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Not responding well to Valtrex
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Notcopingwell posted:
I was diagnosed with genital herpes 10 months ago. I had a horrible first outbreak lasting 2 months. For 7 months, I have been on 500 mg. twice daily Valtrex but have still had numerous outbreaks since that time (one lasting 6 weeks with only one actual sore that would not go away). I started having a rash on my buttock four months after the initial outbreak and saw my regular MD numerous times and he did not see any signs of active herpes so did not feel they were related. He put me on the daily twice daily 500 mg. Valtrex mostly to ease my mind at that time. He did refer me to a dermatologist who gave me medicine but saw no signs related to herpes. The rash on the buttock is fairly well gone most of the time except for a few "pimples" occasionally. My MD has been very understanding but I feel he really doesn't think I have symptoms and outbreaks as often as I feel I do. I am having one now after having the six week episode only three weeks ago. In addition to all of this, I met someone very special about a month after my diagnosis and have been establishing a relationship that I feel is serious. I told my partner early on and they visited my physician with me but I am paranoid all the time about passing it along. I only see my partner on the weekends so it has been tough. I literally feel that I have had symptoms all but maybe 2-3 months out of the 10 months continually. We have a very active sex life that is very important to both of us and use alternative methods. Can someone have symptoms this often? Can anyone suggest something to try? Should I see a specialist?
Reply
 
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abe648 responded:
How were you diagnosed as having herpes? Was it a swab/culture that was typed or an IgG type specific blood test? Do you know if it is HSV 1 or HSV 2 genitally? If it was a blood test can you call your MD and ask for a copy of the numeric test results from an IgG blood test and post them on here so Terri or Betsy can confirm your status.

If the Valtrex is not helping when you are taking the equivalent of 1 gm per day then it most likely is not the herpes that is giving you the problem. Herpes with this dosage would give you few ob's amd you should be able to control your herpes with perhaps 1 or 2 ob's during that time frame.

If the Valtrex is not working then it is indicative that what is bothering you down yonder does not seem to be herpes. Even your MD did not see any signs of herpes and the dermatologist did not see any signs of herpes either.

If you could tell us how you were diagnosed then that will help us to see if any further testing is needed.

Have you read the Herpes Handbook located in the Help Resource section on the right hand side of the exchange.
 
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Super42 responded:
I have had symptoms almost continually since infection seven months ago as well, and the Valtrex 1 gram suppressive therapy is completely ineffective for me. I am HIV negative and have been repeatedly screened for vaginal infections, all negative. I do all the "right" things. I completely believe that you have had nearly continuous symptoms. I really feel that there are more resistant strains out there now and that they are in the general population and not just the HIV/AIDS community. If ninety percent of those infected with HSV2 are unaware, than how do researchers know that acyclovir resistance is so rare? I hope that this issue will be addressed more thoroughly in the second addition of The Good News about Bad News. For some of us, there is still no "good news", it is still devastating and robs us of one of the most wonderful things in life-sexual intimacy with a partner.
 
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Notcopingwell replied to abe648's response:
I believe I was diagnosed with a swab test and had active "lesions" at that time; a few of which were cauterized at the time. I put in a call to my MD today but did not get a call back today. He only sees about 1-2 new cases a month in his practice so I am unsure how familiar he is with herpes. I will ask them for a copy of the results so I can have some exact data to share.

As for the OB's, the current one is the worst since the initial with about 7-8 fairly good-sized red "pimples" with heads. They are larger than I have been getting. Most of the other OB's were only 1-2 areas and usually only one site that lasted for 5-6 weeks. There is usually a burning sensation at the time so I am fairly sure it is associated with the herpes.

I will post the results from the test I had last July in the next day or two so hopefully you can help direct me in the right direction with some concrete data. Thank you for your help.
 
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Notcopingwell replied to Super42's response:
Has your MD had any suggestions for you or have you been treated by a specialist? I know the frustration and devastation that you are experiencing and hope that there is some help for us through this networking.
 
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betsyo1967 replied to Notcopingwell's response:
odds are you have more than just hsv2 going on. Hsv2 won't reoccur like this and linger like this especially while on daily suppressive therapy.

have you been getting tested for yeast and bacterial infections vaginally too?

At this point, continue to follow up with the dermatologist every time you have symptoms to try to figure out what is going on besides just herpes.
 
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Super42 replied to Notcopingwell's response:
I have received lots of sympathetic head shakes and shrugs. I also find that because clinicians have to deal with so many people with lint for brains, it is assumed I don't know what I am talking about when I say-I have had continuous herpes symptoms. I know what a pro-dome itch means, where it occurs, what it feels like. I know what a lesion looks like, feels like, coming and going. I have no aversion to getting a mirror and checking, I can SEE them, I can FEEL them, I am not making more out of razor burn or heat rash. It is beyond frustrating. I have an appointment in two weeks and plan to demand some new help or the name of a specialist, but I am not holding my breath. Based on reading a ton of message boards I also know I am not the only one, but those of us who present this way are routinely dismissed as hypochondriacs or infected with HIV. I am neither.
 
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betsyo1967 replied to Super42's response:
we know that acyclovir resistance is rare because we've been studying it for over 25 years now. It's actually tk deleted strains of the virus and they were present even before acyclovir was discovered. There are really good studies done on this and they periodically do them ever few years to keep and eye on things. the rates of resistance haven't changed in over 25 years.
 
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Notcopingwell replied to Super42's response:
I totally agree with you. I went back to my MD today and his examination still says that I have no active herpetic tendencies. He says he has not seen any and does not feel I have had any since being diagnosed in August, 2009 even though I have about 7-8 spots at the current time. I did have another blood test today to do some testing and should have the results in a week. It is hard to become "normal" when you still have red "pimples: but the dr. says they are not herpetic. The relationship I am in occurred within a month of the diagnosis and it has been extremely difficult to know how to react. I feel that the relationship could be "the one" and wish I could be sure of my symptoms. I would be interested if anyone has any similar symptoms and/or suggestions.
 
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betsyo1967 replied to Notcopingwell's response:
not everything that goes on in your genital area is due to herpes even when you do have herpes. Your provider not seeing anything that looks like herpes is a good sign that indeed what is going on isn't herpes. You also were seen by the dermatologist who also didn't see any signs of herpes being active too it appears.

follow up with the dermatologist monthly as needed. odds are that what is going on isn't due to herpes. if it's not herpes going on, all the antivirals in the world aren't going to help.
 
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Super42 replied to betsyo1967's response:
Well, every time my clinician checks she says "yeah, I see a couple tiny ones". I am not imagining sores, they're there. So maybe a better question would be, if it's not HIV and it's not a vaginal infection-what else could it be? What else should I have checked, what other tests should be run. That is an answer I can't get from anyone. Right now I want to make sure that anyone who is considering sleeping with an HSV2 infected partner knows what COULD happen. Sure, you could never have symptoms, or you could have symptoms seemingly constantly. It would never have been worth the risk for me had I been given a choice.
 
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betsyo1967 replied to Super42's response:
your provider needs to be doing lesion cultures, not just saying "yes these look like herpes". they can even give you the supplies to do daily pcr swabbing at home to help you get better answers as to if this is all herpes going on or not.
Talking about std testing is NORMAL and something we all should be doing EVERY TIME before we have sex with a new partner :)
 
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Notcopingwell replied to abe648's response:
Thanks for all the info I have been receiving.

I got my blood test results back today and this is what it said:
HSV I/II IgG 4.6 H

Thanks for any info/suggestions you can give. The "pimple" type marks are clearing up and seem to be doing better.
 
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Notcopingwell replied to Notcopingwell's response:
Also, does that mean I was symtomatic last week at the time of the test?


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