So much information and I am confused

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
MelodieGraber
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So much information and I am confused

Post by MelodieGraber »

Good morning,

I have one copy of ApoE4 and so much Alzheimer's on my mother's side of the family. My mom passed at 91 after struggling with the disease for almost 20 years. She had five siblings all of whom died of Alzheimer's except one. My maternal grandmother also had the disease.

I am an RN and love information. However, I have found myself very confused. After reading Dr. Bredesen's book, I decided to be tested for the gene. I never wanted to know before. I paid the $1400 and had my labs drawn and got a ReCode Report. I am already an avid exerciser. I have been a long distance runner for over 20 years and I also regularly weight lift. I have also been brain training for decades so those changes were not needed. The diet changes have been difficult but I am struggling along and doing the best I can. My ReCode Report told me to eat 2 T of MCT/Coconut oil daily but I've been hearing now that ApoE4 carriers are not supposed to eat saturated fat. I am a bit concerned about why my "personalized" report would tell me to do something that Dr. Bredesen disagrees with? I find that very frustrating. There are many other contradictions in the program that I have found. It is hard to know what you should eat and what you shouldn't eat. And where does Quality of Life play into this equation? If I eat so strange that I am never able to enjoy food with my family or in social circles, doesn't that defeat the purpose?

The low carb high fat diet has been a challenge for me as a runner but I'm doing better than I did originally. I haven't noticed any other amazing changes with the diet. I don't normally get sick but I've had two very bad colds that knocked me down hard since eating this way. I have an appointment with Dr. Hathaway next month and will be very interested to have her input. I had to wait six months to see her.

Anyway, don't mean to sound quite so negative but it is hard to know what to do with all this information and how best to care for yourself. Thanks for reading.
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Julie G
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Re: So much information and I am confused

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The diet changes have been difficult but I am struggling along and doing the best I can. My ReCode Report told me to eat 2 T of MCT/Coconut oil daily but I've been hearing now that ApoE4 carriers are not supposed to eat saturated fat. I am a bit concerned about why my "personalized" report would tell me to do something that Dr. Bredesen disagrees with?
Welcome, MelodieG! I agree, very confusing. I know that Dr. Bredesen does transitionally recommend MCT/coconut oil for those who currently have insulin resistance and/or symptoms of cognitive decline. Could you possibly fall into either category?
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Re: So much information and I am confused

Post by Plumster »

MelodieGraber,

Generally speaking, we e4s should avoid too much meat, dairy, and sugar and eat primarily plant based. Maybe you would be better off starting with the Mediterranean diet or one of the other diets that have stood the test of time? It's so personal, and there's no one right answer.
Last edited by Plumster on Fri Apr 19, 2019 10:46 am, edited 1 time in total.
e3/4 MTHFR C677T/A1298C COMT V158M++ COMT H62H++ MTRR A66G ++ HLA DR
MelodieGraber
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Re: So much information and I am confused

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"Welcome, MelodieG! I agree, very confusing. I know that Dr. Bredesen does recommend MCT/coconut oil for those who currently have insulin resistance and/or symptoms of cognitive decline. Could you possibly fall into either category?"

My A1C was in optimum range as is my fasting insulin level. My fasting glucose was 93 so maybe? My LDL cholesterol was a bit high and has been for years. The Coconut Oil was specifically recommended to bring down my cholesterol which makes no sense to me based on what I read about the way ApoE4 carriers manage lipids.
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Julie G
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Re: So much information and I am confused

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My A1C was in optimum range as is my fasting insulin level. My fasting glucose was 93 so maybe? My LDL cholesterol was a bit high and has been for years. The Coconut Oil was specifically recommended to bring down my cholesterol which makes no sense to me based on what I read about the way ApoE4 carriers manage lipids.
Ninety-three might be a bit elevated, but is only a small part of a broader clinical picture. Would you mind sharing your actual numbers- A1c and fasting insulin? What's your BMI? (You sound really active- kudos!)

I agree. Recommending coconut oil to bring down LDL cholesterol makes no sense for an ApoE4 heterozygote; hence my questions about your glycemic markers. Also, did you report any concerns about cognitive decline? Dr. Bredesen is finding central insulin resistance (even in the absence of normal peripheral markers) in those with cognitive decline... which might account for the recommendation. The idea for our genotype is to only use MCT/coconut oil transitionally until we can address IR and/or cognitive decline and then switch to using primarily unsaturated fats like high polyphenol EVOO, olives, avocados, nuts, seeds, fatty fish, etc with a heavily plant-based diet.
MelodieGraber
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Re: So much information and I am confused

Post by MelodieGraber »

Hi Julie,

Thanks so much for your responses.

My fasting insulin was 3.8 and Hemoglobin A1C was 5.3. My BMI is 23.4 - it has fallen some since starting this protocol - I was 24.5 before. The ReCode Report required an entry for a date of beginning cognitive decline so I just put in today's (the date when I did my report) date. Maybe that was construed as symptoms? I did report my AQ-21 score as zero and my MoCA score as 30 so test results certainly showed no cognitive decline.

Giving up dairy entirely is so unappealing to me and with all the other sacrifices, I'd have to be convinced that the desired result is compelling. I don't eat a lot of dairy but I do put some cream in my coffee and I do eat some cheese.

It feels like every time I read a study, somebody has something new to say. I really don't want to hang my entire life experience on something that isn't scientifically based. When I read Dr. Bredesen's book, I felt that it had enough basis for me to make some significant changes.
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Re: So much information and I am confused

Post by LOL444 »

Hi MelodieG! Welcome to the forum. You have found a great resource for information at this site. I can completely relate to your situation. I also have one gene and I love coconut oil and MCT oil. After I read Dr Bredesen's book, I cut down on coconut oil. But the reality is, you need to find what works for you. From your description, you already have a lot of amazing lifestyle habits and you should applaud that. I see that you have already received a lot of responses with some great advice. Just remember that it is still your life and you have to make it work for you.
Dare to live a powerful life!

LOL444, Health and Wellness Coach
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Julie G
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Re: So much information and I am confused

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My fasting insulin was 3.8 and Hemoglobin A1C was 5.3. My BMI is 23.4 - it has fallen some since starting this protocol - I was 24.5 before. The ReCode Report required an entry for a date of beginning cognitive decline so I just put in today's (the date when I did my report) date. Maybe that was construed as symptoms? I did report my AQ-21 score as zero and my MoCA score as 30 so test results certainly showed no cognitive decline.
I agree, no sign of cognitive decline- hallelujah! The DX of IR should take into account broad parameters and is highly individualized based upon one's individual fat threshold. I was IR with a BMI of 22.2 but I'm very small-boned. I had a belly and was unable to fast, sometimes even through the night. Below see some additional criteria to help you decipher where you stand:
  • • Abdominal fat (visceral)
    • Inability to fast
    • Hypoglycemic episodes (low blood sugar)
    • BMI >25 (body mass index)
    • Fasting glucose >114
    • Fasting insulin >4.5
    • Hemoglobin A1c >5.7 (a test that measures the glucose average over three months)
    • HOMA-IR >1.4 (Calculator here.)
Giving up dairy entirely is so unappealing to me and with all the other sacrifices, I'd have to be convinced that the desired result is compelling. I don't eat a lot of dairy but I do put some cream in my coffee and I do eat some cheese.
That was the hardest for me too, but giving up cream in my coffee actually helped me dramatically lower my LDL-C. I still indulge in a little bit of A2 dairy; like occasional goat cheese in my salad.
It feels like every time I read a study, somebody has something new to say. I really don't want to hang my entire life experience on something that isn't scientifically based. When I read Dr. Bredesen's book, I felt that it had enough basis for me to make some significant changes.
Agree! I actually feel heartened by all of the similarities that I see in many different approaches. Feel free to talk about the science here. That's what we do. ;)
MelodieGraber
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Re: So much information and I am confused

Post by MelodieGraber »

I certainly appreciate the responses and the support. Based on the criterion you posted for IR, I wouldn't say that I am an overwhelming candidate. I am still a little uncertain about what I should do regarding the recommendations with coconut oil. I see Dr. Hathaway in about a month and will be close to due for my six month labs. I guess the tell tale evidence will be what has happened with my LDLs through this six month period. From a genetic perspective, this is interesting. I have no heart disease in my family although higher than normal cholesterol is consistent with all my siblings (and there are seven of them-all older than me). We tend to have both high LDL and high HDL. Neither of my parents had any heart disease either and both passed in their 90's. Although my mother had Alzheimer's, she had no heart disease at all. In fact, I prayed her heart would stop beating long before it did. If I'm understanding correctly, ApoE4 carriers have a higher than normal risk of heart disease as well as AD. But in my family, that certainly has not rung true.
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Julie G
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Re: So much information and I am confused

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I am still a little uncertain about what I should do regarding the recommendations with coconut oil. I see Dr. Hathaway in about a month and will be close to due for my six month labs. I guess the tell tale evidence will be what has happened with my LDLs through this six month period.
ApoE4 carriers exhibit a reduction in cerebral glucose utilization that worsens with IR, menopause, and as we age. Ketones can overcome that deficit and help to fuel your brain. MCT/coconut oil generates a fairly immediate increase in ketone bodies. From the description of your report, it sounds like mild ketosis is being recommended for you. Are you measuring your beta-hydroxybutyrate (BHB) so you can see where you stand? The goal is to achieve a range between 0.5mM-4.0mM. Many of us get there without MCT/coconut oil simply by combining a long daily fast, exercising, and prioritizing Mediterranean fats (EVOO, olives, avocados, nuts, seeds, fatty fish) in the context of a heavily non- starchy plant-based diet. Some people with IR, transitionally need the MCT/coconut oil as they work to extend their fast. Dr. Bredesen recommends at least 12-16 hours for our genotype, with at least 3 before bed. Keep asking questions, my friend. This is complex and we're all on the same journey of health optimization.
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