8 Week Testing Accuracy

[user_123454321]

Background:
Married ~15 yrs, both faithful.2-mo ago went to a bachelor party, drank to excess, unprotected oral & brief sex. Never tested for HSV, never had symptoms & no one in family had cold sores. Wife doesn’t get cold sores. No sex with wife in 2 mo and understandably questioning this.
Symptoms:
3-7 days after exposure extreme urinary urge and penile tenderness on shaft at glans. Extended to discomfort in testicles and back of legs at lower butt area. No tingling, thighs/butt do feel hot/rashy/prickly, nothing visible. No visible lesions of any sort, rash symptoms did show up about 2 wks after exposure in the entire butt crack area, no lesions. Urinary issues are gone, discomfort in butt area persists as does tenderness on penis at glans. Neuropothy type discomfort in lower back and butt area, which I never had before persists.
Medical:
Day 3: UC with penis pain and urinary urgency. STI urine test (clean), diagnosed friction burn. No herpes visual symptoms.7 day doxycycline in case of UTI.
Day 7: IGG.HSV1 =2.55. HSV2 =< 0.90. Urinary urgency is intense.Tenderness in penis and testical/groin discomfort.
3 wk: PCD. Pee frequency, Penile pain and rash in butt crack & discomfort on buttocks. STI/Trichomonas. negative, no visual sign of herpes or lesions. Felt rash was chafing and urine was mental.
3.5 wk: IGG.HSV1 =2.58. HSV2 =< 0.90
5 wk: Urologist complaining of pee frequency, penile tenderness, butt crack area discomfort. Urine PCR test, clean.Cystoscopy clean. No sign of herpes/warts, didn’t feel symptoms were herpes. Felt symptoms were mental.
6 weeks: UC with rash on thigh/groin & butt crack. Yeast related, two doses of Fluconazole.Cleared up the thigh,butt still red.
6.5 wk: IGG.HSV1 =2.40. HSV2 =<0.90

?’s:
1)Can I consider 8 week IGG test conclusive
2)Would HSV1 of ~2.50 more likely indicate false positive,recent infection,or >than 15 years
3)Would HSV1 of 2.55 show up 7 days after exposure
4)Do any of these symptoms make you think herpes is likely cause

[user_123454321]

In addition to previous,here is current status, and consolidated questions.
– I am at 8.5 wk point. I took another IGG test this week, no results yet.

As a reminder, the very first symptom was penile pain (mild pain, more like discomfort) and redness, diagnosed as friction burn. Followed closely by urinary frequency which turned into an extreme urgency within the first week of exposure. Urgency was so bad I was peeing 4-7 times an hour, with the feeling of going to pee myself right after peeing, but not actually having urine. I never had any pain when urinating. That urgency resolved, but a pee frequency did persist for 3 or 4 weeks.

The most consistent symptoms overall since exposure have been 1) the rash i described in my butt crack/anus/buttock area (without any lesions), 2) tenderness on left side of shaft at glans & 3) the “neuropathy” type symptoms I described. This is what I described to the urologist “Discomfort persists which fluctuates between my butt area, penis around the tip/left shaft at glans and perineum area. I would describe the discomfort as a dull pain and skin dryness when it is in the perineum area, more like hot/rash feeling when it feels around the butt/anus and more like a pricking type sensation when it is on the penis. I never feel it in two spots at the same time. I also seem to notice this most when i’m sitting down” I call this all out, to give a full history and it seems consistent with other comments you’ve received in the past which you may have more context on.

Questions:
1)Can I consider 8 wk IGG test conclusive?
2)If no, do I need to wait to wk 12?
2)Would HSV1 of ~2.50 more likely indicate false positive,recent infection,or >than 15 years?
3)Would HSV1 of 2.55 show up 7 days after exposure?
4)Do any of these symptoms make you think HSV1/2 is the likely cause?
5)anyway to confirm genital or oral HSV1 w/o lesions?
6)Has anyone successfully gotten answers to their “neuropathy” symptoms they believe are tied to HSV you can share?

[Terri Warren]

Questions:
1)Can I consider 8 wk IGG test conclusive?
It probably is about as good as it is going to get, yes.
2)If no, do I need to wait to wk 12?
Given the circumstances, that might be a good idea. Don’t take any antivirals.

2)Would HSV1 of ~2.50 more likely indicate false positive,recent infection,or >than 15 years?
It isn’t possible to say, but if goes way up at 12 weeks, it could represent a new infection.

3)Would HSV1 of 2.55 show up 7 days after exposure?
not likely, no

4)Do any of these symptoms make you think HSV1/2 is the likely cause?
not any of your symptoms, no.

5)anyway to confirm genital or oral HSV1 w/o lesions?
Is there a question there?

6)Has anyone successfully gotten answers to their “neuropathy” symptoms they believe are tied to HSV you can share?
Some people have pelvic floor issues or some have disc issues in the back.

Terri

[user_123454321]

Thank you for your response.

The 8.5 week IGG results were consistent: HSV1= 2.48. HSV2=negative. in case that changes any of your opinions.

Folllowing up to your response:
5)anyway to confirm genital or oral HSV1 w/o lesions?
Is there a question there?

Sorry for the confusion. My question is this:
Let’s say that HSV1 is confirmed. Is there anyway to test on an ongoing basis (absent any obvious lesions) for viral shedding to try to determine location. For example, are there any at home covid like swabs you can buy and test frequently to try to get a positive result at some point. If money wasn’t the primary concern, but instead protecting my wife is (i realize the contradiction in that statement), how could i go about doing that sort of testing ?

[Terri Warren]

You can obtain HSV PCR swabs from a company called 24/7 labs and do them at home.

Terri

[user_123454321]

Thank you, Terri. I did follow up with 24/7. I appreciate that information.

I really only have three more questions and then hopefully we can discuss more directly off the forum with a consultation in January.

1) I definitely will do a western blot in the future. Have you worked with any SF Bay Area labs in recent years? I don’t want to navigate finding a lab myself.

2) Back to my COVID mindset. We know the main symptoms were respiratory, but some patients would experience other things like gastrointestinal issues. The CDC or others would put rough percentages on it, and i think reasonable ppl realized that they weren’t primary symptoms but people may notice them. So, in that mindset, even though they are not the actual herpes symptoms (lesions, etc) , are there specific things ppl who have confirmed genital HSV1/2 have experienced more frequently in your experience with your actual patients ? Increased acne, increased petechiae/cherry angioma, more likely to get male fungal infections, persistent tiredness, etc? Those aren’t leading questions/examples, I’m just genuinely curious what you’ve seen with patients, even if it is pretty uncommon or not directly herpes related (but maybe from immune response for example).

3) I’ve read on the NIH website (link below) that herpes simplex may be a cause of pudendal neuralgia. I’m not trying to debate who is right or wrong, that doesn’t help me at all. Instead, in your experience, when someone has confirmed genital HSV1/2, and also complains of pudendal neuralgia with no other obvious triggers, who would your first refer them to at that point? Pelvic PT, Neurologist. Someone else ?
https://rarediseases.info.nih.gov/diseases/10713/pudendal-neuralgia

Thanks again – and I’m serious, I’m not questioning your experience/expertise, i value it, so I’m really looking for next step guidance. I’m also happy to talk more about this off the forum when we talk Western Blot if there is an SF area lab available.

[Terri Warren]

1) I definitely will do a western blot in the future. Have you worked with any SF Bay Area labs in recent years? I don’t want to navigate finding a lab myself.
Yes, I have. We use one often in the south bay area, Sutter Health

2) Back to my COVID mindset. We know the main symptoms were respiratory, but some patients would experience other things like gastrointestinal issues. The CDC or others would put rough percentages on it, and i think reasonable ppl realized that they weren’t primary symptoms but people may notice them. So, in that mindset, even though they are not the actual herpes symptoms (lesions, etc) , are there specific things ppl who have confirmed genital HSV1/2 have experienced more frequently in your experience with your actual patients ? Increased acne, increased petechiae/cherry angioma, more likely to get male fungal infections, persistent tiredness, etc? Those aren’t leading questions/examples, I’m just genuinely curious what you’ve seen with patients, even if it is pretty uncommon or not directly herpes related (but maybe from immune response for example).
None of the symptoms that you describe above are atypical herpes symptoms, no.

3) I’ve read on the NIH website (link below) that herpes simplex may be a cause of pudendal neuralgia. I’m not trying to debate who is right or wrong, that doesn’t help me at all. Instead, in your experience, when someone has confirmed genital HSV1/2, and also complains of pudendal neuralgia with no other obvious triggers, who would your first refer them to at that point? Pelvic PT, Neurologist. Someone else ?
https://rarediseases.info.nih.gov/diseases/10713/pudendal-neuralgia
Probably PT, yes

Thanks again – and I’m serious, I’m not questioning your experience/expertise, i value it, so I’m really looking for next step guidance. I’m also happy to talk more about this off the forum when we talk Western Blot if there is an SF area lab available.
Yes, we definitely will talk more in January!

Terri

[Terri Warren]

1) I definitely will do a western blot in the future. Have you worked with any SF Bay Area labs in recent years? I don’t want to navigate finding a lab myself.
Yes, I have. We use one often in the south bay area, Sutter Health

2) Back to my COVID mindset. We know the main symptoms were respiratory, but some patients would experience other things like gastrointestinal issues. The CDC or others would put rough percentages on it, and i think reasonable ppl realized that they weren’t primary symptoms but people may notice them. So, in that mindset, even though they are not the actual herpes symptoms (lesions, etc) , are there specific things ppl who have confirmed genital HSV1/2 have experienced more frequently in your experience with your actual patients ? Increased acne, increased petechiae/cherry angioma, more likely to get male fungal infections, persistent tiredness, etc? Those aren’t leading questions/examples, I’m just genuinely curious what you’ve seen with patients, even if it is pretty uncommon or not directly herpes related (but maybe from immune response for example).
None of the symptoms that you describe above are atypical herpes symptoms, no.

3) I’ve read on the NIH website (link below) that herpes simplex may be a cause of pudendal neuralgia. I’m not trying to debate who is right or wrong, that doesn’t help me at all. Instead, in your experience, when someone has confirmed genital HSV1/2, and also complains of pudendal neuralgia with no other obvious triggers, who would your first refer them to at that point? Pelvic PT, Neurologist. Someone else ?
https://rarediseases.info.nih.gov/diseases/10713/pudendal-neuralgia
Probably PT, yes

Thanks again – and I’m serious, I’m not questioning your experience/expertise, i value it, so I’m really looking for next step guidance. I’m also happy to talk more about this off the forum when we talk Western Blot if there is an SF area lab available.
Yes, we definitely will talk more in January!

Terri

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