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More severe outbreak months after initial outbreak, and while on suppressive therapy?


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Hoping someone can help me understand this. When I was first diagnosed in May, my symptoms were super mild...very small bumps down there that hardly seemed like anything more than a small irritation. Over the last few months, I have been on suppressive therapy and experienced constant podrome symptoms and nerve pain in my legs and butt, but no actual outbreaks. Then, in September, I switched from Valtrex to Acyclovir due to the constant podrome, and experienced the worst outbreak of my life down there with multiple bumps and 2 lesions that looked like canker sores and are still healing (it's been 4+ weeks now). It's just mind-boggling to me that my symptoms are getting worse with each month while on suppressive therapy. Is it possible that the anti-virals are making things worse? Has anyone else experienced this? Not sure what to do. :(

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  • 2 weeks later...

I'm having a really similar issue and I'm worried as well. I don't get nerve pain but I constantly feel tingling and itching, and there are always bumps and most of the time, one or more sores. I've been on both Valacyclovir and Acyclovir as well (first one, then the other, like you). My outbreaks simply don't stop in between. It's been very upsetting, especially reading about how "most people" with herpes can go on to live normal lives with healthy sexual relationships. The other thing that happens with me is that I spread the sores to myself if I touch myself at all (includes washing with water, which a medical student explained to me was better for my lady parts than using even a mild soap). I'd love some insight on what might cause this and any tips on coping! I mostly try to avoid thinking about sex, which I know is not the healthiest way to cope.

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I feel you Paraclete. Two years in I finally see improvement. You don't say how old you are but hormones can play a big role in outbreaks. Also, in my own case I had a tendency to attribute any thing off to an outbreak when in fact there was another issue going on such as a UTI once and typical changes associated with late perimenopause. What helped reduce but not stop the outbreaks was quitting coffee and reducing nuts. That is me, though. Everyone has different triggers. I hope this helps. Hang in there!

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I’m sorry you’re struggling. I also had increasingly intense outbreaks for a few months. I found reducing my caffeine intake and stopping my daily oatmeal really helped reduce the symptoms. I also had to really try to not stress as I found stress was a contributing factor to my outbreaks. Hang in there :)

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