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National Cervical Cancer Coalition


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PostPosted: Sun Apr 18, 2010 10:34 pm 

Joined: Tue Mar 24, 2009 11:37 pm
Posts: 29
Hi Betsy,

So it's been over a year since I've posted anything on the board but I'm still having problems with frequent OB. Here's a quick break down of my case:
-It's been a little over 2 years since I was diagnosed with genital HSV1 by a culture taken on the lesions AND three blood tests. HSV2 always negative, HSV1 positive. Of course the culture is the only sure bet.
-I was experiencing OB every month sometimes two or three times a month on suppression medication for almost a year.
-I used Acyclovir to start (avg. prescription) and then Valtrex (went from 1 500mg a day, 2 for OB to 2 500mg a day, 3 for OB when the once a day wasn't working)
-Had every possible blood test and STI test done all of which came back negative.

Since last July to this March I was taking one gram of Valtrex a day for suppression and it was working for about five months during this time since I had no OB's. Then ever since this February I've been getting it every other week or so, once every week for the past month.
So I went back to my doctor and explained how my symptoms are generally mild and no real lesions appear but these new small pimple like dots were appearing on the bottom of my buttocks and usually I get my OB in the anal region and is more rash like. She explained that didn't sound like herpes so to come back when the OB occurred to do a culture test.
The pimple like dots are finally gone after about a month long of reoccurrence but my usual rash like OB around the anal region is back.
I went in and she could barely recognize what I was talking about but took the culture anyways. She prescribed 250mg of Famvir (twice a day) and an antibiotic just in case it wasn't herpes and it was a bacterial infection. The results came back and YES it was positive for HSV1 and all other STD came back negative so she had me stop taking the 4 pills a day for seven day of the antibiotics.
My insurance only covered the generic version of Famvir so that's what I've been taking the last three weeks and STILL have had two OB since. The same red rash like OB around the anus and the time before that an actual small lesion in the area.
SO I have been stressed lately these last two months but no more stressed than I was during those five OB free months. Can being really stressed cause this many frequent OB? Even on suppression therapy?
I'm meeting with my doctor again this month for a follow up and all she said she could do is maybe refer me to a skin specialist even though and I quote "It's only herpes," she said. That may be the case but it sure as hell is causing a huge inconvenience for me and my boyfriend who is HSV free and has been tested for everything else as well. It seems we can only have sex like four or five times out of the month with all of this going on. We have been together for 8 months, 5 of which we have had a sexual relationship.
ANY insight would be appreciated Betsy. Thank you :)

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PostPosted: Mon Apr 19, 2010 8:33 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
honestly at this point I would stop all the herpes antivirals. Go back monthly as needed and get anything going on looked at. this isn't all herpes going on and if you don't clear up what else is going on, your herpes isn't going to settle down either. obviously all the increased herpes antivirals aren't helping and perhaps not being on them will help you and your providers better figure out what is all herpes related and what isn't.

you should be getting tested vaginally for yeast and bacterial infections each visit too.

A dermatologist is a good consult at this point too.

betsy

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PostPosted: Mon Apr 19, 2010 10:49 am 

Joined: Tue Mar 24, 2009 11:37 pm
Posts: 29
Thanks Betsy :) The problem now is they can't figure it out, all four doctors I have seen. I had the culture done and it came back positive for HSV1. Is there a certain direction I can point them towards? Is it possible that I get an infection while having an OB or something else? She gave me antibiotics last time and that didn't do anything. It's not me I'm worried about but my partner. It's incredibly frustrating and hard to handle that this piles on to my stress.

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PostPosted: Mon Apr 19, 2010 10:56 am 

Joined: Tue Mar 24, 2009 11:37 pm
Posts: 29
OH and one more question and observation in all of this. During those five OB free months with my bf, we used condoms from start to finish, now not so much. No matter how faithful I know he is I still had a thought that maybe he gave me something. He was tested again and nothing. I was tested again and nothing positive except herpes. Can I possible be allergic to him even if though these symptoms occur without having sex with him? Or can sex irritate me and cause an OB?

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PostPosted: Mon Apr 19, 2010 10:57 am 

Joined: Tue Mar 24, 2009 11:37 pm
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My doctor simply thinks my stress is causing these frequent OB

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PostPosted: Mon Apr 19, 2010 1:34 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
so many things can be going on in our genital areas. If condoms were working before, why not try them again?

are they testing your vaginal secretions for yeast and bacterial infections at each visit?

It's not going to be herpes flaring up 2 and 3 times a month like this.

betsy

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PostPosted: Mon Apr 19, 2010 1:59 pm 

Joined: Tue Mar 24, 2009 11:37 pm
Posts: 29
Yes, I was thinking of using condoms again (the entire time lol) but like most people after a while we decided not to. I'll try this out just to cover all bases on what this could be.

No, they didn't test for yeast infections this last time but I have a follow up next week so I will ask to do it again. Also, most of the time I'm on my period when I get an OB. Not always but a lot of the time so that's why I can't really be seen or have vaginal/yeast infections tested.

The OB also only lasts 4-5 days start to finish when I take the medication. Sometimes it's gone sooner so by the time I actually can get a doctors appt., there's not much to be seen or it's gone. This last time they were actually able to culture something. Also, when I stopped taking the medication during an OB, I could really tell the difference so I took it after 3 days of having the OB and it went away after two or three days of taking the amount of medication needed for an OB (came back a week later though).

I'm just trying to do my best in figuring this all out not just for me but for my partner. I finally came to terms with having it but the constant OB's make it SUPER hard for it NOT to inconvenience my life. Especially because I love to work out a lot and I stopped doing so as much because of the irritation and the fear that this may be causing it. I changed underwear type, loofas, soap, and even thought it might be something I was eating. Anyways, thanks for your continued support Betsy. Any info or similar problems others are experiencing and their outcomes would be really appreciated.

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PostPosted: Mon Apr 19, 2010 2:09 pm 

Joined: Fri Jun 05, 2009 7:37 pm
Posts: 144
hi, i just wanted to chime in and tell you that i feel you pain. i too have genital hsv 1 (i have oral as well) and my ob's are constant in both areas. i've been tested for everything - yeast, bv. all come back negative. i am under a lot of stress - divorce, loss of job, etc. but honestly, this is too much. how are we supposed to forget we have herpes with this constant reminder.

if you find out anything please let us know. i am on acyclovir, which isn't helping, but am afraid to stop for the fear of it being worse than it already is.


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PostPosted: Mon Apr 19, 2010 7:10 pm 

Joined: Tue Mar 24, 2009 11:37 pm
Posts: 29
Informed,

Yes I'll keep you posted on any new info my doctor provides. I feel your frustration. At first my doctor (one of the many) said it's type1 genital that doesn't occur as often so you shouldn't have any problems dealing with your normal life. In the last two years it has been hell and incredibly frustrating especially when all they can say is this shouldn't be happening and have no idea what else it could be :( I hope to have some insight in the next year.

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PostPosted: Mon Apr 19, 2010 10:44 pm 

Joined: Fri Jun 05, 2009 7:37 pm
Posts: 144
thanks help. i just completed a year...into my second. fingers crossed for both of us. i will keep you posted as well.


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PostPosted: Wed Apr 21, 2010 2:18 am 

Joined: Tue Mar 24, 2009 11:37 pm
Posts: 29
My first year was horrible emotionally and the constant OB made it almost unbearable. It wasn't till the end of last year I had some stability with the OB's so for it to be starting up again is frustrating. Just know emotionally it get better so hopefully so do the OB's :)

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PostPosted: Wed Apr 21, 2010 9:39 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
the vast majority of the time, it's not all herpes going on when folks are having non-stop symptoms. It's well worth further evaluation to figure out what all is going on because if it's not herpes causing all the symptoms, all the herpes antivirals in the world aren't going to make a difference.

betsy

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PostPosted: Wed Apr 21, 2010 9:14 pm 

Joined: Sun Apr 04, 2010 5:04 pm
Posts: 1
Location: Michigan
How do the other infections occur? If herpes is contracted via sex, are the other infections STDs as well? Is there a good way to prevent these additional infections?


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PostPosted: Fri Apr 23, 2010 12:32 am 

Joined: Fri Jun 05, 2009 7:37 pm
Posts: 144
betsy,

i have a question that there just may not be an answer for. how come some people that have ghsv 2 also gave oral sex and don't get ohsv 2? and, some get both?

and the same for hsv 1. how come some people that get ghsv 1 don't get ohsv 1 as well? likely they also kissed the person. and, again, some people get ghsv 1 and ohsv 1...


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PostPosted: Fri Apr 23, 2010 7:17 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
To greatly simplify it, hsv2 doesn't "like" the oral area. It can infect there but it doesn't do so frequently.

What few studies we have on oral and genital acquisition of hsv1 show that anywhere from 1/4 - 2/3's of folks who contract hsv1 genitally also have it orally. Those studies only looked at obvious cold sores if I recall. we don't have good studies that have folks recently diagnosed with hsv1 genitally doing oral swabs for a month after wards or anything to pick up on just shedding. Most folks who contract hsv1 orally, don't get obvious cold sores to know it.

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