Frustrated!!!!

[karma721]

Dear Ms. Warren,

I was diagnosed with genital HSV-2 after a viral culture during the summer of 2008.  Ever since my primary outbreak I have been completely miserable living every single day with the constant reminder of this disease.  

After my diagnosis I was given Acyclovir for suppressive therapy which was very useless.  I continued to take the medicine as directed, however, it did not bring much relief and I was still constantly experiencing outbreaks.  My symptoms included frequent vaginal tingling (as well as in other areas), unbearable itching, vaginal fissures and sores which can be painful.  Nonetheless, I continued taking the Acyclovir with hopes that it would eventually control these frequent outbreaks.  

After a few months I went back to another doctor with hopes of getting a prescription for Valtrex which I have read is better for supp therapy.  At first, I was prescribed to take 500 mg of Valtrex daily for supp therapy and then to increase to 500 mg twice daily for 5 days when having an outbreak.  When my provider realized that the dosage was not high enough to control these frequent outbreaks the dosage was increased to 1 gram daily for supp therapy and 2 grams daily for 5 days when having an outbreak.  Even on such a high dosage of medicine I continue to have frequent outbreaks/symptoms (i.e. outbreaks with sores once every 1-2 weeks and the symptoms...tingling and itching-EVERYDAY since my dx)!!  

I have read many posts which suggest that in between outbreaks no symptoms of an outbreak should be present (i.e. no itching, tingling, etc.) and that these symptoms should be prodrome before an outbreak but for me its everyday.

Please help!!  I'm becoming depressed and this has consumed my life. I'm scared to even think of becoming intimate with my bf (who does not have HSV 1 or 2) b/c I always feel like I'm having an outbreak.  Do I have some mutant strain resistant to antivirals that will ruin any hopes for a normal life again?

Thanks!

[Blueskies66]

Karma721,
You just told my story!  I am in the SAME BOAT!! I have itching everyday as a result of HSV2 acquired Oct 2007.  I tried discontinuing the antivirals and I got a twitching nerve vibration in my labia area - but no itching - it just really hurt.  I'll take the itching over the nerve pain!  

There is a long post regarding this with Dr. Hook who stated from his research he does not believe it is related to herpes.  The unfortunate part for us is we know these symptoms started after contracting the virus.  Vaginal punch biopsies are painful, very painful!  Nothing was found to be abnormal with mine.

It is very frustrating that this happens frequently with HSV infections but has not been studied.   I feel your pain and know how depressed you feel.   Hang in there and keep looking for the answers.  

[Terri Warren, RN, Adult Nurse Practitioner]

I'll answer these three questions, then we need to end this particular thread - you can always start a new one.

Herpes is not a continuous symptom disease - you should definitely get symptom breaks
No long terms side effects from suppressive therapy that we know of
Stay on suppression until pregnant, then you can come off until the end closer to delivery.

Terri

[karma721]

Ok Thanks!  However, for my other questions could you please provide some clarfication...

1) Is it true that I should not have any symptoms in between outbreaks (i.e. visible sores, tears)?  Again, I continue to have the itching and tingling on a daily basis...It has not stopped since my dx.

2) Do you know of any adverse long term effects from taking such a high dosage of medicine for an indefinite amount of time? (i.e. My provider said my case was just very extreme but she has also had to put other patients on such high doses of Valtrex b/c of frequent outbreaks/symptoms but I'm worried about taking so much medicine indefinitely with hopes that one day it will all just stop/calm down.)

3) Lastly, I'm not trying to conceive anytime soon but my other fear is that when I do what is the safest way to do so without infecting my partner.

Thanks again for your help and input during this difficult time in my life.

[Terri Warren, RN, Adult Nurse Practitioner]

I didn't question whether you had herpes or not - I believe a positive culture from a lesion is definitive and if you look back at my response, I think that will be clearer.  I'm questioning whether all of your symptoms now are herpes - just because you have genital herpes doesn't mean that everything that happens in the genital area are due to the herpes infection.  I still believe that you need an evaluation when you have the symptoms and preferably a swab test to determine if these symptoms are herpetic.

Terri

[karma721]

Thank you very much for your response Ms. Warren! It's a little refreshing to think a professional such as yourself may think that even with the positive culture I may not have herpes (a little hope for a normal life)! The first few months after my diagnosis I did start to question whether or not I actually had herpes or maybe something else rare since it was not responding to the antivirals.  However, I thought this thinking was just me being in denial and I just let it go.  When I went to that second doctor she ran a blood test and it also came back positive to I figured well this is definitely it...There's no more denial!  Also, she ruled out the possibility of any yeast infection or something like that by tests. Would you recommend I seek out the help of an infectious disease specialist to make sure there isnt an autoimmune problem or something else that is being missed?  

Is it true that I should not have any symptoms in between outbreaks (i.e. visible sores, tears)?  Again, I continue to have the itching and tingling on a daily basis...It has not stopped since my dx.  Also, now the itching and outbreaks have started in a new place in the past 3 weeks (the top of my butt..near the crack (sorry)).  I read other posts which suggest they should be primarily in the same area for all recurrences which has usually been on my labia.  My provider said my case was just very extreme but she has also had to put other patients on such high doses of Valtrex b/c of frequent outbreaks/symptoms but I'm worried about taking so much medicine indefinitely with hopes that one day it will all just stop/calm down.  

Lastly, I'm not trying to conceive anytime soon but my other fear is that when I do what is the safest way to do so without infecting my partner.  

Thanks again!  I will definitely look into your suggestions because I cannot imagine living my life like this forever with no relief!! :-(

[Terri Warren, RN, Adult Nurse Practitioner]

The question is, are all your symptoms herpes, or not?  Just because someone has herpes accurately diagnosed, doesn't mean all genital symptoms ARE herpes.  You could easily have something else going on as well - a fungal or bacterial infection are possibilities, for examle.  The fact that high doses of suppression are making little difference leads me to believe that all of your symptoms are not herpetic.  For a patient like you, I would advise swabbing of the sores during the time they are there to see if they are herpes.  Continue taking your medicine as advised, but ask your provider for PCR swabs to take home, and at the first sign of these sores, swab them yourself and take the swabs back to your provider to sent to the lab.  You can do this more than once.  We have patients who do this daily, even, looking for viral shedding for some set amount of time, say two months. Many just do it with outbreaks, who are in situations like yours.  I don't believe we have ever gotten back a positive herpes PCR (polymerase chain reaction), while someone was one 1 gram of Valtrex daily.  If you were my patient, I would also have you back in my office, looking at these sores to see what else they might be.  I hope you follow at least one of these recommendations for trying to sort out what seems to be a very disturbing problem for you. I can certainly understand why you feel so frustrated (which is probably putting it mildly).  Basically, you need to find out if all of what is going on with you genitally truly is herpes.

Terri