@Jonathan Edwards I feel I need to respond since I am the one who started this thread in order to broaden my understanding of immune modulators. It is a term that I hear frequently but felt silly to admit that I didn't understand it (but am now very glad that I asked.)
What frustrates me is that when I first came to PR, there was a lot of hope and excitement about different treatments and it seemed like an open and safe place to discuss them with others who had actually suffered from the same illness as me AND had actually tried the treatment AND in most cases had tried the treatment with the consent of their treating doctor.
I find in many threads that I ask a question (like I did in Leo Kittens thread) re: blood volume re: how a virus or pathogen can affect the autonomic nervous system of the brain. This idea is commonly accepted by the CFS specialists that I see and is something I am living with every day.
You immediately jumped in that viruses or pathogens do not cause autonomic dysfunction and I was stunned. When I tried to question this, you implied it was fantasy or folly on behalf of those doctors and used the word "imaginative" re: those doctors as if it were a bad thing.
I am confused why you are so quick to discount meds or research theories that may help us in the long run and each time you do, it takes away a little bit of my hope.
I do not mean any disrespect in saying this but I understand where Heapsreal and Minkeygirl are coming from. When you are this ill, you are willing to try things that have not been proven in a double blind study. I am happily on my fourth month of Famvir and it may or may not work for me but I will never regret trying it.
I am a cautious person and do not blindly try a med b/c someone told me to on a forum but I want to be able to discuss these ideas freely. I debated posting this but it was really bothering me.