I’m a 29f and I’ve been in and out of urgent care, the ER, seen specialists over the course of 10+ years and nobody has been able to tell me anything outside of IBS. I assumed I had parasites, even thought I saw them sometimes, but every test I took came out negative, every treatment was ineffective.
Finally, last week, my results came back. I tested positive for C-diff and chronic Epstein-Barr Virus. These are both pretty serious conditions and I’ve had them for over a decade now but the doctor who found the issues is confident he’ll be able to resolve them without drugs.
Please send healing vibes, prayer, and any tips on overcoming these diagnoses. Also, if you’re going to trust a doctor to help you, make sure they trust YOU enough to listen to your experiences and take the extra steps necessary to get to the root of the problem! It took me ten years to find the right one and get answers. Knowing what the problem is is half the battle.
Find a doctor that will prescribe valacyclovir. EB is a herpes virus and valacyclovir is a herpes treatment. A study I read indicated that treatment for 11 to 12 years is needed to reduce the virus to undetectable levels. My son has chronic EB and it about ruined his life. He's been on the treatment for nearly 2 years now and almost back to his old self.
EB seems to be one of those weird diseases that most people are unaffected by but a few are highly susceptible to. It seems to cause a cascade of problems including heart and GI issues. Get the EB under control first, the other problems start to become alleviated.
It may be necessary to look into veterinary treatments for herpes viruses. Just a bit of advice... focus on treating this as a herpes infection. That is more clearly understood compared to the nebulous symptoms associated with EB.