Welcome!!!

A primer for newbies and old pros alike.
NF52
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Re: Welcome!!!

Post by NF52 »

LynnDeeOH4 wrote:Hello,
I would like to introduce myself. I am 59 years old female, and my mother (age 86) has Alzheimer's disease. In 2017 I found out that I carry one APOE-e4 allele and one APOE-e3 allele (through 23andMe and Prometheus). In 2018 my husband and I started eating a totally plant-based (vegan) diet. I also take saffron and turmeric along with vit D3 and Omega 3 (from Flax Seed oil). I feel that my memory has slowly been declining. I have the most struggle with names (even with friends). I try to exercise 3 times a week - but would like to increase that to daily. I have signed up for the Brain Health Registry and take periodic surveys and cognitive testing. I also sign up for several research studies - but haven't been contacted by any. I looked into the Dr. Bedesen Protocol - but it was too costly and the idea of fasting doesn't sound very doable.

To stimulate my mind I run my own home-based reselling business online and I also co-lead a Bible study. I would like to learn some new dances (line dancing, etc.) - which I've heard is great for stimulating memory.

I joined this community in hopes of learning more about how to keep my brain and body healthy - and prevent further memory decline.
Welcome, LynnDeeOH4! I'm guessing from your user name and your first post about the U. of Cincinnati study that you live in the great state of Ohio. I've never lived there, but did total my car near Elyria one snowy April morning many years ago, with no injury to me and wonderful help from the state police to a scared 22 year old in a blizzard, so will also be a Buckeye fan!

I too had a mom with Alzheimer's disease (or what is sometimes called "mixed dementia: Alzheimer's and vascular type"} with a history of high blood pressure, family history of strokes and late-onset congestive heart failure. If that's similar to your mother's story, I imagine you share the respect I had for my mother's grace, grit and even humor as she dealt with issues that at times baffled her sharp mind.

It sounds like you and your husband have three great years of a vegan diet, and useful supplements, which have no doubt greatly increased your resilience to the risk of one ApoE 4 gene (that ApoE 3 is still doing it's best to protect you also!). You may want to look at the Biomarkers suggested by Stavia, a physician with ApoE 4/4 about your age who has written a superb Primer
Here's a link to her section on biomarkers and tests for markers and vitamins like B-12 Primer:Biomarkers.

When I want to check a level that I know my insurance won't cover, I just use one of these options and order the test online, get an email lab order that I can take to my local blood lab and usually get the emailed results with a reference range of normal values within a day or two. Here's info on that if you need it: Direct to Consumer Lab Testing Options.

Running an online business and Bible study group means you are doing high level problem-solving (tech, financial, customer service etc.) which is associated in multiple cohort studies with maintaining cognitive flexibility and resiliency in mid-life and later. And dancing and exercising means you are helping your brain stay nimble and your body strong!

Like you, I've signed up for the Brain Health Registry and some others, which you can see here: ApoE4 Alzheimer's Research: What's New I was a participant in a clinical trial: Generations 1, for people with ApoE 4/4 and normal cognition from 2017-2020. I am a volunteer member of a Research Participant Advisory Board for the Alzheimer's Clinical Trial Consortium, funded by the NIHand run by UC-San Diego to improve patient recruitment, retention and ethical support for participant needs. I'm surprised that you haven't been contacted by studies you've contacted (shame on them!)

I'd be glad to help you try to find nearby or online studies, or get you contact info for studies. You can either just reply to this email that you'd like me to send you a Private Message or you can send me one if you'd like to learn more about clinical studies. Here's how to do that, from our How to Guide in this section: How to use Private Messages

Not to get too far down a rabbit hole, but I've just been reading that a plant-based diet may slow or even reverse narrowing of the carotid arteries, which happens in "normal aging" but appears to accelerate in ApE4 carriers. It is considered an accurate marker of "preclinical atherosclerotic disease" even in people with otherwise good blood pressure and metabolic markers. If heart disease or strokes/TIAs are in your mom's history, and if you have elevated LDL-C or LDL-P (particle) numbers, you may want to talk with your PCP about whether it's worth getting some imaging, such as a coronary artery scan (CAC) or an ultrasound scan of your carotid arteries (Carotid Intima Media Thickness: CIMT), since that may guide suggestions to aggressively lower LDL and maintain great cardiac and vascular health.

I hope summer is bringing you the ability to enjoy life outside with friends and family, Lynn, and that you feel empowered to ask and share anything you like with your new "family" of ApoE4s.

Hugs from the state of Virginia!
4/4 and still an optimist!
Quantifier
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Re: Welcome!!!

Post by Quantifier »

LynnDeeOH4 wrote:Hello,
I would like to introduce myself. I am 59 years old female, and my mother (age 86) has Alzheimer's disease. In 2017 I found out that I carry one APOE-e4 allele and one APOE-e3 allele (through 23andMe and Prometheus). In 2018 my husband and I started eating a totally plant-based (vegan) diet. I also take saffron and turmeric along with vit D3 and Omega 3 (from Flax Seed oil). I feel that my memory has slowly been declining. I have the most struggle with names (even with friends). I try to exercise 3 times a week - but would like to increase that to daily. I have signed up for the Brain Health Registry and take periodic surveys and cognitive testing. I also sign up for several research studies - but haven't been contacted by any. I looked into the Dr. Bedesen Protocol - but it was too costly and the idea of fasting doesn't sound very doable.

To stimulate my mind I run my own home-based reselling business online and I also co-lead a Bible study. I would like to learn some new dances (line dancing, etc.) - which I've heard is great for stimulating memory.

I joined this community in hopes of learning more about how to keep my brain and body healthy - and prevent further memory decline.

Hello LynnDeeOH4! You have an excellent start with diet, exercise, and challenging your mind. A great thing about programs like Bredesen's is that you don't have to do everything to benefit, and you can keep adding more elements as you are ready for them. Also, you don't have to start with full application of any specific part, you can ease yourself into it. Even something that appears formidable such as fasting. After all, we all fast while sleeping. So one can go stepwise: First - fast all night - no getting up to snack in the middle of the night. Second - define a bedtime and define a time before that as the latest time to finish the last meal of the day. Gradually move that time earlier until you finish eating at least 3 hours before bedtime. By this time you are fasting 3 hours + hours spent in bed at the least. Third - gradually delay the first meal of the day. Soon enough you'd be fasting 12 hours a day.

Good luck!
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Re: Welcome!!!

Post by rwratner »

I live in NYC am 72 and have a family history with 3 who died from Alzheimers, and began to notice signs of cognitive decline over the past two years. I went to neurologist who won't even order the genetic testing and appears to not be open to helping me undertake the protocols outlined by Dr. Bredesen in his books. Can anyone recommend a neurologist is not so locked into the only finding a drug (which as there now is none) and open to holistic approaches. Thank you.
NF52
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Re: Welcome!!!

Post by NF52 »

rwratner wrote:I live in NYC am 72 and have a family history with 3 who died from Alzheimers, and began to notice signs of cognitive decline over the past two years. I went to neurologist who won't even order the genetic testing and appears to not be open to helping me undertake the protocols outlined by Dr. Bredesen in his books. Can anyone recommend a neurologist is not so locked into the only finding a drug (which as there now is none) and open to holistic approaches. Thank you.
Welcome to the ApoE4.info forum!

On behalf of our community, let me say how sorry I am that the neurologist you saw would not order genetic testing and was not open to either helping you with the suggestions in Dr. Bredesen's books or able to give you suggestions on who could help with that. Like you, I have a family history of Alzheimer's (and vascular dementia) and also heart disease. When we've been around a while (I'm 69), we don't necessarily expect our doctors to have all the answers or to always be able to fix anything, but we do expect and deserve ALWAYS to be treated with respect, empathy and as partners in our own health. Sometimes that means seeking a different doctor!

You didn't mention whether you have a good rapport with your primary care doctor. If you do, you may be able to call and ask for a 30-45 minute consultation to share your sense of things changing over the past two years. Your doctor should be able to get insurance coverage for several of Dr. Bredesen's recommended tests, among them: HbA1C, C-reactive protein, glucose levels and insulin resistance, Vitamin B-12 and Vitamin D, thyroid, comprehensive blood panel, LDL, HDL and triglycerides.

You should also ask if your own doctor will order an ApoE allele test based on your family history, and the link to both cardiac and brain health. If your doctor isn't able to order the ApoE4 test (or can order it but knows your insurance won't cover it), you can do that through companies such as 23&me, which currently shows a price of $199. for the Health + Ancestry Test. 23&me has big sales about twice a year, usually starting in November before "Black Friday Sales" and again in May around Mother's Day, with a price of about $ 129 for the same test. Since knowing the results may not change your needs too much immediately, you may want to wait for the Nov. sales.

I'm not sure if the neurologist you saw was affiliated with an academic or research-based Memory Disorders clinic that has a team of nurses, neuropsychologists and neurologists who work together to make a careful evaluation and recommendations. I have been through such evaluations as a participant in a clinical trial for people with ApoE 4 and normal cognition with staff who also did evaluations on people experiencing cognitive concerns. The experience was very informative with specific recommendations shared with me (even though I wasn't expecting that!) In the 3 years I went there, I always felt welcomed and treated like an individual, not a lab rat!

A similar kind of center that I know of in NYC (mine was in D.C.) is at NYU's Cornell-Weill Medical Center with two clinics. This is one of them; they can refer you to their Memory Evaluation clinic if more appropriate. Advance warning: These clinics often have waiting lists of several months for appointments. But if you decide to go there, that gives you time to work with your doctor to get some tests done and mean fewer tests any NYU. The Alzheimer's Prevention Clinic Here's some info from the link provided:
... To schedule a visit, call (212) 746-0226.
Our Philosophy
Alzheimer's disease (AD) starts in the brain 20 to 30 years before the onset of symptoms, giving physicians ample time to intervene in an individualized fashion for those at risk. There is no "magic pill" or "magic cure" for AD treatment or prevention; however, combining a variety of strategies based on strong science and safety may yield the best chance for benefit.

Our approach is based on a collaborative care model for Alzheimer's disease, while being firmly grounded in the latest scientific evidence-based therapies. This integrated approach to care aims to provide the most comprehensive therapies for patients with Alzheimer's disease, mild cognitive impairment due to Alzheimer's, "preclinical" Alzheimer's, and patients who are at risk for the disease.

Personalized Medicine and Personalized Nutrition
We use the latest scientific evidence and consider a variety of factors — such as current and past medical problems, genetics, and nutritional patterns — to tailor therapies for each patient. These principles (also referred to as "pharmacogenomics" and "nutrigenomics") form the core of our APC approach. We emphasize lifestyle and nutritional approaches and collect data to help further the scientific study of the effects of dietary modifications on brain health.
If you'd like to pursue working with a Functional Medicine Doctor, or with a health coach who is familiar with Dr. Bredesen's protocol, we have some resources to help. Health coaches are trained to help you identify your goals and often coach their clients through online or phone consultations, so you aren't restricted to the NYC area. FM doctors also often provide video or phone consultations, although some want to see you in person the first time. Here are our Wiki resources:
Searching for a Healthcare Practitioner
ApoE4-Aware Healthcare Practitioners
ApoE4-Aware Health Coaches

I suggest taking some time to check out strategies that our own ApoE 4/4 Dr. Stavia recommends in her Primer. Many of the strategies are very similar to Dr. Bredesen's and are things we can work on without the blessing of a neurologist! And for myself, I take the view that while I didn't volunteer to fly this complex plane that is my brain, I can darn well learn a thing or two about how to keep it aloft for a good while longer. We're here for you in the journey, my friend.
4/4 and still an optimist!
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Re: Welcome!!!

Post by Chris B »

Julie
I have watched multiple videos with you as a participant... thanks for all you have done and continue to do!
I am new to the Bredesen protocol having started re code as a 4/4 about a month ago.
I am working with Diane Parks NP as my practitioner and she has been wonderful... just started detox from toxins and arsenic with mold to follow. I am not insulin resistant but have a CAC of 287 with inflammation markers elevated.
I am all in on very strict diet following keto recommendations and daily fasting of 16-17 hours.
My ketones in the am are around .6 and I am having trouble getting them consistently above 1 even after fasting walk and workout with TRX... they stayed at .6 this morning after walk and strength training.

Do not want to supplement with ketone salts and esters look to be very expensive... suggestions on what else I can do?
Also as a 4/4 is it normal to struggle with ketosis as my wife’s numbers are in the 2-3 range on same diet.
Thank you!
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Re: Welcome!!!

Post by Tincup »

Chris B wrote:Do not want to supplement with ketone salts and esters look to be very expensive... suggestions on what else I can do? Also as a 4/4 is it normal to struggle with ketosis as my wife’s numbers are in the 2-3 range on same diet.
Hi Chris, welcome! My 2 cents - unless you are experiencing cognitive issues at the moment, that ketones seem to help, I would not stress about it. Some folks can really feel the difference. I normally run around 0.5 mmol/L on a morning test. My 4/4 wife is in the same category. I've been keto adapted since 2009. When you look at the Virta Health data (I'm not taking the time to locate the paper), most of their participants test at around 0.3 mmol/L, despite being coached on a keto diet to reverse T2 diabetes. This is because the body gets better at using ketones, so it is harder to get high numbers. And there is a lot of biological individuality. On extended 7 day water fasts, both my wife and I have run our BHB up to 8.0 mmol/L, as high as the meter will go. Neither of us notice any difference in cognition.

A less expensive way to raise BHB exogenously is to consume the MCT oil called caprylic acid (C8) like Brain Octane. It still isn't cheap.

My own take is that, if your ketone system is operable, the body will make what it needs. It is expensive for it to make more than it needs.
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seachangehealthcoach
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Re: Welcome!!!

Post by seachangehealthcoach »

Tincup wrote:
Chris B wrote:Do not want to supplement with ketone salts and esters look to be very expensive... suggestions on what else I can do? Also as a 4/4 is it normal to struggle with ketosis as my wife’s numbers are in the 2-3 range on same diet.
Hi Chris, welcome! My 2 cents - unless you are experiencing cognitive issues at the moment, that ketones seem to help, I would not stress about it. Some folks can really feel the difference. I normally run around 0.5 mmol/L on a morning test. My 4/4 wife is in the same category. I've been keto adapted since 2009. When you look at the Virta Health data (I'm not taking the time to locate the paper), most of their participants test at around 0.3 mmol/L, despite being coached on a keto diet to reverse T2 diabetes. This is because the body gets better at using ketones, so it is harder to get high numbers. And there is a lot of biological individuality. On extended 7 day water fasts, both my wife and I have run our BHB up to 8.0 mmol/L, as high as the meter will go. Neither of us notice any difference in cognition.

A less expensive way to raise BHB exogenously is to consume the MCT oil called caprylic acid (C8) like Brain Octane. It still isn't cheap.

My own take is that, if your ketone system is operable, the body will make what it needs. It is expensive for it to make more than it needs.
Hi Chris,
Welcome to the forum and the ApoE4 online community. I am posting the following links below in case you are interested in exploring the forum (which we hope you are). We encourage our community members to share their personal story so we can keep the good information and community feel alive and well. Thank you in advance for connecting and we encourage you to stay in touch.

How-To Guide

Primer

Our Stories

Wiki
Jennifer Balzano
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Chris B
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Re: Welcome!!!

Post by Chris B »

Thanks for the follow up.. really appreciate it.6
Susieandme
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Re: Welcome!!!

Post by Susieandme »

Kia Ora
I live in New Zealand but am originally from Slovenia (Europe). Unfortunately, in NZ you can't just get your genes tested nor you can ask for other more complicated blood tests (vitamins, toxicity etc). If you are 55 like me, you are not even considered in danger to develop Alzheimer's. However, my dad was diagnosed with it and died 3 years ago after 10 years battle. My aunty (on dad's side) was also diagnosed and is now on a super fast downright spiral. Their mum (my grandmother) had (apparently) dementia in her last years (85), no one bothered to get her a diagnose. She died completely insane and abandoned. My mother (85) has Parkinson's and with that quite overwhelming dementia. No one in NZ is taking me serious so this group is extremely important to me. Thank you for existing :-)
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Re: Welcome!!!

Post by SBee »

Susieandme wrote:Kia Ora
I live in New Zealand but am originally from Slovenia (Europe). Unfortunately, in NZ you can't just get your genes tested nor you can ask for other more complicated blood tests (vitamins, toxicity etc). If you are 55 like me, you are not even considered in danger to develop Alzheimer's. However, my dad was diagnosed with it and died 3 years ago after 10 years battle. My aunty (on dad's side) was also diagnosed and is now on a super fast downright spiral. Their mum (my grandmother) had (apparently) dementia in her last years (85), no one bothered to get her a diagnose. She died completely insane and abandoned. My mother (85) has Parkinson's and with that quite overwhelming dementia. No one in NZ is taking me serious so this group is extremely important to me. Thank you for existing :-)
Kia Ora, Susieandme, and a warm welcome to you!
We are so glad that you have found this community...please know that there are many supporters here and you are not alone!

I am truly sorry to hear that you have experienced such sadness and loss around Alzheimers within your family. I can only imagine how devastating this must be especially when it feels like there is no sense of control over such circumstances. It certainly takes courage to share these feelings and the belief and hope that there are some possible strategies to address one's situation. This community and its members work together to support one another and help reduce the risk of cognitive decline through research based contributions.
There are several places I can direct you to discover more about Alzheimers and the ApoE4 gene. A good place to begin is with the Primer which was written by a physician who also happens to be from New Zealand! It offers an introduction to ApoE4 along with various research-based prevention strategies.
In addition, you can visit the How-To Guide which is a basic navigation tool for the site.
In closing, I wanted to share with you that I am 58 years old and just discovered that I carry one of the ApoE4 alleles which increases my risk for Alzheimers. While I do have a genetic predisposition to AD, I feel hopeful that there are many controllable lifestyle factors (like diet, exercise, sleep) which can make a difference in reducing my risk of developing AD!
Please explore the site and feel free to ask any questions that you may have during the process. Again, we're so glad you have joined us!
Warmly,
Sue
SBee
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Functional Medicine Certified Health Coach
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