New member here from Georgia, USA

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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cbow
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New member here from Georgia, USA

Post by cbow »

Hi,
I am Carol and I happened upon this site while trying to read my raw DNA data from 23andme. I have been researching my family history for years and really didn't realize that my DNA for ancestry was going to yield me this scary information. I knew that I must have the genes. All of my mother's paternal aunts had dementia and my mother had AD and passed at age 85. I was her caregiver for the last 7-8 years of her life. So, for me and my 4 siblings, we knew this could be on the horizon. However, seeing the genetic markers and reading what they actually meant, still has served a blow. I guess that I had hope that I skipped that gene pool. Anyhow, I have the 4/4 and I am going to be 52 in a month. I feel like I have been dealing with memory decline for some time now, but everyone says it's because I'm so busy. I am a working, mother of 2, and I helped to care for my mother in law who died of cancer and my mom of course prior to her death 3 years ago. So, now it's me that I need to care for. I still have a 15 year old at home. She suffers with mental illness issues and now that I know she likely carries this gene as well and her Dad probably has passed down some cancer genes, I think I have to keep this under wraps with her. She is depressed about enough at this point.
I am in the throws of menopause and have been dieting for over a solid year. And, I can't lose more than a few pounds that I seem to add back on with one good cheat meal. My metabolism is just not working. I mostly do an Atkins type of diet with low carb, high protein, so that won't be a huge stretch for me. I do eat red meat, so probably need to cut that down. My BMI is high. I'm short and stocky. I went on the 30 day whole food diet recently and only lost 3 pounds, that I added back as soon as I reintroduced dairy. But, the 3 pound loss just didn't seem like anything to me for everything that I had to cut out to get to that point, no legumes, no peanuts, no dairy in addition to the no sugars, breads, carbs that I'm already used to. My sleep is not great, but I attribute that to hot flashes of menopause. I'm really feeling like a mess right now, but I want to do what I need to do.
I saw first hand my Mom's decline and now I wish we had been better with her diet. She did love chocolate and we hated to deny her when it was such a small thing to bring her joy. As she was in her 80's, the weight just kept going up. We continually were adjusting thyroid meds for her, but it didn't seem to help. She ended up dying of a bad gallbladder. Her gastrointestinal issues were her biggest problems those last years and her Namenda and Galantamine seemed to stabilize her brain to a very slow decline. She probably was on those meds for about 10 years or more. Anyway, I'm glad I found this site and I look forward to all of the information that you share. I mentioned I have 4 siblings and we are all worried about this disease that took our Mom's memory. One sister is trying to get into a study now and I have invited her here as well.
Magda
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Re: New member here from Georgia, USA

Post by Magda »

cbow wrote:Hi,
I am Carol and I happened upon this site while trying to read my raw DNA data from 23andme. I have been researching my family history for years and really didn't realize that my DNA for ancestry was going to yield me this scary information. I knew that I must have the genes. All of my mother's paternal aunts had dementia and my mother had AD and passed at age 85. I was her caregiver for the last 7-8 years of her life. So, for me and my 4 siblings, we knew this could be on the horizon. However, seeing the genetic markers and reading what they actually meant, still has served a blow. I guess that I had hope that I skipped that gene pool. Anyhow, I have the 4/4 and I am going to be 52 in a month. I feel like I have been dealing with memory decline for some time now, but everyone says it's because I'm so busy. I am a working, mother of 2, and I helped to care for my mother in law who died of cancer and my mom of course prior to her death 3 years ago. So, now it's me that I need to care for. I still have a 15 year old at home. She suffers with mental illness issues and now that I know she likely carries this gene as well and her Dad probably has passed down some cancer genes, I think I have to keep this under wraps with her. She is depressed about enough at this point.
I am in the throws of menopause and have been dieting for over a solid year. And, I can't lose more than a few pounds that I seem to add back on with one good cheat meal. My metabolism is just not working. I mostly do an Atkins type of diet with low carb, high protein, so that won't be a huge stretch for me. I do eat red meat, so probably need to cut that down. My BMI is high. I'm short and stocky. I went on the 30 day whole food diet recently and only lost 3 pounds, that I added back as soon as I reintroduced dairy. But, the 3 pound loss just didn't seem like anything to me for everything that I had to cut out to get to that point, no legumes, no peanuts, no dairy in addition to the no sugars, breads, carbs that I'm already used to. My sleep is not great, but I attribute that to hot flashes of menopause. I'm really feeling like a mess right now, but I want to do what I need to do.
I saw first hand my Mom's decline and now I wish we had been better with her diet. She did love chocolate and we hated to deny her when it was such a small thing to bring her joy. As she was in her 80's, the weight just kept going up. We continually were adjusting thyroid meds for her, but it didn't seem to help. She ended up dying of a bad gallbladder. Her gastrointestinal issues were her biggest problems those last years and her Namenda and Galantamine seemed to stabilize her brain to a very slow decline. She probably was on those meds for about 10 years or more. Anyway, I'm glad I found this site and I look forward to all of the information that you share. I mentioned I have 4 siblings and we are all worried about this disease that took our Mom's memory. One sister is trying to get into a study now and I have invited her here as well.

Hi Carol,
Welcome to apoe4.info we are glad you have found us!
I am sorry to hear you and your family are struggling with health issues.

I am glad that you take the brains symptoms you have been experiencing very seriously.
They might be an important cue your body is trying to communicate. In regardless to your genetic status as Dr. Bredesen, the author of "The End of Alzheimer's ", and many members on this forum show, a lot still can be done.
I am convinced that you can “fix your brain” and the body!

To start, I would like to point you to the PRIMER. It is a resource with a comprehensive overview on everything we in detail discuses on the forum. You will find in the PRIMER easily digestible scientific information about Apoe4 allele as well as information on important biomarkers to check, supplements to consider and prevention strategies you can consider applying to your lifestyle right away.
It seems that you are already doing a lot when it comes to your diet. You might need to tailor it even more to your unique biochemistry once you start collecting your first biomarkers.
As for sleep, you are right It is crucial for brain health. To help you improve your sleep and learn in detail why is It important please take a look at our Wiki page SLEEP.

Thank you for sharing your story with us! I would like to you to know that if at any part of your journey more questions arise we are here to help!

Magda
Functional Medicine Certified Health Coach & MS Clinical Nutrition Student
IFM/Bredesen Trained, Reversing Cognitive Decline
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CoachMT
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Re: New member here from Georgia, USA

Post by CoachMT »

cbow wrote:Hi,
I am Carol and I happened upon this site while trying to read my raw DNA data from 23andme. I have been researching my family history for years and really didn't realize that my DNA for ancestry was going to yield me this scary information. I knew that I must have the genes. All of my mother's paternal aunts had dementia and my mother had AD and passed at age 85. I was her caregiver for the last 7-8 years of her life. So, for me and my 4 siblings, we knew this could be on the horizon. However, seeing the genetic markers and reading what they actually meant, still has served a blow. I guess that I had hope that I skipped that gene pool. Anyhow, I have the 4/4 and I am going to be 52 in a month. I feel like I have been dealing with memory decline for some time now, but everyone says it's because I'm so busy. I am a working, mother of 2, and I helped to care for my mother in law who died of cancer and my mom of course prior to her death 3 years ago. So, now it's me that I need to care for. I still have a 15 year old at home. She suffers with mental illness issues and now that I know she likely carries this gene as well and her Dad probably has passed down some cancer genes, I think I have to keep this under wraps with her. She is depressed about enough at this point.
I am in the throws of menopause and have been dieting for over a solid year. And, I can't lose more than a few pounds that I seem to add back on with one good cheat meal. My metabolism is just not working. I mostly do an Atkins type of diet with low carb, high protein, so that won't be a huge stretch for me. I do eat red meat, so probably need to cut that down. My BMI is high. I'm short and stocky. I went on the 30 day whole food diet recently and only lost 3 pounds, that I added back as soon as I reintroduced dairy. But, the 3 pound loss just didn't seem like anything to me for everything that I had to cut out to get to that point, no legumes, no peanuts, no dairy in addition to the no sugars, breads, carbs that I'm already used to. My sleep is not great, but I attribute that to hot flashes of menopause. I'm really feeling like a mess right now, but I want to do what I need to do.
I saw first hand my Mom's decline and now I wish we had been better with her diet. She did love chocolate and we hated to deny her when it was such a small thing to bring her joy. As she was in her 80's, the weight just kept going up. We continually were adjusting thyroid meds for her, but it didn't seem to help. She ended up dying of a bad gallbladder. Her gastrointestinal issues were her biggest problems those last years and her Namenda and Galantamine seemed to stabilize her brain to a very slow decline. She probably was on those meds for about 10 years or more. Anyway, I'm glad I found this site and I look forward to all of the information that you share. I mentioned I have 4 siblings and we are all worried about this disease that took our Mom's memory. One sister is trying to get into a study now and I have invited her here as well.
Warm welcome Carol! We are so pleased that you found the ApoE.4.info site and happy to have you as a member of this active community! This forum is a great place to learn, share, and receive support! Thank you for sharing your own story. Your love and devotion to your family, mother-in-law and your mother in her last years of life is heart-warming, thank you for sharing! You sound like you have been giving to others for many, many years and possibly depleting yourself in the process? Putting some focus on your own self-care and health and wellness sounds great when you said, "its now me that I need to care for".

I can imagine it would be quite a shock to be thinking you were researching your family ancestory and discover your ApoE.4 status along the way! The good news is that science has proven that our genes are not our destiny, and we have the power to turn them on and off the choices we make each day in areas such as diet/nutrition, exercise, sleep, community/relationships, and stress reduction. There are many members on this site who are 4/4 and active, healthy, and not demonstrating signs or biomarkers for cognitive decline or Alzhiemer’s.

If you haven’t seen it already, the primer is a great starting place to learn about the extensive resources available to you on the ApoE4.info site. It was authored by a member physician who carries two copies of the APOE-ε4 allele, is regularly updated and provides information on the science behind the APOE-ε4 allele, tips on diet and lifestyle choices, biomarkers to check, and prevention strategies. I recommend you begin with the primer to expand your knowledge of the resources available, and I suggest you consider where you want to prioritize your focus and actions? For example: Nutrition for optimal brain functioning; Enhancing exercise and frequency to support brain health; Looking for an ApoE-aware Healthcare Practitioners are some examples.

Please keep you posted on how you are doing and don’t hesitate to reach out with questions!
Best,
Mandy
-Certificate for Reversing Cognitive Decline (FMCA)
-Functional Medicine Certified Health Coach (FMCHC)
-National Board Certified- Health and Wellness Coach (NBC-HWC)
Shadepeace2
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Re: New member here from Georgia, USA

Post by Shadepeace2 »

Hi Carol!
I am also a new member from Georgia who recently discovered my 4/4 status! The funny thing is that I did not have Alzheimer’s on my radar at all when I tested via 23&Me. I was looking to see if I had the MTHFR SNP that would point toward poor methylation of B-12. I have always battled a moderate depression and had thrown everything at it except medication (exercise, nutrition, Vitamin D supplementation, my faith, a seasonal affective disorder light in the winter months etc.) I did not want to use medication because I generally will have every obscure side-affect possible to any and all medications. (My 23&Me results confirmed my poor metabolism of many medications)
And since almost everyone on my paternal side of the family takes antidepressants and there is history of suicides, I thought that genetics might be a key factor that I could address. So when the notification regarding Alzheimer’s risk popped up on my results screen, I just blew right by it in full denial to try to get to the information I really wanted that I thought would solve a life-long problem. It took a couple of days for it to sink in fully and for me to recall the relatives on both sides of my family who lived into their 90s and even a couple over 100, but had dementia for the last 20+ years of their lives. I registered it briefly in my mind and even laughed and wondered if that was why I had lost my wallet 2 weeks prior and why I occasionally go into a room and forget why I’m there. But then I rationalized that if that was indicative of Alzheimer’s then I had been symptomatic for many years. LOL! And I set the thought aside again. I had to do some extra work to answer the MTHFR question because 23&Me does not recognize the SNP as being of reportable significance. That meant down-loading the Prometheus database and doing my own investigation. It turns out that I do not have the MTHFR issue, but do have some potential problems with choline and folate metabolism that, if addressed, could possibly improve my mental health. After I shuffled through all of that, the APOE 4/4 revelation finally came home to roost. And then I went into research mode on that. Unfortunately, one of the first sites I clicked on asked the question, “Would you really want to know if you have an incurable fatal disease?” That sent me for a little tailspin. You see, I was recalling all of my Alzheimer’s patients from my 39 year career as an ICU nurse. And my first thought was, “ I do not want to do that to my son.” But that heart-stabbing question does not not also ask “Would you want to know if you have a disease that is incurable if you follow the culture’s historical lifestyle and medical care, but that is showing great promise at having it’s symptoms reversed and possibly prevented when following a comprehensive lifestyle strategy that seeks to eliminate all possible underlying causes?” My answer to the second question is YES!!!
I now consider it a gift from God to have this information so that I can steward my body as faithfully as possible, given all of the current scientific knowledge available. And I do not think it coincidental that I was led to a Ketogenic way of eating 24 months ago. I lost 40 pounds the first year to get to my ideal body weight. Joint pain and insomnia were eliminated. My lab work looked good. My ketones stay up and my blood sugar stays down. I take no medications... just a few vitamin and electrolyte supplements. I love this way of eating and planned to live my life out this way. The only thing that disappointed me was that I did not get the full relief of depression and on-going mental clarity that so many others have reported when in ketosis. Thus the 23&Me testing looking for a possible reason why.
I had done Atkins years ago with temporary successes as far as weight loss. The problem was, I was doing it sloppily with no focus on quality nutrition, just carb counts, and with plans to add more carbs back in as soon as I got to my goal weight. It also did not give me healthy fats, nor eliminate the highly inflammatory processed seed oils and grains or have me looking at eliminating sugar. I was just eating less of the junk. And it emphasized protein over quality fat. And though it’s controversial, it is thought that too much protein causes gluconeogenesis, meaning that sugar is formed from protein and can potentially be stored as fat especially if blood sugar and insulin levels are not optimum.
So, where I am at is in the pursuit of following the Bredesen Protocol in order to hit all of the currently known preventative strategies. I know that there is information on this site about the protocol. And there are quite a few podcast interviews and YouTube videos etc. describing it. And I bought the summary of his book on Amazon, entitled “The End of Alzheimer’s” by Dale Bredesen, which is an outline of the protocol. There is also a way to enroll in their Recode program. It is pricey (but may be a bargain compared to trying to do things on your own... I don’t know.) I feel like I’m blessed to be a little bit ahead of the curve because I have been researching all things nutrition, especially ketosis, which is thought to be of great benefit to the Alzheimer’s brain and have been in ketosis for over 2 years (I’m 59). I thought it funny to be going back through all of the notes in my nutrition journal for the past 3 year ( I researched for 6 months before I started the Ketogenic diet). In my journal were multiple notations about Alzheimer’s, but I would have told you prior to knowing about my 4/4 status that I had absolutely no interest in that area. Now I’m seeing it everywhere along my journey.
I have finally found an MD on my insurance plan who also has integrative medicine training who will more likely be willing to help me follow the protocol. But she does not have an opening for an appointment until August! Ughh! So yesterday, I paid out of pocket to have a bunch of labs drawn that I do not think should wait until August. Ka-Ching! I know that I have an advantage as a critical care nurse who likes to research and has already been doing some aspects of the protocol. And who understands the lab results. I even inquired with the Recode folks if I could get a pro-rated fee for having some of my testing already completed. I didn’t get a direct “No” but I think they stick to their two options of a preventative program for those without cognitive decline symptoms and a reversal program that costs a little more for those with cognitive issues and don’t really do hybrid plans. So I’m hoping that my doctor will be Bredesen trained or at least familiar with it. I have saved a continuing medical education course that is available for MDs in my notes in case she could use it. (My poor doctor when she has to deal with me. LOL! )
And I will be looking closely at my NMR-Lipid profile to see if I have to make changes in the fats in my diet. And possibly getting a coronary calcium scan to check for disease in my arteries since this genetic profile increases our risk for heart disease and might change the way we handle fats compared to others.
I am not rolling in the coin, so every test is a measured decision. But I told myself that I would certainly fork over the money to replace an appliance when I had to, so why was I agonizing so over spending money on my health. And some of these essential tests are ones that I have NEVER had checked in my life. That’s a sad commentary on the state of preventative medicine in this country... and probably most countries.
I will stop rambling at you. I know it’s like being caught in a whirlwind at first when taking in all of this information. Just know that we are not doomed to go out of this world with Alzheimer’s. We are pioneers at the forefront of turning this thing around. And allowing ourselves to become stressed out over this will just compound our potential problem. There are things you can do. Some of them are actually pretty basic. If you haven’t already, my first action would be to optimize nutrition to get rid of sugars and all of the seed oils/vegetable oils and processed foods. And look into whether or not a Ketogenic way of eating would be possible for you. It does require more cooking, but I really think that I’ve saved money in the long run and have gotten my system down to where it doesn’t take up a huge amount of time.
I’m so appreciative of this site and that I get to do this journey with folks like you. Let’s take all of that energy that tries to paralyze us in fear and use it to kick this thing right out of our lives and blaze a trail for those behind us so that this Alzheimer’s thing will just be something in the history books. I look forward to speaking to you again, neighbor... Ya’ll :)
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Sara
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Re: New member here from Georgia, USA

Post by Sara »

Greetings cbow and welcome to the apoe4.info site and thank you for sharing you journey with us! You have such an interesting and motivating story and are advanced in so many areas. Please continue to share with us and let us know how we might be of service to you. Would love to have you check out our Primer, written by our physician, Stavia. The Primer is a fantastic resource exploring the science behind the apoe4 gene and the lifestyle factors that impact its expression. Looking forward to your continued contributions and again a warm welcome!
Certified ReCODE 2.0 Brain Health Coach, MOCA Certified
MBA, Functional Medicine Certified Health Coach, National Board Certified Health & Wellness Coach
Brain Health Professional - Amen University
Surviving loved one who transitioned with AD
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Davida
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Re: New member here from Georgia, USA

Post by Davida »

Shadepeace2 wrote:Hi Carol!
I am also a new member from Georgia who recently discovered my 4/4 status! The funny thing is that I did not have Alzheimer’s on my radar at all when I tested via 23&Me. I was looking to see if I had the MTHFR SNP that would point toward poor methylation of B-12. I have always battled a moderate depression and had thrown everything at it except medication (exercise, nutrition, Vitamin D supplementation, my faith, a seasonal affective disorder light in the winter months etc.) I did not want to use medication because I generally will have every obscure side-affect possible to any and all medications. (My 23&Me results confirmed my poor metabolism of many medications)
First off, let me welcome you to the Apoe4 community Shadepeace2!

What a story you share. I noticed you are not asking any particular questions but merely responding to Carol's post. I have to say, I so enjoy your openness, humor, eagerness, positivity, intelligence, gratitude and trail blazer attitude. I would never have guessed a battle with depression. I'm sorry to hear of your struggle and that of your family's.

You certainly have done your research and know your body. I think any physician would be thrilled to have a patient so knowledgeable and willing to do the work. I'm glad you were able to find someone on your insurance plan. That so often is not the case. Is it possible to be put on their call back list to be seen sooner if there is a cancellation??

This is a great forum with incredible supporters who continually add and update information. The Primer has a wealth of scientific information on the Apoe4 gene as well as prevention strategies. And theWiki as you may know as well provides more in-depth information on topics that may interest you, even possible research studies to participate in.

Thank you again for sharing your story and we look forward to hearing more of your journey.

By the way, your son is very lucky to have such an insightful mom.

Be well,

Davida
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Shadepeace2
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Re: New member here from Georgia, USA

Post by Shadepeace2 »

Thank you, Davida!
I have gazoodles of questions, especially as I am processing my recent lab results. I have been gratefully utilizing this site like crazy to wrap my head around some of the more complicated topics like lipids and methylation. Fortunately, I already had some familiarity with these topics from my 3 year trek into obsessively investigating all things nutrition, especially ketosis, as well as biohacking ideas/theories/science. Believe me, you will be hearing from me when I have collated all of this info well enough to know what I want to ask. LOL!
Thank you so much to all who labor here at this site to support their fellow genetic travelers and pioneers!
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Re: New member here from Georgia, USA

Post by Julie G »

Hey, Georgia peeps! I lived in Athens, GA for 20 years prior to moving back to the shores of Lake Michigan. Athens was a gem; the BEST music, restaurant, and tailgating town ever. It’s wonderful to have you join us.
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Re: New member here from Georgia, USA

Post by Shadepeace2 »

Thanks, Julie!
My son has a half-brother and sister in Athens. It’s a cool town.
Sorry so late to respond. Still getting the hang of this vast site. I’m on nerd overload with all of my various tangents!! Today’s spelunking topics include the intricacies of thyroid panels, the accuracy and worth of various methods of iodine testing, and the conflicting viewpoints on lipid panel results for those living long-term Keto with 4/4. Every time I think I have an area nailed down, I come across some new data. Head spin much??!
I decided to back away from the devices and get outside for some exercise in this beautiful day. That step on the protocol is pretty clear cut and undisputed...So far :)
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