8:30 C/L 1.5 x 25/100; .5mg pramilexole; 50/200 C/L ER
9:30 am second dose of mct oil and coffee
10:00 am second dose of .25tsp (for total of .5tsp/day) cinnamon...
Eat around 12:00 - something like mind or Mediterranean diet... definitely not keto...
Here comes the question. I use urine ketone test strips to measure my ketone levels.. the max I have registered is something between .5-1.5, after 18+ hour of fasting!
Is there any evidence (scientific or otherwise) that this is getting to the brain and doing any good?
This is a new regiment for me: 3 days into it...
Thank you.
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Mob0
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Welcome to HU forum. Great job on fasting and low carb… for the third day you are doing amazing, given that there is generally a keto adaptation period.
I have been on OMAD (with keto coffee) since 2019 and OMAD with strict keto since 2021 - inspired by Dr Matthew CL Phillips’ Parkinson’s randomized control trial. You can look into his RCTs in Parkinson’s, Alzheimer’s, Case studies in Huntington’s, ALS and worst type of cancer - Glioblastoma on his website at metabolicneurologist.com/. His Parkinson’s and Alzheimer’s study patients had an average ketone level of around 1.
Yes, there is plenty of scientific evidence (listed in his papers) and it is growing.
I am not sure if there is an established “concentration of ketone” for Parkinson’s. Ketone and glucose levels may vary depending on the time of the day and time of previous meal/keto coffee/exercise/amount of protein, carb... Initially you may want to measure different times of the day and then stick to one consistent time per day.
Blood ketone monitors may be more accurate and are generally considered the standard. Also Glucose, Ketone Index (GKI) may be a better measure than Ketone by itself. This is from the website of the meter I use:
I haven’t been taking keto coffee or exogenous ketones like MCT oil in the last two years.
Dr Matt’s therapy plan with recipes from different cultures/ethnicities is on his website - superb - following the recipes will definitely get good ketone #s.
Hi. Thanks for the reply. I suppose you have found keto diet beneficial for at least some of your symptoms, since you have been on it for that long...
I tried keto 3 years ago (for roughly a year), before I started taking L/C medicine. Either it had helped control tremor/progression or thing had not yet advanced as much, after 4 years of diagnosis. The drawback was that my bad cholestrol had shut through the roof and I actually had periodic heart pain... I stopped that diet... Have you experienced any such issues with keto diet?
My latest test involves intermittent fasting, with some MCT oil addition to see if it increases the Ketone levels.... what you said makes perfect sense. I will need to either get over the couch factor and get a blood ketone monitor or realize that the urine test is reflecting ketone levels from 2-3 hours ago.
My LDL was higher than average but so was HDL too - LDL to HDL ratio was good - so my Primary care doctor was not as concerned. Also my triglycerides were normal.
One of my favorite interviews of Dr Matthew CL Phillips is by our HU member Michel0220 - presentation followed by Q and A from participants. This is a good one to watch for anyone trying keto or intermittent fasting. The LDL question is answered around 1 hr 44 mins.
Fasting may produce higher ketone levels than combining with MCT oil. I used MCT oil for about 3 years but not in the last two years. You can experiment and try ketone measurements with and without MCT.
The human animal has only three sources of energy: Proteins (amino acids). Fat (fatty acids) and Carbs (simple sugars). The capitalized words are what we swallow. The uncapitalized words are the result of digestive enzymes. Enzymes break all ingesta into small enough chemicals that can be shunted into the blood stream, liver, muscles, etc.
When consuming less carbs, the body begins to make ketones. In time the ketones become energy. Ketones become the brain's preferred source of energy. Studies show that children with epilepsy stop having seizures when eating a ketone diet.
In the Parkinson's world, some believe symptoms can be controlled by eating a ketone diet. They may be right, I dunno. I was interested in a ketone diet years ago as a way of losing weight. If you eat a ketone diet--like Atkins--you'll lose weight. At least I did.
But eating Atkins can lead to prostate concerns. At least it did for me. Atkins is a high-fat diet. Typically it's eating 80-90% fat diets. That's been shown to lead to prostate cancer.
So I quit the low carb business. It can be done but prostate cancer goes back three generations in my family. So for me prostate cancer is more of a concern than Parkinson's Disease. Like I said, Atkins can be done but it's not easy if you want ketosis without eating animal fat.
I tried various ways to induce ketosis. Such as eating MCTs. My problem may be that my only Parkinson's Symptom is an arm tremor. Standard medicines control it somewhat but ketone diet doesn't control it any better.
When first diagnosed I went to Dr Google who said an early Parkinson's sign is weight loss. I thought, cool, I'll lose weight.
In one of his talks, Dr. Cunnane states that Insulin stores glucose and also stops ketones from entering the cells.So taking MCT oil and carbohydrates will backfire?
I dunno. Insulin can't "store" anything. IT's a co-factor that allows glucose to enter muscle and liver cells.. If there's no insulin then glucose can't enter and stays in the bloodstream. The body can make energy by using ketones. It prefers glucose but can get by nicely using ketones. In the early stages of ketosis some will spill into the urine. Eventually all ketones get used for energy and none ends up in the urine.
Sorry, I used the store word unintentionally. Here's the relevant discussion:
The problem for the aging brain is that low glucose supply in the blood is not the same as low brain glucose utilization. When blood glucose decreases, ketogenesis normally occurs rapidly in response to decreased insulin. However, when brain glucose utilization is decreased, plasma insulin does not necessarily decrease; indeed, during aging, plasma insulin and glucose are commonly mildly elevated and there is a state of mild-moderate insulin resistance. Hyperinsulinemia inhibits the normal ketogenic response (Bickerton et al., 2008), thereby putting the aging brain in double jeopardy of being deprived of both its primary fuels. We believe that this problem is at the root of the vicious cycle between deteriorating brain fuel uptake/availability and deteriorating brain function that leads to AD.
Notice what mitochondria posted about Glioblastoma and Keto with regards to your brother. It's only a case report, but it seems to be woth trying in additon to standard care for a better long term result. The following is the link to the case report. I'm keeping you and your brother in my thoughts and prayers.
Sorry Scott SAGoodman - prayers are with you and your brother.
Thanks Chris NextStage and Jay JayPwP
I believe the published case report Chris shared, is based on one of the patients who finished the duration of intervention of an ongoing larger clinical trial by Dr Matt and team, with 22 target number of participants. Link to clinical trial - clinicaltrials.gov/study/NC...
The video Jay posted is sharing results of 2 patients who completed the study.
My family follows Dr Matt’s work closely - we met him at the Low Carb USA San Diego 2024 - our second year at this conference. His presentation was on neurodegenerative diseases this time. Dr Matt’s 2023 presentation was on cancer. When we asked about the GBM trial this time, he said they may have enough evidence (about 18 patients) to publish the paper, may enroll a few more patients but the paper writing and review process may take up to a year. He himself does OMAD/Keto and mult-iday fasting as well. I have heard him say in an interview he would try fasting/keto hundred times on himself before trying it on cancer patients.
I was diagnosed with Young Onset PD in 2017, was prescribed pramipexole, could not handle side effects, went off meds for a while, then tried ‘amino acid protocol’ which requires high amounts of mucuna (and other supplements) which didn’t work for me… That’s when I found Dr Matt’s work in 2019 and started OMAD/Keto. Then in 2021, we reached out to him for a family friend who was battling metastatic cancer.
kaypeeoh I suggest you reach out to Dr. Matt (his email is in all his papers) and ask if there are any special considerations for prostate cancer.
I had not. It was quite interesting. Thank you for sharing. The same researcher has other similar research documents online, in case you are interested. Even without keto diet, it appears that increasing ketones may have beneficial effects...
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Time to try some extended release?
Protocol supports hwp.
