MND-Assistance requested

(Trudy) #1

Need some advice. I have a person close to me who has MND. His speech has already been affected and I can see a loss in muscle tone. I have checked and he is not taking statins. Is there any science for the use of ketosis in MND? I also wonder about the benefits for exogenous ketones in this case? Any interventions are unlikely to be life prolonging but looking for improvements in quality of life. TIA.

(Michael - When reality fails to meet expectations, the problem is not reality.) #2


21%20PM

(Trudy) #3

Thank you, a couple of great reads. I find it hard to “ask” someone with a terminal illness to give up easy carbs and commit to fat, these readings help.

(Bacon is a many-splendoured thing) #4

A lot of what these diseases have in common is problems with glucose metabolism in the brain. Fortunately, ketones pass the blood-brain barrier (fats do not) and can serve as an alternative fuel. While a ketogenic diet is not likely to heal or reverse severe brain problems, it can possibly slow the progression of the disease.

For example, a number of Alzheimer’s disease patients with mild cognitive decline have been restored to full functioning, but once the damage has passed beyond a certain point, full healing seems not to be possible. (Of course, the brain heals very slowly to begin with, which doesn’t help.)

Sorry not to be more encouraging about this person’s chances on a ketogenic diet. But as Dr. Berry says, a ketogenic diet can’t harm the situation, and it might possibly help.

This video is more about Alzheimer’s dementia than other brain problems, but it does touch on Parkinson’s disease and muscular dystrophy. You might be interested in Amy’s answer.

(Michael - When reality fails to meet expectations, the problem is not reality.) #5

Amy Berger is a specialist in Altzheimers and keto. She has several articles about this on her website. This one addresses the issue of keto/ketone (exogenous) treatment in lieu of changing the diet instead. Why she thinks it’s generally not a good idea, chasing ketones for the sake of chasing ketones rather than improvement or slowing of progression of the disease.

In the absence of dramatic dietary and lifestyle adjustments, administering exogenous ketones is like bailing water out of a leaky boat without stopping to patch the hole – you merely manage the symptoms while the root causes continue wreaking havoc.

Keto base
(Todd Allen) #6

I have SBMA (spinal bulbar muscular atrophy) a genetic neuromuscular wasting disease. I’ve been eating keto for more than 4 years and I am doing tremendously better. Here is a good review article discussing some of the mechanisms by which ketosis is believed to help in neurodegenerative diseases. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7418707/

The Case for Keto: Primer Biochemical Activities of Ketosis
(Michael - When reality fails to meet expectations, the problem is not reality.) #7

@brownfat Thank you for the link! There is so much in this study pertinent to ketosis generally, aside from the specifics of neural degeneration.

(Bacon is a many-splendoured thing) #8

I should have mentioned in my earlier post that this is one of the cases in which exogenous ketones might well be very helpful, instead of a waste of money, especially in concert with a ketogenic diet.

(Michael - When reality fails to meet expectations, the problem is not reality.) #9

Discussion

Nutritional ketosis induced with the KD has proven effective for the metabolic management of seizures and potentially other disorders [1–26]. Here we present evidence that chronic administration of ketone supplements can induce a state of nutritional ketosis without the need for dietary carbohydrate restriction and with little or no effect on lipid biomarkers. The notion that we can produce the therapeutic effects of the KD with exogenous ketone supplementation is supported by our previous study which demonstrated that acutely administered KE supplementation delays central nervous system (CNS) oxygen toxicity seizures without the need for dietary restriction [29]. We propose that exogenous ketone supplementation could provide an alternative method of attaining the therapeutic benefits of nutritional ketosis, and as a means to further augment the therapeutic potential of the KD.

So this is what I see as the crux of the matter. If you induce high ketones (via supplementation) without reducing glucose and insulin (via diet modification) what will be the long term effects? Per the article I linked above, Berger thinks it’s a recipe for a cascade of problems. If you don’t first eliminate the major source of the problems which is over consumption of carbs and resultant over production of insulin, the underlying metabolic dysfunction is not going to reverse itself and simply adding ketones to the mix may eventually prove worse than not.

There is also an energy management issue. As discussed here: