My visit to Dr Susan Levine NYC

[Daffodil]

@joanne218 ..hi Joanne. i think you have to drink plenty of water with valtrex. if you get a chance, could you please ask Dr. Levine if she still thinks only 10 -15% improvement is possible? She told me this several years ago. Also, does she have any ideas as to what is causing the illness? Any theories she favors?

Also wondering if she sends away for any Lyme testing for patients...

Thanks a lot
Daffodil

 

[Mackee]

Please let us know how you do with the brand name. My doc suggested that I start by cutting the tablets as I am also sensitive to meds. I wasn't taking the Mylan generic but the Aurobindo one. They are supposed to be okay, but each of us has our own set of reactions to fillers.

Good luck with this!

Thank-you! I was instructed by the specialist last week to take 300 mg/Zantac, 2x/day (before a meal) eat a full meal, and then take the new lower dose of (brand name) Valtrex. This is done to help minimize side effects, I was told... What's interesting is that honestly, I'm normally not very sensitive to meds in general. I have always seemed to tolerate the majority of prescriptions really well on the whole (especially for how many I've tried within the past decade +), I AM very sensitive to the fillers as I said before, but still... the reaction I had to the Valtrex seemed off
for me.
Specialist said he has no preference for Valtrex over Famvir.
I originally thought Valtrex would have less side effects than Famvir, but have since read that Famvir is often a more gentle choice?

 

[SOC]

I originally thought Valtrex would have less side effects than Famvir, but have since read that Famvir is often a more gentle choice?

My ME/CFS specialist tries Famvir first in most cases because it appears to be better tolerated. However, she also said that Valtrex works somewhat better for EBV so if you've taken it before and tolerated it or if you don't improve on Famvir, she uses Valtrex.

If Valtrex is giving you trouble, I'd suggest trying Famvir instead. A lot of PWME have used it successfully for EBV.

You might also consider trying a different Valtrex generic. People seem to be reporting more trouble with the brands that are blue... I don't know why. Maybe they are made by the same, slightly different, formula, or maybe it's the dye. Who knows? Another ME/CFS specialist I saw, who has been treating ME with antivirals for a very long time, said that the Mylan and one other (I forget which, maybe TEVA; it wasn't blue) seem to work better for his patients than other generic brands. As far as I know, there's no research behind these opinions, just clinical experience.

 

[RugbyGoat]

Thanks. I think I'll take the Valtrex for a month then start back on the LDN so I know how the valtrex is effecting me.

When I took Valtrex, I took 1.5g 4x a day (yes, that is 6g a day) and I did not have any ill effects from it. The other poster was correct about drinking water, especially when taking that high of a dose. I did not begin to feel any positive effects until after 4 months of taking it. One of the side effects of taking higher doses is a high MCV value in your blood tests.