New to Site and Seeking Guidance

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
NatureLover
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New to Site and Seeking Guidance

Post by NatureLover »

Hi All,

I recently learned about my e4/e4 status. I am still on the rollercoaster of some days believing my vision for my future is now vastly different, versus other days where I think I can potentially stave off the onset of Alzheimer's. I am in research mode, which is exhausting, and can increase my worry--especially when I read about the degradation of the blood-brain barrier in people with this status.

Here are the initial steps I have taken, and welcome any input and additional guidance:

1. I have begun following a diet based upon Dr. Gundry's lectin-free protocol, and am still struggling to get a baseline of recipes so I am not eating the same foods over and over. I also fast for about 14 hours a day (prior to bed into late morning).

2. I have documented all of the recommended labs, but am unsure about the most efficient, confidential, and cost-effective route to get these completed. I was considering asking my doctor if she'd submit these and see if insurance will pay. I am also worried about my insurance company finding out about my status, and do not plan on telling my doctor immediately. I do plan on connecting with a doctor who is familiar with the Gundry protocols, but have had difficulty locating one. I live in the Seattle area.
Here are the labs that I understand I should get to obtain a baseline and adjust my protocol:

- sdLDL-C
- oxLDL
- Triglyceride/HDL-C ratio
- Homocysteine level (I am heterozygous for the C677)
- Thyroid anti-bodies (I do have Hashimoto's but have never needed synthetic thryoid, but they typically do not test for the anti-bodies)
- C-Reactive Protein
- Vitamin D level
* However, I have also seen a Dr. Gundry lab panel that covers most of the insulin, cholesterol, and lipid testing all together, so perhaps this is the most efficient route? https://www.ultalabtests.com/Shop/Items ... Test-Panel
- Lpa - I do have one copy of the Factor V Leiden gene with a history of significant strokes in family members as they age

3. Daily Supplements/meds I've started include:

- Valacyclovir 500 mg 1 x daily suppressant dose to combat an HSV1 infection that recently emerged with the onset of pre-menopause
- Daily baby aspirin (If I need to take Ibuprofin for headache/neck pain then I don't take the baby aspirin)
- Nordic Naturals 1,000 mg Omega 3 + 400 mg Optimized Curcumin (EPA 490 mg, DHA 350 mg)
- Life Extension Optimized NAD Cell Regenerator with Resveratrol
- Vitamin D3, 125 mcg
- Life Extension Optimized Folate 1000 mcg
- Vitamin B12 1000 mcg
- Thorne Niacinamide 500 mg - 2 x daily
- Magnesium Citrate 400 mcg
- Life Extension Pomegranate Extract (400 mg POMELLA, 100 mg pomegranate extract)

4. I also plan on purchasing the Keto-Mojo to test my ketones and blood sugar frequently. I have a close family member who developed diabetes at my age, so also need to identify if there is an at-home method for me to test my insulin resistance?

5. Excercise: I try to exercise most days anywhere from 30-50 minutes on an elliptical. I also work to get 10,000 steps in daily outside of this. I have been careful not to work out too hard as I previously tended to do after reading about the fragility of the APOE4 gene, especially regarding the vascular system.

I welcome any guidance about these protocols or additional steps I should consider. I feel as though I am a ticking time bomb given that I have two very close relatives who were afflicted with cognitive decline. One started to develop symptoms in his forties (maybe younger). He was a football player from age 9 to 20 (collegiate) so likely experienced many head injuries. He then became what many term a functional alcoholic, but after he passed away around age 60 from cognitive deficits, most of us didn't learn that he was covering up significant cognitive deficits decades earlier. He was never tested for Alzheimer's as they assumed it was alchoholism, but he essentially died of cognitive decline. His sister was recently diagnosed with Alzheimer's in her mid-70's, but it is also believed she has experienced years of cognitive deficits up to this point, but was able to hide it well also until it reached a tipping point.

Lastly, I am still confused about whether coconut milk (regular or lite) is optimal for people with the e4/e4 status. I also saw some recipes on the site with coconut oil, but heard that Dr. Gundry no longer recommends coconut oil for those with our status, but there was no comment from him when someone asked about coconut milk.

Thank you,
NF52
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Re: New to Site and Seeking Guidance

Post by NF52 »

NatureLover wrote:Hi All,

I recently learned about my e4/e4 status. I am still on the rollercoaster of some days believing my vision for my future is now vastly different, versus other days where I think I can potentially stave off the onset of Alzheimer's...
I feel as though I am a ticking time bomb given that I have two very close relatives who were afflicted with cognitive decline. One started to develop symptoms in his forties (maybe younger). He was a football player from age 9 to 20 (collegiate) so likely experienced many head injuries... His sister was recently diagnosed with Alzheimer's in her mid-70's, but it is also believed she has experienced years of cognitive deficits up to this point, but was able to hide it well also until it reached a tipping point...
A warm welcome, NatureLover!

Being on a rollercoaster after recently learning of your 4/4 status is called "normal" by those of us who took that ride, and have since been able to find a way to not feel like a "ticking time bomb". Since you mentioned the onset of pre-menopause, I'll assume you're somewhere between about 45 and 50, with apologies if I'm way off! The good news is that while pre-and peri-menopause can cause many of the symptoms that make us feel like our brains will never again be at peak performance, managing those symptoms with the help of a good healthcare provider, and time itself, can make an enormous difference. At 52 (a year before official menopause) I felt truly foggy most days, and wondered what was happening to my brain. It didn't help that I had a relative with unacknowledged dementia and the normal stresses of a career and teens in the house. By 57 the kids were either in or graduated from college, and I was able to give myself a sabbatical to attend a demanding graduate program with people half my age--and do just fine. I wish my 52 year old self could have known that 57 and now almost 67 would be times of continued learning, opportunities to challenge myself and no cognitive issues!

From your list of strategies, it looks like you have already absorbed much of the great advice of our resident medical expert, herself a practicing physician with ApoE 4/4. You can see her humor and wisdom on how to cope and what to do here: Primer

You can also find deep dives into research and compilations of users' ideas on our Wiki

I will also offer some reassurance about your risk based on your relatives. The football player who showed symptoms in his 40's with additional risk from alcohol, which he may have used as self-medication, sounds like a possible case of Chronic Traumatic Encephalopathy (CTE), which is an entirely different disease process and presentation than Alzheimer's disease, the risk associated with ApoE 4. CTE is due to widespread, recurrent injury to the entire brain, and shows up younger and with more emotional and behavioral symptoms. I had the privilege of speaking with many current researchers in traumatic brain injury and Alzheimer's in November as a consumer participant in a panel recommending grant applications for the Department of Defense. They were clear in their belief that while football players can develop late-life AD like anyone else, those with CTE are experiencing a different disease.

His sister, who developed symptoms in her 70's, may or may not have had ApoE 4. An estimated 10-15% of people currently ages 60-75 are at risk of either Mild Cognitive Impairment (MCI) or AD by age 85 (compared to an estimated risk for people with 4/4 at MY AGE (not yours) of 30-55%). It's likely though, that she could have had unrecognized, or unmanaged high blood pressure, diabetes, coronary artery disease, limited opportunities for early education and lifetime cognitive challenges that lowered her ability to be resilient to risk factors.

You seem to be doing a wonderful job of empowering yourself and living a full life. Believe in the future as you want to create it!
4/4 and still an optimist!
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SamNZ
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Re: New to Site and Seeking Guidance

Post by SamNZ »

NatureLover wrote:Hi All,

I recently learned about my e4/e4 status. I am still on the rollercoaster of some days believing my vision for my future is now vastly different, versus other days where I think I can potentially stave off the onset of Alzheimer's. I am in research mode, which is exhausting, and can increase my worry--especially when I read about the degradation of the blood-brain barrier in people with this status.

Here are the initial steps I have taken, and welcome any input and additional guidance:

1. I have begun following a diet based upon Dr. Gundry's lectin-free protocol, and am still struggling to get a baseline of recipes so I am not eating the same foods over and over. I also fast for about 14 hours a day (prior to bed into late morning).

2. I have documented all of the recommended labs, but am unsure about the most efficient, confidential, and cost-effective route to get these completed. I was considering asking my doctor if she'd submit these and see if insurance will pay. I am also worried about my insurance company finding out about my status, and do not plan on telling my doctor immediately. I do plan on connecting with a doctor who is familiar with the Gundry protocols, but have had difficulty locating one. I live in the Seattle area.
Here are the labs that I understand I should get to obtain a baseline and adjust my protocol:

- sdLDL-C
- oxLDL
- Triglyceride/HDL-C ratio
- Homocysteine level (I am heterozygous for the C677)
- Thyroid anti-bodies (I do have Hashimoto's but have never needed synthetic thryoid, but they typically do not test for the anti-bodies)
- C-Reactive Protein
- Vitamin D level
* However, I have also seen a Dr. Gundry lab panel that covers most of the insulin, cholesterol, and lipid testing all together, so perhaps this is the most efficient route? https://www.ultalabtests.com/Shop/Items ... Test-Panel
- Lpa - I do have one copy of the Factor V Leiden gene with a history of significant strokes in family members as they age

3. Daily Supplements/meds I've started include:

- Valacyclovir 500 mg 1 x daily suppressant dose to combat an HSV1 infection that recently emerged with the onset of pre-menopause
- Daily baby aspirin (If I need to take Ibuprofin for headache/neck pain then I don't take the baby aspirin)
- Nordic Naturals 1,000 mg Omega 3 + 400 mg Optimized Curcumin (EPA 490 mg, DHA 350 mg)
- Life Extension Optimized NAD Cell Regenerator with Resveratrol
- Vitamin D3, 125 mcg
- Life Extension Optimized Folate 1000 mcg
- Vitamin B12 1000 mcg
- Thorne Niacinamide 500 mg - 2 x daily
- Magnesium Citrate 400 mcg
- Life Extension Pomegranate Extract (400 mg POMELLA, 100 mg pomegranate extract)

4. I also plan on purchasing the Keto-Mojo to test my ketones and blood sugar frequently. I have a close family member who developed diabetes at my age, so also need to identify if there is an at-home method for me to test my insulin resistance?

5. Excercise: I try to exercise most days anywhere from 30-50 minutes on an elliptical. I also work to get 10,000 steps in daily outside of this. I have been careful not to work out too hard as I previously tended to do after reading about the fragility of the APOE4 gene, especially regarding the vascular system.

I welcome any guidance about these protocols or additional steps I should consider. I feel as though I am a ticking time bomb given that I have two very close relatives who were afflicted with cognitive decline. One started to develop symptoms in his forties (maybe younger). He was a football player from age 9 to 20 (collegiate) so likely experienced many head injuries. He then became what many term a functional alcoholic, but after he passed away around age 60 from cognitive deficits, most of us didn't learn that he was covering up significant cognitive deficits decades earlier. He was never tested for Alzheimer's as they assumed it was alchoholism, but he essentially died of cognitive decline. His sister was recently diagnosed with Alzheimer's in her mid-70's, but it is also believed she has experienced years of cognitive deficits up to this point, but was able to hide it well also until it reached a tipping point.

Lastly, I am still confused about whether coconut milk (regular or lite) is optimal for people with the e4/e4 status. I also saw some recipes on the site with coconut oil, but heard that Dr. Gundry no longer recommends coconut oil for those with our status, but there was no comment from him when someone asked about coconut milk.

Thank you,
Hi Naturelover, so lovely to have you join our community, I hope you find lots of answers to your questions . I appreciate that getting the e4/e4 status can be a great concern, but you seem well on your way to realising that you can help prevent the onset of cognitive impairment with lifestyle. I appreciate there is so much to take in. If you were wanting more general guidance there are 2 key sources of information on practitioners that may be a good place to start, the Wiki page has a list of practitioners Searching for a healthcare practitioner or an IFM practitioner could be a good start, IFM practitioners in SeattleDianna Minich is probably the most well known and I suspect her clinic could tell you easily who specialises in AD in this field. As a health coach my best advice for you is to break all the information you are gathering and just focus on one thing at a time to stop you feeling so overwhelmed. Feel free to ask any questions you have, the team here can really offer some amazing support. SamNZ
Samantha McBride
Functional Medicine Certified Health Coach
mike
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Re: New to Site and Seeking Guidance

Post by mike »

NatureLover wrote:4. I also plan on purchasing the Keto-Mojo to test my ketones and blood sugar frequently. I have a close family member who developed diabetes at my age, so also need to identify if there is an at-home method for me to test my insulin resistance?

5. Excercise: I try to exercise most days anywhere from 30-50 minutes on an elliptical. I also work to get 10,000 steps in daily outside of this. I have been careful not to work out too hard as I previously tended to do after reading about the fragility of the APOE4 gene, especially regarding the vascular system.
There are not really good ways of measuring insulin resistance. Folks mostly measure Blood Sugar, since that will relate to IR, though the brain maintains its own IR separate from the body IR, so it all gets complicated. Where did you read about the "fragility of the APOE4 gene"? From what I've read, you should do as much exercise as your doctor says you can. I would try to add some resistance training as well.
Sonoma Mike
4/4
Fiver
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Re: New to Site and Seeking Guidance

Post by Fiver »

Welcome to the roller coaster ;) Some thoughts below.

Valacyclovir 500 mg 1 x daily suppressant dose to combat an HSV1 infection that recently emerged with the onset of pre-menopause

There is good evidence that addressing this is a good thing to do and lowers risk.


Daily baby aspirin (If I need to take Ibuprofin for headache/neck pain then I don't take the baby aspirin)

My understanding is that baby aspirin is no longer recommended to prevent heart disease. Just worth considering. Maybe there are other reasons.

- Life Extension Optimized NAD Cell Regenerator with Resveratrol
- Thorne Niacinamide 500 mg - 2 x daily

Are you getting a double-dose of anything in these two supplements?

Best of luck with your research. Welcome to the site. :)
NatureLover
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Re: New to Site and Seeking Guidance

Post by NatureLover »

Dear Fiver,

Thank you so much for your enquiry about the Niacin. I had read that they were two different forms of B3, so now I am worried that I may be taking too much overall. I have tried to do some additional research and am not seeing that they definitively cannot be taken together, but I do want to be smart about the supplements.

Thank you,
NatureLover
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Re: New to Site and Seeking Guidance

Post by NatureLover »

SamNZ wrote:
NatureLover wrote:Hi All,

I recently learned about my e4/e4 status. I am still on the rollercoaster of some days believing my vision for my future is now vastly different, versus other days where I think I can potentially stave off the onset of Alzheimer's. I am in research mode, which is exhausting, and can increase my worry--especially when I read about the degradation of the blood-brain barrier in people with this status.

,
Hi Naturelover, so lovely to have you join our community, I hope you find lots of answers to your questions . I appreciate that getting the e4/e4 status can be a great concern, but you seem well on your way to realising that you can help prevent the onset of cognitive impairment with lifestyle. I appreciate there is so much to take in. If you were wanting more general guidance there are 2 key sources of information on practitioners that may be a good place to start, the Wiki page has a list of practitioners [url-https://wiki.apoe4.info/wiki/Main_Page# ... actitioner]Searching for a healthcare practitioner[/url] or an IFM practitioner could be a good start, [url-https://www.ifm.org/find-a-practitioner ... guages=IFM ]IFM practitioners in Seattle[/url]Dianna Minich is probably the most well known and I suspect her clinic could tell you easily who specialises in AD in this field. As a health coach my best advice for you is to break all the information you are gathering and just focus on one thing at a time to stop you feeling so overwhelmed. Feel free to ask any questions you have, the team here can really offer some amazing support. SamNZ
Thank you very much for the information about searching for practitioners, and for your encouraging thoughts. I will look into these resources.

Best,

NatureLover
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Re: New to Site and Seeking Guidance

Post by NatureLover »

Dear NF52,

Thank you so much for responding to my enquiry so quickly. I really appreciate the supportive comments, and the links to Stavia's Primer.

Best,

NatureLover
NF52 wrote:
NatureLover wrote:Hi All,

I recently learned about my e4/e4 status. I am still on the rollercoaster of some days believing my vision for my future is now vastly different, versus other days where I think I can potentially stave off the onset of Alzheimer's...
I feel as though I am a ticking time bomb given that I have two very close relatives who were afflicted with cognitive decline. One started to develop symptoms in his forties (maybe younger).
A warm welcome, NatureLover!

Being on a rollercoaster after recently learning of your 4/4 status is called "normal" by those of us who took that ride, and have since been able to find a way to not feel like a "ticking time bomb".
From your list of strategies, it looks like you have already absorbed much of the great advice of our resident medical expert, herself a practicing physician with ApoE 4/4. You can see her humor and wisdom on how to cope and what to do here: Primer
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Re: New to Site and Seeking Guidance

Post by slacker »

Naturelover;

Stavia has a list of tests that can help determine insulin resistance in her primer. I do not think that there is a home insulin test available at this time.

We have a wiki chapter on Dr Gundry that may be helpful for you.
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Re: New to Site and Seeking Guidance

Post by Plumster »

I welcome any guidance about these protocols or additional steps I should consider.
Hi Nature Lover,

Dr. Gundry's book is not very well received by the scientific community. You can read a very, very thorough and long review of his book The Plant Paradox on this review site by led scientists who examine the scientific accuracy of nutrition books.
https://www.redpenreviews.org/reviews/t ... ight-gain/
Make sure you get lots of whole foods and eat mostly plant based, limiting sugar and processed foods. The rest of your diet depends on your genes, desires, needs and lifestyle.
e3/4 MTHFR C677T/A1298C COMT V158M++ COMT H62H++ MTRR A66G ++ HLA DR
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