Ducky, I do feel like a skunk at a picnic!
I am glad I consulted with Dr. Loughran, MD and joined his national registry.
Here were my take aways:
* They have 600 patients in the national registry
* Most patients see him to get the correct diagnosis.
* Still a chronic illness
* They know that the Killer T cells never rest
* That there is inflammation caused by the emitting of a poison in this process, which may explain why many LGLL patients also have RA. ( this piece was very bio-chem all I heard was "poison" " inflammation" )
* Don't know the cause, but operating theory is it could be a virus, but not sure which.
* They consider any neutrophil count over 500 as acceptable.
* Risk of death is primarily due to infection.
That since my neutrophil counts are in the 700-900 range, that I should continue on Cyclosporine for the duration. If I discontinue I could get an infection.
And he has consulted with my oncologist in Seattle numerous times about my case, so I felt happy that I have been getting good counsel.
After three years of going through the all the different treatment protocols, ( with the exception of Campath) I am now at the "accept and adapt" phase.
I think I will add baby aspirin to address the inflammation and will ask my Naturopath her ideas- I've been taking the usual vitamins, D3, fish oil, garlic, curcumin, something called "Forest Immunity" (cordyceps mushrooms plus others) We have not moved the needle on the Neutrophil count but at least I feel healthy ( and tired)