Recently learned I am heterozygous for APOE-e4 - Now what?

[bulldog99]

Good morning. I’m new to the message board but not really new to the site. I’ve been reading as much as I can about AD and dementia since my mother and her mother both suffered horribly and passed away as a result of AD. My grandmother wasn’t diagnosed until well into her 70s (she was extremely active) and lived into her 90s. My mother was diagnosed much earlier (in her mid/late 60s) and passed away at 72. The progression of her disease was shockingly rapid and severe.

As for me, I’ll be 52 next week and have three children (a son 26, a daughter almost 3 1/2 and a son almost 2, oh and my wife is 13 weeks pregnant). I am generally physically fit but have noticed over the years an enormous increase in what I’ll call memory-failing moments and word-swapping moments. That and knowing that I very much take after my mom physically prompted me to go to 23andme and get tested. Well my results came back yesterday and through Promethease I learned, no real surprise to me, that I am heterozygous for APOE-e4. My biggest question is, what is the first thing I should do with this information? I know from reading your site, especially the wonderful Getting Started primer by Stavia, that, very generally, I need to change my diet, consider supplements, exercise much more than I currently do and get more sleep among other things. And I have already embarked on making lifestyle changes. But should I seek out a doctor who specializes in AD or other neurological deficiencies? Should I see a cardiologist? Are there other tests I should insist upon from my family doctor? Should I load up on life and LTC insurance before I’m unable to qualify? Any advice you can provide would be greatly appreciated.

[Julie G]

Welcome, bulldog. Wow, you have a big stretch in your kid's ages! Does having little ones in the house once again make you feel young... or the opposite? I recall these early years as being so draining simply from the sleep deprivation. Congrats on your newest (budding) family member- very exciting.

I'm glad you found Stavia's thread. That is chock full of terrific health advice beautifully prioritized. I find myself re-reading it from time to time and I always learn something new.

But should I seek out a doctor who specializes in AD or other neurological deficiencies? Should I see a cardiologist? Are there other tests I should insist upon from my family doctor? Should I load up on life and LTC insurance before I’m unable to qualify?

You ask some great questions. First, YES to LTC and life insurance if you don't already have them in place. Being a heterozygote with a family history doesn't necessarily mean you'll develop AD, but it's wise to get your financial house in order before seeing a physician regarding cognitive issues or your genetic status. Once that information is in your health records, it can make getting those protections more difficult or even impossible.

As far as seeking a physician's help, that's very difficult to find. Physicians in the US who actively treat cognitive decline (aside from prescribing one of several FDA meds that delay symptoms for a short time) are far and few between. Maybe tell us what part of the country you live in and we may have some ideas. Your best bet, otherwise, is to follow the general ideas outlined in Stavia's thread. Dr. Dale Bredesen has reversed cognitive decline in some case studies. Many of us loosely follow his approach. It is outlined in this paper: Reversal of cognitive decline: A novel therapeutic program.

[Stavia]

Hi honey and welcome.
Some basic tests would be useful, maybe there are some simple steps that could help drive the brain fog away.
Why don't you try the protocols we follow for a few months and see if you feel sharper before deciding if a neurologist is necessary?
We can help with a range of simple starter tests if you wish.

[ru442]

Bulldog... you've come to the right place... and yes it is like drinking from a firehouse, but I think the below can help based on my own recent experience (I dropped 16lbs in 2 weeks and now maintaining (148lbs down from 164lbs), feel better and sharper than I can remember in a long time) :

1) Quit smoking if you smoke
2) Quit drinking if you drink, or keep it to a beer or 2 a week, or a glass of red wine with dinner, I know this and #1 are hard but the folks here will tell you #1 is more important than #2.
3) NO SUGAR.... at all
4) NO GRAINS... at all
5) NO CARBS - that means no pasta/bread/cookies/etc., I eat potato's if/when I need the additional carbs
6) Exercise - I have a hard time with this one, but I walk wherever and whenever I can, I've also started chopping wood by hand on weekends

My GP ran a full lipid panel and that is how I found out... if you haven't that would be a good starting point to see where your numbers are. I would definitely see a cardio if the numbers are bad to start, if you can't get them under control then off to a lipidologist (I will be seeing one in the next month or so depending on his schedule).

I can't speak to the AD aspects as well as the others, I don't have any cognitive issues (thank God!), but these folks are smart and can help you to make things much much better....

Good luck and don't give up!

RU442

[bulldog99]

Thank you all for your responses and advice.

Julie, I am certainly counting on the kids to help keep me feeling young but there are times... With my first son, I was working full time and in my first semester of law school (full time at night) so I missed so much of the early years. With the new crew I am engaged in and enjoying every single moment and absolutely loving it. BTW, we just moved from downtown NYC across the river to Jersey City. Thanks much for the link to the article from Dr. Bredesen. I've printed it out (I'm old school) so I can read and digest it later. And I will certainly start looking into LTC (way sooner than I thought I'd ever have to do so but it is what it is).

Stavia, I will definitely take that advice about trying the protocols you all follow before immediately reaching out to a neurologist at this time. I am scheduling an annual physical with my GP which will include blood work and a discussion about sleep apnea (at my wife's prodding initially but now I realize how important good sound sleep is). Any tests you can recommend that I request would be appreciated.

Finally, RU442, I don't smoke so that's an easy one and I've incorporated a glass of red wine most nights into my nighttime routine (started that a while ago mostly for the health benefits of red wine). I am working on your other recommendations so far significantly cutting back on, with a goal of eliminating to the greatest extent possible, sugar, grains, carbs and anything else that is not "good for me" to put it generally.

[Stavia]

Excellent honey.
I recommend starting with some basic foundation biomarkers:
Hba1c
Fasting glucose
Fasting insulin
B12
Homocysteine
Vitamin D
Lipid profile
Apolipoprotein B if your insurance wont pay for an NMR (advanced lipid panel, seriously not necessary at the beginner stage)
Liver functions
TSH
High sensitivity CRP

That's enough to start with
We can help you interpret the results through an apoe4 lens.

[marthaNH]

Welcome, bulldog! I'm 3/4 also, with a parent who died after a long hard pull with Alzheimer's -- a year ago today I was back in Virginia for his funeral. I live in Brooklyn and I don't have the name of the doctor in my frontal lobe at the moment, but Julie and I heard him speak last spring as well about prevention. He is at Cornell-Weill, has a program, and also has a website, but I tried to get interested in the website and just couldn't. I think I have his book somewhere, too. I will look him up but probably somebody else on here will mention him before I get back.

I have learned a tremendous amount in the year and a half that I have been aware of my status and on this site. Sometimes my enthusiasm lags -- this was a tough year until just lately -- but the company and the intelligent, compassionate advice and companionship is worth a lot. Hope it works for you. Good luck.

[hill dweller]

Welcome! Do everything RU442 said, and I would go further with NO alcohol at all until your insulin resistance looks conquered (this will be indicated by your weight, blood labs, quality of sleep), and fitting in some daily exercise (even if it's just taking the stairs instead of the elevator, parking at the fringes of the lots, walking the dog, chasing the kids around the park, etc).

Intermittent fasting works wonders, whether it's 18/6, restricted calories every other day, or whatever. NBC national news ran a story on fasting tonight: http://www.nbcnews.com/nightly-news/vid ... 1193795861

Have you tried nasal strips for your sleep apnea? Very inexpensive and painless, especially compared to sleep studies. Your wife can tell you if they work -- they work wonders for my spouse, altho he has denied needing them.

I've lost 25 pounds in two months, and my diet has been delicious, probably more tasty than before. I allow myself to "indulge" in more expensive groceries like fish, shrimp, grass fed beef, omega-3 eggs, cream, berries. And lots of greens! You will be teaching your kids how to eat, so there's that, too.

I had no symptoms of cognitive decline before made the dietary changes, and tested great on MMSE and other exams that I took online. But my mental clarity is sharper, and my sleep is profoundly improved.

And I agree that finding a physician who will guide you through this will be difficult. Keep reading -- find access to journals through a colleague or relative, if possible. This forum is very helpful in that regard, if you don't have a connection.

[Tincup]

Stavia put together a primer here: https://www.apoe4.info/forums/viewtopic.php?f=33&t=1418

[ApropoE4]

3) NO SUGAR.... at all
4) NO GRAINS... at all
5) NO CARBS - that means no pasta/bread/cookies/etc., I eat potato's if/when I need the additional carbs

And this is based on?