Announcing a Personalized Precision Medicine Clinical Trial to Reverse Dementia

NF52
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Re: Announcing a Personalized Precision Medicine Clinical Trial to Reverse Dementia

Post by NF52 »

Computer15 wrote: Fri Nov 24, 2023 5:45 pm Where can I get testing done privately?
Tincup wrote: Fri Nov 24, 2023 5:53 pm For blood tests, there is a list of companies where you can order labs from Quest and Labcorp. New Century is usually the cheapest, but not always. They only work with Quest. There are a couple of states that don't allow you order through these companies. I don't know all of them, but New York comes to mind as one. I've not investigated cognitive testing, but I know others here have. For imaging, you'd need to get a script from a medic.
Hi Computer15!

You've asked a lot of great questions, and that alone is a great strength in planning for a long and healthy life. It's helpful to remember that you only have 50% of your mom's genes overall, and that you are more than 30 years younger, so have decades to benefit from an amazing transformation in our understanding of how to protect out brains, hearts and overall quality of life.

I'm just a year younger than your mother and I also have two copies of ApoE, but I'm still active in many intellectual and physical pursuits . My dad died of cardiac arrest at age 67, yet neither I nor my three siblings ages 70-74 have any signs of heart disease. Probably lots of reasons why, including understanding how to avoid Type 2 diabetes, reduce LDL cholesterol, keep exercising, avoid obesity and manage stress. Your mother's early life experiences, her options for education, work experiences, health care, social supports, enjoyable exercise, and knowledge of healthy fats vs processed foods may all have been very different than yours.

I hope she is making a safe and comfortable adjustment to her new memory care, where staff is usually well-trained on how to support people in still enjoying each day, including reminiscing through music, stories, and routines that offer comfort.

It sounds like you might have posted on this topic because you're potentially interested in the trial that Julie G. referenced. Here's a link to info on it in ClinicalTrials.gov, a site maintained by the National Institutes on Health:
Precision Medicine Approach for Early Dementia & Mild Cognitive Impairment (EVANTHEA)

Unfortunately you're younger than the age criteria for the trial, which is 45-76. But the good news is that it's very unlikely you would qualify as having
"Cognitive impairment or early-stage dementia as demonstrated by combination of AQ-21 score >4 and either: MoCA 18-26, inclusive, or greater than or equal 2 scores in the bottom 50th percentile for NCI or Executive Function, Verbal, Visual, or Composite sub-tests."
In laypeople's terms, a MOCA score of 18-26 would likely indicate someone with significant impairment in several areas, and possibly no longer able to perform at previous levels in work or possibly volunteer activities. So that trial would not be appropriate for you.

As far as your question about trials disclosing someone's ApoE 4 status, I am in a clinical trial of a drug called lecanemab, but that information is not shared with my long-term insurance company, nor my health insurance provider. They cannot share it with anyone who does not have a need to see it. The lower-age criteria for my AHEAD "prevention" trials is 55, so you are also too young for the kind of amyloid-reducing drug trial.

It's VERY likely that in the next 15 years, before you would be eligible, our knowledge about how to personalize diet, exercise, mental and physical health will all be much better than they are today--which is already light years better than your mother and I knew about until very recently. It's also likely that improvements in safety, effectiveness of delivery of r drugs for prevention of Alzheimer's will be available for people with Apoe 4/4 who are at a higher risk.

If you're asking about testing to know whether you have an elevated level of amyloid in your brain, which is one of the two "biomarkers", along with tau, associated with higher risk--but not certainty--of Alzheimer', the answer would be that you're too young for that to be even remotely likely. If your mom started showing symptoms of cognitive or behavioral changes within the last 5 years or so, around age 67, she probably would not have had a "positive" test until about age 58 or 60. And it's possible she has some issues with her brain's blood vessels, which could have lowered the age of her symptom onset, especially if she had high blood pressure or a history of heart disease. The test from Quest that Tincup mentioned has only a 70% accuracy rate and has never been used in a well-designed clinical trial. I have elevated amyloid myself (and am doing just fine) and I wouldn't pay to have their test.
The PrecivityAD test in highly accurate, but right now is only used by doctors to confirm or rule out a diagnosis of Alzheimer's in someone with typical significant changes in memory or daily living skills. You would be very unlikely to meet that criteria.

If you're asking instead what kinds of blood tests you could get to know where to start, you might want to use the Biomarkers section of the Primer, which was written by a practicing family physician with two copies of ApoE 4 who has recovered from two serious brain injuries and is in her 60's. I used her list to pick things to check using Lab Corp, which has a walk-in lab near me and gives a report by email usually within a day or two, showing your results, what the normal range is for B-12, Vitamin D, glucose, LDL, etc. . If you have a primary care provider and health insurance, they would likely be able to order several of these just on the basis of "I'm 41 and want to be proactive with my health and know what my cholesterol, Vitamin D, Vitamin B12, are, along with any typical annual blood work. You can get a fairly cheap Homocysteine A1C test at any Walgreens or CVS.

If you look at the Strategies in Stavia's primer, she encourages people to look at the low-hanging fruit when deciding what to focus on, rather than trying to completely re-do their lives. It would be very understandable if you were feeling pretty overwhelmed by your mother's changes and need for more support and your own knowledge of your Apoe 4/4. I hope you have someone to share that with who will support you. This forum will definitely support you!

If you're looking for a lower-cost way to begin to chart a path with all this new knowledge, it can sometimes be helpful to work with a health coach who is familiar with Apoe 4/4, who doesn't tell you what to do, but helps you to figure out what goals you want to work on--which might include stress reduction and caring for yourself now that your mom is in a safe place. You can see a list of such people on our Apoe4-Aware Health Coaches.

Anyone who has a user name with the word "computer" in it has a whole brain full of advanced neural networks. So trust in those to keep you strong, and enjoy finding out more here, in a safe place for you.

Nancy
4/4 and still an optimist!
Computer15
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Re: Announcing a Personalized Precision Medicine Clinical Trial to Reverse Dementia

Post by Computer15 »

I just finished his first book it’s a lot to take in and trying to navigate how to follow it without spending thousands through one of his doctors. I took the test on his website and didn’t score very well so the website recommended recode based on my score. Thank you for all the info I was not aware of his second book, I will read that one as well.
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Re: Announcing a Personalized Precision Medicine Clinical Trial to Reverse Dementia

Post by Computer15 »

Hi Nancy

Thank you so much for your post it’s like a breath of fresh air. I am very sensitive right now bc of all this with my mom and the pure hell she is going through and how I have to fight like hell for her bc her care team as given up on her and I just found out about having the two genes myself, which Dr Sabbaugh himself told me that my mom was predestined to get this based on those genes and she just went downhill so quickly.
However I am very different than my mom and have for the last 10 or more years eaten healthy and have exercises and I am very social. I have 4 little kids and work full time so my time is extremely limited and so I really just need someone to help me get started with the tests recommended in Brenden’s book and what supplements to take and what I should be eating. I am very disciplined especially when given a plan. I will check out your health coaches. Please let me know of any other helpful information you seem to know so much. May I ask do you follow the ketosis diet yourself?
Computer15
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Re: Announcing a Personalized Precision Medicine Clinical Trial to Reverse Dementia

Post by Computer15 »

I really appreciate everyone’s responses the information is so helpful. This site is amazing.
JoyfulGirl
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Re: Announcing a Personalized Precision Medicine Clinical Trial to Reverse Dementia

Post by JoyfulGirl »

Computer15 wrote: Fri Nov 24, 2023 3:03 pm
Julie G wrote: Thu Aug 31, 2023 5:00 am Dr. Bredesen's team is recruiting participants for his next randomized, controlled clinical trial. To see if you or your loved one is eligible to participate, learn more here.
Hi Julie
I am new and just found out that I have two apoe4 genes like my mother who is 72 and was just moved to memory care due to the progression. So I am just trying to navigate all of this. My understanding is if anyone documents this then long term care insurance is no longer an option, which makes it very difficult to be proactive in prevention. So when involved in a trial do they share this information disqualifying a person from future long term care insurance?
Thank you so much!

{Note - I used my mod powers to edit your post and quote Julie, so she'll be notified of your post - Tincup}
Hello and welcome, Computer15!

Thank you for joining our site and posting in the forum.

As one of the Support Team Interns here, 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. In addition to the Primer, our Wiki is a wealth of information, including a bit about the Bredesen Protocol and ReCODE.

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,
Karen (JoyfulGirl)
Computer15
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Re: Announcing a Personalized Precision Medicine Clinical Trial to Reverse Dementia

Post by Computer15 »

[media][/media]
Computer15 wrote: Fri Nov 24, 2023 10:07 pm Hi Nancy

Thank you so much for your post it’s like a breath of fresh air. I am very sensitive right now bc of all this with my mom and the pure hell she is going through and how I have to fight like hell for her bc her care team as given up on her and I just found out about having the two genes myself, which Dr Sabbaugh himself told me that my mom was predestined to get this based on those genes and she just went downhill so quickly.
However I am very different than my mom and have for the last 10 or more years eaten healthy and have exercises and I am very social. I have 4 little kids and work full time so my time is extremely limited and so I really just need someone to help me get started with the tests recommended in Brenden’s book and what supplements to take and what I should be eating. I am very disciplined especially when given a plan. I will check out your health coaches. Please let me know of any other helpful information you seem to know so much. May I ask do you follow the ketosis diet yourself?
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Re: Announcing a Personalized Precision Medicine Clinical Trial to Reverse Dementia

Post by Tincup »

Computer15 wrote: Fri Nov 24, 2023 5:45 pm Where can I get testing done privately?
I just learned of this company and added it to the Wiki. If they have the tests you want, may be a very low cost option. Marek Diagnostics Uses Labcorp labs. Select Lab Builder option for lowest cost DIY. They chart $5 for blood draw. Looks to be very low cost when used to build your own.
Tincup
E3,E4
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Re: Announcing a Personalized Precision Medicine Clinical Trial to Reverse Dementia

Post by Computer15 »

Thank you!
Do most people just order their labs based on Brendsen’s book or do they actually join his program. It’s very pricey so I would love to hear from those who have followed his book on their own.
Is there a cheat sheet on what the labs should be and what to take if they are not within optimal range?
Is there a cheat sheet on food, so much of this a day so much of that stay away from this. I did find the labs work up cheat sheet and that was very helpful. I read his first book which based on this site seems to be somewhat outdated so I ordered his new one. I have a major head cold right now so I want to take his test again because I believe I can score much better once I am feeling better. My score was a 29 on the Apollo website but I did much better even with the head cold on the food for brain test, that I scored 84 well above average for my age group.
Is there anyway to know if you have amyloid or tau in your brain without all the imaging?
I appreciate everyone’s knowledge.
Hope everyone enjoyed their Thanksgiving!
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Re: Announcing a Personalized Precision Medicine Clinical Trial to Reverse Dementia

Post by rmet »

Just curious about Computer15’s question. I am following her question….
Computer15
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Re: Announcing a Personalized Precision Medicine Clinical Trial to Reverse Dementia

Post by Computer15 »

I have finished Dr Brendsen’s second book and it’s a lot of information.

Is there a link to a simplified guide to which supplements are imperative to start taking as there are so many in the book.

Also it seems like this book has so many more labs that are suggested to be drawn than on the Apollo health site.

My muscle composition is low based on 23 and me and I am already very skinny, in his book the amount of protein is very little. Is there variances for different genes/body types and if so what is the best protein powder supplement.

Thank you!

computer15
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