A confusing, depressing, and difficult five years

[takeiteasy]

Hi Terri

I’m a 34 year old man. 5 years ago I met my wife. During the first two weeks we had sex every day, and sometime around the 10th day, I got what I thought was a “cut” on my penis shaft. A few days later a number of small scattered scabs appeared on my penis shaft. No obvious blisters, they never ulcerated, and there was no pain. I went to see my GP, and he said it might be herpes and took a swab but the swab was lost and I never found out my result. I then told him more about my symptoms, that I was in no pain, etc. He told me that if I had herpes there would be pain and fluid, and he didn’t think I had herpes after all. I spoke to my dermatologist and he said it did not sound like herpes.

3 months later I got another “outbreak” on my penis, consisting of a handful of clear bumps that disappeared in a matter of 12 hours and scabbed over. They did not ulcerate and were painless. I took a picture and spoke to a different doc online who told me it was not herpes because herpes is painful and I would have blisters and fluid.

In the last four years I got occasional scabs on my shaft 1-2x a year, always near the middle shaft or lower left side. I never saw any blisters. 6 months ago, after a Covid shot, two obvious blisters showed up on my penis shaft . I showed a picture to a dermatologist who said it didn’t look like herpes as they weren’t clustered and healed quickly, but to get tested.

3 months ago I was diagnosed with Crohn’s disease and put on methotrexate and infliximab. Shortly thereafter a cluster of obvious blisters showed up near the tip of my penis on the opposite side of where the previous “breakouts” occurred. They lasted a few days before scabbing over. Again, no pain, no ulcer. I spoke to two docs over the phone, one said it sounds like herpes, other is 50/50

I know I should have gotten seen and swabbed, but I’ve had mental health issues over a potential HSV diagnosis. Should I now get an IgG or WB? What does it sound like?

[takeiteasy]

I just wanted to add that ironically within the last 24 hours, a small clear blister like lesion has appeared on my penis. Unfortunately, like mostly all of my former episodes over the last 5 years, this bump came without warning, just appeared out of nowhere, and lasted less than 24 hours before disappearing, and leaves no ulcer whatsoever. I called planned parenthood but they don’t accept walk-ins and their next appointment is next week. I called my GP over and over again and I finally have an appointment today, but they told me over the phone yesterday they will not swab it unless there is an open ulcer and fluid. Of course, my lesions have never ulcerated nor have they ever contained obvious fluid so I think it’s almost pointless to even go to the doctor. They probably think I am crazy.

Literally within 24 hours my penis went from looking normal to have a small blister on it, to now a faint mark that is indistinguishable from the normal skin except for the fact I can feel a tiny pinprick scab. This has been the story of my life for five years: by the time I notice the small clear bump, within 24 hours it’s already become a scab. By the way the small bump is never on a red base, it sits on normal looking skin. Hence why my dermatologist told me before he didn’t think I had herpes because he said the timeline wasn’t accurate, that if I had herpes the blister like lesion wouldn’t disappear within 12-24 hours and it would be in clusters on a red base.

However the last, most profound and obvious episode I had the lesions were there for a little longer than 24 hours, but I wasn’t see by a provider. Also, during that that episode the blisters were on the complete opposite side of my penis where I usually get lesions. I am beyond frustrated, but I am going in today to see my doctor anyway.

• This reply was modified 1 year, 4 months ago by takeiteasy.

[Terri Warren]

you definitely need to get a herpes antibody test. You can order it yourself on many websites and you can share the results with me to evaluate. You want the HSV IgG for HSV 1 and 2, type specific. If you’ve had cold sores in your lifetime, you don’t need the HSV 1 test.

It’s very hard to tell what’s up here from what you’ve posted. The duration of these lesions is so short.

Terri

[takeiteasy]

Hi Terri,

I went to to the doctor last week. Unfortunately once I arrived, the blister had subsided and all was left was a scab. The doctor would not do a PCR test even after I asked. He ordered an IgG test. The results came back positive for HSV-1 and positive for HSV-2, with no numerical value provided. I emailed him and asked for the index number for both subtypes because I am aware there are sometimes false positives, but he hasn’t responded yet. That being said, I would be a bit surprised if this ISN’T herpes at this point.

I say this because even though my blisters are usually short lived, the scab/red spot phase lasts for 5-10 days after. Before meeting my wife 5 years ago, I never had blisters or scabs on my penis randomly. Since having sex with her that first two weeks, it has happened 15-20 times within the last 5 years. My wife is also from a sub saharan African country and I am aware that for most African countries, HSV-2 rates are 40-60% for adult women, based on statistical data.

I do want to add that something odd has just happened. The one blister that popped up on my penis shaft 5 days ago is now almost gone. But today, two tiny, pin prick sized blisters appeared on the side of my penis head, where the shaft meets the head. I am concerned that since starting the immunosuppressant medication for my Crohn’s, and assuming this IS herpes, this issue is getting worse and my body can’t fight it. I have another appointment with a doctor next week to discuss. So my questions are:

1. How likely is this herpes? Does the fact that my lesions are painless make a difference?

2. Why would two more blisters pop up now in a different part of my penis, after the original blister is subsiding? I thought recurrent genial HSV tends to run a 7-10 course. Having another two blisters pop up 5 or 6 days AFTER the first seems quite unusual.

3. Do you have other clients with immunosuppression issues deal with the same thing, and is Valtrex effective?

[takeiteasy]

Just wanted to add it’s a few hours later and the new blisters are no longer tiny “pinprick” blisters, but are now larger and more obvious.

[takeiteasy]

One more update: The laboratory I took the IgG test at said they do not provide numerical values, and that if the index value is above 1.1 then it is deemed positive. Having them even provide this info to me was like pulling teeth.

[takeiteasy]

Hi Terri,

I responded to your reply with some questions 11 days ago and have not received any response. I just want to make sure you see this post so I am posting again, I hope this does not count against my credits.

[Terri Warren]

1. How likely is this herpes? Does the fact that my lesions are painless make a difference?
Usually herpes are at least tender and are not the size of pin pricks. But when you say they are larger now, I don’t know what to think.

2. Why would two more blisters pop up now in a different part of my penis, after the original blister is subsiding? I thought recurrent genial HSV tends to run a 7-10 course. Having another two blisters pop up 5 or 6 days AFTER the first seems quite unusual.
It is quite unusual and usually this kind of thing most often happens only with new infections

3. Do you have other clients with immunosuppression issues deal with the same thing, and is Valtrex effective?
Yes, Valtrex is effective even when people are taking immunosuppressive medicine.
What lab did your testing?
There is a IgG test that just gives positive or negative, but then they mentioned 1.1? That’s associated with a test that gives an index value. In my opinion,you need an IgG test that gives an index value. Quest and LabCorp give those.

I don’t think you have enough information with what you have so far to know for sure if you are infected.

Terri

[takeiteasy]

Thank you, Terri.

The Kaiser lab told my doctor the HSV IgG test they do only gives negative or positive results. Anything above 1.1 is positive and anything under is negative, but numerical values cannot be provided to physicians. I don’t know what test they used. Bizarre, right?

1. Should I get another HSV IgG test at a different place, OR go straight for a western blot?

2. I took one Valtrex pill 10 days ago, and I took a 7 day course of Valtrex a little over 3 months ago. Will this impact a future IgG or WB?

3. Can this infrequent Valtrex use impact a swab?

4. My primary care doctor emailed me a few days ago (the doctor who ordered my IgG was not my primary). My GP said “I never order IgG blood tests for HSV as there can be false positives and/or this is a nonspecific finding. Only a direct swab of the area for HSV is useful”

This is the third physician who has said they refuse to order HSV blood tests due to their limitations. Of course, now that I have gotten the HSV-1 and HSV-2 positive result, I almost want to see what the actual index values are.

What are your thoughts on his comment?

5. How often do people receive false positives due to equivocal results, cross reactivity, etc. for the IgG? Out of a 1000 tests, how many are false positives?

6. For 4 years my recurrent “skin lesions” on my penis have always been on the middle or left side of my shaft. Only since I starting taking Inflectra did this new crop of blisters appear near the right side of my penis on the rim near the head. During this last outbreak, one blister appeared on my shaft on Wednesday, and 5 days later 2 more blisters popped up near the rim. This never happened before. Did I spread it by touching the area because I am immunocompromised? My G.I. says I’m only modestly immunocompromised.

7. My lesions are painless, never ulcerate, but there is a 10 day period of scabs forming and falling off beginning the day after the blister. You said herpes is usually tender. I can squeeze the lesions and feel almost nothing. Perhaps they are extremely mildly tender, but I feel like that might even be a stretch.

Can this happen with herpes or is this a dead giveaway that it’s not herpes?

• This reply was modified 1 year, 4 months ago by takeiteasy.

[Terri Warren]

1. Should I get another HSV IgG test at a different place, OR go straight for a western blot?
Maybe go straight to the blot if you can afford it

2. I took one Valtrex pill 10 days ago, and I took a 7 day course of Valtrex a little over 3 months ago. Will this impact a future IgG or WB?
No

3. Can this infrequent Valtrex use impact a swab?
If you are taking Valtrex at the moment you get a scab, it could impact the swab test, yes

4. My primary care doctor emailed me a few days ago (the doctor who ordered my IgG was not my primary). My GP said “I never order IgG blood tests for HSV as there can be false positives and/or this is a nonspecific finding. Only a direct swab of the area for HSV is useful”
Apparently he doesn’t know about the western blot.

This is the third physician who has said they refuse to order HSV blood tests due to their limitations. Of course, now that I have gotten the HSV-1 and HSV-2 positive result, I almost want to see what the actual index values are
sounds like that isn’t going to happen

What are your thoughts on his comment?
My thought is that he is not aware of the gold standard western blot.

5. How often do people receive false positives due to equivocal results, cross reactivity, etc. for the IgG? Out of a 1000 tests, how many are false positives?

Most false positives happen in the low positive range. Not all. But most. If your index value falls between 1.1 and 3.5, there is a 50% chance that you will get a false positive. The vast majority of people will test either soundly negative or high positive. About 8% of people test in the low positive range, who test.

6. For 4 years my recurrent “skin lesions” on my penis have always been on the middle or left side of my shaft. Only since I starting taking Inflectra did this new crop of blisters appear near the right side of my penis on the rim near the head. During this last outbreak, one blister appeared on my shaft on Wednesday, and 5 days later 2 more blisters popped up near the rim. This never happened before. Did I spread it by touching the area because I am immunocompromised? My G.I. says I’m only modestly immunocompromised.
no, if this is herpes, you didn’t spread it – it simply traveled on a different nerve to get to the surface of the skin

7. My lesions are painless, never ulcerate, but there is a 10 day period of scabs forming and falling off beginning the day after the blister. You said herpes is usually tender. I can squeeze the lesions and feel almost nothing. Perhaps they are extremely mildly tender, but I feel like that might even be a stretch.

well, that speaks against herpes but not all lesions hurt. You still need a better test to know what’s going on here, in my opinion

Terri

[takeiteasy]

Hi Terri,

Thank you for the reply. I have a few follow up questions.

1. You said “Maybe go straight to the blot if you can afford it”. It is my understanding that the WB is very accurate (and indeed the gold standard), but it won’t tell me what part of my body my HSV is on and it won’t tell me if any current skin lesion is HSV related. Sure, it will give me a clue that the skin lesions I am experiencing are more likely to be herpes related, but that’s all it is, a clue. Many of my symptoms are atypical. Multiple doctors have said it isn’t herpes related. That being said, I am coming to the conclusion that almost all doctors are clueless when it comes to herpes, testing, and diagnosis.

Say I did get the WB, and it came out positive for both HSV-1/HSV-2, how likely would you say that my recurrent penile lesions are genital herpes of one kind or another?

2. You wrote that 8% of people who have an IgG test, do so in a range that is prone to false positives.

However I read that the US Preventive Services Task Force published a statement saying there is a 50% false positivity rate for the most common serological HSV test, the Herpeselect. I am providing the link and quote below:

https://jamanetwork.com/journals/jama/fullarticle/2593575

“Serologic screening in asymptomatic persons will likely result in a large number of false-positive results. Given the limitations of currently available tests, 1 of 2 positive results may be false. Given the test characteristics of the most widely used serologic screening test for HSV-2 and a population infection prevalence of 15%, screening 10 000 persons would result in approximately 1485 true-positive and 1445 false-positive results.”

It sounds like you are saying false positives are more in the 5-10% range for the IgG, but that’s not what the JAMA article says.

What do you make of the above statement by the USPSTF? Am I missing something?

Thanks for all of your help thus far. I’ll consider the WB.

[Terri Warren]

Say I did get the WB, and it came out positive for both HSV-1/HSV-2, how likely would you say that my recurrent penile lesions are genital herpes of one kind or another?
If your blot is positive for HSV 2, with 95% certainty, you have it genitally. If you’ve never in your life had a cold sore, you cannot know where your HSV 1 infection is, if you are positive for HSV 2

2. You wrote that 8% of people who have an IgG test, do so in a range that is prone to false positives.

However I read that the US Preventive Services Task Force published a statement saying there is a 50% false positivity rate for the most common serological HSV test, the Herpeselect. I am providing the link and quote below:

https://jamanetwork.com/journals/jama/fullarticle/2593575

“Serologic screening in asymptomatic persons will likely result in a large number of false-positive results. Given the limitations of currently available tests, 1 of 2 positive results may be false. Given the test characteristics of the most widely used serologic screening test for HSV-2 and a population infection prevalence of 15%, screening 10 000 persons would result in approximately 1485 true-positive and 1445 false-positive results.”

It sounds like you are saying false positives are more in the 5-10% range for the IgG, but that’s not what the JAMA article says.

What do you make of the above statement by the USPSTF? Am I missing something?

In the 1.1 to 3.5 index value range, half are false positives. But when you get a result higher, ther is very high likelihood that the test would confirm as positive by the western blot. That is a more accurate number. And these are IgG tests, not western blot. There is no such thing as a false positive western blot

And what I said is that 8% of othe blots that I order come back as indeterminate.

Terri

[takeiteasy]

Hello Terri. I ended up going to planned parenthood back in early March after another outbreak. By the time I was seen the blisters were gone and all that was left was some scabs (it only took two days to go from blister to scab). I was swabbed but the swab came back negative. That being said I took a HSV IgG blood test through quest diagnostics a few days prior to my PP appointment and the results were:

HSV 1 8.86 H
HSV 2 16.70 H

I explained to the planned parenthood nurse practitioner that since getting diagnosed with Crohn’s disease and being put on immunosuppressive medication, I had been getting blisters on my penis once a month for six consecutive months. I also showed her some pictures of prior breakouts. She noted the “straw colored” blisters and said it looked typical for herpes. She told me to assume it was herpes even if the swab came back negative. I got Valtrex from my GP and have been taking 500mg a day and I have had no new outbreak in two months.

My questions to you are:

1. How likely is it that the HSV-1 is a false positive due to the cross reactivity? My wife gets cold sores by the way, but I’ve never had one.

I’m still processing my diagnosis. I would be shocked if what I have wasn’t herpes, but I also don’t have a positive swab, and a part of me still wonders “could it be herpes?”. But when I take into account the fact I had 7 breakouts in six months, immediately after being immunosuppressed, it’s hard to ignore that. Couple that with now taking valtrex and the outbreaks have stopped.

2. Would you say based on all of my recurrent symptoms, the IgG blood test, and everything else, I should just assume I have herpes with a high level of confidence?

3. Considering my high index value range for HSV-2 couple with symptoms, would you even recommend getting more swabs to nail down a DX?

The last time I had blisters I literally got into a planned parenthood within 48 hours and the swab was STILL negative. It also cost me over $200.

[Terri Warren]

. How likely is it that the HSV-1 is a false positive due to the cross reactivity? My wife gets cold sores by the way, but I’ve never had one.

I would say that both of these results are strong positives, not due to any cross reactivity

I’m still processing my diagnosis. I would be shocked if what I have wasn’t herpes, but I also don’t have a positive swab, and a part of me still wonders “could it be herpes?”. But when I take into account the fact I had 7 breakouts in six months, immediately after being immunosuppressed, it’s hard to ignore that. Couple that with now taking valtrex and the outbreaks have stopped.

2. Would you say based on all of my recurrent symptoms, the IgG blood test, and everything else, I should just assume I have herpes with a high level of confidence?
Yes

3. Considering my high index value range for HSV-2 couple with symptoms, would you even recommend getting more swabs to nail down a DX?
We know that 95% of those who test positive accurately for HSV 2 are infected genitally and most HSV 1 is still oral, though increasingly in younger people, we see it genitally. I have seen false positives at this level for HSV 2 but very rarely. If you want more confirmation do the western blot. Your lesions seems to last such a short time, it likely isn’t going to be easy to get a positive swab unless your provider would allow you to take home swabs and gather them yourself and return them to be processed.

Terri

[Author]

Posts