judyinthesky
Senior Member
- Messages
- 381
Does anyone have experience with parenteral nutrition, very severe ME and very severe MCAS?
I'm reacting to all food and liquids at this point. My brain inflammation defines how much I can put through.
It got extremely worse with elemental nutrition (by the oral route).
Benzos are the only thing that help me to withstand the brain inflammation torture I get from eating. Upping them doesn't get me far with the amount of food though.
My reactions are more to artificial than natural also. Hence I'm worried that I will react to total parenteral nutrition as well.
Has anyone experience or thoughts or ideas?
Problematic is also that it's very hard for me to be in a hospital as my brain inflammation state is very severe, hard to stand people in the room etc.
Appreciate your ideas. I know it's a tough one.
This is not new for me but the severity is. I was already able to eat less and less throughout the years.
It's not only mast cells.
It's like others are intolerant to light and have to be in darkness, my gut brain axis cannot have any kind of stimulation.
I'm reacting to all food and liquids at this point. My brain inflammation defines how much I can put through.
It got extremely worse with elemental nutrition (by the oral route).
Benzos are the only thing that help me to withstand the brain inflammation torture I get from eating. Upping them doesn't get me far with the amount of food though.
My reactions are more to artificial than natural also. Hence I'm worried that I will react to total parenteral nutrition as well.
Has anyone experience or thoughts or ideas?
Problematic is also that it's very hard for me to be in a hospital as my brain inflammation state is very severe, hard to stand people in the room etc.
Appreciate your ideas. I know it's a tough one.
This is not new for me but the severity is. I was already able to eat less and less throughout the years.
It's not only mast cells.
It's like others are intolerant to light and have to be in darkness, my gut brain axis cannot have any kind of stimulation.
Last edited: