Is Brivudine an option for suspected EBV-induced CFS?

[Wonkmonk]

For those interested in this drug: I made another try with a much lower dose of Brivudine (1/4 tablet a day, i.e. 31mg). It made me a lot worse again in just two days (though that seems to be quickly reversible).

It reminded me of @Gingergrrl who reported she couldn't even tolerate tiny amounts of Valcyte. I think for me it is the same with Brivudine that even small amounts have a profoundly worsening effect.

I might be able to tolerate very low doses (1/16 tablet), but then the question is what positive effect such a small dose could possibly have.

So that reinforces my belief that Brivudine is not the right drug, at least for my kind of CFS (currently hypothesized to be caused by HSV-1).

I will try a lower dose of Valacyclovir next and hope I can avoid the kidney problems with the lower dose.

 

[Gingergrrl]

It reminded me of @Gingergrrl who reported she couldn't even tolerate tiny amounts of Valcyte. I think for me it is the same with Brivudine that even small amounts have a profoundly worsening effect.

This is correct and in 2014 (and very early 2015), I was trying Valcyte as low as 1/64th of a pill but still could not tolerate it. It initially gave me vertigo but then it gave me severe agitation and akathisia. The akathisia was unbearable and I realized that Valcyte was just not an option for me at any dose. It was originally very disappointing but then we realized that I needed treatments for autoimmunity (and anti-virals never helped me including Famvir). Although I have no regrets that I tried them.

I will try a lower dose of Valacyclovir next and hope I can avoid the kidney problems with the lower dose.

Best wishes with this and keep us posted.

Edit: I clicked on the YouTube link in your signature re: the results of your physical exams and it takes me to a link of the "Lego Movie"! Am I doing something wrong or do you have the wrong link?

 

[Wonkmonk]

Edit: I clicked on the YouTube link in your signature re: the results of your physical exams and it takes me to a link of the "Lego Movie"! Am I doing something wrong or do you have the wrong link?

Haha, no that's exactly what the results were. My doctors say "Everything is awesome." I'm totally healthy.

 

[Gingergrrl]

Haha, no that's exactly what the results were. My doctors say "Everything is awesome." I'm totally healthy.

OMG, that is so clever and cute! Sorry I did not get it the first time! I love it.

 

[Wonkmonk]

 

[JohnK02]

Hi, may I ask did you try valcyte? How are you doing now?

 

[Learner1]

Valcyte has been a lifesaver for me and brought me e back to health as long as I stay on it when I have outbreaks.

 

[Wonkmonk]

Hi, may I ask did you try valcyte? How are you doing now?

I did not, I feared the side effects and I no longer believe my illness is due to a herpes virus.

I am now doing a dietary approach which of all treatments for the first times appears to help.

 

[JohnK02]

I'm so glad you are doing better. May I ask which type of diet are you doing?

 

[Wonkmonk]

I'm so glad you are doing better. May I ask which type of diet are you doing?

It's very strange. I detailed it in this thread.

https://forums.phoenixrising.me/thr...ietary-adjustments.86825/page-11#post-2435400

But it works for some weird reason. I improved massively, though unfortunately it's so far not the case that I am on a continuously improving trajectory. It's more like I am reaching higher and higher plateaus.

 

[Forummember9922]

I would totally try Brivudine because I read a 'cure' testimonial of a 7 day course. I think this would be very hard to get in USA though.