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

Post by jenwin »

TheresaB wrote: Wed Jun 07, 2023 7:33 am
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?

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.

I thank you so much. Yes, my mom's mom. I feel like its my destiny.
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Re: I am scared, confused, overwhelmed with information and motivated all at the same time!

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jenwin wrote: Wed Jun 07, 2023 7:41 pm 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.
Hi again,

This is confusing, isn't it! I'll answer your question about ApoE 4/4 vs ApoE4 first and then give you some real data from the CLARITY trial with about 1800 people taking either Lecanemab or a placebo.

ApoE 4 or ApoE4 (it can be written both ways) and refers to people who carry one or two copies of the ApoE 4 gene, sometimes called the ApoE4 allele
  • When articles say "people with ApoE4 have an increased risk of late-life Alzheimer's" or "people with ApoE4 should avoid high levels of saturated fats", they are referring to about 25 % of the population in the U.S. and Europe, with slightly different percentages in other areas of the world, whether or not they have one or two copies of ApoE4.
About 90% of that whole group are like you and your mom, with one copy of ApoE 4 and one copy of ApoE 3 and would be called ApoE3/4.
  • That's still about 22% of everyone in the U.S. and Europe and includes you and my three adult children. You and my kids have more of a risk than someone who has two copies of ApoE 3 (called ApoE3/3)--and decades to greatly reduce that risk with a healthy lifestyle.
Only about 2% (2 in every 100 people) in the U.S. carry two copies of ApoE4 and they are referred to as ApoE 4/4.
  • I am one of them and I am still healthy, with no cognitive or heart disease at age 71. So even with two copies, it is not my destiny or yours to get this disease. I might get Alzheimer's, or heart disease or colon cancer, since they all have occurred in my family, but I have avoided all of them for 71 years even with "high" risk. That tells me that how we live our lives is more important than our DNA.

Below is data from the CLARITY trial of lecanemab. Your mom's doctor is referring to this data when he says she would have less risk with ApoE 3/4. On the chart, ApoE3/4 is "heterozygotes". I circled some key figures in blue and orange for ApoE 3/4, and in red for ApoE 4/4 )"homozygotes".

ARIA-E stands for edema, or fluid seen on MRI scans; ARIA-H stands for micro-hemorrhages (1-5mm), macrohemorhrages (>1cm) or intracranial hemorrhages (what we think of as a stroke) seen on MRIs. Most of these are asymptomatic in both ApOE 3/4 and ApoE 4/4, which is why an MRI is done BEFORE starting on lecanemab and then a few times during the first 6 months or at any time when symptoms are either severe or mild but persistent for several days.

It's hard to see the numbers, but the risk of any kind of temporary brain swelling (ARIA-E) was about 2% for people on placebo, about 11% for people with ApoE3/4 and about 33% for people with ApoE 4/4. Less than 1 in 200 people (0.4%) with ApoE 3/4 had serious ARIA-E (which is treated with IV steroids), while four times as many people, but still only 2% of people with ApoE4/4 had serious ARIA-E. or brain fluid swelling.

Any time there is either a concern about serious effects before an MRI, or evidence of a mild ARIA-E or mild ARIA-H with symptoms, IV infusions are "paused" until the symptoms and signs resolve.

The risk of a serious brain bleed was about 1 in 170 (0.6%) of people with ApoE 3/4 on lecanemab and one in every 500 people who DIDN'T take the drug (on placebo). The risk for people with ApoE 4/4 was about 2% for a serious brain bleed.

That's why your mother's doctor says the risk would be significantly less for her with one copy of Apoe4. It's not no risk and she and you (or her Study Partner) need to discuss how they would monitor her, and how you would report any symptoms. My study site spent LOTS of time with me discussing just that; they welcome questions from family members.
ARIA rates reported for the Phase 3 (CLARITY AD).png
You know so much more already about how to stay healthy. Focus on what you love today, tomorrow and next year, and on enjoying the special times with your mom. She sounds like someone who raised a great adult. You get to write your own future with simple steps you take today.

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

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jenwin wrote: Wed Jun 07, 2023 7:44 pm I thank you so much. Yes, my mom's mom. I feel like its my destiny.
Your destiny is largely in your own hands. If you have inherited suboptimal mitochondria, there are things you can do to improve or at least reduce further damage.

Dave Asprey talks about his experience with poor mitochondria and how he overcame the resulting cognitive issues in his book, Head Strong: The Bulletproof Plan to Activate Untapped Brain Energy to Work Smarter and Think Faster-in Just Two Weeks


Dr Terry Wahls restored her health after being diagnosed with Multiple Sclerosis (a neurodegenerative disease) and being confined to a tilt recline wheelchair by concentrating on efforts to restore her mitochondrial health. You can listen to her inspiring story in this 32 minute video: Minding your mitochondria | Dr. Terry Wahls | TEDxIowaCity.

Dr Wahls also has participated in an ApoE4.info 28 minute podcast: Terry Wahls, MD: Heal Neurodegeneration w/ Paleo Principles which also comes with written show-notes.

Dr Wahls also wrote the book The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles

Dr Bredesen talks about mitochondria in preventing/reversing cognitive issues in his book The End of Alzheimer's: The First Program to Prevent and Reverse Cognitive Decline

We also have an ApoE4.info wiki explaining what mitochondria are and how to mind your mitochondria.
Mitochondria

One thing I forgot to mention about lecanemab/leqembi yesterday is that the clinical trials only lasted 18 months. Put this into perspective. Alzheimer’s develops over decades and progresses slowly. The long term effects of taking the lecanemab/leqembi are unknown. Despite positive documented results in cognition, the Phase 2 trial noted brain shrinkag. Brain shrinkage has been consistently associated with progression of Alzheimer’s disease/cognitive issues. Does this mean in the long term cognition will actually be worsened by the drug? This is as yet unknown.
-Theresa
ApoE 4/4
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Re: I am scared, confused, overwhelmed with information and motivated all at the same time!

Post by Shariross »

Hi Greg. I am also brand new here and have virtually the same path as you. I am 54 years old. Found out my 4/4 status from 23 and Me about 4 years ago but that info didn't hit home with me until about 2 weeks ago when getting to the chapter of Outlive where Dr. Attia says that he had to deliver the "devastating news" about 4/4 to a patient. Honestly, although I am upset with myself for not looking further into it when I got my 23 and me results, I think that the stress of this plus the pandemic would have been very difficult for me to handle. On the good side, I have never been much of a drinker, I am an athlete and in good shape and I have an ok diet. Never smoked. On the down side, I am a woman and my mother died last year with dementia (from a stroke likely caused by covid), both huge strikes against me. Right now, I am extremely overwhelmed and scared and trying to obtain as much info about prevention via diet as I can. I'm finding some conflicting info out there. I immediately cut out all sweets and added sugars and keeping carbs as low as possible, trying to focus on eating low GI foods and eating fish twice a week. Unfortunately, I don't feel like I'm getting enough calories. I have lost about 10 pounds in the last 2 weeks. Maybe not a bad thing. Anyway, I look forward to getting involved with this forum to see how others are handling their situations. Shari
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Re: I am scared, confused, overwhelmed with information and motivated all at the same time!

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Shariross wrote: Thu Jun 22, 2023 10:00 pm Hi Greg. I am also brand new here and have virtually the same path as you. I am 54 years old. Found out my 4/4 status from 23 and Me about 4 years ago but that info didn't hit home with me until about 2 weeks ago when getting to the chapter of Outlive where Dr. Attia says that he had to deliver the "devastating news" about 4/4 to a patient. Honestly, although I am upset with myself for not looking further into it when I got my 23 and me results, I think that the stress of this plus the pandemic would have been very difficult for me to handle. On the good side, I have never been much of a drinker, I am an athlete and in good shape and I have an ok diet. Never smoked. On the down side, I am a woman and my mother died last year with dementia (from a stroke likely caused by covid), both huge strikes against me. Right now, I am extremely overwhelmed and scared and trying to obtain as much info about prevention via diet as I can. I'm finding some conflicting info out there. I immediately cut out all sweets and added sugars and keeping carbs as low as possible, trying to focus on eating low GI foods and eating fish twice a week. Unfortunately, I don't feel like I'm getting enough calories. I have lost about 10 pounds in the last 2 weeks. Maybe not a bad thing. Anyway, I look forward to getting involved with this forum to see how others are handling their situations. Shari
Hello Shariross,

Welcome! I'm so glad you joined our site and dove right in with a post. ApoE4.info is a great place to find tons of information about prevention. As you've discovered, it can feel quite overwhelming. I find it most helpful to focus on one topic/issue/idea at a time, which helps reduce my overwhelmedness. And you've already made some very healthy lifestyle choices, giving you a great base for tweaking and adjusting to optimize your health.

Besides a marvelous resource of information, participating in the forums can be a source of comfort, too. You'll realize you're not alone; there are many on similar paths. We can learn from each other and support each other. Sometimes just saying something "out loud" in a post can help reduce the anxiety a bit.

As a Support Team Intern, I'd like to officially welcome you to the forum. I'll share some tools/resources you can use to explore the site, helping 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, you can check out Our Stories.

I'm so glad you joined and hope to run across you again in the forum. Please feel free to reach out anytime.

All the best,

Jane
-- Jane --
(daughter, granddaughter, and niece of people who lived with Alzheimer's)
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Re: I am scared, confused, overwhelmed with information and motivated all at the same time!

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jenwin wrote: Tue Jun 06, 2023 10:57 pm 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.
Lecanemab is likely to be approved by the FDA soon, this is not without controversy. If you want a better understanding of the apparent inconsistencies and weaknesses in the clinical data supporting Lecanemab's (leqembi) approval and the potential implications of the FDA's decision for patients, healthcare providers, payors, and the pharmaceutical industry, you might want to watch this video Alzheimer International Society- webinar - FDA's Upcoming Controversial Full Approval of Lecanemab. Set aside time, it's just over an hour and a half long.

Remember Lecanemab is not a cure, both the lecanemab group and the placebo group measured decline over the 18 months of the clinical trial, the lecanemab group just got a little less worse.
-Theresa
ApoE 4/4
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