Interpreting these results

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
butimaprofessor
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Interpreting these results

Postby butimaprofessor » Fri Nov 17, 2017 10:05 am

Hi. I read the New York Times article today and am really happy to find this forum. I'm 34 and I'm a research professor (my brain is my most precious thing), and I did a 23 and me profile on a lark about five years ago. I panicked when I saw the results and didn't log in again until today.

I have two copies of the APOE e4 variant, which I think based on my reading here we call 4/4? I can't really understand what this means in practice. I can't tell if my report has more specific information in it, and I don't see much here about how to read the reports beyond the 4/4 thing. Does it matter what SNPs they used to do the test? Or the variant? What does genotype CC mean? Sorry, I have read around on here, but am still a bit confused.

It says "39.9 out of 100 women of European ethnicity who share your genotype are estimated to develop Alzheimer's Disease between the ages of 50 and 79." That doesn't sound good to me.

So, what's happening here? And more pressing, what do I do? I see lots of advice but it seems to boil down to the standard "eat food, mostly plants; avoid sugar; exercise; get enough sleep; keep your weight low." OK, will do. But what else? I want to keep on top of the science, but I do not even know really where to start, and the information here is gold but is also overwhelming.

Thanks for creating this space; I will be reading a lot more here.

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Re: Interpreting these results

Postby hill dweller » Fri Nov 17, 2017 10:15 am

Most folks here follow most of the Bredesen protocol. Get your hands on a copy of Dale Bredesen's book "The End of Alzheimer's." I got my copy from the local library. That will make you familiar with the possible biology behind the various types of AD, the blood labs you should run, the supplements you may consider. And read the Getting Started primer, too, on this website.

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Stavia
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Re: Interpreting these results

Postby Stavia » Fri Nov 17, 2017 10:30 am

hi Professor and welcome. I presume your academic field is in the Arts. I would feel totally lost in sociology or economics for instance, if I had a personal and urgent reason to need to get my head around those fields.
Your best approach IMO is to educate yourself in the field of biology and biochemistry. You are still very young, apoe4 is a risk for LATE oneset Alzheimer's. You have at least a couple decades to learn, and to wait for advances of understanding and therapeutics in the field.
I wrote the Primer (and its associated glossary) for those like you - who need to start from scratch and feel overwhelmed. Start there, before you read Bredesen's book. It explains how DNA works as well.
viewtopic.php?t=1418

Nobody can give you an accurate lifelong risk prediction. But your risk today, this year, even this decade, is no greater than someone who is not 4/4. Take your time to learn. It will take time. You have the time, you are not at risk today.

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Re: Interpreting these results

Postby butimaprofessor » Fri Nov 17, 2017 10:40 am

Yes, I am a social scientist and am basically a sociologist. How did you guess! :) I have read the Primer and I am going to need to chew on it a lot more. I will also look at Bredesen's book. Honestly, I am less concerned with my own individual experience (cognitive decline is terrifying to me, but also, life is death, and this decline is part of the experience for some of us) and more concerned about what to do on a more global scale about it all, if that makes sense (the parts of the NYT article that discussed patient advocacy were very intriguing to me), but I will keep reading and thinking. I think I made my original post more as a way to say "hello, me too," although I also am still very confused about what this all means. Thank you for reading and for taking the time to reply.

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Stavia
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Re: Interpreting these results

Postby Stavia » Fri Nov 17, 2017 12:07 pm

Professor, that's two of us confused about what it all means both on a micro and a macro scale.
I'm currently rereading Noah Yuval Harari's Sapiens, possibly why I chose sociology as an example of an alien field to me. I do find societies fascinating, most of all virtual societies, of which I guess this community is an example. (my interest was piqued by over a decade of immersion in virtual gaming societies such as World of Warcraft where the social structure is intrinsically anarchic, yet an agreed barter system, economy, behaviour system, language, social norms etc all evolve de novo.)

but I digress...what I really mean to say is I firmly believe that innovations will come from cross-disciplinary dialogue. You are so very welcome to our community, please share your insights from your perspective.

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sylvieJ
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Re: Interpreting these results

Postby sylvieJ » Fri Nov 17, 2017 2:53 pm

Hello Butima
and welcome to the forum!

We are happy that you found this community.

I believe reading Dr Dale Bredesen's book is another good start as suggested.

There are many experienced members in this community who have a wealth of knowledge and experience. I'm happy that Stavia has already given you some information to consider. Please reach out and post your questions. We are all here to share and support.

Many regards
Sylvie

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Re: Interpreting these results

Postby butimaprofessor » Thu Nov 23, 2017 8:11 pm

I've been chewing this around in my brain and I realize I kind of want to talk to a doctor about this. What kind of doctor should I talk to? A general practitioner? A geneticist? Are there things I should worry about like for example my insurance company knowing I know this about myself? Could that hurt me in the future?

I honestly wish I didn't know I was 4/4. It seems like I can't do much with this information, really, and like all it does is open up new questions. Like, I am single. Do I have to tell people I'm dating about my status? When? Can I keep it to myself?

I feel pretty fine with the stuff in my control like diet and exercise, but the interpersonal parts feel very overwhelming.

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Re: Interpreting these results

Postby Stavia » Fri Nov 24, 2017 12:28 am

I'd personally not tell non-medical people until I had got my head around it all. And frankly, most general practitioner doctors will not even know the gene exists.
Most of us arrived on the forum looking for support that we did not get from our doctors and specialists.
And careful about what may go on your record. Despite me asking my GP not to write anything down in my notes (when I went to him in panic 4 1/2 years ago) he did, and it nearly stopped me changing my life insurance policy to a different kind of policy recently.

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