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Atypical Symptoms. Let’s compile a list.


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On ‎12‎/‎10‎/‎2017 at 4:00 PM, Jay2255 said:

Tested negative IGG at 2 and 3 weeks but post exposure. Awaiting IGG and IGM results from 4 weeks post exposure.

symptoms in the weeks following exposure and still on and off fir some:

 

1. flu like with feverish, chills, fatigue.

2. Nausea.

3. Swollen lymph nodes (groin for a 1-2 days, neck for 2-3 weeks on and off).

4. Weight loss of ~4kg.

5. Urethra discomfort for several days,

6. Penis surface tingling and skin seems different.

7. Tingling feet and hands.

8. Burning/tingling feeling from under scrotum to rectum (even inside to prostate).

9. Hands and legs feel weak.

10. Dizzy and strange headaches at times where I feel not normal, as though I’d take drugs or something.

11. Inside ascending colon having pain there, never previously,

12. Only visible outbreak was a single zit (no cluster of bumps) on my upper thigh 1week post exposure. The doctor looked at it and said “not hsv”. In retrospect I should have demanded the swab for piece of mind instead of now relying on unreliable blood tests.

13. Tingling face and around eyes.

14. Waking up every night around 3-5am due to nausea or other.

15. Had geographic tongue for several days during the first 2 weeks.

16. Feel constipated and passing gas without controlling it (so soon after exposure?).

17. Skin on face feels different.

18. Hand/finger dexterity or motor skills affected.

19. Strange (metallic?) taste in my mouth. How can that b for GHSV?

20. 

I have been told by several people online that this is in no way herpes. Also 3 doctors said the same or they didn’t know because no obvious blisters. Spoke to another doctor on the phone today who said no blister means not herpes and he’s never seen an case without blisters.

My assumption is the outbreak is intermal (during urethra pain in the beginning).

Needless to say this is infinitely frustrating, discomforting and depressing, I spend hours a day looking at info and for news of possible cures and therapies.

I’m not yet diagnosed but feel I should be on AV’s because if I do have it the virus must be replicating and spreading.

The seeming lack of knowledge on the part of doctors and paid online experts is troubling. The way they consider an innocuous disease and nothing to be concerned with is also very troubling.

Reqd the hell these people are going through:

https://www.mdjunction.com/forums/genital-herpes-discussions/general-support/10786256-severe-symptoms-genital-herpes

 

Did you ever experience something like meningitis? Before or during your first outbreak? I experienced something like that and I almost ended up in the hospital. Then a couple weeks later I had a internal outbreak, and then a week after that I found a small cluster by my butt.

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Apart from this virus obviously affecting our CNS do you think it could also be inducing some sort of chronic auto immune response.? That would explain the differences and parallels in our symptoms.  

No, this is definitely herpes. Matches symptoms of other suffers on this board. None of this shit happened to me until unprotected sex.  Wilson is a moron who leads users to believe incorrect inf

I am 1 year and 3 weeks post exposure i have spent thousands on doctors with no help, these are my symptoms im left with... 1. Debilitating peripheral neuropathy from my low back to my feet,(horr

Meningitis like symptoms for the first time before outbreak.

"Migraines", pressure in eyes.

Very cold, chills

Nerve pain, burning in legs, burning in vagina.

Shoulder and neck pain.

Back pain

Sometimes I can feel the virus moving up and down my spine.

Blurry vision, sensitive to light.

Tingling and numbness in legs.

Balance is off.

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9 hours ago, Becca24 said:

Meningitis like symptoms for the first time before outbreak.

"Migraines", pressure in eyes.

Very cold, chills

Nerve pain, burning in legs, burning in vagina.

Shoulder and neck pain.

Back pain

Sometimes I can feel the virus moving up and down my spine.

Blurry vision, sensitive to light.

Tingling and numbness in legs.

Balance is off.

Please disregard. This is from a well known fake/troll.

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Always IGG, WB, and culture negative after 2.5 years and dozens of tests. Can't get PCR in my area since the local lab all doctors use doesn't offer an HSV PCR swab test for men. Would love to order PCR swab kits from Quest and/or Labcorp but haven't had any luck with doing so or convincing doctors to order supplies. Apparently the incredibly insensitive and dated culture test is good enough for everyone in my area.

Symptoms are daily but everything worsens when I have an OB, which typically manifest as paper cuts these days. My early OBs were lesions/erosions as well, but none ever looked like classic herpes blisters. The OBs are always in the same locations.

Daily atypical symptom list:

Burning and stinging inside urethra with dysuria and urethritis during flare-ups.

Aching and pain in meatus.

Burning/itching/stinging anus with sharp stabbing pains.

Genital itching especially on scrotum, which was the site of exactly one OB showing up as hard white pustules.

Muscle pains and aches in gluteals, quads, hamstrings and I suspect sometimes in upper body locations.

Aching pains in knees, hips, and feet joints.

Aching and shooting pains in tailbone and lower back.

Sharp stabs/shocks in feet and hands that can be breathtaking in intensity.

Intense fatigue, especially during OBs/flares.

There are other symptoms but those are the main ones. Symptoms have gradually become more constant and widespread over time. They get better on higher doses of AVs but I am never anywhere near my old self no matter how much I adhere to the daily restrictions imposed by this virus. For example, if I drink of few beers I spend the next week in incredible discomfort with a wide variety of OB as well as systemic symptoms from this "skin disease."

I csn empathize with GPs being clueless about HSV since they can only focus on the averages and typical presentations.

What I find incredibly inexcusable is the attitudes of the "experts" including the big names you hear about on these forums as well as the infectious disease specialists. They refuse to acknowledge even the most slap-in-the face obvious atypical HSV symptoms like neuropathy and neuralgia, etc. I am forced to conclude this is a result of needing to maintain psychological consistency by reinforcing their "world is flat" doctrine. It's far easier to label patients as psychosomatic, etc. than to admit you the "expert" have been dead wrong for decades. If they can't see the symptom, then clearly it is in the patient's head!

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45 minutes ago, Dying2Live said:

Always IGG, WB, and culture negative after 2.5 years and dozens of tests. Can't get PCR in my area since the local lab all doctors use doesn't offer an HSV PCR swab test for men. Would love to order PCR swab kits from Quest and/or Labcorp but haven't had any luck with doing so or convincing doctors to order supplies. Apparently the incredibly insensitive and dated culture test is good enough for everyone in my area.

Perhaps you don't have HSV afterall

At least this is what your testing results, specialists' advice and atypical symptoms (meaning symptoms not usually associated with HSV) would in all probability suggest.

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On 4/3/2018 at 10:20 PM, HC-Support-Team said:

Perhaps you don't have HSV afterall

At least this is what your testing results, specialists' advice and atypical symptoms (meaning symptoms not usually associated with HSV) would in all probability suggest.

Yes, and I believed I didn't have it for a long time. However, as I kept a detailed medical journal and experimented with AV therapy and HSV triggers in addition to doing thousands of hours of research on the actual HSV tests and finding a quite a number of confirmed HSV cases that manifest without seroconversion or seroreversion (at least according to the antibody tests), I am forced to conclude via a heavily weighted balance of probability that the chronic, sexually acquired infection that manifests recurrent genital lesions in the same locations and has afflicted me in a progressively more systemic fashion over the course of time is in fact a herpes virus. I would bet what's left of my life on it. I expect to have PCR proof once I can find a way to get a lab/doctor to join us here in the year 2018.

By the way, I agree that many if not all of my atypical symptoms are unlikely to be HSV spreading to those locations, though it would NOT surprise me given the incredibly aggressive behavior relative to the apparent incompetence of my immune system and the fact that those other symptoms peak during OBs. However, there are numerous examples of disease progression with symptoms that could largely be attributed to widespread inflammation as the immune system reacts inelegantly. Think of it like carpet bombing the Taliban in their caves vs. using surgical strike teams of ground forces. I believe my immune system is behaving more analogously to the former.

Also, there is an FDA phase 2 trial of a drug combination consisting of famciclovr and celexocib that has demostrated very promising outcomes for fibromyalgia patients. Needless to say, I see some interesting parallels between my current symptoms and fibromyalgia symptoms. Just one of many pieces of compelling evidence to my point above, and an example of the real human progress that can be made to reduce human suffering when "experts" stop labeling patients as psychosomatic and are willing to fully acknowledge the full destructive potential of chronic viruses (some of which, like HSV, are incredibly well engineered to evade the immune system) under certain conditions (immunosuppression, genetic vulnerability, physical stressors, etc.) and apply that knowledge toward developing new treatments.

 

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16 hours ago, rush82 said:

You can order swab kits here. I called and they said they use PCR.

 

https://www.selfcollect.com/store/products/herpes-virus-i-ii

 

THANK YOU! I literally cannot thank you enough for this post. I have been scouring the internet high and low and calling doctors offices and labs looking for a way to get an actual DNA swab test for the last 2 years. To say it has been infuriating against the backdrop of worsening symptoms doesn't even begin to describe it.

This is the perfect solution since I'll be able to provoke a more severe OB in order to hopefully attract enough virus to the surface, and then collect a swab or swabs without having to hope and pray I'd be able to schedule and attend a doctor appointment in the viable testing time frame. Logistics has also been an enormous obstacle to any direct testing effort for me, so I'm thrilled not to have to deal with that on top of everything else.

By the way, until now I had only found ways to access the almost entirely pointless PCR blood test. My deduction after reading a number of conflicting reports on the appropriate usage of PCR blood tests is that if you really truly suspect a positive on one of them you're probably going to be lying in the hospital already...

Anyway, ordering this now!

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7 hours ago, Dying2Live said:

THANK YOU! I literally cannot thank you enough for this post. I have been scouring the internet high and low and calling doctors offices and labs looking for a way to get an actual DNA swab test for the last 2 years. To say it has been infuriating against the backdrop of worsening symptoms doesn't even begin to describe it.

This is the perfect solution since I'll be able to provoke a more severe OB in order to hopefully attract enough virus to the surface, and then collect a swab or swabs without having to hope and pray I'd be able to schedule and attend a doctor appointment in the viable testing time frame. Logistics has also been an enormous obstacle to any direct testing effort for me, so I'm thrilled not to have to deal with that on top of everything else.

By the way, until now I had only found ways to access the almost entirely pointless PCR blood test. My deduction after reading a number of conflicting reports on the appropriate usage of PCR blood tests is that if you really truly suspect a positive on one of them you're probably going to be lying in the hospital already...

Anyway, ordering this now!

If you would get a pcr swab what would you have swabbed?

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On 4/5/2018 at 10:04 AM, Chris Taylor said:

If you would get a pcr swab what would you have swabbed?

The epicenters of my symptoms are inside my urethra and in my perineum/anal region. I will swab the latter because it is far less uncomfortable and it's much more likely I can gather some exudate from the sores/cuts that tend to occur there. Now all I need is a bottle of vodka and a bottle of famciclovir. Too bad the pleasure is not remotely close to being worth the pain.

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On 12/11/2017 at 11:49 PM, IcantThinkofaName said:

43

Few drs know anything about HSv nor do they care to. My PCP won't even talk to me about it. Not his dept I guess. He saw my test results and said nothing I guess because they were ordered by my Gyno, even though I was in his office and he was looking at my tests and overall health that day. You would think he ask or  be concerned about my health. Guess again. he didn't say a word. too embarrassing I guess. 

My gyno said these symptoms were not herpes,and that i was being hypersensitve- its all in my head. I tried to tell him I'm not.

I gave up trying to discuss  these symptoms anymore (or anything else ) with drs.  There is nothing they can do anyway about HSV. They can only hand out sripts for antivirals and antidepressants.They really don't give a shit or want to listen anyway.

I wouldn't worry about the tinnitus, i personally doubt  that is from HSV. I am sure mine is from hearing loss from power tool and concerts I just added it because everyone else did : From wikipedia:

Tinnitus is not a disease but a symptom that can result from a number of underlying causes.[2] One of the most common causes is noise-induced hearing loss.[2] Other causes include ear infections, disease of the heart or blood vessels, Ménière's disease, brain tumors, emotional stress, exposure to certain medications, a previous head injury, and earwax.[2][4] It is more common in those with depression.[3]

 

I find the drs have no clue. I also felt something was wrong. Consistently aaked them but i had no visable symptoms and now ive finally been diagnozed as i was positive. The also gave me anti and i asked for a referral to a psych. They are pretfy useless seeing its life changing news. 

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mconcerned1986
On 12/10/2017 at 9:23 AM, fallin said:

Our symptoms seem so different but are clearly HSV related. I wanted to share my symptoms. Wanted to know others’ as well. Please don’t hijack this thread with statements like “this isn’t herpes.”

HSV2 PCR swab positive. All blood test negative including western blot for 2 yrs.  

Genital burning without OBs constant  

4 extremity numbness and tingling with pain 

neck pain extending to chest 

Tinnitus 

insomnia from pain 

Occasional rashes that last only a day or two

generalized itching  

active bowels with bowel sounds

 

Please share your atypical symptoms for those who suffer badly  Thanks  

 

Did you have an unprotected sexual encounter or a protected one? I was struggling with the same issues. Where did u get the swab when there were no our breaks pls advise. 

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On 12/11/2017 at 4:01 AM, IcantThinkofaName said:

GHSV2 positive: swab and IGG. I've had H for 1 year now.

I have the classic Obs almost monthly, always on the LEFT side of my genital/butt region- always in a different place

but,.I also get this crap all month in between on and off:

1.Genital burning /itching/ strange sensations/ pinching or stabbing , I have a very sensitive vagina now, I can barely wear underwear with out it rubbing me and causing pain. I have even went up in sizes to try to alleviate. Any rubbing or injury  there, even from underwear,  will cause an OB (never had  this crap before infection, had itching if it was yeast infection but that itching feels different)

2.Anal itching and pain or pinching (never had before infection)

3.bad hip pain  and leg pain (left side)- like nerve damage and  numbness so bad I cannot sleep sometimes, (never had before infection)

4.pins and needles tingling in feet and leg  ( i have had that feeling before in the past before infection  but now its more so on left side now )

 5.Tinnitus ( i have had this before in the past before infection, some say its low magnesium or other mineral)

6. A very weird Left arm numbness and sunburn feeling rash for days with no visable rash/marks -before I got an OB  (never had before infection) and sometimes I get that on back of thigh too

7. generalized itching  and rashes in other places on body, like stomach, arms  ( i have had this before in the past )

8. I have really bad large pimple now on my face, like big huge red zits that keep recurring all month. I've not  had like this since I was 16 and I don't think they were like this then.

9. vagina skin is rougher and more textured than before ( could it be from just aging?? i don't know anymore)

10 one time , right before an OB, I got a very sudden sharp pain in my left hip so bad that I almost fell to the ground.

This is NOT all in my head. Its real physical pain and sensations  that I try to ignore but sometimes its just not possible

My BF says I almost always think I'm getting an outbreak. Well, thats because I'm almost always feeling something.

I have the exact same problem with zits. I am HSV1 positive 

 

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Sore groin, sore armpits, metallic mouth taste, dry eyes, small red spots on face that itch daily, itching genitals, red blotchy skin on penis head, painful acne on forehead, neck, and back, sore finger joint, gurgling sound in right ear, pain in nostrils, headaches, red dots on groin, sore knee, burning in anus, burning mouth, burning buttchecks, constant chapped lip, fordyce on penis and lip

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1 hour ago, blurneworder said:

Sore groin, sore armpits, metallic mouth taste, dry eyes, small red spots on face that itch daily, itching genitals, red blotchy skin on penis head, painful acne on forehead, neck, and back, sore finger joint, gurgling sound in right ear, pain in nostrils, headaches, red dots on groin, sore knee, burning in anus, burning mouth, burning buttchecks, constant chapped lip, fordyce on penis and lip

And not one of these is due to herpes.

Pull yourself back from the abyss. Join the world far from the bewildered.

It is your destiny...

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7 hours ago, WilsoInAus said:

And not one of these is due to herpes.

Pull yourself back from the abyss. Join the world far from the bewildered.

It is your destiny...

You are wrong. As much as you read these forums and the experiences of others, you sure are a moron.

Plenty of people on these forums have HSV and share my symptoms. 

Wilson I know you don’t have HSV, but I think you suffer from brain damage. 

It’s sad that you embarrass yourself day after day.  

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mconcerned1986

Bro it’s okay.. just leave it. He might be trying to assure us to be peaceful which I get. It’s all good, if this is not herpes then it shoulD be something else what is that shit then? 

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1 hour ago, mconcerned1986 said:

Bro it’s okay.. just leave it. He might be trying to assure us to be peaceful which I get. It’s all good, if this is not herpes then it shoulD be something else what is that shit then? 

No, this is definitely herpes. Matches symptoms of other suffers on this board. None of this shit happened to me until unprotected sex. 

Wilson is a moron who leads users to believe incorrect information. 

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2 hours ago, blurneworder said:

No, this is definitely herpes. Matches symptoms of other suffers on this board. None of this shit happened to me until unprotected sex. 

Wilson is a moron who leads users to believe incorrect information. 

Who? Who does it match? 

You keep saying this, yet I have never seen any one with that list of symptoms actually have herpes and be the cause of that list.

The person you had unprotected sex with doesn’t have herpes as verified through testing months after you were with them.

Still, we believe what we believe.

The truth is out there!

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8 hours ago, WilsoInAus said:

Who? Who does it match? 

You keep saying this, yet I have never seen any one with that list of symptoms actually have herpes and be the cause of that list.

The person you had unprotected sex with doesn’t have herpes as verified through testing months after you were with them.

Still, we believe what we believe.

The truth is out there!

Again, you are a moron. You read all of these threads and still haven’t learned a thing. I’m not going to hold your hand, look through the forums on your own and try to learn something.

The person I had sex with will not tell me what subsequent tests hav shown. Apparently you’ve interviews her because you keep telling me she doesn’t have herpes. Sounds like something a moron says.

My list of symptoms doesn’t have to match everyone else on here. Once again, you are a moron and can’t see the similarities between me and others with my symptoms.

You really should learn more about this virus. You just don’t know enough yet.

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@blurneworder you are trying to twist things as always.

I said you have no evidence you have genital herpes. We are still trying to find where I said you didn’t have herpes.

You don’t believe in blood tests anyway so what does your result matter? Are they accurate or not?  Make a decision man!

You posted several times that she tested negative. Why lie now?

I know enough about the virus to be clear that you do not have genital herpes nor are any of your symptoms caused by herpes.

im sorry to say but the reality of the situation.

But this doesn’t matter, everyone on this website actually with herpes and genital herpes knows that.

This is about you and when you’re ready reality.

its hard, but it can be done.

It is your destiny ...

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10 hours ago, WilsoInAus said:

@blurneworder you are trying to twist things as always.

I said you have no evidence you have genital herpes. We are still trying to find where I said you didn’t have herpes..

October 29, 2018

“No more testing do you need. You do not have herpes.”

November 16, 2018

“Absolutely none of this is suggestive of herpes, at least that possible cause has been eliminated”

December 27, 2018

“You don’t have herpes”

February 26, 2019

“The truth is you don’t have herpes, that’s the support you need. The truth is all that matters.

April 10, 2019

“You don’t have herpes.

 

I can find plenty more times where you tell me I don’t have herpes, but you don’t want me to open that floodgate and show this forum why again you are a moron.

Had I listened to the multiple times you told me I didn’t have herpes, I would have infected others.

You are a moron.

 

@Quest @jmherped @viralfrog @Mikeike3

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  • Posts

    • WilsoInAus
      @CHT my comments regarding your race and socio-economic status are not rude, sounds like they were accurate. I just want you to be aware that there is unconscious bias in your comments based on your perspective. Yes I stand by my comments that the US healthcare system is shameful. If that loses integrity in your eyes, then that is where you sit relative to the healthcare system and my public health philosophies. There is nothing shameful about expressing ones philosophies. Have I been antagonistic in the way I have expressed these things. Yes I have and I apologise for that. I think overall I was pretty shocked that you believed that the majority of infections were asymptomatic for the receiver. Your personal experience was quite the opposite and I admit I was perplexed why you didn't share your personal experience with someone who really wanted to hear a story of a true genital infection.
    • CHT
      "talking up the chances of infection"  What? Wilson, you are now making up dialogue that never occurred.  He asked about testing and when symptoms might manifest.... I answered his questions and then asked why he felt he may be infected?  You need to go back and read over the actual messages.... never once did I "talk up the chance of infection."  You have done a poor job of reading between the lines of my messages back to "Dumbass."  I suggested he may want to meet with a doctor to discuss his situation with the goal of alleviating his concerns about infection particularly since the little bit of information he provided would likely indicate he had a low chance of infection in my opinion.... hearing it from a medical professional, especially with testing, would help confirm this and give him peace of mind.   Wilson, what really surprises me is your last paragraph.  I have read many of your posts on this website over the last couple of years and have always held your opinions in high regard.... always well informed and you never resort to petty insults and bullying even when challenged.  However, your snide speculations about my race and socio-economic status are rude, unnecessary and clearly antagonistic.  Further, your remarks about the healthcare system in the US were clearly hostile, not to mention showing a gross ignorance of how healthcare works here.  Your statements were shameful.... lost integrity.    
    • WilsoInAus
      I'm sorry @CHT you did not give the full information. The chances are not high they will not have recognisable symptoms. And if they do not have recognisable symptoms, then what is the point of going to a doctor for a swab? It is your obligation to tell people their chances and they how arrive at the correct diagnosis through available tests. Are you aware of the psychological harm that you have probably caused by talking up the chance of infection. You didn't say that there would be 50% plus chance that the person did not have HSV-2 in the first place and that the episode was less than a 1 in 1,000 chance. What happened to those odds? What role do they play when you are interpreting symptoms or their absence? In life, you support someone by saying what they NEED to hear and not WHAT you know or want to say. Further, let me guess, white middle class? The bulk of the population cannot afford nor are granted access to health care in your country. Must be nice to be able to afford a clinical evaluation, but let's spare a though for those who can't afford that. All they can do is go with the odds and they are perfectly entitled to do that in their circumstances
    • ZealousidealAide7
      I know that it is not contagious, if that helps 
    • CHT
      "Simply because people think they are asymptomatic doesn't mean they are. When they go to a doctor for education and consciously on the lookout, there is a very high probability if they are infected they will find something." Absolutely true, no argument on the study you reference.  I am also aware of the clinical studies that have demonstrated that those who self-reported as "asymptomatic" when evaluated by medical professionals are made aware that they they aren't actually asymptomatic.  However, going back to the original question at hand as to whether those who are infected demonstrate recognizable symptoms, the answer is still (as per CDC, WHO, and other reliable sources):"Most individuals infected with HSV are asymptomatic or have very mild symptoms that go unnoticed or are mistaken for another skin condition"   So, when someone comes to this site seeking advice and help when they suspect they are newly infected, we have an obligation to point out, as I did in this situation, that the chances are high that they may not have symptoms, or recognize any symptoms,  so, waiting to observe the classic symptoms (that they will no doubt look up online and find all sorts of photos showing "this is what a herpes outbreak looks like") will likely not detect those symptoms.... but, it does not mean they do not have the virus.  Obviously, most infected individuals won't have the benefit of weeks of clinical observation/testing to help them identify easily misidentified (or asymptomatic) symptoms..... these infected individuals will then move along thinking "I dodged the herpes bullet" and quite easily and unknowingly pass the virus on to others.  This occurs frequently when a person who does test positive confronts the person they believe gave them the "gift" and this gift-giver" vehemently denies having the virus since they have never had symptoms of herpes..... (which, again, is very likely as the CDC and WHO clearly point out).  Again, in the unlikely event this person were to enter into a clinical evaluation (as you referenced above), including testing/swabbing, they may find out otherwise.  This fact is one of the main reasons the virus continues to get passed along to others and the percentages of people becoming infected (particularly younger aged population) continues to increase. 
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