Wow, what a mess. Yes, the UW should have both blots still. I would ask your provider to call them and ask that they be read in comparison. It may be necessary to send another blood sample. I would also ask your provider to send you home with swabs for you to gather at the first sign of any outbreak anywhere. It sounds like you got some bad test results, and if I were them, I would be bending over backwards to try to help you sort this out. You may also want to get that arm lesions still swabbed, bacterial culture as well.
Terri
To clarify,
To clarify,
The recent cold sore on my lip was swabbed and the PCR culture was negative but it was initially reported to me as being positive. As for the final blood test, the blood was drawn before I took the anti-viral medication. The antiviral medication has not seemed to improve or speed the healing of the blister on my arm. It has been 10 days and it is still an open sore.
Nurse Warren,
Thank you for your help. I am still very confused about my HSV status. As stated above 3 weeks ago I had a “cold sore” on my lip. I called and spoke to my PCPs assistant and was told that the PCR found HSV DNA. Two weeks later I developed some blisters on my arm and My PCP thought that they were HSV. He did not swab them because he felt the visual diagnosis was enough and that given the high rate of false negatives for swabs, a positive result would only confirm his DX and a negative would not change it. He gave my anti-viral meds to take. When I had the cold sore he gave me an order for a herpesselect blood test that I had not filled. When I left his office I went and had the blood drawn. It came back negative for HSV1 and HSV2 both values were less than .90.
When I received my results I went to my PCP to get a copy of my PCR culture that the medical assistant said was positive. I was shocked to find that she had read it wrong and my PCP had never reviewed the results. It stated no HSV1 or HSV2 DNA found!
So to recap…
I had negative herpes-select (IGG) results for HSV1 and 2 at 6, 9, and 11 weeks. A positive herpes-select (IGG) for HSV1 at 15 weeks with a value of 3.6. A negative Western blot for HSV1 and 2 at 16 weeks. An indeterminate western blot with “an atypical reactivity to HSV1 proteins” at 8 months and a negative herpes-select (IGG) at 10 moths for HSV 1 and 2. And the 2 PCR cultures of oral lesions that I have had have been negative.
So were does this leave me? Will the U of W Lab still have my samples to compare? The first in Nov and the second in Jan. I think I would like to consult with you. How do I make this happen.
Hmmm. Does the UW know that you had two samples sent for evaluation? If not, your provider needs to call them and tell them and ask them to compare the two blots for HSV 1. In addition, if you ever get another lesion, make certain it gets swabbed. That was a missed opportunity, for sure, and though I am totally in favor of saving money for health care and avoid unnecessary testing, this was not unnecessary. You have conflicting test results, and you need to get clear about what the heck is going on.
The first thing you might want to do is have the two blots compared and see if that helps. If you need help with that, you can consult with me at the clinic and we can work on that. But if you can do it through your own provider, that would be best.
Let me know how else I might help. At this point, it is impossible to know if you are infected, have it orally or genitally if you even have it.
Terri
My western blot was initially (at 16 weeks) negative for both HSV1 and 2. At 8 months it was negative for HSV2 and indeterminate for HSV1. I have not had any exposure kissing or sexual (oral or in intercourse) since June.
The 3.6 was for HSV1 at 15 weeks via IGG herpes select (it was negtive for HSV2)
If it is HSV1 will it reoccur often? I know usually HSV1 genitally does not reoccur often so does HSV1 on other body parts follow a similar pattern? If it is not HSV1 do you have any speculation as to what it might be?
I tired to insist on a culture but my PCP gave me the “unnecessary tests running up the costs of health care speech.”
Russ
It could be HSV 1 though that would be unusual in its location. I also wish that you had insisted on a swab. I think it is too late for an accurate test now that you are taking medication.
Can you help clarify for me:
Was your western blot negative for HSV 1 and 2, or just 2?
Have you kissed anyone since you had your western blot test done?
Was the 3.6 for HSV 1 or HSV 2?
Terri