I've been working with Dr. Dantini for about six months. I love him and his nurse, Jo. They couldn't be more supportive. But I've been taking the Valtrex 3000 mg per day at full dose for nearly five months. I definitely saw improvement. But now, I'm in a big flare up and they insist that I will need to take the meds for probably a year. They say if I get off it now, I'll revert to where I was before. My gut feeling is that it's time to get off the drug, but I'm scared that they are right. My flare up isn't quite as severe as it used to be. Still, I'm feeling concerned about taking this level of anti-viral for this long. I can't find any recent posts by people who have gone through this protocol.
I guess I'm wondering what would be the worst that would happen if I got off it to see how I do?
And I wonder if there is anyone who has gone through it and stayed the course.
Thanks,
Susan
Hi Susan! Welcome...
I did go through Dr Lerner's protocol for about 12-18 months. Over that time I took Valtrex 4g/day, Valcyte 1800 mg/day, and also did cidofovir IV every two weeks for about 20 infusions.
After all that, I came to the conclusion that the antivirals were really working more as immunomodulators rather than actually reducing my viral load. It's just a theory because it's hard to prove with the antibody testing that's currently used. But it would take on the magnitude of years to eradicate these type of infections with antivirals because they don't kill anything, they just stop replication.
So my two cents (and I'm not a doctor!), is that as long as you do not have an acute infection (high IgM) and you are being diagnosed with a chronic infection on the basis of highly elevated IgG antibody levels, I think it's fine to take a break. If you have an acute infection, I would stick with it.
As far as going back to baseline, well, yes, that might well happen once you remove drugs that are modulating your immune system. But that doesn't mean you couldn't go back on them later if you wanted.
@Who Me? is right that 5 months isn't very long on AVs and that it can take a year or more to see solid improvements. But I also believe in listening to your gut. If it makes you feel any better about staying the course for another few months, the safety profile of drugs like Valtrex is very high. I'm sure your doctor is staying on top of your liver etc just in case though with regular bloods.
Good luck!