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HerpesOrNot

Herpes or not? So confused.

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HerpesOrNot

Hi all,

 

I’m really confused. I don’t know if I have herpes or not.  Here is a summary of my (32/m) history. I’m trying to keep it short but there is a lot to describe.

Day zero: Have possible sexual contact with new woman (I was very intoxicated; no idea and can’t contact person)

 1 week later: Sudden bad dysuria.  Feels much better by very next day.  Go on antibiotic for possible infection, pending urine test results.

Weeks 2/3: Flu-like symptoms for 3 days. Sore throat, dry mouth and eyes. No lesions or rashes. Lingering dysuria. Stop antibiotic - negative for bacterial infection and trich infection. Start and finish 5 days Valtrex in case of possible herpes infection.  Days later, test results come in - HIV negative and HSV 1& 2 IgG negative.

 Week 4:  Normal blood workup and negative for Hep B and C.   

 Week 5-6: All symptoms gone but mild dysuria lingers.  HIV negative and HSV 1& 2 IgG negative. Normal STD bacteria and Mycoplasms and Ureaplamsa tests are all negative.  HPV skin sample test negative.

 Weeks 7/ 8: Sudden itchy anal area with read rash. No lesions of bumps. Entire groin area starts to itch but no redness yet, but do have skin around groin that feels that feels hot and prickly – but not what I would say is tingling. 

 Week 10-11: Itchiness and redness gone in anal area but itchiness continues in groin. Antibiotic creams, antifungal, and steroid creams for nearly 2 weeks have no impact in any spot. Immune system and time seem to be only helpful thing.   Get a sensitive penis head/glans and mild stinging/discomfort with ejaculation. Penis skin irrigated in general for a day or two after masturbation.

Week 12: HIV and HSV 1 and 2 IgG negative.  Symptoms dying down. Start to get hopeful.


Week 13: Itchiness in anal and groin region returns quickly. Sudden bad dysuria again, which goes away in 2 days, like the earliest symptoms I had ever felt.  This time, groin breaks out in red rash where leg meets main body.  No lesions or blisters, just itchy rash with red bumps/spots. I’m told to use creams again and since the rashes are not herpes according to the doctor, they can’t (well, won’t) be swabbed for HSV test.  I used the creams on one area only to compare to other areas with the rash and the creams do nothing.

 

So, I’m being told nothing is wrong by many different doctors but that is clearly not right. Due to the confusing information about HSV and the reliability of blood tests, I’m coming here hoping someone can relate and get an opinion on whether you think it could still be herpes and what I should do next. It seems to be the only thing left that I can’t completely rule out. Thanks for your help.

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WilsoInAus

@HerpesOrNot your testing is conclusive that you are clear of HSV 1/2.

This is consistent with your symptoms indicating issues other than herpes.

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HerpesOrNot

Thanks very much for the response.  Can you tell me a bit more about why you think I'm clear of herpes?  Based on the reading I've done, I've learned that HSV-1 blood tests miss like 30% of cases and like 8% of HSV-2-  even at 12 or more weeks.  Could that still not be an issue with me? I'm not trying to convince myself I have herpes, but the symptoms seem to align with herpes, although not the typical case, and not much else at this point. The itching is sometimes like my skin is crawling, not a typical surface-level rash, which makes me think it is related to nerves where herpes takes root.

Are there other tests I should take or some other similar infection you may typically suggest people look into with their doctors that report similar symptoms with no apparent answers? 

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WilsoInAus

Hey @HerpesOrNot a few things to work through here.

Blood tests are false negative mostly as a result of sero-reversion when someone has had the virus for say 20 years or longer. The test is far more accurate in the first few years post infection.

The next issue is your symptoms and their timing. If you are going to have flu like symptoms, they happen at the time of the toxic shock of your immune system kicking in within days of infection, not weeks later.

Herpes does what it does best, cause lesions. Upon infection any rashes that form will have blistery lesions associated with them.

There is also the chance that you didn’t actually have sexual with this person, unprotected or that she has herpes.

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HerpesOrNot

@WilsoInAus

Thanks for the note on the blood test accuracy.  I've read a lot about how they are and are not accurate so it's hard to know what is fact vs fiction. 

Regarding the timing of the flu symptoms, I should have been more clear: it happened in week 2, about 9-10 days after potential exposure. But at that time, I had no itching, rashes, or anything in my genital area. 

I've also had floaters develop in an eye, back acne or pimple-like bumps that are not clustered but stay along my lat muscles (which looks like where herpes/shingles likes to appear to older people), and a few other things. 

Would you recommend a western blot or some other type of test at this point? 

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WilsoInAus

@HerpesOrNot the symptoms you describe have nothing to do with herpes.

The 12 week IgG test is likely to be conclusive for you.

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HerpesOrNot

@WilsoInAus I hope they are conclusive. I'm just not sold on the results yet, given the symptoms I'm having and the lack of other explanations.  Based on what I've read on this forum since I'm new here, that seems to be a common theme with much disagreement.  I feel like I've exhausted nearly every medicine and test and have absolutely no answers. 

Does anyone else have any suggestions, even off-the-wall ones?  I'm getting desperate.

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WilsoInAus

But @HerpesOrNot just because you can’t find what it is that is causing your symptoms doesn’t mean that any one random cause is some default cause.

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HerpesOrNot
On 8/13/2019 at 4:14 PM, WilsoInAus said:

But @HerpesOrNot just because you can’t find what it is that is causing your symptoms doesn’t mean that any one random cause is some default cause.

@WilsoInAus that's true, But everything said here sounds so similar to my issues. I have no answers and several people report a year later that it was, finally, proven that they had herpes but took a very long time to test positive.

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LightafterDarkness

@HerpesOrNot consider a western blot test if you still doubt though I would say your symptoms dont just come out of the blue.

 

At the end of the day nobody here is a doctor so perhaps get a pov from Terri Warren who has 25+ years of experience in this space. Search the forum to see if someone has described a similar experience or directly reach out to her and get her take

https://westoverheights.com/herpes-questions/

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HerpesOrNot
On 8/15/2019 at 3:02 PM, LightafterDarkness said:

@HerpesOrNot consider a western blot test if you still doubt though I would say your symptoms dont just come out of the blue.

 

At the end of the day nobody here is a doctor so perhaps get a pov from Terri Warren who has 25+ years of experience in this space. Search the forum to see if someone has described a similar experience or directly reach out to her and get her take

https://westoverheights.com/herpes-questions/

Thanks for the helpful information. I guess I will have to go that route.  I see why so many people come to these forums. The uncertainty with HSV diagnosis is confusing and rough.

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