Thank you for clarifying. However, the very treatments that helped you with your non-ME/CFS also have the potential to help those of us with ME/CFS, so I fear that in separating your case from all of ours, you unfortunately put people off from what might be useful treatment options
I apologize for the long delay in my reply! I definitely do not mean to put anyone off from the treatments that helped me and that would never be my intention. I try to answer every question that I am ever asked about my treatments, both on the public board and via PM. I just always clarify that in the end, ME/CFS did not turn out to be my diagnosis b/c I feel this is helpful information and I do not want to confuse anyone or mislead anyone. I had severe progressive muscle weakness that affected my ability to breathe and to walk but I did not have PEM.
I don't understand though - how can there be ME/CFS once we have enough information? Unless it is literally the IDO mutation trap, in which case it would still probably be renamed to IDO syndrome or something..
That's a very good point.. I've been in and out of the IDI trap and it didn't cure me, though it likely helped my fatigue a bit.
What does this mean (above) re: IDO Syndrome or IDI trap?
ME/CFS is a useful label for when we don't understand what is happening, and it captures the collection of symptoms that emerge from whatever overwhelming issues our bodies have. But as soon as we figure out the core issue(s), then we will rename each one and that subset of people will fall way into their own disorder.
Do you mean that ME/CFS is not a distinct diagnosis in and of itself? I am not sure if I understand. Are you saying that everyone with an ME/CFS diagnosis was misdiagnosed like I was? Or is that not what you meant?
I think you are on to something, but then we have the problem of everyone advocating for their own set of issues rather than all of us together fighting ME/CFS... so there might be some resistance to that notion 😉
I don't think everyone is fighting for their own set of issues but that there are many people (like myself) who were initially misdiagnosed and never had ME/CFS vs. something else like Lambert Eaton Syndrome, or Autoimmune Encephalitis (or literally any number of other diagnoses). I think my experience is helpful b/c if people can be properly diagnosed, it will help not only the individual person but it will also help with screening people for ME/CFS research studies.
Apologies again @Deebeewaldo
Likewise, I apologize as well and if you are still around @Deebeewaldo and have more questions re: high dose IVIG, please let us know!