26 Jan 2011, NYC in the dead of Winter
So after 3 months of Valcyte I would say that I am essentially 'cured', with many caveats. After dropping the Valcyte to the lower dose 900mg, my EBV came back. So now I am back on the 1800mg and for as long as I can see it at least for a few months, about 3. I will on 1800mg of Valcyte for 3 months.
I am not sure whether to be happy or sad. Even in the winter, at this dose of Valcyte, I am able to run around and get things done. The cold does not affect me as badly as it once did. In fact I cannot remember when it was that I felt like this, healthy and full of energy.
All my other symptons of cfs are slowly fading : IBS, sleep disorder, anxiety disorder, energy, ... I can feel them drain away from me. The supplements I need to take are less and less.
But ... and a big 'but' coming ...
At this Valcyte dose and the length I have to be on, Valcyte's reputed carcinogen warnings over and over again (black box warning), the cost of the drug, I see no cure in sight but a list of other things to worry about.
I am already functioning at about 75% after just being on Valcyte for 3 weeks. And for the first time in so long, I can actually see myself, in a few months time, actually recovering from this whole ordeal. To even think of it as an ordeal is amazing actually !
I am keeping several other regimes going. I like the methylation/folate therapy and am supplementing with that. I am also taking Shark Liver Oil at high doses and that could be the only thing that is keeping Valcyte's main side effect at bay. If the SLO can help my body get through it, I should be fine.
At this dosage, I may give myself 5 months max, even my doctor was commenting that he is not happy with the dosage. If I come off it and the EBV comes back, it will not be the end of my journey with cfs afterall and I will have to start looking into other treatments again but I am already looking ahead. By then my doctor says that he maybe willing to consider Vistide and or interferon. In some ways I am lucky bcos my doc is actually a virologist that specialises in HIV. He felt sorry for me and wanted to help when I ran into him at a clinic by chance and since then, I have clung on to him like a champion parasite.
But I have gotten these few months of my life back. For whatever it is worth it is a great respite.
undcvr-Jasper
So after 3 months of Valcyte I would say that I am essentially 'cured', with many caveats. After dropping the Valcyte to the lower dose 900mg, my EBV came back. So now I am back on the 1800mg and for as long as I can see it at least for a few months, about 3. I will on 1800mg of Valcyte for 3 months.
I am not sure whether to be happy or sad. Even in the winter, at this dose of Valcyte, I am able to run around and get things done. The cold does not affect me as badly as it once did. In fact I cannot remember when it was that I felt like this, healthy and full of energy.
All my other symptons of cfs are slowly fading : IBS, sleep disorder, anxiety disorder, energy, ... I can feel them drain away from me. The supplements I need to take are less and less.
But ... and a big 'but' coming ...
At this Valcyte dose and the length I have to be on, Valcyte's reputed carcinogen warnings over and over again (black box warning), the cost of the drug, I see no cure in sight but a list of other things to worry about.
I am already functioning at about 75% after just being on Valcyte for 3 weeks. And for the first time in so long, I can actually see myself, in a few months time, actually recovering from this whole ordeal. To even think of it as an ordeal is amazing actually !
I am keeping several other regimes going. I like the methylation/folate therapy and am supplementing with that. I am also taking Shark Liver Oil at high doses and that could be the only thing that is keeping Valcyte's main side effect at bay. If the SLO can help my body get through it, I should be fine.
At this dosage, I may give myself 5 months max, even my doctor was commenting that he is not happy with the dosage. If I come off it and the EBV comes back, it will not be the end of my journey with cfs afterall and I will have to start looking into other treatments again but I am already looking ahead. By then my doctor says that he maybe willing to consider Vistide and or interferon. In some ways I am lucky bcos my doc is actually a virologist that specialises in HIV. He felt sorry for me and wanted to help when I ran into him at a clinic by chance and since then, I have clung on to him like a champion parasite.
But I have gotten these few months of my life back. For whatever it is worth it is a great respite.
undcvr-Jasper