herpes? not to sound cliche....

[larry123456]

I've been through all the posts and seen others obsessing, just as I have been, that they have herpes... here's my story and any advice is appreciated.

Nov 1 - Like an idiot, had unprotected sex with a "friend" I'd known for years, thinking it was safe.

Nov 11 - Start getting itchy and irritation on penis

Nov 15 - Go in to Planned Parenthood for STD test

Nov 18 - A few red bumps appear in rash on foreskin, Planned Parenthood calls and says I'm positive for chlamydia, I take 1g Zythromax

Nov 19 - A couple more raised red bumps appear on penis head

Nov 20 - Talk to "friend" and mention chlamydia... she mentions she has herpes too, but says it's not contagious if she's not breaking out (which I now know to be wrong)

Nov 22 - Take comprehensive STD test (I know now it was too soon), all negative except for chlamydia

Nov 24 - Red spots disappear just as quickly as they came, however skin on penis feels red and raw and anywhere that my skin touches itself seems to really get irritated... rim of penis hurts pretty bad and it seems like it's a little puffy one minute, then fine the next... sometimes a red spot will appear and an hour later it will be gone..  When I pull my foreskin back there's a prominent red line where it stopped... lymph nodes in groin seem tender and have slight diarrhea every morning.

Dec 12 - See urologist to point this out to him... he says he doesn't see anything, but gives me cortizone cream and nystatin in one, tells me to see dermotologist

Dec 18 - See dermatologist, he doesn't see anything either, unfortunately it seems to have good and bad days, but gives me a better cortizone cream

Jan 5 - Do comprehensive STD test again, all negative this time...

Jan 12 - See primary doctor and tell him symptoms, of course, this is another good day for it and he doesn't see anything... gives me a one-time pill for yeast infection and some nystatin powder, which has seemed to help, but not totally...

Jan 15 - Still have what seems like slight irritation "inside" the penis... red spots will come and go, I'll see them one minute and they'll be gone the next time I go use the restroom... still a prominent red line when pull the foreskin back, seems to turn red as soon as air hits it...

So my question... I know now the herpeselect test at 6 weeks only catch 77% of the cases...  3 months is the better test as that will get 93% of the cases, but that's 3 months from symptoms and not exposure from the study I read?...  I've read a lot of posts that said my later symptoms don't sound like herpes, but then I read about a lot about asymptomatic cases, which really seems what I have.  Could herpes continue to cause irritation over 2 months later?  The early red bumps are what worry me...

I've read about trichomonasis and everything else since this fiasco, no tests seem to be for that though...  Just wondering, if it's not herpes, why is it so sensitive still?  It feels super raw, like someone is taking an emery board to the underside of my penis head.

[gracefromHHP]

not sure of your age but most of us have ebv by the time we hit 40.  

[larry123456]

Was supposed to say "high Epstein-Barr antibodies in the past."

[Zazarussel]

Larry, I know this is multiple years later, but I have to give you a standing ovation for all that research you did and for continuing to stick to your guns.  Reading through all your posts, I imagined how much research you had to have done to learn about herpes to such an extent. Must have been a ton.

[larry123456]

Thanks for all of your help Grace.  I know IgG only tests for the g surface protein, but the Western Blot is supposed to look for more right?

I've had Epstein-Barr antibodies in the past.  Since HSV1 and HHV-4 share some similiar surface proteins I really wonder if my body is just fighting it with those antibodies.  If I had ready access to blood testing I'd check HHV-4 antibody levels.

Not that it really matters at this point.  I just want to help others in the same boat and I'm definitely one of the people who doesn't test positive by blood.

[gracefromHHP]

glad you are getting answers. I don't think  hsv1 is the cause of all your symptoms but you know you have it now.

herpes igm testing wouldn't have helped you at all. A + igm for herpes still wouldn't have accurately told you squat.   we don't know exactly why not everyone tests accurately for hsv1 on the blood tests but part of it is probably because we only look at a small part of the igg response to infection with herpes and even though the vast majority of people have that section of response when infection, not everyone will.  

feel free to pay to post to Terri Warren at this point if you have further questions. this is all more up her alley than mine.

[larry123456]

Hi Grace, first let me say I did not want to prove you wrong, believe me, I wanted you to be right.

Posting an end to my crappy quest here and the results may not be all that exciting to people searching that are in the same boat as I was. I don't want to promote fear-mongering, but I've also been in limbo hell for a year and if anyone else can learn from this I hope they can.

I cultured HSV1+ last week, got the results today. It was my first "classic" outbreak and it was at 11.5 months after exposure. I had no prodrome, no warning, and it didn't even hurt. I had an "atypical" outbreak 18 days after exposure that was preceded with warning, I was told by numerous experts it wasn't herpes, it hurt like hell.

The doc took an IgG blood test with the culture last week. It was negative again of course. Index value of 0.4 for HSV1. This marks the 13th IgG test I've had, all negative. Highest index value was 0.49 in all of the tests.

I also had a negative Western Blot at 4 months. I really wish I had taken the "unreliable" IgM test as I think other herpes antibodies (e.g. Epstein-Barr and VZV) probably hold some answers to my negative tests.

This "classic" outbreak was very self-limiting and I can see why those who have had it for some time dismiss the initial symptoms of infection. I've had "weirdness" for the last year that just wasn't quite right. When the doc gave me antivirals for the first time ever last week, those symptoms resolved as well. I felt normal for the first time ever. I've never felt tingling, I've never felt electric shocks.

I don't want to promote fear, but you know your bodies, you know when something isn't right. The blood tests, even the Gold Standard Western Blot, don't appear to be very accurate at all for HSV1. You need to take a look at all of your symptoms put together and see where they lead you. The more scientific research I read, the more I knew it was probably HSV1, but I only had my slightly elevated index values to go by.

I thought I would feel better once I knew for sure, I really don't, this sucks. I was in limbo for a year and now I have to go in to coping mode. I guess I can be glad it's not HSV2, but it's not much consolation.

I wish I could go back and edit my paid consultations with Dr. HHH and Terri Warren for those people out there in limbo land, just searching for answers like I was. All they see is "stop obssessing", "you don't have it", "the tests are accurate", "genital-genital acquisition of HSV1 is very rare".

Grace, I thank you for sticking with me through all of this and still replying even when I seemed a little frustrated.

[gracefromHHP]

it takes at least 3 days for herpes antivirals to start making any difference.

at this point wait for results and go from there.

[larry123456]

Hi Grace, how long does Valtrex take to work in a recurring situation?

The doc gave me some the day I went in.  1 gram tablets.  I took one at 10am and another at 4pm, by that evening the tiny little blisters had just dissolved to red raised areas.

Each morning when I wake up I take one tablet.  A couple areas are red and puffy and within an hour of the Valtrex they seem to settle down, that seems too fast?

5 days in and most of the areas that didn't look good are cleared up, there is still one spot the size of dime that is a raised red area where the little blisters were.  Before I took the Valtrex it seems every thing this area touched was getting red and irritated.  

[larry123456]

Thanks Grace, are you saying recurrent outbreaks are not usually more than one blister?  This is definitely more than one, more like 8 altogether in one area.  A couple look like they've merged in to each other.

[larry123456]

Thanks grace, I called the provider back and they said they did do types for cultures, so he must have misunderstood me.

It's very weird, it started as two red bumps, one had fluid in it.  Those started to fade and then the 4 tiny blisters in a row appeared.  After taking the antivirals they've faded in to a red raised rash.

I remain hopeful, but it seems a little too much of a coincidence.

The other odd thing is that I've never had "prodrome", they simply appeared.    If this is herpes I have no idea what the tigger was and no warning that they were going to appear.

[gracefromHHP]

it would be unusual to have multiple lesions for a recurrence.  

also any provider not ordering typing of cultures really needs to update their herpes testing knowledge to be in compliance with CDC guidelines.

[larry123456]

To update my ridiculous saga:

Had a little itching last night and noticed a couple of red bumps starting. By this morning the itching had stopped, but there are about 4-5 red spots in one initial place I had them a year ago. They look nothing like the initial bumps except they are the same size, nor the rugburn spot I had at 6 months. These look a little more "classic" and 4 are in a line with each other, no blisters however and I don't even feel them.

Got in to a new doc, told him nothing about history, he took one look and said, "I don't want to alarm you, but I want to swab that for herpes." He also did a blood test, which will more than likely be worthless since I've been negative up to 9 months out when I quit testing.

Just swabbing bumps isn't going to do anything is it? I thought the bump had to be open? They've never opened up for me. The doc said the swab may pick it up if it's present on the skin.

I know visual diagnosis can be wrong, but I'd have to be in serious denial to be hopeful at this point. Partner with confirmed herpes, terrible genital pain, red bumps, lymph node pain, and all that, no recurring.

I asked him if a culture says type, he said it wouldn't, I hope it does as blood is not going to show it. My last blood at 9 months was HSV1 - 0.49, HSV2 - 0.08.

He also gave me antivirals, which will be the first time I've tried using them since this started. I almost don't know if I should. Maybe I should let these go to see what they turn in to?

[larry123456]

Hi Grace,

That's fair I guess.  I've just seen quite a few "swab positive, blood negative years later" posts concerning HSV1.  I have weird symptoms that have no explanation yet (including clustered red bumps), and after being with a partner who was positive.  I'm having a hard time believing blood test accuracy.

[gracefromHHP]

out of all the advice here, you chose to believe a post written by someone who you know nothing about and obsess over it?

[larry123456]

HI Grace, forgive me for being back here.

Just for "fun", I did another HerpeSelect at 7 months post-symptoms. It was negative, no index values were provided.

Each day leaves me a little more convinced that maybe it's not that, although what a weird set of symptoms. This post from medhelp has me not excited.

http://www.medhelp.org/posts/Herpes/Serology-testing-for-herpes-is-not-accurate/show/1635905

For the sake of posterity, here were my symptoms again.

* 3 sets of 3 clustered red bumps with a tiny dark center and culture positive partner.

* terrible generalized groin skin pain

* sore right testicle

* itchy pubic area

* a burning rash on the head of my penis

* a feeling like someone was taking sandpaper to the side of my penis

* muscle pain on the inner thighs

* groin lymph node pain

* crazy sore lower back

* feeling of fullness in my abdomen

* numb toes on the right

* a feeling of sunburn on the back of my calves

* a small red area that appeared 6 months later where the sandpaper feeling was, when it faded over 2-3 days, so did my genital pain

Anytime I put them all in to a search engine, guess what comes up? I didn't take any antivirals ever.  Is it worth pursuing someone to do PCR swabbing?

[gracefromHHP]

nothing about this sounds like herpes or shingles. really, stop obsessing over herpes, accept your negative results and follow up regularly with an urologist as needed.

no, you won't clear the virus on your own and be left with phn either.  

[larry123456]

Far from being a scientist, I Googled for an answer to my last question and found this:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC254073/pdf/jvirol00095-0189.pdf

This was done in rabbits, but is interesting:

"Antisera to CMV and EBV neutralized the infectivity of both HSV-1 and HSV-2 at high concentrations. This suggests that cross-reactivity between these four human herpesviruses may have pathogenic as well as evolutionary significance."

The significance here is that I've had high EBV levels in the past and it's plagued me from time to time.  When I first saw the urologist he said it sounded more like shingles (zoster) than anything else, which is too coincidental after recent confirmed exposure.

After seeing that study I'm really starting to wonder if I was exposed on an aysmptomatic shedding day and a herpes zoster immune response in my body kicked in, removed the virus, but left me with the post herpetic neuropathy consistent with shingles.  I see the exact same symptoms in so many exposed to herpes posts and most test negative, I have to draw some correlation.

[larry123456]

Wow Grace, as you suggested, the 13 weeks post exposure and 10.5 weeks post little red bumps, test came back negative (<0.91).

I'm ecstatic and relieved, but I still can't totally feel secure about it being at 18 days post exposure I had 3 patches of red irritated skin with multiple red bumps with a tiny center in them, which just went away on their own after about 2 weeks.  11 days post exposure I started getting raw, itchy skin.

I did have chlamydia at the time and took antibiotics for it, but I've seen nowhere that chlamydia makes little red bumps unless it progresses to Reiter's syndrome.  I see the Trichomoniasis makes "strawberries" on the cervix, which is almost what the spots looked like.  

A week and a half ago I was convinced Trichomoniasis was the culprit since I had irritation "inside" the penis as well as the outer irritated skin.  I convinced someone to give me 2g of metradinazole.  That helped the symptoms a bit, but they're still hanging around.  The head of my penis feels terribly raw and I see that consistently in posts for guys exposed to herpes, most never test positive.

So now I'm left to think I really am negative or I'm part of the 7% that isn't caught by the 3 mont period.

One thing I've been wondering, and you may konw this better as you are well versed.  Have there been any studies with HSV 1 an 2 cross-reaction to herpes zoster or Epstein Barr?  Could it be that many people are exposed to herpes 1 or 2, but their antibodies to Zoster or Epstein Barr are enough to effectively kill the virus off, but leave lingering effects such as Post Herpetic Neuopathy?

[larry123456]

That's what I'm hoping, if it weren't for the little red bumps, the partner with confirmed herpes and the flocounizole not really doing anything for the continued blotchy rash I would be inclined to believe it was just fungal.

I have a rocking immune system, so I wonder if that had anything to do with it.  I never had flu-like symptoms besides that morning diarrhea for a bit.  Is it possible I was exposed, the virus took hold, and my immune system forced it to retreat up the nerves before I felt sick, and because the response was so quick it just never made antibodies?  Or maybe that the virus presented and was severely beaten, but lingered around anyway, preventing my body from ever taking a break and developing gG antibodies?

Regardless, I'm going to go test again today and hope you're right.  Today is 13 weeks post exposure, but only 10.5 weeks post onset of symptoms (red bumps, irritation was a week earlier), that differentiation seems important.

My last test was 7 weeks post onset of symptoms and 9 weeks post exposure.

[gracefromHHP]

this doesn't sound at all like herpes. no reason to obsess over it.  odds are since you tested negative for herpes you would've had a pretty classic ob and you didn't so really no reason to repeat it.

[larry123456]

Shouldn't I at least test out to 3 months?  I thought that was the standard for highly probable confirmation?  I saw one study with a median of 21 days, but up to 300 something with still no positive blood test after a positive culture.

[gracefromHHP]

odds are this is a fungal infection.

[larry123456]

Thanks Grace...

I did have those bright red spots 15 days out that hung around for a week or so and seemed to itch like crazy... the same area is still raw 2 months later...  What about everything I've read about symptomatic people and 80% of the people not even knowing they have it?

[gracefromHHP]

really no reason to keep testing for herpes.  the risk of contracting it from a one time encounter is very low and none of your symptoms sound due to herpes. If you were negative for herpes and contracted it genitally, odds are you'd have had a very obvious and painful herpes initial ob which you haven't had.

your symptoms are here and there and providers can't really even see them. odds are this is all irritation or a fungal infection which you are currently treating.  don't get caught up on that this has to be herpes since your partner had herpes.

grace

[larry123456]

One last question, when ordering a Western Blot test, do they give all band information?  One study I saw mentioned Western Blot limited band testing, in addition to Herpeselect testing, catching 100% of the cases at 3 months post-symptoms.  For piece of mind, if herpeselect is negative again on Feb 11 I want to do a Western Blot, but only if I get the limited band results.