Looking for answers

[scottd8]

Terri
I spoke with you on the phone last week. I had a risky encounter  unprotected on oct 5 of 2012.
I immediately had sharp soreness in my penis and bladder pressure. A single blister appeared about 2 weeks later on my testicle.
The blister did not itch or hurt but looked just like herpes to me. Unfortunately I never had it cultured. I instead popped it to look at the pus which was yellow/off whitish. Once popped the skin flap just folded over never crusted  and was not noticeable. The doctor i went to the next day thought nothing of it though i did not directly point it out. I have never felt normal since the interaction. My penis remained sore for about a month and I have constantly had some degree of bladder pain or pressure. For the last 6 weeks I have felt pain, throbbing and radiating behind my testicles and my testicles became sore and well as my penis. I decided to get two igG Elisa tests both at approx 8 months after exposure. They both came back negative one of them have the value of .07 for HSV 2
I would love to believe these results  and I have not had a blister since that day. I have notice red and white spots that seem to change and appear when I urinate. I have since been feeling nerve lightness or tingles all the way down to my feet back button and even up my spine at times. I have become convinced I am infected. I have not done a western blot but I don't know how much I would believe the result if it were negative and I of course fear the confirmation. On the phone you seemed to be convinced by the two negative tests at over 8 months exposure to be accurate. I have not taken any anti vitals but I am in good health, excersizes etc...I do have OCD and Panic disorder and my numerous urologists an primary have diagnosed CPP. What are the chances that I am an atypical case of herpes that just has not or will not seroconvert? I saw it mentioned in another thread that as many as %15 of people never convert. Is this true? I am so desperate for relief

[Terri Warren, RN, Adult Nurse Practitioner]

You can either have us order that for you, you would need to become a patient of the clinic, which we can do by a phone appointment or you can order a test kit through the University of Washington lab.

Terri

[scottd8]

Can I get you to go ahead and order that western blot for me Terri? I would appreciate that. Thanks.

[Terri Warren, RN, Adult Nurse Practitioner]

Maybe 8 times in 30 years
This is my final post on this thread
If a western blot would make you feel better do it.  We can order it for you through the clinic

Terri

[scottd8]

Some kind of red spot/lesion appeared on the side of my penis. I went for a culture but the doctor was insistent it was not herpes and that with no fluid there was nothing to culture and would be negative. It has been almost 48 hours now and am afraid it is too late. I am extremely frustrated and am trying to get a western blot. I am curious however since my tests for elisa were negative Only 2 weeks ago that a western blot could be a waste of anxiety and money. When you say it is very rare for someone to take longer than four months to convert and is usually a result of antiviral medication, how rare then is it for someone to take longer than 8 months? How often have you seen a situation like mine where the person did end up in fact having herpes? Is the western blot a waste for me?

[Terri Warren, RN, Adult Nurse Practitioner]

I didn't say that.  I said they are very rare and r usually a result of taking medicine for herpes.

Terri

[joeaccount]

The 15% quote you are getting is from http://www.ncbi.nlm.nih.gov/pubmed/12671550.  And it's not what you think it is.  The study was designed to 'race' the different serology tests to see who had the most successful detection time/accuracy, it was NOT designed to measure how long it takes people to seroconvert, that data was kind of a side note.  The bottom line is the median time follow up time for all of the patients in the study was less than 40 days.  That means over half of the patients were not tested beyond 6 weeks, and as you can expect, many of those patients had not yet seroconverted, and were ultimately labeled as NEVER seroconverting... in truth they DID seroconvert after six weeks, but it was NOT recorded officially by the study, thus the study was forced to to give a 15% seroconversion failure rate.  There is even a line in the study that points this out "lack of seroconversion may be due to short follow up time".   So don't sweat it.  A negative WB is accurate.

[scottd8]

I thiught i recalled you mentioning on the phone that in your experience you have not seen someone take longer than 4 months to seroconvert? is that correct ? iin the absense of hard data can you put my aituation into perspective as to my likelihood of infection given my timelength of testing yes persistant symptoms? Do you know of where I can get the western blot test here in austin texas?

[Terri Warren, RN, Adult Nurse Practitioner]

I am sorry but we really don't have data on that.  Sorry

[scottd8]

I really want to believe. I do. I  am still curious to know if there is any actual data about late seroconversion or non seroconversion in patients beyond 6 months exposure with no viral suppressants.  How rare would I have to be to in fact be infected at this point of  squarely ngative elisa tests at 8 months past exposure?

[scarednow526]

We get caught in these circles about Herpes and seroconverting (or lack of).  Trust me, I'm one of them.

Let's say that 2-3% of Herpes cases result in failed seroconversion (or detection of antibodies anyway).  Way more people than that are misdiagnosed with cancer every year (estimate 15%).  Something as prevalent in our lives as cancer can be misdiagnosed 15% of the time and is probably missed altogether way more than that.

I point this out only to say that I do not sit an worry about having cancer and my Dr. missing it at my annual physical, and I don't worry about not having it and my Dr. pumping full of radiation from a misdiagnosis.  And those 2 things are life and death!  Why then, should you or I worry about Herpes after so many things say we don't have it?

I am choosing to believe the tests as 100% in the absence of a perfect test.  Please join me.

[scottd8]

I'm not sure what would convince me as I feel as though I either have not seroconverted or will not seroconvert.
Do you have any data on people who do not seroconvert or take longer than 6 months to seroconvert with no viral suppressors?
I don't know how to believe anything other than I'm infected. I don't want to infect anyone else and I can't ignore the onset of symptoms

[Terri Warren, RN, Adult Nurse Practitioner]

No, I don't believe that statistic at all.  
Your skin lesion sounds nothing like herpes.  First of all, I rarely see herpes lesions ONLY on the scrotum and rarely do they have pus in them.  Also, herpes doesn't cause the type of symptom that you describe, as we discussed on the phone.

I am convinced that you don't have herpes and your symptoms are typical of CPP - so typical!

I know you don't want to do the western blot and if you can't believe the results then there is no point in doing it anyway.

What would convince you that you don't have herpes?

Terri