Question for Grace and Others Regarding Herpes Experiences

I was just wandering how accurate you feel the doctor's advice is on this forum.  He makes blanket, matter-of-fact statements that I have found to be personally inaccurate.  For instance, he says that recurrent herpes outbreaks are always unilateral.  I am having a bilateral outbreak right now.  I have had herpes for more than twenty years, so I know what a lesion looks/feels like.  He also claims that almost all recurrent lesions are on the genitals and very rarely anywhere else.  My husband eventually caught herpes from me (it did take many years) but he has never had an outbreak on his penis, only on his thighs.  Anytime someone writes him regarding outbreaks on thighs or related areas, he always assumes it's not herpes.  I am not trying to dog the doctor.  I just wander if anyone else has also experienced symptoms like mine - outside of what he says does not happen.

[hopeforbest]

[hopeforbest]

I thought of something else that he said that I find inaccurate - that recurrent outbreaks are always in the same place.  I have some that recur in the same place, but also new spots do occur.

[estrellab]

I agree. Many times a post would sound like herpes to me  and he would say, nope, sure does not sound like herpes. I have often wondered myself.
EB

[herpeshurts]

It is always very clear that internet doctors cannot judge whether a particular case is herpes or not from a written description of symptomes as it comes in many different guises. The only clear way is to visit a doctor in person for proper testing (the docs on this site sometimes say this). Note some doctors cannot even recognise herpes when it stares them in the face so testing is the only way.

Blood testing for those that dont get symptoms - however bad thing is unless you have obvious lesions you cannot tell where the particular strain of HSV is (ie HSV1 or HSV2)

[gracefromHHP]

I adore HHH and have actually met him in person.  I'd work with him anytime if he'd ever ask me ( of course he'll have to move to the other side of the country - I'm not moving out there...he he he ).  That said - yes he and I don't always agree and sometimes I publicly disagree with him on his board if I feel it's worthwhile.  At the same time I also can defend why he says what he says sometimes too. It's INCREDIBLY difficult giving advice on the web. It's even more difficult doing it on a forum where thousands of folks are pouring over your every post and hanging onto what you say.  If you say to one poster that yes the symptoms that they are having could be herpes go get tested - then you get 20 posts in the next hour saying but doc you told me mine couldn't be herpes or omg I thought I was done testing but now I"m thinking I had a false negative etc.  No advice on the web is meant to replace what your doctor tells you or the benefit of an actual in person exam.  Also even though I'd like to say it doesn't happen - depending on what kind of day any of us has had - is sometimes reflected in our replies ( and it also gets very frustrating typing the same thing over and over and over again day after day ).  So most of the time we go with the generally accepted advice - sometimes it's wrong but the majority of the time it's right for the majority of posters. One of the issues with the medhelp forum especially ( it's on other boards too but the incidence of it seems to be sky high here for some reason ) is what HHH rightfully calls " genitally focused anxiety".  There are lots of folks here who are searching hard to find symptoms to feed into their anxiety related to a sexual encounter. I think part of why HHH sometimes says what he says is to help keep that to a minimum ( and I"m not saying that's a bad thing at all to approach it that way and I often do it myself ).    I'm also more likely to tell folks to go get tested and cover your bases than he is.  To me if 90% of folks aren't aware of their hsv2 infection and 25% of us have it - you don't have to be a math genius to see that the odds are that you will get it at some point so why not test for it on a regularly basis even though the generally accepted advice is - unless you have symptoms or you know you've been with someone infected don't test.  I'm out there dating and being sexually active with new partners - I know how stressful it can be.  I'm think HHH hasn't dated anyone new in awhile to identify with that part of it all  ;)  I've also been living with an active herpes infection for 21 years. All of that goes into why my replies are sometimes a little different than his. I've also been doing the online boards for 8 years now I think - what folks tell us on the boards and what they tell their doctors are often 2 completely different things!   Of course if you put 10 different medical professionals in a room, gave them the same post to answer - you'll get 10 different replies to it. That's just the way it is.  Even at the last cdc std conference - the "experts" all even tended to have different opinions ( really differed depending which side of the ocean they were on...he he he ).  

So yes statistically a brand spankin new herpes infection will often present with symptoms on both sides and recurrences are almost always just on one side at a time.  That said - my own damn herpes infection still 21 years later hasn't read the handbook to know what it's supposed to do ;)  Sounds like yours might not have read it yet either ;)  There are exceptions to the blanket statements most of us make in healthcare.  You will every now and then have the ob from hell that doesn't fit anything in the handbook ( usually when I get one of those its because there's something else going on too - might be worth checking out yourself - mine's usually vaginitis ).  It just means you should start applying for the "if it weren't for bad luck I"d have no luck at all" club that some of us are in ;)  Yes you can get ob's only on the thigh area. It's still part of the "boxer short" area that we talk about.  Some folks even get recurrences even further down the legs. It just depends if you are infected in the sacral or the lumbar area of the nerves ( or both even ).  It's different from person to person and even ob to ob.     HHH will say you don't get ob's more often than monthly - I got them twice a month for years and will even get them that way now sometimes if I"m not on suppressive therapy. He also says that at this point I shouldn't be having hardly any ob's at all and well the last time I was off suppressive therapy - I had 7 in 6 months which means I'd have 14 a year ( which is better than when I had 20 a year granted ).  Knowing what I know from my own education on herpes and from talking to others infected as long as I have been I know that I'm an exception to the rule and I'm ok with that - I don't talk about how it's been for me to depress folks - I talk about it show you that yes it's not always textbook and guess what - you can still get thru it and live life to the fullest. My herpes will always be the least of my medical concerns with my body.  This is not the best forum for long term support - there are better ones out there for that if you are interested ( herpeshomepage.com  is my fav though since I"m a moderator there of course I"ll say that ).  No one pays for research on folks infected with genital herpes for 20, 30 or even 40 years so there's not much "official" out there to back us up. There is a study that is waiting to be published where they did look at shedding of hsv2 in folks infected for >10 years. The results are interesting to say the least ( can't really say more until it's published ).  Other than that - not much out there. Also most folks who aren't newly infected - aren't hanging out on the boards to support others long term to even get a chance to talk about what it's like over the long term.  I also don't think a lot of medical practioners are even asking their patients - hey how's the herpes. I think they assume that if it was an issue they'd tell them about it.  When you only have 12 minutes to do a full physical and teaching in - after a certain age talking about diet, weight loss, smoking cessation and exercise to prevent heart attack and stroke becomes the priority.  You get a 69 year old patient in front of you - asking how their herpes they caught as a youngin' has been over the years is not something medical professionals are going to do to be honest. The majority of the folks you see have brand spankin' new infections and NEED to talk about them with you.  I hope that makes sense?

So yes - sometimes you have to do your own research to figure out just how "normal" you really are.  HHH's is for the most part excellent advice but it's not always going to cover it all ( and neither is mine ).   Trust me when I say doing what we do is not the easiest thing in the world.  I'd rather spend the time with a real life patient in front of me myself ( though at least online you can make faces and they can't see you...he he he ). I do what I do because I want others to 20 years later say - omg my herpes - what a pain in the *** - literally - just like I do :)  I hate seeing folks putting their lives on hold for this pesky and very common virus. Same as I hate it when they've been getting erroneous advice or the run around from their medical practioners.  

grace

[hopeforbest]

Grace, thanks so much for taking the time to respond to my inquiry.  I do get what you are saying.  I too have read the questions from people who are clearly suffering from anxiety and most likely not from HPV or any other STD.  I also understand that the amount of information that one can give is very limited since the problem is not actually seen by the doctor.  My reason for questioning the doctor was really more for the reason that I was hoping that the statements he makes regarding HSV were in deed fact.  This will be easier understood if you would be kind enough to refer to a question that I posted to the doctor dated 7/23/07 entitled "HPV Transmission to Child".  I hate to impose upon you further, but I would greatly appreciate it if you would read my post and give me any input that you can regarding this situation.

[h8outbreaks]

My husband & I both have had outbreaks on the tops of our thighs and I in other places as well. Most of the time yes they are in the same spot but I also get them in new areas as well. I believe that is from the shedding of the virus and it spreads.

[gracefromHHP]

you aren't going to transmit your herpes to your kids.  It's not that easy to transmit it to a sex partner let alone worry about transmitting it to your kids.  In 20 years of being a pediatric nurse in a major children's hospital - I've never seen hsv2 transmitted to a child without sexual abuse ( or of course during birth - neonatal herpes is a whole other ballgame ).  Hsv1 to their oral area - sure but nothing genital.

If you post a link to your question I'll gladly take a look at it - i'm too lazy to search for posts most days.

grace

[hopeforbest]

I'll just tell you what transpired.  When my daughter was 4 (13 years ago) I had a bad outbreak on the cheek of my behind - a cluster of blisters almost the size of a nickel.  I had no idea what it was and I scratched that thing constantly.  I took daily baths with my daughter and we shared bath towels.  I finally went to the dermatologist and got the diagnosis.  I immediately got literature on it (some book from the library) and it claimed that it could be transferred via soap, towels, etc.  I checked my daughter out and she actually had 3 tiny blisters on one cheek of her behind.  I was horrified!!  I did not imagine it - they were there.  I made a pediatricians appt., but by the time they saw her they were pretty much healed.  Well, I put it out of my mind for years until at age 12, she told me she had two itchy bumps - one on each side of her labia.  I have since seen bumps here and there around her waistline area.  I realize that those could be nothing, but can't help but think that the tiny blisters on her rear and the two bumps that she complained about later are too coincidental to be nothing at all.  Or do children get blisters like that from other things?  I can't tell you how badly I want to believe that I did not pass this to her, but I hope you can see why under the circumstances I would believe that there is a possiblity of it.  This has been a source of such intense worry for so many years.  Thank you so much for your help.

[h8outbreaks]

I take it that you daughter is 17 by now, so she has learned about herpes in school. Has she asked any questions about the bumps she gets? Also she is old enough to go get a pap then tested for all std's even if she's never had sex. Oh man I can't even began to understand how you feel as a mom about this. (i have herpes and also a mom) I would say that it's possible but I am not a doctor. And you will never know and this will drive you insane untill she gets tested. Deal with things one day at a time...I will pray for you.

[hopeforbest]

[hopeforbest]

Thanks so much for your genuine concern.  Yes, she is 17 now and I am sure she has learned about STD's.  She has never mentioned any other bumps to me.  I have wanted to ask many times, but I always lost my nerve.  Just thinking about it is so painful, I never could make myself ask.  I hope she would have told me if she had them.  She is a beautiful girl and has made a conscious decision not to date until she graduates so she can concentrate on her grades  - so no, she has never had sex.  I don't know how I would ever suggest such a test to her.  I don't know how it will eventually play out.

I read your posts and was sorry to see how plagued you are by this disease.  It is difficult to take herpes in stride when the outbreaks won't heal!  Although I only have about 2 - 3 a year, I know it gets me a little down when I do have them.  For me, it's a constant reminder of my stupid, wreckless ways when I was young.  Are you under an unusual amount of stress right now?  I know that my worst outbreaks happen when I am under a lot of stress.  I just hope that things will settle down and you will begin having much fewer outbreaks.  

[h8outbreaks]

No I'm not stressed out or anything. My doctor is running tests on me as I speak. I won't find out what's going on until Oct 8th (Monday). The doctor believes that I am having a bad bacterial infection that is not letting my meds work the way they should and that is the reason I'm having so many outbreaks. But I won't know for sure until Monday. I pray that everything is fine. Right now I'm not stressing over the results but I know when Monday gets here I will be on the edge of freaking out by the time I get to the doctor. I will have to double up on my Xanax so the stress stays low.

I know that you don't want your daughter to know you have an STD but maybe you should tell her so that she will understand that it can happen to anyone. Explain to her that people make stupid  choices and bad things happen. Then tell her that when she was little you two took baths together and you would like her to get tested to make sure everythings ok. Easier said than done I know. Or if you have a good family doctor, talk to him about your problem with your daughter and see if he will give her a full physical and ask him to take blood and give her a herpes blood test. She won't have to know what it is that he is really testing for. Maybe tell her he's running a white blood cell count to make sure her immun system to working as it should since flu season is coming up soon. But if it comes back positive then you got some explaining to do to her.
Good luck and best wishes to you.

[hopeforbest]

I have considered that second option.  At some point it will need to be dealt with.

I am glad you are investigating the reason for so many outbreaks.  I hope a resolution comes quickly.

I see that you have posted a lot on this forum - offering help to others.  That's great!

Good luck on Monday!

[gracefromHHP]

It's doubtful it's hsv2 that your daughter has been experiencing.  It takes more than just coming in contact with the virus - it takes some heat and friction to get it into the skin. The skin on the buttocks, thighs, back etc is thicker and more kerantized than the skin on the mouth and genital area so the virus doesn't infect it easily.  We all get rashes, insect bites, dermatitis etc from time to time.  

grace

[h8outbreaks]

Thanks so much for your thoughtfulness and yes I hope I get this cleared up quickly too.
Grace is very good at/with her advice, as she has helped me so much with my post. If she says it's doubtful it's hsv2 with your daughter, I would believe her and try and let the issue rest.