I think it should be clear and obvious to anyone who is following you on this board that you are trying to help other members wherever possible and that you are not seeking to disparage any other individual or group of patients. To be honest, I think that is an absurd accusation that I can only imagine must have been some kind of misunderstanding on @Joh
Thank you @Wonkmonk
and I am glad that you can see my true intention with sharing so much info is to help others down the line. I am hoping once I am long gone that others will read about my experiences on PR and why I made certain decisions and it will help them. There is no scenario in which I would disparage another group of patients, with any illness. It is just not me.
I know there are haters out there but I rarely encounter them on PR and this was the third time (in four years) that someone has attacked me out of the blue where I did not see it coming. It can really affect me, and it increased my tachycardia even when I woke up, but I am trying to move past it.
I just wanted to add that the group I reference (who have my same calcium autoantibody) are a very loving group of people and to see the word "smug" applied to them blew my mind. At one point I had posted a little survey in that group when I was trying to learn more about Ritux and there were people in other countries posting replies to me in other languages and other people were translating and it was a beautiful experience (similar to what I normally encounter here on PR).
Some of them have flown from Europe and South America to go to Mayo Clinic thinking they would be helped but were treated like shit and told the autoantibody was meaningless (unless it correlated with LEMS or cancer and for many of us, it does not). It is a small group b/c the autoantibody is rare and I have seen doctors who have never even heard of it (and they went to med school)!
, please do not stop posting on this subject. You have been generous with your time and have gone to great effort to provide detailed information about your situation, which is quite helpful in putting the treatments you have chosen in context. Not every treatment will be right for all of us, so it is incredibly important to understand why people are doing what they're doing, the context, and what the results are.
Thank you @Learner1
and this is why I have been so open re: the confusion surrounding my diagnosis so people will understand WHY I have made the decisions that I have made and know the full context. There are times that I have prayed to have a clear-cut diagnosis without any confusion but I do not know if this will ever happen. Thank you for understanding that.
Yes i'm seeing an infectious disease dr in a few weeks, though the problem is that since they don't know me/cfs they can't fathom these kind of symptoms being from an infection
I think that is a great idea @Hubris
and I was wondering, is it possible to just say that you want to be tested for viral PCR's without telling the doctor you were given an ME/CFS diagnosis? The PCR results should (hopefully!) be accurate and give you the info that you need to move forward. I often just report my symptoms to doctors who are unable to comprehend the complexities of my case.