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Thrive: a newcomer and ApoE4 homozygous

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Thrive: a newcomer and ApoE4 homozygous

Postby Thrive » Sat Feb 10, 2018 11:56 pm

Dear ApoE4 friends,

I am excited and anxious all at once to join all of you. My father and aunt (on my mother's side) are both in the end stages of AD, and I just got my results back from 23andMe that I am homozygous for ApoE4... Lots to contemplate!

I am a 51 year old woman: a scientist by training (PhD in chem and postdoctoral work in biology and molbio) and already an avid follower of Bredesen, Mercola and Perlmutter. I've been practicing intermittent fasting for the last year and am on a pretty much no sugar/grains diet. I am mother of three, married and a the primary breadwinner for our family.

Now knowing that I am ApoE4 homozygous, I have the following questions: (1) Is there a strong benefit towards getting my full genome sequenced to learn about additional SNPs and GWAS that are correlated and either amplifying or mitigating my dominant ApoE4 genotype; (2) would you recommend that I dive into getting tested for all of what is recommended in terms of testing, in "Ending Alzheimer's" to set a baseline for future reference; (3) is there anything known currently about whether ApoE4 homozygous carriers exhibit early warning signs of cognitive decline? If so, what are the symptoms?

With gratitude for your wisdom and hoping to help by contributing mine to yours some day,
Thrive

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Re: Thrive: a newcomer and ApoE4 homozygous

Postby Searcher » Sun Feb 11, 2018 7:18 am

Welcome, Thrive!

What an amazingly accomplished person you are, and what a wonderful user name! I'm sure you can help us all to take an even more scientific and informed approach to thriving.

The advisable tweaks in lifestyle according to SNPs are at present quite limited. We keep looking for emerging studies and information. In the current state of knowledge, very few lifestyle decisions and choices depend on full SNP mapping.

What would enable you to thrive better, with a minimum of anxiety or pre-occupation? That's probably what you should choose, in terms of studying your own SNPs. Pre-occupation and anxiety boost cortisol, which tends to undermine the benefits of all the other tweaks. Living with calm confidence, cultivating meaning and joy, boosts well-being in many ways.

Looking forward to your participation.

You'll soon have an even heartier and more informative welcome from the support team here.

Keep thriving!

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Re: Thrive: a newcomer and ApoE4 homozygous

Postby Jan » Sun Feb 11, 2018 8:23 am

Welcome, Thrive! Your choice of name tells me immediately of your positive nature and intentions.

Further testing is always an individual choice. Focus on diet and lifestyle is the cornerstone for good health going forward, and you seem to be well ahead of the curve in that regard. That said, many on the site have run their 23andMe raw data through various avenues for further interpretation. [[[ Examples: https://promethease.com/ , https://www.foundmyfitness.com/ (Dr. Rhonda Patrick, who is E3/E4), Strategene https://www.drbenlynch.com/product/strategene/ (Dr. Ben Lynch, who also has a recent book out, Dirty Genes ). ]]] Functional Medicine’s James Maskell shares Viome’s interpretation of his genetic testing here: https://www.youtube.com/watch?v=K46Ffwpd_gE

Many on the site do quite a lot of baseline testing. Reference points help us interpret results more clearly, and can show us emerging patterns we might otherwise miss. You can evaluate all that is recommended, and decide which you think would benefit you in future.

Being homozygous for E4 elevates your risk for ‘late onset’ AD. Site founder and president Juliegee speaks about issues she began noticing in this video: https://www.youtube.com/watch?v=KDnrN--NVYM .

It’s important to remember that genetics is not destiny. So many factors play into the future, and which genes do – or do not – turn on. And you don’t want to lose focus about other issues involved, including the possibility of cardiovascular disease.

You're familiar with Bredesen, Mercola and Perlmutter - wonderful sources. Please let me mention one other, Dr. Steven Gundry. He is a cardiologist, who has extensive experience in treating E4s, and is followed by many members on the site - who have in some cases shared their continuing excellent results with us.

We have interns on the site, who will soon greet you, and point you toward some of the practical aspects of the site. Meanwhile, we look forward to more questions, and to what I know will be valuable contributions from you in the future.
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Re: Thrive: a newcomer and ApoE4 homozygous

Postby Fiver » Sun Feb 11, 2018 9:45 am

Hi. Fellow scientist (biochem, natural products) with three kids and family history here. I also follow the basic protocols. You seem well-read on the subject. I'd offer only two pieces of advice from my experience. First, find a good functional medicine type doctor and let them take their ~15 vials of blood to do a complete work up. Otherwise you're just guessing about your personal version of the protocol. It's a little expensive at first, but a good investment. Second, you may attack this with the logic and knowledge of a trained scientist but that doesn't mean you'll be immune from the emotional roller coaster. Just beware if you find yourself reading journal articles all the time and not enjoying life. This is especially true when's you care for family with AD - sure it's added motivation but also stressful.

PS - if you could use your chem skills to turn avacados and fish oils into healthy crunchy snack foods or strawberry cakes that would be awesome. Just an idea.
Concerned, but hopeful. Introverted, but will talk about science.

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Re: Thrive: a newcomer and ApoE4 homozygous

Postby SusanJ » Sun Feb 11, 2018 9:47 am

Welcome, Thrive. I look forward to your perspectives in our discussions!

Tom wrote:PS - if you could use your chem skills to turn avacados and fish oils into healthy crunchy snack foods or strawberry cakes that would be awesome. Just an idea.


Now wouldn't that be something! I'd be second in line, after you. ;)

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Re: Thrive: a newcomer and ApoE4 homozygous

Postby Thrive » Wed Feb 14, 2018 7:15 am

Thank you for all the kind replies: your welcome and information are reassuring and I am excited to have found this amazing group and set of resources. Your answers to my questions helped substantially, but now I have a few more... Many thanks in advance for helping me with any answers or perspectives you have on these!

With gratitude,
Thrive

(1) It sounds like you agree that some thorough baseline testing to know where I stand on with various lab values is a good idea (i.e., Tom's advice). For that do many of you do this as a part of Dr. Bredesen's RECODE protocol? From what I have read, it looks like he has developed software that inputs all the lab values to generate a personalized profile and set of interventions that should be applied to provide the most benefit... This also requires a monthly subscription so I am wondering what this group's thoughts are on the value of investing in that service...
(2) I did input my 23andMe data into Promethease and now have a much more complete report of their findings. From that, the only new detail that seems connected is that I have SNP rs4420638. The Promethease info about this SNP seemed to say that mostly it is correlated with the E4 mutation but does not confer an additional or mitigated risk for getting AD. Is that correct and should I be on the hunt for other details related to AD in my Promethease report?
(3) The video of Julie talking about the first signs she noticed of Alzheimer's is helpful, touching and inspiring: thank you for pointing me to it. I have not experienced in of the episodes she described. That said, I do have a hard time remembering names with faces and this has been true since my early 20's. I work in global health now with a wide variety of teams in different places around the world so I rationalize that my struggle to put names to faces is reasonable since I interface with 100's of people.
(4) Jan mentioned that "interns on the site" would soon be getting in touch to help me orient to the plethora of information you have. Will they contact me through this thread or in some other way?
(5) Thank you for mentioning Dr. Steve Gundry as another important resource! I went ahead and ordered "Plant Paradox" and look forward to receiving it soon. Does he have other AD-specific resources that you would recommend?
(6) I have had great "term" life insurance but think it needs to be renewed soon. Given this, should I pay for any baseline testing/genetic counseling I do out of pocket to avoid this becoming a part of my insurance record? Are there long-term insurance plans that people on this site would recommend (that can help offset the costs and burden for my family of specific care I may need if I get AD later in life)?
(7) I recently heard a podcast describing something like an advanced medical directive that was intended to help people who are at higher risk of dementia/AD put a plan in place so their loved ones can have that to simplify any necessary decision-making that is needed. Is anyone here familiar with these and would you recommend putting something like this in place?

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Re: Thrive: a newcomer and ApoE4 homozygous

Postby Jan » Wed Feb 14, 2018 8:31 am

Thrive wrote:.
(4) Jan mentioned that "interns on the site" would soon be getting in touch to help me orient to the plethora of information you have. Will they contact me through this thread or in some other way?

Thrive, I thought I saw a post to you from one of the interns, but don’t see it now, so I’ll chime in here to explain a bit. The site Primer can be accessed by clicking Welcome at the top, and you’ll find a link in the second paragraph I think. It was written by physician member Stavia, and contains a great deal of information that will explain a lot of terms, theories, etc. What I like particularly is that it clearly delineates ‘settled’ issues (unfortunately, not a whole lot of those), and issues that carry differing views (we disagree with ideas on this site, not with people - per our community guidelines, which are carefully monitored by Moderators).

The site search engine is the three stacked squares st the top right of each page. They give you access to multitudinous threads, wherein we’ve discussed thousands of topics over time. It’s a gold mine.

If you quote someone you want to reply to - as I did you here - that person gets an email, telling them they were quoted. If you address a question to a particular person in a post, that’s the best way to make sure they see it. (We’re all volunteers on the site, many with day jobs, and not everyone is on the site everyday.).

The interns on the site are Practicum students in the final portion of their training program at the Functional Medicine Coaching Academy. Their blue badges identify them as interns. ApoE4.info has an affiliation with FMCA, and interns are allowed to offer very inexpensive coaching sessions to members who would like to participate. (Interns are not paid, ApoE4.info receives no remuneration, and no one is obligated to participate.). And though the interns are trained in functional medicine health coaching, the site itself has no specific affiliation, and all viewpoints and affiliations are respected on this site.). This group of interns is the second group. I and a few others on the Senior Support Team were members of the first group, who elected to continue volunteering. (You’ll see that in our signatures.).

Those are some of the nuts and bolts of the site. Your other questions I’m sure will be addressed by other members soon. (I’m in a class and on my phone at the moment.).
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What is, is. What is, can be changed.

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Re: Thrive: a newcomer and ApoE4 homozygous

Postby Stavia » Wed Feb 14, 2018 9:45 am

Hi Thrive and welcome.
Some answers
1. ReCode is used by a practioner who is trained in the Bredesen protocol so the output will be more nuanced than what you can do yourself
2.I'm personally too scared to look any more
3. Sounds pretty normal
4. Interns are for emotional and practical support for members who are struggling with their chosen protocols. Your best way is just click and read stuff over the next few weeks to get a feel of our community.
5. Not really. But Tincup has collected recordings of his phone consultations with Gundry and has kindly shared them. Somewhere on our very organic site. Maybe in the wiki? Three vertical dots to the right of your name, drop down menu.
6.7. I don't live in USA so can't advise but search "Nords" posts and he has written a heap about future planning and a published book. Search function in the same drop down menu as the wiki.

Sent from my SM-G930F using Tapatalk

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Re: Thrive: a newcomer and ApoE4 homozygous

Postby SusanJ » Wed Feb 14, 2018 11:54 am

Re #2, the problem with snp-hunting is that we can see that we might have some variant, and it might increase our risk of X, Y or Z, but usually the information doesn't come with clear facts about what to do about it. Even MTHFR, which you'll find referenced here and elsewhere falls in that category.

I would encourage you to look at a basic set of labs (focus on the ones out of range, especially fasting insulin, HbA1c and triglycerides, and hormones since you're somewhere around menopause), do an honest assessment of where your health might need attention (diet, gut, exercise, menopause symptoms) and go after that low-hanging fruit first. Even if we have "good" variants of genes, bad living can put stress on so many different pathways, so probably best to fix those basics first.

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Re: Thrive: a newcomer and ApoE4 homozygous

Postby Anna » Fri Feb 16, 2018 11:07 pm

Welcome, Thrive. You are asking some great questions! I learned of my homozygous ApoE4 status just over a year ago at nearly the same age as you, and my head was spinning with questions. Like you said, there is a lot to contemplate! I don't have answers, just thoughts . . .

I too ran my results through Genetic Genie, and eventually, Promethease (where I first saw my ApoE status). It seemed like many of my other genes fed directly into Alzheimer's: hereditary hemochromatosis (the mild form), MTHFR, diabetes risk, etc. I felt doomed! But after a lot of frantic research, I have come to two conclusions: 1) ALL disease processes feed into AD and 2) The best way to prevent AD is to take steps to prevent and address all disease states. Everyone's process is different. I am loosely (and at my own pace) following Bredesen's approach; I just personally couldn't take it all on at once. I think the single most important thing I've done was to find a good functional medicine doctor (This itself has been quite the journey!). As for those other SNPs . . . I do think it has been helpful to know about some of them. I see them as opportunities!

It was really hard in the beginning to not have my genetic results color all of my day-to-day activities and decisions. Although I'm still working on this, I think it has been crucial to focus on things that have nothing to do with my genetic risks and current health challenges. I'm only now starting to ask the questions you are asking about things like long-term care policies.

Knowing my ApoE status also colors my perception of myself. You mention forgetting names and that you have always had that difficulty. I have always been poor at anything involving spatial orientation, even as a child. I clearly was not developing AD as a child, but when I get confused about direction now, it's hard not to panic and think I'm experiencing cognitive decline. Same thing with word substitutions -- something I have always done that is only now a source of angst. I'm guessing that this self doubt is normal.
~Anna
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