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blaze123

Diagnosis circus [Male]

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blaze123

Hi all.  Sorry in advance for the novel.  Looking for some help from others who might have been through a diagnostic circus like I have.  I tested positive via IGG for HSV2 about two weeks ago but, as I mention below, no one knows what to make of my symptoms….

To make a long story short, I've seen a horde of medical professionals: 3 nurse practitioners at a sexual health clinic, my family doc, an urgent care doc, two dermatologists, and a urologist. Every doctor thinks my symptoms are not due to HSV2, despite an eventual positive blood test.  I'd gladly accept that something else is going on and move on with my life … except that no one knows what to treat, so I'm still miserable, and worried it will get worse again before it gets better.  Any help or suggestions this community might have will be much appreciated!

About 10 weeks ago, a new partner performed oral sex on me.  A few days after, a "rash" (a small raised spot of rough skin) appeared on the shaft of my penis, and has been there since, with the following symptoms:

  • Weeks 1-2: mild itching, three docs think the rash looks like a mild yeast infection or just normal skin variation.
  • Week 3: mild itching starts to subside, a fourth doc looks and thinks it's nothing, says to see a dermatologist if I'm worried.
  • Weeks 4-6: Very bad burning pain (like a bad sunburn) on the left side of penis.  Dermatologists guess that it's an allergic reaction, put me on a steroid cream and Prednisone.  Family doc guesses that it could be shingles with an atypical or absent rash, but says too late for antivirals to be effective.
  • Week 7: The bad burning starts to subside, but now there is a spot with inflammation on the underside of the head of my penis (not really anything visible, but you can tell there's a raised spot).  It doesn't hurt, per se, but definitely feels uncomfortable and like it's swollen.  Dermatologist #2 is baffled and prescribes doxyclene (antibiotic) as a shot in the dark.  I basically bully my family doc into prescribing valacyclovir at the shingles dose (3g per day), since that's her only guess as to what's going on.
  • Week 8: The sunburn-ish starts fading pretty rapidly, but the underside of the head of my penis (sort of along where you can see the urethral tube) is still inflamed and uncomfortable.  See the family doc again, who runs bloodwork for every conceivable thing (hep B, C, HIV, HSV, the works).  Everything comes back negative except HSV2, which family doc thinks is an old infection ("you've probably had it for years") due to negative IGM and a high positive IGG. [Since my new partner only performed oral sex, this being an old infection seems like it could be right, given the odds of me getting HSV2 from an asymptomatic mouth are somewhere between very unlikely and virtually impossible.]
  • Week 9: Sunburn-ish pain is gone, but still have inflamed underside and now some tingling in my left thigh.  Start taking valacyclovir at suppressive dose (1g per day).  I finally can get in to see a urologist, whose best guess is that the tingling is post-herpetic nerve pain and that the swelling is nerve damage.  She thinks shingles more likely than it being HSV2 due to (1) duration of symptoms; (2) lack of lesions -- she is sure the "rash" is actually just lichen planus; (3) and, according to her, my description matching exactly with having shingles in the area.  (Urologist recommended against doing a scope, but did a thorough physical exam including feeling the swollen spot under the head of my penis with her bare hand.)
  • Week 10: Started gabapentin, in addition to the suppressive valacylovir.  It's helped with the tingling, but still inflamed on the underside of my penis.  After getting better a few days, today it is swollen as bad as it has been, and there is some discomfort (but not really pain) when I urinate.

The "rash" has looked exactly the same this whole time.  Just some raised, rough skin.  Not fluid-filled, not ulceric, and every doc that has looked says it doesn't look herpetic.  (One said, "I've been doing this 33 years, and I've seen plenty of herpes, and that ain't herpes!").  Also, I've had urine (urinalysis + typical STI checks) and blood-work (CBC, metabolic, plus STI) run by one of the various docs basically once a week this entire time, and the HSV2 IGG was the only thing out of the ordinary.

Has anyone been through something like this and have advice on what my next steps should be?  Or have thoughts on what to make of this whole ordeal?  Any and all advice welcome.

 

 

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sameer82
1 hour ago, blaze123 said:

Hi all.  Sorry in advance for the novel.  Looking for some help from others who might have been through a diagnostic circus like I have.  I tested positive via IGG for HSV2 about two weeks ago but, as I mention below, no one knows what to make of my symptoms….

To make a long story short, I've seen a horde of medical professionals: 3 nurse practitioners at a sexual health clinic, my family doc, an urgent care doc, two dermatologists, and a urologist. Every doctor thinks my symptoms are not due to HSV2, despite an eventual positive blood test.  I'd gladly accept that something else is going on and move on with my life … except that no one knows what to treat, so I'm still miserable, and worried it will get worse again before it gets better.  Any help or suggestions this community might have will be much appreciated!

About 10 weeks ago, a new partner performed oral sex on me.  A few days after, a "rash" (a small raised spot of rough skin) appeared on the shaft of my penis, and has been there since, with the following symptoms:

  • Weeks 1-2: mild itching, three docs think the rash looks like a mild yeast infection or just normal skin variation.
  • Week 3: mild itching starts to subside, a fourth doc looks and thinks it's nothing, says to see a dermatologist if I'm worried.
  • Weeks 4-6: Very bad burning pain (like a bad sunburn) on the left side of penis.  Dermatologists guess that it's an allergic reaction, put me on a steroid cream and Prednisone.  Family doc guesses that it could be shingles with an atypical or absent rash, but says too late for antivirals to be effective.
  • Week 7: The bad burning starts to subside, but now there is a spot with inflammation on the underside of the head of my penis (not really anything visible, but you can tell there's a raised spot).  It doesn't hurt, per se, but definitely feels uncomfortable and like it's swollen.  Dermatologist #2 is baffled and prescribes doxyclene (antibiotic) as a shot in the dark.  I basically bully my family doc into prescribing valacyclovir at the shingles dose (3g per day), since that's her only guess as to what's going on.
  • Week 8: The sunburn-ish starts fading pretty rapidly, but the underside of the head of my penis (sort of along where you can see the urethral tube) is still inflamed and uncomfortable.  See the family doc again, who runs bloodwork for every conceivable thing (hep B, C, HIV, HSV, the works).  Everything comes back negative except HSV2, which family doc thinks is an old infection ("you've probably had it for years") due to negative IGM and a high positive IGG. [Since my new partner only performed oral sex, this being an old infection seems like it could be right, given the odds of me getting HSV2 from an asymptomatic mouth are somewhere between very unlikely and virtually impossible.]
  • Week 9: Sunburn-ish pain is gone, but still have inflamed underside and now some tingling in my left thigh.  Start taking valacyclovir at suppressive dose (1g per day).  I finally can get in to see a urologist, whose best guess is that the tingling is post-herpetic nerve pain and that the swelling is nerve damage.  She thinks shingles more likely than it being HSV2 due to (1) duration of symptoms; (2) lack of lesions -- she is sure the "rash" is actually just lichen planus; (3) and, according to her, my description matching exactly with having shingles in the area.  (Urologist recommended against doing a scope, but did a thorough physical exam including feeling the swollen spot under the head of my penis with her bare hand.)
  • Week 10: Started gabapentin, in addition to the suppressive valacylovir.  It's helped with the tingling, but still inflamed on the underside of my penis.  After getting better a few days, today it is swollen as bad as it has been, and there is some discomfort (but not really pain) when I urinate.

The "rash" has looked exactly the same this whole time.  Just some raised, rough skin.  Not fluid-filled, not ulceric, and every doc that has looked says it doesn't look herpetic.  (One said, "I've been doing this 33 years, and I've seen plenty of herpes, and that ain't herpes!").  Also, I've had urine (urinalysis + typical STI checks) and blood-work (CBC, metabolic, plus STI) run by one of the various docs basically once a week this entire time, and the HSV2 IGG was the only thing out of the ordinary.

Has anyone been through something like this and have advice on what my next steps should be?  Or have thoughts on what to make of this whole ordeal?  Any and all advice welcome.

 

So your HSV2 IGG says its positive can you share what is the titre range mentioned in your blood work ...

 

I also face similar issue i also have my skin discoloration at shaft of the penis i am dark skinned and it turned totally white on the left side of the shaft .

Edited by sameer82

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jingle
  1. You have HSV 2 according to the blood test result - why do you think you may not have it?
  2. You have symptoms that could be due to something else.
    1. Next time you see a rash, burning, itching on genital area - get an HSV PCR swab done on it as soon as possible (order one from www.selfcollect.com or www.mylabbox.com so you have it handy)
    2. Also get a fungal/yeast culture swab done of the rash/itching
    3. And a bacterial culture swab done of the rash/itching

This should help confirm if your symptoms are due to HSV or yeast or bacteria. Irrespective of whatever's causing your symptoms, you likely do have HSV2 according to the blood test. And if you do not believe the blood test, get a Western Blot for HSV done by University of Washington.

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blaze123

Just to be clear, I totally believe I do have HSV2! I don’t doubt the blood test and assume it is right. But my doctors seem to think that is *not* what is causing these symptoms.  So that’s why I’m asking if it’s consistent with what others have been through.

I’ve repeatedly asked about a swab or biopsy, and been told every time there’s nothing abnormal to swab or biopsy.  I can push harder on the swab.

To answer the earlier question, I don’t have the titer numbers from the IGG, other than to know it was “high” and that the IGM was negative. 

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Raymon98989

Bro the same thing is happening to me. No sores. Just super rough looking on my scrotum. I will probably be committing suicide soon. Good luck to you.

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blurneworder
6 minutes ago, Raymon98989 said:

Bro the same thing is happening to me. No sores. Just super rough looking on my scrotum. I will probably be committing suicide soon. Good luck to you.

Is just your scrotum affected?

Don’t let this disease cause suicidal thoughts. If we all killed our selves because of this, there would be nobody around to provide support.

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blaze123
9 hours ago, Raymon98989 said:

Bro the same thing is happening to me. No sores. Just super rough looking on my scrotum. I will probably be committing suicide soon. Good luck to you.

Hey buddy, no reason to think about ending things -- especially over a rough-looking ballsack.  I've never seen one that's a work of art. 

(Seriously, though, worrying about this can be a real bummer, but it's not something life-ending or life-ruining.  Billions of people have HSV!  You'll be okay.)

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MikeIke
19 hours ago, jingle said:
  1. You have HSV 2 according to the blood test result - why do you think you may not have it?
  2. You have symptoms that could be due to something else.
    1. Next time you see a rash, burning, itching on genital area - get an HSV PCR swab done on it as soon as possible (order one from www.selfcollect.com or www.mylabbox.com so you have it handy)
    2. Also get a fungal/yeast culture swab done of the rash/itching
    3. And a bacterial culture swab done of the rash/itching

This should help confirm if your symptoms are due to HSV or yeast or bacteria. Irrespective of whatever's causing your symptoms, you likely do have HSV2 according to the blood test. And if you do not believe the blood test, get a Western Blot for HSV done by University of Washington.

@jingle how do you know selfcollect is pcr? it mentions little about the testing methodology.

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Gems
On 12/1/2018 at 8:40 AM, blaze123 said:

Just to be clear, I totally believe I do have HSV2! I don’t doubt the blood test and assume it is right. But my doctors seem to think that is *not* what is causing these symptoms.  So that’s why I’m asking if it’s consistent with what others have been through.

I’ve repeatedly asked about a swab or biopsy, and been told every time there’s nothing abnormal to swab or biopsy.  I can push harder on the swab.

To answer the earlier question, I don’t have the titer numbers from the IGG, other than to know it was “high” and that the IGM was negative. 

I also had this issue. Swabs aren't accurate either. I was facing a SKIN biopsy. I didnt do it cos it didnt matter. Your doctor is a moron. He should be fired. It is a circus the more I read this forum I want to cry. I am writing to the ethics community of Maryland University as they are the only place that recognises herpes can be transmitted on towels etc. I am linking this thread. The ignorance in the medical community is astounding. I agree with the poster to try to get swabs to ID the nature of the infection. Sexual history should absolutely be part of the puzzle for further testing. I was even nervous for the skin biopsy and was considering downing multiple coffees and a bunch of chocolate for days to help get extra shedding. I suspect there is a lot these morons do not know about this disease.

The more I read these thread I want to cry. 

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joescrilla
On 11/30/2018 at 4:40 PM, blaze123 said:

Just to be clear, I totally believe I do have HSV2! I don’t doubt the blood test and assume it is right. But my doctors seem to think that is *not* what is causing these symptoms.  So that’s why I’m asking if it’s consistent with what others have been through.

I’ve repeatedly asked about a swab or biopsy, and been told every time there’s nothing abnormal to swab or biopsy.  I can push harder on the swab.

To answer the earlier question, I don’t have the titer numbers from the IGG, other than to know it was “high” and that the IGM was negative. 

My symptoms are very similar. I don't deal with any lesions or open wounds just dry skin on the shaft of my penis that won't go away. It drives me crazy! It gets better for a couple days then returns. What's even crazier is that both partners that I've been with over the last few years received negative blood tests for both hsv1 and hsv2. We've had numerous unprotected encounters and neither of them tested positive. My results were negative for hsv1 and positive for hsv2 with an igg reading of 2.74. I question the accuracy of my results

Edited by joescrilla

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Gems
26 minutes ago, joescrilla said:

Looking for some advice

follow Mikelke's post. It has links in there to a longstanding thread.

could b a-typical. some never know and appear fine. some eventually find it. 

no need to stress just read throu all the threads. Mikelke's may be helpful as it has a link to another similar longstanding one. some peeps take 12 months to get a pos. ive read of peeps having to do biopsy. its straight forward for most - but not all.

im seeing a lot of these.

do yuor other ex's have symtoms is all i can also suggest asking.

im freaked out by virus and the nature of disease today.

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Gems
32 minutes ago, joescrilla said:

Looking for some advice

no freaking out. just read access. prob you are fine.

maybe might agree with sum of wilsonaus has to say...but not all....

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Gems
On 11/30/2018 at 4:31 PM, blaze123 said:

Hi all.  Sorry in advance for the novel.  Looking for some help from others who might have been through a diagnostic circus like I have.  I tested positive via IGG for HSV2 about two weeks ago but, as I mention below, no one knows what to make of my symptoms….

To make a long story short, I've seen a horde of medical professionals: 3 nurse practitioners at a sexual health clinic, my family doc, an urgent care doc, two dermatologists, and a urologist. Every doctor thinks my symptoms are not due to HSV2, despite an eventual positive blood test.  I'd gladly accept that something else is going on and move on with my life … except that no one knows what to treat, so I'm still miserable, and worried it will get worse again before it gets better.  Any help or suggestions this community might have will be much appreciated!

About 10 weeks ago, a new partner performed oral sex on me.  A few days after, a "rash" (a small raised spot of rough skin) appeared on the shaft of my penis, and has been there since, with the following symptoms:

  • Weeks 1-2: mild itching, three docs think the rash looks like a mild yeast infection or just normal skin variation.
  • Week 3: mild itching starts to subside, a fourth doc looks and thinks it's nothing, says to see a dermatologist if I'm worried.
  • Weeks 4-6: Very bad burning pain (like a bad sunburn) on the left side of penis.  Dermatologists guess that it's an allergic reaction, put me on a steroid cream and Prednisone.  Family doc guesses that it could be shingles with an atypical or absent rash, but says too late for antivirals to be effective.
  • Week 7: The bad burning starts to subside, but now there is a spot with inflammation on the underside of the head of my penis (not really anything visible, but you can tell there's a raised spot).  It doesn't hurt, per se, but definitely feels uncomfortable and like it's swollen.  Dermatologist #2 is baffled and prescribes doxyclene (antibiotic) as a shot in the dark.  I basically bully my family doc into prescribing valacyclovir at the shingles dose (3g per day), since that's her only guess as to what's going on.
  • Week 8: The sunburn-ish starts fading pretty rapidly, but the underside of the head of my penis (sort of along where you can see the urethral tube) is still inflamed and uncomfortable.  See the family doc again, who runs bloodwork for every conceivable thing (hep B, C, HIV, HSV, the works).  Everything comes back negative except HSV2, which family doc thinks is an old infection ("you've probably had it for years") due to negative IGM and a high positive IGG. [Since my new partner only performed oral sex, this being an old infection seems like it could be right, given the odds of me getting HSV2 from an asymptomatic mouth are somewhere between very unlikely and virtually impossible.]
  • Week 9: Sunburn-ish pain is gone, but still have inflamed underside and now some tingling in my left thigh.  Start taking valacyclovir at suppressive dose (1g per day).  I finally can get in to see a urologist, whose best guess is that the tingling is post-herpetic nerve pain and that the swelling is nerve damage.  She thinks shingles more likely than it being HSV2 due to (1) duration of symptoms; (2) lack of lesions -- she is sure the "rash" is actually just lichen planus; (3) and, according to her, my description matching exactly with having shingles in the area.  (Urologist recommended against doing a scope, but did a thorough physical exam including feeling the swollen spot under the head of my penis with her bare hand.)
  • Week 10: Started gabapentin, in addition to the suppressive valacylovir.  It's helped with the tingling, but still inflamed on the underside of my penis.  After getting better a few days, today it is swollen as bad as it has been, and there is some discomfort (but not really pain) when I urinate.

The "rash" has looked exactly the same this whole time.  Just some raised, rough skin.  Not fluid-filled, not ulceric, and every doc that has looked says it doesn't look herpetic.  (One said, "I've been doing this 33 years, and I've seen plenty of herpes, and that ain't herpes!").  Also, I've had urine (urinalysis + typical STI checks) and blood-work (CBC, metabolic, plus STI) run by one of the various docs basically once a week this entire time, and the HSV2 IGG was the only thing out of the ordinary.

Has anyone been through something like this and have advice on what my next steps should be?  Or have thoughts on what to make of this whole ordeal?  Any and all advice welcome.

 

 

blaze if you havent worked it out join mikelke s thread. he is following a diagnostic process.

so shld evryone
https://honeycomb.click/topic/77141-ruined-but-no-positive-tests/
 

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