Lisa in LJ

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Julie G
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Re: Lisa in LJ

Post by Julie G »

Sandra, do you have abstracts to back up that data re. MCT oil/Axona and E4s? While there are MANY anecdotal reports of E4s benefitting, your information contradicts the published research I've read so far. I know from an email correspondence with Dr. Henderson, that he is conducting new E4 research to be released in 2015. Is your data from those trials?

I've been playing around with pure MCT oil for the first time and had an odd experience. I started by replacing breakfast/lunch with a low carb grass fed whey protein shake with one TBS of MCT oil. OMG. I got hot, flushed, and really jittery/shaky :shock: I checked my ketones about 20 minutes later and I was in pretty deep ketosis (for me) at 1.2mmol/L. I didn't like the feeling. I had an abundance of energy. I did a hard one hour workout and somewhat normalized. I did some poking around and found a few experts that caution against too much MCT oil with a LC diet. Mark Sisson was one. They suggest it's just overkill. It was for me. I'm used to being in mild ketosis, but my body seems to like earning it the old-fashioned way ;) I may try it again during a fasting period in a much smaller dose. My husband has no problem with a TBS. My smaller body weight may be playing a role. Anyone else experience anything similar?

That being said, the research is pretty clear that E4s have trouble utilizing cerebral glucose. Failure to address this sets off a whole cascade of issues leading to neuronal death. I feel certain ketone therapy derived via CR/IF, exercise, LC, or MCT oil (or any combination thereof) will ultimately be the best preventative for E4s.
Lisa in LJ
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Re: Lisa in LJ

Post by Lisa in LJ »

I had done some research regarding Axona and wondered about Coconut Oil and MCT as substitutes. I asked the Neurologist, and although he recommends lots of supplements, he said for this particular purpose, he only recommends FDA approved Axona. At $70 a month, it's not cheap, but at $2.33 a day, it's well worth it to see if it works. I'm paying for it, and after all, I used to waste at least that much on soft drinks before I quit them!

The research you cited is interesting. I hope it is true for my mom. I have been considering going by the health food store and getting MCT for me. Since I'm not showing symptoms yet, I am willing to forego the FDA approved stuff!
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Re: Lisa in LJ

Post by Sandraz »

Hi.
What I read about MCT oil is to start of low and then build up if you want to go higher. In the AM I have very low ketones, which is normal for the morning. Anyway, I drink a modified formula of bullet proof coffee. It's got the MCT oil, with a little of milk. I have recently dropped from 1 TB to 1/2 TB with no change in affect. And yes I feel almost hyper afterwards, for several hours. Lots of energy. And my ketones shoot up pretty quickly,too. Since I am eating many more veggies these days, which almost kicks me out of ketosis, this is how I attempt to stay in it. Once I drink the coffee with MCT I usually don't eat breakfast for a few more hours because I am not hungry and I assume that gets my body's ketones going.

Here are the links to those studies. The CE I did was from a subscription to pharmacist letter and I searched for APOE4 and found it.

17028 Henderson ST, Vogel JL, Barr LJ, et al. Study of the ketogenic agent AC-1202 in mild to moderate Alzheimer's disease: a randomized, double-blind, placebo-controlled, multicenter trial. Nutr Metab (Lond) 2009;6:31.

http://www.ncbi.nlm.nih.gov/pubmed/1966 ... t=Abstract

17029 Reger MA, Henderson ST, Hale C, et al. Effects of beta-hydroxybutyrate on cognition in memory-impaired adults. Neurobiol Aging 2004;25:311-4.

http://www.ncbi.nlm.nih.gov/pubmed/1512 ... t=Abstract
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Julie G
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Re: Lisa in LJ

Post by Julie G »

Sandra, Your use of MCT oil is perfect. It makes sense to start low; then build up. Also, using it to knock yourself into ketosis while upping vegetable intake seems very sensible. I know you're gradually transitioning from a VLC diet. Kudos on still finding a way to stay in ketosis. Any idea if you are actually using less MCT than you were LCT? From what research demonstrates & Dr. Grundy indicates you should be on the path to decreased lipids. I'm eager to see your new numbers. Quick question, any idea of a safe temp for MCT oil to avoid oxidation? I like the idea of putting a little in my coffee but want to keep it fresh.

Lisa, I certainly understand why the pharmacist recommended the Axona- per FDA regulations. Check out this link that compares using pure MCT oil as an alternative. http://www.eat2think.com/2013/05/taking ... l-for.html It might be more cost effective and won't have the added sugar that just exacerbates the underlying problem. You are a caring daughter to sort this out. Your Mom is blessed.

Sandra, my noggin is lost on those studies. Both seem to indicate that Axona is MOST effective on E4 negative patients...yet your CU material states otherwise. Help me understand :? Are those studies the sources for the CU material?

FWIW, you KNOW I'm a believer in this approach; understatement ;) I suspect the research has been largely negative for E4 carriers (to date) due to the multifactorial cascade that begins with loss of cerebral glucose. All trials so far have been on E4 patients who already exhibit signs of cognitive decline. My guess is that for E4 carriers to benefit, we need to utilize this approach preventatively while concurrently managing insulin resistance through carb reduction. WE are the canaries in the coal mine for this approach.
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Re: Lisa in LJ

Post by Sandraz »

Darn. My CE states the results incorrectly. You are right, the abstracts said the improvement was with APOE4(-) and the CE article said the opposite, that the most improvement was with APOE4. Sorry I didn't catch the discrepancy! :oops:
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Re: Lisa in LJ

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Trust me, Sandra, I WANTED you to be correct. I was hoping new data came in that I had missed :? There is still lots of anecdotal and research evidence that cognitively affected E4s CAN benefit- just not to the degree of statistical significance. Study the images from the studies you cited. Quite a few E4s DO benefit.

I strongly suspect that it may be too late for affected E4s to benefit consistently and significantly after a certain degree of neuronal death, and subsequent amyloid and tau pathology, has occurred. IMO, our best chance to utilize this therapy is PRIOR to symptom onset. If we can provide some ketone bodies via carb reduction, exercise, CR/IF, MCT oil to subsidize the impaired glucose uptake/homeostasis that E4s exhibit, we MAY be able to avoid that pathology :idea:
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