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Negative HSVII test results 3 years after diagnosis?!!!!
Dear Dr
I was diagnosed with HSV2 (genital) three years ago. I went to the gynecologist immediately upon noticing lesions on my labia which Iooked like insect bites (which I had never experienced before) following intercourse with a new partner. I had no fever, lymphadenopathy, pain, etc. At first, the doctor was skeptical due to the mildness of the symptoms. Results of blood test and culture for HSVI and HSV2 were:
“HSVI (IGG) positive 4.552 Index (pos=>1.0) ( I have had oral herpes for 18 years)
HSVII (IGG) negative 0.190 Index (pos=>1.0)
The significance of this result depends on the clinical context. Rising antibody level is more significant. Suggest testing a second sample in 1-2 weeks”
Swab culture results (from the same lab) were:
“ Herpes Simplex Antibodies special pathology
Herpes simplex Typ I/II Detected Type II
Sample type Green swab”
Based on the swab test results, he diagnosed a newly contracted HSVII infection as I had suspected. He dissuaded me from undergoing further tests stating the accuracy of swab tests. I suffered from outbreaks of blisters every once in a while for the first two years but have not had any for over a year. I did not require antivirals. What I did end up requiring was psychiatric counseling and anti-depressants for a whole year whilst trying to come to terms with my diagnosis. My partner denied having any disease and claimed to be "clean".
I have just been to the doctor for a my annual check up and requested a full STD screening (L12). I also asked for an IGG herpes blood test just to be sure. The results came back today and are NEGATIVE for HSVII after 3 years!!!!. I did not get retested for HSVI. I am very confused. We are told that swab tests are rarely wrong. How can I be sure of what I have/don’t have?. This new doctor says that it must have been a genital HSVI infection and not HSVII. As far as I know, if you already have it (orally in my case), you cannot get it again on another part of the body. My only guess is that my partner had genital HSVI and given that I had had a bikini wax the day before we had intercourse, I had small tears on the skin and that’s how the virus entered the new site– a scenario similar to self-inoculation. Is this possible?.
What do I do now?. Should I ask for the test to be repeated? Shall I ask for an HSVI Igg as well?. If that also turns out negative, it would confirm lab error. Both doctors are board certified and very competent.The one who initially diagnosed me has retired so I cannot follow up with him. I am waiting for the results of my recent STD swab test from London. Although, I believe that if I wasn’t shedding virus when he took the swab, HSVII will probably not show up on the results. It has never showed up on any of my pap smears either.
Please, advise me on next steps and what I need to verify with the doctor. Is it possible that I don’t have genital herpes but some other misdiagnosed/undiagnosed disease?. Could it have been something else which my body has now cleared?. Please help. I need to know what I have.
My apologies for the lengthy explanation but wanted to give you the full picture.
I was diagnosed with HSV2 (genital) three years ago. I went to the gynecologist immediately upon noticing lesions on my labia which Iooked like insect bites (which I had never experienced before) following intercourse with a new partner. I had no fever, lymphadenopathy, pain, etc. At first, the doctor was skeptical due to the mildness of the symptoms. Results of blood test and culture for HSVI and HSV2 were:
“HSVI (IGG) positive 4.552 Index (pos=>1.0) ( I have had oral herpes for 18 years)
HSVII (IGG) negative 0.190 Index (pos=>1.0)
The significance of this result depends on the clinical context. Rising antibody level is more significant. Suggest testing a second sample in 1-2 weeks”
Swab culture results (from the same lab) were:
“ Herpes Simplex Antibodies special pathology
Herpes simplex Typ I/II Detected Type II
Sample type Green swab”
Based on the swab test results, he diagnosed a newly contracted HSVII infection as I had suspected. He dissuaded me from undergoing further tests stating the accuracy of swab tests. I suffered from outbreaks of blisters every once in a while for the first two years but have not had any for over a year. I did not require antivirals. What I did end up requiring was psychiatric counseling and anti-depressants for a whole year whilst trying to come to terms with my diagnosis. My partner denied having any disease and claimed to be "clean".
I have just been to the doctor for a my annual check up and requested a full STD screening (L12). I also asked for an IGG herpes blood test just to be sure. The results came back today and are NEGATIVE for HSVII after 3 years!!!!. I did not get retested for HSVI. I am very confused. We are told that swab tests are rarely wrong. How can I be sure of what I have/don’t have?. This new doctor says that it must have been a genital HSVI infection and not HSVII. As far as I know, if you already have it (orally in my case), you cannot get it again on another part of the body. My only guess is that my partner had genital HSVI and given that I had had a bikini wax the day before we had intercourse, I had small tears on the skin and that’s how the virus entered the new site– a scenario similar to self-inoculation. Is this possible?.
What do I do now?. Should I ask for the test to be repeated? Shall I ask for an HSVI Igg as well?. If that also turns out negative, it would confirm lab error. Both doctors are board certified and very competent.The one who initially diagnosed me has retired so I cannot follow up with him. I am waiting for the results of my recent STD swab test from London. Although, I believe that if I wasn’t shedding virus when he took the swab, HSVII will probably not show up on the results. It has never showed up on any of my pap smears either.
Please, advise me on next steps and what I need to verify with the doctor. Is it possible that I don’t have genital herpes but some other misdiagnosed/undiagnosed disease?. Could it have been something else which my body has now cleared?. Please help. I need to know what I have.
My apologies for the lengthy explanation but wanted to give you the full picture.
one option is to look into daily pcr swabbing for a month or two to see if hsv2 is detected. Terri Warren, our herpes expert here on medhelp, takes on phone consult patients to do things like this with and since you don't need to know exact days when you are shedding, just if you are or not, her clinic should be able to arrange for this to be done for you for a few hundred dollars ( I know, not cheap even doing it the "cheap" way ). Her website is the westover heights clinic and the contact info is there. I believe it's $25 for each 5 minutes of consultation.
Hi Grace
Here's the latest update:
I just received the repeat HSV Igg results from the lab that originally did them (and the swab test):
"HSV1 Igg Positive 4.308 Index (pos=>1.0)
HSV2 Igg Negative 0.594 Index (pos=>0.9)
Serological evidence of HSV infection at some time"
Just to recap, these were the blood test results from the same lab in 2008:
“HSVI (IGG) positive 4.552 Index (pos=>1.0)
HSVII (IGG) negative 0.190 Index (pos=>1.0)
The significance of this result depends on the clinical context. Rising antibody level is more significant. Suggest testing a second sample in 1-2 weeks”
My HSV1 results have reduced from 4.552 (in 2008) to 4.308. My HSV2 stands at 0.594 vs 0.19 (in 2008).
I was told verbally by the lab that the swab test (done in 2008) was a PCR test. The lab offered to get its doctors to comment on all the test results (from 2008 and 2011) once the latest ones came through.
I have updated Dr Hunter as well. Am so baffled. Don't know what any of this means anymore. My Dr said you don't have HSV2 - end of story. You know how it is with some doctors, you can't tell them:"well, I have read such and such on the websites" (even if they are expert websites).
I just want to know for sure what is going on with me....
Regards
Here's the latest update:
I just received the repeat HSV Igg results from the lab that originally did them (and the swab test):
"HSV1 Igg Positive 4.308 Index (pos=>1.0)
HSV2 Igg Negative 0.594 Index (pos=>0.9)
Serological evidence of HSV infection at some time"
Just to recap, these were the blood test results from the same lab in 2008:
“HSVI (IGG) positive 4.552 Index (pos=>1.0)
HSVII (IGG) negative 0.190 Index (pos=>1.0)
The significance of this result depends on the clinical context. Rising antibody level is more significant. Suggest testing a second sample in 1-2 weeks”
My HSV1 results have reduced from 4.552 (in 2008) to 4.308. My HSV2 stands at 0.594 vs 0.19 (in 2008).
I was told verbally by the lab that the swab test (done in 2008) was a PCR test. The lab offered to get its doctors to comment on all the test results (from 2008 and 2011) once the latest ones came through.
I have updated Dr Hunter as well. Am so baffled. Don't know what any of this means anymore. My Dr said you don't have HSV2 - end of story. You know how it is with some doctors, you can't tell them:"well, I have read such and such on the websites" (even if they are expert websites).
I just want to know for sure what is going on with me....
Regards
1 Comments
What in the world? Neither of the tests indicate you have HSV-2. Both say negative and both values are significantly less than the 1.0 positive cut off. I don't understand why you are concerned about HSV-2. Your tests clearly indicate you have not tested positive for HSV-2.
Do you understand what (pos=>1.0) means? Do you understand that both 0.594 and 0.19 are less than (pos=>1.0)?
Do you understand what (pos=>1.0) means? Do you understand that both 0.594 and 0.19 are less than (pos=>1.0)?
gee no ob present in your latest pap test was helpful to know for the big picture of all of this eh? ( that was sarcasm )
Hi Grace
I finally got a response from the lab which I have posted for Dr H as well:
"I have looked at the results from 2008 and the most recent result and from these results you can interpret that this patient has no current HSV infection in the thinprep sample.
Unfortunately, I can't comment on the patients' most recent Igg results as they were not performed by us. Our previous antibody result were positive which shows that the patient has had an HSV infection in the past, which conforms to both the current and previous HSV PCR results. You will have to confirm the new igg results with the lab that performed them and perhaps they can comment further".
I was not satisfied with this response as it did not answer the question about the swab test. I assume that the "past hsv infection" they are referring to is because of my initial blood test with them which showed positive for HSV1 and negative for HSV2. I called the lab and they suggested I send them a blood sample for testing to compare with the previous results (which I have already done). I was told that they would then get the doctors to look at all the tests and comment. The test results are not yet back. However, the person I spoke to (not a doctor) said that my swab test would have been tested by PCR even in 2008.
I think I mistakenly said I was going to do PCR tests - what I meant was another igg blood test at the overseas lab that did my swab and recent sexual health tests which I have done and am waiting for the results. Will let you know.
Regards
I finally got a response from the lab which I have posted for Dr H as well:
"I have looked at the results from 2008 and the most recent result and from these results you can interpret that this patient has no current HSV infection in the thinprep sample.
Unfortunately, I can't comment on the patients' most recent Igg results as they were not performed by us. Our previous antibody result were positive which shows that the patient has had an HSV infection in the past, which conforms to both the current and previous HSV PCR results. You will have to confirm the new igg results with the lab that performed them and perhaps they can comment further".
I was not satisfied with this response as it did not answer the question about the swab test. I assume that the "past hsv infection" they are referring to is because of my initial blood test with them which showed positive for HSV1 and negative for HSV2. I called the lab and they suggested I send them a blood sample for testing to compare with the previous results (which I have already done). I was told that they would then get the doctors to look at all the tests and comment. The test results are not yet back. However, the person I spoke to (not a doctor) said that my swab test would have been tested by PCR even in 2008.
I think I mistakenly said I was going to do PCR tests - what I meant was another igg blood test at the overseas lab that did my swab and recent sexual health tests which I have done and am waiting for the results. Will let you know.
Regards
no you won't get herpes lesions the next day from a newly acquired infection. now if you had herpes prior to that and it was just a recurrence, that can occur.
Hi Grace
Me again!. I'm still waiting for the lab to respond to the e-mail sent by my doctor's office. I find it odd that they haven't responded since Feb 13. It was a simple question of how the swab was tested. Do they have the right to withhold information?. I'm feeling something is not right here.
Also, I saw in one of your responses to "honesty" that herpes doesn't produce immediate symptoms. In my case, I had symptoms ( 2 sores) the very next day after the encounter which is why I went to the doctor within the first few days of noticing them to get them swabbed.
As I said, I had waxed a day or two before the encounter and the skin was broken - it stung when I urinated (before the encounter). I initially thought it may be a reaction to the waxing or maybe molloscum contagiousum (my friend got that on her arms once after a wax job - not at the same salon). But I feared the worst and went to see the dr. However, I did have recurrences for about two years which I'm pretty sure were herpetic lesions.
Could herpes produce these immediate results?. I'm so frustrated and keep mentally kicking myself for taking everything I was told as the gospel truth and not getting swabbed when I had subsequent attacks.
Regards
Me again!. I'm still waiting for the lab to respond to the e-mail sent by my doctor's office. I find it odd that they haven't responded since Feb 13. It was a simple question of how the swab was tested. Do they have the right to withhold information?. I'm feeling something is not right here.
Also, I saw in one of your responses to "honesty" that herpes doesn't produce immediate symptoms. In my case, I had symptoms ( 2 sores) the very next day after the encounter which is why I went to the doctor within the first few days of noticing them to get them swabbed.
As I said, I had waxed a day or two before the encounter and the skin was broken - it stung when I urinated (before the encounter). I initially thought it may be a reaction to the waxing or maybe molloscum contagiousum (my friend got that on her arms once after a wax job - not at the same salon). But I feared the worst and went to see the dr. However, I did have recurrences for about two years which I'm pretty sure were herpetic lesions.
Could herpes produce these immediate results?. I'm so frustrated and keep mentally kicking myself for taking everything I was told as the gospel truth and not getting swabbed when I had subsequent attacks.
Regards
you do not want to get pcr blood testing!!! herpes is not blood borne so having a pcr blood test for it is a waste of money!!
bv always brings on a recurrence of me. anything that normally gives you a vaginal infection? lol
bv always brings on a recurrence of me. anything that normally gives you a vaginal infection? lol
1 Comments
Wait. Whenver you have bacterial vaginosis, you get a recurrence of HSV-2? or HSV-1?
Hi Grace
Thanks for your message.
The blood test I did was Igg for HSV2 (didn't bother with HSV1). The test was done by EIA method. I am going to get a PCR blood test if the lab says that the swab was not tested by PCR/culture in 2008. If the PCR blood test results turn out to be negative for HSV2, would that make a difference? Is that why you ask?. Is that going to be the determining factor?.
The full STD test I just did was swab by PCR .It included HSV1 and HSV2 (both negative) of course, I know that if I wasn't shedding at the time, it won't show up.
When I asked my dr about the discrepancy between the swab and the recent IGG blood test, he said maybe the virus just stayed on the skin, caused an outbreak and didn't enter the blood or my immune system fought it off - but this doesn't explain the recurrences.
We'll just have to wait and see. In the meantime, do you have any tips for inducing an outbreak?. LOL!!!
Thanks for your message.
The blood test I did was Igg for HSV2 (didn't bother with HSV1). The test was done by EIA method. I am going to get a PCR blood test if the lab says that the swab was not tested by PCR/culture in 2008. If the PCR blood test results turn out to be negative for HSV2, would that make a difference? Is that why you ask?. Is that going to be the determining factor?.
The full STD test I just did was swab by PCR .It included HSV1 and HSV2 (both negative) of course, I know that if I wasn't shedding at the time, it won't show up.
When I asked my dr about the discrepancy between the swab and the recent IGG blood test, he said maybe the virus just stayed on the skin, caused an outbreak and didn't enter the blood or my immune system fought it off - but this doesn't explain the recurrences.
We'll just have to wait and see. In the meantime, do you have any tips for inducing an outbreak?. LOL!!!
if you were charged twice, email the medhelp moderators about it and they can clear that up for you.
yes it turned out a good thing that HHH emailed me about my responses to your post on the patient to patient forum - he missed the recurrences part of your post and it certainly changed his response to you about your situation. continuing to follow up with HHH on this gets you your money's worth :)
of course now that you are waiting for a recurrence to repeat your culture, murphy's law says you won't have one forever....lol.
your herpes blood test isn't pcr blood testing is it?
yes it turned out a good thing that HHH emailed me about my responses to your post on the patient to patient forum - he missed the recurrences part of your post and it certainly changed his response to you about your situation. continuing to follow up with HHH on this gets you your money's worth :)
of course now that you are waiting for a recurrence to repeat your culture, murphy's law says you won't have one forever....lol.
your herpes blood test isn't pcr blood testing is it?
Dear Grace
Thanks for your response re the spinal tap.
Firstly, please let me say that I did not mean to imply that I was not satisfied with your response and then posted to the Dr. From the outset, I intended to send my query to the dr but it got posted on the forum - and I am very happy that it did and grateful for your advice. In all likelihood I do have hsv2 and after 3 years of research, I had never heard that the some people test negative despite having had it for a long time. Your response to me and the e-mail exchange between you and the Dr has proved invaluable in guiding me. So, thank you for this.
I actually got charged twice for one question because the internet connection dropped out!.
I have paid a lot of money for all these tests and consultations with specialists over the years and it looks like I have no choice but to continue to do so - out of my pocket- in order to get a conclusive answer. What choice do I have?.
Thanks once again for your help and I will keep you all posted of any developments.
P.S.: The full STD tests came out negative (all by PCR) - just noticed that HPV was not tested. Will have to go back and pay AGAIN for this!!!.
Thanks for your response re the spinal tap.
Firstly, please let me say that I did not mean to imply that I was not satisfied with your response and then posted to the Dr. From the outset, I intended to send my query to the dr but it got posted on the forum - and I am very happy that it did and grateful for your advice. In all likelihood I do have hsv2 and after 3 years of research, I had never heard that the some people test negative despite having had it for a long time. Your response to me and the e-mail exchange between you and the Dr has proved invaluable in guiding me. So, thank you for this.
I actually got charged twice for one question because the internet connection dropped out!.
I have paid a lot of money for all these tests and consultations with specialists over the years and it looks like I have no choice but to continue to do so - out of my pocket- in order to get a conclusive answer. What choice do I have?.
Thanks once again for your help and I will keep you all posted of any developments.
P.S.: The full STD tests came out negative (all by PCR) - just noticed that HPV was not tested. Will have to go back and pay AGAIN for this!!!.
Thanks. I have been following your thread with Dr. H on the STD Experts forum as well. You have me curious as well. :-)
Hi
Sorry I didn't respond. I didn't see your response. I haven't quite got the hang of the site yet.
I don't live in Europe that is why the test was sent overseas. The Dr was not clear on the wording of my test so on his advice, I have asked my doctor to contact the lab and ask exactly what test was done on the swab and if it was PCR or not. Actually, the recent full STD test results came back from the same lab and each and every test has (PCR) written next to it. So maybe (as Dr H says) it was not a culture or PCR that they did back in 2008. They should respond in a couple of days.
I'm not on therapy and haven't had an outbreak for a good year now. I guess now I have to hope and pray that I will get one soon. And yes, the dr is a bit weary from all my enquiries and now an investigation into the tests. He says I don't have it and should forget about it. I however, believe that I need to know for sure what type I have. It's a terribly confusing situation.
I am not trying to convince myself that I don't have herpes, I just want to make sure which type. I'll take type 1 over type 2 anyday.
I will let you and grace know what happens - if I ever get to the bottom of this.
Regards
Sorry I didn't respond. I didn't see your response. I haven't quite got the hang of the site yet.
I don't live in Europe that is why the test was sent overseas. The Dr was not clear on the wording of my test so on his advice, I have asked my doctor to contact the lab and ask exactly what test was done on the swab and if it was PCR or not. Actually, the recent full STD test results came back from the same lab and each and every test has (PCR) written next to it. So maybe (as Dr H says) it was not a culture or PCR that they did back in 2008. They should respond in a couple of days.
I'm not on therapy and haven't had an outbreak for a good year now. I guess now I have to hope and pray that I will get one soon. And yes, the dr is a bit weary from all my enquiries and now an investigation into the tests. He says I don't have it and should forget about it. I however, believe that I need to know for sure what type I have. It's a terribly confusing situation.
I am not trying to convince myself that I don't have herpes, I just want to make sure which type. I'll take type 1 over type 2 anyday.
I will let you and grace know what happens - if I ever get to the bottom of this.
Regards
no, a pcr of spinal fluid isn't going to help diagnose you.
you paid to post to the std experts. follow up with them and get your money's worth.
you paid to post to the std experts. follow up with them and get your money's worth.
A swab having to be sent overseas? That is interesting. I have not heard of that the UK has some good testing places.
The PCR I doubt will show anything in the spinal fluid. Herpes hides in the nerve roots. Which means it isn't blood bourne. But the blood tests can be trusted but when someone has a positive culture it trups the blood test because there is (small) few that won't test positive. But having HSV-2 most people have a few outbreaks a year.
The Western Blot won't be an option because the blood would have to be sent to the US. It is hard to argue with a doctor but he may not know herpes well. It's a pickle I will admit but that swab being positive is a hard thing to argue against. I would say try the WB but even that may miss it. But again its not really an option because you are not in the US.
Sadly the only thing that can be advised is take the precautions of having HSV-2. If your on therapy cease it and when an outbreak happens be seen within 24-48hrs for a lesion culture.
The PCR I doubt will show anything in the spinal fluid. Herpes hides in the nerve roots. Which means it isn't blood bourne. But the blood tests can be trusted but when someone has a positive culture it trups the blood test because there is (small) few that won't test positive. But having HSV-2 most people have a few outbreaks a year.
The Western Blot won't be an option because the blood would have to be sent to the US. It is hard to argue with a doctor but he may not know herpes well. It's a pickle I will admit but that swab being positive is a hard thing to argue against. I would say try the WB but even that may miss it. But again its not really an option because you are not in the US.
Sadly the only thing that can be advised is take the precautions of having HSV-2. If your on therapy cease it and when an outbreak happens be seen within 24-48hrs for a lesion culture.
Hi
Thanks for your response. Have a look at my response to Grace.
Even the doctor said to me today "you don't have it" and this is a board certified, US trained specialist. I'll have to ask if they have Western Blot as I don't live in the US. Will check.
Tks
Thanks for your response. Have a look at my response to Grace.
Even the doctor said to me today "you don't have it" and this is a board certified, US trained specialist. I'll have to ask if they have Western Blot as I don't live in the US. Will check.
Tks
Hi Grace
Thank you for your response. I didn't know that some people test negative even if they are positive. So effectively, blood tests can't be trusted?.
My swab culture had to be sent overseas for testing. Could this have affected anything?
Got my blood test result today : it is showing absolutely zero for HSV2, not even borderline. Was an EIA test and Igg not Igm. I could wait for years before an another outbreak happens.
Is the only other option open to me a PCR from spinal fluid?. All these tests are costing me a lot of money as insurance doesn't pay but I want to get to the bottom of it.
Thank you very much anyway.
Thank you for your response. I didn't know that some people test negative even if they are positive. So effectively, blood tests can't be trusted?.
My swab culture had to be sent overseas for testing. Could this have affected anything?
Got my blood test result today : it is showing absolutely zero for HSV2, not even borderline. Was an EIA test and Igg not Igm. I could wait for years before an another outbreak happens.
Is the only other option open to me a PCR from spinal fluid?. All these tests are costing me a lot of money as insurance doesn't pay but I want to get to the bottom of it.
Thank you very much anyway.
There is a small percentage of folks who won't test accurately on the herpes blood tests. You evidently are one of them. The + hsv2 lesion culture trumps the negative blood testing every time. It's the only way we can accurately diagnose the small percentage of folks who don't test accurately on the blood tests. Even though you are testing accurately for hsv1, doesn't mean that you are going to test accurately for hsv2.
If you really need the peace of mind of a 2nd + test, the best you can do is wait for a return of symptoms, be seen within 48 hours for a lesion culture and go from there. Recurrences shed less virus than the initial ob does so getting a pcr swab is probably the best course of action.
grace
If you really need the peace of mind of a 2nd + test, the best you can do is wait for a return of symptoms, be seen within 48 hours for a lesion culture and go from there. Recurrences shed less virus than the initial ob does so getting a pcr swab is probably the best course of action.
grace
As you already know the swab test is really accurate and the only TRUE false positive is lab error. The swab test is far more false negative than false positive.
With that being said the challenge here is that our blood testing can miss 1 out of 10 HSV infections. So it could have been the blood test not finding a detectable amount of antibodies or a failure on the test itself.
A swab with no active symptoms is likely to yield no infection due to the virus not being active on the skin at the time. Therefore this shouldn't be a trusted test.
HSV is a life infection you will never get rid of it. You could repeat your IGG test but that is not a 100% answer you are in fact negative it could just be the test not finding a detectable amount of antibody in your system which some people will never test positive. I would say you could go through and take a Western Blot but in your case you aren't in the US it appears. If I am wrong please do correct me.
With that being said the challenge here is that our blood testing can miss 1 out of 10 HSV infections. So it could have been the blood test not finding a detectable amount of antibodies or a failure on the test itself.
A swab with no active symptoms is likely to yield no infection due to the virus not being active on the skin at the time. Therefore this shouldn't be a trusted test.
HSV is a life infection you will never get rid of it. You could repeat your IGG test but that is not a 100% answer you are in fact negative it could just be the test not finding a detectable amount of antibody in your system which some people will never test positive. I would say you could go through and take a Western Blot but in your case you aren't in the US it appears. If I am wrong please do correct me.
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