Blood Tests - Herpes Message Board

movingrightalong · 04-17-2009, 05:24 PM

Hi all,
I haven't visited this board in a long time, but used to frequent it and it has been a huge source of info and support.
I have had a few recurring bumps on my buttcheek for 8 years now, almost always in the same spot. In retrospect I remember and "initial outbreak" which consisted of a VERY itchy row of bumps in the same spot on my butt cheek which scabbed over (after I scratched them to death). Never had a test done because there was no doubt in my mind that it is herpes. They're always in the same spot and at one point would occur like clockwork every month for like 3 years. I got it under control with Lysine and an amazing topical ointment and now my "outbreaks" are very infrequent and last only a day or so.
Here's the thing... I have taken 2 type-specific blood tests; the ones that are like "97% accurate" and they've both come back negative for both types.
Has anyone experienced this?
I can't for the life of me figure out what else it would be. My doc and dermatologist both agreed that it sounds like herpes, but that the negative serology should speak for itself.....
I'm stumped. Any thoughts?

angeleyz81 · 04-17-2009, 05:34 PM

Quote:

Originally Posted by movingrightalong

Hi all,
I haven't visited this board in a long time, but used to frequent it and it has been a huge source of info and support.
I have had a few recurring bumps on my buttcheek for 8 years now, almost always in the same spot. In retrospect I remember and "initial outbreak" which consisted of a VERY itchy row of bumps in the same spot on my butt cheek which scabbed over (after I scratched them to death). Never had a test done because there was no doubt in my mind that it is herpes. They're always in the same spot and at one point would occur like clockwork every month for like 3 years. I got it under control with Lysine and an amazing topical ointment and now my "outbreaks" are very infrequent and last only a day or so.
Here's the thing... I have taken 2 type-specific blood tests; the ones that are like "97% accurate" and they've both come back negative for both types.
Has anyone experienced this?
I can't for the life of me figure out what else it would be. My doc and dermatologist both agreed that it sounds like herpes, but that the negative serology should speak for itself.....
I'm stumped. Any thoughts?

This may sound funny..but you say every month (or used to be) for 3 years... would this happen during "that time of the month"? I am only asking because my skin is super sensitive and i tend to break out in if i use certain pads... I myself sometimes get bumps on my "cheeks" and eventually they will go away... I know that they are not herpes all though I am positive for HSV2. Do they look like hives? Maybe it can be form of eczema? Had you changed detergents or soap that you hadn't used before? I noticed that now since the detergent is 2x concentrate I had to switch because that was too harsh for my skin. ... Just some thoughts

movingrightalong · 04-17-2009, 06:18 PM

I appreciate your ideas!
It would actually occur just after my period, always two days after I started back on my pill which lead me to believe that it was reacting to hormones, which herpes can do. The bump(s) is/are always in the same exact place. I took lysine for years and had great success, it cut down my OBs exponentially. Lysine coupled with a natural topical herpes product that I use would stop the ob in it's tracks and really curbed the recurrences. I could knock anything out within 2 days.
They're infrequent now and I honestly wouldn't even care except that I'm pregnant and want to know for sure if I do or don't need to take preventative measures before a vaginal delivery.
I've researched (and for the first few years, obsessed) about herpes. Honeslty, I think I could present a comprehensive lecture on the subject...and I can't for the life of me find anything else that it could be. Like I said, even my dermatologist says it sounds like it should be herpes. My "lesions" are so short-lived and don't ever open-up, so I don't think there would even be much to culture.....
And trust me... I want to believe that the blood tests are correct, but it really and truly doesn't add up.
Anyone?

angeleyz81 · 04-17-2009, 06:52 PM

Congratulations on your bundle of joy !!

Did you have the Western Blot blood test done? That is supposed to be the best although its more expensive then the IgG .. but If you haven't had that one done... I would suggest maybe you go ahead and if that comes back negative I wouldn't go crazy over thinking that you have herpes

.

Also, did you go to another derm for a 2nd opinion I am not knocking your doctor but sometimes one may know a little more then another.

marymk · 04-21-2009, 09:26 AM

Sorry this is so long - but I've had years of frustration with this ...

I have also had recurring sores on my butt cheeks for almost 10 years now. Actually it started as one spot on my very lower back at the base of the spine. I finally had a dermatologist look at it and she said it was herpes. After three years of various suppressive treatment - valtrex, ointments, etc... I had bloodwork done and it came up negative for both types of herpes.

The last round of sores were seeming to spread a little, and I happened to be at my GP for a sinus infection and showed her the sores. She wasn't totally convinced that it was herpes - especially since the bloodwork was negative.
She gave me a very strong antibiotic for the sinus infection and said if the sores were bacterial, it would clear them up also. After 14 days on the meds - it only cleared up a little. I also had my Derm appt during this time - and she wasn't sure anymore what to think - still leaning towards her original diagnosis of herpes.
Now - after I've been off of the antibiotics for a week - I decided to start on my Valtrex again ( I had stopped taking it 6 months ago). The sores are slowly drying up and starting to clear. So what do I have ??? Not sure - maybe the tests are not perfect - I know I've had canker sores in my youth - so why didn't I test positive for
HSV1 - makes no sense to me. It's very frustrating - to say the least. And I can't seem to get an answer from any Dr I show it too - Derm(2), GP, GYN, Colon Dr (yes - he saw them too and suggested MRSA - the antibiotic I took is also prescribed for MRSA - and it didn't work). It's getting to the point that the Dr's are asking me - what do you think it is? This is crazy - I go search to internet and get back to them with more suggestions - but I'm thinking that Hepes is the real answer - even though I would like it not to be.