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Confusing Facts and Information - HELP!
Hi Dr. H! I tested a month ago positive for HIV-2 with a Herpes Select Test with a reading of 2.8 in a routine health exam. We repeated the test (same manufacturer) and it came back at 2.9. My doctor indicated that I had been exposed a LONG (years) time ago and that's all the result meant. I've never had a symptom, an ache, a blister, a rash...no symptoms at all and my life has VERY stressful (death of a godson, moving, losing a job) and peanuts and chocolate are two big favorites that 've eaten on a regular basis...you'd think one big blister.I've been doing lots of research and came across a study at www.ncbi.nlm.nih.gov/pmc/articles/PMC1276011/ - Use of biokit HSV-2 Rapid Assay to improve the positive predictive value regarding the Herpes Select test and the finding that readings are not reliably positive unless 3.5 or higher. Curiosity piqued, I made an appointment with my doctor and took the forum thread (answered by Dr. Handsfield) and a copy of the NIH Journal article/study to my doctor and her response was that she didn't believe it. I asked for a confirmatory test of either the BiokitUSA test or the Western Blot. Her response was that Herpes Select was very reliable and that she'd never heard of the BiokitUSA (and didn't know where to get it) and that the Western Blot was outdated. I persisted. She seemed offended. Long story short, it's not going to happen w/o a fight...and I've obviously ruined the dr/pt relationship by trying. Can you refer me to a specialist in So. California that you know is well educated in both the latest develop & the disease? I feel like my doctor wants to give me Valtrex and send me on my way...before I make a decision I want to know for certain I have HSV-2. Your thoughts and input would be greatly appreciated. My 2nd ? is that if I'm asymptomatic,how do I know when I'm contagious since I don't have prodromal symptoms (tingling etc) to rely on...and definitely no blisters...any advice would be very appreciated!
MEDICAL PROFESSIONAL
I knew that. My fingers make the HSV/HIV (or HPV/HIV) typo all the time. I have alarmed the occasional forum user because of it!
MEDICAL PROFESSIONAL
Welcome to the forum.
I'm sorry to hear of the trouble you are having with your doctor about your HSV results and confirmatory testing. Thanks for doing some research about it. I can confirm you correctly understand the truth, as we have described it in this forum -- and Dr. Hook and I stand by the information we have provided. Western blot is definitely not "outdated"; it remains the ultimate gold standard in HSV antibody testing. (It indeed is an older technology than HerpeSelect and other EIA tests -- but that's not the same as being outdated.) Further, the BiokitUSA test does indeed appear to serve as a reasonable substitute for confirmatory testing. Should you wish to continue the dialog with your (former?) doctor, you could refer her to this study: http://www.ncbi.nlm.nih.gov/pubmed/16225691
Now to the more important issue: do you have HSV-2? I'm afraid the answer is yes, very probably you do. As you apparently already realize, the result is not solid unless the HerpeSelect numerical result is 3.5 or higher. However, the large majority (90% or more) with results of 2.8-2.9 probably are valid; and having two results in the same range also suggests it is real. I'm not saying you should not have a confirmatory test, either Biokit or Western blot; given your concern and uncertainty, it should be done. But you should be prepared for it to confirm as positive.
Another aspect of your physician's understanding of herpes (or your understanding of what she said) is the statement that your test only shows "exposure" to HSV-2. If your result is confirmed, you are infected. There is no such thing as a positive antibody test without active infection. She is also apparently mistaken (again, assuming you understood) about how long you have been infected. There is no way from a blood test result to judge the duration of HSV-2. It could be anywhere from a couple of months to many years.
Assuming you indeed have HSV-2, I am afraid there is no way to know when you are and are not contagious. However, if you have had the infection for 10 years or more, it is likely that asymptomatic shedding -- i.e. periods of infectiousness -- may be infrequent.
So there's a mix of good news and bad news (I assume) for you. At this point, my advice is to seek a physician to will order a confirmatory test -- and who might understand genital herpes more completely than your current doctor apparently does. One approach would be to call your local or state medical society and see if they can help you locate a gynecologist who also specializes in infectious diseases. Such specialists often can be found in association with medical schools or major medical centers.
Anyway, I hope this has helps. Good luck with it-- HHH, MD
I'm sorry to hear of the trouble you are having with your doctor about your HSV results and confirmatory testing. Thanks for doing some research about it. I can confirm you correctly understand the truth, as we have described it in this forum -- and Dr. Hook and I stand by the information we have provided. Western blot is definitely not "outdated"; it remains the ultimate gold standard in HSV antibody testing. (It indeed is an older technology than HerpeSelect and other EIA tests -- but that's not the same as being outdated.) Further, the BiokitUSA test does indeed appear to serve as a reasonable substitute for confirmatory testing. Should you wish to continue the dialog with your (former?) doctor, you could refer her to this study: http://www.ncbi.nlm.nih.gov/pubmed/16225691
Now to the more important issue: do you have HSV-2? I'm afraid the answer is yes, very probably you do. As you apparently already realize, the result is not solid unless the HerpeSelect numerical result is 3.5 or higher. However, the large majority (90% or more) with results of 2.8-2.9 probably are valid; and having two results in the same range also suggests it is real. I'm not saying you should not have a confirmatory test, either Biokit or Western blot; given your concern and uncertainty, it should be done. But you should be prepared for it to confirm as positive.
Another aspect of your physician's understanding of herpes (or your understanding of what she said) is the statement that your test only shows "exposure" to HSV-2. If your result is confirmed, you are infected. There is no such thing as a positive antibody test without active infection. She is also apparently mistaken (again, assuming you understood) about how long you have been infected. There is no way from a blood test result to judge the duration of HSV-2. It could be anywhere from a couple of months to many years.
Assuming you indeed have HSV-2, I am afraid there is no way to know when you are and are not contagious. However, if you have had the infection for 10 years or more, it is likely that asymptomatic shedding -- i.e. periods of infectiousness -- may be infrequent.
So there's a mix of good news and bad news (I assume) for you. At this point, my advice is to seek a physician to will order a confirmatory test -- and who might understand genital herpes more completely than your current doctor apparently does. One approach would be to call your local or state medical society and see if they can help you locate a gynecologist who also specializes in infectious diseases. Such specialists often can be found in association with medical schools or major medical centers.
Anyway, I hope this has helps. Good luck with it-- HHH, MD
**Correction** Sorry I meant tested positive for HSV-2 (not HIV2)!
MEDICAL PROFESSIONAL
I just re-read your original question. Southern California is loaded with academic medical centers (UCSD, UC Irvine, UCLA, USC, etc). All have superb herpes expertise in their infectious disease, gyn, or other clinics; and there are excellent private providers with herpes expertise as well.
MEDICAL PROFESSIONAL
Welcome back. Sorry about the bad news. As suggested, I predicted wrong -- but that's why WB is done, to remove uncertainty.
You are now asking the main questions of concern to almost all people found to have asymptomatic HSV-2. Unfortunately, it is not possible to predict the frequency of asymptomatic viral shedding or when and if there might be transmission potential. You need to assume you have at least some subclinical shedding, since almost everyone does; and therefore there is some potential for transmission to partners. Antiviral therapy reduces but does not entirely eliminate viral shedding. On average, the transmission risk is reduced by at least 50%, but in many persons it's probably a lot better than that. The combination of antiviral therapy and consistent condom use is highly effective in most persons -- probably 90% effective over the long term.
An important strategy for the future, especially if and when you enter into a likely long-term relationship, is for your partner to be tested. If already HSV-2 infected, that person will be immune to a new infection and no precautions will be necessary. If negative, then you and he (or she) will know that precautions are necessary. On the other hand, some partners may not be concerned about it. Indeed, since genital herpes is often mild or entirely asymptomatic (as you now know!), in committed relationships -- i.e. when there is no immediate concern about putting still other partners at risk -- some couples don't worry all that much about prevention.
At this point, you need to find a health care provider who understands genital herpes and its prevention. You may need to call around. In the meantime, the MedHelp herpes community forum is an excellent resource. The moderators are highly experienced herpes counselors, and many participants are in exactly your situation.
Sorry again for the bad news. But it's not the end of the world. Almost all persons with HSV-2 can have rewarding sex lives and romance. In the long run, all will be well. Good luck with it.
You are now asking the main questions of concern to almost all people found to have asymptomatic HSV-2. Unfortunately, it is not possible to predict the frequency of asymptomatic viral shedding or when and if there might be transmission potential. You need to assume you have at least some subclinical shedding, since almost everyone does; and therefore there is some potential for transmission to partners. Antiviral therapy reduces but does not entirely eliminate viral shedding. On average, the transmission risk is reduced by at least 50%, but in many persons it's probably a lot better than that. The combination of antiviral therapy and consistent condom use is highly effective in most persons -- probably 90% effective over the long term.
An important strategy for the future, especially if and when you enter into a likely long-term relationship, is for your partner to be tested. If already HSV-2 infected, that person will be immune to a new infection and no precautions will be necessary. If negative, then you and he (or she) will know that precautions are necessary. On the other hand, some partners may not be concerned about it. Indeed, since genital herpes is often mild or entirely asymptomatic (as you now know!), in committed relationships -- i.e. when there is no immediate concern about putting still other partners at risk -- some couples don't worry all that much about prevention.
At this point, you need to find a health care provider who understands genital herpes and its prevention. You may need to call around. In the meantime, the MedHelp herpes community forum is an excellent resource. The moderators are highly experienced herpes counselors, and many participants are in exactly your situation.
Sorry again for the bad news. But it's not the end of the world. Almost all persons with HSV-2 can have rewarding sex lives and romance. In the long run, all will be well. Good luck with it.
Hi Dr. Handsfield....
I hope your Thanksgiving was wonderful!
I wanted to return to the board to let you know that I received my Western Blot results and they showed positive. :( Results: Positive for antibody to HSV-2 by Western blot. Negative for antibody to HSV-1. Evidence of past infection with HSV-2....
I have to move forward, however, I'm so confused about when I would would asymptomatically shedding since I have NO symptoms at all and have never had a primary outbreak that I'm aware of. Since I don't have outbreaks, I don't know when are safer times to have sex. (protected at all times of course). I'm concerned about how to even reassure a partner that I'm safe, since I have absolutely no idea when I might be having an outbreak since no symptoms ever have presented. Does taking suppressive therapy stop all viral shedding? Am I safe if I'm using condoms and suppressive therapy? Now more confused than ever ...can you provide any guidance for me? I'd appreciate any input you have, please. :)
Thanks so much!
I hope your Thanksgiving was wonderful!
I wanted to return to the board to let you know that I received my Western Blot results and they showed positive. :( Results: Positive for antibody to HSV-2 by Western blot. Negative for antibody to HSV-1. Evidence of past infection with HSV-2....
I have to move forward, however, I'm so confused about when I would would asymptomatically shedding since I have NO symptoms at all and have never had a primary outbreak that I'm aware of. Since I don't have outbreaks, I don't know when are safer times to have sex. (protected at all times of course). I'm concerned about how to even reassure a partner that I'm safe, since I have absolutely no idea when I might be having an outbreak since no symptoms ever have presented. Does taking suppressive therapy stop all viral shedding? Am I safe if I'm using condoms and suppressive therapy? Now more confused than ever ...can you provide any guidance for me? I'd appreciate any input you have, please. :)
Thanks so much!
MEDICAL PROFESSIONAL
Thanks for the thanks. Glad to have helped.
Thanks so much. I will do just that. I appreciate all your help and guidance. You've given me a peace of mind that I'm taking the right steps. I'll be sure to swing back and let you know how it goes. It will be a minute (as you know, I'm sure). :) Again, thank you...you do a great service here.
MEDICAL PROFESSIONAL
If your IgG index value had been lower than 2.9, I would consider the Biokit result negative. And probably it is -- i.e. most likely you do NOT have HSV-2. However, given the possible faintly positive result with Biokit, I don't think it is possible to know with 100% certainty whether or not you have HSV-2. A Western blot would sort it out. It's a somewhat expensive test (around $150, I believe) but probably worth doing in this circumstance. The WB is done at the University of Washington clinical laboratory in Seattle, but any lab will know how to forward a specimen to them.
Oh and P.S. The circle on the left showed up bright pink showing that the test was administered correctly. That might be important information to know. :)
Hi Dr. H....
I had the confirmatory testing with the HSV2 Biokit Rapid Response yesterday as we discussed last week. It came back with a faint circle only viewable with a magnifying glass. My doctor said that if he weren't looking with a magnifying glass he would have said it was negative. There was no pink tinge to the circle just they very faintest outline. He said he was going to call Biokit and ask about valuations, but that I should consider it a positive result. He'd never had a test present like that apparently...he said usually the dot is pink and much brighter.
What say you in your experience with the test? Any thoughts?
Thank you in advance for your help!!!!
I had the confirmatory testing with the HSV2 Biokit Rapid Response yesterday as we discussed last week. It came back with a faint circle only viewable with a magnifying glass. My doctor said that if he weren't looking with a magnifying glass he would have said it was negative. There was no pink tinge to the circle just they very faintest outline. He said he was going to call Biokit and ask about valuations, but that I should consider it a positive result. He'd never had a test present like that apparently...he said usually the dot is pink and much brighter.
What say you in your experience with the test? Any thoughts?
Thank you in advance for your help!!!!
Thank you so much! I will be back in touch after confirmatory testing. :)
MEDICAL PROFESSIONAL
I have to assume the other thread you mention contained information in addition to the test result, affecting my judgment (or Dr. Hook's) that the questioner had HSV-2.
The numerical values of the HSV blood tests are only roughly indicative of antibody levels. There is no good explanation of why some results appepar stronger than others, but if the result is truly positive (over 3.5 or confirmed by another test), the level makes no difference, i.e. no correlation with duration of infection, frequency of outbreaks, or risk of transmission.
As for your "natural routine": sorry to disappoint, but lysine, vitamins, diet, etc do not "bolster the immune system" and make no difference in controlling herpes. However, you do not need to worry about kidney disease or any other health problems from valacyclovir, which rarely causes side effects of any kind; it is among the safest drugs in routine use and many, many people have taken it for years without problems. As for protecting your partner, the combination of consistent condom use valacyclovir is highly effective; the transmission chance is greatly reduced, although not eliminated entirely.
Finally, and unfortunately, it is difficult to know the actual rate of asymptomatic viral shedding in any particular person with HSV-2. However, you might want to contact the Westover Heights Clinic, Portland, OR (the owner/director is Terri Warren, who moderates MedHelp's herpes forum) (www.westoverheights.com). WHC can help arrange for testing for asymptomatic shedding. The outcome isn't precise, but sometimes it is helpful. However, you shouldn't take this step unless and until your HSV-2 infection has been confirmed by WB, Biokit, etc.
I'll be happy to comment further if you would like to let me know the result of an HSV-2 confirmatory test.
The numerical values of the HSV blood tests are only roughly indicative of antibody levels. There is no good explanation of why some results appepar stronger than others, but if the result is truly positive (over 3.5 or confirmed by another test), the level makes no difference, i.e. no correlation with duration of infection, frequency of outbreaks, or risk of transmission.
As for your "natural routine": sorry to disappoint, but lysine, vitamins, diet, etc do not "bolster the immune system" and make no difference in controlling herpes. However, you do not need to worry about kidney disease or any other health problems from valacyclovir, which rarely causes side effects of any kind; it is among the safest drugs in routine use and many, many people have taken it for years without problems. As for protecting your partner, the combination of consistent condom use valacyclovir is highly effective; the transmission chance is greatly reduced, although not eliminated entirely.
Finally, and unfortunately, it is difficult to know the actual rate of asymptomatic viral shedding in any particular person with HSV-2. However, you might want to contact the Westover Heights Clinic, Portland, OR (the owner/director is Terri Warren, who moderates MedHelp's herpes forum) (www.westoverheights.com). WHC can help arrange for testing for asymptomatic shedding. The outcome isn't precise, but sometimes it is helpful. However, you shouldn't take this step unless and until your HSV-2 infection has been confirmed by WB, Biokit, etc.
I'll be happy to comment further if you would like to let me know the result of an HSV-2 confirmatory test.
Thank you so much for your quick response. While hopeful, I am not optimistic, but I want to proceed with good decisions. Once I get my head around all of it, I want to be an advocate for the disease since there is so much conflicting information out there and to be honest, it's emotionally devastating. To me, it's a big deal...and not to be taken lightly.
I am a little confused as another thread I read, the guy had a 2.60 result and that placed him in the middle of the gray area and you said that most likely he did not have Herpes? Is there a difference in men and women? Did it also affect your opinion since he had HSV-1?
I would still like to receive a confirmatory test just to be sure that I'm not in the 10% that might be negative. I'm grateful that I do not suffer as some people do with it. I know that I've had to have it for quite a while as I've not been with anyone for almost three years prior to being tested. Is the test result indicative of antibody levels? I see so many people that say they test in the 6 and 7's and some even higher...I want to understand everything...I'm a curious george so to speak. Oh and can having chicken pox or mono (I had both as a child) affect the test result?
In the meantime while I've been researching, I've started an natural based routine of Lysine, Vit C and Olive Leaf to help bolster my immune system. I'm concerned that the antiviral suppressants might cause kidney and liver damage. I cannot seem to find consistent information about that either. Do you have an opinion? What course of treatment would you suggest to a patient like myself that is asymptomatic? How do I know how to protect my partner? Of course, I realize that condoms and an antiviral will help...but what kind of risk am I looking at in subjecting a partner to risk? Is it 3% of days out of the year that I may be shedding? Where do I find the CORRECT facts and statistics about Herpes? I've put hours and hours into research to understand and track down the right information.
You've been so helpful to me, and I hope that I'm not offending you by asking too many questions. I need to know the right facts.
And, yes, I believe that my doctor is going to be former....I need my Doctor to be a partner with me in whatever health challenges I face...I didn't mean to offend her, I thought she'd be thrilled that I was interested. I'm disappoint because I did think very highly of her.
Sorry, to be so wordy, but I've been agonizing over what to do next...
Thanks so very much for your kind response and information. :) Knowing the truth and the correct facts will help me better take care of myself and eventually a partner (I hope).
I am a little confused as another thread I read, the guy had a 2.60 result and that placed him in the middle of the gray area and you said that most likely he did not have Herpes? Is there a difference in men and women? Did it also affect your opinion since he had HSV-1?
I would still like to receive a confirmatory test just to be sure that I'm not in the 10% that might be negative. I'm grateful that I do not suffer as some people do with it. I know that I've had to have it for quite a while as I've not been with anyone for almost three years prior to being tested. Is the test result indicative of antibody levels? I see so many people that say they test in the 6 and 7's and some even higher...I want to understand everything...I'm a curious george so to speak. Oh and can having chicken pox or mono (I had both as a child) affect the test result?
In the meantime while I've been researching, I've started an natural based routine of Lysine, Vit C and Olive Leaf to help bolster my immune system. I'm concerned that the antiviral suppressants might cause kidney and liver damage. I cannot seem to find consistent information about that either. Do you have an opinion? What course of treatment would you suggest to a patient like myself that is asymptomatic? How do I know how to protect my partner? Of course, I realize that condoms and an antiviral will help...but what kind of risk am I looking at in subjecting a partner to risk? Is it 3% of days out of the year that I may be shedding? Where do I find the CORRECT facts and statistics about Herpes? I've put hours and hours into research to understand and track down the right information.
You've been so helpful to me, and I hope that I'm not offending you by asking too many questions. I need to know the right facts.
And, yes, I believe that my doctor is going to be former....I need my Doctor to be a partner with me in whatever health challenges I face...I didn't mean to offend her, I thought she'd be thrilled that I was interested. I'm disappoint because I did think very highly of her.
Sorry, to be so wordy, but I've been agonizing over what to do next...
Thanks so very much for your kind response and information. :) Knowing the truth and the correct facts will help me better take care of myself and eventually a partner (I hope).
You are reading content posted in the STDs Forum
Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
