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movingrightalong 04-17-2009, 07:24 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?
angeleyesinnj81 04-17-2009, 07:34 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?
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, 08:18 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?
angeleyesinnj81 04-17-2009, 08:52 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, 11:26 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.
angeleyesinnj81 04-21-2009, 11:34 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.
Hi Mary,
I am sorry to hear your dealing with this, but as for testing positive for HSV.. if you have a canker sore this is not herpes.. herpes is the cold sores on the lips:)
The best blood test out there is the Western Blot.. which I would suggest you take to be sure and to settle your mind.
Skin rashes can be many things.. maybe its a form or eczema? I would try 1 more derm maybe 3 is a charm?;) Like I mentioned to the original poster some doctors seem to be more insightful then others.
I also tend to get rashes when the weather is warm out.. I am not sure if yours are seasonal or have no preference..
movingrightalong 04-21-2009, 12:38 PM
Hi Mary,
It's so frustrating and it sounds like you're in a similar boat!
There are a billion skin afflictions, but the recurrence-factor in the same location leads me to herpes every time. I haven't found anything else that looks and behaves like this other than herpes.
At this point, my "obs" are incredibly mild, but I can always tell when I'm going to have one. It's a familiar itch in the familiar spot and without fail, there's my bump. (Initially, years ago, it was a row of bumps, then narrowed to a few and now it's one or two).
I can't help but wonder if it's a strain that isn't tested for.
Did you have success with the Valtrex or other antivirals? I haven't taken any, but as I said originally, I had good results with lysine and another natural topical herpes treatment.
I have spent countless hours scouring the internet, but can't find anything that behaves like this. It's not dependent on weather, it's not a reaction to detergent, it's not eczema.... I don't know why my blood tests are normal.
Trust me, I'd love to believe it's NOT herpes, but things just don't add up.
Please let me know if you come up with any new ideas...
angeleyesinnj81 04-21-2009, 01:28 PM
Do you think it may be a form of Acne (Pustules) I just read that it sometimes looks like herpes? I am trying to do some research over here for you as well
marymk 04-22-2009, 02:07 PM
Thanks to everyone for your suggestions - my GYN thought it might be acne -but I don't get it anywhere else - she is the one who ordered the blood tests. Through all my research I have also come up with Impetigo as a possibility - although this seems like mostly a childrens condition, it can occur in adults. Just an idea - although I think that at least one of my doctors would have a clue.
I guess it might be time to seek another opinion.
This last episode started when it was still cold out - so it's not the heat. This last batch was worse than usual - and I have had major hormone fluctuations over the last 5 months, as I am starting to enter menopause.
Fortunately, my husband is very patient about all of this - if it is herpes, I picked it up from my ex - who I've been divorced from for 19 years - and I had the symptoms before I started dating my current spouse. It was very mild back then and I didn't even suspect it was herpes, until it just kept coming back in the same spot.
movingrightalong 04-22-2009, 02:26 PM
Yes.. the "kept coming back in the same spot" is the operative phrase. 10 years of acne or impetigo just don't seem to add up either. Especially if it's nowhere else. The rest of my butt is smooth and normal, it's just this one little spot. (And it was worse in the beginning, which is also consistant with herpes... OBs tend to lessen in severity over the years).
I just saw my derm (about something unrelated) and she agreed again that everything about sounded like herpes and that my negative bloodwork was perplexing.
She said that at this point it's a question for an infectious disease doctor and I think I'm going to try to find one.
I wonder.... is there a strain of herpes that the tests don't pick up on?
blingblingsme 04-25-2009, 07:21 AM
Hi Im brand new to this site..and yep to the problem too, but Im a bit in the same boat with blood tests etc coming up negative.
Everyone Ive seen has said its herpes until the tests come back negative. i have sores genitally and a mouthful of sores going down my throat. nice eh! nothing on the lips, have never had a cold sore. Its really doing my head in cos Id rather just know so i can move on. im on an antiviral but that hasnt helped with the mouth ulcers yet, just have a new outbreak now. arggh lol
Its hard to deal with when you arent getting definitive answers
Truthseek 04-25-2009, 02:16 PM
Hi Im brand new to this site..and yep to the problem too, but Im a bit in the same boat with blood tests etc coming up negative.
Everyone Ive seen has said its herpes until the tests come back negative. i have sores genitally and a mouthful of sores going down my throat. nice eh! nothing on the lips, have never had a cold sore. Its really doing my head in cos Id rather just know so i can move on. im on an antiviral but that hasnt helped with the mouth ulcers yet, just have a new outbreak now. arggh lol
Its hard to deal with when you arent getting definitive answers
Did they ever swab active sores? It can take some people longer than the average 3 - 4 months to seroconvert (produce enough antibodies). For one person on this board it took over 6 months before her test was positive. But a swab of a 'fresh' sore is very accurate.
I also had mouth sores and white things in throat for a long time when I first got infected. I went for a swab but they turned up negative but I still think they are related to the HSV2. Thankfully, they have not reoccurred.
blingblingsme 04-25-2009, 08:25 PM
Did they ever swab active sores? It can take some people longer than the average 3 - 4 months to seroconvert (produce enough antibodies). For one person on this board it took over 6 months before her test was positive. But a swab of a 'fresh' sore is very accurate.
I also had mouth sores and white things in throat for a long time when I first got infected. I went for a swab but they turned up negative but I still think they are related to the HSV2. Thankfully, they have not reoccurred.
Yes they did swab, but there was just raw flesh, no juices as such lol so they didnt get any positive result. Also had the mouth ones swabbed and came up clear for everything.This last lot has been going on a year, and its been the worst ever, but it all started 9 years ago. Tis getting ridiculous, if it was herpes it should test positive.
blingblingsme 04-27-2009, 10:23 PM
update for me..theres a possibility I have behcet's disease, not herpes. Wonder how many herpes sufferers have this instead when they also have negative results for swabs and blood tests. Mind you, its a nasty as well, with a much worse outlook. ahh well such is life eh
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