New to the list

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Lindy
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Re: Oops

Postby Lindy » Mon Feb 12, 2018 3:32 pm

I botched my reply by somehow submitting it twice. I don't know how I did it or how to pull it back, so apologies to everyone!

Lindy

Reason: Lindy posted this apology for submitting previous post twice, but someone already deleted dup. post. No apology needed.
APOE-ε4/ε4 on the voyage of discovery.

Lindy
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Re: New to the list

Postby Lindy » Mon Feb 12, 2018 4:00 pm

SusanJ wrote:Hi, Lindy, and first off welcome. Sorry you have faced so many challenges. And good for you that you have been interested in your own health and done a lot of reading!


Thanks, Susan! It's funny how all the reading I did before did not prepare me for this unique situation, but I'm always willing to learn.

Lindy wrote:How did you personally choose which protocol you thought would work for you?


I started many years ago, before anyone had a protocol, before functional medicine, by working with an integrative doctor who actually didn't test much or push supplements. He went by how one felt. Gluten makes your joints ache? Throw it out of your diet. Stressed? Take up meditation and yoga. And eat some meat now and then. (At the time, I ate a lot like you do now, vegan with some fish and for me, eggs.) And his advice helped, a lot. Since then, I did genetic testing and found out about E4, and MTHFR and a handful of other bad gene actors, so have spent more time understanding what my specific genes suggest I should be doing for optimum health.

SusanJ wrote:And just a couple of off-the-top observations.

Not sure where you got the idea that you should eat more saturated fats. Bredesen, for example, says use MCT oil to make the shift to creating ketones, but encourages healthy mono-saturates like avocado, EVOO and nuts for the long run. Many of us see shifts in lipid panels with the addition of saturated fats, some good, some bad, so it differs between folks.


I'm not sure how much leeway I have to experiment with this. My baseline condition already includes high cholesterol and BP, despite my diet and lifestyle, so just thinking about consuming MCT oil gives me the heebie-jeebies. I've kept a strict limit on the amount of avocado and other saturated fats to conform to other health guidelines for keeping my conditions in check. I wish I had more medical training. It feels hard to reconcile the apparent contradiction between what's supposedly healthy for my cardiovascular system and what's healthy for my brain. My mentor in nonprofit work years ago died at age 50 of a heart attack, and my father had extensive cardiovascular disease, so I've been religiously following American Heart Association guidelines (no more than 7% of calories from saturated fat).

SusanJ wrote:Eating a mostly vegan diet, do you know if you are getting enough choline, or are you supplementing choline is some manner? I ask because you need choline to make acetylcholine and other useful biochemicals needed for good brain function. (And a deficit can lead to depression.) Being under stress can make you burn through both methyl groups (B vitamins) and choline.


Thanks for pointing out the choline issue, Susan. For the past year or so, after noticing I was chronically short on choline (Cronometer is such a useful tool for this), I've been supplementing choline with Jarrow's Alpha GPC, because it is apparently more bioavailable than most. That was on the recommendation of my natural foods store pharmacist.

SusanJ wrote:And stress, yep, it will throw every metabolic and neurotransmitter process out of whack. (I know, just saying you have to manage stress feels, well, stressful!) When I have an off day, I always ask, did I get enough sleep? Am I stressed about something? And have eaten reasonably well? Instead of thinking your memory is bad, maybe shift your focus to fixing what isn't working for that one day? String those actions together and you might find strategies that help you improve over time.


This is funny because I do stress about stress! Thanks for the reminder to chill and reflect on all this.
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Re: New to the list

Postby CoachDD » Wed Mar 07, 2018 2:31 pm

Greetings to you Lindy - your first post resonated with me on so many levels. . . I was recently "confirmed" (E3/E4) and have been strangely going from pissed off and devastated to a real sense of calm/peace in knowing what I'm dealing with - and certainly determined to win the battle.

I'm not a doctor (and would highly recommend you speak to yours) and I would ask the moderators/admins to pipe in on this subject, but I've been actively researching and learning so much about coconut oil (CO) and MCT. Over the past week, I've been watching the Regain Your Brain docuseries - see link (don't be fooled by the name - it is the correct link): http://links.cancerdefeated.com/a/746/c ... ab8c613db4

The latest episode featured Dr. Mary Newport who has written two books (Alzheimer's Disease - What If There Was a Cure? and The Coconut Oil & Low Carb Solution for AD, Parkinson's and Other Diseases). In this series, she highlighted the benefits of cooking and ingesting these oils. Her husband was struck with early onset (in his early 50s) - he was declining so rapidly that they were ready to put him in assisted living. She was scrambling for answers and help and stumbled upon a medical food clinical trial which included CO and MCT. She decided to try it and was simply amazed at how quickly his symptoms turnaround (same day improvement, then vastly better within two weeks - he continued to improve for months until leveling off). Several years later, he is still doing well.

Most importantly I want to point out that she states that these saturated fats convert to energy or ketones - they do not convert to fat. There is a doctor in Canada (she didn't give a name) that has done years of studies on it and he has a great amount of research (and support) of why it is beneficial not only to reverse MCI and AD, but to prevent it.

I'm quite intrigued by this since - I've been taking 3-4 tsp. of MCT oil daily and noticed a MARKED improvement in my energy, sleep and cognitive function. I am at a normal weight - and do not want to risk gaining either (my mother had diabetes). . . from what I understood from the docuseries, MCT oil may actually assist with weight management and will not affect you in the same way other saturated fats will.

I appreciate your dedication to take the bull by the horns. . . and that we are here to support each other in that quest! Best of luck and "see" you around on other forums. :)
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Lindy
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Re: New to the list

Postby Lindy » Wed Mar 21, 2018 3:00 pm

CoachDD wrote:I've been actively researching and learning so much about coconut oil (CO) and MCT. Over the past week, I've been watching the Regain Your Brain docuseries - see link (don't be fooled by the name - it is the correct link): http://links.cancerdefeated.com/a/746/c ... ab8c613db4


Thanks for this link! Unfortunately I took too long to come back online and check it out, and it's dormant at the moment. Sounds like they will be unveiling something in September.

The latest episode featured Dr. Mary Newport who has written two books (Alzheimer's Disease - What If There Was a Cure? and The Coconut Oil & Low Carb Solution for AD, Parkinson's and Other Diseases). In this series, she highlighted the benefits of cooking and ingesting these oils. Her husband was struck with early onset (in his early 50s) - he was declining so rapidly that they were ready to put him in assisted living. She was scrambling for answers and help and stumbled upon a medical food clinical trial which included CO and MCT. She decided to try it and was simply amazed at how quickly his symptoms turnaround (same day improvement, then vastly better within two weeks - he continued to improve for months until leveling off). Several years later, he is still doing well.


I love coconut but I am worried about ingesting a lot of coconut oil. Maybe I'm reading it wrong but this study seems to say that APOE4s are worse off with a high-fat/high saturated fat diet. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5011130/ And there are others that echo these concerns for double-E4s like me.

If I'm reading them right, investing in a lot of coconut oil seems like a scary gamble to me, even though so many people (like you) feel great on it. One tablespoon has 12 grams of saturated fat and very little of poly- or mono-unsaturated. Since I'm a double-E4, there's a lot of scuttlebutt out there that is contradictory about whether I should touch this stuff. The risks are great on every side. I've been doing well on extra virgin olive oil so far. (Also the ketosis part is problematic for me - I'm having trouble keeping the little weight that I have!)

I appreciate your dedication to take the bull by the horns. . . and that we are here to support each other in that quest! Best of luck and "see" you around on other forums. :)


Thanks, Coach! We sure are in a maze together.

Lindy
APOE-ε4/ε4 on the voyage of discovery.

CoachDD
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Re: New to the list

Postby CoachDD » Thu Mar 22, 2018 8:57 am

Lindy - it sure is the ultimate maze!

I ended up purchasing the digital set (as I'm sure many did), so I'm wondering if some folks can help by digging into it and providing information for specific areas/topics you are interested to learn more about.

There are also FMCA (Functional Medicine Coaching Academy) coaches on this forum who are trained in the Bredesen Protocol, so please consider outreaching to them for even more guidance.

I am curious about other opinions on MCT oil - I have only heard the positives and not aware of concerns with 4/4 and saturated fat. I welcome any feedback from the admins.
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Re: New to the list

Postby CoachDD » Sun Mar 25, 2018 4:25 pm

Thought I'd share the episode I was referring to - happy viewing!
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Re: New to the list

Postby slacker » Sun Mar 25, 2018 5:15 pm

Dr Bredesen supports the early use of MCT and/or coconut oil as a tool to get into ketosis for ApoE4s, but ideally only while dietary changes are being made to allow ketosis with minimal saturated fats (The End of Alzheimer's, pgs 180, 184). From reading our website over the past few years, it seems that Dr Gundry is no longer supportive of coconut oil and on the fence about MCT for ApoE4s. There is an entire thread on Dr Gundry's diet advice for ApoE4s.

On the other hand, we have members who eat saturated fats from animal sources (free range and grass fed) liberally, although I don't think that MCT is a part of their plan. Kind of doubt coconut oil as well, but we'd need them to weigh in to clarify their personal food habits. A recent thread on saturated fats is here.

I tend to be skeptical about cognitive solutions that seem too easy. It's quite possible that some people will respond well to one simple intervention, but most will probably need a protocol that covers more angles. Just my opinion based on observation.
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