Parenteral nutrition and severe MCAD

[judyinthesky]

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.

 

[linusbert]

i know very little recarding that topic.
i suppose you already did try all kinds of H1 , H2 blockers? desloratadin, cetiricine, ketotifen?
the brain runs on H3. so i guess h3 histamin antagonists would be required. i dont know any, maybe this gives a few ideas https://en.wikipedia.org/wiki/H3_receptor_antagonist
i do not even know if h3 antagonists are / and should be used for mcas.
did you try vitamin C infusions?

 

[judyinthesky]

I don't tolerate much vitamin C but a little

I should have said I've tried all available mast cell stabilisers and ended up on Ketotifen. Don't know if it is doing something.
Also on Zyrtec but atarax too stimulating atm while sedating, hard to explain.

Have good ME specialist on mast cells.
I don't know about available H2

But I need to take lots of Benzos anyways to even bear the effects
Please no pill shaming or benzo discussion I would otherwise starve to death

 

[linusbert]

I don't tolerate much vitamin C but a little

vitamin C always makes my symptoms worse , i dont understand why. probably some lowkey allergy or liberation.
i've read that old school vitamin C produced in the linus torvalds times was made differently and was much more tolerable. i am looking for that kind of vitamin C , but never found it. maybe thats what we tolerate.
though vitamin C is massively required for anti histamin reasons. as is copper and b6 and magnesium.
maybe someone knows if there is one vendor which still produces VC the old way.

Have good ME specialist on mast cells.
I don't know about available H2

thats great.
ask him about H3 rezeptor antagonists if this would help.

Please no pill shaming or benzo discussion I would otherwise starve to death

i would never, we all got to do what we do to get through the day.
i need to take lots of bare sugar to come through. even with diabetes. so everyone got his poison.

 

[judyinthesky]

Are there any experiences with H3 drugs and which ones by people with ME?
I suspect my doctor would need some guidance.

Also I read they're stimulating and everything stimulating is very bad for me usually.