New member - 4/4

[kristinmarie]

Hi everyone,

I just received my 23andme results and was shocked and devastated to learn I have two copies of APOE4. No one in my family has had AD, but they have all passed away young (both of my parents died this year in their 50s from strokes). I did notice my mother forget a few things before she passed away, and I'm wondering if she was beginning to have some cognitive decline.

I've been frantically browsing all the tips and haven't had much time to dig in, but was wondering if anyone could tell me whether the ketogenic diet is possible for a vegetarian?

Thank you for listening and any help you can provide. I just found out a couple of hours ago and can't stop crying, so apologies if this isn't very coherent. I have a one year old baby and I'm just so worried about what our future looks like now.

Thank you again.

[Chameleon]

Hi kristinmarie,

It can be a shock for people to learn their APOE4 status. I am so glad that you came here to this very supportive community.

However, even in the short time you have known you are already starting to take action, which is great. What I want you to know is that there is hope and you genes are not your destiny. Just because you have the gene does not mean it will express itself. You are still young and making preventative lifestyle changes is a key piece to all of this. So in a sense it is a good thing that you know because you can make the adjustments now that will help you later.

I would suggest that you buy Dr. Dale Bredesen's book - The End of Alzheimer's to get started. Also the Primer has lots of information that will be useful. And the Wiki can be used for specific searches.

Then to answer your question about the ketogenic diet - yes vegetarians can implement it. Finding the right proteins will be important. If you need help with that a nutritionist or a health coach can help you and give you extra support.

You are definitely not alone and I want to encourage you to stay plugged in here and ask as many questions as you can.

[NF52]

Hi everyone,

I just received my 23andme results and was shocked and devastated to learn I have two copies of APOE4. No one in my family has had AD, but they have all passed away young (both of my parents died this year in their 50s from strokes)... I just found out a couple of hours ago and can't stop crying, so apologies if this isn't very coherent. I have a one year old baby and I'm just so worried about what our future looks like now.

Welcome, kristinmarie,
I am so sorry that you've had the loss of both parents this year at such early ages, and now have been learned shocking news, with unclear risks. It's perfectly alright to respond to this by crying. Many people on this site have admitted that they barely got out of bed for 2 weeks. (Your baby probably won't let you do that.)

You don't have to apologize for your writing either; as a former English teacher and staff developer for writing instruction, I can confidently say that your ideas, sentence structure, vocabulary, word choice, organization and especially "voice" are moving and eloquent. That's no small feat on a day like today, and tells me you have lots of "cognitive reserve", meaning your brain has both good capacity, the benefit of a good education and the ability to put your thoughts into not only words but actions--like finding this site and jumping right in to ask for help. So here's one of many statistics: lots of studies indicate that "cognitive reserve" pushes off any decrease in skills for about 7 years, compared to "average" scores.

Your parent's history is similar to a 4/4 friend of mine. No one in her family lived long enough to have Alzheimer's or dementia either, all dying from strokes or sudden heart attacks in their 40's and 50's. Yet she is 67, healthy, active, with a fine mind and doing better at bridge and golf than she did a few years ago. And she finds time to entertain her many grandchildren (by herself!!) and to help out at charity events and to participate in a clinical trial. So what's different? She's had great early and consistent medical care for the family history of high cholesterol and high blood pressure, and she's stayed as a healthy weight and has a great attitude of enjoying every day. (And she only got 50% of the genes of each parent, as you did, so it's possible that she and you both actually had some healthy genes in the mix.) She doesn't follow a keto plan, but eats lots of Mediterranean-diet foods, and has tons of exercise.

My own grandmother died of a stroke at 45, as did her mother. Yet my mother and four sisters lived into their 80's and 90's. They did eventually experience some cognitive decline, some more than others, but that was on what I call the "Velveeta, white bread and casserole diet" of the 1950's and 60's. My dad died of cardiac arrest at 67, so at 66, with ApoE 4/4, I should be a mess, since I am not a super-athlete or svelte. Yet a coronary calcium scan shows my cardiac age as 39, with no plaques, and I too am healthy enough to be in a clinical study for ApoE 4/4 individuals.

So genes are not destiny, KristenMarie. Your parents may have had doctors who had no idea of the issues that were lurking in them. I didn't know my ApoE 4/4 status until age 62. And until very recently, many doctors didn't worry about systolic blood pressure in the 150 range, or screen for blockages in the carotid artery with a quick ultrasound scan.

When I was about your age (20's or 30's) I too had a one year old, and then two more babies. In spite of my family's history and being Apoe 4/4 (and being obese, sleep-deprived and job-stressed for many years in mid-life) I now have three wonderful grown children probably about your age, and two grandchildren. There is NO reason that you cannot plan on living to see your grandchildren (provided your child decides to help out in 25 years or so.)

And yes, you can follow a ketogenic diet as a vegetarian. Here's a link to a post from a wise member about how to be do both: Diet confusion and here is a quote from a post by "slacker" (who is anything but a slacker!)

We have members who stay in nutritional ketosis with some fish and mostly vegetables/plants. Their fat comes mostly from vegetable sources - olive oil, avocados, nuts. There are two that I know of that follow Dr Gundry's approach, and are interested in sharing their journey. We have a wiki on Dr Gundry's protocol if you are interested in reading more about a mostly vegetarian approach to nutritional ketosis.

We also have a wonder Primerwritten by a MD member that is a great starting place to learn about ways to help overcome our ApoE4 genetics. There is a section specifically on how to improve insulin resistance (IR). Many of us try to get our A1C as close to 5% as possible, but there are markers other than A1C that are important to check.

And here's a quick and easy guide to navigating, searching, quoting others so the know you've responded, and following topics. How to get the most out of the ApoE4.info website

Give yourself permission to go slowly, and to take time to revel in the magic of your baby. Nothing you do in the next few weeks or months is going to cause you to lose ground (unless of course you take up professional wrestling). I know, as a parent, how deeply your parents would wish for you to feel that your future is going to bring you happiness. Please hold onto that while you navigate this new, unexpected journey for a while. And reach out whenever you need help.

Hugs from another 4/4.

[kristinmarie]

Give yourself permission to go slowly, and to take time to revel in the magic of your baby. Nothing you do in the next few weeks or months is going to cause you to lose ground (unless of course you take up professional wrestling). I know, as a parent, how deeply your parents would wish for you to feel that your future is going to bring you happiness. Please hold onto that while you navigate this new, unexpected journey for a while. And reach out whenever you need help.

Hugs from another 4/4.

Thank you so much for your very thoughtful and helpful reply. I have reread it several times as I try to climb out of the dark hole I find myself in.

I can come to terms with the risk if I focus on the fact that I have a 40% chance of NOT having AD by the time I'm 85. But I tailspin whenever I stumble upon an article that quotes the study that says there is a 91% chance of a lifetime risk and onset around 68/69 (can't remember which one). Is that study generally considered accurate?

I just keep sobbing whenever I look at my baby. I had such a hard time conceiving him, and am now so worried that I am going to lose precious years with him. Or eventually not recognize him. Or ruin his life with a long, painful battle.

I'm sorry to dump all of this in the thread. I'm just still having a really hard time coming to grips with all of this. Thank you again for all of your support and kind words.

[NF52]

I can come to terms with the risk if I focus on the fact that I have a 40% chance of NOT having AD by the time I'm 85. But I tailspin whenever I stumble upon an article that quotes the study that says there is a 91% chance of a lifetime risk and onset around 68/69 (can't remember which one). Is that study generally considered accurate?...

Dear kristinmarie,

If something looks too good to be true, it probably isn't true; it something looks too bad to be true, it almost certainly isn't true. Those grim statistics are from 1993, and a group of 42 families in N. Carolina. No offense to N. Carolina (my oldest son lives in the state) but I'm not living my life based on 1993 science on anything!

If you Google "ApoE 4/4 and Alzheimer's diagnosis age 68", you'll get an article that was published in 2013 with a chart and a statement that the average age of AD diagnosis for ApoE 4/4 is 68. But that statement, in 2013, was based on a flawed, early report from 1993: 20 years before the article was written!
In 1993 DNA analysis was slow and expensive, and ApoE 4 knowledge depended on using people who showed up at university hospitals. That 2013 article used NO NEW RESEARCH, merely re-stated a 1993 study from Duke University of 42 families with late-onset Alzheimer's with ApoE 4/4. From that small, regional sample, with no description of the process for a diagnosis (remember, no PET scans were around then; they may have had a 5 minute test and observation) they announced that it is a fact that people with ApoE 4/4 will get AD by age 68.
Did they do a population-based study of people in the Raleigh/Durham area to see whether there were healthy ApoE 4/4 people living into their 70's and 80's: NO!
Did they consider that this "convenience sample" of people who showed up at Duke for testing would be like going to a wedding planner and observing that the average age of 42 couples was 32, therefore all people will be married by age 32? No!
Did they consider that people WITH a diagnosis of AD at age 68 might be VERY DIFFERENT than people without a diagnosis of AD at age 68? NO!
Here are two better sources: the first is a meta-analysis of four of long-term cohorts (3 of them population-based); the second is a study of whether amyloid causes memory loss or ApoE causes memory loss even without amyloid. Both use modern statistical modeling:
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2). These values are consistent with our findings, but use round numbers for intelligibility, and broader ranges to reflect statistical and other sources of uncertainty. The regression models are insufficiently precise for “personalized medicine” incidence estimates based on sex, education, or other factors, but they do allow for qualitative adjustments to overall stratified risk estimates.

And this is from the February 2018 issues of ALZForum; the bottom line is in the title: No Amyloid, No Memory Problem—Even with ApoE4?

All [447 cognitively normal] participants took episodic memory tests every 18 months for six years, and the researchers combined results from the California Verbal Learning Test, the Logical Memory delayed recall test, and the Rey Complex Figure Test into a composite score.

Amyloid-positives were the only ones with any episodic memory loss. Their decline began, on average, around age 76. If a participant also carried an ApoE4 allele, his or her decline started nearly a decade earlier—at 65. By age 85, amyloid-positive ApoE4 carriers had fallen 1.5 standard deviation units below amyloid-negative noncarriers on the composite, characteristic of someone who has trouble recalling recently acquired memories and is approaching mild cognitive impairment, said Lim. Amyloid-positive noncarriers had fallen by 0.7 SDs at that age. By contrast, episodic memory held steady in people without plaques, regardless of their ApoE4 status.The data confirm what shorter studies hinted at, namely that ApoE4 on its own does not drive risk of memory loss in cognitively healthy people (Mormino et al., 2014). "The unique and valuable contribution of the AIBL study is the long clinical follow-up of participants, which strengthens confidence in conclusions about the relationships among amyloid, ApoE, and cognitive decline,” noted Clifford Jack from the Mayo Clinic in Rochester, Minnesota. He had suspected as much after analyzing data from longitudinal studies at the Mayo Clinic. “The main mechanism by which ApoE4 negatively affects cognition is mediated through amyloidosis,” he wrote to Alzforum.

So consider yourself as someone witnessing the first launch of John Glenn into space and now try to imagine how much more will be known about this "space" (Apoe 4/4) in the next 5, 10 15 years. You have every right to expect to live to see your long-anticipated child become a pain-in-the-butt teen and a terrific adult, with wonderful dreams of his or her own.

[Indywoman]

Kristinmarie, I hope you can feel the many hands and hearts reaching out to you, including mine. This community of curious, worried, hopeful, and generous souls saved me in the first four months after I found out my 4/4 status ten months ago in late January. So many people here offer emotional support, as well as thoughtful scientific advice, and others will be willing to share with you in private messages if you reach out that way as well. In particular, I would like to thank NF52 and Slacker for the tremendous emotional support they have given, as well as practical advice when I was unsure of a direction or just needed encouragement. So, reach out. There are so many of us who deeply understand what you are going through.

Like you and most everyone else on this site, I cried...a LOT, in those first months, compounded by my husband’s cancer diagnosis and subsequent successful surgery, but then spring rolled around and something just snapped and I began to feel much better. I don't know where you live kristinmarie, but I think finding out in the winter can be particularly hard, but also more challenging now with the upcoming holidays where everything is supposed to be happy and jolly. Think about it! You have also lost two parents, and birthed a brand-new life in the last couple of years, three events that would cause anyone stress and fluctuating emotions. Right now, wrap your arms around yourself and give yourself a big hug, for what you have been through, and are going through, but do know that this raw pain will ease considerably with time.


I also want to add on to what NF52 gave you regarding a ketogenic diet. I am 64, have been vegetarian for over two decades, and for the last several years have been vegan except for eating humanely raised eggs that I buy from a former student. I fast 16 hours, five times a week, and eat lots of avocados, spinach, kale, broccoli, nuts, and unlike others who follow Dr. Gundry, eat three or four kinds of beans, millet, and non-dairy nut cheeses and flax seed as well as almond milk. It does take me longer to get into ketosis, and my level is almost always in the low end of the medium range. I’m fine with that and feel plenty of energy.

Go hug Baby, and you and your baby have LOTS of time together in the months and years ahead. Give yourself permission to just be sad sometimes too. That’s okay, and you will feel better down the road. As my poetic Iranian translator said to me at one point, “Winter does not last in the garden forever.”

[kristinmarie]

So consider yourself as someone witnessing the first launch of John Glenn into space and now try to imagine how much more will be known about this "space" (Apoe 4/4) in the next 5, 10 15 years. You have every right to expect to live to see your long-anticipated child become a pain-in-the-butt teen and a terrific adult, with wonderful dreams of his or her own.

Thank you so much, NF52. I will forever be grateful for the information you have provided in this post, as well as the many, many others I have read over the past few days. I don't know how I would have made it through this news without the reassuring words (and studies!) you have given. Thank you, again. So, so much.

[kristinmarie]

Kristinmarie, I hope you can feel the many hands and hearts reaching out to you, including mine.

I also want to add on to what NF52 gave you regarding a ketogenic diet. I am 64, have been vegetarian for over two decades, and for the last several years have been vegan except for eating humanely raised eggs that I buy from a former student. I fast 16 hours, five times a week, and eat lots of avocados, spinach, kale, broccoli, nuts, and unlike others who follow Dr. Gundry, eat three or four kinds of beans, millet, and non-dairy nut cheeses and flax seed as well as almond milk. It does take me longer to get into ketosis, and my level is almost always in the low end of the medium range. I’m fine with that and feel plenty of energy.

Go hug Baby, and you and your baby have LOTS of time together in the months and years ahead. Give yourself permission to just be sad sometimes too. That’s okay, and you will feel better down the road. As my poetic Iranian translator said to me at one point, “Winter does not last in the garden forever.”

Thank you so much, Indywoman. It's been a whirlwind, but the posts in this forum have helped quite a bit. I really appreciate your kind words, and hope that I can also be so positive in the coming months. I also hope that your husband is doing well -- I can't imagine going through all of these things at one time. You are one strong woman.

I haven't gotten too far into the diet info yet, but have already noticed the conflicting info and am feeling a bit bogged down by it. Thank you for sharing your experience. I don't know how I'd get any protein without beans, and get worried whenever I see something saying not to eat them.

Thank you again for your kind words, advice, and support.

[kristinmarie]

I would suggest that you buy Dr. Dale Bredesen's book - The End of Alzheimer's to get started. Also the Primer has lots of information that will be useful. And the Wiki can be used for specific searches.

Then to answer your question about the ketogenic diet - yes vegetarians can implement it. Finding the right proteins will be important. If you need help with that a nutritionist or a health coach can help you and give you extra support.

You are definitely not alone and I want to encourage you to stay plugged in here and ask as many questions as you can.

Thank you, Chameleon! I have started Dr. Bredesen's book, slowly but surely. It's all still a bit overwhelming but I hope to be caught up very soon, and on my way to preventing AD in any way I can.

[Torimintz]

Hi all.
I am somewhat new here still. My mom is 79 with 4/4 and started having memory issues at 70. I also have 4/4 and am 47 years old.

So, the weird thing is, my mom is seemingly healthy in every way... exercises, loves veggies and fruits... but also fried food and junk food, and desserts... she had a minor chronic sinus issues and IBS issue forever.... other than that she was totally healthy.

I am thinking that her gut issues that she has always had and never addressed have a lot to do with her succumbing to this.

I AM ON THE KETO / 16:8 fasting / Perlmutter and Gundry lifestyle. I already feel tons better. I have the true belief that I will not succumb to this, at least not til my late 80s...

My mom is 79 now and has an amazing healthy body and personality... but can't remember her childhood or yesterday... so weird... maybe had strokes as well??? Her alzheimer's was odd in that she would forget huge patches of life from 1970s to 1980s. So weird. I will post my interesting story of my mom's situation and my journey on a separate thread. I am soooooo happy to have other people who are 4/4 and are actively doing measures to reverse this BEFORE it hits. THANK YOU ALL