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Dear Terry,
I would like to consult with you on whether I should trust the negative results I obtained on two blood tests and a culture test for HSV I had done over a year ago or whether I should request my doctor to perform new tests. Here is what happened:
For a number of years, once in a while I have been getting what looks like pimples in my genital area–very much like the ones that you would get on your face. When I consulted on this with my gynecologist, he indicated that I should not worry, that these were probably skin lesions that appeared due to stress. So I let it be, but then when I moved into a new town I consulted with my new gynecologist and she indicated that just in case I should have an Herpselect ELISA blood test run to discard the chance that it could be herpes. I have never had unprotected sex and I have had very few sex partners, so I did not think much of the test–I figured it would be negative. Then the results came back: negative for HSV-1 (value: 0.19), positive for HSV-2 (value: 1.47). My gynecologist immediately put me on .5 grams of daily Valtrex solely on the basis of the blood test, without a physical examination and without considering my sexual history. Later on when I was having one of the lesions that I sometimes get she examined it and said it was definitely herpes. After she put me on .5 grams of Valtrex I would still get these skin lesions once in a while, so she double the dosage to 1 gram a day. After that, I would still get these same lesions once in a while. Many months after this diagnosis, I got your book, “The Good News about the Bad News” and a couple of other books and I learned that given the low-positive value on my ELISA test my gynecologist should have performed a confirmatory test. I returned to her office to request that a second test be performed and she sent me to see an specialist in infectious diseases. The infectious diseases specialist did not hesitate to run a second ELISA test for HSV-2, which came back negative (value: 0.04). After I had that test performed I stopped taking Valtrex. Then after that I got a skin lesion like the ones I sometimes get, so I payed the infectious diseases specialist another visit. He performed a physical examination and said that it was not a herpetic lesion, that it was just a bump, probably a bartholin cyst. The lesion looked very much like the lesion I had which my gynecologyst had said was definitely herpes. The infectious disease specialist also performed a culture on the lesion (an ELVIS HSV shell vial assay) and it came back negative. He also ordered a Herpselect Immunoblot blood test for HSV 1 and 2, and it came back negative for both. So to recap, when the infectious disease specialist performed the ELISA test for HSV-2 I was still on 1 gram daily dosage of Valtrex and I had been on Valtrex, initially on .5 grams and later on 1 gram, for a total of 11 months. When I had the culture done and the blood drawn for the Immunoblot test I had been off Valtrex completely for approximately 10 days. The specialist in infectious diseases indicated that these symptoms are just benign lesions of the skin, that sometimes liquid accumulates in that area given that we have a number of glands, but that I am not infected with herpes simplex. Since then I have had these lesions physically examined by a dermatologist and a different gynecologist from the one who made my first diagnosis and they also agree with the infectious disease specialist that these are not herpetic lesions, that they could be either fordyce spots or cysts of the sebaceous glands. However, given that I had been taking Valtrex for a very long time when the second ELISA test was performed and that I had been off Valtrex for approximately 10 days when the Immunoblot and the culture tests were performed, I wonder whether I should trust the negative results or whether I should have confirmatory tests done. Both my gynecologist and the infectious disease specialist indicated I should not worry and that I am not infected with herpes simplex. I definitely trust them but I know how much of a minefield herpes diagnosis can be, so I would still like to consult with you on this. Please advice. Thank you!
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I have some concerns about you taking Valtrex for almost a year and then testing quite soon afterwards. I think it is very likely that you are not infected because your history just doesn’t fit with having herpes very well.
How long have you been off Valtrex now?
Do you have any information about the herpes status of the partner you last had sex with?Terri
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You could definitely rely on testing done a year out from Valtrex taking, yes. You could have had a low positive because you were seroconverting (going form negative to positive). That’s why I think a follow up test is important. We want to absolutely rule that out. From my read, you were only 10 days off Valtrex at the time of the last blood draw, is that right?
Terri
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That’s correct, your doctor’s office cannot order a western blot for you anymore. You can get a test kit from UW and have your doctor draw the blood and send it back to them with the kit or our clinic can order the test at a Quest lab near you. The immunoblot is not better than the ELISA and in fact, in my opinion, gives far more confusing results. It would be good to request a swab test of a lesion but instead of culture, you should request a PCR test, far more sensitive.
I don’t think there are peer reviewed articles referring to delayed seroconversion with antivirals, this is something we all just know based on the science of antiviral medicines. If you reduce the amount of virus present, you reduce the ability of the immune system to see it and make an antibody response.
I believe we have completed your initial question and two follow up questions. If you have more questions, please feel free to renew your subscription.
Terri
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Great news!
You are most welcome.Terri
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1) Yes
2) We don’t know why some people get false positives. Also, it is possible that you have HSV 1 infection and it is simply not showing up in the screening ELISA because the test misses 1-2 out of 10 HSV 1 infections.
3) Likely not
4) That is no possible for me to know without knowing many other things about you, like your age, your race, your ethnicity, the age, race and ethnicity of all of your partner. And honestly, even if you gave me all of that, I am not willing to take the time to review all of the literature and make some statistical calculation. My math isn’t that good and it would take hours and hours of time.
5) noIf you question your antibody test results, I would strongly encourage you to get a herpes western blot antibody test. It is more sensitive for HSV 1. I think you can be comfortable that you don’t have HSV 2, but the western blot looks for both
After the time has passed since your negative results, you are still thinking about this, and I think maybe the western blot would help you feel more reassured.Terri
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1) My insurance won’t cover the Western blot. How much would the total cost of ordering it with your clinic be when paying out of pocket? And what is the procedure?
The cost is $250 total. The include the consultation with our clinic to become a patient of ours and the cost of the test itself.
2) Can sleep deprivation have any effect on the result of herpes anti-body tests?
No
3) Is Valtrex the only thing that can cause a false-negative result for herpes antibody tests?
Well, the test is only as good as the package insert says it is so it does miss a few infections inherently in the test, but yes, other than that, to my knowledge, antiviral medicine is the only thing that can make an antibody test look negative when it is positive.
4) I read online that the performance data for Herpselect Immunoblot and ELISA compared to Western Blot for sexually active adults is the following:
Immunoblot: HSV1: Sensitivity= 99, Specificity= 95; HSV2: Sensitivity=97, Specificity=98
ELISA: HSV1: Sensitivity= 91, Specificity= 92; HSV2: Sensitivity= 96, Specificity= 97
Is this information accurate?I believe my latest data is 97% sensitive for HSV 2, but other than that, yes, that is correct.
5) Does “compared to Western Blot” mean that, for example, if the Western Blot has a sensitivity of 99.9 for HSV1, the ELISA will be sensitive to 91 cases out of the 99.9 that the Western Blot picks up, and if Western Blot has a specificity of 99.9, the ELISA will be specific for 92 of the 99.9 cases that the Western Blot detects?
Yes
5) What is the incidence of false negatives for the ELISA and Immunoblot tests more than 1 year out from Valtrex?
No higher than if you had not taken Valtrex
6. It is normal to have variation in index values.
8. No
9. Yes, I believe it was a false positive.
Terri
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I’m glad the site was helpful for you. Thanks so much
Terri
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I believe you have asked the most questions of anyone ever using this forum!
1) As it turns out, the lab that runs the tests for my doctor’s clinic does not have the capability to run PCR tests. This means that the request that my doctor put in for me (see question #8 in my previous post) will be taken as a request for an ELVIS test, as it is the only swab test for herpes that the lab can run. I’ve had two ELVIS tests done before (see question #6 above), but they were done on bumps, never on pimples (see question #9 above), so never in an area of skin where material like puss, blood, fluid, etc. could be visibly swabbed. My question is: should I get the ELVIS done the next time I get a lesion given that the PCR is not an option for me?
You could, but if the western blot is negative I don’t think you need to.
2) How accurate is the ELVIS test? What is the specificity and sensitivity of this test? What percentage of the test are false positives? What percentage of it are false negatives?
The ELISA picks up 97% of HSV 2 and 80-90% of HSV 1. in the low positive range, 1.1 to 3.5, 50% of the positives are false positives. You can do the math on the false negatives. Most happen as a result of testing too quickly after infection.
3) Provided the ELVIS is negative, do you think it would be medically necessary for me to get a Western blot done? (see my testing history in question #6 above)
I would do that the other way around – western blot first, skip the swab tst.4) Given that the PCR is not available for me, do you think it would be medically necessary for me to get a Western blot done? (see my testing history in question #6 above)
See answer above.
5) Given that I cannot corroborate the results of my herpes antibody tests with a PCR (see my testing history in question #6 above), do you still believe that my first positive test for HSV2 was a false positive or do you think there is a need for further testing to confirm the subsequent negative results?
You don’t need to confirm with a PCR. You just need a western blot and then believe the results.
6) Can you get oral herpes from sharing utensils, such as knives, forks, spoons, glasses, etc. and/or food with someone who has oral herpes but no visible cold sores?
extremely unlikely7) Can you get oral herpes from sharing utensils, such as knives, forks, spoons, glasses, etc. and/or food with someone who has oral herpes and visible cold sores?
extremely unlikely8) Can you get oral herpes by being in contact with the saliva of someone who has oral herpes?
yes9) Can you get oral herpes by kissing on the mouth someone who has oral herpes but no visible cold sores?
yes10) Can you get oral herpes by having someone who has oral herpes but no visible cold sores kiss you on the cheek?
no11) Can you get genital herpes from sharing towels with someone who has oral and/or genital herpes but no visible cold sores/blisters or ulcers?
extremely unlikely – never have heard of or seen12) Can you get genital herpes from sharing towels with someone who has oral and/or genital herpes and visible cold sores/blisters or ulcers?
same as 1113) Can you get genital herpes by being in contact with the body fluids of someone who has genital herpes?
yes14) Can you get genital and/or oral herpes from inanimate objects that were in contact with the skin of someone who has oral and/or genital herpes? What is the likelihood of this happening if the skin had herpetic lesions? What is the likelihood of this happening if the skin did not have herpetic lesions?
Sex toys and lipsticks, perhaps, other wise no.15) Is skin-to-skin contact the only possible way to get oral and/or genital herpes?
see 14
16) What is the likelihood that someone could get herpes in places other than the mouth, fingers, breasts, or genitals when being in contact with the skin of someone who has oral and/or genital herpesvery very low
?
17) What is the likelihood that someone who has genital herpes but no visible blisters/ulcers would self-inoculate by using the same towel they used to dry their genitals to dry their face?
zero, unless it is within the first four months of infecction18) What is the likelihood that someone who has genital herpes and visible blisters/ulcers would self-inoculate by using the same towel they used to dry their genitals to dry their face?
see 1719) What is the likelihood that someone who has oral herpes but no visible cold sores would self-inoculate by using the same towel they used to dry their face to dry their genitals?
see #1720) What is the likelihood that someone who has oral herpes and visible cold sores would self-inoculate by using the same towel they used to dry their face to dry their genitals?
see #17All these questions about autoinoculation are extremely low risk and only would happen within the first four months after infection. All the questions about transmission through inanimate objects are close to zero. I never say never.
These are my final answers on this subscription.
Terri
Thanks so much again! -
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Sorry, yup, mixed that up.
The culture (the ELVIS) misses about 50-75% of positives that the PCR picks up. We have no better test than the PCR so if you are going to ask me about the sensitivity of that, I don’t know.Terri
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What state do you live in?
Terri
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We can order you a western blot in Pennsylvania, I’m quite sure. Did you hear back from the research department?
Terri
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You are most welcome, glad it all worked out.
Terri
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