1 year on Valcyte
Nov 3rd was my one year anniversary on Valcyte. I recently just came off it again to see what would happen, I did this by necessity really and not by choice due to insurance purposes. I felt all the symptoms that i normally associate with ebv come back again but this time they were milder. I can see how the Valcyte has helped me over the year that I was on it but it was not the cure I was hoping it would be and it would seem that I would I have to be on it long term for it to work. I am very disappointed. More disturbingly several other symptoms that I consider part of my cfs were not treated by the Valcyte and seemed to be happening even though I kept testing neg for ebv in my blood while going through it. I am beginning to think that there is something else behind my cfs even as ebv causes the tail end (more severe) of my chronic fatigue symptoms. I am still experiencing many auto immune issues while keeping the ebv at bay, most recently I experienced a relapse with a change in a weather and bizarrely the symptoms seemed to be triggered by the flu virus as Tamiflu seemed to help despite the fact that I had the flu vaccine shot.
I have self-diagnosed myself with ebv induced lupus even though my ANA is neg and my ESR is very low. I decided that this is what I have after reading how high the correlation is with pple having lupus after coming down with ebv. All my symptoms are also very very similar. But I have decided that since I am having a flare up/relapse while the ebv is neg in my blood, the cause of the lupus could be something else entirely. I am looking into Lyme and yeast/fungus even though I have nvr really tested for that or tested positive for either of that.
I am thinking of going back onto natural supplements for awhile even though they cost me a bomb. I have also decided to start taking Plaquenil for awhile to see how that works. I am taking it because it is recommended for lupus sle but now I hear that people with lyme take it too so I am confused again. So much overlap. I remember that artemisinin and thymus used to help when I was taking them.
One point to note in all this is coinfection. When a person comes down with a cold which is caused by a virus a doctor might prescribe him abx for it. This is because there is no AV for the cold virus and also becos many other opportunistic pathogens then take the opportunity to assault the body. It is possible that you would have to treat everything at the same time as you just don't know where the next attack is coming from. I think my point is to be aggressive if you can be.
Nov 3rd was my one year anniversary on Valcyte. I recently just came off it again to see what would happen, I did this by necessity really and not by choice due to insurance purposes. I felt all the symptoms that i normally associate with ebv come back again but this time they were milder. I can see how the Valcyte has helped me over the year that I was on it but it was not the cure I was hoping it would be and it would seem that I would I have to be on it long term for it to work. I am very disappointed. More disturbingly several other symptoms that I consider part of my cfs were not treated by the Valcyte and seemed to be happening even though I kept testing neg for ebv in my blood while going through it. I am beginning to think that there is something else behind my cfs even as ebv causes the tail end (more severe) of my chronic fatigue symptoms. I am still experiencing many auto immune issues while keeping the ebv at bay, most recently I experienced a relapse with a change in a weather and bizarrely the symptoms seemed to be triggered by the flu virus as Tamiflu seemed to help despite the fact that I had the flu vaccine shot.
I have self-diagnosed myself with ebv induced lupus even though my ANA is neg and my ESR is very low. I decided that this is what I have after reading how high the correlation is with pple having lupus after coming down with ebv. All my symptoms are also very very similar. But I have decided that since I am having a flare up/relapse while the ebv is neg in my blood, the cause of the lupus could be something else entirely. I am looking into Lyme and yeast/fungus even though I have nvr really tested for that or tested positive for either of that.
I am thinking of going back onto natural supplements for awhile even though they cost me a bomb. I have also decided to start taking Plaquenil for awhile to see how that works. I am taking it because it is recommended for lupus sle but now I hear that people with lyme take it too so I am confused again. So much overlap. I remember that artemisinin and thymus used to help when I was taking them.
One point to note in all this is coinfection. When a person comes down with a cold which is caused by a virus a doctor might prescribe him abx for it. This is because there is no AV for the cold virus and also becos many other opportunistic pathogens then take the opportunity to assault the body. It is possible that you would have to treat everything at the same time as you just don't know where the next attack is coming from. I think my point is to be aggressive if you can be.