Negative testing, but symptoms persist

[RegretandAnxiety]

It all started approximately 17 weeks ago, 1 week after sleeping with a woman that I really didn’t know, and shouldn’t have, but I was in a dark place at the time.

I had protected oral and vaginal sex and a day or two later, felt that I had to constantly urinate, which lead me to go see my PP to get checked. He ordered tests for chlamydia and gonorrhea, which would have been 2 days after the encounter, and those came back negative.

After receiving this result, my symptoms subsided, but a couple of days later (1 week after encounter) i started feeling stinging in my lower thigh area (just above the knees) and my back felt like it was on fire, mostly the upper area, around the shoulder blades and my penis glans were irritated and somewhat red, no bumps/lesions however. At this point, I was freaking out again and went back to my PP and he said what he could see was folliculitis, but he ordered a full set of STD bloodwork. This included hep a and b, or b and c, can’t recall, HIV, herpes (type specific igg and combined igm) and all those came back negative, this was 9 days after encounter. The igg was 0.1 for type 1, and 0.05 for type 2.

Since then my herpes symptoms really haven’t gone away completely, and they’ve also changed. I’ve had sensations of stinging in my thighs, my buttocks, my scrotum, my anal area, and me penis glans. I’ve even had jock itch sensation, but no redness. I’ve felt muscle aches and back pain as well; all of the symptoms are mild I would say, but annoying nonetheless. The only bumps I saw on my body were what looked like pimples to me, and as I have a lot of body hair, this could definitely be folliculitis. The pubic area has had a couple of bumps, but they were hard and looked like they were under the skin, rather than on. As my symptoms really never went away, I retested myself via one of the online STD sites through Quest labs at a couple of days shy of 9 weeks, and everything came back negative.

I then went to see a dermatologist and she examined me and stated folliculitis and prescribed clindamycin gel as well as a topical cream to try to help with the stinging sensation. I used the clindamycin gel and noticed that the pimples on my body went away quickly, and since using it, pretty much haven’t really returned. The topical cream I was prescribed (zonalon) would only numb the stinging sensation for a little while throughout the day and didn’t work too long. I went back to the derm and she prescribed pramosone. This topical cream seemed to work better, for example, if my penis glans felt irritated, or my thigh area, I would apply some and it would alleviate the sensation for a couple of hours.

Still being paranoid, I went to Harborview medical at UW in Seattle and a couple of doctors in the infectious disease/STD clinic thoroughly examined me (very awkward for me, mind you) and they said they saw absolutely no signs of any herpes and that I need not worry anymore.

To be sure, I have taken another igg type specific test at 16 weeks (+1 day) through my PP and this came back negative with type 1 being 0.06 and type 2 being 0.05. I know all the evidence seems to point to being herpes free, but this feeling I have is driving me insane, every doctor I’ve seen believes it’s in my head, and I am a paranoid individual, but could all this type of herpetic sensation be coming from my head?

I’d like to move on from this, but having a difficult time and still beating myself up over this one time foolish encounter.

Appreciate any of your expert advise Terri.

Thanks.

[Terri Warren]

I’m beat – will respond tomorrow, OK?

Terri

[RegretandAnxiety]

Yes, of course Terri, I just wanted to put out my post so you could see it tomorrow… 🙂

Thanks for the help as always.

[Terri Warren]

I really don’t think you have herpes as your testing is negative at 16 weeks. For HSV 2, that is a very reliable test, picking up 98 out of 100 infections, compared to the gold standard western blot.
A red penis does not suggest herpes to me. Herpes is more likely to be specific lesions vs. general redness.
Also, the clinicians at Harborview are nothing short of excellent clinicians and if they had been at all concerned about herpes, they would have expressed this concern to you. I have the utmost respect for these experienced STD clinicians. If you want a western blot for extra reassurance, we can arrange that for you through our clinic. But honestly, I don’t think you have herpes. Nothing in your description of your symptoms or your lab testing would suggest that as even a remote possibility, in my mind, given what you have told me.

Terri

[RegretandAnxiety]

Hi Terri,

I’m confused as I’ve read so much and my symptoms sound like herpes prodromes, minus the lesions.
I thought stinging/itchiness in the boxer short area where I’m exhibiting it is a herpes symptom?
I have a couple of scabs on my pubic area, but I had scratched at the ‘pimples’ there, one of them is still hard (the bump, not the scab) and the other one had bled when I scratched it. How long do herpes scabs take to heal generally, is there a rule of thumb that if the scab is around for x number of days it’s not herpes?

I would likely do the western blot, but I’m not in the US anymore, though, I do believe there is a lab in my area that does perform the western blot, just need to dig into it.

The other part that worries me is that another person posted here that even after a year the igg was coming out negative and their experience in terms of constant symptoms sounded similar (https://www.westoverheights.com/forum/question/seroconversion-time/). What’s different here vs my case?

Thanks again Terri.

[Terri Warren]

Stinging and itchiness in the genital area without any lesions and a negative antibody test does not suggest herpes. Herpes scabs usually fall off within a few days. In addition, you have seen a clinician who diagnosed something completely different. Yes, there is a person on this forum who tested negative via IgG and positive via western blot but she is clearly the exception rather than the rule. We know the test picks up 98 out of 100 infection so someone is the 2%, but if you read this forum, about 50% feel they are the exception! So is it possible this is you? Yes it is possible but unlikely
If you are not in the US, where are you? The only other place I know someone can get the western blot if Australia.

Terri

[RegretandAnxiety]

Hi Terri,

I do recall Dr. Handsfield also saying that the prodrome symptoms w/o the lesions does not suggest herpes, I’ve just been struggling with this as I can’t think what else it could be since this all came about after a sexual encounter. Could anxiety truly lead to all these types of symptoms for such a long time? Should I be worried about the two scabs on my pubic region?

I’m located in Canada and from what I’ve seen there is either a lab that does it, or a specific clinic in my area that does it, but I’ve yet to confirm if this is in fact correct.

Thank you.

[Terri Warren]

I agree that prodromal symptoms without lesions is not suggestive of herpes.
Are there no Quest labs in Canada? I thought there were. If there are, we can place an order to get your sample shipped to the US.

Terri

[RegretandAnxiety]

Is it also typical of herpes to affect so many parts of the boxer short area at once? My butt, thighs, penis glans, rectal area and scrotum are all irritated right now and it varies throughout the day generally which area is affected.

I don’t believe there are quest labs here. There is life labs which is the lab that I’ve read does the western blot, but need to confirm.

Thanks.

[Terri Warren]

No, herpes does not cause irritation all over the boxer shorts area. Yet another reason to believe that your symptoms are NOT related to herpes.

Terri

[RegretandAnxiety]

Thanks Terri. Does what I’m experiencing sound like any other STD out there?

[RegretandAnxiety]

Oh man, the two scabs on my pubic area have broken open and they look like ulcers, which scares the crap out of me.
They are hard bumps, but with craters, now I’m really concerned!

[Terri Warren]

There is absolutely nothing I can do from here but YOU can get yourself into a clinic or your doctor’s office and have these evaluated right away today. Will you do that please?

Terri

[RegretandAnxiety]

Took a while to get back to you Terri, but I went and had the scabs swabbed and the following night I had a couple of other blisters pop up in the area so I had those swabbed within 48 hours of seeing them.
Both swabs came back negative, but my symptoms which still linger sound far too much like HSV to be anything else. I’m guessing the swabs were cultures and not PCRs, but waiting on my doc to confirm.

I’m going to try to seek out the Western Blot here in Canada, but if that’s not possible, I’m going to be in Seattle and Portland towards the end of November visiting my girlfriend.
I absolutely want to rule out HSV before we are intimate again, so I’d like to figure out the quickest way to get the testing done while I’m visiting; not so that her and I can be intimate if it’s negative, but simply because I’m only in town for a few days and want to spend as much time with her as possible.

Can you advise what would be the quickest way to get the western blot testing (ie: blood draw) done while I’m visiting?
I know I’ll have to contact your clinic and that’s fine, but I would appreciate the information ahead of time to ensure there are no hiccups or delays; I want to essentially go and get the blood drawn at quest or whatever lab within an hour to minimize time away from my girlfriend. Hopefully the labs are open on a Saturday so I can simply wake up early go and get the blood draw and continue on with my day.

Thanks Terri.

[Terri Warren]

the best way to get the western blot quickly is to have blood drawn there and ship it to us from Canada. If you have to wait until you are here, then we can put in a requisition for you to be drawn when you are in town. You will need to contact me for a consult to get this all arranged before you come if you opt not to have it drawn in Canada and shipped to me.

Terri

[RegretandAnxiety]

I’m not sure shipping it would be the best way. Packing the blood and getting it sent wouldn’t be something I’m comfortable with. If I can’t find a way to do the test here I will speak to your clinic to get a requisition done for when I’m in Seattle. Would I simply get the requisition for a quest lab for Seattle get the blood drawn and that’s all I would need done?

How long would it take to get the results of the test? How accurate would it be at 5 days shy of 6 months?

If the WB is negative, can you advise if there is any other STI out there that I may have been exposed to based on my symptoms?

At 9 weeks I did a multi panel test which included hsv, HIV, hep a/b/c, chlamydia and gonorrhea and all were negative. Should I be testing for any others?

Thanks Terri. I really just want to be able to move on with my life and so far I haven’t been able to.

[Terri Warren]

Yes, we would get a requisition for a lab in Seattle. You would go there to get your blood drawn but you would need to find one online that is open on Saturday.
If the western blot is negative, which I suspect it will be, I don’t know what your symptoms might be caused by. The fact that your sexual condom was fully protected, that it was a single encounter, makes the risk of an STI low here. You need to start believing your test results, i believe.

Terri

[RegretandAnxiety]

Hi Terri, I think my hopes are now dashed. I had a red area pop up in the same spot as the initial scab and looking at it closely looks like a small cluster of blisters and they are itchy. I guess the IgG for me truly was a false negative now, even at 16 weeks.

I don’t know if this would be considered part of my initial outbreak or a recurrent one. Would a recurrent one come so quickly? About 3 weeks apart. I suppose the only reason to do the WB now is to determine the type of infection, however since the oral sex was condom protected, is there really a point in doing the WB now for typing purposes?

I’m really disappointed in myself now and not sure how I’m going to deal with this. Especially since I met an amazing woman after my stupid encounter.

How can I protect her should I decide to be intimate with anyone again? I know antivirals and condoms do help, but long term we have been talking about marriage and children. Are children even possible considering my affliction?

Ugh, I don’t know how I’m going to live with myself now.

[Terri Warren]

You need to go in RIGHT AWAY and get a PCR swab test of this lesion, like TODAY. Can you do that?

Terri

[RegretandAnxiety]

Hi Terri, though I appreciate you directing me to get a swab, I’m not sure where I would be able to on a Sunday. I’m going to contact the public health clinic hotline tomorrow to see if they do the pcr or not. Truth is though, I’m now convinced it is definitely herpes. It took a long time to rear its ugly head, but after 5 months of dealing with symptoms, these blisters are definitely herpetic in nature, it sadly can’t be anything else. I would appreciate if you could respond to my previous questions as that information will be of great value going forward.

Thanks.

[Terri Warren]

I do think the western blot would give you the answers that you seek.
Yes, children are possible given your herpes infection, certainly. If you or she are very worried about transmission and always want to wear condoms then there is always artificial insemination with your semen and a turkey baster – it does work!
If this is a herpes outbreak, it is likely a recurrence.
If you use condoms and take antiviral therapy, her chance of becoming infected are low – about 2% per year.

Terri

[RegretandAnxiety]

So, I was able to complete the Western Blot in Canada, the test is done via Lifelabs, and completed in their lab in Victoria BC.
My results came back equivocal for both HSV1 and HSV2, says Immunoblot IgG for both types.
Is this actually the WB test? Now I’m starting to wonder if they did the correct test.
Now I’ve never had a cold sore, so I’m also not too confident in this test.
I did it at 167 days past possible exposure, which should likely be enough time to product true results no?

Not sure how to proceed from here, if this truly is a WB test.
Appreciate any guidance Terri.

[Terri Warren]

No, that is not a western blot, it is an immunoblot which we find to be a very difficult test to interpret, now especially since it is equivocal.
If you can get your blood drawn and send it to us somehow, we will get you a western blot.

Terri

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