Leg/Butt Pain. Muscles Twitching> Herpes Related??

I'm a 26 yr old male that has never had any health issues or problems in my entire life beside the occasional cold/flu that everyone else gets. That all changed a little over 4 months ago.

Had brief unprotected oral sex from a girl i met the day before and about 40 secs of brief unprotected intercourse. The rest was protected sex. 6 days later while driving, I began experiencing short sharp random stinging pains in my groin mostly above the right testicle area but the pain didn't feel like it was from the testicles.More like deeper in the groin. Also, my perineum area felt swollen like I was sitting on something near my rectum. 1 day later i got a sore throat and my neck lymph nodes felt slightly swollen. 2 days after that, I noticed a raised bump on my penis shaft on the bottom right side. It looked like it maybe an ingrown hair cause it didn't hurt and it never turned to a blister but I have never seen a bump on my penis like that before. Also, when i would shower, I would feel a sting in one area on the rim of my penis head when the water from the shower head touched it but there was never any sign of redness, bumps, cuts, or abrasion whenever i checked it.This weird pain lasted in the penis head rim for almost 2wks. Went to get tested for all STDs/HIV and all tests came back Negative. I know 1 week is too soon for HSV and HIV test but both were negative so I had no previous exposure. Urine sample, clean. Girl also said she was clean on everything but i'm not convinced she had herpes testings. Doctor did turn and cough test on me and said I might have a hernia. Doctor looked at bump and thought, ingrown hair or irritation. Prescribed 10 days of Doxy as a precaution if I had any bacterial infections. The bump went away in about 3-1/2 days. Had a surgeon rule out hernia and thought pain was due to some type of strain.
Then got sick with cold-like symptoms that lasted almost 2 weeks. Very rare for me. Was treated for sinus infection. During this time, i developed the random burning pain up and down both legs and buttocks, sometimes in arms and back. Then the muscle twitchings started. mainly in legs when i would sit and relax. Every couple days or so I would notice very tiny tiny white head like pimples on my penis shaft that would last for like maybe a few hrs or so maybe 1 day tops. Never more than one at a time. They looked just like pimples you get on your arms or face but then again, I've never seen this on my penis before. Ever.
Got blood tested again for HSV and HIV at 6 wks. Tests came back Negative again. Showed doctor one of the tiny whitehead pimples and he said it wasn't herpes.
The random pain in my body, mainly in the legs, groin, penis, and buttocks have been on and off ever since. I seem to get a pain in my penis minutes after i urinate every now and then but never while urinating. Urologist said I may have prostatitis but all my urine samples have been clean for bacterial infections. The swelling in my perineum was gone by then but I still feel the random groin pains.

Still convinced that I had something wrong with me, I went and got tested again at 12wks. HSV 1 and 2 were again Negative. All herpes tests have been Herpes Select Type specific IgG. I began to believe that i didn't get herpes but then the pains would come back and change all of that. I then got another bump like the one i described in the very beginning near the base of the penis by the pubic hair region which again didn't hurt. Doctor saw it and said she was certain it wasn't herpes and was probably folliculitis/ clogged hair follicle. Bump completely went away in about 5 days.

It has now been almost 5 months past expose and i still don't feel normal. Some days i would have a day or two of little to no symptoms but then it would all come right back. I don't know what to think. This issue has been driving me crazy. If its not herpes, then what is it? The bumps i got don't point to herpes but all the nerve pain and constant non-stop muscle twitching mainly in my legs seems to say that it may be nerve damage from herpes. I have done tons of searching on the web and I have seen ppl saying they got leg twitchings from herpes but all the experts don't seem to think its related. I take all sorts of vitamins so, i can't have any deficiencies. And i had an xray of my back to rule out spinal abnormalities. My next step will be an MRI of the spine but I'm almost certain it will show up normal.

I try to live a normal as possible life so i won't get stressed over this but the symptoms won't let me move forward. Anybody experienced these issues but never tested positive for herpes or any type of virus? Sorry for the long post but i wanted to give everyone specifics of what I'm going through. I actually left out way more information but that's just how complicated these past 4-1/2 months have been for me. Any help is appreciated.

[gracefromHHP]

really no reason to think you have herpes. you tested negative repeatedly for it. if you didn't have either type of herpes prior to the oral sex and had contracted it, you would've most likely had very "classic" symptoms that would've been multiple lesions and painful at that.

continue to follow up with your providers for any symptoms are you are concerned about but really nothing you've mentioned sounds std related.

grace

[bamboozled86]

Thank u Grace for your prompt response.
And I value your opinion on the matter. I noticed that u answer a lot of posts on here.
I want to believe my results but I just can't justify the cause of the pain and occational zings and sting feelings in my penis. Again, never had a penis issue till after this encounter. Also, the nonstop muscle twitches in my legs. I am having these issues as I write this post right now. All info I see online suggests some sort of viral infection. Possibly herpes zoster but what if herpes simplex can do the same thing but I dont test positive till months or yrs later? I dont want to infect anybody if I do have it, thus making my love life extremely hard right now.

[gracefromHHP]

not likely it's herpes zoster either. your symptoms just don't match up at all with that either.  

[bamboozled86]

Grace, Do you think I need to at least test again to be certain its not hsv 1 or 2 related nerve problems? I heard 12 wks may not be enough for antibodies to build up and be detected by blood test. Or do you or anyone think that my results are conclusive enough. I just don't see what else could be the cause of these feelings of sharp pains and burnings in my penis and legs. Also, the constant muscles twitchings in my legs and groin area which has been going on for almost 4 months now. If I didn't have those bumps I had from early on, I would be more willing to accept the results but since herpes can look like anything, plus the fact that i've never had them before on my penis although they didnt hurt, I just cant shake the thought of it.  

[gracefromHHP]

see a neurologist at this point for further evaluation. no reason to think it's herpes.

[bamboozled86]

I am scheduled to get an MRI and see a neurologist in the next few days. I really hope this is nothing serious but for this to be going on for months, I think it is... but all the symptoms that point to herniated discs or some type of spine injury don't really fit my situation. I research spine/ nerve problems and i barely see muscle twitching in the convo. I research herpes and there's tons of people testifying that herpes caused their twitching and shortly after being infected with the virus. Plus this feeling of itchiness and burning after I urinate doesn't sound like back related problems. Numerous urine tests don't show bacteria so why am I having STD infection sypmtoms?? I just don't know where to turn.

[Sparkii]

Hello, It certainly seems like a strange coincidence that you started having all these problems after sleeping with that woman.  Nerve pain is very real when dealing with the herpes virus.  Pain associated with urinating also.   If you do have it, I have read the antibodies could take a year to show up. And some people who test positive on the sores will test negative in the blood.  I wonder if you could ask the Dr. To test a sore just to make sure. I've heard they can be mistaken for ingrown hairs.  Everybody is different and your immune system is putting up a fight for something.  Best of luck to you.

[jamesap2]

I am having like the same exact symptoms and I still have not tested positive for hsv 1 or 2, if you end up finding out what is wrong could you please let me know cause I literally have like the same problems and it doesnt make any sense

[bamboozled86]

Sparkii-

Thats exactly what I'm saying!! I know these aren't typical classic symptoms of herpes but I've researched that herpes can be the culprit of many things since its a virus. All things that I am currently experiencing. Which is why I'm so torn on what is going on. All the symptoms point to herpes but I wont test positive for it. And I'm clean for all other stds.

[bamboozled86]

Jamesap2-
How long have you been having these symptoms and have u been tested for anything? What were your results if you were and long after exposure did u test? I can't imagine dealing with this problem for the rest of my life.

[bamboozled86]

Jamesap2-

How long have you been having these symptoms and how many tests have you had? How long after exposure did you get tested? I'm just curious cause there's alot of us out there with the same story but dont get a diagnosis. I'll be damned if I continue to have these symptoms after being perfectly healthy and never get an answer.

[gracefromHHP]

don't get caught up into thinking it has to be herpes related.  most of the folks who have symptoms like this, never tested positive for herpes regardless of the testing. I know it's annoying to be seen frequently but it's the best way to figure out what is going on. A neurologist and an urologist can work together too.

[dads6778]

my husband is suffering with the same symptoms and I have been researching and found that about PUDENDAL NERVE NEURALGIA/ENTRAPMENT.

hope this helps good luck!

[jamesap2]

I have been having these symptoms for about 3 months having the big IGG test done soon, I have tested twice once at 1 month IGG was negative and another time at about 2 months IGM and was negative. I have talked to Grace as well as my primary doctor and a urologist and they all have told me not to worry it's not herpes. This whole thing has been super frustrating because my symptoms seem to suggest herpes in my mind because they have been somewhat similar and didn't start until after a sexual encounter but the more I talk to professonals the more they tell me how wrong I am so kind of going crazy over this. That's why I wanted to comment on this so if one of us can figure this out hopefully we can each find a solution.

[bamboozled86]

Pudendal Nerve Neuralgia/Entrapment huh?  Has your husband been treated for that yet? Is that a result of herpes or some other cause? Did your husband ever test positive for herpes? Thanks for your comment.

[bamboozled86]

I feel your pain man! This is the worst feeling in the world. From going from completely healthy to not knowing what the hell is wrong with you and the doctors not knowing whats wrong. I'm getting my MRI tomorrow morning but I fear everything's gonna come back negative and I will be spending a ton of money with no results. I can't have a decent relationship with someone cause I don't want to put them at risk if I actually do have herpes. Plus it just feels like an std type problem even tho I've never had an std. Did you have any type of bumps on your privates since the exposure that did or didn't hurt? Do you also get the twitchings? Lets work together to figure this crappy situation out.

[gracefromHHP]

no pudendal nerve entrapment isn't caused by herpes.  it's when a nerve gets pinched.  

[dads6778]

no actually is not herpes related even though the doctor will think at first because of the symptoms but is totally different my husband was tested and everything came back negative at first the doctor told my husband that he was a very healthy person that he did not needed nothing so we researched on our own and we are trying to see a doctor for pudenda nerve neuralgia so we will see what happens

[jamesap2]

I initially had pain like you did sitting down while I was driving one day about 17 days after possible exposure along with flu like symptoms and pain with urination and it felt like pain in my urethra. It was on again and off again for about a few weeks but the pain with urination and in the urethra seems to have subsided, however a few weeks back for some reason I had terrible pain in both legs like it hurt to walk, I had tons of twitching in the legs, and at one point one of my legs completely fell asleep for like an hour when I was just laying down. I thought the leg thing was prodrome as it is described by like everyone on the internet that has genital herpes but I never had an outbreak. Since then my legs have felt weaker than normal and I have muscle twitching every now and then. As far as my penis is related, I have this weird like swelling or redness of the penis glans (glands) that I cannot figure out, at first it really had me thinking it was herpes but it has progressed and doesn't come and go and hasn't really looked the same as it did before my encounter. Fresh out of ideas, first gonna get tested at 3 months for herpes and go from there. I still think that's what is causing everything but maybe I'm wrong. I'm pretty worried though cause if that's not the cause there are probably a million different things that are worse that could be causing this, I used to be a really healthy person too and I just want to be able to run again. I'm starting to think I have something called Fabry's disease but it is super rare.

[w000rried]

Bamboozled,

Any other test results? I'm experiencing the same symptoms. At 6 weeks now and don't know what I'm gonna do waiting another 10 weeks to get tested. I was negative at 3.5 weeks. Thanks.

[bamboozled86]

Well, I saw a neurologist about a wk ago and told him about my symptoms. After doing some routine examinations, he seems to think that my twitching and random pains may be due to lack of sleep and possibly anxiety. Also my MRI of my back came up normal.  My thing is I've been running off of min sleep for years ever since college and I've never experienced penis pain, occasional irritation after urinating and other problems. So why now?? And the fact that I was in an almost 10yr relationship and never had a groin issue or twitch and then the second I had sex with someone new (me and gf broke up), five days later all hell breaks loose with my body!! Something's not right here. And the fact that none of the tests I've had will produce a sliver of evidence that something is wrong is pissing me off! That's why the only thing that makes sense to me is herpes or some form of virus. i still hope that I have neither, but I know my body too well to be naive and think its just stress.

[bamboozled86]

Had a follow up appointment with my neurologist today and had an EEG (i think) test done. It's the test where they shock you to test your nerve endings. Anyway, like I expected, nothing out of the ordinary was the result. My nerve endings work fine. This test is used to determine if nerve issues stem from the nerve root (spinal cord) or nerve endings ( bottom of legs/foot). This seems to indicate that if I do indeed have a nerve problem, that it is originating from the nerve root. Now this doesn't help me at all knowing that herpes tend to hide in the nerve root and there is information that herpes can cause nerve pain. Not to mention other ppl online saying they had muscle twitching and/or leg and groin pain before or after they were diagnosed with herpes. What am I to do now?? The nerve pain seems to have subsided a tad  but is still there and the twitching has not stopped since it began almost 4 months ago. Plus, I still experience the irritation after urinating every now and then. Do I need to get blood tested again?? Maybe, I'm one of those people that don't produce enough antibodies until waaay later. Almost over a 1000 bucks in med bills and tests and still no answer. I've just about had it with this problem! And it is very real!

[gracefromHHP]

EMG test, not eeg.

you won't have symptoms from herpes for this long. continue to follow up with the neurologist as needed to try to get to the bottom of this all.

[MedGirl4Health]

I am a female.  I have similar symptoms after unprotected sex (intercourse and oral sex) with a man who could possibly have HSV 2. He swears he gets tested regularly and is 100% D/D free and clean.  Day 2 after the encounter I started experiencing itching and swelling in vaginal area without any discharge.  From day 2 till day 6 or 7 my vagina felt swolen and very red.  I also had sore throat and swollen glands on my neck. I never had any lesions, blisters, bumps in the genital area.  Two weeks after the encounter I had a blood/urin/vaginal smear tests for all STDs which came back negative.  At the same time I developed a cold sore on the bottom lip of my mouth.  Before that happened I felt tingling in my lips for about two days.  Day 7 til  day 10 after the intercourse the itching all over my whole body was uncontrolable.  The itching stopped but now I get muscle twitches (fasciculations) especially in my legs.  I never had those prior to the encounter.  I also experience itching on different parts of my body at times.  It has been 4 weeks and now I have a second cold sore on the bottom lip of my mouth that for a week.  How can I determine what is happening to me?  I have had a complete physical, and the doctor cleared me of all STDs.  He suggested to test for STDs continuously every three months to be sure.  

[bamboozled86]

Have you always had cold sores before this encounter or did they start after your encounter? Did you engage in oral sex with the guy? I don't see how your results are clear if you have cold sores since cold sores are indeed herpes. Anyway, what you are describing as far as with the twitchings mainly in the legs is what I am dealing with to this day (now 6 months since encounter). This is far too common to just pass off as anxiety in my opinion. And nobody seems to have a good answer. I'm thinking about going to get blood tested again very soon. Hopefully, i will get some closure.

[godschild314]

ifeel all ya. . its tough. . n im startn to forget how it even feels to feel normal
stay up and stay positive. . .pray
things will be ok :)

[Matt238]

I am another in the same boat as you all developed same symptoms after a sexual encounter with questionable female. Been almost 7 months and numerous rounds of testing stds all neg, just took another today so will see results. My worst symptoms currently are  sciatica and sitting pain the nerves in buttocks
and thighs are fried over this. Seeing a neuro but pains still come off and on. One interesting thing was for two weeks i took a months worth of herpes antivirals and i had no symptoms what so ever,i mean none! I am attempting to do this experiment again to see if it was coincodencs but this points to some sort of virus in herpes family causing all this problem despite the test results.

[bamboozled86]

Grace, do u have any additional insight into what's causing these symptoms? it's been awhile since I've posted but there are a couple ppl that have now posted in this thread having similar symptoms as I have. Since my original post, I am still suffering from whatever this disease is. Some days are better than others, but that's because I'm learning how to live with the prob a little better. Leg muscles are still twitching till this day. My neuro doesn't think I have any nerve issues but  has me on Lyrica for the nerve like pain I've been experiencing but I feel like I'm still not better.
Somebody has to have an answer to this? If its not herpes, then why won't I feel normal? I'm not stressed. I've actually been having a great time recently, but my body won't cooperate and I fear I am stuck with this problem forever now.

[gracefromHHP]

honestly not too much I can add that is different from my original post to this. it's not a herpes issue. continue to follow up with your neurologist as needed to try to get to the bottom of it all. so many other things out there besides herpes as well many medical conditions that can cause issues. you don't always get to the bottom of it all quickly or in a visit or two.

best of luck!

[Sadsadgirl45]

I am going through something like this now. I had unprotected sex with a guy a month ago. He claimed he was clean. I got tested about 5 days after exposure everything was negative except my Hsv2 igm test. Two weeks post exposure the Dr. tells me that I most likely just got hsv2 and I am freaking out about everything, but no symptoms. Then they have me start taking valtrex, my lower back starts hurting, shooting/shock/ and pinching pains on my back, butt and legs. Then in my arms, ribs, upper back. Pretty much everywhere. I also started feeling like my bladder wouldn't completely empty and had to go to the bathroom all the time. This has been going on for about 3 weeks. I am almost 5 weeks since exposure, and praying that I do not have hsv2. I have no lesions so far, I don't have any flu like symptoms etc. Just the pain and the bladder thing, and the stupid igm test.  I am actually reading a lot about anxiety, and it really can do these things to you. Prior to my stupid encounter, I had a lot of pain in my head/shoulders and would get pain in my legs and arms, I don't know if it was just like this but it is possible especially having this in the back of your mind all the time.

[noman1234]

Preface: I received unprotected oral sex from a woman whom I didn't know. I have always had sex with longterm girlfriends. This was a first for me!

Initial symptoms (first week): I felt an itch on the tip of my penis. A sporadic traveling itch all over the body that dissipated after two weeks. No blisters or lesions on my genitals.

Current symptoms (3 months after): Glans (glands) of my penis (circumcised) looks scaly--but no other symptoms of a fungal infection. Little white bumps (pearly papules) have increased on the shaft of my penis and have now spread to under the glans (glands), an area which has never had them. Occasional tingling and stinging sensation along the body and head of the penis.

Initial tests (1 week after potential exposure): HSV 1/2, chlamydia, gonorrhea -- All results are negative
Secondary tests (2 months after potential exposure): HSV 1/2, chlamydia, gonorrhea -- All results negative

Summary
You guys are not alone. I can relate to your feelings of frustration, isolation, fear, and helplessness. I feel totally embarrassed discussing this with nurses and doctors, not to mention friends or family. Forget about having sex, I am isolating myself from my family because I don't know if I am contagious or not.

Emotions aside, the stinging sensations are quite real and they are not stress-induced. I don't understand why the medical community insists on testing for just four conditions and attributing anything that is outside of those four as "stress-induced"!

If anyone here has had a diagnostic breakthrough, I would be eternally grateful if you'd take the time to inform us of your discovery.

Your friend-in-need

[bamboozled86]

Ok, I am thoroughly confused and ultimately stressed out!! I need answers.

Went to get a repeat blood test for Herpes 1 & 2 last week because I wanted piece of mind if I had it or not (i have tested for both 3 times already, last test at 12 wks past possible exposure). Frustrated with my unknown condition, I also asked for a whole host of other tests including HIV, Gono, Chlam, Vitamin deficiencies, and even Lyme Disease. It has now been 7 months past possible exposure so I was hoping to get some definitive results. Got results today..... Everything was negative except for Lyme Disease and HSV!! My vitamin d levels were a bit low as well.

Here's the thing, the HSV test was a IGM I/II combo test and the results were 1.47. It does not differentiate the types. Now, I know by reading on here that the IGM test is flawed but is it really? And if it is, why would they still use it to test? I have always asked for a IGG test (which were all neg in the past) but for some reason they decided to do a Igm. I have already given blood for a Igg and possible WB test for Herpes and will hopefully get results on those sometime next week. I wanted to say that I'm not surprised given the circumstances and that I did have unprotected oral sex before all these symptoms came up but now I am skeptical about the test results.

Now for the Lyme Disease. The results were that the IgG Western Blot was negative but the IgM WB was positive at 1.19. The doctor says that it means that it is a recent infection. This completely caught me off guard since I don't remember being bitten by any tick recently at all.

Could I have been having Lyme disease symptoms all this time or did I indeed contract herpes and sometime later contracted lyme disease?? Can lyme disease trigger a herpes IgM test to test positive? The fact that I have had bumps appear on my penis and the prostate and urinary issues make me feel like I do indeed have herpes but can Lyme Disease been the culprit for those symptoms? And if it is a recent infection, why is there no rash or tick bite mark anywhere and why have I been having muscle pain and twitching since MAY?

Anyway, I wanted to update my thread to keep ppl informed on my ongoing saga. Any comments are extremely appreciated.

[gracefromHHP]

igm herpes testing has some use in infants but not in adults. really nothing you can ascertain by a + igm.  

I know nothing about lyme disease testing.    I'm sure we have a forum for that here somewhere to post there for that part.

[venkatahelp]

You might ignore this comment just like you ignored the many negative herpes tests, but I pray that maybe, just may be, this can bring you back to living your life. I will post this for others like you and me.

I was just like you, found that cold sores are caused by herpes when I was in college, and freaked out so badly. The cause of all this was the Internet, and the fact that herpes has been associated with SO many different symptoms such as having flu like symptoms, pain etc. I kept examining my self and finally got a bump on my nose, which I knew 100% was herpes. I went in for antibody test and it came back positive for HSV 1. I was in tears over the phone but the lady did not even seem to care, she said it so casually. I said, is this serious? She laughed and said no, and that the bump on my nose is probably not even herpes related.  She continued and said you have antibodies for HSV 1 because you most likely got it as a kid and almost all of your friends are likely to have it, then the call ended. I was devastated, all from getting a bump on my nose. I did not share drinks or any contact; did not kiss anyone for 2 years because of that. I was a student in college living in constant fear and depression. It took those 2 years to finally accept that it is no big deal as I saw cold sores on so many people, including my dad.

So after 2 years, one drunken Halloween night, I had protected sex and unprotected oral with a girl. This was the first time I had sex. The morning after was one of the worst mornings ever, because fear kicked in that I might of caught herpes. I imaged thousands of scenarios. What if I kissed her, and I was shedding HSV and then she gave me oral, so it got transferred to genital, and I was drunk, so my immune system was probably weakened so BAM, I MIGHT of TRANSFERRED it to my genitals. See, during or before this encounter, I remember having a little open sore on my scrotum. I did not hurt nor itch and did not even notice until I peed. That was only time I saw it, didn't worry, never looked for it again. 2 weeks after this encounter, I RANDOMLY remembered this sore and had a heart attack thinking it was from herpes but it no longer was there. There is actually a very good chance that I dreamed this because I honestly would have worried my self to death and went to the doctor and not just casually ignored it. Also the fact that it randomly popped in my head makes me suspicious.  So I honestly think it was a dream or happened way before in my life. BUT that did not stop me from googling and reading. I felt so many of the symptoms you described, twitching, tingling, pain, soreness, discomfort in the region, burning sensation and every other symptom. I went to the doctor and described the sore and all these symptoms and he assured me that it did not sound like herpes. I went back six times; to the same doctor and 3 more times other doctors who all said nothing I descried sounds anything like herpes. But I could not take that, I kept reading forums, many on here who were like me, and kept "feeling" these symptoms and associated it with herpes. The seventh time I went, the doctor took my hand and walked me up to the university counseling center and stood there until I made an appointment.

I will now cut to the point. I lived my life like this for the past 4.5 years, in constant fear. At different occasion through out those 4.5 years, I convinced my self I transferred it to my eyes, anal area and even buttocks. Went to so many doctors, spent so much time and money. Caused so much constant stress, it is unbelievable, until one day I put an end to it.

I got a little tingle on my lower lip and I went right to the mirror suspecting a cold sore, a incredibly tiny spot, that was crusty.  I do remember cutting my self at that spot from shaving 5 days before that. But panic started to sink in and I kept pressing on the area to see if it would hurt, and guess what it started to hurt a little. More nervousness took me over. But for some reason, I decided to start rubbing and pressing on my UPPER lip. I did it for a while and focused on it and guess what? IT STARTED HURTING. Just like the bottom lip. I shut my eyes took a deep breath and finally pressed my bottom lip, at that spot, this time with an open mind, NO PAIN. I had moment that wasn’t like any other. I finally saw the power of my brain.

I wrote this in detail so it can leave a lasting impression and help you get out of the hell you are putting your self through. See we have severe herpes anxiety, which made us hypochondriacs, that is the worst and a trillion times worst than having a herpes outbreak every hour. The Internet became our downfall. We are so powerful in our thoughts and beliefs that we make the mind start feeling symptoms. If you focus on an area in such a deep way, you WILL, and I repeat YOU WILL notice symptoms. WE ARE NOT A MACHINE that stays still, we are a living thing.  There could be millions of OTHER reasons that can cause these untypical symptoms we associate with herpes. And herpes having so many common symptoms, you can always associate one or 2 with them and then the CYCLE STARTS AGAIN. Doctors know what they are talking about, they dedicated their life to help, trust them. What you need to do is tackle your anxiety and I promise you this will all stop. If there was a machine that scanned your genitals and had a proven accuracy of 100% of detecting ANY herpes EVER, and you tested negative, then may be that could ease your mind. But guess what, YOU WILL MOVE TO OBSESSING OVER ANOTHER STD. The problem isn’t the symptoms, it’s your mind. It is so extremely powerful, you make almost make it do what you want. Go look at the symptoms for anxiety, many of symptoms you describe such as twitching, pain, burning are ALL PART OF ANXIETY. It is the stress that is doing all this, the fact is we are HERPOcondriacs, and you testing negative both times on antibodies and still worrying completely confirms this. The .0000000000000000000000000001 chance that it might be herpes, who cares? Not caring is easier said than done, I KNOW. But understand that you will never know for sure and guess what, SO MANY PEOPLE HAVE IT.  It is a skin nuisance that rarely causes anything serious what so ever. If it happened anywhere else on the body, we would not care as much. Big part of fear stems from thinking we are going to spread this and that causes extreme stress. THIS FEAR STARTED AND ALL CAME FROM THE STIGMA OF HAVING HERPES CREATED BY THE OUR SOCIETY AND NOT FROM THE ACTUAL HEALTH PROBLEMS ASSOCIATED WITH IT. Why do you think cold sores and genital herpes are viewed SO DIFFERENTLY when they can come from the SAME exact virus? SOCIAL STIGMA.  Ask yourself, is this really something I should be loosing sleep and peace of mind over?

LIFE IS SHORT, go live it, it is beautiful. Your life is at the top 1% of the world, living in a country like this. Billions of people suffer from REAL problems. There might be a time when you have to deal with REAL problems such as death of a loved one or a serious illness, imagine how you would react then, when you react like this to something that causes no real health problems. You are making a living hell for yourself. I know it because I was you for 4.5 years. There is going to be a time, when we all pass this short life, it could be years from now or it could be tomorrow or it could be the next hour. At that last waking moment, your life will flash before your eyes. Make sure it’s worth watching.

[bamboozled86]

I appreciate your words of comfort and I agree with everything you say about the mind being a very powerful thing to overcome. However, the twitching, muscle pain/joint pain, fatigue has been real as I have never experienced these symptoms before in life. And the fact that I just tested positive for Lyme Disease makes a bit of sense because those are some of the very symptoms associated with the disease. So this can't all be in my mind.

Now, as far as herpes... I have never ever had a cold sore. Nobody in my family has. And I have tested repeatedly for HSV 1 and 2 and never showed a trace of a positive result. Even though I tested a few days after my suspected exposure, i did it as a measure to see if I had the virus all along.  Only now have I just produced a positive IgM test for HSV 7 months after this exposure. Also, during this 7 months, I have had 2 very suspicious bumps on my penis that I have never seen or had in my entire life although they don't fit the typical herpes lesion in appearance. I now notice tiny almost grain of sand size pimple like white bumps appear on numerous occasions since this encounter. They never hurt and they almost always pop within hrs by themselves.  ( And i have always been inspecting my penis even before this encounter) I have always been very conscious about my heath down there. Not to mention, the enlarged prostate feeling I had shortly after my exposure which is what started all this to begin with as I couldn't pass it off and I needed doctor's help. Why would a healthy then 25yr old have an enlarged prostate out the blue? I also had a stinging pain in the rim of my penis head in one area alone at the same time.

I am a big believer in anxiety! I have suffered with bowel problems everytime I get extremely nervous and other hosts of anxiety symptoms too. But I knew from the min I started having the above mentioned symptoms, that it was something beyond a mental issue and was indeed provoked by a virus or bacteria. My initial blood work when I first got tested was flagged for high Neutrophils white blood cell count and Low Lymphocytes. This is a common indicator of infection. So I know something is wrong with me. I won't be naive and pass all this on anxiety. And my recent tests just may have just confirmed that. But it has also left new answers to find.

[bamboozled86]

Grace, I know you are tired of my story but I could use a bit more clarification on the IgM thing. I also hope that you have read all my postings on this thread to have a better idea of why I am confused with the herpes testing.

Like I've stated before, I have been tested for herpes 1&2 numerous times after possible exposure. 3 IgG tests and 1 IgM tests. All were negative for the virus. But these tests were also all before my 7 month recent test. I just took another test but they did an IgM instead of an IgG. This time the IgM came back Positive at 1.47.

Now, I know that majority of people have oral herpes since childhood, but I am not one of them. My previous tests alludes to that. Plus I have never had a sore of any kind on face or genitals. Have you heard of people that never had the HSV virus testing positive on an IgM test and were indeed negative for the virus? Can the IgM test that I just had be actually reading antibodies from chicken pox? I did have chicken pox as a toddler. My point is how can you be sure that the IgM test is flawed and I should disregard it given my recent background and potential exposure? I now believe that the lyme disease I have just tested positive for may be responsible for the nerve pain and muscle joint aches I've been having but what is responsible for those bumps on my penis and enlarged prostate symptoms shortly after I had my encounter? I'm really worried about this because I just met a wonderful lady who I have been spending time with and I would hate to give her this virus because I ignored the potential warning signs and now positive IgM test. I need to be sure.

[gracefromHHP]

yes, many folks test + erroneously on the igm herpes test which is why we don't recommend it's use. your provider has erred in ordering this for you and has caused you unneeded anxiety.  

feel free to pay to post to Terri Warren, our herpes expert here on medhelp for further assistance too.

[bamboozled86]

Ok. So I have an Update on my status.

Last week I took a blood test for a host of illnesses including herpes. As stated earlier in my posts the IgM herpes i/ii combination came back positive with a 1.47 index. I also had a positive result for Lyme disease. This test was done at about 7 months past exposure. Since there is a consensus that the igM test is highly flawed for adults, I immediately asked to be retested with a igg type specific test for herpes 1 and 2.

Got my results back from that test today and the results were NEGATIVE for both types! There was even another igm test done and both types were NEGATIVE. This igm however is not a combo test like the one I took earlier  and seems to differentiate the types.

Now I would be lying if I said that this wasn't terrific news for my situation as its been over 7 MONTHS past possible exposure and my igg test for both types are negative just like the results i was getting at 1wk, 4wks, and 12wks testings. But the flip flopping of the igm tests has me skeptical with the accuracy of all of these blood tests. However, I will take this news as a sign that I possibly don't have the virus and continue to pursue whats causing all my symptoms, which still persist today starting with the lyme disease thing i tested positive for,which i still have no idea how that could be possible. I also got some vitamin d supplements to help combat my vit d deficiency.

Grace, I would like to know your opinion on my test results now? How common is this where people are lead to believe they have herpes from a blood test but then receive a negative result later? Also, what's the chance that all the igg tests are actually false negatives? Can I move on from this herpes fiasco finally? I hope so, because I have a beautiful lady I would like to take things further with and I want peace of mind and not putting her health in jeopardy. Thanks

[gracefromHHP]

no reason for more testing. congrats!

[worriedintexas2012]

I'm so curious . . . what did you find out?  Did you nerve issues resolve after closure?

[bamboozled86]

I am still waiting to have my appointment with my infectious disease specialist . Hopefully, I will be seen sometime next week. But my nerve issues still persist to this day, albeit it is not as bad as it was in the initial months. I am on Lyrica for the nerve pain and that seems to help and my neurologist suggest that i continue using it for a few more months to see if it continues to improve. I will continue to update my saga when more info becomes available.

[Bhealthe]

Have you considered yeast/candida? Doctors tend to go immediately to antibiotics and treating bacteria. It is possible for men to develop yeast issues (think jock itch). You also took 10 days of antibiotic which kills bacteria but can open you up to overgrowth of yeast. Many docs do not look at fungal/yeast infections but they can cause many awful symptoms that seem unrelated.

[bamboozled86]

I very much have considered yeast/candida. It was one of my concerns from the very beginning, but all the doctors always dismiss it as an issue. I asked my urologist this very question during my last visit and he said it would have showed up in my numerous urinalyses. I don't know how accurate that statement is however.

[comfortoall]

It very well may be Herpes. It may very well be something else. I am in the medical field, and I can tell you that there are circumstances, although rare, where Herpes I or II, especially Herpes II Genital, exhibits pain and stabbing just as you experience, especially in males. It seems that muscular and athletic men sometimes complain of extreme buttocks, hamstring, groin, calf, and foot pain after contracting genital Herpes. I had a patient whom was 48 years old and had never had Chickenpox as a child, He had brief unprotected sex with a known Herpes II female. His initial "outbreak" was very small, Only one blister and some rash. Then the virus went into the nervous system where he experience severe pain in his back, buttocks, legs and feet. This continued for over two years before subsiding. He has had it now for five years and still complains of shooting pains in his legs, groin, and numb toes, thought to be from nerve damage by the virus. A virus is not a living organism, but contrarily tries to "re-program" your cells to their structure. The body reacts by producing specific protein compounds to render it inert. The body can not completely rid itself of the invading virus. Every virus you have ever had is still within you. It is simply kept in check by the body. The Herpes virus never goes away, but takes refuge in the nerve axiom where the body can't get to it. Sometimes this can cause severe pain and suffering, sometimes the suffering is for life. The chances of severe reactions from Herpes is rare, but it does happen. Every immune system is different. Some can't quite develop the antibodies to fight the virus so the illness lingers more than it does in others. Some people find that herpes is no big deal, as their bodies fight it very well. Some even don't know they have the virus, since they have never had a breakout.
My best advice? See a doctor, and discuss all possibilities with them. The symptoms you describe are very rare for Herpes but they do exist. If it is Herpes, a course of antiviral should alleviate the symptoms. There are more exacting blood test that do find Herpes antibodies that standard testing does not. Find a specialist and eliminate the guesswork.

Good luck

[gracefromHHP]

really sweet of you to come and try to get someone doubting their negative testing after minimal risk and  possibly get them anxious again.  

phn from herpes simplex doesn't often occur. what few studies we have on it shows that it's relieved with daily suppressive therapy. It's not something that we try to encourage folks that they have needlessly here on the forum.  There is no reason for this poster to seek out a herpes WB - their testing was negative multiple times , their symptoms aren't consistent with herpes and they've tested + for lyme disease which is known to cause these symptoms more often than herpes does.  yes indeed there are exceptions to the rule but thankfully those exceptions are few and there's no reason to panic people needlessly - it's not what this forum is for!!

grace

[comfortoall]

Quite simply, I a specialist in the area of viral infections is what is needed. Herpes antibodies are not always produced to the level of detection within the first six months, and sometimes even a year.

Many of my colleagues agree with you that there are few if any studies linking Herpes II with Zoster symptoms, however, this does happen, and I have seen patients with Herpes II that exhibit classic Zoster symptoms. I have personally treated patients with lingering pain in the posterior and legs years after their first outbreak of Herpes II. Many report stabbing and shooting pains, most of these being men.

I suggest you research the Great Brittan studies on certain H II sufferers that were not helped by antivirals and indeed exhibited Zoster symptoms.

Again, nothing is more important that seeing a doctor. This is not trying to instill panic, but to rationally direct people to the proper specialist whom can help.

[Rocketsrock]

   I recently read your post...as soon as you see a breakout, you must be tested for Herpes...the virus can only be tested for 2 days.....My Husband contracted Herpes after 14 years of being together. Unfortunately, he gave it to me. I have terrible leg spasms and breakouts. Herpes infects your entire body.... Good luck

[bamboozled86]

Have you ever been blood tested for the virus and if so what were your results? you've read my posts so I'm sure you've seen that I've been blood tested numerous times since exposure but all my igg tests always come back negative. Even at 7 months past exposure. So you can see why I am soo confused about whats going on with me.

To Grace,
Here is yet another person who is saying that herpes caused her leg spasms. And I'm sure they didn't start till right after she got infected with the virus. I am truly overwhelmed with this whole saga. The more time that goes by and I'm not getting any answers from my neurologist or urologist, the more I believe that I may have hsv1 and for some reason Its not showing up in the igg test.  

[realsmith200]

pls any solutions yet,cos im suffering the same thing but no solutions and im contemplating suicide. pls pls pls help

[bamboozled86]

I have no definitive solutions yet but if you have read this entire thread, you will see that I have tested negative on numerous IGG herpes tests well after 10 months. I have had one low positive IGM combo test but am told that that result is totally useless and should be thrown out since it could be detecting antibodies from chicken pox. I also had other negative igm titer tests for both types so this contradicts the positive igm combo test. I did test positive for lyme disease and as of now, that is what i am being treated for. Lyme can cause all types of symptoms and perhaps it may have been the culprit for my groin issues all this time.

Please seek help if you are depressed. Continue to seek medical opinion on whats going on with you and ask plenty of questions. Do not take their words for it. You know your body. If you do indeed have herpes, it is in no way the end of the world. You just have to use caution. Nothing is worth taking your own life for. I know its tough and I've been there, but it gets better with time. Just continue to search for answers. Thats what I'm doing, and I'm feeling better for it.
Good luck