October 12, 2015 at 5:56 pm #10021ImgoingcrazyParticipant
First potential exposure and Symptoms June 2013
Last potential exposure May 5th, 2014
Parties unknown if positive for HSV1 or 2
– 08/29/14 – Sonora Quest Lab – HSV1&2 AB IGG < 0.2 NEG
– 01/20/15 – Labcor – HSV2 AB IGG < .91 NEG
– 02/16/15 – Sonora Quest Lab – HSV1&2 AB IGG < 0.2 NEG
– 05/28/15 – Labcor – HSV1&2 IMMUNOBLOT IGG < .91 NEG
– 09/23/15 – Labcor – HSV2 AB IGG < .91 NEG
– 02/16/15 – I also tested for all STDs and all came back NEG
Symptoms – Red Tacky/Warm/Sweaty Feeling Scrotum Daily, Genital Area Irritated Daily, Sensations on Inner Thighs almost everyday, Itchy feeling in crease between scrotum & thigh almost daily, Burning with Urination every so often, & Occasional Lower Back Pain on Right Side rarely on the Left Side
I’ve never had a “cluster” of bumps however I have had a few bumps that look yellowish on inner thigh between scrotum & thigh. They have a slight red outline. Always one or two bumps, typically one. Sometimes a hair grows from it other times no hair. PCP called it a pustule however I have never had any prior to my potential exposure in June of 2013. Because I fixate on the area I have found these every so often.
PCP & Dermatologist prescribed numerous anti-fugal topicals & oral medications with no resolve. I’ve taken meds for UTI, Rashes, & Yeast Infection. Dermatologist final diagnosis was Red Scrotum Syndrome (RSS). I took Gabapentin to try and help. It reduced the redness a little. I took for several months no resolve.
My main concern is the potential of having HSV1 or 2 and infecting someone else if I’m positive. My second concern is the daily irritation in my genital area driving me crazy not knowing what is going on and why I can’t get rid of this.
Based on your knowledge of HSV1 & 2 what are my options? Is it possible to test NEG after 17 months? Should I continue with additional testing? If so, what tests? Should I see a urologist or are there other specialists? Ive given up on PCP & Derm.
October 13, 2015 at 8:06 am #10038Terri WarrenKeymaster
I don’t think additional testing for HSV 2 is going to help you at all. And your symptoms do not sound herpetic in any way. Everyone has small bumps on the thighs or buttocks from time to time and the vast majority are not herpes. If you want to be clearer about HSV 1, you could get a herpes western blot as the screening test misses about 27% of HSV 1 infections. But even if your HSV 1 western blot is positive (and we can order this for you from our clinic), it doesn’t mean that your genital symptoms are genital HSV 1 infection. Red scrotum syndrome does sound like what you have and I don’t fully understand what causes that – we have patients who have it and it is very annoying for sure.
I’m seriously thinking that herpes is NOT your problem here.
October 13, 2015 at 6:35 pm #10068ImgoingcrazyParticipant
Thank you I appreciate the quick reply.
Can you please let me know what the cost and how I can move forward with additional western blot testing?
I have never had a cold sore on my face ever. The test I took on 8/29/14 (approx. 4 months past last potential exposure) & 5/28/15 (a year past last potential exposure) included HSV 1 and both came back NEG.
Given this, would it be wise to just get a western blot for both HSV 1 & HSV 2 to be certain?
Again, my main concern is passing something to someone if I have something. Both my PCP & Dermatologist said I am not contagious but for me personally I want to make sure I do everything possible to make absolutely sure I don’t have herpes or something that could be passed to another person.
When you state western blot screening test misses about 27% of HSV 1 infections does that mean false positives or false negatives?
Last question, in lieu of additional testing would it be wise to ask my PCP to prescribe Valtrex or another med for herpes to see if it resolves my issues? I am not sure of potential side effects or issues that my arise going this route.
October 15, 2015 at 7:14 am #10079Terri WarrenKeymaster
The cost of the western blot depends upon the state in which you live. If you live in New York, Florida, Pennsylvania, maryland or Rhode Island the cost is $315. If you live anywhere else, the cost is $250. Long story.
You can arrange to get this test by calling and setting up an appointment with me at the clinic (on this website). Usually we can make you an appointment with the week.
If your concern is primarily HSV 1, then the western blot will shed more light upon this than the screening test for sure. According to a study we just presented at a meeting in Australia, the screening test misses 27% of HSV 1 infection, compared to western blot. That means that for every 100 western blots that are positive for HSV 1, the screening test only picks up 73% of those. It misses the rest.
I am never a fan of treating with medicines for something you don’t know that you have, such as in this situation. No. I think it would be far better to know what is actually going on by a better test. The western blot also picks up 2% more HSV 2 infections than the screening test, which is minor but good to know if you are already going to do it for the HSV 1.
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