO) examines me in person, calls it for herpes and gives me valtrex 10 day course. Said looked like same brown vesicles she sees on a vagina. Says penile pain must be urethral herpes.

11/11: started Valtrex 10 day course (1g 2x a day)

11/12: retest HSV IGG <.8 negative (value under .2 for HSV 1 and 2) HIV AB 4th gen negative, Urethral swab comes back negative

Also started taking:

-Vitamin D 6000 IU

-OLEA 4.5g/day

-Lysine - 2-5g a day

-Glutathione - 500mg a day

-Monolaurin - 750mg twice a day

-Lysine ointment for lips

11/13: Got some immediately brown crusted looking things on my lower lip

11/16: penile pain mostly gone, mouth lesions mostly gone

11/20: Penis pain is almost gone but nothing feels normal or great.  Very sore all over - lower back etc.  Concerned about breakouts once I stop the 10 day course.  Have people interested in dating me, which is a cruel joke at this point.
 

I am going through similar problems to you. Nobody has offered a solution yet. All of my problems happened after unprotected sex and oral with a girl who was not sure if she had HSV. Her only indication of possibly having HSV were pimples on her vagina, which I have learned some people with HSV have pimple-like bumps on their vagina. I now get pimples in my groin in the same spots - this never happened  to me in my life until after unprotected sex.

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MikeIke

Despite being on valtrex 2g a day for a week now, + natural stuff above, glans broke out with 3 obvious red marks/bumps today that were never there before.  Beginning to get some light itching as well + more random pain today :( .

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blurneworder
4 hours ago, RainyDay2 said:

@WilsoInAus I have come across one too many stories on this forum and others where a person has tested positive for HSV by either PCR or culture swab but will repeatedly have negative IGG blood tests. 

@Birk.neg25 was recently one such person who has testified to such that I cam across on this site in another topic. He even took a WB and it came back negative, yet his PCR swab was positive.

Even those who people have been referred to as “experts” on HSV (such as Terri Warren) have admitted that some people will always test negative by IGG even though they may indeed be infected with the virus.

That to me is unacceptable.  Just imagine if a car manufacturer produced a car and they promised only 95% of the cars made will have brakes that operate all the time, but 5% of the cars brakes will always fail.

Do you think people would trust that car?  Do you think the car company would still produce it?

You and I both know the IGG test can fail. But yet you are asking me to trust a test?

Now you say that there is about a 1% chance of this happening with the IGG blood test?  But can you really be certain of that number?

Have you yourself ever seen or done the research to get these numbers?

Unlike most people that come here, I know for certain the person I tried to sleep with has HSV2.  My problems began within 2 days after the exposure.  No other known STD that I could find besides herpes has symptoms that start within that timeframe.

Every single one of my symptoms can be tied back to herpes.  It is the only STD that can account for everything I have felt since I was exposed.

I want to believe I am negative, but when I have every plausible reason to believe otherwise, you have to start to ask yourself, what if that IGG test isn’t as trustworthy as they say it is?

Imagine if HIV testing was as unreliable as this?  

I feel the same way you do about blood tests

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WilsoInAus
13 minutes ago, blurneworder said:

I feel the same way you do about blood tests

They’re blood tests, there is no need to feel anything about them. They are what they are and the stats are known.

Your testing is conclusive, you do  it have herpes.

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ExhaustedGirl1
2 hours ago, MikeIke said:

Despite being on valtrex 2g a day for a week now, + natural stuff above, glans broke out with 3 obvious red marks/bumps today that were never there before.  Beginning to get some light itching as well + more random pain today :( .

So go get them PCR swabbed tonight. I think the fact that these showed up while on a high dose of valtrex is pretty telling that it’s not herpes but you should get swabbed if you have visible symptoms. 

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MikeIke
36 minutes ago, ExhaustedGirl1 said:

So go get them PCR swabbed tonight. I think the fact that these showed up while on a high dose of valtrex is pretty telling that it’s not herpes but you should get swabbed if you have visible symptoms. 

Im out of state and couldn't get into a clinic before my flight home :(. My appt is next Monday though, i will keep you posted. 

 

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