Negative test results but symptoms

[cartb4]

I had an encounter with another male that mainly involved outer course, some kissing, brief docking and a few seconds of vigorous oral to genital contact (I was the receiving party). The following morning my anxiety level erupted and I sensed some mild burning and frequent urination. That evening I went to ER due to more intense burning sensation in genitalia. They gave me heavy duty antibiotics. Burning subsided for 24 hrs briefly but returned the next day at which time I experienced flu like symptoms and muscle aches (possibly a low grade fever too) during the night while sleeping. The next day I experienced some mild lower back pain but it went away after a day  I continued to experience frequent urination daily and on day 11 following encounter noticed some small raised red (3?) bumps on my shaft. They did not itch or cause any pain. On day 12 I noticed a single water blister had formed and burst while showering ---clear fluid came out and a little blood at the end, then left a small red cut like mark almost immediately. By day 13, there was no sign of any bumps. A week later following a burning sensation in my genitals while sleeping, I noticed a few small pinkish dots appear on my shaft but they were small and did not break open or scab and went away by the following day. For the next couple of weeks I continued to feel unwell and mentally drained due to the anxiety. The frequent urination continued for a month or after encountet. I also experienced constipation for a week or two throughout all of this. I did not have the opportunity to swab any of the lesions or blister. I also noticed during this time a few small pimples and mosquito like bumps on lower back, buttocks and inner thighs but they never blistered or caused any significant pain or itching. I have been testing herpeselect igg 1 and 2 for past 84 days and results have come in negative (0.11 or below) for both. I still don't feel well and anxious that I am now infected orally and genitally. I've never had a cold sore although 3 weeks after encounter noticed a red boil like pimple on my upper lip where it meets my mouth (visually hard to notice but I could feel it; don't recall any tingling or burning beforehand) that went away after 2 days (did not pop open and it just left some dead flaky skin.  At week 10 I noticed a few pink dots on my shaft and some mosquito like bumps on my inner right thigh and flat bumps/rash on belly but dermatologist checked and dismissed my herpes fears. Not sure where to go from here. Still feel like my body is under attack (burning feet, legs and sometimes buttocks and other weird neuromuscular symptoms). Western Blot at 16 weeks?  Or just a waste if time and $$ ---and just face fact I most likely am infected with hsv1 orally and genitally in light of relative inaccuracy of antibody test for hsv1?  I've never felt this bad in my entire life, so I can't fathom what else this could be. BTW, I don't know the other person's status.

[Worndown27]

Everything you had sounds like me, minus lesions. The only lesions I had were on my forehead....so odd. I hope and pray your WB results are negative. It really could be something else....what? Who knows. That's the frustrating part. I wish you good health too. Hang in there!!

[cartb4]

Thank you, Worndown27.  I will look into getting tested for EBV.  My concern is that I had pretty classic HSV symptoms (initial outbreak [burning genitals, flu-like symptoms, water blister] and one recurring outbreak [burning genitals, flu-like symptoms, a few bumps that didn't become fluid filled, but still concerning], so my confidence level that my upcoming Western Blot will be positive for HSV-1 (not too concerned about HSV-2 at the moment given the superior accuracy of this IGG test).  I pray that this isn't the case and that I test negative for HSV-1.  I wish you all the best and a good bill of health from this point forward.

[Worndown27]

I also had acne on my face pretty bad, including small pimple like things above my lip line and around my ears. I had some pimple type things (acne maybe) on my back, including my lower back above my butt crack. I was so sure it was a mild form of HSV, but apparently it wasnt.

[Worndown27]

Cartb4, have you been tested for EBV?  I had a lot of similar symptoms as you. Fatigue, aches, low back pain, low grade fever, frequent urination (Im female). My igg results were low negative up to 17 weeks. I was certain it was HSV1 orally and genitally but it wasn't showing up on igg tests. Then I had odd igg results at 22 weeks. 62.20 for 1 and 27.0 for 2. I was freaking out, devastated and confused by the oddly high numbers. When I had my blood drawn they tested for EBV, CMV and some blood was sent to UofW for the western blot. Thank God for the WB because it came back negative!! I also found out I have EBV. Im thinking....hoping.....that EBV was the reason for my illness a few months back. I beleive it was a mono infection, but I'll never know for sure.  I just thought it cant hurt for you to get tested for EBV. I still have issues such as vaginal discharge, vaginal irritation, anal burning, but Im not testing positive for anything but EBV....so far. I pray you find answers and some relief. This stuff is scary snd stressful. I feel so much better than before. Not 100%, but probably 80% better now. I just wanted to throw this out there for you.

[cartb4]

Thanks.  I pray you find some peace.  By the way, do you avoid certain arginine-rich foods (chocolate, peanuts, etc.) or go out in the sun alot without protection?  I guess that would be one way to find out if one has oral herpes? (not sure if the arginine theory has been proven, though).  Take care.

[Bigtimeworried55]

The only symptoms I have are odd lesions that occur on my list p-line and near lips which resemble very closely to a cold sore. However, they heal much quicker from what I gather in comparison to cold-sores.

I have frequent canker sores in my mouth as well, but I attribute that to just that...canker sores because I've swabbed a few in the past and they have always been negative.

God willing, I haven't had any genital issues for several months. I hope it stays that way forever, but you never know. I took my last IGG blood test a year and a couple months from my exposure and it was negative like the previous 16 tests I have taken. It makes me hope that the genital lesions I experienced are not herpes and will never return, I hope at least.

My oral symptoms concern me, but at this point I have done everything I can with what's available. Outside of a genital lesion or obvious cold-sore, I do not plan on testing for herpes ever again. I have a folder filled with tests results.

Hope all is well with you. Take care.

[cartb4]

Bigtimeworried55,
Any recent symptoms (genital or oral)?
Are you continuing your testing?  
Any closure?
God Bless.

[Worndown27]

Just as I start to feel better about my low negative results I read comments like yours and it makes me worry again. I too have strong oral and genital symptoms, but no typical herpes lesions. I get small pimple looking spots on my upper lip but they are tiny. I also have a dry patch in that area. Too many symptoms to list again. Im currently sick with a chest cold virus type thing. I havent felt this sick in years! Im so upset about all of this. I probably ruined my life over it.

[Bigtimeworried55]

I have also spoken to Terri Warren several times. You can view my post on her forums at WestovetHeights online. She along with nurse practitioners at U of W have also dismissed my issues as herpes related. Mostly because they trust the tests available that diagnose this and mine have been negative.

Yes, I did have neurological issues once I was infected with whatever it was I was infected with. I had extreme muscle twitches in my thigh, calf and leg area. This lasted 6 months before slowing down and still occasionally occurs. I had burning on my perenium and buttocks area. The burning on my buttocks returned to one side multiple times and was the most annoying.

I had night sweats for 2 weeks upon the arise of my symptoms where I would wake up my body would be drenched in sweat. That scared me the most.

Your oral lesion is sketchy because the process you describe (formed, burst, crusted, healed) is that of a cold sore. But cold sores don't usually go away that quickly. I would this isn't herpes related. However, please seek a swab anytime these things pop up, this way you can properly diagnose what it is and eliminate the guessing game.

Yes, I would take the Western Blot. It's the most accurate antibody test available and I took it for the reasons mentioned above. It's worth taking the best and then go from there.

[cartb4]

Based on my description of supposed cold sore in my original post, do you still believe this was herpes since it disappeared after a couple of days?

[cartb4]

Thanks for your feedback. I did call and speak with Terri Warren and she suggested I test with Western Blot @ 16 weeks. Do you agree?  She and clinician at U Washington did not believe that this was herpes as described above. I realize that swab test would have been more definitive. That is why I also ordered PCR swabs from Westover Clinic. Are you experiencing any major neurological symptoms?

[Bigtimeworried55]

Welcome to the club my friend. Minus the type of exposure, your situation describes mine to the T. Symptoms almost identical. From the oral lesion from exposure, to the genital symptoms and odd blemishes on stomach and thigh area.

Well guess what? I did all the leg work for you. Paranoid and convinced I have herpes, I forced the girl I encountered these issues with to test. Low and behold she tested positive for HSV1 and said she had no idea she had herpes. Of course!

That started my testing rampage. I knew I had it. I knew I was dealing with HSV1 and not HSV2 since both her tests (made her test twice) showed a strong negative for it. Well, I have now tested negative for both HSV1 0.30 and HSV2: 0.06 1 year post exposure. I have tested 16 DIFFERENT times and the results and values almost always the same or lower than the prior test.

I have taken a Western Blot at almost 6 months, negative as well for both types. I have swabbed every lesion right when it occurs, always negative. I had a single blister in my perenium area that I popped which released liquid and tons of blood. Swab was negative on that. I can't do anything anymore. HSV1 is very hard to detect in certain individuals. Why? I not have the faintes clue and neither do my doctors. I mean I have never had a blister or lesions on my genital area. Ever! I have sex with someone for the virus and then I coincidently get all these issues and symptoms? I don't buy it. I know my body.

I know I have HSV1 it's just not proven medically. I also met someone on here that had a similar exposure to yourself (male to male). He repeatedly tested negative even though he had frequent symptoms. He knew something was wrong. He tested negative 6-7 times at almost a year from his exposure. After convincing his doctor to prescribe antivirals because of his issues, he decided to test after a month on the antivirals? Guess what? He finally tested positive for HSV2 after 1 year post exposure. 1 year! This testing stuff is not black and white. It's the not same for person to person. Did antivirals help his body develop a proper immune response? How can that be explained? I saw his results. I don't get it.

Testing is just not accurate for some and especially not accurate for HSV1. The guy in question may be an outlier but I'm sure there are many like him who are truly infected but trust their results albeit if even false results.

I wish I could tell you with confidence you don't have herpes, but I don't even believe I dont. Like Terri Warren has said (HSV expert) the tests we have are the best we have. Nothing you can do outside or swabbing any lesion that arises right away and hope to catch the virus that way.

Good luck.  

[Life360_Dave]

No

[cartb4]

Life, just to clarify, from my recollection, the small red bumps must have merged to form a single water blister that burst when I was getting ready to shower, released a clear fluid and bled briefly at the end, leaving a small red cut mark on shaft before healing. Does this description change your assessment?

[cartb4]

Thanks again. BTW, does my description of possible cold sore (appeared on a very frigid day coincidentally) sound like oral herpes?

[cartb4]

Thanks again. BTW, does my description of possible cold sore (appeared on a very frigid day coincidentally) sound like oral herpes?

[Life360_Dave]

Water blisters on penis can be due to molluscum contagiosum, impetigo, bullous staph infection if they turn painful. Herpes most often form clusters as once the blister opens it spreads to the immediate surrounding area and dont bleed.

[cartb4]

Life, following encounter my penis head became inflamed, rougher looking, redder and purpler in areas with some small raised bumps. Any connection with herpes infection?  

[cartb4]

Thanks Life. Do you have any ideas what a water blister on shaft could be caused by if not herpes?  I always associated water blisters with herpes.

[Life360_Dave]

Neuropathy is not from hsv herpes but from zoster herpes which is also called shingles. Igg test are 95% accurate but if you feel you fall into the 5% fail rate then test again. Associating herpes with your symptoms having a negative test at 84 days would not be warented.

[cartb4]

Thanks for taking the time to respond. I keep reading that hsv1 anyibody test is not that reliable and also some people never seroconvert, so my faith in this test is not great. Assuming I am indeed negative, what would explain all of these symptoms?  I have never had anything on my body like this before this. Coincidence that I am having neurological issues on top of everything else?  I read journal respected journal articles linking herpes simplex to peripheral neuropathy and dysasthenia in genital region. To me, my symptoms sound classic but I would love to be mistaken.

[Life360_Dave]

Hi, testing negative at 84 days you can comfortably rest assured that your negative. Also first time symptoms takes about 3 days  minum to develop as the virus needs to duplicate and travel to the spine and then the flu like symptoms would occur.