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MikeIke

Ruined but no positive tests :(

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MikeIke

Serologic Herpes Testing in the Real World - San Francisco City Clinic
PDFSan Francisco City Clinic › providers › S...


hhttps://www.google.com/url?sa=t&source=web&rct=j&url=http://sfcityclinic.org/providers/Serologicherpestesting.pdf&ved=2ahUKEwits6LzsvzeAhUPx58KHYtZAHEQFjAAegQIBxAB&usg=AOvVaw1Lyjo_aYPaeLF72zTe4R9U

https://academic.oup.com/cid/article/35/Supplement_2/S173/315739

^some tests are called igg but not based on glycoprotein g, and aren't accurate. 

 

@WilsoInAus what is sensitivity vs specificity 

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WilsoInAus

Yes the papers all confirm a very high sensitivity for IgG testing making it the correct balance of cost and diagnostic power. When combined with swab testing of any lesions, the combined sensitivity is honing In on 100% after 4 months from possible infection.

If you wish to increase the sensitivity for a blood test in the US then you can obtain a Westernblot. 

In other countries, talk to your doctor about a herpes antigen lysate based test as I believe many labs have or can get hold of these worldwide.

Edited by WilsoInAus

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MikeIke

@WilsoInAus this blows. Finished a course of a zpak amd still getting neuralgia in the glans. It waxes and wanes with random shooting and stabbing pains similar to post herpetic neuralgia. Glans skin sensitive. Seems to be a case for hsv1 mimicking postherpetic neuralgia from shingles

https://www.ncbi.nlm.nih.gov/m/pubmed/1624816/

 

 

 

 

 

 

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sameer82
On 11/19/2018 at 3:42 AM, RainyDay2 said:

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.

 

I have the exact symptoms and i am testing negative for last 24 months since my possible exposure . i can relate almost all the symptoms like burning and shooting pain in different parts of body and also itching in anal and constipation and also pain and redness in eyes ..Well i had done 6 blood work in 2 years giving almost 4 months gap all turned negative ..i also tried one Swab test which also turned out negative ..Have you tried doing a swab test on the rashes on your penis ???

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sameer82

 

@RainyDay2 @Mikelke Below is my story if you guys can find any similarity to your rashes on glans penis do let me know ...

r

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WilsoInAus
8 hours ago, MikeIke said:

@WilsoInAus this blows. Finished a course of a zpak amd still getting neuralgia in the glans. It waxes and wanes with random shooting and stabbing pains similar to post herpetic neuralgia. Glans skin sensitive. Seems to be a case for hsv1 mimicking postherpetic neuralgia from shingles

https://www.ncbi.nlm.nih.gov/m/pubmed/1624816/

 

 

 

 

 

 

How can that be, where are your lesions for swabbing?

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MikeIke

No lesions that I can see - just redness + nerve pain 13 weeks out, worse when erect.  Ejaculation is painful near the tip.  Itchy thighs/testicles.  Thinking of retesting IGG today as I'm @ 13 weeks.  Also planned on ordering a PCR test kit and swabbing the glans.  Not sure what else to do besides WB soon. 

I did have 3 red patchy spots on my glans show up on my 9th day of Valtrex.  They were gone the next day after I used neem+coconut oil on them. I couldn't get a swab because I was on vacation. 

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WilsoInAus

That’s easy, you will get better when you stop chasing the elusive ghost of herpes fears.

only you can take control and make your life happen on your terms. 

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blurneworder
9 hours ago, sameer82 said:

I have the exact symptoms and i am testing negative for last 24 months since my possible exposure . i can relate almost all the symptoms like burning and shooting pain in different parts of body and also itching in anal and constipation and also pain and redness in eyes ..Well i had done 6 blood work in 2 years giving almost 4 months gap all turned negative ..i also tried one Swab test which also turned out negative ..Have you tried doing a swab test on the rashes on your penis ???

You and me are in the same boat!

Burning, itching in anus and groin. Nerve pain in left hand and foot. My eyes are in pain, itch, and very red.

I went to an eye specialist after my usual eye doctor checked my eyes for herpes and saw damage. She didn't see herpes, but said she's had cases of people with eye damage with no signs of herpes, but eventually test positive for it. The doctor sent me to an eye specialist to get an eye swab, but the specialist told me their office does not do that. She diagnosed me with pigment dispersion syndrome, but I find it suspect that the eye pain occurred among all these other mystery ailments. I wonder if an eye swab done on my eye when it first had pain would result in a positive or not.  The same doctor who told me they don't do swabs also told me 99% of people have herpes - yeah, not the case, but whatever. She was also blown away when I told her it can cause nerve damage.

The girl I used to date also has the same eye pain, white tingly bumps on her lip, and itching in the genitals like I have. She tested negative for HSV.

None of my blood work or swabs on suspect areas have came back positive. I have way more symptoms than I just listed, but this all happened after unprotected oral and vaginal sex.

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sameer82
19 hours ago, blurneworder said:

You and me are in the same boat!

Burning, itching in anus and groin. Nerve pain in left hand and foot. My eyes are in pain, itch, and very red.

I went to an eye specialist after my usual eye doctor checked my eyes for herpes and saw damage. She didn't see herpes, but said she's had cases of people with eye damage with no signs of herpes, but eventually test positive for it. The doctor sent me to an eye specialist to get an eye swab, but the specialist told me their office does not do that. She diagnosed me with pigment dispersion syndrome, but I find it suspect that the eye pain occurred among all these other mystery ailments. I wonder if an eye swab done on my eye when it first had pain would result in a positive or not.  The same doctor who told me they don't do swabs also told me 99% of people have herpes - yeah, not the case, but whatever. She was also blown away when I told her it can cause nerve damage.

The girl I used to date also has the same eye pain, white tingly bumps on her lip, and itching in the genitals like I have. She tested negative for HSV.

None of my blood work or swabs on suspect areas have came back positive. I have way more symptoms than I just listed, but this all happened after unprotected oral and vaginal sex.

i did had red eye with itchy and watery for two months until i taken antiviral for 10 days it improved a lot redness mostly gone itchy comes and goes and some times pins type pain but i have a very constant white discharge happening in my eyes both eyes and i also have floaters when i look at white background and very high pain and sensitivity to bright sky and outdoor ...What medication your eye doctor has prescribed for you ..Do you also get any pain in your left armpit ???

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RainyDay2

@sameer82 I only very recently got a small red rash looking spot near the base of my penis and the doctor said it didnt look like herpes.  Then it scabbed over and I went back in that day after I peeled the scab and had it PCR swabbed by another doctor who also said it didnt look like herpes.  Awaiting those results still. Thats the only thing thats ever appeared on my penis since this has all started.

The burning in my penis tip went away for about a week, and for the first time in a long time I felt almost completely normal, but now it’s back again just like I knew it would be.  

It just blows my mind that they can’t figure this out. Every STD test is still negative.  Urine sample is still negative. And I have to wait months to go see another urologist.  

But like I said, the only thing I know the girl had was herpes.  But its been almost 5 months now and I still have yet to get a herpes diagnosis.  

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sameer82
2 minutes ago, RainyDay2 said:

@sameer82 I only very recently got a small red rash looking spot near the base of my penis and the doctor said it didnt look like herpes.  Then it scabbed over and I went back in that day after I peeled the scab and had it PCR swabbed by another doctor who also said it didnt look like herpes.  Awaiting those results still. Thats the only thing thats ever appeared on my penis since this has all started.

The burning in my penis tip went away for about a week, and for the first time in a long time I felt almost completely normal, but now it’s back again just like I knew it would be.  

It just blows my mind that they can’t figure this out. Every STD test is still negative.  Urine sample is still negative. And I have to wait months to go see another urologist.  

But like I said, the only thing I know the girl had was herpes.  But its been almost 5 months now and I still have yet to get a herpes diagnosis.  

i also have similar issue i don t have any blisters type which has fluid to swab ..i get red rash which then just turns dark skin mark in that area and disappears ..last time i literally had to rub the swab so hard on one of the rashes which i thought had some fluid type and given for PCR swab and it turned out negative ..Have you taken antivirals any time ? i hope your swab result come back negative ..update on your get your results 

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RainyDay2

@sameer82 No never have taken antivirals.  They havent diagnosed me with anything, so all I can do is try to get a diagnosis.  Do you have burning pain in your penis after sex/ejaculation?  And are rashes tender when touched?  The one I got hurt a bit when I pressed it and rubbing against it irritated it a bit.  But yea no fluid was really present so it didnt look like typical herpes.  

And how long did it take to get your PCR results back?  Cause its been over a week for me. But thanks

 

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sameer82
2 minutes ago, RainyDay2 said:

@sameer82 No never have taken antivirals.  They havent diagnosed me with anything, so all I can do is try to get a diagnosis.  Do you have burning pain in your penis after sex/ejaculation?  And are rashes tender when touched?  The one I got hurt a bit when I pressed it and rubbing against it irritated it a bit.  But yea no fluid was really present so it didnt look like typical herpes.  

And how long did it take to get your PCR results back?  Cause its been over a week for me. But thanks

 

My rashes were not tender once the dermo doctor even tried to tried pressing it hard and it still stayed the same didn't break out or any fluid come out ..i got my PCR results in 2 days ..Not sure how long it takes in your part of the world ..yes i do get burning pain after i masturbate and when i urinate but its not very heavy its mild pain type but yes i do get it ..

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blurneworder
1 hour ago, sameer82 said:

i did had red eye with itchy and watery for two months until i taken antiviral for 10 days it improved a lot redness mostly gone itchy comes and goes and some times pins type pain but i have a very constant white discharge happening in my eyes both eyes and i also have floaters when i look at white background and very high pain and sensitivity to bright sky and outdoor ...What medication your eye doctor has prescribed for you ..Do you also get any pain in your left armpit ???

I did not have discharge or sensitivity to light.

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MikeIke

Dermatologist told me my pictures were all NOT herpes. Said he sees 0 signs of it. He's not sure what it is but is confident nothing is herpes. I showed him the picture of the vesicle on my lip too and he said it was a canker sore. 

I can keep chasing doctors but at this point my next step is a final herpeselect Igg at 13 weeks, and having a pcr kit ready for any further odd symptoms. Ill do a wb at 17 weeks. 

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MikeIke

Having second thoughts on letting it go. Daily it has been :

Mouth : redness around lips, lots of breakouts around lips, white skin crusting around lips

Penile Meatitis, redness, urethritis, glans sensitivity, dysuria, shooting pain from urethra, white peeling skin sometimes

New: fatigue, random skin depigmentation, pain spreading into butt as nerve pain

Girl i was with mentioned "the hsv blood tests are so inaccurate" - - how would she know this? Planning on asking once I know she won't lie. 

Next step is meeting with a new urologist. Retesting igg today 14 weeks. 

11 week igg and hiv was neg.

12 week igm was neg but may have waited too long. 

I just want to be normal again. 

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MikeIke

@WilsoInAus maybe. But you were part of that 3 year long thread of folks with the exact same symptoms as me. One of them finally got positive from a biopsy. 

What are your thoughts on immunoblot vs elisa? One study showed the former being more accurate. 

 

Having second thoughts on letting it go. Daily it has been :

Mouth : redness around lips, lots of breakouts around lips, white skin crusting around lips

Penile Meatitis, redness, urethritis, glans sensitivity, dysuria, shooting pain from urethra, white peeling skin sometimes

New: fatigue, random skin depigmentation, pain spreading into butt as nerve pain

Girl i was with mentioned "the hsv blood tests are so inaccurate" - - how would she know this? Planning on asking once I know she won't lie. 

Next step is meeting with a new urologist. Retesting igg today 14 weeks. 

11 week igg and hiv was neg.

12 week igm was neg but may have waited too long. 

I just want to be normal again. 

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