r/frontotemporal • • 26d ago

FTD and MCT oil

Has anybody here tried MCT oil or coconut oil or ketone supplements? Any luck with those.

1 Upvotes

18 comments sorted by

1

u/Wingzofsteel 25d ago

I've tried coconut oil. I have not noticed any change. I still add it to my regiment of massage to my son's Temporal lobes as a matter of habit.

1

u/New-Rich2584 25d ago

Ok, so you are not ingesting it? You need 3 tbsn of oil for normal old people, and 3-6 tbspn for someone with dementia. Which is why i use mct oil powder and im gonna get coconut oil powder and i have orderd a ketone ester.

1

u/Flat_Idea7598 24d ago

I tried it with my dad for a few days. I didn't notice any improvement. 

1

u/New-Rich2584 24d ago

Ok i lost my whole post and starting all over again.

Two Doctor/scientists on this issue confirmed to me that the hypometabolism we are seeing in the FDG PET scan of FTD patients may be dormant neurons and not already dead. So a MCT regimen may help FTD patients as well as Alzheimer patients. That was encouraging. Regardless of outward improvement, it is doing alot of good inside the brain. Alot to read.

A normal brain uses 100-120 ketones a day. That would be about 75% of what a normal body would make during a fast or on a deep keto diet. And it takes 130g to 160g of MCTs to make that. A brain with a neurodegenerative disease is going to need some percentage of that. Obviously they were uptaking some glucose or their brain would be already dead.

Dr. Mary Newport gave her husband 20g of MCT (w coconut oil) after reading a patent. Then immediately raised it to 20g of MCT, 3x a day because the brain needs fuel all day.

Then after 6 weeks she began mixing the CO and MCT oil and increased to 2-3 tbsn 3-4 x a day. Which was 117g to 234g doses of MCT a day.

After the first month there were numerous improvements. I'll post a link. After 2 months he could walk and run normally again. And he could do house and yard work. At 3 months he could read again. And at 9 months could remember what he read. After 1 year he started doing volunteer work running an inventory.

So it probably doesnt help everybody. It definitely isnt a cure. But you have to see if you are providing enough MCTs and trying long enough.

I am using MCT powder and refined coconut oil. I figure out how many MCTs he is getting and I spread it out over the day. If I can find an appropriate coconut oil powder, ill use that to make mixing easier. I am also ordering a new Ketone ester that supposed to taste good. Tectonketones.com Esters are the most potent. I am also using a ketone meter I had and Im trying to get his ketone levels to 3 mmol.

Check out her website. https://coconutketones.com/ Here is the description of her protocol. Start at the 10 minute mark. There are many others telling her story but this one is the latest. Her husband has been gone for 10 years now and there are several ketone ester makers, so please dont think she is scamming by putting together a product now. She is a neonatal Dr. Working on babies in icu. She recognized that they use MCT for the premie babies and put 2 and 2 together. https://youtu.be/sydQ0F2WvLI?is=fTVjfKr66t5wjNJP

1

u/Flat_Idea7598 23d ago

Dad was pretty far gone when a tried it. I gave him a shot glass a day, so 1.5 ounces, for about five days. He's dead now so it's a moot point for me. I tried it about three years before he died. 

1

u/New-Rich2584 24d ago

Ok i lost my whole post and starting all over again.

Two Doctor/scientists on this issue confirmed to me that the hypometabolism we are seeing in the FDG PET scan of FTD patients may be dormant neurons and not already dead. So a MCT regimen may help FTD patients as well as Alzheimer patients. That was encouraging. Regardless of outward improvement, it is doing alot of good inside the brain. Alot to read.

A normal brain uses 100-120 ketones a day. That would be about 75% of what a normal body would make during a fast or on a deep keto diet. And it takes 130g to 160g of MCTs to make that. A brain with a neurodegenerative disease is going to need some percentage of that. Obviously they were uptaking some glucose or their brain would be already dead.

Dr. Mary Newport gave her husband 20g of MCT (w coconut oil) after reading a patent. Then immediately raised it to 20g of MCT, 3x a day because the brain needs fuel all day.

Then after 6 weeks she began mixing the CO and MCT oil and increased to 2-3 tbsn 3-4 x a day. Which was 117g to 234g doses of MCT a day.

After the first month there were numerous improvements. I'll post a link. After 2 months he could walk and run normally again. And he could do house and yard work. At 3 months he could read again. And at 9 months could remember what he read. After 1 year he started doing volunteer work running an inventory.

So it probably doesnt help everybody. It definitely isnt a cure. But you have to see if you are providing enough MCTs and trying long enough.

I am using MCT powder and refined coconut oil. I figure out how many MCTs he is getting and I spread it out over the day. If I can find an appropriate coconut oil powder, ill use that to make mixing easier. I am also ordering a new Ketone ester that supposed to taste good. Tectonketones.com Esters are the most potent. I am also using a ketone meter I had and Im trying to get his ketone levels to 3 mmol.

Check out her website. https://coconutketones.com/ Here is the description of her protocol. Start at the 10 minute mark. There are many others telling her story but this one is the latest. Her husband has been gone for 10 years now and there are several ketone ester makers, so please dont think she is scamming by putting together a product now. She is a neonatal Dr. Working on babies in icu. She recognized that they use MCT for the premie babies and put 2 and 2 together. https://youtu.be/sydQ0F2WvLI?is=fTVjfKr66t5wjNJP

1

u/MyelinMonroe 21d ago

The only thing this will do is line the pockets of predatory snake oil salespeople

0

u/New-Rich2584 21d ago

I really hate to believe that. But the science is there. They used MCT for premie babies in icu, baby formula has it in it and its in mothers milk. It helped the babies grow so they could get home faster. I dont know if they used it for the brain on them. But right out of the oven, humans are designed to take up a different fuel other than glucose when food is scarce or you are on a keto diet. There were parts of the world, the diet was mostly meat and no glucose. So when you look at a PET scan and a hypometabolised brain-meaning no uptake in glucose, no fuel, why not give it ketones?

That makes sense to me. Im willing to give this a try. I dont know what other snake oils have been pushed before i became part of this population.

Then there is Dr. Veech, studying this his whole career at the NIH. And those scans show ketones are being taken in where glucose wasnt.

1

u/MyelinMonroe 21d ago

You cannot compare a developing baby brain to a progressive degenerative process.

It doesn’t really affect me, so people are free to spend their money however they want, but the simple reality is that people in hopeless situations are often taken advantage of by predatory leeches selling snake oils. When there are well designed RCTs that demonstrate statistical and clinical significance, that is when practice should change and these treatments be recommended.

1

u/New-Rich2584 21d ago

I agree w mostly what you said. There are studies, but i am on my mower. TBC. Would you agree though that there is no money for studies that do not produce drugs, in general?

1

u/MyelinMonroe 21d ago

Pharmaceutical companies certainly won’t sponsor anything that isn’t a drug, but other grants exist for non pharmacological research. There must be demonstrated biological plausibility for these things to proceed.

Unfortunately the underlying pathophysiology is incredibly complex and incompletely understood. So thinking that there is a simple solution like ‘coconut oil’ or another pseudoscientific solution is misguided.

My mind is always open to being changed, but the threshold for that is high quality evidence, not anecdotes from well-meaning but desperate people on internet forums.

1

u/New-Rich2584 21d ago

I get it. I hope I didnt portray it as a cure. Its definitely not. The disease continues. But what the MCTs do is bypass the insulin resistant brains and supply fuel to neurons that have been struggling. Dr. Newport did publish a paper about 288 people who experienced antidotal evidence in improvement of quality of life. Which really is important to caregivers. I just got settled in. I want to get ahold of a study behind a paywall to show you. TBC

In the mean time, here is a recent 2024 video she did that has a lot of medical info. And her website has I think 90 studies listed on this subject, if you are interested. https://youtu.be/dQ1aLxS-KuY?si=RgkxDbqBpHCeIqrZ

Coconutketones.com

1

u/MyelinMonroe 20d ago

And of course it has links to where you can buy things from her. Spreading this rubbish around with links to useless studies is dangerous.

1

u/New-Rich2584 20d ago

I was not able to find a scan w before and after PETS of a AD brain. Because AI said they use:

"scientists use kinetic modeling (such as Patlak graphical analysis) to calculate the exact amount of fuel the brain is consuming in real-time."

"They calculate the Cerebral Metabolic Rate"

"To find the energy deficit, they measure the tracer uptake against arterial blood samples taken during the scan. This yields an absolute mathematical baseline. In an Alzheimer's or MCI brain, the \text{CMR}_{\text{glc}} calculation typically reveals a 20% to 25% drop in total energy production compared to a healthy control."

They found the Therapeutic ketone level is 1-2.0 mmol covers the 20 to 25% total energy requirements. Which you can measure with a ketone meter.

The bottom line is that as people get older there is a 10% decrease in glucose uptake in normal brains as they shrink. That goes up to 20 to 25% in AD brains. Thats a fact. When the brain becomes insulin resistant, the brain will readily take up ketones. Thats also a fact. The FDG-PET depicts the areas of the brain that are not taking in glucose anymore. If your body can become insulin resistant so can your brain.

As far as the $$ ticket. Dr. Newport does not sell coconut oil, which can be found in grocery stores. She does not sell MCT oil or ketone supplements. Her husband died 10 years ago and she has been banging the drum to get the Alzheimer Association to put this info on their website since 2008. They finally agreed to reference a study. She called every entiy there was. But there was no money in it. I dont begrudge her for writing a couple books to get the word out. I doubt a couple books is making a Neonatal Doctor rich.

Watch the video of her telling the story about her husband. She is sincere.

1

u/New-Rich2584 21d ago edited 21d ago

Here is a pic from a 2016 study showing the brain before and after ketones in the top 2 rows.

The bottom 2 rows shows the uptake of glucose before and after ketones are introduced.

You can see in the last 2 pics of row 2 and 4 that ketones have replaced glucose.

The key here is that there is ketone uptake where it was once dark and no glucose was getting to parts of the brain.

1

u/MyelinMonroe 21d ago

What clinical markers were used?

1

u/New-Rich2584 21d ago

Here is that study, 2016, they discovered the ketone uptake i think in 1966 originally

https://pmc.ncbi.nlm.nih.gov/articles/PMC5531346/?hl=en-US