Using RAPA for AD prevention

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Brian4
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Re: Using RAPA for AD prevention

Post by Brian4 »

The role of amyloid in sporadic AD is not fully understood. Green could be right, but we simply don't know. But I'm not too worried about this one study. To be safe though, I eat very low cal during first two or three days of taking rapalogs, since that may (reasoning from mechanism – there's zero direct evidence) counteract the ways in which rapamycin could increase amyloid burden (which includes effects not just on TREM2 but also ADAM-10 – but calorie restriction has the opposite effect of rapa on ADAM-10, as well).

But for CR to have this counteracting effect, it might need to be a regular daily practice (because of "epigenetic inertia"). We don't know. So what I'm actually doing is mild CR all the time, then more extreme CR for Days 1–2 or –3 of my rapalog schedule (I'm now experimenting with everolimus, not just rapamycin).

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Re: Using RAPA for AD prevention

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Karina52 wrote: Mon Jan 24, 2022 9:16 am As a 69 year old 4/4 female, I researched the topic of rapamycin extensively, visited with Dr. Green and made the decision 3 months ago, to start rapamycin. I was prescribed 6mg once a week. Started at 4mg/week for one month, and now take 5 mg once a week. Whether I go to 6mg or not remains to be seen as I continue to monitor my labs. I live in the Atlanta area and am fortunate enough to have found a doctor here who is also 4/4, also past 65 and shares my absolute determination to maintain cognitive health. I have had no issues beyond one mouth ulcer which literally appeared within the first 2 hours of my first pill. I treated it with multiple topical Qtip applications of listerine daily and it was gone in 3 days. What is undeniable is more energy, more clarity and an overall sense of wellbeing both physically and emotionally. I'm sold on it.
Hi Karina. I recently received my 23andMe report and, unfortunately, I am a 3/4 carrier. I also live in Atlanta. Can you share the name of your doctor? I am 59 and feel like I have no time to waste in terms of developing a personalized intervention program. Thanks so much.
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Re: Using RAPA for AD prevention

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KathleenC wrote: Fri Jun 30, 2023 10:54 am Hi Karina. I recently received my 23andMe report and, unfortunately, I am a 3/4 carrier. I also live in Atlanta. Can you share the name of your doctor? I am 59 and feel like I have no time to waste in terms of developing a personalized intervention program. Thanks so much.
Hi Kathleen,

Hopefully Karina will respond. This group on rappa lists a doc in the Atlanta area who prescribes rappa. His site.
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Re: Using RAPA for AD prevention

Post by KathleenC »

Thanks so much, Tincup. I'll check out his website.
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Re: Using RAPA for AD prevention

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Hi Kathleen,
The doctor I get my rapamycin prescription from is Dr. Alan Green out of New York. Flew up there for the first visit. Since then it's all virtual visits.
There is a concierge doctor, Randy Smith, right here in Atlanta who is a 4/4. He prescribes it as well but I'm not sure if he orders the compounded ones or if he gives you the script to get capsules. I get the enteric coated pills which I prefer since they have a better chance of getting past stomach acid. There is also a doctor in Southlake Texas, Dr. Jerry Morris, DO who will prescribe rapamycin for you. I think he charges $300 every 6 months to do so. I hope this helps. I am approaching prevention from different angles and so far, at 70 and 4/4, all is wonderful in my world!
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Re: Using RAPA for AD prevention

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KathleenC wrote: Fri Jun 30, 2023 10:54 am
Karina52 wrote: Mon Jan 24, 2022 9:16 am As a 69 year old 4/4 female, I researched the topic of rapamycin extensively, visited with Dr. Green and made the decision 3 months ago, to start rapamycin. I was prescribed 6mg once a week. Started at 4mg/week for one month, and now take 5 mg once a week. Whether I go to 6mg or not remains to be seen as I continue to monitor my labs. I live in the Atlanta area and am fortunate enough to have found a doctor here who is also 4/4, also past 65 and shares my absolute determination to maintain cognitive health. I have had no issues beyond one mouth ulcer which literally appeared within the first 2 hours of my first pill. I treated it with multiple topical Qtip applications of listerine daily and it was gone in 3 days. What is undeniable is more energy, more clarity and an overall sense of wellbeing both physically and emotionally. I'm sold on it.
Hi Karina. I recently received my 23andMe report and, unfortunately, I am a 3/4 carrier. I also live in Atlanta. Can you share the name of your doctor? I am 59 and feel like I have no time to waste in terms of developing a personalized intervention program. Thanks so much.
KathleenC,

Welcome to ApoE4.info! I'm so impressed - As a new user, you found a post of interest, added your thoughts/questions, and even used the quotes in order to alert the previous poster of your comment. I love to see motivated users. Well done! :-)

As a Support Team Intern, I'd like to officially welcome you to the forum. I'll share some tools/resources you can use to explore the site, helping you get the most out of your experience.

The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching. And you already know the great tip of using the quote (") button when replying to a post to alert the member of your response.

If you are interested in learning more about other members, you can check out Our Stories. And maybe you'll tell us more about yourself and your journey.

I'm so glad you joined and look forward to seeing you in more discussions around the forum. Please feel free to reach out anytime.

All the best,

Jane
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KathleenC
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Re: Using RAPA for AD prevention

Post by KathleenC »

Karina52 wrote: Fri Jun 30, 2023 3:42 pm Hi Kathleen,
The doctor I get my rapamycin prescription from is Dr. Alan Green out of New York. Flew up there for the first visit. Since then it's all virtual visits.
There is a concierge doctor, Randy Smith, right here in Atlanta who is a 4/4. He prescribes it as well but I'm not sure if he orders the compounded ones or if he gives you the script to get capsules. I get the enteric coated pills which I prefer since they have a better chance of getting past stomach acid. There is also a doctor in Southlake Texas, Dr. Jerry Morris, DO who will prescribe rapamycin for you. I think he charges $300 every 6 months to do so. I hope this helps. I am approaching prevention from different angles and so far, at 70 and 4/4, all is wonderful in my world!
Thank you so much for getting back to me. I am so glad to hear that all is wonderful in your world. It sounds like the plan you are following is working well. I hope that I can find the same success. I will contact Randy Smith's office next week to better understand his concierge service. If there are any other services or resources that you found helpful in the greater Atlanta area, I would love to hear about them. Thanks again.
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Re: Using RAPA for AD prevention

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Randy Smith's concierge service (last year prices) was $199/month for access to him as needed (all virtual). Then he charges $395 a quarter for the lab work. He sends the phlebotomist to your house and draws blood (and gets urine sample) at your home.
I live up in Roswell, and while I am not currently using Dr. Smith, I have a Dr. who I like because she does any bloodwork I ask her to do. She's also been great with my thyroid issues which are not treatable with the usual Synthroid. Hope this helps :)
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Re: Using RAPA for AD prevention

Post by KathleenC »

Jane S wrote: Fri Jun 30, 2023 4:07 pm
KathleenC wrote: Fri Jun 30, 2023 10:54 am
Karina52 wrote: Mon Jan 24, 2022 9:16 am As a 69 year old 4/4 female, I researched the topic of rapamycin extensively, visited with Dr. Green and made the decision 3 months ago, to start rapamycin. I was prescribed 6mg once a week. Started at 4mg/week for one month, and now take 5 mg once a week. Whether I go to 6mg or not remains to be seen as I continue to monitor my labs. I live in the Atlanta area and am fortunate enough to have found a doctor here who is also 4/4, also past 65 and shares my absolute determination to maintain cognitive health. I have had no issues beyond one mouth ulcer which literally appeared within the first 2 hours of my first pill. I treated it with multiple topical Qtip applications of listerine daily and it was gone in 3 days. What is undeniable is more energy, more clarity and an overall sense of wellbeing both physically and emotionally. I'm sold on it.
Hi Karina. I recently received my 23andMe report and, unfortunately, I am a 3/4 carrier. I also live in Atlanta. Can you share the name of your doctor? I am 59 and feel like I have no time to waste in terms of developing a personalized intervention program. Thanks so much.
KathleenC,

Welcome to ApoE4.info! I'm so impressed - As a new user, you found a post of interest, added your thoughts/questions, and even used the quotes in order to alert the previous poster of your comment. I love to see motivated users. Well done! :-)

As a Support Team Intern, I'd like to officially welcome you to the forum. I'll share some tools/resources you can use to explore the site, helping you get the most out of your experience.

The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching. And you already know the great tip of using the quote (") button when replying to a post to alert the member of your response.

If you are interested in learning more about other members, you can check out Our Stories. And maybe you'll tell us more about yourself and your journey.

I'm so glad you joined and look forward to seeing you in more discussions around the forum. Please feel free to reach out anytime.

All the best,

Jane
Thanks so much, Jane. I appreciate you reaching out to me with tips on navigating the site. It's a wonderful resource but the amount of information is overwhelming for a newbie. Hopefully in a few weeks after I've had time to finish Bredesen's book and delve through the topics here, I'll have a better grip on my options and next steps.
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Re: Using RAPA for AD prevention

Post by KathleenC »

Karina52 wrote: Sat Jul 01, 2023 11:06 am Randy Smith's concierge service (last year prices) was $199/month for access to him as needed (all virtual). Then he charges $395 a quarter for the lab work. He sends the phlebotomist to your house and draws blood (and gets urine sample) at your home.
I live up in Roswell, and while I am not currently using Dr. Smith, I have a Dr. who I like because she does any bloodwork I ask her to do. She's also been great with my thyroid issues which are not treatable with the usual Synthroid. Hope this helps :)
Thanks Karina. This is really helpful information. I live in Roswell as well! Did you use Dr. Smith in the past? If yes, did he serve as your primary care physician? My current PCP is in the Wellstar network and definitely not tied into the functional medicine world. At this point I just want to find the best PCP I can who is tied into alzheimer's prevention and the associated leading edge tests/protocols/research. Perhaps I need a recode coach? I'm still too new at this to know what I don't know. Thanks. Kathleen.
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