eric_s
Senior Member
- Messages
- 1,925
- Location
- Switzerland/Spain (Valencia)
Hi
Ok, finally i can say a bit more, even though there is not soo much. On Monday, when i called, Dr. Bieger had somebody else in his office or something like that and they told me they would give me an appointment to call on Tuesday. So i said "ok" and called Tuesday. But then he was on the phone with somebody else and when that was finished and i reached him he asked wheter i could wait until Wednesday, because he was very busy. So i called again on Wednesday and then he could talk about the results, etc.
He could not really tell me a lot, but i guess that's not his fault, it's because nobody really knows enough about ME/CFS at this point.
He said most values were more or less normal, so it's hard to say something. I then asked about the low T-cell counts, for example, and he said that they are low, but because the ratios are ok, it does not look alarming. I then asked if it would make sense to do more detailed analyses of the immune system and he said he wouldn't do that, because even though chances are we might find something, the problem would be that you don't really know what to do with what you find. So his approach is to try the treatment and see if it works.
He said in ME/CFS you often see abnormal values in the immune system, but there's nothing everybody with ME/CFS has and the others don't have. That's the problem. But when i asked him, he said that he can see a difference between people with ME/CFS and healthy people there, but that there is no clear pattern.
What he found to be the most significant in my case seemed to be the Vitamin D and the signs for inflammation, COX-2 and NFkB.
I also asked about MxA, this marker for antiviral immune activation. He said that this is only positive when there's something going on with the immune system. It would not be positive just like that, if i understood him correctly.
I also asked him about HHV-6 and CMV and he said i could get tested for that in Switzerland.
And he also said that from these tests the case for an XMRV infection seems to be rather weak. Which i'm not unhappy to hear, like i said earlier. But we will see, i would not be surprised about any outcome, positive or negative, in the end.
He suggested antiviral and antiinflammatory treatment. He said that it doesn't matter so much what virus it exactly is, because the drugs are effective against different viruses. He thinks the antiviral approach is the most interesting one, because there are some studies that show it can work.
So he said i could start these drugs and then call after some weeks to discuss how it went.
I don't know yet if i want to try the medication at this point, because i think the next couple of months could bring many new turns and so maybe i will prefer to wait and see what they find out about XMRV first. If XMRV plays a role, treatment approaches might change, and so i don't know if i want to take these medications now only to change them for others later. I also want to read about these drugs first and maybe ask other doctors about them to be able to weigh pros and cons.
Ok, finally i can say a bit more, even though there is not soo much. On Monday, when i called, Dr. Bieger had somebody else in his office or something like that and they told me they would give me an appointment to call on Tuesday. So i said "ok" and called Tuesday. But then he was on the phone with somebody else and when that was finished and i reached him he asked wheter i could wait until Wednesday, because he was very busy. So i called again on Wednesday and then he could talk about the results, etc.
He could not really tell me a lot, but i guess that's not his fault, it's because nobody really knows enough about ME/CFS at this point.
He said most values were more or less normal, so it's hard to say something. I then asked about the low T-cell counts, for example, and he said that they are low, but because the ratios are ok, it does not look alarming. I then asked if it would make sense to do more detailed analyses of the immune system and he said he wouldn't do that, because even though chances are we might find something, the problem would be that you don't really know what to do with what you find. So his approach is to try the treatment and see if it works.
He said in ME/CFS you often see abnormal values in the immune system, but there's nothing everybody with ME/CFS has and the others don't have. That's the problem. But when i asked him, he said that he can see a difference between people with ME/CFS and healthy people there, but that there is no clear pattern.
What he found to be the most significant in my case seemed to be the Vitamin D and the signs for inflammation, COX-2 and NFkB.
I also asked about MxA, this marker for antiviral immune activation. He said that this is only positive when there's something going on with the immune system. It would not be positive just like that, if i understood him correctly.
I also asked him about HHV-6 and CMV and he said i could get tested for that in Switzerland.
And he also said that from these tests the case for an XMRV infection seems to be rather weak. Which i'm not unhappy to hear, like i said earlier. But we will see, i would not be surprised about any outcome, positive or negative, in the end.
He suggested antiviral and antiinflammatory treatment. He said that it doesn't matter so much what virus it exactly is, because the drugs are effective against different viruses. He thinks the antiviral approach is the most interesting one, because there are some studies that show it can work.
So he said i could start these drugs and then call after some weeks to discuss how it went.
I don't know yet if i want to try the medication at this point, because i think the next couple of months could bring many new turns and so maybe i will prefer to wait and see what they find out about XMRV first. If XMRV plays a role, treatment approaches might change, and so i don't know if i want to take these medications now only to change them for others later. I also want to read about these drugs first and maybe ask other doctors about them to be able to weigh pros and cons.
