CajunG, you really are so much help to others. And I have no doubt that this is definitely
not the end of your journey. I don't remember if you used to (lymebrain!), but you don't have a signature w/ your story. Maybe you should -- so we can always keep things in mind as we learn more.
I have a lot of thoughts on the crime that these diseases are so little understood by the medical profession. It is an absolute travesty and tragedy that we do not have more accurate and generally accepted tests and treatment for these diseases, as many people as they affect.
As we learn more, we learn that there are certain tests more reliable than others, as long as they are sensitive enough and go by modern guidelines.
These diseases are really not so mysterious. They are infections w/ bacteria and parasites. Confoundit! They are only described as 'mysterious' because so many prestigious Drs and researchers refuse to open their eyes and minds and look at them! And because there's not enough funding for the Drs and researchers who are trying to study them.
It is a crying shame. It's a disgrace to 'modern' American medicine. It is a disgrace that people like RD and so many others suffer needlessly, not only the pains and infirmities of this disease, but the humiliation and neglect on the part of those who are supposed to be medical professionals -- medical professionals who refuse, downright refuse to study a disease that has stricken so many people and from which so many people suffer, suffer, suffer.
And the fact that our friends, families and co-workers get tired of our complaining and talking about this disease, and begin to view us as hypochondriacs and/or psychiatric cases is directly caused by the neglect and crimes named above.
Don't you believe for even a second, that if this disease were not so controversial and was instead well researched by the medical professionals who took a vow to save us, not only would we be receiving the treatments we need, but our friends and families would be more understanding of how we feel and how we suffer.
That is the end of my Sunday Sermon.....
CG, I've read your posts on days when you've felt deathly ill, yet you still come here. It is awesome that you keep coming, yet it really is disgraceful that you are still suffering as you are and that modern, standard treatments have not been discovered and applied to all who are in need.
As for me, this will be my attitude so far: As far as I can remember, I have always responded well to abx. I'm going in w/ the attitude that my abx will take care of this infection. The babs may require a little more trial. But my infection is relatively 'new' compared to so many here.
The best I hope to do is to be able to help others learn more about these diseases (asking questions!) and to find any answers on my own that can possibly benefit others.
Sincerely, CG, thank you for all that you do.
We're all in this together......
Afterthought: by the time I made it to an LLMD there were some things that felt a little better, and some that were worse. The recurrent fevers and body aches were coming further and farther between. The muscle aches and inflammation were improved. I am wondering if the stuff that seems worse could be due to the viruses I came up with, or maybe the babs: Worsening fatigue, all cognitive stuff, depression, anxiety in my muscles, and fluxuating worsening back pain. Maybe I have been fighting the lyme itself, hence a better CD57?