Recurrent symptoms, WB Sensitivity

[Pebbles]

Dear Terri,

I have “moved on” after seeking past phone consultation but it is very hard to have hope quashed by returning symptoms—I would say the pattern is appearing to be once every 18 months roughly.

I want to ask about the negative blood tests.

I had Herpeselect and Western Blot both over a year after what may have been primary symptoms (also two neg cultures within 48 hours, for what they are worth).

I have tried to find out as much as I can about the WB in terms of sensitivity, particularly for HSV1. The Herpeselect insert has sensitivity of WB vs culture as 97% on a sample of 38 (37/38) and a 1987 article bu Ashley et al has 94% (16/17). A lab tech I spoke to at Washington University *suggested* sensitivity at 94% and the ASHA website cites you as saying about 93%–which seems rather low . . .

I really dwell on the test sensitivity as it is all that I have—thankful for negatives, but depression sets in with recurrent symptoms that are very very hard to dismiss.

Questions;

1. My Herpeselect was 0.01 HSV1 and 0.04 HSV2. I understand that there is no simple correlation between numbers and infection (being above or below the threshold the important thing), but are numbers this low in any way revealing or particularly “confirmatory”?

2. Literature says we know very little about those who fail to seroconvert (false negatives) as it is complex to pursue, but is there any information (anecdotal or other) that suggests reasons?

What about analogous blood tests for other viruses? What tends to be the reason for non-seroconversion/false negs?

In your own experience, do you see any possible patterns at all?

3. If one produces IGG for other viruses (example: celiac sprue, mumps, measles) would that be an indication one is likely to produce the appropriate IGG response as used on the Herpes tests?

4. Finally, there are quite a few people like me who only have the percentages to work with and fret over the various figures, but I was wondering—on a day-to-day basis, what is the “reality” for you and others you know of around false negatives? Is it a reality for you? Or is it something that in practice doesn’t enter into things?

The sensitivity of mid 90% seems a bit low to me–I hope it is higher.

Many thanks

[Terri Warren]

1. My Herpeselect was 0.01 HSV1 and 0.04 HSV2. I understand that there is no simple correlation between numbers and infection (being above or below the threshold the important thing), but are numbers this low in any way revealing or particularly “confirmatory”?

These are very definitely nice low scores – I have no concerns that these are negative results.

2. Literature says we know very little about those who fail to seroconvert (false negatives) as it is complex to pursue, but is there any information (anecdotal or other) that suggests reasons?

None that I am aware of, no.

What about analogous blood tests for other viruses? What tends to be the reason for non-seroconversion/false negs?

In your own experience, do you see any possible patterns at all?

I don’t see any patterns at all in the very very few patients I have seen that have not seroconverted, no.

3. If one produces IGG for other viruses (example: celiac sprue, mumps, measles) would that be an indication one is likely to produce the appropriate IGG response as used on the Herpes tests?

I don’t know the answer to that. And I’m not sure it is relevant either.

4. Finally, there are quite a few people like me who only have the percentages to work with and fret over the various figures, but I was wondering—on a day-to-day basis, what is the “reality” for you and others you know of around false negatives? Is it a reality for you? Or is it something that in practice doesn’t enter into things?

Well, it is a reality for me in that I have had 9 people who have had this experience. Is that what you are asking me? Are you asking me as I look at western blots am I concerned that they are missing lots of people? No.

If you have something going on every 18 months, very infrequent, I would suggest that you obtain PCR swabs and when you get one of these episodes, swab any lesions present yourself right away and get the swabs back to the lab. You can talk with your provider about this option or our clinic patients can also do this. If you do this, and the PCR swab is negative, then it will be time for you to start believing you have done your absolute best to sort this out and have determined that the best of everyone’s ability, you are negative. At some point, you just have to go with what is known.

Terri

[Pebbles]

Well, I suppose that is kind of disappointing. I live in limbo, and it is painful. If I could put my occasional flare-ups down to something else, or fully trust the testing, I could move on.

I’ll probably take up the suggestion ordering the swabs of the PCR, although it will be even harder to move on with the thought of that in the background. But I think it makes sense.

I guess I feel a little disappointed in the WB, or at least the not having an idea of why some people might not perform on it for HSV1 in particular since it seems to test for some many different “strands.”

Given my testing history, what are the odds that I have the virus and it wasn’t detected by the tests?

[Terri Warren]

I think the odds are really low, honestly. If I were you, I would live with the test results as reality, and if I developed some kind of lesion, I would have PCR swabs on hand to get it swabbed right away. Letting something that happens once every 18 months guide your life too much, in the face of negative tests, may not be the best way to life a happy life. You are bound by the reality of the testing available. That’s true for all of medicine, actually! When you may or may not have a condition that the majority of the US population has, things could honestly be worse. You might want to take a step back and try to view your situation from a more objective position. I think it might help.

Terri

[Pebbles]

Terri

In one post you state a 10-20% false neg for HSV1, 97% for HSV2 and it seems you are referring to the Western Blot. I had assumed that these numbers applied to the Herpeselect elisa, and WB was significantly better for HSV1?

[Terri Warren]

These numbers do apply to the ELISA, not the western blot, correct. Yes, the western blot if significantly better at detecting HSV 1 than the ELISA and a little better at detecting HSV 2 is enough time has passed (16 weeks from exposure). If I typed something else, that was an error on my part, sorry about that.

Terri

[Author]

Posts