What you are describing is common with Lyme patients. Whether due to the illness itself or allergy, exhaustion, nutrition, dehydration- related, it is common. During more difficult times they are more pronounced. If you keep a daily journal, you can sometimes pick up on what may facilitate going from a lighter to darker circle.
http://www.lymepa.org/Corson_2004_0424_Slides_Handouts.pdf - page 2
http://www.theig.net/yorkpalyme/pdf_files/TickBorneDisBasics.pdf - page 10
http://www.wildernetwork.org/LDpediatricfund.html - Dr.J, top LymePediatrician
Heth's are more prevelant when she is in more pain for longer durations, lack of sleep, exhausted and under siege. This seems to be the norm.
I am sorry that your daughter is suffering so. I know it grieves your heart and that you are doing everything possible to help her body to fight and heal. It is great news to hear that she is taking in 1300-1500 calories each day.
Gracie's Mom is our resident expert w/gastro paresis.
Our children are precious gifts. You are her earthly hero.