A long emotionally exhausting story.. Anyone relate?

[Lm88317]

My story begins over a year ago. I had come down with the Flu, so i went to my Dr who decided to draw my blood and for whatever reason run an STD panel. When the results came back he told me I tested Positive for HSV2 with an IGg level of 2.3. I had never had an outbreak nor showed any signs of itching, etc. To say i was in shock, disbelief and devastated was an understatement. A million things flowed through my mind.. How? Who? When? Now what? Amongst the constant sick to my stomach feeling especially because I now had to tell my partner who I was with for about a year at that point that I tested positive. 

 

To make a long story short my partner was tested and tested Negative for the virus. I was somewhat relieved, at least i hadn’t passed it on to him somehow, i thought. A friend of mine worked at a gay friendly clinic who were able to Use a Western blot just to be sure whether I was positive or not. Since i had been told the results from that test were far more accurate. In my mind This was my last hope. I went, had blood drawn and when the results came in it showed I was Negative for HSV2. After reading about so many False positive stories online i felt a sense of relief. All the emotions that were weighing down on me suddenly vanished and my life went back to “normal”. 

Flash forward a year later. I wind up back at my Drs office for an incident with my carpal tunnel(30 years old and already have carpal, thanks iPhone, woohoo). I explained to the Dr what had transpired after seeing him last year with the HSV2 and he seemed surprised. He suggested I redraw blood work just to be sure. When the results came in they showed AGAIN positive 2.3 iGg. The same exact Igg number as the last time he tested me. Re-Enter all the emotions and fear of telling and putting my partner through all this again... My Drs words to me were, “I’m not versed in these kinds of things so there’s not much I can tell you other than what the result shows. Here’s a referral to the Infectious Disease Center.” Comforting, thanks Doc. 

Distraught again I now phone a friend and re take the “western blot” where last year I had tested Negative. Results come in showing 2.3 positive. The nurse tells me, “Have you ever had an outbreak?” No. “So why are you stressing yourself out for? Nothing to worry about. Most people don’t even know they have the virus and if you haven’t had any outbreaks I wouldn’t worry.” More comforting news. She offered me Valtrex but i’ve yet to go down that road. 

Through endless Google searches I came across The University of Washington, who specializes in Herpes. They offer a Western blot test and a phone number to speak with educated individuals who know the much about the virus. I call, explain my story and am told much more relieving information, that if the test my friends clinic gave me was a “western blot” that it wouldn’t have a # value(2.3) rather, state positive or negative. So, now you’re telling me there’s a chance I don’t have the virus afterall? The individual I spoke with stated here’s a 50/50 chance that I don’t have the virus, that when these blood tests are being done It’s searching for a protein related to HSV2 and just might be confusing it with another, similar protein, which is then causing me to test positive for the virus. So essentially I’m trapped in limbo, or so it feels that way, until I can get enough extra cash to do the test from the University of Washington. 

The last 2 months have been mentally and emotionally exhausting... My partner is awaiting his results which should be in tomorrow. Hopefully his results are negative, again, as he has also never had any outbreaks and tested negative last year). All I want to know is if I have the virus or I don’t... Any itch or feeling now after  endless googling sends me spiraling into a frenzy.. 

Has anyone else experienced something like this? False positives? False negatives? 

[LotusBud]

Hi @Lm88317

Ran across a post on the forums by @beckham He knows he's been exposed and has nerve pain symptoms, but tests keep coming back negative. Maybe both of you should check out the Univ of Washington. Here's his post.

Good luck to both of you!!!

 

 

[beckham]

@Lm88317

I'm sorry to hear you're getting such a run around, but I've found that to be typical if you don't present "normal" hsv2 symptoms.  The medical field, even the so called experts, are far behind on this.  You've probably read some posts from Terri Warren's Westover Heights forum.....and she has been downright insistent that what I'm experiencing (major neurological issues in my legs, among other areas) is no way related to hsv2.  It is related.  I've been finding all the herpes viruses (EVB, shingles, etc) can present themselves in a similar manner.  

A little about me so you know I'm of sound mind.  I'm 44yo, multiple degrees, extremely fit and in tune with my body, former professional athlete.  For the past few years I've been really honed in on fine tuning my body; regular blood tests to make sure every part of my body was operating at full capacity (liver, thyroid, etc, etc).  I've never in my life had any sort of chronic issue with my body and I'm hardly every sick.  But since my exposure to hsv2 9 weeks ago, I've had severe nerve issues where it looks like my skin is crawling, headaches, neck pain, throat pain, ear aches and joint aches.  No blisters, no itching, no sores and no positive test on igg.  I'm waiting to take the Western Blot.  I believe the WB checks for 14 different proteins so you should have received something back much more complex than just a simple hsv2 value.  

From what I'm putting together, there is some sort of strain of this virus that is not commonly known to the medical industry and does not show up on tests in a uniform manner.  I've read some of them test positive and others don't.  I've also read where some partners contract it and some don't.  It's mysterious to say the least and frustrating for those of us in limbo.  At this point I don't even know what to tell potential partners because it's such a complex story at this point.  All I know is that I'm going to proceed as if I'm contagious and take suppressants and inform future partners of my situation.

Please keep us updated.  So many on these forums fade away and leave their stories untold.  I'll do the same on my end.

Best of luck.

[beckham]

….furthermore, what the nurse told you is careless and reckless.  Jeez.

[beBravebeBOLD]

Hey Beckham 

i just wanted to chime in and ageee 1000% that hsv is definitely connected to neurological issues! The medical community lacks soo much information and they are spewing out rudimentary bs that has gone by the way side because herpes has evolved! I think it’s very simple to see that every other virus in the hsv family (zosters, Epstein Barr, CMV) causes serious neurological issues but hsv doesn’t?? It makes no sense and is horrible that medical ppl can’t think pass web md! I’ve had H for 16byears and have heard countless stories from vets with serious nerve issues and pains that have been constantly reported but never addressed properly because people with H are left to find our own answers. 

[Lm88317]

Beckham, Lotusbud, 

Thank you for the responses and apologies for my late response. I’ve had my head wrapped around the usual symptoms (itching, burning, outbreak) as you said, that I didn’t even see or hear about it severely effecting and causing neorological issues. Before the HSV2 situation I had been told I had slight carpal tunnel in both my hands as i started experiencing painand been experiencing circulatory issues. My friends all joked and said, “Welcome to your 30s”. But now you have me wondering if any of t is related to this. Back to Google I go lol.

My partners results came in and he tested negative. Now, is it possible that in a years time since this whole situation originally started, we’ve had unprotected sex and if I was positive that he would at this point be too? Very confusing. I’m going to do the Blot with a Washington University on my next day off and hope it provides me with some clarity and relief. 

I will definitely keep you posted on this emotional roller coaster. 

[Ishmael]

1 hour ago, Lm88317 said:

Beckham, Lotusbud, 

Thank you for the responses and apologies for my late response. I’ve had my head wrapped around the usual symptoms (itching, burning, outbreak) as you said, that I didn’t even see or hear about it severely effecting and causing neorological issues. Before the HSV2 situation I had been told I had slight carpal tunnel in both my hands as i started experiencing painand been experiencing circulatory issues. My friends all joked and said, “Welcome to your 30s”. But now you have me wondering if any of t is related to this. Back to Google I go lol.

My partners results came in and he tested negative. Now, is it possible that in a years time since this whole situation originally started, we’ve had unprotected sex and if I was positive that he would at this point be too? Very confusing. I’m going to do the Blot with a Washington University on my next day off and hope it provides me with some clarity and relief. 

I will definitely keep you posted on this emotional roller coaster. 

It is possible to be in a monogamous relationship for many years with someone and not transmit. In fact, if you avoid having sex during outbreaks (or don't experience outbreaks) your chance of transmitting to a man over an entire year of a sexual relationship is just 5%. 

[beckham]

@Lm88317

Please do keep us posted on the WB.

[UnluckyMan]

That carpal tunnel you speak of may well be herpes, Lm88317.  Just to give you my story,  I was exposed to HSV in July, and never before that in my entire life did I ever feel random burning sensations throughout my body like I feel now.  I have burning sensations that come and go in my feet and toes, and shooting pains down my legs as well as in my fingers.  The palm of my right hand (mostly the area between my pinky and wrist) sometimes will just randomly heat up and start burning for a few seconds.  One morning I even woke up and my entire right leg felt like it was burning for about 5 seconds as I lay in bed and then it just stopped.  I tested negative for HSV by IgG blood test at 6 weeks post exposure, so I'm going to have to wait another long 6 weeks before I test again, but I'm almost positive it's herpes that's causing this.

The sad part of all this is that I was only inside of her vagina for about 5 seconds before the condom ripped and exposed my entire penis.  My penis has been constantly burning at the tip ever since July 16th, with a few days in between where it stops.  The only thing close to a blister I've ever had is a bump in my pubic hair area that swelled up about 4 days after exposure.  Doctor wrote it off as an ingrown hair, but the hard bump is still there over a month later.  It doesn't look like typical herpes blisters, and it may not be related, but it hasn't gone away.

I have random lower back pain as well and my bowel movements are not the same.  I was constipated for weeks at one point.  Never was constipated before this in my life.  Diet hasn't changed.  All of these symptoms relate to herpes, but doctors don't seem to think so. 

I read about so many people sharing my symptoms online who have herpes or have been exposed to it and don't know if they have it like me, and it just makes me depressed.  The medical community seems to write this off as just some skin condition, and that if you don't have lesions then there's nothing to worry about, but I believe it's something much worse.  And I do not want to ever give this to someone else if I do have it.