judyinthesky
Senior Member
- Messages
- 373
Now this could be related to several categories but I'll put it here. May be moved to a nutrition category though.
Would be grateful to everyone for thoughts.
So, I do have a particular nasty thing with my ME that is related to my severe pancreas insufficiency.
Eating does enhance inflammation in my body and in particular my brain and it isn't food allergy. Even though I'm well treated for MCAS.
So here's the thing.
My parathyroid hormone level PTH is very low, as is my vitamin D despite taking 200% for a while and calcium. Calcium is normal.
I am very severe and can feel my brain inflammation.
There's signs for protein malnutrition in my body.
I've found articles from the area of haemodialysis patients where they describe three unusual cases of malnutrition inflammatory complex syndrome /MICS, that have exactly that: a low PTH and vitamin D with normal calcium.
I also get cramping related to exertion and have a spinal CSF leak. I had a thyroidectomy in the past with a transient hypoparathyroidism so I would know those symptoms.
To me the discovery of the low PTH is a sign, even though by other means than the inflammation seen in haemodialysis, that a cycle of malnutrition inflammation complex syndrome could be going on.
My liver values are normal apart from two levels that can also point at malnutrition.
Please no advice on more eating or liquid diet etc I am doing all that, the problem is that it isn't gastroparesis, it is literally my brain inflammation getting worse through eating so I have to stick to the lesser evil, and my suspicion is that the malnutrition is driven by inflammation. It also started to go bonkers when I was eating more in 2020 after losing weight.
Anyhow. I was wondering whether anyone knows of a malnutrition inflammation complex syndrome outside the context of haemodialysis.
The journal article describing the three cases of low PTH in the context of MICS is from 2021 so this seems kind of a newer research.
I would argue that a similar case, through lack of thyroid hormones and inflammatory markers, could be going on in my case. It would be the perfect case study to write up
In the context that I'm mentioning, they also say that it's uncertain whether nutrition or decrease of inflammatory markers would do something.
It's even described as a sort of survival mechanism.
It reminds me of a form of metabolic trap.
What do you think? Have you heard of malnutrition inflammation complex syndromes in other contexts or even in ME?
I think my case is predominantly related to that and my body cannot deal with any sort of inflammation. Had extreme worsening by immunisation as well. And the leak.
I think it's great that there's all the focus on autoimmune and post viral but I don't think that's my main issue.
But since we have found out about the low PTH, which certainly isn't there for no reason, we may have more of a proof of the hypothesis that I'm expressing just based on my feelings. It's just that my inflammation is also in my brain (I feel it, expanding etc). Thoughts?
Would be grateful to everyone for thoughts.
So, I do have a particular nasty thing with my ME that is related to my severe pancreas insufficiency.
Eating does enhance inflammation in my body and in particular my brain and it isn't food allergy. Even though I'm well treated for MCAS.
So here's the thing.
My parathyroid hormone level PTH is very low, as is my vitamin D despite taking 200% for a while and calcium. Calcium is normal.
I am very severe and can feel my brain inflammation.
There's signs for protein malnutrition in my body.
I've found articles from the area of haemodialysis patients where they describe three unusual cases of malnutrition inflammatory complex syndrome /MICS, that have exactly that: a low PTH and vitamin D with normal calcium.
I also get cramping related to exertion and have a spinal CSF leak. I had a thyroidectomy in the past with a transient hypoparathyroidism so I would know those symptoms.
To me the discovery of the low PTH is a sign, even though by other means than the inflammation seen in haemodialysis, that a cycle of malnutrition inflammation complex syndrome could be going on.
My liver values are normal apart from two levels that can also point at malnutrition.
Please no advice on more eating or liquid diet etc I am doing all that, the problem is that it isn't gastroparesis, it is literally my brain inflammation getting worse through eating so I have to stick to the lesser evil, and my suspicion is that the malnutrition is driven by inflammation. It also started to go bonkers when I was eating more in 2020 after losing weight.
Anyhow. I was wondering whether anyone knows of a malnutrition inflammation complex syndrome outside the context of haemodialysis.
The journal article describing the three cases of low PTH in the context of MICS is from 2021 so this seems kind of a newer research.
I would argue that a similar case, through lack of thyroid hormones and inflammatory markers, could be going on in my case. It would be the perfect case study to write up
In the context that I'm mentioning, they also say that it's uncertain whether nutrition or decrease of inflammatory markers would do something.
It's even described as a sort of survival mechanism.
It reminds me of a form of metabolic trap.
What do you think? Have you heard of malnutrition inflammation complex syndromes in other contexts or even in ME?
I think my case is predominantly related to that and my body cannot deal with any sort of inflammation. Had extreme worsening by immunisation as well. And the leak.
I think it's great that there's all the focus on autoimmune and post viral but I don't think that's my main issue.
But since we have found out about the low PTH, which certainly isn't there for no reason, we may have more of a proof of the hypothesis that I'm expressing just based on my feelings. It's just that my inflammation is also in my brain (I feel it, expanding etc). Thoughts?