12:00 noon - Josh Cutlar & Allison Caruana handed the scientific Lyme document to the IDSA and asked them to read it. "The current state of Lyme disease treatment is not right. The guidelines are flawed, testing is outdated even among the different strains of Lyme. We just want you to acknowledge all the suffering. Change the name if you want, chronic lyme, post lyme, whatever you choose to call it! I don't care who's ego is in this.
I shouldn't have to look my son in the eye and hear him say, "Mommy will I ever know what normal is?" Allison recalled seeing tears well in the eyes of the two women representatives while she spoke with them.
"As long as your IDSA guidelines stay the same - We will not stop!"
The women said, "We hear you and we're listening." (They had never before talked with them face to face..)