Trying to move on (HSV-1)

[confusedraven]

Hello Terri,
You had previously helped me on the medhelp board, but I am still having some issues of uncertainty. Here is a link to our last conversation…
http://www.medhelp.org/posts/Herpes/Still-dealing-with-symptoms/show/2188287#post_10468574

Anyway, I have come to the conclusion that I have HSV-1 orally. That is pretty apparent from my symptoms even though my tests and swabs were negative. This doesn’t bother me at all. What still concerns me is that 3 days after my sexual encounter I experienced genital symptoms. These were a week before I had my first cold sore appear orally. The initial symptom was intense stinging on the rim of my penis, it actually woke me up in the night. In the morning, it was still stinging and now developed a red spot/patch. This was followed by what I can only describe as pressure in my genitals and increased sensitivity. There were no classic blisters or lesions, only redness and pain.

This same combination has recurred about 6 or 7 times since then. Same pain and then redness in the same exact spot. I just can’t see the time frame of the first occurrence as coincidental. It was three days after contact and then a week later my first oral outbreak appears? Anyway, a couple weeks ago the genital symptoms recurred again, so I called Westover Height to see if they could overnight me a swab. Was directed to a messaging service and my call was not returned. I guess my question is where do I go from here? I can easily tell someone I get occasional cold sores, not a big deal, but I still feel like I need to warn them about my genital symptoms as well.

The last time I had a phone consult the nurse said that daily swabbing would not be a good idea as it just causes more anxiety. I don’t believe that and I think maybe a 3 month period of daily swabbing would allow me to finally put this behind me, or be confirmed genitally. Any thoughts on this? I took a picture the last time and can post if you think it might help.

Sorry for being a obsessive about this, but being repeatedly told I don’t have herpes by doctors who are only evaluating the blood test is frustrating. Every test has been negative but you can clearly see from my oral outbreak picture that I have herpes, at least on my mouth.

[Terri Warren]

I’m sorry that your call was not returned. I’m not sure whose voice mail you left your message on, do you recall? I will be happy to check into this if you give me a little more information about your call, particularly the date and the name of the person on whose voice mail you left your message.
I have no problem with you doing daily home swabbing. It is very expensive, each PCR swab is now $75 (the prices have gone up for PCR). Is that something you can afford for three months? Would three months of daily swabbing convince you that you are not infected if every one is negative? If not, then I see no point in doing the swabbing to begin with.

Did you have a western blot? Do you recall there results?

Terri

[confusedraven]

Hello Terri,
I’m not sure who’s voicemail I was directed to. I called the main number, explained the situation (that I needed another set of swabs overnighted), and was then directed to voicemail. No reason to look into it though, the time has already passed when I would have needed them. I do appreciate your concern though.

As far as the daily swabbing… wow. I didn’t know it would be that much. Given that GHSV-1 only sheds about 5% a year, its possible that daily swabs could pick up nothing if there are no symptoms during the 3 months. I wouldn’t want to spend $7k on testing unless I knew it was going to provide a definitive answer. I guess the best thing to do is just order some swabs and wait until I experience symptoms again. I never had the opportunity to swab genitally, only orally. I just feel stuck in a holding period. I feel like I can’t rely on any of the blood tests because they have all been negative, but I’ve been diagnosed visually by different doctors when I had a cold sore. Since the test isn’t picking up HSV-1, how can I dismiss my genital symptoms, especially given the timeframe? I’ve presented the genital symptoms but no doctor I have visited has access to PCR swabs, or even knew about them. They all said the regular swab would need to collect fluid.

I did have a Western Blot done and was negative for both HSV1 and HSV2. Maybe it was done to close to exposure? It was right around the 6 month mark. Any advice for me moving forward? Do I have to schedule a phone consult in order to order more swabs?

I really appreciate your help in this matter and the time you take to answer these questions.

[Terri Warren]

Six months is plenty of time to wait to have a western blot done.

Yes, I like your idea about doing swabs when you have symptoms. To me, unless your are a very wealthy person, that makes a lot more sense. We’ve done a phone consult with you before? I think you said we did.

What I would recommend is that you contact Roger at my office and tell him we talked on the website and give him the screen name you used and tell him I said he should please send you three swabs and three vials. He can look it up to confirm this or ask me about it Thursday when I see him.

How does that sound to you? I am sure you are eager for some clarity on this issue.

Terri

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