Negative western blot but symptoms continue

[Mmm77167]

Hello Terri,
I have emailed you directly for a refund on my other account as it did not let me use the follow up questions I purchased.
Back at the end of January I did the western blot with you after an encounter I had. The person I had the encounter with tested negative and so did my partner I was with before and after the encounter. Before that I had been married for 7 years to the same person and he also tested negative.

My symptoms all started 3-4 weeks after said encounter. Starting with back pain, then leg pain and nerve burning all over legs, hips, pubic area. Tingling all over my back butt and occasionally genitals. Never any sores, lesions or anything. I did have BV multiple times in between and was treated for it. My anxiety started after I got tested for HSV by blood only 3 days after the encounter. Came back positive for hsv1 at 30 (which I knew I’ve had cold sores forever) and 2.14 hsv2. I didn’t find my results till 4 weeks after. Coincidentally is when I started experiencing symptoms. I tested multiple times and all my levels were below 2. After my symptoms were constant for over 30 days I finally decided to do the WB. It was positive for HSV1 and negative for 2. But I am back because I am still experiencing symptoms and I’m concerned. In the time between then and now my symptoms lessened gradually but are now back in full force. Including the back pain, leg pain, burning nerves all over pelvic area and a burning sensation on the left labia. No cuts or lesions. I even got a swab after the WB on the burning areas and both were negative

So here are my questions:
1. I emailed you directly about this after my results but I took the WB 9.5 weeks after the encounter that prompted to get test you stated it was enough time as all partners were negative on IGG. Is it possible 2.5 weeks could of given me a false WB? Should I retake it?
2. I’ve been using valtrex off and on for cold sores, do I need to wait 12 weeks to get an accurate result if I retake it

[Mmm77167]

I wanted to fit in some questions that didn’t fit above.

3. If this was a new acquired infection and that’s the reason it didn’t show up on my WB, I continued to have unprotected sex with my partner (same partner I’ve had since symptoms started, who tested negative himself) after I got results, it’s safe to say there’s a high chance I would have transmitted to him and he would show symptoms right? However to date he hasn’t.

4. My main symptom is a skin nerve burning feeling like if my skin is on fire. It includes my entire pelvic area and hips, back, thighs, sides of knees and ankles. It’s constant. My neurologist diagnosed me with fibromyalgia. However my concern is that it affects my genital area. Have you seen symptoms like this with HSV2 without an actual outbreak of lesions or sores?

5. The left side of my labia is the area that feels the most pain and irritation however it mostly burns on it’s on or when clothes touch it. Never when I’m peeing or anything so I don’t think there’s actual irritation there. My OB swabbed the area for me twice and both times it was negative for PCR HSV1/HSV2. If I was experiencing symptoms like the burning and nerve pain, is it safe to say the swab could have picked it up as symptoms mean shedding?

Finally to follow up above. Do you think I should retake the WB? Get another swab while having symptoms?

Thank you Terri. Hoping to hear from you soon

[Terri Warren]

1. I emailed you directly about this after my results but I took the WB 9.5 weeks after the encounter that prompted to get test you stated it was enough time as all partners were negative on IGG. Is it possible 2.5 weeks could of given me a false WB? Should I retake it?
The only reason I would think it wasn’t enough time was if one of the previous partners told you they tested negative but it wasn’t true OR they had the wrong testing done.

2. I’ve been using valtrex off and on for cold sores, do I need to wait 12 weeks to get an accurate result if I retake
I don’t believe that you need to retake it AND intermittent dosing with Valtrex is not enough to through off your results unless you are taking really significant amounts for extended periods of time

3. If this was a new acquired infection and that’s the reason it didn’t show up on my WB, I continued to have unprotected sex with my partner (same partner I’veouitted to him, then you could have given it to him but you are saying you think you got it from him so none of this really makes sense to me?

4. My main symptom is a skin nerve burning feeling like if my skin is on fire. It includes my entire pelvic area and hips, back, thighs, sides of knees and ankles. It’s constant. My neurologist diagnosed me with fibromyalgia. However my concern is that it affects my genital area. Have you seen symptoms like this with HSV2 without an actual outbreak of lesions or sores?
I don’t believe so, no.

5. The left side of my labia is the area that feels the most pain and irritation however it mostly burns on it’s on or when clothes touch it. Never when I’m peeing or anything so I don’t think there’s actual irritation there. My OB swabbed the area for me twice and both times it was negative for PCR HSV1/HSV2. If I was experiencing symptoms like the burning and nerve pain, is it safe to say the swab could have picked it up as symptoms mean shedding?
Yes, the swab can pick up virus if it’s there even if there is no sore there.

So you have a negative western blot, negative swab tests, your partner who you think you got it form tests negative, I think you have a lot of evidence that you are not infected with HSV 2.
If you want to take another blot, you sure can but just thinking you have lots of evidence that you aren’t infected.

Terri

[Mmm77167]

Thanks for your response Terri. I just wanted to clarify some stuff that you seemed confused on and I did not explain well enough.

1: My most recent partner let’s call him A. I had previously been with since before my encounter with another person let’s call him B, that prompted me to get tested because this person was a stranger and the interaction happened while I was intoxicated. I then continued a relationship with A. He got tested via IGG. And so did B and both were negative. My question is, I continue unprotected relations with A after my blot was negative. If I truly had a newly acquired HSV2 infection and he was negative IGG, it’s safe to say I would have most likely transmitted to him?

2. Since posting this I had another swab come back negative. This is now the 3rd swab with symptoms come back negative. Is it safe to say this is another sign to believe my blot?

3. What amount of valtrex do you consider a lot enough to have to wait 12 weeks to retest?

I will be exploring other things with my doctors meanwhile I decide if I want to retake it or not, but at 9-10 weeks how accurate is the blot? I have not had any new partners since and don’t plan to.

Thanks

[Terri Warren]

1: My most recent partner let’s call him A. I had previously been with since before my encounter with another person let’s call him B, that prompted me to get tested because this person was a stranger and the interaction happened while I was intoxicated. I then continued a relationship with A. He got tested via IGG. And so did B and both were negative. My question is, I continue unprotected relations with A after my blot was negative. If I truly had a newly acquired HSV2 infection and he was negative IGG, it’s safe to say I would have most likely transmitted to him?

Well, I’m not clear if parter B tested negative how you would have transmitted to partner A, but if his test inaccurate, let’s say, you would not necessarily have transmitted to partner A anyway – transmission doesn’t always happen in a sexual relationship. Couples go years without transmitting.

2. Since posting this I had another swab come back negative. This is now the 3rd swab with symptoms come back negative. Is it safe to say this is another sign to believe my blot?
One of many reasons to believe the blot!

3. What amount of valtrex do you consider a lot enough to have to wait 12 weeks to retest?
If you’ve taken more than a couple of weeks of Valtrex it could conceivably influence the blot.

Terri

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