Non-Primary HSV2 WB Reliability

[Anon789]

Hello,

I have had many HerpesSelect IgG tests over the course of five years, all of which have come back negative for HSV 1 and 2. Admittedly, I have been obsessive about this since a sexual assault, and I finally ordered a Western Blot to try to put my mind at ease. The WB came back positive for HSV1 and negative for HSV2 (not too surprising since I seem to recall having a cold sore as a child). Hearing that the WB is extremely accurate (99%?), I felt pretty good about this for a while.

However, I came across this study today, and it has me a bit freaked out. Am I reading correctly that for non-primary HSV2, the WB only picked up 85% of cases by 6 months? For someone who already has HSV1, it sounds like testing for HSV2 by IgG or WB is much less reliable. Is this accurate, or am I interpreting the results from this study incorrectly?

http://journals.lww.com/stdjournal/Fulltext/2003/04000/Raising_the_Consciousness_for_Identifying_and.7.aspx

Thank you so much for your assistance!

[Terri Warren]

I’ve written to Anna Wald to ask her interpretation of these results found in a 13 year old study. Let me get back to you with her response.

Terri

[Anon789]

Thank you! In the meantime, could you please address a couple other random (and admittedly, completely paranoid) questions?

1. I have seen in your posts that there are a handful of patients you’ve had that have swabbed positive for HSV2, but have always been IgG and WB negative. Is this because these people didn’t develop antibodies to the virus, they don’t have enough antibodies, or is it that the test can’t detect their antibodies? I’ve always worried that I have HSV2, but that my body just isn’t making antibodies to fight it (see…super paranoid). Is it possible to catch HSV2, and make no antibodies?

2. I have had tiny blisters showing up all over my lips every few weeks for the past few years. Swabs/PCR have been negative, and doctors have said it doesn’t really look like herpes. The dermatologist thinks that we should do a biopsy, and that would definitely tell me if it was herpes. I think I’ve read that biopsies can’t by typed, but are they at least accurate in giving a positive/negative herpes result? If I got a negative biopsy result, do you think I could move on knowing the blisters aren’t herpes?

I’m completely losing my mind over this, and until I can find out where these lip blisters are coming from, I don’t think I’ll be able to relax about it.

Thank you!

[Terri Warren]

1. I have seen in your posts that there are a handful of patients you’ve had that have swabbed positive for HSV2, but have always been IgG and WB negative. Is this because these people didn’t develop antibodies to the virus, they don’t have enough antibodies, or is it that the test can’t detect their antibodies? I’ve always worried that I have HSV2, but that my body just isn’t making antibodies to fight it (see…super paranoid). Is it possible to catch HSV2, and make no antibodies?

We don’t really understand what is going on with the few people who are swab test positive and western blot negative. But remember – the people have LESIONS – that’s why we know they really are infected. I don’t see that being the case with you.

2. I have had tiny blisters showing up all over my lips every few weeks for the past few years. Swabs/PCR have been negative, and doctors have said it doesn’t really look like herpes. The dermatologist thinks that we should do a biopsy, and that would definitely tell me if it was herpes. I think I’ve read that biopsies can’t by typed, but are they at least accurate in giving a positive/negative herpes result? If I got a negative biopsy result, do you think I could move on knowing the blisters aren’t herpes?

In my extensive experience with oral herpes, it does not present as tiny blisters showing up all over the lips. Not at all. It presents as a couple of blisters that sometimes join together into one big blister that then ulcerate and form a crust. I’m quite sure the dermatologist would be able to tell what looks like herpes and what doesn’t. You could have a biopsy done I suppose if that’s what they think is advised. I’m wondering if they are talking about doing that just to satisfy you that this is not herpes.

You are obsessing over this. You don’t need me to tell you that probably. You want 100% certainty about whether you are infected with herpes or not. You can’t have that. There is no way – you just have to go with what is most likely and live your life! Or, alternatively, you can be anxious, constantly trying to sort this out and missing out on life. Your choice, but I think you would be far happier trying to embrace the tiny percentage of uncertainty there remains with herpes western blot testing.

Terri

[marky]

I dont know if it is encouraged to comment on other posters’ questions, but I had similar concerns and found this thread interesting. I hope it wasnt my question that sparked your nerves, Anon. I am also sorry to hear about your sexaul assault, that is terrible and breaks my heart!!
The couple things I have found out (and Terri can definitely correct me if I am wrong!) is that I think of Terri’s other patients who did not test positive for HSV2 on WB, only half HSV1, so that didnt seem to be factor. (I think I saw that on medhelp). In regards to the study, several patients dropped out of the study before they seroconverted and thus were unfairly counted as non-serpconverters and skewed the numbers. Also, it is not stated in the study if any were on antiviral therapy during the study, which would have delayed results. I am looking forward to Dr. Wald’s response to Nurse Warren’s email to get the official word on all this though… I think the University of Washington’s official stance is that the WB is over 99.5% accurate in regards to false negatives. I know that 73% is a super scary number, but perhaps this will get to the bottom of it!

[Terri Warren]

Thank you Marky, yes, those are the thoughts that I have posted and also Anna’s thoughts. I think one of the big things we know since that was published 13 years ago is the impact of antiviral therapy. I had a patient who began suppressive therapy at first infection and kept it up for 9 months. She remained seronegative by western blot. Finally, she needed to prove legally that she had seroconverted and so she finally agreed to come off suppression and serconverted pretty quickly. We just don’t know enough about the people in the study and their antiviral therapy.

Terri

[Anon789]

Thanks, Terri. Yes, I am definitely obsessing. But I am so tired of looking the way I do 75% of the time (random blisters, red spots, and rough patches on my lips). It’s so embarrassing and it makes it really hard to not think about it. We’re also trying to start a family, so I have massive anxiety over infecting my child with HSV.

I did get some more PCR swabs from your clinic, so I’ll be sending those in, as well. Previously, they’ve been negative.

The dermatologist isn’t able to pinpoint what is causing the outbreaks, and she’s said that the only test left that she can think of is a biopsy. I’m not too thrilled about something that will leave a scar, but if it can help with a diagnosis, I am willing to do it. Going back to my previous question, if a biopsy is negative for herpes, do you think I can put this to rest? How conclusive would a biopsy be (besides the fact that it can’t be typed, would it at least be accurate in a pos/neg herpes result?)?

Thank you so much!

[Terri Warren]

I personally don’t know how accurate a biopsy is for diagnosing herpes. I believe that PCR is far more sensitive, but I guess you could do a biopsy and see what comes of it. So the dermatologist has no idea what is causing your symptoms?

Terri

[Anon789]

Hi Terry,

Thank you so much for the quick response.

No, they haven’t come up with anything. I have taken rounds of antibiotics, medications for yeast infections, and nothing helps. I’ve also had allergy testing done (no allergies noted), I’ve made drastic changes to my diet including taking sugar and caffeine out, I’ve only used Vaseline on my lips for over a year now, and I still have outbreaks. I don’t know what else would cause recurring blisters on the lips besides herpes at this point. The frightening part is that Valtrex helped twice (Oct and Nov last year) and then it stopped working (symptoms then started getting worse on Valtrex after a few months). Between January and March I had almost continuous outbreaks with only a max of 10 days between.

I’m exhausted, depressed, and anxious. I look horrible. My job performance has suffered as I am extremely embarrassed in front of clients. I’m afraid of infecting someone. I just want it to end.

[Terri Warren]

I’m so sorry, you sound really miserable. Did you do the PCR swabs that you sent to the clinic when there was an actual blister? Did you rub aggressively? The fact that you aren’t responding to the herpes medicines combined with negative PCR swabs also makes me wonder if this is all really herpes.

Terri

[Anon789]

Thanks, Terri! Miserable seems to be an understatement at this point!

The last PCR swabs I did were right at the end of an outbreak. The blisters were healing, but my lip was still really red and irritated. I also did a swab all over the inside of my mouth and throat, and I did rub pretty aggressively. My understanding with PCR is that it can pick up even fragments of the virus (even asymptomatic shedding), so I was a bit surprised when they came back negative.

What are your thoughts on Valtrex working at first, and then not working at all? Last October, I had suffered with an outbreak for weeks, with new blisters appearing every day. At the end of the month, I finally caved and saw a doctor for some Valtrex, and the blisters cleared within days and didn’t reappear until the end of November. I took Valtrex again at the end of November, and it cleared again. It just seems really coincidental for it to clear after taking Valtrex if it’s not herpes. When I had an outbreak again in January, I decided to take Valtrex suppressively, and that’s when things spiraled out of control. The outbreak actually got worse while I was on suppressive therapy. Since then, it hasn’t worked when I’ve taken it for outbreaks.

Can this virus mutate (like bacteria) and become resistant to medications? If this is herpes, knowing that I suffer from outbreaks this frequently will be devastating. But knowing that there are no medications that can provide any sort of relief will leave me absolutely hopeless. Honestly, this has me questioning whether or not I should have a child, because I feel contagious 100% of the time. How could I raise a child with outbreaks all the time and not give it to them?

[Terri Warren]

I want you to take a swab when the blister is brand new not healing. If you are getting new blisters almost every day, then this should be very easy to do.
Yes, the virus can become resistant to medication. So the first step is to find out, via PCR, if these blisters are herpetic. We need that definitive diagnosis. Then the next step would be to have someone locally gather a culture from a new blister, not a PCR, and ask for resistance testing to be done on the sample.

Please don’t give up hope. If this is herpes there are other more potent drugs available but ones that we would not want to use unless truly necessary as they have the potential for more side effects. Just keep going through the steps to sort this out.

Terri

[Anon789]

Thanks, Terri! I’ll plan on sending swabs in soon.

[Anon789]

Apologies, Terri, but my mind is racing now. How common is drug-resistant HSV in immunocompetent patients? I’ve found a lot of studies on HIV/AIDS/immunocompromised patients, and it sounds like drug resistance is much more common in that case. How many immunocompetent patients have you treated at your clinic, who have chronic herpes outbreaks that are resistant to medications?

[Terri Warren]

drug resistant HSV is RARE. It accounts for about 0.3 percent of samples evaluated and it is as common in people who have taken HSV meds as those who have not. It is far more common (about 5.2% of samples) in people who are HIV infected. I have yet to see a person with drug resistant herpes in 33 years of practice.

Terri

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