Likelihood of False Negative HSV2 Blood Test

[cantletgo2013]

Hi Terri,
Long story, looking forward to your insight. For additional details, here are threads between both Grace & HHH & myself: http://www.medhelp.org/posts/Herpes/Test-Results----What-to-believe/show/1892363, http://www.medhelp.org/posts/STDs/HSV2-antibody-development/show/2031798#post_9603438.

2x unprotected oral (2 separate occasions) & 1x unprotected vaginal sex in 8/07, with well-known acquaintance. He’d no visible symptoms & believed he’d no STDs. Neither he nor his regular partner have had herpes symptoms. He’d had STD testing in the past, but I’m unsure if specifically for HSV2. Not certain when I began to notice symptoms, but I’m sure I didn’t have a classic initial outbreak — I think I’d remember something that sounds so awful, though I know it isn’t always. My 1st recollection of having anything unusual was in mid-’09, but perhaps as early as ’08. I truly don’t remember. It was in ’10 that I began to get concerned. Had 1st type-specific IgG blood test (I think Herpeselect) 1/11 w/ negative results (both <0.91, don’t have #s) & again 8/13 (Liaison, I think) w/ values of HSV1 0.05, HSV2 0.11. No history of cold sores.

I get what seem to me like pimples or cysts (def. not blisters or ulcers), several x/month, on both sides of the midline, in both the inner and outer labia, mainly one at a time, ongoing for at least the last 5 years. Most of the time I can squeeze yellowish pus out, but there are times when they can’t be expressed. In the last year I have developed frequent nerve pain, in rear & back of legs, both sides, and also muscle spasms, which I understand aren’t a prodrome. It may be genitally-focused anxiety, but I feel like there’s tingling too.

What I really want to talk about is false negative blood tests & your thoughts about them. HHH says it’s rare not to produce detectable antibodies, but that it’s been known to happen. I wonder if this is what I’m experiencing.

Thanks for your thoughts. This forum helps so much mentally.

[Terri Warren, RN, Adult Nurse Practitioner]

Definitely classic symptoms - obvious blisters in the genital area.  

Terri

[cantletgo2013]

Hi Terri,
One last question, and I will refrain from any further unless I decide to get PCR or culture done. Of the 9 patients who tested positive by PCR or culture but negative on the WB, generally speaking, were their symptoms very mild or atypical, as I believe mine are, or did they have more classic symptoms, i.e. blisters, ulcers, scabs, burning, etc.?

Thank you for this final answer.

[Terri Warren, RN, Adult Nurse Practitioner]

Yes, it will  However, I think if you had say four negative PCR swabs from the areas you are concerned about, and that shouldn't take too long given the frequency that you describe, you would be even more reassured.

Terri

[cantletgo2013]

Well, honestly, I've read in here many times that only a positive PCR (or culture) is accurate. A negative result can still be in question due to testing time error. I do think having one negative would help, but I really don't want to be in the vicious cycle of going for a PCR every time something pops up. Getting the WB has helped me a lot because it's just another confirmation, and a strong one at that. I know the likelihood of being in this false negative WB population is very small -- I've roughly estimated this group of your patients to be about .1%, based on 9 out of about 25/mo for 32 years. Tiny to be sure. I suppose at this point for me it's all psychological, but I do hold a lot of confidence in your experience and judgement that you don't believe my symptoms warrant further testing. If I still have trouble, I'll consider this as a last resort. Will this thread remain open if I end up having additional results to report? Thank you for all of your time and guidance. You've been so helpful.

[Terri Warren, RN, Adult Nurse Practitioner]

I am aware that you have never had a PCR swab test, yes.  I am describing the population that we have identified as false negative western blots.  
Honestly, I don't think you need a swab test but if it would help you to believe the western blot, then I don't see a down side if you could then believe that result.  I know you say you would like to put this behind you but it appears that even with a western blot you are being successful at that.  Would doing a swab test that is negative help you believe the blood test?

Terri

[cantletgo2013]

Thanks for your insight, Terri. I want to make sure, though, that you know that I've never been PCR swabbed. I only mention this because your first paragraph confused me a little. I've only ever had negative blood tests, including WB. Having said that, and at the risk of you having to repeat yourself, would you say my symptoms warrant getting PCR so I can be sure I'm not in the aforementioned group? I'm only asking because I have questionable symptoms at all, albeit seemingly not typical. Honestly, I'd rather the WB is sufficient enough. And please believe me when I say that I want nothing more than to put this all behind me and move on. I desperately want the WB results to be the catalyst for that.

Thanks again. You and your staff have all been very patient with me.

[Terri Warren, RN, Adult Nurse Practitioner]

You are not in the group of people who test positive and test negative on the western blot.  the group that I described to you all had positive PCR swabs many more than once.  and there are so few of them!

I hope you can take these test results and restart your life, knowing you don't have herpes.  

Glad my office could be of help.  Now the burden is on you to accept this news and believe it.  If you don't, you've wasted valuable time and money.

Terri

[cantletgo2013]

Hi Terri,
After 4 years of worry, fear, and self torment, at your encouragement I finally broke down and got the Western Blot. Had my blood draw on 4/29 and received the results yesterday, 5/9. I'm cautiously happy to report that BOTH the HSV I and II results were negative. I'm not sure who I spoke with, maybe a nurse (I don't think it was Dr. Taulbee), but when she gave me my results, she also said that none of the symptoms I reported are due to HSV, based on the results. So after 2 negative type-specific IgGs, and 1 negative WB, do you think this is enough for me to cease all self-examining/worry/testing/question asking? Or do you still recommend that I get a PCR?

My consult w/ Dr. Taulbee on 4/25 was quite relieving, as I told her about my ongoing (for years) symptoms (although later I realized that I failed to mention that I also have questionable pains in my lower back, rear, and back of thighs), and she said, as did you, Grace, and Dr. HHH, that they don't sound like herpes. She also said that if I was her patient, she would not advise me to test with the WB, but that she's also a big believer in "peace of mind" and that if I thought these results would help me move on and if I could believe them, that I should do it. So I did. And I was so glad, especially after your last explanation of the difference b/w WB and IgG testing, to hear that I was negative for both.

So given all of the results, my symptoms, and exposure, do you think there's still a chance that I'm in the minuscule group of people who never test positive yet still have HSV?

Thanks again for your time and insight -- greatly appreciated.

[Terri Warren, RN, Adult Nurse Practitioner]

The western blot looks for the entire panel of antibody proteins to HSV 2, not just a single protein  as the ELISA test does so it is more likely to pick up the infection than the screening test.  Most people with herpes do have that single protein, but a few don't so that's why the western blot picks up more cases than the ELISA - two to three more cases out of 100 than the ELISA.

As I said before, I seriously doubt that you have herpes.

I said I wouldn't answer any more posts until you've tested further.  Now I'm going to enforce that.

Terri  

[cantletgo2013]

Hi Terri,
I've been thinking a lot about everything you've said and am definitely considering calling your office this week to order the Western Blot. Money isn't so much an issue as logistics and having to give out so much personal information are -- thus far I've been able to test anonymously, which has been a great relief. Anyway, beyond all that, I do have a quick question that I hope you'll answer. IF I indeed do not produce IgG antibodies, how will getting a WB make any difference? Does it test for other things besides the traditional IgG? I just don't want to spend the money and go through all the trouble that this is going to pose for me if in the end the test only picks up IgG. Finally, I couldn't really tell in your previous answers what your clinical assessment of my particular situation is, based on my exposure, symptoms, and test results. I understand going forward what it is that you believe I should do, but I'm not clear what your opinion is of the facts of my situation.

Thanks again for your continued help.

[Nervouswait]

I remember your post from a while back. It was so sad, as I was going through a similar situation. And I am a woman as well, so I understand you completely.t short story...one time encounter with a fool who wouldn't or couldn't test for HSV. Bad situation which ended me up positive for chlamydia 3 days later. A week goes by after 1st md visit and she calls with my positive chlamydia result. I was asymptomatic until that point. The day I heard I was positive for that, I convinced myself I was positive for something else, and my symptoms started. For SIX MONTHS I have had vagibal symptoms. Burning, itching, tingling, sciatic pain, nausea, general skin irritation. Week 1 negative for HSV 2. Week 9, Negative for HSV 2 (at that point md offered anxiety meds). Symptoms still present. Week 16, negative for HSV2, symptoms still present. At week 20 I decided to stop. To finally just stop, I was exhausted. If I started thinking HSV, I distracted myself. I cut ties with people I talked about it with. I stayed off the Internet...within one week, all symptoms gone. 4 weeks later, all symptoms remain gone. At that point I called Terri's clinic, spoke with Dr.Tolbee and set up a WB. Still asymptomatic at this point. Went to a quest lab and had blood drawn. Guess what my results were??? They were negative and my symptoms are still gone. For your own sake, spend the $200 ($50 for phone consult and $150 for test) and have it done. Pay a bill late if you have to. Actually, they will bill you for the WB. Quest doesn't accept cash up front for it. Have it drawn and be done. Your symptoms are all anxiety, just like mine were. They will disappear if you have a conclusive answer!!!!!

[Terri Warren, RN, Adult Nurse Practitioner]

If you arrange your test through our office, there is a minimal consult fee, yes, and we arrange for you be to drawn at a Quest lab near you and the sample will be shipping to the UW lab.  Or you can arrange this directly through UW.  You would need to have your blood drawn by someone who provides you with medical care and blood drawing services.

Terri

[TiminBoston]

[phone]  

Call the UW Virology clinic.  They'll help you get set up with the WB.

[cantletgo2013]

Thank you, Terri. How much does the Western Blot cost? Would I need to pay a consult fee to both your office and the cost of the test?

[Terri Warren, RN, Adult Nurse Practitioner]

I have had 9 patients in 32 years who are negative on the western blot and positive by swab, not just any blood test.  There is a difference.  I have seen people who test negative on ELISA who test positive by western blot, yes, but not very often for HSV 2.  Mostly HSV 1.  

My final thought on this is that you should pull together your person strength, find the money and get a western blot!  For heavens sake, if the past several years, how many cups of coffee have you purchase?  You could probably have acquired several western blots!  You've got yourself all tied up in knots because you don't have the courage to find out what is really going on with your own body.  OK, you can't count on that guy to test.  Period. End of discussion.  But you can take your own future into your own hands here!  

In the 9 people that I have seen who produce no detectable antibody by western blot, their frequency of recurrence is no different than the general population of people with herpes.  I feel like you have built this whole reality of your own about your skin lesions and it probably has nothing to do with reality.  I hate to sound harsh, but my goodness, girl!  Solve your problems.  Find the money to do PCR.  Get a western blot.  When it is all negative, move on.  Life is so short, believe me, I feel it more and more these days.  If you are thinking about something five times a day, this is pretty much classic OCD thinking.  

In addition, the law requires that now you have health insurance.  Quest labs will bill your insurance for the western blot.  You might have to pay for part of it yourself, but so be it.

This is my final post on this thread until you have western blot or PCR test results to share with me.  I feel like continuing to write to you about this is only making me complicit in this situation.

Terri

[cantletgo2013]

*Hearing both you and Dr. HHH think I should trust the results I've already gotten would probably be as definitive as I can allow myself. You both seem like serious authorities on this subject.

Thanks again.

[cantletgo2013]

Hi Terri,
Thank you so much for your response. Sorry for the delay on my end. To answer your first questions, no, I haven't had any of those things done. Mainly due to financial and logistical limitations, and probably fear of the result. As for the past partner, he has been aware of my issues, and I've asked him to get a blood test, but he has not been open to it. Unfortunately, to answer the question of what would make me feel more certain, ultimately it would be if he had a test. I know the likelihood of us both not producing detectable antibodies is minute. It is very disappointing that I've told him the torment I've suffered all these years, but he won't take this simple step. He's a selfish guy, but not surprising, actually. And since he has no symptoms, he doesn't go through the issues that I do.

Is the reason you're asking if I've had those things done because you think I need to based on my symptoms, or was it simply to offer me suggestions for more definitive answers?

As for your last question, yes, this has been a horrible way to live my life. I think I've made myself sick in other ways because of the worry and anxiety. I think about this pretty much 5 min after I wake up and throughout the day until I go to bed. I examine myself almost every time I use the restroom. Especially when I feel symptoms.

I know this is something I should get some counseling for, but because this is something I'm going through alone, that's not really an option. The only way I find myself getting through all of this has been through prayer.

In your experience, how likely is it to not produce detectable antibodies? I've seen you say that in your 32 years of practice, you've only seen 9 people who swab tested positive but blood tested negative. My understanding is that people who don't produce detectable antibodies shouldn't bother with a western blot, because they won't be picked up on that either.

Is there any correlation between not producing detectable antibodies and increased outbreaks or severity? I thought that the reason I'm getting whatever it is so frequently may be because I don't produce antibodies.

I know my symptoms aren't typical, but are there any presentations that are similar to mine? Like I said, most of the time I can express the "pimples," and the few that I can't could possibly be irritated glands.

Finally, in the end, do you think I should just trust my test results and move on? My second test, however, was not Herpeselect but Liaison. Does that make it less reliable? I've seen it assessed on ASHA's website and it seems like one that's ok to use. Hearing both you and Dr. HHH think this, would probably be as definitive as I can allow myself.

Thanks so much for all you do on here. It's so appreciated.

[Terri Warren, RN, Adult Nurse Practitioner]

I seriously doubt that is what is happening to you.  Really.  
What would make you feel more certain that you are not infected?  Have you had swab tests of these lesions that are not pus filled?  Have you had a herpes western blot?  Has that partner been tested for herpes since?  

To be worrying about this since 2007 is quite a burden, yes?  How many times a day, if every day, do you think about this?  

Let me know what you would consider definitive evidence that you are not infected and how many times a day you think about this, maybe I can help you sort out what to do next.

Terri