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PostPosted: Tue Jul 17, 2007 10:08 am 

Joined: Tue Jul 17, 2007 10:00 am
Posts: 3
I am an HSV2 positive mom who is desperate to talk to another mother.
Recently contracted and having constant prodromes of tingles/aches and so concerned about passing it on or whether I may have already. I've yet to see a blister or sore on me but every rash/bump or pimple on my child sends me spiralling into a major depression.
I can't find a hotline to call. The ashastd.org is not free it directs you to a 919 number. Please someone who has young children direct me to a resource to talk with. :cry:


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PostPosted: Tue Jul 17, 2007 1:32 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Hey I'm free sweetie :) Of course feel free to send me a dozen krispy kreme's should you find my reply helpful...he he he ( I originally was going to say I"m cheap but that just sounds so wrong...he he he )

Herpes is transmitted thru direct skin on skin contact with the infected area. With genital herpes that means our genital area. As a parent - you are not having the type of contact that it takes to transmit the virus to your children. the rule of thumb is unless you are being intimate with someone - it's not an issue. The virus is easily killed with soap and water so just basic hygeine is all it takes - wash your hands after using the toilet or touching your genitals ( doing a visual inspection or masturbating - not just after scratching thru clothes or adjusting your panties ). The virus will not survive the laundry or get transmitted thru sharing a toilet or tubby with other family members. You have nothing to worry about from that standpoint! Everyone in a household should have their own towels, washcloth, toothbrush and razor - for reasons far beyond herpes since other germs are very commonly transmitted thru sharing them.

So how were you diagnosed as having hsv2? Did you have a blood test? If so we'll gladly take a look at the results of it to let you know if you were properly tested or not. Constant aches and tingles isn't likely to be due to herpes even when you do have it. Has your gyn tested you for yeast and bacterial infections and such yet?

betsy


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PostPosted: Tue Jul 17, 2007 2:59 pm 

Joined: Tue Jul 17, 2007 10:00 am
Posts: 3
I have very constant tingling and irritation and although I keep going to the doctor nobody knows why. I was given meds for Vaginitis which helped with redness and some pain. I have had 4 negative HerpeSelect blood tests and the last one was at 6 months. I then made the mistake of sleeping with the person I am seeing....because I thought I couldn't have it after so many tests. Well, I was wrong. Terribly, terribly wrong. Now he has sores and achey back/legs and was sick with "flu" for a week. I searched and searched the internet for information only to find out that at 6 months a blood test is only 80% accurate if you are already hsv1 positive. (Which most of us are!)
I've hurt everyone I love...and I don't know how to fix any of it. I haven't told him yet what I think is really wrong. I think I must be HSV2 positive orally as well which is probably how my child got it.


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PostPosted: Tue Jul 17, 2007 5:07 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
You are very unlikely to be one of the few who didn' t test + by the 6 month mark. 4 negative tests is a pretty darn indicator thatyou don't have genital herpes. Has your current partner been to the doctors to find out what is going on?

A vulvodynia specialist is a good idea for yourself. Check around to see if you can find one. If you can't, then look for a dermatologist - some have a special interest in diseases of the genitals.

You think you have hsv2 orally which is how your child got it too? why do you even think that you transmitted this to your child? Also the vast majority of folks who have hsv2 orally ( of which is only a small percentage anyways ) only shed the virus orally about 1% of days and it's incredibly unlikely to be transmitted. Also I really hope you aren't kissing your child the way you'd have to kiss in order to transmit the virus - the kisses a mother gives to their child isn't enough.

It sounds like you are really letting this all do a number on you :( You need to calm down about this a bit and stop letting yourself think you are a walking biohazzard who is spreading herpes to everyone she's around. It just doesns't happen that way. What does your own doctor say about all your fears?

betsy


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PostPosted: Fri Jul 20, 2007 11:37 am 

Joined: Tue Jul 17, 2007 10:00 am
Posts: 3
Betsy,
Thank you for your encouragement and support. It has been six months of swinging being low and lows so deep that I can't even stand up or function. I don't know how it may have transferred to him but I really believe it has. My first waking feeling every morning is an incredible dread and heartbreak. I really thought it was all in my head when I got the last negative result and I was so happy finally and actually had a beautiful weekend with my son.
If my significant other had not come down with symptoms I could have accepted that result and moved on.
Last week my son got a blister on his calf. My first thought was a splinter or something. So I poked it and it popped. Two minutes later it washed over me like a tsunami. He just developed another pimple on his hiney and he gets a recurring red rash, usually symmetrically on both sides n his lower back/hiney.
When I first went to see my OB and told her that I had been exposed, my first question was about my son. She said don't worry about it, it doesn't transfer...etc etc. I did the hand washing (not 30 seconds as I've now read is appropriate). But I also checked every itch dot or pimple on me or him. I now wonder did I leave some under a fingernail or not wash enough?
The worst part is that I can't keep functioning like this emotionally and I just want to end this torment. I'll go get tested yet again in another month. But if a positive result confirms my worst fears I don't know how to survive the impact. I feel like I have to be here to see this thru because I have done this to them but how do I live with myself and how much hurt I've caused others? Yes, I'm probably going to try calling a crisis center. I dont' know how much they can do for me because they can't make this go away. I'm at my desk at work bawling my eyes out as I write this. What a mess I've made.
Sure would help it the tingling and now leg/back pains would let up for more than a day....Sorry to dump on you....


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 Post subject:
PostPosted: Fri Jul 20, 2007 3:48 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Your son doesn't have herpes on his leg and everywhere else. It sounds like perhaps y'all are passing a bacterial infection or something back and forth to each other. You both need to follow up with doctors and find out what is really going on. This could be a zillion things that have nothing to do with herpes. Stop sitting at home letting yourself get depressed - take the bull by the horns so to speak and seek out additional work ups for all of you with a dermatologist to find out what is going on and get treated properly.

betsy


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 Post subject:
PostPosted: Tue Jul 31, 2007 11:33 am 

Joined: Mon Jul 30, 2007 3:32 pm
Posts: 6
Reading this story is like watching someone else living my life for the past 3 months. I too am quite certain I have passed hsv-2 along to my 5 year old daughter. I am sorry I have no helpful resource info for you but I coldn't believe that someone else would be going through what I am with the depression and all and thought I would respond on that basis only.
My story was that I drank from my daughter's milk straw just once and a few hours later that evening I felt this painful pimple in the middle of the lip and just went into this deep depression realizing what I had just likely done to her. How could I have done that, I knew never to share such things"just in case". I had never done it before, or clearly since, but it was a long day and I was not thinking clearly and we were waiting in our van for my other daughter and ....history.
I was taking valtrex too at the time and still this unusual stinging pimple came out in the middle of my lip, not on the fringe like my regular cold sore outbreaks were. And there was no "prodrome" as I would have with hsv-1 so I'm certain it was hsv-2. Unfortunately trying to have a child tested for a herpes type serology is very difficult where I live and I'm just sick about it all. I'm still fighting for this test, and in the meant time I have tried this alternative called LILT, which claims it can reduce recurrences but not cure.
I hope your situation comes out as betsy describes in that it is something altogether different. It is the most awful feeling to think I may have burdened my child with this now for the rest of her life. It stinks! Psychologists, doctors, friends, nobody can take away the anguish for any length of time. I can only hope that there is a cure so that I may kiss and hug my children and they can do the same to each other as we used to do before this.
I pray someday there will be a way to kill or deactivate this virus. I check the web every week for new research and discoveries on this virus but of course, as the Infectious Disease lady told me, there is nothing coming in the next five years and there are too many other more seriuos diseases that come first for research dollars.......comforting...........If only there could be fund raisers and donation organizations for herpes research the way there is for heart disease and cancers. Here we are alive, which is a good thing, but herpes can be fatal medically and personally. If so many of us are living in depressed states and suffering because of our herpes situation why is that not enough to justify more funding for a permanent solution for herpes?
I, like you, have constant tingling and it drives me mad and makes me so grumpy, then my children begin to think it's them I'm angry with. How proud does that make me? It makes me even more miserable and I cry lots. My oldest daughter has become very sensitive to the fact that I might be crying and she checks lots. How healthy is that for a little girl? I'm getting better but likely only until the next appearance on one of my children and I will be sent into deep depression again.
I think there is a way to eradicate this virus, it's a matter of time and money, mostly money. If there are those brave enough to tune into a herpes dating website why not then a reputable reliable place for funding to be received for herpes research. If 50+ million US people are estimated to have hsv-2 and they each gave $10 I think that makes $500 million dollars....


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 Post subject: toughlife
PostPosted: Tue Jul 31, 2007 3:38 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
I think you are totally panicked about this and need to step back and take a look at this more realistically. first of all - hsv2 orally rarely reoccurs and when it does - it doesn't appear any different than hsv1 orally does. I would not even remotely suspect that this pimple on your lip was hsv2 because it didn't feel like your regular cold sores. From the sounds of things - this might not even have been oral herpes going on that you are so worried about. Worst case scenerio this was a hsv1 lesion - even at that - just drinking out of your child's drink isn't likely to transmit it at the age of 5.

Also you can not get your 5 year old child blood tested for herpes. The blood tests we have today are not accurate to diagnose herpes in children under the age of 14 so don't even waste your time and money. If your child gets an obvious cold sore and you really feel the need to get it cultured then see the pediatrician within 48 hours of its appearance. No obvious cold sores, no reason for your child to get tested until she is sexually active and has a need to know her herpes status.

So you are participating in the laser treatment trials for oral herpes?

betsy


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 Post subject:
PostPosted: Tue Jul 31, 2007 4:21 pm 

Joined: Mon Jul 30, 2007 3:32 pm
Posts: 6
You sound like my husband re stepping back and stop panic!
And of course I agree with that and I accept that a lot of this grief comes from my experience in acquiring hsv-2 (I did not get it from my husband).

I so hope my daughter has nothing ever again but if she did I would be so much more able to cope if it was hsv-1, even though the docs say a cold sore is a cold sore. They don't own it like I do. I have it all the time it seems. I wasn't aware the test was ineffective on children so thanks for that.

Re the Laser therapy, are there actually trials going on with respect to herpes and LILT?? I live in an area where there very few trials of any kind so I have pursued that therapy on my own. I'm told laser therapy itself works particularly well with children (something about their mitochondrial content in cells?) and I suppose their small size would make the light that much more effective. Although I'm not saying that with respect to herpes in particular because of course low level laser therapy is historically based in pain therapy, arthritis and the like. I opted it for it because of the lack of side effects and I joined her on it so she wouldn't feel isolated and oddballish doing it on her own. And of course then I would get a better idea of what's what with this new therapy. I haven't tried it for genital yet because I haven't worked up the nerve to ask for that treatment. The therapy is not conducted by MDs, they are laser technicians, and you could get a different one each time so I'm not comfortable with the confidentiality of it all yet. But I'm not giving up on it, it seems to have some credence in my opinion.


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 Post subject:
PostPosted: Tue Jul 31, 2007 5:24 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Wait - you have your daughter going thru this ? I assumed it was just you doing it. I really have to question any clinic that would agree to do this on a child when there is no evidence of any oral herpes infection on a child that young. What does her pediatrician say about this?

There have been trials in the past with light therapy and herpes. You can find them on pubmed.gov to learn more. Everything I've read in the past on it was only for speeding the healing of ob's - I don't recall anything about it reducing future recurrences but it's not something I"ve kept up on.

betsy


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 Post subject:
PostPosted: Sun Aug 05, 2007 8:29 pm 

Joined: Mon Jul 30, 2007 3:32 pm
Posts: 6
You judgement of my decision to put my "daughter going thru this" sent me back to the guilt and depression that I felt three months ago when the unspeakable happened. And I'm having a particularly bad day today because she's been saying her bottom lip feels "funny" and I can't see anything (the original ob that I spotted was on her top lip) yet.
I have an older daughter who has eczema and I'm worried if she ever gets a "cold sore" that she will have to cope with dermatitis herpetica or whatever they call it.
What have I learned from this? That passing it on is inevitable? Do I have an incredibly contagious form of this virus? That I can't protect my children from myself? I'm mad at myself and that horrible feeling also flows over to them and I find myself having a short fuse in situations where I would have previously been unconcerned. I am becoming the sour Mom that I don't want my children to know and it's a never ending spiral downward. Why are these tears always so close to the surface? Is there noone who gets what I'm feeling? I am just so sad. I see women kissing their children and sharing their food and drinks and I just feel like they are better connected to their kids than I am. I wish someone could help.

By the way, their is a pubmend article from 1999 with Schindl and another later one done out of Cuba, I think, that discuss the benefits of laser as a preventative measure.


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 Post subject:
PostPosted: Mon Aug 06, 2007 12:10 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
have you thought about professional counseling for this? It really seems like you are making a lot more out of this than you need to be. Perhaps there's a lot more going on than just the potential for your daughter to have oral herpes and you need to deal with it all better?

betsy


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PostPosted: Mon Aug 06, 2007 6:59 am 

Joined: Mon Jul 30, 2007 3:32 pm
Posts: 6
I've tried a psychologist and maybe now I should try a psychiatrist. I'd like to avoid drugs if I can.
No there's not more going on besides the passing of "oral" herpes, ie she had what I saw to be a cold sore lesion on her lip in April, 4 days after we shared a straw of milk (big mistake). She also caught pink eye a few days later and I was told that a secondary infection is quite common when you get your first infection. It never crusted or anything like that and the pediatrician said it was likely because we got to it quickly (We saw him on the second day of me noticing the infection). I was told it was a "mild" infection but infected is infected. End of story.

I have had cold sores since I was a kid and was always self conscious about it and I was "shocked", to put it mildly, when I received genital herpes 15-20 years ago. It was my second boyfriend and my second sexual partner. Obviuosly not so for him, he was the quintiscential bad boy. My husband is the third and will be the last. I finally came to manage that it wasn't the end of the world, with the help of my husband, and since "94 was successful at not passing it to him for many years.
I guess what I'm saying is that I had learned to live with the fact that I have this thing (and it feels like I always have it genitally and now orally more often too) but the idea that my child/children will have this and it's because of me and they are so young, well, it's more than I can cope with. If this virus would infect and that's it maybe that would be even easier but I know that they can reinfect themselves elsewhere if they're not careful. And if I can't be careful, then how can I expect it from a child?
I always thought I could keep this from them, knowing how miserably depressed it made me in my life, I always thought that I would never make that mistake. The first psychologist said "never say never" but I'm a perfectionist and a nervous person anyway, especially with my children, so this has put me over the edge. I can see what it's doing to me but I'm having a tough time turning it around.
My two girls are my everything. With my husband's love and then their safe arrival healthy and happy, I felt like God had given me a second chance in life, and I was thankful for it and I was determined not to let him or them down. I am a stay at home Mom so we spend a lot of time together. My Mom was a stay at home Mom and the closest thing to a "saint", in my opinion, as I have met on earth. I took precautions like never bathing with them or even swimming. How badly she wanted me to join at the pool for birthdays parties, and how badly I wanted to, but I wouldn't. Your children are supposed to be able to trust you, they look to me for whether it's ok to eat something junky or play with a special toy or teach them when it's safe to cross the street, etc and I feel like I've let them down horribly. I feel l don't deserve them, these perfect innocent beings.
Is that extreme? Wouldn't any Mom feel this away about passing a life long virus along to her children? I can't fix it for them and it's killing me. My husband says that I see them as damaged now, and he doesn't. Perhaps there's some truth in that, I've hurt them, in a sense. Before "this" we had an idyllic life. They wrestled, they kissed, they bathed together, played otgether. They are two awesome girls who are good friends, and that's what I was trying to foster with them and was doing ok, if I do say so myself. But now I jump at the moment there is close contact between them to try and teach them the "new" way. Ironic thing is ithat I'll probably be the one who messes up again and then were will I be?
They lost their Grandpa in February and that was hard and I failed at getting them there on time (not late but not early as was expected) so I felt I failed there too, and I'm 40+ so I suppose there could be a hormonal thing going on . But I feel all that I could have managed except for this one last thing.
I'm feeling completely imcompetent. I just want to be rid of this virus so I can safely kiss and love them with joy and passion, but I won't because I'm nervous about what I'll pass to them. Then the simple sharing of a straw takes all those years of precauton and flushes it down the toilet. I'm devestated and tired of having herpes run/ruin my life. I want my life back. I was actually a happy person before this, as confirmed by my GP.


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 Post subject:
PostPosted: Mon Aug 06, 2007 9:02 am 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hi ToughLife,

Just wanted to jump in and say I can tell this is causing you much anguish and I'm sorry things seem so difficult. I'd like to add that you can take the advice of our esteemed HSV expert, BetsyB, to heart. The likelihood you would have exposed your child to herpes simply through sharing a drink is slight, at best, and it's never really been well documented that the virus is actually transmitted in this manner - a small theoretical risk at best. You can rest assured that whatever is going on with your child, it almost certainly has nothing to do with you taking a sip from her drink.

I think you're similar to many parents in expecting too much of yourself. You love your family so very much indeed, and coupling that with what you describe as your need to try and attain perfection is bound to be stressful. You perhaps feel the need to be do everything "Mom related" just right but if you ever sense you fall short in this (as we all do), then you get down on yourself. That's a great deal for anyone to shoulder.

Take care of yourself, and when in doubt fall back on the insights offered by researchers and experts, articulated so well on this board by Betsy.

All the best,
Fredo

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ASHA Moderator


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 Post subject:
PostPosted: Mon Aug 06, 2007 1:41 pm 

Joined: Mon Jul 30, 2007 3:32 pm
Posts: 6
Agreed, I did not intend any disrespect to anyone.
I appreciate being able to pen my thoughts, it is indeed a very difficult time for me.
Thank you both.


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