I am scared, confused, overwhelmed with information and motivated all at the same time!

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
GregG
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I am scared, confused, overwhelmed with information and motivated all at the same time!

Post by GregG »

First, I cannot express enough gratitude that this site exists. My story is a little unique. I learned that I was e4 e4 several years back through the 23andme testing. I honestly didn’t get how serious it was. Fast forward to today. I am 51 and really focused on my mental and physical health. I gave up drinking over a year ago, I intermittent fast five days a week, I take a statin and BP medicine because I have a kidney issue (that is all but healed), I exercise, I sleep well, I have been taking fish oil for years (along with other supplements), and I am thin. I even do a cold plunge each morning in 48 degree water. All good, right?! I am enjoying my quiet hour reading Peter Attia’s book on Longevity (which I highly recommend) and I get to the part about a patient that is e4 e4. It is the only part of the entire book where he is alarmed. Curious, I go onto my 23andme page (I hadn’t looked at it in years) and there it is. I am now in the same boat as the patient Peter is so concerned about. Then I start researching on the internet. The data is all over the place. Some studies that are reported on reputable academic sites show that I am 90 percent likely to get Alzheimer’s by the age of 75. Some show much less. It is a total mess out there. I am so grateful for this site and community. A place where I can learn what I need to know. What I can do. But also where I can express how scared I am to people who get it. Who knows how it feels.
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Re: I am scared, confused, overwhelmed with information and motivated all at the same time!

Post by NF52 »

GregG wrote: Sun May 28, 2023 8:00 am ...I learned that I was e4 e4 several years back through the 23andme testing. I honestly didn’t get how serious it was. Fast forward to today. I am 51 and really focused on my mental and physical health.... I am now in the same boat as the patient Peter is so concerned about. Then I start researching on the internet. The data is all over the place. Some studies that are reported on reputable academic sites show that I am 90 percent likely to get Alzheimer’s by the age of 75. Some show much less. It is a total mess out there. I am so grateful for this site and community. A place where I can learn what I need to know. What I can do. But also where I can express how scared I am to people who get it. Who knows how it feels.
Welcome, Greg !

I do get it and I do know at least some of how you feel. I discovered I had two copies of ApoE 4 from 23 & me when I was 10 years older than you, and since they didn't give any "trigger warnings" back then, I next saw a link that said the median age for diagnosis with dementia was 68.
I turned 62 two months later and immediately did what you're doing--looking for the one true answer. And I had far less history of great health habits than you in my early 50’s.

Ten years later, at age 71, I can confidently say that my health is better, my blood labs are fine [I also take a statin, for high LDL-P and high Lp(a)] and my cognitive tests are the same as in 2017, when I first started enrolling in clinical trials. (I still draw like a 7 year old, but no one cares about that on testing!)

I have been a Consumer. Reviewer for Peer-Reviewed Alzheimer's Research for 6 years, which lets me read and write critiques on the possible impact of innovative new research proposals and hear from brilliant Ph.Ds about latest approaches for prevention, assessments diagnosis and treatments. Apoe4 is a variable under study in almost every type of research being done.

I also have been able to virtually attend several conferences on research and clinical trials, which makes me believe that we are on the cusp of multiple breakthroughs . Look up some of our posts on lecanemab, and ALZ-801 using the SEARCH function under your user name and you’ll see some examples of recent news specifically for APOE 4/4.

The ability to measure amyloid in a simple blood test, and tau are re-defining “Alzheimer’s” from a generic term like “Xerox”. We now know from studies of donated brains that 30% of people with a diagnosis of Alzheimer’s years ago didn’t have the disease! They had inflammation from toxins, or vascular dementia from heart disease, or damage from brain injuries or Lewy Body dementia.

The risks from APOE 4/4 occurs so slowly that we have numerous upstream interventions, from lifestyle to blood pressure and cholesterol control, to prevention of brain injury to treatment of depression and sleep apnea, to anti-amyloid and anti-tau drugs in development.

Bottom line: Don't base your prediction of your future on anything written before 2017! Most early predictions couldn't use population based studies, because 23& me didn't exist and no one was studying healthy people with ApoE 4. So a prediction of "age 75 for diagnosis of dementia" was based on who showed up with dementia at memory clinics. In the last 20 years, the people who got diagnosed skewed younger because they hsd puzzling symptoms, If the average person has their first heart attack at age 57 (I have no idea what the real number is), cardiologists would not say that you will have a heart attack at age 57!

Population studies, like the famous Framingham Heart Study, suggest that up to 60% of people with ApoE 4/4 in the generation before you, were never diagnosed with dementia to the age of 85 (the average lifespan for that time).

Peter Attia, from what I've listened (haven't yet read his book) is concerned about a few main things with ApoE 4: severe head injuries or repetitive concussions, and heart disease (coronary artery, aortic stenosis) and diabetes. I don’t think he views it as a 75 year limit on us.

I have no doubt that with your healthy lifestyle, you will be telling future generations just how to make ApoE 4 work out for a long, healthy life!

Keep reading and posting, my genetic "cousin"!

Nancy
4/4 and still an optimist!
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Re: I am scared, confused, overwhelmed with information and motivated all at the same time!

Post by abalboa »

GregG wrote: Sun May 28, 2023 8:00 am First, I cannot express enough gratitude that this site exists. My story is a little unique. I learned that I was e4 e4 several years back through the 23andme testing. I honestly didn’t get how serious it was. Fast forward to today. I am 51 and really focused on my mental and physical health. I gave up drinking over a year ago, I intermittent fast five days a week, I take a statin and BP medicine because I have a kidney issue (that is all but healed), I exercise, I sleep well, I have been taking fish oil for years (along with other supplements), and I am thin. I even do a cold plunge each morning in 48 degree water. All good, right?! I am enjoying my quiet hour reading Peter Attia’s book on Longevity (which I highly recommend) and I get to the part about a patient that is e4 e4. It is the only part of the entire book where he is alarmed. Curious, I go onto my 23andme page (I hadn’t looked at it in years) and there it is. I am now in the same boat as the patient Peter is so concerned about. Then I start researching on the internet. The data is all over the place. Some studies that are reported on reputable academic sites show that I am 90 percent likely to get Alzheimer’s by the age of 75. Some show much less. It is a total mess out there. I am so grateful for this site and community. A place where I can learn what I need to know. What I can do. But also where I can express how scared I am to people who get it. Who knows how it feels.
Welcome GregG,
Thank you for joining our site and posting in the forum. I am also glad this site exists and glad that you are here and sharing your story! Having supportive (and knowledgeable) community is such a blessing in understanding and addressing living with APOE4. Nancy already shared so much great information that I won't duplicate it but you are certainly so far ahead in the really great lifestyle choices you are making to support your health and decrease the risks of actually developing symptoms. There are many, many people that are living fully cognitively healthy lives with 4/4. I admire your curiosity in researching the information and your bravery in joining here and sharing your story.

As a Support Team Intern, I can share several tools & resources to help you get the most out of your experience if you would like to explore the site in more detail. The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response.

If you are interested in learning more about other members check out Our Stories.

Again, I am so glad you joined our forum. I look forward to hearing from you in the future. Please feel free to reach out anytime.

Warmly,
Angie
Certified Functional Medicine Health Coach-FMCA
RECODE 2.0 Certified Health Coach
APOE4 aware health coach
MoCA Certification
BS Human Nutrition
GregG
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Re: I am scared, confused, overwhelmed with information and motivated all at the same time!

Post by GregG »

Thank you for the kind and informative responses. I again want to express my gratitude for this site and the fact that you would all spend the time to reply. I feel very welcome in my new community!
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Re: I am scared, confused, overwhelmed with information and motivated all at the same time!

Post by abalboa »

GregG wrote: Mon May 29, 2023 9:28 pm Thank you for the kind and informative responses. I again want to express my gratitude for this site and the fact that you would all spend the time to reply. I feel very welcome in my new community!
So glad to hear that! In my personal experience- just being able to share with others lessens the anxiety. Please do share any further updates and as you've seen - there is a wealth of knowledge and understanding available here. Hope you had a great weekend...
Angie
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RECODE 2.0 Certified Health Coach
APOE4 aware health coach
MoCA Certification
BS Human Nutrition
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Re: I am scared, confused, overwhelmed with information and motivated all at the same time!

Post by jenwin »

Hi Greg.

Likewise on all of it. I have one copy detected of APOE4. I found out through 23 and Me. My grandma had alzheimers. I started keto 5 years ago and have upped my exercise. My mom started having problems around that time, but was officially diagnosed 3 years ago. Now they want her to do Lecanemab. I am so excited that there may be a cure in my future, but I am so scared for my mom. I can't show her my fear, I am so optimistic, but am so afraid of side effects. The dr says as long as she has one copy instead of two and is closely monitored, he feels it is a good plan for her. What does APOE4/4 mean? Is that what my mom and I have or is the fact we only have one variant detected, better?

Nice to share with people who get it.
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Re: I am scared, confused, overwhelmed with information and motivated all at the same time!

Post by NF52 »

jenwin wrote: Tue Jun 06, 2023 10:57 pm Hi Greg.

Likewise on all of it. I have one copy detected of APOE4. I found out through 23 and Me. My grandma had alzheimers. I started keto 5 years ago and have upped my exercise. My mom started having problems around that time, but was officially diagnosed 3 years ago. Now they want her to do Lecanemab. I am so excited that there may be a cure in my future, but I am so scared for my mom. I can't show her my fear, I am so optimistic, but am so afraid of side effects. The dr says as long as she has one copy instead of two and is closely monitored, he feels it is a good plan for her. What does APOE4/4 mean? Is that what my mom and I have or is the fact we only have one variant detected, better?

Nice to share with people who get it.
Welcome, jenwin!

Your mom is a lucky woman to have you in her life, sharing your hope and love and seeking information about lecanemab (Lekembi™). Your mom and I may be in the same generation, since I am 71 and have three wonderful adult children with ApoE 3/4 who, like you, have upped their exercise and eat healthy diets.

To answer your question about ApoE 4/4, that's a shorthand way of saying someone has two copies of ApoE 4. I am ApoE 4/4, which means I inherited one ApoE 4 gene (or "allele") from each parent. ApoE 4 is a "dose-dependent risk", meaning two copies is much more than two times the effect. (One copy of a gene for red hair gave my grandnephew light brown hair; two copies gave his brother a great head of red hair.)

People with ApoE 3/4 in MY generation have about a 15-20% risk to the age of 85 of a diagnosis of mild cognitive impairment or dementia. Your generation, with better info and lifestyles, is driving that down every day. People wth ApoE 4/4 in their 60's and 70's now may have a lifetime risk of about 50%, but we are learning more every day about how to lower that.
By the way, when you think about your own risk, don't just look at your mom and grandmother, look also at your dad and his parents. You and your mom share only 50% genes; and your grandmother and you only 25% (at most, since you could be more like you maternal grandfather.)

Your mother's eligibility for Lecanemab is based on the likelihood she has amyloid plaques in her brain, one of the two hallmark "biomarkers" of an Alzheimer's diagnosis. Her doctor's may have given her a blood test called PreCivityAD that is about 90% accurate at predicting whether someone has Amyloid plaques, if they also have cognitive impairment. They would likely schedule her for a Amyloid PET scan before starting lecanamab to confirm that. [PET scans are quiet and painless other than a quick IV infusion.] They would also schedule an MRI, to be sure she doesn't have any history of changes in her brain's blood vessels that would make this drug more risky. {MRIs are not so quiet, but are only about 20-30 minutes, usually.]

She is in the 'mild" stage of the disease, which is when lecanemab was used on clinical trials leading to its FDA accelerated approval in January 2023. Since it seems her doctor already knows from a blood test that she is ApoE 3/4, they can be more confident that she is likely to do well, since only people with ApoE 4/4 seem to be at highest risk of blood vessel-related severe side effects. Most of the commonly seen side effects are temporary (headache, nausea, fatigue) and some are seen only on MRIs: mild, temporary fluid [ARIA-E for "edema"] and ARIA-H for micro-hemorrhages, less than 5mm in size [not strokes]. That's why they will closely monitor her both with regular MRIs in the first six months and by talking to her and your or her study partner every two weeks when she has an IV infusion. They may wait to begin until July, when the FDA is likely to give "full approval" and Medicare has stated they will then cover the drug.

I have been in the AHEAD study of Lecanemab for people with amyloid plaques who have normal cognition, but are at increased risk of Alzheimer's dementia in the future. After 18 months, although I don't know if I am getting the drug, I am confident that I am under great care by my Study Site. I have had some mild side effects (mild fatigue, mild vertigo, treated with meclizine, mild nausea) that only occurred once in a while in the first 6 months. But each person and their care partners have to make the decision for this medication with the advice and support of their doctors and with their own comfort level.

I wish you both well in this journey, and hope you share more of your story and hers here.

Nancy
4/4 and still an optimist!
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Re: I am scared, confused, overwhelmed with information and motivated all at the same time!

Post by TheresaB »

jenwin wrote: Tue Jun 06, 2023 10:57 pm What does APOE4/4 mean? Is that what my mom and I have or is the fact we only have one variant detected, better?
Having one variant is better than two, but is not a get "out of jail free card".

This page ApoE4 introduction as well as our ApoE4.info wiki intro ApoE4.info Wiki Introduction explains what APOE is, the 3 variants called alleles, a brief history, its distribution, and what it effects.

Perhaps the best thing to know about holding one or two ApoE4 alleles is that it is not a deterministic gene. Alzheimer’s is the best known manifestation of ApoE4, but holding the allele doesn’t mean Alzheimer’s is a sure thing, far from it.

Recent research is finding out how other genes can influence the ApoE4 allele, both for the good (protective) and as a negative influence.

Environmental factors determine how genes are expressed (epigenetics). Lifestyle factors that we control (diet, activity level, stress, sleep) are major epigenetic influencers.

There are no drugs that cure Alzheimer’s. Lecanemab/leqembi only slows down the progression and it isn't effective for everyone. It addresses the amyloid, but not what is causing the amyloid to begin with. Trial results noted a 27% slower decline which was a less than half a point improvement on a 18 point scale based on subjective measure. Results were also inconsistent. It works better in those over 65, and better in men with no significant effect in women, it also showed no effect on homozygous ApoE4 carriers (ApoE 4/4s).

If she is chooses to take Lecanemab/Leqembi, do ensure your mother is monitored very carefully. Among the other conditions besides Alzheimer’s, ApoE4s are more susceptible to brain arterial disorders such as cerebral atherosclerosis, small vessel disease, and cerebral amyloid angiopathy. All three disorders can lead to bleeding in the brain. About 12.6 % of patients (full trial population – all genotypes) experienced brain swelling and About 17% of the leqembi group (full trial population – all genotypes) experienced brain bleeds, compared with 9% in the placebo group.

An alternative consideration you may be interested in is the Bredesen Protocol https://www.apollohealthco.com/ also discussed in our ApoE4.info wiki https://wiki.apoe4.info/wiki/Bredesen_Protocol and in the book The End of Alzheimer's Program. The protocol has been shown to reverse cognitive decline, especially if the disease is not far progressed.

Was your grandmother your mother's mother? A strong maternal history of Alzheimer's could indicate suboptimal mitochondria as mitochondrial DNA is inherited solely from the mother. Among other things, the Bredesen Protocol addresses mitochondrial function.

I can't tell you what is best for your mother but I do wish the best for her and to you.
-Theresa
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Re: I am scared, confused, overwhelmed with information and motivated all at the same time!

Post by NataliaReyn »

jenwin wrote: Tue Jun 06, 2023 10:57 pm Hi Greg.

Likewise on all of it. I have one copy detected of APOE4. I found out through 23 and Me. My grandma had alzheimers. I started keto 5 years ago and have upped my exercise. My mom started having problems around that time, but was officially diagnosed 3 years ago. Now they want her to do Lecanemab. I am so excited that there may be a cure in my future, but I am so scared for my mom. I can't show her my fear, I am so optimistic, but am so afraid of side effects. The dr says as long as she has one copy instead of two and is closely monitored, he feels it is a good plan for her. What does APOE4/4 mean? Is that what my mom and I have or is the fact we only have one variant detected, better?

Nice to share with people who get it.
Hello, jenwin!

Welcome to our community here and thank you so much for sharing your story with us!

As a Support Team Intern, if you would like to explore the site in more detail, I can share several tools/resources to help you get the most out of your experience. The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response.

If you are interested in learning more about other members check out Our Stories.

Also, to help answer your question, there are a couple of resources I can share.
The first is the FDA's press release from January, FDA Grants Accelerated Approval for Alzheimer's Disease Treatment .
The second is a concise, informational overview by a prominent AD researcher at Yale. (His views are included, but the information about the drug is accurate about risks and benefits from the studies.) Lecanemab, the New Alzheimer’s Treatment: 3 Things To Know .

I am sure more of our members will be able to contribute to this discussion as well.
Again, thank you so much for joining us and please know we are all here for you!

Warmly,

Natalia
Functional Medicine Certified Health Coach
Bredesen Protocol Health Coach
jenwin
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Re: I am scared, confused, overwhelmed with information and motivated all at the same time!

Post by jenwin »

Thank you so much. I dove deep last night. Can you tell me if APOE4/4 is the same as just APOE4? I see both everywhere. I will definitely read those links (bedtime reading!), but have you seen anything on Lecanemab for people with one variant vs 2? The dr said with 2 copies she is not a good candidate, but with one she should be fine.
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