Avatar universal

Can anyone suggest what I could have? I’m testing negative for everything

Hi. I am having issues that no doctor can nail down for me. 2 months ago, I (male) had a very risky stupid encounter and I won’t go into details here.  About 10 days after the incident I started getting symptoms of all kinds like bad pain when peeing followed a few days later by fever, chills, soar throat, fatigue, muscle and joint aches, not being able to breath fully, night sweating, and lip tingling.  Since than, I have been tested over the past 2 months a bunch of times for HIV 1&2 (4th gen 4x and an RNA test 1x), HSV 1&2 IgG & IgM, syphilis,  gonorrhea, Trich, chlamyda, ureaplasma, mycroplasma, HPV (biopsy of a new small light-colored bump on shaft), and hepatitus.  Multiple dermatolagists physicaly examined me and all say there is no fungal or yeast infection, scabies, genital warts, herpes, or pubic lice. Everything is coming back negative, but one doc did say the area looked a bit red but said I was likely scratching it and causing it.  The antibiotics I was put on at first cleared any possible bacterial infection, but 2 months later I’m now suddenly having a very itchy scrotum, penis, perinium, anus, and less itchy inner thighs.  None of this itching was around until the past week or so. The other symptoms I had for weeks like chills, sweats, sore throat, etc. are now gone. I have a slight redness all over my groin (mostly penis and scrotum) and the itching is broad and nearly constant. It gets a lot worse with hot weather,  sweating/moisture, and at night when in bed. Aside from the broad itching, I’m also getting sudden local itching in the same areas where it feels like I’m getting bitten by a mosquito or someone is poking me lightly with a pin, but the itch goes away instantly when I give it a quick scratch. I wouldnt describe this local type of itching as tingling.

I am now lost and running out of money after all these doctors appointments and tests.  At this point I fear I have HPV or HSV that is mild and not showing up on tests.  The HPV biopsy may have been done on a benign bump and maybe my HSV blood tests were done too early. The most recent HSV 1&2 blood test was 5 weeks after the incident. Is that enough time for a HSV test to be reliable?   Can anyone give me some tips here on what it could be or if there are other tests that could be run? This itching is unlike anything I’ve ever felt before, I’ve had it for over a week, and it is getting worse. So far, no lesions have appeared.  I am  a pretty laid back person and it is not all in my head. Something is wrong and it started with my exposure.
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Avatar universal
The only thing I’d verify is that indeed the mycoplasma strain that was tested was indeed genitalium and not hominis. I’ve seen many urologists (including mine) test for ureaplasma and mycoplasma hominis thinking they were testing for genitalium because ureaplasma and hominis are known as the “genital” Mycoplasmas. If indeed it was genitalium, then I think 3 negative tests 1 month after ABX would be a pretty strong negative.
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If anyone is still following this thread, I am still without answers and have lost hope. My symptoms are a daily problem and new ones have appeared like bleeding gums, itchy eyes beyond anything I've ever experienced in my life, and weird single pimples that are unlike any acne I've ever had and appear in really strange places. Glans sensitivity is terrible every day and I've given up on exercising and walking normally. I saved up for an HSV western blot but it came back negative after so much time to allow for antibodies to build up. Still negative on recent bacterial infection tests with FVU.  I do not know what to do any more but even non-STD tests are coming up with nothing.  If anyone has ideas or can relate I am open to any ideas.  
I'm sorry you're still dealing with this.

It's time to move beyond an infectious disease approach. You have tested for everything and are negative. What about a chemical exposure? Mold in your house? Lead paint? A food allergy?

Think about every single thing that you come into contact with - laundry detergent, soaps, food, clothing, cleaning supplies, toothpaste, shampoo, etc. One by one, change them to all natural products. If you do it all at once, you won't know which one is causing you problems, if any.

Get your house tested for mold. Hardware stores sell home testing kits for under $20. They aren't as accurate as a professional, but professionals are way more expensive, and it's a good place to start. If your house is older (I don't remember the year they stopped allowing lead paint, but you can google it), get it checked for lead paint.

What are you drinking? Do you drink tap water? Try bottled or filtered. Are you drinking a certain type of bottled water? Some have additives, some have higher acidity levels than others.

Do you drink artificially sweetened drinks? Aspartame is evil. I don't know that it causes your particular symptoms, but I don't know that anyone knows everything that artificial sweeteners do. Google aspartame. The stories about it are scary, though officially, it's safe.

Really, start thinking of everything.

I hope something in this helps, and that you start feeling better soon.

Oh and if you aren't in therapy, now is the time. You say you are giving up hope, and that's a sure sign that it's time for therapy. Chronic pain changes people, and is a big contributor to depression.
Thank you for the response auntiejessi. I'm glad your still here.

I have gone to therapy to help me try to reason through my ordeal and find strength to keep fighting for answers and not fall into depression.   I am just convinced at this point it is infectious because I really have tried to eliminate everything else that could be causing my issues. That is impossible, but, I have changed diet, eliminated alcohol (not a big drinker), caffeine (hard), sugar and artificial sweeteners, and processed foods including all gluten. I did that for over a month and it changed none of my symptoms.  Maybe I will try water and simple salads for a month if i can tolerate that strict of a diet.  I took steroids and nerve pain blockers, which didn't make things better but didn't make them worse - which suprised me.

I hate to repeat myself and give you the impression I'm not listening to your advise, but do you think I could be one of the rare cases of people that don't test positive for HSV 1 or 2, like those in the 1% outside of the 99% accuracy of claimed results?  With oral symptoms now appearing, and spots on gums that come and go and cause my gums to bleed, and strange eye itching, I can not yet take HSV off my list. What if I have it in both places? HSV-1 seems more likely to be a possible strain than HSV-2 because it is harder to detect and infections of HSV-2 in the mouth are very rare, right?

Mold test kits may be a good idea, I'l look into them. I also have thought about alkaline diets, apple cider vinegar dosing, or seeing a nutritionist when i can afford it.
Don't just east salads or do an extreme diet unless you are sure it's an allergy. Extreme salads can make you sicker.

If you were only negative on IgGs, I'd maybe wonder, but you are also negative on the WB, which is an entirely different type of test. If you had herpes, it would show up on the WB. You don't have herpes. You could do a PCR swab study, I suppose, but that seems like a waste of money. Terri Warren used to do PCR swabs for people with questionable blood test results. I don't know if she still does, but you could check with her.

Hsv2 oral infections are very rare, and when they do happen, they rarely recur, so people get one outbreak, and that's it.

Seriously, I'd look into mold or some kind of chemical or something, sooner rather than later.

Can you tell me more about the PCR swab study? Do you just mean get a PCR swab done where I feel symptoms? Or the study something more involved than that?
Yes, the PCR study is done when you are feeling symptoms, you do a series of PCR swabs, which are far more sensitive than regular cultures, to see if it picks up the virus.

You can also get just a single PCR swab done when you are feeling symptoms. They can swab the area to see if any virus is found.

Terri Warren used to do the PCR studies. I don't know if she still does or not. Your doctor might be able to do them, though. They'd just have to order the supplies.
Avatar universal
The only thing I’d verify is that indeed the mycoplasma strain that was tested was indeed genitalium and not hominis. I’ve seen many urologists (including mine) test for ureaplasma and mycoplasma hominis thinking they were testing for genitalium because ureaplasma and hominis are known as the “genital” Mycoplasmas. If indeed it was genitalium, then I think 3 negative tests 1 month after ABX would be a pretty strong negative.
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The test result do confirm MG was tested for (MH was on a separate line). I was kind of expecting it to come up positive but was happy and sad it didn't. Talk about feeling conflicted.
207091 tn?1337709493
You should get a copy of all your tests so you know what you were tested for.

Also, when you do a urine test, make sure you haven't urinated for at least an hour before.

That's all I really have to add - badgerMG is far more knowledgeable about MG than I am.
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Good idea. I'll do that.
Well, no luck. A few weeks ago I tested negative for 2 urea and 3 myco plasma types with the first urine stuff while off of antibiotics for over a month as described by badgerMG. I also now have a very sensitive urethral opening with some swelling and redness that varies in intensity, but is always there. I've seen this type of thing posted on here many times by others, all with no answers. One doctor also gave me muscle relaxers to see if that helped some groin symptoms due to spasms and that didn't help either.  

Does anyone have any additional thoughts or suggestions? I am beginning  to believe I have something new or rare b/c no one with my symptoms has found answers either.
You don't know that anything at all happened in that strip club. What if nothing did and all this is either due to anxiety or something not at all related to it?

You have tested negative for every single STD. It can't be that.

Maybe it's chronic pelvic pain syndrome (CPPS). Maybe it's something else. Maybe it's anxiety. Don't do yourself a disservice by only focusing on STDs simply because you were in a strip club.

I didn't go back and look through all the posts, but I'm sure at one point I suggested prostatitis. A classic symptom of that is redness at the urethral opening. Chronic prostatitis is called CPPS. Finding the cause of that can be a struggle, and some men never do. You should see a urologist. If you haven't already, I don't why.

I'm not discounting your symptoms. They are real, and I'm sure very uncomfortable. You deserve to get answers, and to find peace with this whole strip club event. Your next step should be a urologist. Google your area and CPPS and see if you can find a urologist that knows about it and how to treat it, like "urologist cpps New York City" or Chicago, London, LA, or wherever you live. If you are in a smaller town, look for the closest large city, or a teaching hospital. They are usually current on medical trends.
Thank you for the follow up and for staying with me on this thread.  I did fail to mention that I was tested for other things like a complete immune assessment, blood workup and I had a second prostate exam by a different urologist. Still nothing out of the ordinary was noted.  6 weeks of antibiotics also had no impact.

I asked doctors what non-STD tests could be run and all doctors told me I have done everything I can and there is nothing more than can be done.  I guess I have to live with this until something major changes for better or worse.  
Okay, then my suggestion is therapy. It's not because I don't believe you have symptoms, but to help you find peace with this until something changes. I've been there. I have chronic diseases - one that took 20+ years to diagnose and another that took 6 years. It changes who you are, causes depression, etc. Therapy is really helpful.

If you haven't already, consider an MRI of your back. Perhaps you have a pinched nerve or something. That's the only thing I can think of that hasn't been addressed.
Hi Auntiejessi, do you know if Terri Warren is still doing video consults and orders for WB? I signed up for an evisit account and after logging in it said to call a 503 area code number, which is not working for me. It was busy a few times last month and now it just hangs up.   I have read on forums that others are having issues getting through as well.

I am still having issues and have gotten some very slight bumps on my anus that are skin colored, very slightly raised, but not warts from what doctors tell me. Plus, they go away for the most part when the redness goes down. No liquid or pain but they feel just a little chaffed.  
As far as I know she is. She said on Feb 4 that she is - https://westoverheights.com/forum/question/high-hsv-40-low-hsv2-96/

Could you have hemorrhoids? If the doc said it wasn't warts, what did they say they were?
OK I guess Ill just have to keep trying. It has been a few days since i tried the online booking instead of the phone.   The doctor did not think it was hemorrhoids either, and the bumps appear towards the perineum area, a bit away from the anal opening.  The doctor did not know what it was but prescribed a cream that I have already tried.  I was just told to try it again and keep it dry.
How long have you been using the cream? Any changes? What's the cream?

If you hear anything about Terri, let me know. I'll see what I can find out, too.

I tried Triamcinolone and Elidel for about a week on my glans and it didn't help. Now I tried the Tri cream for another week, this time on on my anal/perineum area, and it is not helping or making any changes. I dont want to go back to this doctor.

Is there such a thing as a PCR blood test for HSV? For HSV, I thought blood tests can only look for ABs not viral presence since it lives in the skin and nerves, not the blood. But I have read conflicting information on this.
The PCR blood test for herpes is pointless. People don't have herpes in their blood. PCR serum testing really is only good for CNS testing, in cases of meningitis or something.



So you got the cream for something on your glans, and decided to use it on your perineum? Both of those treat things like eczema, atopic dermatitis, etc. They are non-steroids, so if you have a fungal infection, these probably won't work.

Can you find a new doctor? Maybe get a biopsy?

I figured the PCR test in blood was not a good test in general. there is much conflicting information on the internet.

The cream was prescribed by an earlier doctor for my glans. My new doctor said to try a certain cream on my anus/perineum and it happened to be one I already had from a previous doctor.  Months ago I tried econazol nitrate antifungal and it had no effect anywhere in entire boxer short area.  I tried it first on red rashes on both sides where my legs meet my groin and it did not help. I tried it on my shaft, glans, and anal area and it made no difference.

This latest doctor was another new doctor I might be able to get a biopsy but this doctor said it was nothing given my negative tests and lack of typical symptoms or responsiveness to creams or antibiotics.
Could it be normal skin variations?
I wish that was possible but i do not see that being the case.  These are unusual, have suspicious timing, don't respond to treatment, and have other symptoms in the same or other areas.  
Yeah, I figured as much, but thought I'd ask, to be sure.

Do you live in or near a big city? Is there a teaching hospital near you? If you can get in as a patient at a derm or infectious disease clinic at one, it may help. They are usually familiar with the most current info and cutting edge stuff.
Avatar universal
You can order home tests for mycoplasma genitalium. Chances are they tested you for hominis. That rarely causes symptoms in men. You can literally put your first stream of urine (20 mL or so) the day in the sample, then put full ejaculate in there and send it off. MyLabBox has home tests you can do. Also make sure you are off of any antibiotics for 3-4 weeks.
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Just to be sure I understand you, you are saying I can put my first urine stream of the day and then put full ejaculate in the same container - with the urine in it?
Exactly. A PCR does not care what material it is testing.
OK I will look into that. I've never had any discharge but at this point I'll try anything (assuming I can afford it).
Avatar universal
All of you need accurate testing for mycoplasma done. This means First Void Urine only. Get your full ejaculate tested as well.
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Can you say more?  First void being, first stream of the day after sleeping? First stream anytime of the day?  Do I have to ask for the various types of mycoplasma? Im negative for myco and ureaplasma but I have since learned that there are some different types.  I wonder if whatever tests I took were not testing for all of these types. Who would I see for ejaculate testing , a urologist?
When I had my mycoplasma , ureplasma and trich test done I had held my urine for 5 hours. Doc said that that was sufficient time for the testing.
Avatar universal
Anon YOU ARE LIVING MY EXACT LIFE THAT IT BLOWS MY MIND READING YOUR STORY!  All your symptoms are pretty much just like mine, and they all started after I attempted to have sex with a female who has confirmed HSV2.  I used a condom but it broke immediately and within 48 hours my nightmare began.

I have tested negative on every single STD test there is, and have taken the IGG for HSV 6 times over a period of 10 months and never once has it turned positive.
But I’m even more certain that it’s some form of herpes, because finally a small pimple like bump appeared directly on my upper lip not too long ago.  For months it was only burning and tingling in my mouth area, especially after being out in the Sun for long. And i would get little bumps around my mouth but never right on the lips.  So they could’ve just been pimples, But I’ve never had bumps ever appear on my actual lips like that before in my life as long as I can remember.  
Nothing has appeared on my penis, but the itching, burning and tingling sensations never truly stop.  Anus itching comes and goes as well.  But it usually all starts with back pain that tends to move around my testicle area as well.
Recently, my penis, anus and feet were all burning at the same exact time.  I read that this would be related to something going on in the sacral region of the spine, which makes sense because that’s exactly where genital herpes hides.
I now truly believe I was infected both orally and genitally by this female, even though I never had oral sex with her.  But we deep kissed before I knew of her HSV status. But all my symptoms definitely started after I met her.  And I remember a strange dry rash appearing on my upper lip in the same spot the bump appeared when I first started getting intimate with her.
I don’t think doctors fully understand this virus at all, and that there are many like you and I living with these strange symptoms that go undiagnosed majority of the time.  All I know for sure is that my issues all started after the sex attempt with someone who is HSV2 positive and they haven’t gone away since.  I’ve looked and looked and looked but no other known STD can account for all my symptoms except for HSV.  
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Perhaps no other STD can account for your symptoms because it isn't an STD.

Have you considered getting a Western Blot test done? Yes, the IgG can miss a good chunk of hsv1 infections, so if you think you have it, you should get a WB test done. That would allow you to finally move on. If you have hsv1, and she didn't perform oral on you, it can NOT be causing your genital symptoms.

If you do not have either type, you can finally move beyond an STD and figure out what is causing this.
My story is almost identical to rainy day to story although just recently where I’ve had a constant red rash on my neck I’ve had some skin tag like words appear to that makes me wonder if this could be a mix of herpes and each Hpv?
Sorry voice text^
Herpes wouldn't appear on your neck, and the strains of HPV that are sexually transmitted only appear on the genitals, and sometimes in your mouth.

Have you had anything tested? If you have a rash and skin tags, they can biopsy it, and certainly can do a culture on it to see what's causing it.
I’m going to try to set up a dermatologist appt. and see if they can check them..
Ugh RainyDay, really? Sorry you appear to be in a similar situation. Are you getting the western blot? I'm on steroid cream now while saving for a WB - is that cream a good idea, auntiejessi? I think my symptoms are getting worse, which concerns me since I think I have read that steroids can make herpes worse by suppressing your immune system, even if it is just topical cream. My symptoms haven't gone away for months but they have gotten worse and somewhat improved, making me wonder if these are back to back mild outbreaks with no real asymptomatic times in between.
What are you using the cream for - the itching on genitals?

A steroidal cream won't suppress your immune system like using them orally for awhile will. If you are having an allergic reaction to something - soap, laundry detergent, etc. - and are continuing to use it, the symptoms will get worse, even while using the cream.

If you use a steroid cream on an outbreak, it can make it worse. You don't have an outbreak.

There is nothing here to indicate this is herpes.

You also still don't know that you were actually exposed to anything. Even if you had a sexual encounter with a dancer at this club, sex workers are diligent about using protection. They are protecting themselves from their clients, not trying to expose you to anything. Sex is their livelihood. In order to keep working, they have to stay healthy.
I was using the cream for itching, burning, and some redness that is always there but never fully goes away. It was not helping and I think making things worse for some reason. But I cant see this being a typical skin issue based on my previous symptoms and the fact that my anal and rectal areas are itchy - and not just at the surface of the skin. There is a sensation that is hard to describe in my groin too.

Your right, I have no idea if was really exposed to anything and I would like to think I was not exposed at all since it would be very out of character and like you said, dumb for the dancer to put herself at risk as well. But like RainyDay, I've just about ruled out everything and I keep ending up back at herpes because of the symptoms and the limited reliability of the normal IGG blood tests.  I have asked doctors for other tests they can run that are not related to STDs and they say there is nothing to test for that would make sense with my symptoms. Im still open to other possibilities from herpes but I have to keep bringing ideas to doctors since they seem stumped, say incorrect things, and want to dismiss the issues and point me to the next doctor.
Actually, topical steroidal creams can adversely affect your immune system.  If you look on the labels of all of them they will warn against long-term use.  The steroids can penetrate through your skin to a degree, but mostly what they affect is what they're usually used for treating assuming you're treating something that is bacterial or fungal.  Both steroids and antibiotics can make it much more likely to get a recurrence, which is how the topical stuff can in fact affect the immune system.  A lot depends on how strong the cream is, as the ones sold over the counter aren't very strong while the prescription ones can be much stronger.  It also depends a lot on the person -- what affects one person won't another.  So do limit the use of cortisone if you are able.  Peace.
Avatar universal
I feel for you as I have been dealing with something similar going on 2 years now! No answers, I have seen several people post on here with similar symptoms that blood tested negative for hsv1 but swabbed positive genitally,
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What tests have you gone through? Do you have redness, itchiness, some burning, and mild rashes that never turn into lesions or really get painful at all?
Avatar universal
So... this sounds vaguely like thrush.  I would look at exposures, change of diet, change of medication beyond what happened in the sleazy club.  Also don't discount a yeast infection/athletes foot spread to groin.  This typically is a burning itch and can smell bad when scratched.  Lotramin Xx strength, used as directed OTC can't hurt to try.
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207091 tn?1337709493
A herpes test at 2 months would be about 70-80% (ish) accurate. I really don't think this is herpes. At 2 months, you'd have had actual blisters or sores with all this other stuff. Herpes doesn't just give you the tingling without an outbreak.

I'd say, at this point, do ALL the tests. Keep going until you find out what it is, and don't just focus on STDs. You don't know what happened - what if nothing happened, and you spent months on STDs and actually had no risk, and were missing something else?

Mono tests are pretty accurate, though they do have some false negatives - https://labtestsonline.org/tests/mononucleosis-mono-test

At this point, what will it hurt to try and find out?

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Thanks.  That's re-assuring.   So broad, intense itching plus the periodic localized, bug-bite-like itches that have been happening for maybe a full week now would have definitely given me sores by now?  One thing I did not think to mention was the slight feeling of having sunburn in my groin and across my back and part of my stomach. I have some single brown spots and single red pimple like spots  that do not hurt or itch - but I usually have really clear skin. I had no sun recent exposure in those areas too, so the slight hot feeling is concerning when thinking about herpes.  If I have had all these itching, mild burning, and localized bite-like feelings for at least a week but it has not resulted in visible lesions or any actual pain, that does not sound like herpes?  How common is that scenario? Herpes is on my mind since there is no vaccine or medication that can truly prevent it's spread - right?  I will also look into non-STD tests and see if anything turns up. I know I shouldn't focus only on STDs but this nightmare all started right after that event. I will have to find some money and new doctors as the people i have seen all say i'm fine and they do not seem to have anything else to offer - even a infection specialist.
OK wait - I'm confused. What's been happening for a week vs a month and a half, give or take?

Has your doctor seen these brown and red spots?

That doesn't sound like herpes to me. Again, I'd expect some blisters. Prodome would only be a couple of days, tops.

If I was going through this, I'd be planting myself at my doctor's office, every time I got new symptoms. You should be too. Take some pics of it to show the doc in case you can't get into the doc immediately.
Sounds like a bacterial infection, especially the 'bug bites' that you describe, I'd do another round of testing for bacteria, and this time ask for pcr, or a swab, sometimes the dna is diluted enough to be undetectable so make sure if you give a urine sample to do it at least couple of hours after you pee, ideal first void urine will yield the most accurate results.
Over the past week or so I developed the itching, slight hot-skin feeling, and now these random torso spots. The spots are not itchy or painful, not clustered, and don’t look scary but they are not typical for me.  Before this, over the past 2 months I had everything from chills, sore throat, fatigue, urination pain, and other symptoms. But no itching, spots, or hot-skin feelings anywhere. I was focused on bacterial infections and then had an HIV scare but it seems those arent what is going on. I started to put this all behind me and try to move on but the itching and the back stuff popped up. I did keep going to doctors and found new ones when my regular docs insisted i was fine but now the new doctors are saying the same. It is exhausting and so depressing.
You think it could be bacterial still? I hope that the bug bite feelings that come and go are not what other's would call tingling, leading me back to herpes. But my prodrome symptoms have been going on for a week, so maybe it is not herpes as my blood tests showed.   Maybe I will ask for a PCR test or swab as you suggest. Where would I ask them to swab if everything broadly itches and the bug-bite feelings move around and are temporary?
Not everything bacterial is an STD. I'd ask them to PCR swab the area where you are feeling the most symptoms.

No STD presents with symptoms you are describing - "everything broadly itches" and "bug bite feelings". There is definitely something going on, though.

While you are doing these tests, make sure you are drinking enough water, and laying off the alcohol and caffeine, if you drink those.

When these symptoms started, did you start using a new soap, laundry detergent, shampoo or dryer sheets or anything? Did something you eat regularly come out with a "new and improved" flavor? Did you start eating a new food? Start thinking of everything. Maybe it's an allergy.

Thanks.  I have really changed nothing in my diet, soaps, detergents, or anything else.  I will give it more thought.  I know i keep returning to herpes but can you tell me if herpes can cause pain peeing within about a week from exposure with absolutely no other symptoms of any kind, anywhere at that time? I'm wondering if the pain peeing was the first and only sign of HSV, then it went away on its own in 2-3 days, then the flu-like symptoms came on after that, then everything went away, and now I have the remaining HSV issues coming up...  except for visible lesions so far. Could HSV come on this way?  Time to get some water in the meantime.
If you have pain with urination from herpes, it's because you have sores in your urethra. I'm not a man, so I haven't experienced this, but I hear it is PAINFUL, and not just like some burning or mild pain.

If you had lesions, I'd say it sounds exactly like herpes. Without the lesions, though, I'd doubt it's herpes. With all those symptoms, you'd have had sores by now. Those symptoms don't appear without lesions.

This forum and our herpes forum are FULL of men with symptoms similar to yours. I can't remember one that's come back with a positive herpes test. Some have chronic prostatitis, or CPPS; others have pinched nerves, or anal fissures, some have anxiety (and I'm not minimizing their symptoms - anxiety definitely produces very real physical symptoms), some have allergies, some are dehydrated. Some have a mix of these. Some never come back, so we don't know what was causing their symptoms.

That's why I'm so persistent in telling people to look for other things than herpes. I know it's scary when herpes can be a possibility, and it's frustrating when you don't know, and have to wait for definitive and conclusive testing, but if you only focus on herpes, you are missing months of time when you could be finding out what is actually going on.
I will keep an open mind about other possibilities. That is my hope because I am not looking for a herpes diagnosis - just something - anything - that can explain all of this. Herpes itself is scary, yes, but the consequences to relationships and public perception are more of an issue for me. If I end up getting oral HSV sores out of nowhere some day, that can have a real impact on my career (public appearances, on camera, etc.)., future children if significant other does not have herpes and doesnt want to risk unprotected sex or worse contracts it during pregnancy, and more.   It makes me a little more comfortable knowing that my prodrome symptoms are lasting weeks, come and go, and I have no lesions that I and doctors can see.
Don't worry about any potential repercussions of herpes (which are actually overblown, but that's common in people who don't have herpes) because it's really not likely that you have it.

I have no idea what you do in the public eye and on camera (and certainly don't need to know and you really shouldn't post it here in public), but whatever it is, you wouldn't be the first person to be on camera with a cold sore, nor the last. Everyone has seen a cold sore, and only the most ignorant think anything of it.

A woman with herpes can have a baby. She can be with a partner with herpes and still have a baby. If she is pregnant, the only real concerns are contracting it during the 3rd trimester or delivering while she has an outbreak. There are steps to take to prevent either of those happening.

Life with herpes has changed very little for me. If you were to ever get it, I'd suspect the same for you.  
Thank you again.  So it is only the third trimester for contraction timing that is the concern - not the first or second? I have read that pregnant women can take anti-virals and not harm the baby but I don't know accurate that is.

I hope I do not have herpes and will explore other non-STD diseases.  I did see an infection specialist but the doc did not suggest other tests. I will try again and be insistent on more tests for other things.  
Yes, pregnant women can take antivirals during pregnancy. Obviously, avoiding medications during pregnancy is optimal, but if needed, she can take them. If she has herpes already, she is often put on them during the last weeks of her pregnancy to avoid an outbreak at delivery.

If she is infected during her third trimester, it increases the chances of a premature birth, or that she will have an outbreak at delivery. Obviously, there are ways to prevent both, with either abstaining from activities that can transmit or the male partner taking daily meds.

You're getting a bit ahead of yourself, though, as you don't know that you have it. Keep pushing for other testing and exams, and let us know what you find out. :)
Thank you so much. I'll do that though it may take a while. I noticed a pattern where a lot of people tend to drop away after they get the news, especially if its good news, and I think the internet needs more good stories.

My skin in the genital area has remain the same but I noticed the perineum seems drier that usual today. I also have been using creams that seem to help but I'm not sure its helping to have moisture down there most of the day.   If I can't get a doctor to give me a blood test soon or do swab test with no lesions to test, do you know if those online sites like stdcheck.com are any good? I know they use good labs but I'm not sure about privacy, delivery methods, selling my information/results, etc. Do you know much about those? They seem ok based on some things i have read.
I'm still following your entries here. I am hoping you get some good news to give you peace of mind. To answer your question regarding stdcheck.com, they are good to go. That is who I used to do all my testing which has come back negative as well. I used a prepaid Visa card to keep things discreet. But you do have to use your real name for thew labwork. It's al handled via email so you can use a different email account once you get it all set up.
Yes, I agree about stdcheck. Definitely set up an email just for that, but they are reliable, adhere to HIPAA and confidentiality laws, etc.

Yeah, we get a lot of people who never come back to share the good news, which I wish were different. Maybe you two can be those people. :)

Great idea about using a different email address and a pre-paid card to keep it discreet. I didn't think of that.  I will give it some thought and in the meantime look for appointments with doctors for other tests.
Good luck, and keep us posted. :)
Hey bud. Checking in. I hope you are feeling better and maybe are getting closer to finding an answer.
Checking in again to see how you are doing . Doctors find anything?
Thanks for checking in. I stepped away to try to get some peace of mind for a bit and take care of other things that i neglected for a while. I am awaiting blood test results and am really anxious. I'm still having itching and irritation down there. This new doctor said it didn't look like herpes and put me on some antibiotic creams. No change after a week but i now have redness and itching near my scrotum where the cream is not being applied. I still fear it is HSV and cant get over around the unknowns of how I may have gotten this whatever it is.
I just thought of a few questions. I know Im not confirmed yet but learning more can't hurt anyway.. Assuming this is herpes after all,

Can I expect to be able to exercise? We’re supposed to for health, but sweat, friction and heat seem to make it itch more. Is this always going to be a problem and how do people with herpes exercise if it only flares it up each time?
Can I get nothing on my actual genitals but have rashes only in the anal and surrounding areas?
Can I only have itchy rashes and not bumps or lesions that crust over? Or is that just a matter of time?
Would my lymph nodes have swollen in my groin area if I had genital herpes? Never had that and I check each day.
Is it possible to contract both GSHV1 and 2 at the same time if you’ve never had either before?
Is what I’m going through now likely a long primary OB or a secondary one that is actually resulting in more symptoms?  If this is herpes it is taking a really long time to resolve unless new rashes and itchy things in the same spots are popping up while the original ones heal.

If you had HSV1 or 2 it's well within the detection window now. If your blood tests show negative then move on. Herpes doessn't flare up just out of the blue from working then subside. I have yet to hear of someone that their lymphs swell because of herpes. Herpes sores as you already know form blisters and crust over. You dont have that from what you have been explaining. If I had to guess you either have a fungal infection or have some type of fissure down around your gooch area.
Okay, so first - stop checking your lymph nodes. If they were swollen, they'd hurt and you'd know.

Second, you aren't aware that anything actually happened. What if nothing happened? What if all that happened was a lap dance? You are assuming the worst, but let's assume the best for a minute.

That means you were at risk for nothing.

So then what would be causing these symptoms? Maybe a fungal infection, maybe anxiety (and that isn't meant to minimize your symptoms - anxiety causes REAL symptoms), maybe an anal fissure.

Your tests are all negative. These are not herpes symptoms. Start looking outside STDs for causes as you are limiting yourself. Consider talking to someone about this - it's causing real harm to your mental health. (I say that with compassion, not criticism.)
Thank you both. I probably should have said more instead of replying so fast.   Yes my tests were negative for everything but HSV, which was negative but taken too early. Even if actual sex didn't happen, apparently close skin contact with genital areas can transit HSV and other skin conditions. Not that it makes it any better to accept  it if thats what happened. I am waiting on a bacterial swab result for whatever bacteria is there, STD or not, and HSV blood test results.  I did step away from the internet searching for a while, figured/hoped it wasn't an STD, and just kept checking my body each day for signs of change.  A couple weeks ago I got a sudden itchy armpits and the armpits had a red rash and bumps. No lesions, scabbing or pain. The armpits now still itch sometimes but the redness and dots are gone after a week. No changes in antiperspirant that I could relate to an allergy.  It felt almost the same as my other symptoms below the belt. Thanks for the support.
No STD will give you armpit symptoms. It just doesn't happen. I don't know where you live, and don't need to, but many people are experiencing super hot temps, and it could be from heat, a fungal infection, etc.

If you get STD symptoms, you will notice them - you don't have to keep checking.

Let us know what your results are when you get them.
The results for the latest HSV IgG were negative, which is great news! However, this new doctor warned me that I could need a bit more time due to taking valtrex for 5 days during the first few weeks when my first doc thought I could have an outbreak and wanted to minimize it just in case.  Also, the HSV-1 tests are something only like 60-70% accurate no matter how long a person waits. So, more doubt introduced.

I do still have itchiness every day and sporadic pin-prick feelings that come and go in the boxer short area. I also in the past few days got a rash    
This rash wasn't there when I saw the doctor, so I couldn't ask for a swab.  Since my doctor said I've already tried antibiotic creams, anti-fungals, and powder to keep it dry, just keep an eye on it and try some steroid creams, which I've tried already for general dermatitis. That is not very helpful. Any thoughts on the rash? Different person, but, mine is pretty similar.
No, you only took Valtrex for 5 days. That isn't going to affect your herpes test now. If you'd been on it for a month or longer, or continuously, I'd say yes.

Yes, the IgG can miss about 30% of hsv1 infections. You can always get a Western Blot test if you want. That may be better than doing another IgG test. Your doctor can order it. If he won't, let me know. There are other ways to get it, but if your insurance can pay, it's better. It's not cheap.

Rashes can be so many things - fungal, heat, sweating, allergic reactions, etc. It's so hard to tell.

Hi again. Well my doctor would not order me a western blot nor does he offer PCR swab testing - just culture testing.  He also said mono testing is not warranted given my stated issues. Do you know where I can get a PCR test done on my rashes?  I think I would need one of those since I don't have actual lesions.  When my urethral opening comes into contact with anything like my underwear it is pretty bad.  I'm hoping to get that area (ouch) and my lingering rash swabbed for PCR testing.  I did some reading on WB and it appears that only Terri Warren does that in the entire country at University of Washington? Is that the case? If you have other suggestions I would appreciate it.
Nope, Terri Warren is the only one I know. If you can afford that, talk to her. She's amazing.

She also does PCR swabbing, or she used to, anyway. It's frustrating that you can't get that done from your doctor - who could do it, but won't - but ask Terri if she still does it, or would for you. You can make the video consult appt here - https://westoverheights.com/herpes-video-consultations/

Let me know what happens. I'm sorry it's been so hard for you. It shouldn't have to be.
Hope you are doing well and possibly have found some answers. Keep us posted as to how you are doing.
Thanks for the continued support.  Mild rashes continue and my scrotum is red now.  Latest culture was negative but that's not surprising at this point.  

Lifeslesson have you found any answers?  I started reading the honeycomb site and the number of people that have symptoms and test negatively for years is scary...some end up having it finally detectable years later.   I can't imagine living undiagnosed for years and possibly spreading whatever this is.
What is the honeycomb site? There is no reason to assume that anyone would be undetectable for years, if they are otherwise healthy and have a normal immune system, weren't consistently taking Valtrex, etc.

The honeycomb site was a reference to another website that seems dedicated to herpes.  Its honeycomb.click.  I came across it when doing some reading try to find other possibilities and things keep leading back to herpes.  I agree about it being odd to not be detectable for years but i guess with a 30% chance of false positive with HSV-1 no matter long someone waits to test, that could explain it, no?

One doctor said I could have eczema or something similar but when I asked how some areas could itch for months without a rash and cause painful urination and chills, he looked puzzled and seemed to be thinking - , good question.  I will have to find a way to talk to Terri and hope that she can figure it out for sure.  I am losing hope.
The herpes IgG test has a 30% chance of missing an HSV1 infection, not giving a false positive.

However, you wouldn't be having all these symptoms without ever having had a single outbreak. Scientifically, its not possible.

Get the WB. Put this to bed. If it's not herpes, it will allow you to move on from it.

In the meantime, an often overlooked cause of painful urination is dehydration. Make sure you are drinking plenty of water, especially if you are active.

Yes I quoted the HSV-1 test figures backwards, thanks for the correction.  I now have lip burning in the corners of my mouth out of nowhere and my mouth has a bunch of canker sores, which is odd but not herpes as I understand it.  The corners burning doesn't seem to be in my head and the canker sores are definitely not, but I can deal with those.

I'm trying to get the WB but I have to wait for another few paychecks. This has been a huge financial and mental drain and I'm getting really discouraged.  I'm not sure what to think if a WB comes back negative. That still leaves zero answers but I guess it helps.
It's not zero answers if it comes back negative.

Medicine is often a process of ruling things out to get to the proper diagnosis. It's frustrating and time consuming and costly, but that's often how it works. If it comes back negative, that's one step closer to finding out what it is, and allows you to move on to finding that out.

Canker sores are not herpes - that's correct.

I really hope you find the cause of this soon.
Thanks again. At the risk of sounding obsessed with herpes possibilities, have you heard of someone getting burning on the lips of the mouth months after possible exposure and then have an outbreak? Or is it always an outbreak within the first 2 weeks of initial infection, if you were going to have an OB at all?  Ruling HSV out with a WB is an answer, yes. But until then and with new weird symptoms going on it is really troubling.
I've heard of people getting symptoms years later, but not after testing negative so many times.

Usually, when they get symptoms years later, it's an actual outbreak - not vague symptoms or prodrome symptoms that never turn into an outbreak.

I've never heard of anyone who has had burning lips months after an exposure come back as having herpes. Burning lips is way more indicative of other things. https://www.mayoclinic.org/diseases-conditions/burning-mouth-syndrome/symptoms-causes/syc-20350911

how are you holding  up man. any new news for you? Or are you all good?
Avatar universal
I don't have any answers for you but your post interests me because I am in the same situation as you. tested negative for everything but still have lingering issues exactly like you. will be following up to see if you find an answer. Good luck.
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Thanks. I feels good in a sad way to know i'm not alone.  If you find any answers please let me know. This is taking over my life.
207091 tn?1337709493
So first - it would be helpful to know what your encounter was so we can narrow down what STDs you may have been at risk for. You don't need to go into graphic detail (and we really prefer it if you don't), but did you have oral, vaginal or anal sex? Was it protected or unprotected? Did you give or receive?

In any case, let's rule some things out.

You wouldn't have HPV symptoms this soon, and HPV wouldn't present this way. What did the biopsy results say?

Syphilis would present with a chancre sore, and it's painless. You also wouldn't have the rest of the symptoms you have.

Your HSV results aren't fully accurate, but are about 70% accurate at 5 weeks, give or take. Given that you didn't have either type prior to this encounter, you'd be more likely to have a true primary outbreak, which would be blisters and pain. That's not a hard and fast rule, but since you wouldn't have any hsv antibodies, you wouldn't have anything to help keep the infection in check to start, resulting in a worse first outbreak.

Your chlamydia, trich, gonorrhea, and HIV tests are all conclusively negative.

So this is for sure not HPV, syphilis, chlamydia, trich, gonorrhea or HIV.

Herpes - highly unlikely.

Ureaplasma and mycoplasma - maybe, especially mycoplasma as it's harder to find on tests. However, I'd expect you to have white blood cells in your urine. You don't mention that. Those wouldn't cause all your symptoms, either, unless perhaps you also performed oral sex on someone that you had intercourse with? It's possible to get strep bacteria in your urethra, for example.

Some of your symptoms could be caused by an inflamed prostate, which could be totally unrelated to this encounter. Have you seen a urologist?

Have you had any blood tests run outside of STD testing? Anything to look for signs of infection, blood counts, etc? Maybe even mononucleosis/glandular fever? Don't limit yourself to just STDs. You'll do a disservice to yourself and perhaps prolong your suffering.

What antibiotic did you take that helped?

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Thank you for the detailed response. Regarding my exposure  I was in a sleazy strip club and blacked out after drinking a lot.  I really don't know what happened but I was in there for a while and think I recall getting some lap dances before blacking out. I would like to think nothing happened but I cant rule out anything at this point. I have to assume I may have given and/or received oral and had vaginal sex with or without protection and anal sex may have been possible but I doubt it....Not an interest for me but who knows.  

The HPV biopsy results came back as benign and the doc said nothing to worry about- it's not HPV. That's all i really got out of her.  The urea and mycoplasma results came back negative but thats all I know.

I have seen 2 urologists. One did a prostate exam and said I was fine and I had nothing to worry about, though I really had no notable symptoms at that time. The doc said the prostate felt normal. The next urologist that I saw a few weeks later did a pretty thorough genital exam and looked my previous test results, said I was fine, no STDs, and that an anti-itch cream may help.

I also had a CBC done. That came back all normal as well.  I took Cipro right after the first issues with peeing came up shortly after the exposure and then Doxy about 3 weeks later when I still had some odd sensations (not pain) when peeing and really wanted to rule out a stubborn prostate or urethra infection. No bacterial test results ever showed any infections at any time.

I did not get tested for mono and glandular fever - should I? Are there reliable tests for that?  It seems like herpes is still a possibility.  Would another test for mono, glandular fever, and herpes be a good idea?  How reliable would blood results be at 2 months or so if I'm having itching?  Thank you for helping me though this.
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