How Convinced Should I Be?

[wgs88]

A little over a year ago I had a (relatively low-risk) encounter that was nonetheless out of character for me and sent me into a panic shortly after thinking I may have contracted HSV orally. Never really had classic “blister” symptoms, but a week or so after exposure had minor flu symptoms with strep-like sore throat. Got a slightly painful pimple-esque whitehead (single) under my lip (not on line, but close) a couple weeks later, but that’s about the closest I got to anything that might be a cold sore. For what it’s worth, my doctor saw the lesion and did not think it was herpes, but that didn’t convince me. I needed to wait (and worry) until enough time had passed to do an IGG test.

Initially, I took took a pair of antibody tests (Herpeselect), with the following results:

7 weeks after exposure:
HSV 1 = 0.50
HSV 2 = 0.07
(IGM unknown/was not tested)

12 weeks after exposure:
HSV1 = 0.30
HSV2 = 0.01
IGM = 0.45

So all negative. At first was taken aback a bit by the HSV1 “high negative” of the first test, but felt better that it lowered in the second test. I took the two tests as gospel, and armed with this and some psychotherapy was able to get on with my life. Until…

…Recently I’ve had a couple of instances of “whiteheads” popping up around my lip and chin area. Twice, I’ve had them on the lip line, or at least very close to it, but not on the lip itself. They are always single bumps/heads, never the raspberry clusters that are the typical manifestation of oral herpes. Sometimes these bumps are slightly painful, other times I don’t even know they are there until I look in the mirror. I have had acne issues since my teenage years, but I’m sensitive to stuff like this now because of the herpes scare. I have not engaged in any risky activity since that encounter over a year ago, so I don’t think any of this would be from a recently-acquired HSV infection, if that’s what it is.

Anyway, I went to my doctor and asked for one more antibody test. I figured maybe it was possible it took me a little longer to seroconvert, but if the results came back negative over a year later that should be more or less definitive. So here are my most recent results:

13 months after exposure:
HSV1 = 0.25
HSV2 = 0.04
IGM = 0.62

Cool, right? Well, not long after getting those results and starting to rest easy, I got yet ANOTHER “whitehead” under my lip! Not on the line, but just beneath. Single head, slightly uncomfortable but not painful. It ended up popping on its own shortly after it manifested, and what struck me as odd was that the area really burned for many hours as it was healing. So now I’m back to being worried again. Should I be?

I should note that I’m not worried about my personal well-being, as I know that this disease is relatively harmless and basically a skin condition. However, I’m in a relationship with someone who does not get cold sores and I want to know if I need to refrain from kissing or other activity when I have a bump like this happening. I did share my concern with her and we were both relieved at my latest IGG results, but like I said now I’m worried about it all over again. I’m hoping that it’s an unjustified worry, but please let me know your thoughts. Thanks!

[Terri Warren]

The pimples that you describe do not sound like herpes lesions to me. Most people who get cold sores would describe them as blisters, not pimples. They usually take about a week to go away and yours sound like they are going away much more quickly than that. However, I know that you are concerned and your labs are slightly concerning to me. The screening ELISA test misses 1-2 out of 10 cases of HSV 1, so not great. If it would help you to relax a bit about this, we could order a western blot which is much better at picking up HSV 1 infection. It is done at the University of Washington but we can order it drawn at any local Quest lab in all but five states in the US.

The other thing that you can do is ask your doctor to do a PCR swab of the pimple when it comes. If they don’t want to do that or you don’t want to ask, you can become a patient of the clinic and we can send you PCR swabs that you could gather at home and ship back to us for lab processing.

Do you know that your partner is actually HSV 1 negative or do they just report no cold sore history? Those are two totally different things. the vast majority of people who are infected with HSV 1 and HSV 2 are not aware of their infections and may actually be without symptoms.

You’ve got two more questions to ask so fee free.

Terri

[wgs88]

Thanks for the quick reply! No, my partner has not been tested, so we’re going off her asymptomatic history. As for the swabbing, it’s always hard for me to do that because you need to get in with the doctor almost same-day. The one time that happened, he looked at it and said it just looked like a pimple and there was “nothing to swab”. I’d be open to a Western Blot, but is it covered at all by medical insurance?

Question #2 would be: what exactly is it that is concerning about my results? Is it actually something about the values themselves, or just the thought that I might be one of the 1-out-of-10 misses?

Thanks!

[Terri Warren]

It is not at all reliable to go off the a history of no symptoms, unfortunately. I would recommend testing to know exactly where she stands with HSV 1 AND HSV 2.

The high negatives worry me some. And also just knowing that the test isn’t great in terms of HSV 1 (much better for HSV 2).

The western blot should be paid for by insurance if you have met your deductible, etc.

In terms of the swabs for lesions, that’s why I said we could send you PCR swabs and you could return them to us and we would send them to our lab for processing. Up to you of course. You could also ask your provider to have swabs to take home and return to them after collection. This allows people to get swabs done when their lesions are brand new.

One more question?

Terri

[wgs88]

I’m not sure off hand if I’ve met my deductible, but I don’t think so. Let’s say I have not…how much would I be looking at out-of-pocket for the WB?

[Terri Warren]

About $200. It varies from lab to lab but if you write to UW for a kit, have your blood drawn and sent back, that’s about what most people pay. Also that is true for people for whom we order this through Quest labs.

We’ve finished with the initial subscription. If you have more questions, please renew your subscription for either two or three more questions.

Terri

[wgs88]

I would like to put this behind me once and for all. I would like for you to order this through Quest as you suggested, if this is possible in California.

[Terri Warren]

Remember that I have no idea who anyone here really is. I’ve asked to keep this anonymous.
If you wish to become a patient of our clinic so that we can order tests for you, you need to call and set up an appointment for a phone consultation where you can arrange this. 503-226-6678.

Terri

[wgs88]

Hi Terri – So I went in for my WB appointment as we discussed at the local lab and they had no record of it. They were able to treat me as a walk-in and got the clinic to fax over the order, but then were not finding the Order # in their system. At first they told me they didn’t do the WB for hsv anymore, but after some prodding said would call their main office and try to figure it out. After about an hour at the lab, I decided to leave and they said they would call me when they had answers. A couple hours later they called and said they could do it, but had to order a “kit” first and didn’t know when it would be delivered, but that they would let me know. Are they getting the kit from Washington? Any idea how long it will take for them to get it? I know I’m already going to have to wait 2 weeks for the results, so I’m hoping they can get the kit sooner than later. I’m disappointed because I was hoping to at least have my blood drawn and out the door for testing today. 🙁

[Terri Warren]

So this is kind of a problem because I have no idea who you are and I don’t want you to tell me.
Clearly something is amiss and I’m so sorry your had trouble. If I or someone in the clinic gave you an appointment confirmation code, then the appointment was made as we do not get a code until the appointment has been finalized. When we make an appointment, usually it takes the lab 2-3 days to get the kit. If you are still concerned and need to speak with the office, someone will be in Monday, but the office is closed for the Thanksgiving weekend. The kit should be there by Monday. If there are other issues, please call the clinic on Monday.

Terri

[wgs88]

That’s cool…I was afraid it would take like a week or two before they would even get the kit. They never asked for my conf. code (but then, I never thought to give it to them since they did go ahead and check me in.) It was more about that they weren’t able to call up the order code or find the WB anywhere in their computer. If we are only talking about a few days for them to get the kit, that’s not too bad. Thanks for checking in on Thanksgiving eve! And happy Thanksgiving!

[Terri Warren]

Thank you.

We have now exhausted all of the initial questions (and more). If you have more concerns, please renew your subscription.

Terri

[wgs88]

Hi Terri – Sorry I missed your call with the WB results a little while ago, but I’m thrilled to know I came back negative for both HSV-1 and HSV-2! Thanks so much for helping me clear this up once and for all.

I do have a follow-up question, though, but please understand that I am 100% accepting these results as the final word on HSV and definitely moving on! However, do you know of any other maladies or skin conditions that can mimic oral HSV symptoms? For example, the last time I was sick with a cold I developed a somewhat painful “zit” right on my lipline. So for example can being sick (with a suppressed immune system) cause everyday acne or an infected follicle to pop up the same as it would a cold sore, or was that just a case of bad timing?

[Terri Warren]

I really don’t want to mix clinic patients and this forum questions. I will be in the office tomorrow if you have questions for me. Also, I gave out five western blot results today, all negative for both, so I don’t know who you are. Let’s keep it that way, OK?

Terri

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