Another newbie with a host of questions

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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ppetruccelli
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Another newbie with a host of questions

Post by ppetruccelli »

Hi. My name is Paul, and I recently learned (23&me) that I have one ApoE4 gene. Not a surprise, since I have considerable family history of Alzheimers on my mother's side. Also, I'm 73, and have had enough instances of minor memory struggles (not recalling the name of a city I've visited, or a famous person or the like) to suspect that I'm headed toward MCI in the coming years, and likely LOAD.

I stumbled upon Dr. Bredesen's The End of Alzheimer's. Kinda fascinating. And offering at least some hope. But also kind of insanely overwhelming. I'm in reasonably good shape; BMI normal; walk 1+ hour daily; eat a varied diet with a lot of fruits and vegetables, with dinners consisting of a protein (mostly fish and chicken, very rarely beef) and veggies (rarely any other side dish). So you'd think this would maybe not require that much change in my dietary habits. But the dietary stuff (not to mention the nutritional supplementation stuff) seems so over the top as to be unreachable. Completely eliminate sugar? Really? No diet sodas ever? Never eat another sandwich for lunch (and no substituting soup instead)? Coffee only if it's black, so no more cappuccino? No cheese at all? No processed meat ever (which is ok, I suppose, since I'd have no bread to put it on anyway and no cheese to top it)? No more pasta? Hell, I'm Italian. No more pasta would probably make me persona non grata at family dinners. It's almost as if the ReCODE team asks me to get rid of virtually every food I might find appealing, and instead eat leeks and kale and tree bark all flavored with nutritional supplements with unpronounceable names.

I know, I know. I should be grateful. Because after all, they're offering me a lifeline out of the madness of LOAD. So I should stop whining and man the hell up. But I'm just kind of flabbergasted at the lengths to which they're asking me to go. Which brings me to my questions:

1. Are all of you guys really completely eliminating sugar from your diets? I keep seeing these references like “sugar is poison” and the like. It’s hard to believe our ancestors never let any sweet substances cross their lips. They may not have been producing sugar the way we do today. But I imagine when they figured out what the bees were up to, they didn’t run away screaming. And it’s just hard to believe that my morning serving of Cheerios (dry, with some nuts tossed in) is going to send me down the LOAD sinkhole.
2. Similar question about completely eliminating dairy. And gluten, for that matter. I happen to like pasta. And sandwiches.
3. I guess a better way to ask the above questions is: Is there a less aggressive way to implement this and still get some, or maybe even many, of the benefits of the program? Is there an “n-of-1” way of implementing the program that lets you test out 1 or 2 or 3 important elements, see whether you get significant improvements in some of the measures, and make adjustments from there?
4. Of course, even the “n-of-1” approach would necessitate starting out by measuring all 50 (or however many it is) of the physiological and nutritional parameters outlined in the Bredesen book. Is that what everyone does? That in itself seems like a pretty daunting task. And then I gather you have to re-do the testing on a regular basis to confirm that you’re on track, hitting optimal targets, etc.
5. Is it realistic to think my PCP will be able to counsel me on this? The one time I mentioned my minor memory concerns (given my family history), he basically suggested there was nothing to be done about that. Am I better off searching for a doctor or other health professional who has experience with ReCODE, will be willing to order the specialized array of tests needed, and help me work out a manageable diet and nutrition plan? If so, is it as simple as putting “ReCODE doctors near me” into Google, or is there a more reliable way of locating the right medical support?

Ok, so now that I've managed to offend all of you folks who are diligently following the protocol, and are meanwhile kind and generous enough to read the bilge that whiners like me post on here, let me at least thank you for taking the time to read the above. If you have any suggestions for me (or indeed, if you'd just like to rant back at me), I'll be glad to hear whatever you have to say. As you can see, I'm just at the very beginning of what is likely to be a long journey. And I will no doubt benefit greatly from hearing of your experiences and receiving your suggestions. Thanks again.

Paul
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Re: Another newbie with a host of questions

Post by JD2020 »

ppetruccelli wrote: Tue Sep 17, 2024 5:32 pm
Ok, so now that I've managed to offend all of you folks who are diligently following the protocol,
I am not offended, and I am only following the protocol as much as I am able, which changes from day-to-day. The hardest part for me right now is Brain HQ....

We all have our challenges. The last thing that I am going to give up is my latte, so I get your cappuccino issue. There is an overall issue with the many favorite foods that you listed: glucose control. Cheerios, dairy, pasta, the yummy bread on the sandwich all spike glucose. Perhaps your PCP can prescribe a glucose control meter. Or Google says that the Dexcom Stelo Glucose Biosensor System is over the counter. You will see the impact of what you are eating, and that will be eye opening.

Diet soda is not a food and has no business being in your body. It is pretty much the worst thing on the planet. You have heard the phrase (Michael Pollan, I believe) "Eat food. Not too much. Mostly plants." Read ingredients. Don't put stuff in your body that includes ingredients that your grandmother would not have served to you. Just because it is liquid doesn't mean that it is food. Honestly, that phrase was one of my first guides long ago. All stuff made in a factory is suspicious. Cheerios includes Tripotassium Phosphate. I have no idea what that is, but if you are going to eat Cheerios, you should know what it is.

Gluten - I know. Maybe you're not sensitive to gluten. There's a test for that. I am and still have not totally wrapped my head around what that does, further limiting my food choices.

Yes, the program is insanely overwhelming. I am validating your feelings. I had read the book. I had my first appointment with my ReCode doc. Even though I had an idea as to what was coming, I came home absolutely exhausted and with a bag of testing kits for extra blood tests that the standard labs don't offer. The program is also insanely expensive - the doc, the test kits, the supplements.

Your PCP can't help you. Mainstream medicine does not acknowledge the program, and docs limited by insurance companies do not have the time to provide the direction that you need. This is precision medicine. What are your vulnerabilities? How should those best be addressed? What is the plan to optimize everything else? Those topics can't be covered in that 10 minute appointment.

So, with that as background, to answer your specific questions:

1. Sugar - I am not completely limiting it, but almost.
2. Dairy - the latte is the last to go. Gluten - on my own, eliminated. When I eat it when I am with others, I am taking enzymes. Not sure if those help much.
3. Just get started! Do what you can, and then when that becomes integrated in your life, incorporate the next step.
4. Get with a ReCode doc to narrow those parameters to identify the ones most likely to be relevant to you.
5. Nope, your PCP can't help.

Welcome to the group.
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Re: Another newbie with a host of questions

Post by rdpchef »

ppetruccelli wrote: Tue Sep 17, 2024 5:32 pm Hi. My name is Paul, and I recently learned (23&me) that I have one ApoE4 gene. Not a surprise, since I have considerable family history of Alzheimers on my mother's side. Also, I'm 73, and have had enough instances of minor memory struggles (not recalling the name of a city I've visited, or a famous person or the like) to suspect that I'm headed toward MCI in the coming years, and likely LOAD.

I stumbled upon Dr. Bredesen's The End of Alzheimer's. Kinda fascinating. And offering at least some hope. But also kind of insanely overwhelming. I'm in reasonably good shape; BMI normal; walk 1+ hour daily; eat a varied diet with a lot of fruits and vegetables, with dinners consisting of a protein (mostly fish and chicken, very rarely beef) and veggies (rarely any other side dish). So you'd think this would maybe not require that much change in my dietary habits. But the dietary stuff (not to mention the nutritional supplementation stuff) seems so over the top as to be unreachable. Completely eliminate sugar? Really? No diet sodas ever? Never eat another sandwich for lunch (and no substituting soup instead)? Coffee only if it's black, so no more cappuccino? No cheese at all? No processed meat ever (which is ok, I suppose, since I'd have no bread to put it on anyway and no cheese to top it)? No more pasta? Hell, I'm Italian. No more pasta would probably make me persona non grata at family dinners. It's almost as if the ReCODE team asks me to get rid of virtually every food I might find appealing, and instead eat leeks and kale and tree bark all flavored with nutritional supplements with unpronounceable names.

I know, I know. I should be grateful. Because after all, they're offering me a lifeline out of the madness of LOAD. So I should stop whining and man the hell up. But I'm just kind of flabbergasted at the lengths to which they're asking me to go. Which brings me to my questions:

1. Are all of you guys really completely eliminating sugar from your diets? I keep seeing these references like “sugar is poison” and the like. It’s hard to believe our ancestors never let any sweet substances cross their lips. They may not have been producing sugar the way we do today. But I imagine when they figured out what the bees were up to, they didn’t run away screaming. And it’s just hard to believe that my morning serving of Cheerios (dry, with some nuts tossed in) is going to send me down the LOAD sinkhole.
2. Similar question about completely eliminating dairy. And gluten, for that matter. I happen to like pasta. And sandwiches.
3. I guess a better way to ask the above questions is: Is there a less aggressive way to implement this and still get some, or maybe even many, of the benefits of the program? Is there an “n-of-1” way of implementing the program that lets you test out 1 or 2 or 3 important elements, see whether you get significant improvements in some of the measures, and make adjustments from there?
4. Of course, even the “n-of-1” approach would necessitate starting out by measuring all 50 (or however many it is) of the physiological and nutritional parameters outlined in the Bredesen book. Is that what everyone does? That in itself seems like a pretty daunting task. And then I gather you have to re-do the testing on a regular basis to confirm that you’re on track, hitting optimal targets, etc.
5. Is it realistic to think my PCP will be able to counsel me on this? The one time I mentioned my minor memory concerns (given my family history), he basically suggested there was nothing to be done about that. Am I better off searching for a doctor or other health professional who has experience with ReCODE, will be willing to order the specialized array of tests needed, and help me work out a manageable diet and nutrition plan? If so, is it as simple as putting “ReCODE doctors near me” into Google, or is there a more reliable way of locating the right medical support?

Ok, so now that I've managed to offend all of you folks who are diligently following the protocol, and are meanwhile kind and generous enough to read the bilge that whiners like me post on here, let me at least thank you for taking the time to read the above. If you have any suggestions for me (or indeed, if you'd just like to rant back at me), I'll be glad to hear whatever you have to say. As you can see, I'm just at the very beginning of what is likely to be a long journey. And I will no doubt benefit greatly from hearing of your experiences and receiving your suggestions. Thanks again.

Paul
HI Paul,

I'm one of the welcoming interns and I'm so happy that you are here. I'm Apoe 4/4 so I know how you likely feel. If you don't mind, I'm going to go through your detailed email and comment on specifics so I don't miss anything.
There are also a lot of very experience contributors on the forum that will chime in on topics they are very familiar with.

1. There is a lot of valuable information on Alzheimer's that we are lucky to have, a lot of which is contained in this forum. If it makes you feel better, I cannot remember half of the city names that I've visited just because it isn't that important to me. It may make you take notice if you didn't remember a friends name but If there is something I'd like for you to takeaway is that even at 73 and one copy of Apoe 4, it does not mean that Alzheimer's is your destiny.

2. Dr Bredesen's book is a great resource and yes, overwhelming. Your sense of humor really came through in this paragraph, you had me laughing. We need to laugh or we'll go crazy thinking about all there IS to do, not all that we must do. Whatever protocol you decide to do is your protocol. The best way to approach his book is to take one tiny step at a time, and when that's part of your normal day, then add another. Before you know it, you'll have several new habits. It's also a great habit to celebrate each win. For example, when I get into ketosis each day I give myself a high five. It's surprising how great it makes me feel. How would you celebrate if you gave up bread for a week for example? I'd love to hear your ideas.

3. You can absolutely test 1-3 of the changes then determine how you feel and make changes as you go. Baby steps eliminating one thing at a time and note how you feel; more energetic, less brain fog etc. If so, maybe that food isn't for you or maybe that supplement really helps. It's all about trial and error. I'm unusual in that I gave up sugar, wheat, dairy, caffeine and alcohol in one day. In one week I felt amazing. It was hard over the next few months but that's how I NEEDED to do it for me. We all have to determine what our new normal will be. It was important to me to give up the inflammatory foods that I had eaten so much of in the past. I hope that helps and would love your thoughts on it.

4. I don't think anybody does the same thing. It's very unique to each person. Yes, testing is a great idea so you know exactly where you are starting. You can possibly find yourself a Bredesen Recode practitioner who can help get you off to a good start.

5. Yes, find a functional medicine doctor or a Recode practitioner (maybe they are one in the same). I am always honest about what I'd like to focus on first and what I can afford. If you find a doctor that takes insurance, some not all of the tests may be fully or partially covered and that helps a lot.

I've never met someone who is diligently following everything in that book. I'm sure there are some but i personally don't have the finances to follow every single thing to the T. Again, it's very individual. And it is all about balance.

Here are some links to search for a Recode practitioner and possibly a coach. This would be a good place to start.

Wiki links to Searching for a Healthcare practitioner https://wiki.apoe4.info/wiki/Searching_ ... actitioner; ApoE4-Aware Healthcare Practioners ( https://wiki.apoe4.info/wiki/ApoE4-Awar ... tionersand0 and ApoE4-Aware Health coaches https://wiki.apoe4.info/wiki/ApoE4-Awar ... h_Coaches.

Paul, I'll leave you with this, just so you understand that I'm human. This past July just before my birthday, I was speaking with my FM doctor. I joked that I would really like ice cream on my upcoming birthday. She said, "have ice cream, test it to see how it spikes your glucose". I did it in the name of science. lol. It was the best birthday having ice cream (sugar and dairy) after three years. Flavor? Graeters black raspberry chocolate chunk. I can still taste it.

Paul, I love your energy, you will succeed at this, just don't lose that sense of humor.

Patty
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Re: Another newbie with a host of questions

Post by ppetruccelli »

Hi Patty,

Thanks for your reply and the detailed suggestions. (I wanted to thank JD2020, too, but couldn't figure out how to do a reply to him/her). I'll use those resources to hunt for an FM doc, and see where that takes me. I suppose as long as I don't have to eat the whole elephant I may be able to find a way forward that's workable. An expert + testing first, though, and then I'll go from there. Anyway, thanks again to both you and JD2020 for taking the time and lending me your expertise.

Paul

PS: So did the ice cream bust your glucose meter? C'mon, Patty, inquiring minds want to know!
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Re: Another newbie with a host of questions

Post by NF52 »

ppetruccelli wrote: Wed Sep 18, 2024 1:17 pm Hi Patty,

Thanks for your reply and the detailed suggestions. (I wanted to thank JD2020, too, but couldn't figure out how to do a reply to him/her). I'll use those resources to hunt for an FM doc, and see where that takes me. I suppose as long as I don't have to eat the whole elephant I may be able to find a way forward that's workable. An expert + testing first, though, and then I'll go from there. Anyway, thanks again to both you and JD2020 for taking the time and lending me your expertise.

Paul

PS: So did the ice cream bust your glucose meter? C'mon, Patty, inquiring minds want to know!
Hi Paul,

I'm "quoting" both JD2020 and Patty so that they are sure to be notified by email of your gracious response. The trick is to start with the person's post, click on the quotation mark icon in the upper right of THEIR post, and then type a reply underneath the text of their post.

I also hope that birthday ice cream didn't bust Patty's glucose meter!

Nancy
rdpchef wrote:
JD2020 wrote:
4/4 and still an optimist!
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Re: Another newbie with a host of questions

Post by rdpchef »

NF52 wrote: Wed Sep 18, 2024 1:29 pm
ppetruccelli wrote: Wed Sep 18, 2024 1:17 pm Hi Patty,

Thanks for your reply and the detailed suggestions. (I wanted to thank JD2020, too, but couldn't figure out how to do a reply to him/her). I'll use those resources to hunt for an FM doc, and see where that takes me. I suppose as long as I don't have to eat the whole elephant I may be able to find a way forward that's workable. An expert + testing first, though, and then I'll go from there. Anyway, thanks again to both you and JD2020 for taking the time and lending me your expertise.

Paul

PS: So did the ice cream bust your glucose meter? C'mon, Patty, inquiring minds want to know!
Hi Paul,

I'm "quoting" both JD2020 and Patty so that they are sure to be notified by email of your gracious response. The trick is to start with the person's post, click on the quotation mark icon in the upper right of THEIR post, and then type a reply underneath the text of their post.

I also hope that birthday ice cream didn't bust Patty's glucose meter!

Nancy
rdpchef wrote:
JD2020 wrote:
HI Paul and Nancy,

Thank you Nancy for providing Paul with the information on quoting another member.

Paul, You are very welcome. You already have a positive attitude and that's half the battle. That helps to get us through any day without bread and salami! :D

You might look into joining the Apollo Recode or Precode programs. You can see what tests come with each program. I've heard Dr. Bredesen say that if you have 4/4 you should do the Recode program. I would compare those tests with the tests that a functional medicine doctor may want to start with so you aren't duplicating efforts.

And NO, the ice cream did not break the meter. I wish it had but I did eat it after a large salad so I had a lot of fiber in me. Had I eaten it alone, I'm guessing the result would be different.

Happy to chime in on other subjects, as are others with experience that I don't have. It's a fantastic sharing and safe space.

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Re: Another newbie with a host of questions

Post by ppetruccelli »

Patty, just to make sure I'm clear on this stuff, when you say "4/4," are you referring to someone with two E4 genes, or just one? I am the latter, although I know there are plenty of folks who have two of the genes. Thx.

Paul
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Re: Another newbie with a host of questions

Post by rdpchef »

ppetruccelli wrote: Wed Sep 18, 2024 3:11 pm Patty, just to make sure I'm clear on this stuff, when you say "4/4," are you referring to someone with two E4 genes, or just one? I am the latter, although I know there are plenty of folks who have two of the genes. Thx.

Paul
HI Paul,
Yes I am referring to two genes of the Apoe4. I should probably say homozygous.
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Re: Another newbie with a host of questions

Post by Plumster »

ppetruccelli wrote: Tue Sep 17, 2024 5:32 pm Hi. My name is Paul, and I recently learned (23&me) that I have one ApoE4 gene. Not a surprise, since I have considerable family history of Alzheimers on my mother's side. Also, I'm 73, and have had enough instances of minor memory struggles (not recalling the name of a city I've visited, or a famous person or the like) to suspect that I'm headed toward MCI in the coming years, and likely LOAD.

I stumbled upon Dr. Bredesen's The End of Alzheimer's. Kinda fascinating. And offering at least some hope. But also kind of insanely overwhelming. I'm in reasonably good shape; BMI normal; walk 1+ hour daily; eat a varied diet with a lot of fruits and vegetables, with dinners consisting of a protein (mostly fish and chicken, very rarely beef) and veggies (rarely any other side dish). So you'd think this would maybe not require that much change in my dietary habits. But the dietary stuff (not to mention the nutritional supplementation stuff) seems so over the top as to be unreachable. Completely eliminate sugar? Really? No diet sodas ever? Never eat another sandwich for lunch (and no substituting soup instead)? Coffee only if it's black, so no more cappuccino? No cheese at all? No processed meat ever (which is ok, I suppose, since I'd have no bread to put it on anyway and no cheese to top it)? No more pasta? Hell, I'm Italian. No more pasta would probably make me persona non grata at family dinners. It's almost as if the ReCODE team asks me to get rid of virtually every food I might find appealing, and instead eat leeks and kale and tree bark all flavored with nutritional supplements with unpronounceable names.

I know, I know. I should be grateful. Because after all, they're offering me a lifeline out of the madness of LOAD. So I should stop whining and man the hell up. But I'm just kind of flabbergasted at the lengths to which they're asking me to go. Which brings me to my questions:

1. Are all of you guys really completely eliminating sugar from your diets? I keep seeing these references like “sugar is poison” and the like. It’s hard to believe our ancestors never let any sweet substances cross their lips. They may not have been producing sugar the way we do today. But I imagine when they figured out what the bees were up to, they didn’t run away screaming. And it’s just hard to believe that my morning serving of Cheerios (dry, with some nuts tossed in) is going to send me down the LOAD sinkhole.
2. Similar question about completely eliminating dairy. And gluten, for that matter. I happen to like pasta. And sandwiches.
3. I guess a better way to ask the above questions is: Is there a less aggressive way to implement this and still get some, or maybe even many, of the benefits of the program? Is there an “n-of-1” way of implementing the program that lets you test out 1 or 2 or 3 important elements, see whether you get significant improvements in some of the measures, and make adjustments from there?
4. Of course, even the “n-of-1” approach would necessitate starting out by measuring all 50 (or however many it is) of the physiological and nutritional parameters outlined in the Bredesen book. Is that what everyone does? That in itself seems like a pretty daunting task. And then I gather you have to re-do the testing on a regular basis to confirm that you’re on track, hitting optimal targets, etc.
5. Is it realistic to think my PCP will be able to counsel me on this? The one time I mentioned my minor memory concerns (given my family history), he basically suggested there was nothing to be done about that. Am I better off searching for a doctor or other health professional who has experience with ReCODE, will be willing to order the specialized array of tests needed, and help me work out a manageable diet and nutrition plan? If so, is it as simple as putting “ReCODE doctors near me” into Google, or is there a more reliable way of locating the right medical support?

Ok, so now that I've managed to offend all of you folks who are diligently following the protocol, and are meanwhile kind and generous enough to read the bilge that whiners like me post on here, let me at least thank you for taking the time to read the above. If you have any suggestions for me (or indeed, if you'd just like to rant back at me), I'll be glad to hear whatever you have to say. As you can see, I'm just at the very beginning of what is likely to be a long journey. And I will no doubt benefit greatly from hearing of your experiences and receiving your suggestions. Thanks again.

Paul
Hi Paul,

I am whole foods plant based and low fat. I eat whole grains and, yes, I eat sugar. I use plant-based dairy. My lipid and glucose numbers are good. I wouldn't worry as much as you are. Your diet sounds decent--as long as your labs confirm that you are not consuming too much saturated fat or sugar.
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Re: Another newbie with a host of questions

Post by ppetruccelli »

Thanks for the encouragement. As you suggest, I'll have a better sense of it once I get the resting done.

Paul
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