another newbie

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Cindy
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Re: another newbie

Post by Cindy »

TCHC wrote: Tue Feb 28, 2023 9:50 am Hi Cindy,
You've have some great responses on here, lots of tips and advice, so I guess you've got plenty to work on. All I wanted to add was to say well done for taking action and working on prevention. You mustn't underestimate how far you've come already. I know it's overwhelming to start with, but just try to do a little at a time and build on that. Small changes add up and as you start noticing some differences, that will just give you more motivation to keep going. Tackle some easy wins first to keep yourself motivated and positive.
Good luck and do keep using this resource to get help.
Lindsey
Thank you for your post -- I'm (thankfully) not so overwhelmed anymore. Don't get me wrong -- the more I dig into things, the more I realize I don't understand a lot of things, but I do get more determined to learn as much as I can. So thank you.
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Re: another newbie

Post by Cindy »

TheresaB wrote: Wed Feb 22, 2023 11:08 am
Cindy wrote: Mon Feb 06, 2023 2:55 pm Hi Everyone

Gonna be honest, I'm very overwhelmed and feel like I'm drowning in an overload of data and terms that I have no idea what they mean. The following are a few items to describe me & my lifestyle: (But before I do that, I'm so grateful to have found this website and very thankful for everyone sharing their wealth of information as well as the emotional and mental support you provide.)

My name is Cindy, age 63, APOE3/4. Alzheimers runs in the family in a big way. My maternal grandmother as well as her sister had it, my Mom was diagnosed with early onset in her late 50's, 2 of her siblings had late onset Alzheimers. My oldest brother was diagnosed with early onset Alzheimers about 10 years ago (he would have been in his late 50's). (Side note, we found out within the past year that pancreatic cancer also runs in the family (we believe it is on the maternal side as well) with the ATM gene variant -- 2 other brothers have just recently passed away from pancreatic cancer. It's been a lot to deal with in a heartbreaking way. Since I wanted to find out about the ATM variant (I do not have it), I decided to check on the APOE status as well. Another side note -- it appears that my oldest brother with early onset is not APOE 4 -- I do not know whether or not he has any other Alzheimer's genes -- my sister in law is going to see what she can find out from the doctor who diagnosed him.) Anyway, I stumbled upon and have read Dr. Bredesen's books and have enrolled in Apollo Health in precode status (my cognitive tests were ok and I have already received my precode blood results), my first appointment with a certified doctor isn't until April. I have always tried to eat healthy although I realize I've got a ways to go with my diet to get it in line with the Keto-flex diet (and I'm struggling with this a lot--not the fasting part but the carbohydrate/fiber intake and getting my caloric intake up--BMI is 19). I'm very active, golf a lot but also exercise regularly, minimal alcohol (now) at least 99% of the time. I've had chronic sinus infections just about my entire life.

I guess that's it. Since my appointment isn't until April I've been trying to get my diet more in line with Keto-Flex but am confused about what my next steps really should be between now and then. With my current sinus issues, instead of getting another antibiotic (just had one last month) -- I've just started to use grapefruit seed extract nasal spray -- which has helped enormously, but I can't help but think that there is probably an underlying condition that I'm unaware of that is causing the infections. Also, I failed the visual acuity test -- which also has me thinking that there is an underlying issue that needs to be addressed.

Thank you again -- to all the administrators on this website and the feedback that everyone provides -- it truly does help -- you give me hope.

Yes, it can be very overwhelming, I remember when I first started here years ago, I didn't even register/post at first, I lurked for about a year because I was so overwhelmed with terminology and just how smart everyone else seemed to be on these forums. I hope I can help here.

You say you're confused about next steps to take before your Precode appointment.

Well, in following the advice from Dr Bredesen’s book, The End of Alzheimer’s Program, (TEoAP) the order of events are:
1. address insulin resistance
2. get into ketosis
3. optimize nutrient, hormone and trophic factor (growth factor) support
4. resolve and prevent inflammation
5. treat chronic pathogens
6. identify and remove toxins
7. rule out sleep apnea and optimize sleep.

Step 1 is address insulin resistance. Us 4s are more predisposed to slowed glucose processing in the brain, so this is very important for us and it goes hand in hand with step 2 ketosis since a person can't generate ketones if they are producing too much insulin (a sign of insulin resistance). Gena mentioned a Keto-Mojo or some sort of ketone/glucose meter. This is a wonderful tool where you can gain great insight. We have an ApoE4.info wiki on insulin resistance that includes advice on how to lower it Insulin Resistance.

Step 2 ketosis, we also have a wiki on ketosis that discusses the different means of testing for ketones as well as a discussion on ketosis and why it’s important for us 4s. Ketosis and Ketogenic Diet There are guidelines, but every individual is different, so you may have to play with the amount of fat you consume and maybe, you might be able tolerate more (good) carbs and still keep blood sugar levels moderated and generate ketones (that's where a ketone/glucose meter comes in handy.) By tweaking, you should be able to generate ketones and not lose weight. There is a discussion for those with low BMI in TEoAP book, page 49 of my Kindle version. Of note, I assume the KetoFlex you’re following is KetoFlex 12/3 which is the recommendation from Dr Bredesen for the majority of folks, but remember as a 4 carrier, we’re not in the majority, we should be following more KetoFlex 14/3 or even better, 16/3.

As a tool for KetoFlex, I find the visual graphic of Dr B’s KetoFlex pyramic to be very helpful.

Ketoflex_pyramid3.jpg

We have an ApoE4.info wiki on Dr B’s protocol (highly abbreviated “Cliff Notes” version) Bredesen Protocol Otherwise chapters 4-11 of Dr B’s TEoAP book go into detail an each step of the KetoFlex pyramid.

I'm not going over each step, but emphasizing areas of especial interest to 4s, so passing over step 3 to step 4: resolve and prevent inflammation. As 4s, we are in a more pro-inflammatory state than ApoE3s or 2s, so we especially need to be cognizant of inflammatory triggers, especially since in large part we can’t “feel” when we’re internally inflamed until it manifests as, say, an autoimmune disease (Cleveland Clinic says there are over 100 autoimmune diseases). You may have heard of the colloquialism “inflammageing” which has been a term coined given the connection between inflammation, health issues, and accelerated aging (aging is the highest risk factor for Alzheimer’s).

Skipping to step 7: Optimizing Sleep, because this is an area you can start working on now before your appointment. This is more than just trying to get 8 hours of sleep. Dr Matthew Walker, professor of neuroscience and psychology at UC Berkeley and author of the book
Why We Sleep describes the four pillars of sleep as depth, duration, continuity and uninterrupted. You can start working on good sleep hygiene now. This article has some helpful advice What is sleep hygiene?
What is sleep hygiene? .
Our ApoE4.info wiki on Circadian Rhythm also is very informative, Circadian Rhythm

A side note on your family history. I noticed in your post is the strong trend of Alzheimer’s in the women of your family. Yes, women get more Alzheimer’s than men, but this could also indicate mitochondria that might not be as strong as they should be being inherited. Mitochondria is passed down from mom (no contribution from dad). Mitochondria are in our cells and they provide energy. Alzheimer’s is largely an energy issue for the brain. If the mitochondria aren’t working optimally, the brain isn’t getting the energy it needs, and it needs a lot of it 24/7. Mitochondrial dysfunction is a major determinant in how we age and is one of the earliest and most prominent features of Alzheimer’s Disease. If there is a strong passage from mother to daughter to granddaughter, this might be an area to investigate further. You can learn more about mitochondria and strategies to try to improve (or avoid damaging) it in our ApoE4.info wiki: Mitochondria

I also keyed into the fact you said there's Early Onset Alzheimer’s in your family history. ApoE4 can induce an earlier onset of Alzheimer’s, but ApoE4 is generally associated with Late Onset Alzheimer’s Disease (LOAD) also known as sporadic Alzheimer’s. ApoE4 isn’t a deterministic allele, some 4s get AD whereas some live a long, healthy, cognitively intact life, i.e. sporadic. Being an ApoE4 carrier doesn’t mean you will get Alzheimer’s, it just heightens the risk. So it’s especially important to remove/diminish as many factors that drive Alzheimer’s disease as possible, ApoE4 is only one of those factors.

Late Onset or Sporadic Alzheimer’s compares with Early Onset Alzheimer’s Disease (EOAD), also known as Familial Alzheimer’s disease (FAD) or Early onset familial Alzheimer disease (eFAD). True Early Onset is genetically driven (deterministic), not by ApoE4 but by three single-gene mutations: (1) Amyloid precursor protein (APP) on chromosome 21, (2) Presenilin 1 (PSEN1) on chromosome 14, (3) Presenilin 2 (PSEN2) on chromosome 1. Early Onset makes up less than 5% of Alzheimer’s diagnoses. There are also some other genes that influence ApoE4 negatively, raising the risk, and some that are beneficial, so that might be an issue in your family, that's discussed (among other things) in Peter Attia's interview with Dr Kellyann Niotis, if interested you can listen here: #236 ‒ Neurodegenerative disease: pathology, screening, and prevention

Lastly, you’re probably correct that there’s an underlying factor contributing to your infections. Hopefully your PreCode appointment/tests will help uncover that. Working with a functional doctor helped me in identifying dietary drivers that raised my inflammatory markers.

Okay, that's enough. I’ve probably overwhelmed you even more, but hopefully I’ve contributed some gems.
Best to you in your health journey and let us know how things go.
Thank you for your (amazing) post above, your wealth of information! and posting the order of events (above) -- even though I read the book, I neglected to glean that important part -- I do appreciate your pointing that out to me! I will be reading more about the mitochondria (via your above link) -- thank you for that. I just finished the book you recommended above (Why We Sleep) -- I am starting to sleep better, although would like to do better.

I am doing about a Keto/Flex 16 to 18 and test my glucose and ketones every morning (occasionally I will check during the day for glucose). Generally speaking, my glucose has been in range but ketones have been more out of range than in. I will admit to having some issues getting enough fat without impacting higher protein levels. I'd say this is still a work in progress for me to get my diet better for the results I'd like.

I do have one other question for you -- you mention the EOAD familial Alzheimers disease gene mutations of APP, PSEN1 and PSEN2 -- I've been trying to find out whatever information I can about those genes and comparing the information to my own raw DNA data. I feel like I've been spinning my wheels a little but I am finding possibly some SNP matches (but I'm not 100% sure) Is there a website (or anything?) that you would recommend? I am determined (maybe obsessed?) to learn as much as I can and do whatever I can now not only for myself but for my brother, nieces and nephews (and great nieces) -- Thank you again!
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Re: another newbie

Post by Cindy »

gena wrote: Wed Feb 22, 2023 8:30 am
Cindy wrote: Mon Feb 06, 2023 2:55 pm Hi Everyone

Gonna be honest, I'm very overwhelmed and feel like I'm drowning in an overload of data and terms that I have no idea what they mean. The following are a few items to describe me & my lifestyle: (But before I do that, I'm so grateful to have found this website and very thankful for everyone sharing their wealth of information as well as the emotional and mental support you provide.)

My name is Cindy, age 63, APOE3/4. Alzheimers runs in the family in a big way. My maternal grandmother as well as her sister had it, my Mom was diagnosed with early onset in her late 50's, 2 of her siblings had late onset Alzheimers. My oldest brother was diagnosed with early onset Alzheimers about 10 years ago (he would have been in his late 50's). (Side note, we found out within the past year that pancreatic cancer also runs in the family (we believe it is on the maternal side as well) with the ATM gene variant -- 2 other brothers have just recently passed away from pancreatic cancer. It's been a lot to deal with in a heartbreaking way. Since I wanted to find out about the ATM variant (I do not have it), I decided to check on the APOE status as well. Another side note -- it appears that my oldest brother with early onset is not APOE 4 -- I do not know whether or not he has any other Alzheimer's genes -- my sister in law is going to see what she can find out from the doctor who diagnosed him.) Anyway, I stumbled upon and have read Dr. Bredesen's books and have enrolled in Apollo Health in precode status (my cognitive tests were ok and I have already received my precode blood results), my first appointment with a certified doctor isn't until April. I have always tried to eat healthy although I realize I've got a ways to go with my diet to get it in line with the Keto-flex diet (and I'm struggling with this a lot--not the fasting part but the carbohydrate/fiber intake and getting my caloric intake up--BMI is 19). I'm very active, golf a lot but also exercise regularly, minimal alcohol (now) at least 99% of the time. I've had chronic sinus infections just about my entire life.

I guess that's it. Since my appointment isn't until April I've been trying to get my diet more in line with Keto-Flex but am confused about what my next steps really should be between now and then. With my current sinus issues, instead of getting another antibiotic (just had one last month) -- I've just started to use grapefruit seed extract nasal spray -- which has helped enormously, but I can't help but think that there is probably an underlying condition that I'm unaware of that is causing the infections. Also, I failed the visual acuity test -- which also has me thinking that there is an underlying issue that needs to be addressed.

Thank you again -- to all the administrators on this website and the feedback that everyone provides -- it truly does help -- you give me hope.
Hi Cindy-
I’m also new, close to your age, 3/4, and a bit overwhelmed. I wanted to respond to your chronic sinus infections. I had chronic sinus infections until I changed my diet 8 years ago giving up refined sugar and limiting higher glycemic carbs. I also use saline nasal washes when I first feel congestion, and that keeps sinus infections at bay. I don’t have them anymore.
Finally, do you have a KetoMojo blood and ketone monitor (or something like it) to start giving you glucose and ketone data about your body? I’ve been using it for a month before breakfast but also at different times during the day. I’ve learned an enormous amount about how even foods I thought were ok/good for me (oatmeal) cause a big glucose spike that does not come down quickly. Using the KetoMojo is one thing I’ve done in the past month since learning I’m 3/4 that has taught me a ton about my body and helped me to make quick adjustments.
Gena
My sinus issue has gotten a lot better (although not gone). If I were to describe it -- it's like I have a continuous allergy that causes my left sinus to just run and run, but at least it's not full and congested like it was before and the fullness and pain that was in my sinus and ear are gone. So I think progress is being made but just not completely! I'm curious besides eliminating sugar (I have done this) as well as the high glycemic carbs -- were there other dietary changes you made that would have contributed to the elimination of your sinus issues? I do use the ketomojo device and take my glucose & ketones just about everyday. I'm more in range on glucose but ketones is a little harder to get into range.

Thank you for your response!
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Re: another newbie

Post by Cindy »

JD2020 wrote: Wed Feb 08, 2023 11:01 am
Cindy wrote: Mon Feb 06, 2023 2:55 pm I've got a ways to go with my diet to get it in line with the Keto-flex diet (and I'm struggling with this a lot--not the fasting part but the carbohydrate/fiber intake and getting my caloric intake up--BMI is 19).
Hi Cindy,

I want to respond to this small part of your post. I just turned 60, am 3/4, thin like you, and after trying to get in line with Keto-flex for the last 3 years, got a reality check from two friends who I hadn't seen for a while who were very concerned about my 8 pound weight loss. It was slow and steady, and the family later said that they had not noticed because we see each other every day.

So I have been diligently eating more than my body wants for the last several months to regain the weight. It's not easy and not fun. I haven't been truly hungry for a meal for quite a while. The whole family got Covid in December, and I realized that in one week, I could lose all of my gains. So I had to eat even while ill. The point is this: for some of us, the weight loss concerns on this program should not be ignored. I think when people get older, most either get frail or thick. Both have their health issues. You and I will have to watch out for frailty. Don't loose too much weight! I wish I had made the issue first priority after 2 pounds gone rather than 8.
Well, I just lost 2 more lbs -- but I'm at 18.9 now. I guess I feel that I'm doing the best I can but still not in the keto range as much as I'd like but that could also be because I'm running out of fat to burn? I honestly will admit that I'm a little bit confused at this point -- I think it's important to be in keto yet how do I manage that and still eat enough to not lose weight? Thank you for your post and stressing the importance of not losing too much, it's on my radar screen and I guess I just have to work a little harder on this part. Thank you again
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Re: another newbie

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Cindy wrote: Mon Apr 17, 2023 3:10 pm Well, I just lost 2 more lbs -- but I'm at 18.9 now. I guess I feel that I'm doing the best I can but still not in the keto range as much as I'd like but that could also be because I'm running out of fat to burn? I honestly will admit that I'm a little bit confused at this point -- I think it's important to be in keto yet how do I manage that and still eat enough to not lose weight? Thank you for your post and stressing the importance of not losing too much, it's on my radar screen and I guess I just have to work a little harder on this part. Thank you again
I do not have an answer for you. For me, for now, maintaining weight is the priority. I make sure I am getting plenty of healthy fats, but I'm not even measuring ketones for now. I eat good quality food, gallons of olive oil, avocado, A2 organic milk, etc etc, so there is fat available for my body. But...I have added bread and beans and grains. It is the best that I can do, at least for now, and I continue to incorporate other facets of ReCODE.
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Re: another newbie

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Cindy wrote: Mon Apr 17, 2023 2:01 pm I do have one other question for you -- you mention the EOAD familial Alzheimers disease gene mutations of APP, PSEN1 and PSEN2 -- I've been trying to find out whatever information I can about those genes and comparing the information to my own raw DNA data. I feel like I've been spinning my wheels a little but I am finding possibly some SNP matches (but I'm not 100% sure) Is there a website (or anything?) that you would recommend? I am determined (maybe obsessed?) to learn as much as I can and do whatever I can now not only for myself but for my brother, nieces and nephews (and great nieces) -- Thank you again!
As a 4/4 without family history of early onset, (grandmother got Alzheimer's in her 90s, I should be so lucky) this is not my area of expertise. But here are a couple possible resources:

Genes associated with Alzheimer’s disease: an overview and current status

SNPedia: https://www.snpedia.com/index.php/SNPedia

Podcast with Dr. Sharon Hausman-Cohen: Personalized Medicine Through Genomics:
https://www.apoe4.info/ep004-sharon-hausman-cohen/
-Theresa
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Re: another newbie

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Hi,
Lots of my clients are working not to lose too much weight. They're all eating lots of healthy fats and making fat bombs to try to snack on. The problem is that in ketosis, there's a good chance you won't feel hungry that often.
I do love this recipe (trying to attach it) for a mug bread. Really quick and easy to make and SO filling!
Good luck!
Lindsey
TCHC - Lindsey Byrne - The Cognitive Health Coach - UK
Functional Medicine Certified Health Coach (FMCHC)
Certified Re:CODE 2.0 Health Coach
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Re: another newbie

Post by TCHC »

IMG_1483.jpeg
TCHC wrote: Tue Apr 18, 2023 10:12 am Hi,
Lots of my clients are working not to lose too much weight. They're all eating lots of healthy fats and making fat bombs to try to snack on. The problem is that in ketosis, there's a good chance you won't feel hungry that often.
I do love this recipe (trying to attach it) for a mug bread. Really quick and easy to make and SO filling!
Good luck!
Lindsey
You do not have the required permissions to view the files attached to this post.
TCHC - Lindsey Byrne - The Cognitive Health Coach - UK
Functional Medicine Certified Health Coach (FMCHC)
Certified Re:CODE 2.0 Health Coach
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Re: another newbie

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TheresaB wrote: Tue Apr 18, 2023 8:02 am
Cindy wrote: Mon Apr 17, 2023 2:01 pm I do have one other question for you -- you mention the EOAD familial Alzheimers disease gene mutations of APP, PSEN1 and PSEN2 -- I've been trying to find out whatever information I can about those genes and comparing the information to my own raw DNA data. I feel like I've been spinning my wheels a little but I am finding possibly some SNP matches (but I'm not 100% sure) Is there a website (or anything?) that you would recommend? I am determined (maybe obsessed?) to learn as much as I can and do whatever I can now not only for myself but for my brother, nieces and nephews (and great nieces) -- Thank you again!
As a 4/4 without family history of early onset, (grandmother got Alzheimer's in her 90s, I should be so lucky) this is not my area of expertise. But here are a couple possible resources:

Genes associated with Alzheimer’s disease: an overview and current status

SNPedia: https://www.snpedia.com/index.php/SNPedia

Podcast with Dr. Sharon Hausman-Cohen: Personalized Medicine Through Genomics:
https://www.apoe4.info/ep004-sharon-hausman-cohen/
Thank you so much! I will take a look at these!
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Re: another newbie

Post by Cindy »

TCHC wrote: Tue Apr 18, 2023 10:16 am IMG_1483.jpeg
TCHC wrote: Tue Apr 18, 2023 10:12 am Hi,
Lots of my clients are working not to lose too much weight. They're all eating lots of healthy fats and making fat bombs to try to snack on. The problem is that in ketosis, there's a good chance you won't feel hungry that often.
I do love this recipe (trying to attach it) for a mug bread. Really quick and easy to make and SO filling!
Good luck!
Lindsey
Thank you! I'm going to try this. You are right -- I do not get hungry and I really do feel like I'm eating a lot!
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