Is there such a thing as viral drug resistance for herpes?

[OutOfWit]

Hi everyone... I have a few questions. I have been on and off the forum over the past year. Now everything is coming together at least for me although I have not ever had a positive genital swab. Since I was a child I have suffered from cold sores about once a year. Because of this when I started experiencing non-classic symptoms of genital herpes I was told it could not be genital HSV 1 because my body would have immunity to the virus. I have no idea how I contracted it genitally but about 8 years ago I started having strange vaginal symptoms about every month worsening after the birth of my daughter. Sometimes the cultures would come back yeast, sometimes BV sometimes neither. I did not have any sores or lesions that I knew of- just itching like crazy vaginally anally and lots of discharge. Doctors thought I was crazy and I started to feel crazy too. It went on for about a year and a half, until I met my current fiancée. Then it disappeared and I felt completely normal for a while. My fiancée and I broke up for a short while- I was not with anyone else and I started experiencing paper cut like lesions. Very small only the diameter of one of these letters typed now. Doctor said it could not be herpes. Meanwhile I was starting to get oral outbreaks like mad. My lips, tongue strange spot on my eyelid even my chin. So I talked to my doctor and they put me on acyclovir. It worked like a charm. The herpes would go away within days. After about a year of taking episodic therapy I noticed the drug was not working as effectively as it had. I was experiencing bladder symptoms and diagnosed with interstitial cystitis. I talked to the specialist and he changed me to valtrex 500mg everyday suppressive therapy. But I began to notice the same thing. It became less effective and I was still getting frequent oral outbreaks. Now fast forward to this year I had an accidental fall with rectal trauma and started to get crazy symptoms... Rectal pressure fissures- feeling like something was stuck in the rectum, leg pain pins and needles- buttock pain. Now finally I am having lesions on my anal area. True lesions that hurt like hell. The skin feels like it was peeled off and I swear I can feel every nerve ending when I am touched there. Since the fall/trauma I have had these symptoms almost every month lasting for three weeks and only remitting for one. Doctor saw the lesion and said it looked like herpes but swab was negative. But he does believe it was herpes. The only connection between the two periods in life that I have had constant outbreaks is birth control. The first time I was on the mirena and the second time I have been on estrogen replacement for my bladder condition. I experimented with going on birth control and the outbreaks worsened. I recently went on vacation and I thought I was getting bug bites but broke out in a herpes rash on the thigh calf and ankles. I looked it up and it said you can have disseminated herpes and that is very dangerous. I am not sure if I should continue the valtrex because it does not seem to be doing much good and am do scared that it seems with time this is all getting worse. I have started l-lyseine. Can anyone help me?

[Bslydell]

In my opinion you should get checked out by another doctor. Possibly an infectionous disease specialist. I am knew to being diagnosed so I am not much help. I get the tingling/burning feeling, but have yet to get an outbreak. I hope I stay that way.

[hereandnow]

I started with Acyclovir...at one point my Dr. had me on 4000mg a day for 10 days. The dosage they give for Shingles. It helped, but only at really high doses. Then I read that Valtrex (Valacyclovir...) is the prodrug or precursor to Acyclovir. That means when you take Valtrex, your body turns it into Acyclovir. One benefit to this is that much more of the drug gets into your blood to stop the viral particles from attaching to new cells, AND the drug stays in the blood and cells longer than plain Acyclovir. I had my Infectious Disease Dr. switch me to Valtrex a month ago. My outbreaks seem to be healing better and are much less painful...but it is NOT stopping them/preventing them. I am taking 2000mg a day of Valtrex (a lot), but am assured by my ID Dr. that months of this is perfectly ok while my body learns to fight. I am at 4 months today, so will stay on Valtrex another 2 months solid. Have read also that time with the drug and consistency is important, even time of day each day. If at 6 months I have not seen drastic progress, I will move on to Famvir. I do believe that certain bodies may not respond as well. As for resistance, I am sure its out there. I have to tell myself "think how much WORSE it might be without the suppressive therapy." As for side effects, I notice some tiredness here and occasional stomach rumbling, but nothing major thank god. Please try and get an appointment with an Infectious Disease doctor.

[OutOfWit]

Thank you! How long have you been diagnosed? That is scary having to take such high doses!

[WCSDancer2010]

I really think you should get to an Infectious Disease specialist ... or possibly an Immunologist ... sounds like your immune system is really compromised/out of whack.... if you are getting back negative swabs it's possible it's something else entirely that your GP wouldn't know about ... there's TONS of lesser known things that can be going on ... my gut says your immune system is the culprit ....

 

One other option is to talk to the people at Westover Heights ... they know Herpes better than 99% of the doctors out there and may have some insights for you ... they carge $5/min for consulting but in your case I would say that it would be well worth the investment :)

 

http://westoverheights.com/ (503) 226-6678