Weird Herpes Symptoms

[herpes454]

Quick background: 

Male, married and with the same woman for 20 years.  Up until 7/23 she was the only woman I was ever intimate with (both virgins dating since HS).  Well my (former) best friend (a female) and I became a little too close on 7/23.  No sex, but there was vaginal contact.  Lasted about 2 minutes before I regained sanity and stopped myself.  Immediately told wife, she handled it quite well actually (better than me) and our relationship is very strong at this point.  I don't think I'll ever forgive myself and I still get sick to my stomach thinking about it 4mo later.  But that's outside the scope of this post... 

In September (~6wks after contact), I noticed some numbness feeling around my jawline and lips.  It felt like I always had chapped lips or someone put icy hot on me.  Then a week or two later I noticed the same thing in my groin...and then on my chest...and back...and arms...and legs.  Basically everywhere I felt like I was covered in icy hot or had a mild sunburn.  Eventually figured out that it was very much like prodromal HSV symptoms.  Naturally I freaked out and got tested.  I'll never know if the girl I was with had HSV, as you can imagine I had to swear off that friendship immediately and cease all contact and we haven't communicated since.

Igg test came back positive (barely - 1.9) for HSV2.  HSV1 was high but not positive.  So anyway, it's now been almost 5mo since this encounter and I've never actually had an outbreak that I know of, but I almost constantly have these prodromal numbness/sunburn symptoms.  I went on Valtrex about a month ago and the oral tingling and numbness is completely gone, but I still get it in the groin region and on my abdomen to some level almost continuously.  It's really bad around my pant waistline.  I also think it's causing some urethritis. But again, never any confirmed outbreak.

Does anybody else get anything like this?  It's nothing like anything I've read about HSV...I was expecting the dreaded outbreak any day following the prodromal stuff...but it's never come.  I guess maybe that's a good thing, but the fact that it's continual kinda drives me crazy.  It's a constant reminder of how stupid I was for those couple minutes.  My wife seems less concerned about it than I am, of course I'm scared to death of giving it to her especially given the circumstances upon which I acquired it.  I've insisted on condoms since the incident but she wants to stop using them, she understands the risks.

It's also weird because before the Valtrex the feeling was around my entire body.  I never had any oral contact with her so I don't know how it would have infected that nerve cluster, and I've never read about anybody getting prodromal symptoms in their hands, for example. 

In any case...any insight would be appreciated.

 

 

 

 

 

 

 

[WilsoInAus]

You need to believe that you were not infected with herpes from the incident you describe. Without penetration there is no practical chance of infection. Herpes symptoms are located in the infected region and do not travel the body.

Is there any reason to suspect this friend even has HSV-2?

Most of what you describe seems stress related to me.

I would consider testing again to confirm a negative for HSV-2.

[Guy12]

454 contrary to what others may say here I do personally believe these others symptoms can come from H.  I've had systemic symptoms since I was infected. I have constant irritation at the site of infection that never subsides unless I'm laying down, take high dose monolaurin w/lysine or B12.  This thing has taken my health down considerably both physically and mentally 

Dont let folks try to convince you its psychosomatic.  Look at context. The "experts" in my humble opinion know a lot less about H and its effects than they think they do.  In fact anyone who says "H can't or H doesn't" is ignorant  

Google constant prodrome, PHN + herpes, pain + herpes, etc and you'd be amazed at how common "weird" symptoms are with this thing.  

I am not saying you have H  btw just my two cents.   

 

[herpes454]

There may not have been *actual* penetration, but trust me there was enough contact for transmission. 

As for the symptoms around the rest of the body...that I can't explain.  Having gone through most of the grieving process several months ago, the stress levels really aren't that high any more.  Shame yes, but not stress.  And the symptoms didn't even show up until almost 6wks later when things were much better (ugh that first two weeks was worse than death).

I go to the doctor again next week, maybe I'll demand a WB test or another Igg just to see what they show now.  I also just looked again and my HSV2 was a 1.3, not a 1.9.  But that was only about 6wk after contact.

Yes this girl was basically supermodel attractive....and had no shortage of men....many of who's exploits she used to tell me about quite regularly.  So she had no shortage of partners. 

 

 

 

 

 

 

 

[elnino]

@herpes454:

Your story is almost identical to mine. I'm sorry to say that I think it is likely that you have HSV-2. Here's why:

I also acquired this 9 years ago by non-penetration, but very strong vaginal contact. Plenty enough to transmit. I had a classic outbreak, and had it confirmed by blood test. I forget which, but I scored quite high (6.5).

After about 3 months, I began to have the exact same sensations you are describing. They start in my feet, and gradually progress upward, sometimes reaching all the way to the top of my head. They are not constant, but happen many times throughout the day. They can reach my hands, face, anywhere really. 

These sensations are usually accompanied by others as well: aching ankles, shins, thigh muscles. Often times, tingling is present. The good thing is that they do stop, but it takes a while. They sometimes occurred without an outbreak, too. Totally unpredictable. I hadn't had them for about 8 years until about 6 weeks ago, when they started again in conjunction with my first outbreak in over 5 years, and lasted for about a week. They stopped, but I'm still dealing with constant, but changing, nervous system issues. They are very slowly going away, but it is frustratingly slow progress. I find no response to any anti-virals. I've tried generics of all 3. I want to try Valtrex, but my insurance won't pay for brand name drugs and the going price is outrageous. The generic I was given is by Mylan, which is known to be ineffective (just google "mylan valacyclovir effective"). I'm trying to get some from Canada for cheaper.

Are you taking the brand name or generic Valtrex?

 

 

[WilsoInAus]

@herpes454 the truth is out there, I encourage you to find it. It is your truth, it is not relevant what people here say about their conditions or even what you read of others. Take control of your own truth.

[herpes454]

33 minutes ago, elnino said:

• @elnino:

Sounds similar to me except that I haven't had an outbreak.   Hope I never do.  For me the most irritating part is the urethritis.  Inflammation and occasional discharge/discomfort.  It comes and goes but is there several days as week. Heck I even get the feeling in my eyeballs from time to time...talk about surreal.  I'm hoping the genital portion of it dies down like the oral portion seems to have.  I'm actually on valacyclovir.  Definitely an improvement but obviously didn't make it go away completely.  Maybe I can up my dosage and see if that helps.   

 

[herpes454]

35 minutes ago, WilsoInAus said:

@herpes454 the truth is out there, I encourage you to find it. It is your truth, it is not relevant what people here say about their conditions or even what you read of others. Take control of your own truth.

So far my truth is that I've had a positive HSV2 test and definitely have prodromal symptoms of some sort, and urethritis.  Not sure what more I can do about my truth.  Will get retested for sure but I'm pretty sure I know what the answer is going to be.    It's just frustrating because my GP was more useless than WebMD and my urologist wasn't much help either.  I'm going to an infectious disease doctor now but he doesn't seem to be taking it all that seriously either.  Self learning has outclassed all of my doctors so far.  I'm a well educated engineer and frankly have been much less than impressed with the doctors that I've seen.  I've actually been telling them what tests they need to be performing.  It's kinda scary actually.

[WilsoInAus]

And stop being ridiculous about outbreaks. They are caused by many things: staph, fungus, molluscum, scabies, eczema, zoster, hpv, 

i think people deserve to be cared about sufficiently to receive a proper diagnosis. Do you?

[WilsoInAus]

You have a reading of 1.3 that is only positive on the test label, it isn't a confirmed positive at all. Please get the westernblot or IgG test to confirm. 

[herpes454]

6 minutes ago, WilsoInAus said:

You have a reading of 1.3 that is only positive on the test label, it isn't a confirmed positive at all. Please get the westernblot or IgG test to confirm. 

It was an IgG test though.  I'll get another now that it's been 4mo and see if it's increased, but the result was positive according to the test. Is there something else I have to look at on the results?  There really wasn't much to it.

Edited December 10, 2015 by herpes454

[WilsoInAus]

The trouble with IgG testing is that although they involve an antigen designed to attract only in this case HSV-2 antibodies, in quite a lot of tests other proteins in your blood stick and cause a low positive.

Most people with the virus test well over 8!

people with HSV-1 also regularly test over 1.1 on HSV-2.

[herpes454]

23 minutes ago, WilsoInAus said:

The trouble with IgG testing is that although they involve an antigen designed to attract only in this case HSV-2 antibodies, in quite a lot of tests other proteins in your blood stick and cause a low positive.

Most people with the virus test well over 8!

people with HSV-1 also regularly test over 1.1 on HSV-2.

So western blott it is then?

[WilsoInAus]

Do you have HSV-1? If you do, proceed directly to Westernblot.

I think it is worth proceeding to Westernblot at some stage regardless, but it does incur an expense. You need to wait until 16 weeks after exposure for this test.

It might be best to have an IgG at 12 weeks. If negative then there is no need to proceed further. If firmly positive ditto. If low positive then you can proceed to Westernblot 4 weeks after.

[herpes454]

My HSV-1 at 6 weeks was like 0.9 IgG if I remember. In any case, it's been 16 weeks so I'll try for the WB.  I've read that some labs are a pain about getting it done.  If that's the case locally then I'll just get another IgG and see what that says.

That said, there's really no doubt in my mind that this is where all this came from.  It's not like I'm some hypochondriac and it would be one hell of a coincidence if something else were causing all these issues. and it just happened to start up after this encounter

 

I remember in the beginning readout about how the prodromal symptoms usually occur at the site where the breakout is about to occur and thinking to myself....my God if that's the case then my whole body is going to be one giant breakout and even shaking someone's hand is going to be enough to give them HSV!  Good times...

Edited December 10, 2015 by herpes454

[Guy12]

10 hours ago, herpes454 said:

So far my truth is that I've had a positive HSV2 test and definitely have prodromal symptoms of some sort, and urethritis.  Not sure what more I can do about my truth.  Will get retested for sure but I'm pretty sure I know what the answer is going to be.    It's just frustrating because my GP was more useless than WebMD and my urologist wasn't much help either.  I'm going to an infectious disease doctor now but he doesn't seem to be taking it all that seriously either.  Self learning has outclassed all of my doctors so far.  I'm a well educated engineer and frankly have been much less than impressed with the doctors that I've seen.  I've actually been telling them what tests they need to be performing.  It's kinda scary actually.

Sounds like what I went through. Context is everything. H is poorly understood by the majority. Nothing with this disease is "textbook".

Your next step seems a great approach 454.  

 Keep us posted 

Edited December 10, 2015 by Guy12

[WilsoInAus]

The virus is mostly textbook for maybe 95% of people. Exceptions do exist and this no different to any other virus or disease because everyone's physiology is different, the virus is more constant.

Millions of men a year get the same symptoms. The vast majority are stress related. Unless you've experienced what true stress can do to your body it is difficult to fathom. The mind is the most compex and erratic organism of all, so much more so than herpes! If you want some proof, read some stories of men with prostadynia. Over 2/3s of these cases are probably related to stress.

Many on here have had the same symptoms. My own symptoms are similar to many on here including @Guy12. Over the course of about 6 months, I had: burning penis, intense itching in genital area, redness near urethra, irritation inside urethra, sunburn feeling down legs, sore testicles, red scrotum, 'purple' butt (intense itching and anal area goes purple), clammy greyish penis, fordyce spot eruptions, difficult peeing, nerve pain, tingles and stings throughout body.

And guess what! Myself, @Guy12 and many others with these symptoms do NOT have genital herpes.

[herpes454]

2 hours ago, WilsoInAus said:

The virus is mostly textbook for maybe 95% of people. Exceptions do exist and this no different to any other virus or disease because everyone's physiology is different, the virus is more constant.

Millions of men a year get the same symptoms. The vast majority are stress related. Unless you've experienced what true stress can do to your body it is difficult to fathom. The mind is the most compex and erratic organism of all, so much more so than herpes! If you want some proof, read some stories of men with prostadynia. Over 2/3s of these cases are probably related to stress.

Many on here have had the same symptoms. My own symptoms are similar to many on here including @Guy12. Over the course of about 6 months, I had: burning penis, intense itching in genital area, redness near urethra, irritation inside urethra, sunburn feeling down legs, sore testicles, red scrotum, 'purple' butt (intense itching and anal area goes purple), clammy greyish penis, fordyce spot eruptions, difficult peeing, nerve pain, tingles and stings throughout body.

And guess what! Myself, @Guy12 and many others with these symptoms do NOT have genital herpes.

Mind if I ask:

1. What triggered your symptoms?  I've had almost everything you describe except purple butt (?), grey penis or any sort of eruption.

2. What finally convinced you that you didn't actually have herpes? And what do you think it was that you had/have?

It's just interesting because this whole thing started off almost immediately after our encounter with what I thought at the time was gonorrhea.  Inflammation, discharge from urethra starting the second day afterwards.  Had a whole bunch of urine cultures done but always negative, though no doctor has actually been able to tell me exactly *what* organism they test for in the urine culture (I have had a bunch of chlamydia and gonorrhea tests done and always negative.  Doctors were useless and wouldn't help since the tests came back negative...eventually it spread to my prostrate and for the past 3 months have had what I assume is bacterial prostatitis.  Urologist gave me antibiotics finally - doxy, Cipro, levo...but so far whenever I stop taking them it seems to come right back.  I'm almost done with 6wks of levofloxacin and it feels pretty good but I still have the urethra inflammation and occasional discharge.  I'm pretty sure as soon as I'm done it's going to flare up again but trying to stay positive.  That's why I was sort of starting to figure that the urethritis might be due to the HSV.

 

 

 

 

[WilsoInAus]

1. The trigger was stress. Mega stress from divorce, restructures at work, some souring family relations. I was then informed by my partner that she had a genital outbreak that was swabbed positive and was HSV-2.

That really put me over the edge. I cared for this person and I blamed myself for having been infected in my 'wild' phase after separation, although I'd never had a symptom. The symptoms started at the time she told me. I started looking every 10 minutes, seeing things I never had seen before and it goes on from there. I had previously also had a chlamydia infection for at least 3-6 months without knowing it and pretty likely got into my prostate. You start clenching the area too, stressing nerves and muscles (aka burning!)

2. It transpired that I had given my partner HSV-1 from my established oral infection. It was clear then that I never had genital herpes, HSV-2 or otherwise. I took charge of things a bit more in my life.

So what was it. Stress related prostadynia is the best description. My doctor called it imaginitis, letting my fears stress my body, weaken the immune system, stress the nerves and muscles in the area and exacerbate symptoms.

Your thinking isn't quite right. Even if you had herpes in your urethra, it would come and go quicker than treating a bacterial infection. The more prolonged, the less likely herpes is involved.

[someguysdo]

Wilson, I am only going by what I know of your story and have a question. You listed all these symptoms you had, and you also said you have oral hsv1. If your blood test indicates that you carry hsv1 antibodies how do you know it is confined to the oral region and isn't also in the genital region? I'm curious if you are basing this on the assumption that long standing oral hsv1 offers complete immunity to acquiring  hsv1 genitally.It offers some immunity, but not complete.

[WilsoInAus]

Correct, there is no known case of a male obtaining a genital HSV-1 infection with an established oral infection.

Next none of my partners (two) in  at least three years prior to my symptoms starting had HSV-1 (confirmed by testing).

Lastly, given my antibodies, HSV would not cause such symptoms genitally. I have never had a genital lesion, slit etc.

Hence I am very confident I do not have genital HSV.

[Guy12]

6 hours ago, someguysdo said:

Wilson, I am only going by what I know of your story and have a question. You listed all these symptoms you had, and you also said you have oral hsv1. If your blood test indicates that you carry hsv1 antibodies how do you know it is confined to the oral region and isn't also in the genital region? I'm curious if you are basing this on the assumption that long standing oral hsv1 offers complete immunity to acquiring  hsv1 genitally.It offers some immunity, but not complete.

Someguys. Found this page. Lots of good info. 

 

http://virology-online.com/viruses/HSV.htm

And I quote...

"the other possibility is that the lesion at the remote site is caused by another strain of the virus eg. persons already immune to HSV-1 are prone to reinfection by HSV-2 or ANOTHER STRAIN of HSV-1. 
 

I've met several people on here who've acquired hsv1 G after having it oral.  In that same article it gives three examples of hsv1 that are resistant to acyclovir (another common "expert" dogmatic "fact"...if it were H antivirals would stop the constant prodrome"....I was told this by 1 of these "experts")  

ask @oneday or @Sillybrain2 about acquiring this crap genitally after having it oral 

it does happen more often than the "experts" (who don't have H I'm assuming and just go off of "research" rather than listening to people's struggles who are +) would lead you to believe 

Wil if you are truly negative why do you maintain a constant presence on this site?  If I were for sure negative I'd say good luck to all and get on with my life not spending another minute worrying about H  (that's just me I guess). 

80%+ of H isn't classic so there doesn't have to be any lesion.  

I have a hard time dismissing those symptoms and mine as "prostydynia" (which I had checked PSA and rectally) or "imaginitis" similar to "vulvodynia" or "genitally focused anxiety" which to me are fancy terms for an HSV infection 

That for me is quite a "reach". My logic and medical training cannot accept such ridiculous concepts. Psychosomatic does occur but I am not one.  

I have Herpes, hsv1 genitally and the reason I'm not giving in is I have a wife to protect.  Giving her this wretched disease is something I don't take lightly  this thing is anything but a "mild skin condition"  It's a life sentence both physically and mentally.  It's a nervous system disease and neuralgia, constant symptoms, etc are very real.  

Cbc's normal  Std panels all negative 4x except 3 hsv1 equivocal tests   Constant genital symptoms 24/7. Never occured before my ORAL exposure. I am hsv1 and 2 negative before this  never had a cold sore in my life 

Blood testing for this stuff I've come to learn is bunk for many 

I cannot be ignorant to facts  everything including context, symptoms, neuropathy, timing, points to H.  Blood tests are crap and these sites are riddled with similar stories.  

If you physically see rain is coming down, the pavement is wet and you can hear it despite your weatherman continually telling you don't worry it's really sunny and clear out who or what do you believe??

 My answer: it's raining outside (I have H)

part of moving on is acceptance which I have done and am in the process of trying to sift through.  Constantly dismissing REAL symptoms and signs of H does no one any good

 

 

 

Edited December 15, 2015 by Guy12

[WilsoInAus]

I am not negative, I have oral HSV-1. Prostadynia is very real and its own affliction, competely independent, experienced by those with and without herpes alike. That's fact and probably what you have. There is no evidence that antibodies are not equally effective against all strains of HSV-1. In fact evidence suggests that they are, for example, there is no known case of a male becoming infected genitally with HSV-1 with an established oral infection.

You have no more evidence than me of a genital HSV-1 infection, it isn't fair to our readers to suggest otherwise and that prostadynia isn't a value diagnosis for you. You most probably have an oral HSV-1 infection if at all.

95% plus of herpes is classic, that's a fact.

Blood testing is quite accurate, especially for HSV-2.

Your analogy makes no sense. You can see rain, you cannot see herpes.

What you describe as herpes symptoms simply aren't. They aren't real at all or explainable by other causes.

You continue to dodge the issue of the hippocratic oath, I think we can only assume you haven't taken it and are hence not a primary carer with training to support your discussion points, that's a shame I though you may have something to add from that context.

 

[Constant Diplomat]

Doesn't a culture swab test trump all other tests?

[WilsoInAus]

Yes if you didn't have the type before, it does trump all tests in the positive.

Why do you raise this?