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Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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PDW
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New member

Post by PDW »

Hi everyone! I’m a 64 year old female who is 4/4. I found out about a year ago through 23andme. My mom and her 3 sisters had Alzheimer’s and I have had one male 1st cousin and 1 female 1st cousin who have it. My mom started with MCI in her late 50s and progressed rapidly to total impairment. She lived to be 81 and was in skilled care and 100% bed ridden the last 10 years of her life. Since finding out my status, my biggest challenge has been dealing with the medical community. For many years, I was discouraged by my primary doc from being tested. When I got my results I was able to get a referral to a neurologist and have had some testing done. I pushed for further genetic testing that only told me I didn’t have 34 genes that were associated with ALS, Parkinson’s, etc. No genes (good or bad) relating to Alzheimer’s were tested. Talking to docs about HRT, klotho, etc is futile. There are no functional/precision docs in my area. I have also been disappointed with the trials that I have reached out to. Most require you to have MCI which (thankfully) I don’t and there are other criteria that I don’t seem to fit. I registered with SiteRX and have heard nothing from them. I reach out every couple of months and they have nothing new to tell me. I have educated myself by immersing in Dr. Bredesen, Dr. Isaacson, medical studies and reading this website. It’s a journey!
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Re: New member

Post by HelenOwens »

PDW wrote: Wed May 29, 2024 11:02 am Hi everyone! I’m a 64 year old female who is 4/4. I found out about a year ago through 23andme. My mom and her 3 sisters had Alzheimer’s and I have had one male 1st cousin and 1 female 1st cousin who have it. My mom started with MCI in her late 50s and progressed rapidly to total impairment. She lived to be 81 and was in skilled care and 100% bed ridden the last 10 years of her life. Since finding out my status, my biggest challenge has been dealing with the medical community. For many years, I was discouraged by my primary doc from being tested. When I got my results I was able to get a referral to a neurologist and have had some testing done. I pushed for further genetic testing that only told me I didn’t have 34 genes that were associated with ALS, Parkinson’s, etc. No genes (good or bad) relating to Alzheimer’s were tested. Talking to docs about HRT, klotho, etc is futile. There are no functional/precision docs in my area. I have also been disappointed with the trials that I have reached out to. Most require you to have MCI which (thankfully) I don’t and there are other criteria that I don’t seem to fit. I registered with SiteRX and have heard nothing from them. I reach out every couple of months and they have nothing new to tell me. I have educated myself by immersing in Dr. Bredesen, Dr. Isaacson, medical studies and reading this website. It’s a journey!
Hello PDW,

As a Support Team Intern, I’d like to welcome you to the Forum! You have come to the right place to find support in a community of others who are seeking prevention and mitigation strategies. It sounds like you are not only educating yourself but ultimately, empowering yourself with knowledge to affect the lifestyle factors within your control that can benefit your long-term cognitive health, and continue to keep MCI away.

I am so sorry that Alzheimer's has taken so many loved ones from you. It can be frightening to discover your own ApoE4 status especially after having been witness to your family members’ progression through the years. And, even more frustrating to find the right practitioners who will listen to your concerns and are also ApoE4-aware.

Have you discovered this List of ApoE4-aware Healthcare Practitioners on our Wiki page yet? Hopefully, it can help you find someone who is in an area accessible for you.

I’d also like to share several tools & resources to help you get the most out of your experience here on the Forum, if you haven’t already come across them in your exploration here. 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. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response.

The search bar (under your username) is particularly helpful if you have a specific topic in mind.

Wiki Main Page contains a wealth of information.

It really is a journey – one that will take some time to digest, so give yourself grace. And, please do tap into this site and Forum to ask your questions anytime. There are many here with similar stories and challenges - you may find comfort in knowing that you are not alone.

Warmly,
Helen
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Re: New member

Post by NF52 »

PDW wrote: Wed May 29, 2024 11:02 am Hi everyone! I’m a 64 year old female who is 4/4. I found out about a year ago through 23andme. My mom and her 3 sisters had Alzheimer’s and I have had one male 1st cousin and 1 female 1st cousin who have it. My mom started with MCI in her late 50s and progressed rapidly to total impairment. She lived to be 81 and was in skilled care and 100% bed ridden the last 10 years of her life. Since finding out my status, my biggest challenge has been dealing with the medical community. For many years, I was discouraged by my primary doc from being tested. When I got my results I was able to get a referral to a neurologist and have had some testing done. I pushed for further genetic testing that only told me I didn’t have 34 genes that were associated with ALS, Parkinson’s, etc. No genes (good or bad) relating to Alzheimer’s were tested. Talking to docs about HRT, klotho, etc is futile. There are no functional/precision docs in my area. I have also been disappointed with the trials that I have reached out to. Most require you to have MCI which (thankfully) I don’t and there are other criteria that I don’t seem to fit. I registered with SiteRX and have heard nothing from them. I reach out every couple of months and they have nothing new to tell me. I have educated myself by immersing in Dr. Bredesen, Dr. Isaacson, medical studies and reading this website. It’s a journey!
Welcome, PDW!

Like you, I have ApoE 4/4 and my mom and her 4 older sisters also had some form of what was probably "mixed dementia". Mixed dementia means Alzheimer's biomarkers (amyloid plaques and tau tangles) with one or more other brain diseases: vascular, Lewy body, etc. In our parent's generation, that was often vascular dementia, from unrecognized or under-managed cerebral vascular disease or coronary artery disease. Like my mom and her sisters, your mom and her sisters may never have seen a cardiologist. My dad, who had at least one ApoE 4 gene, died of cardiac arrest at age 67, because it wasn't known in the 1980's that 'mild Type 2 diabetes" was a major cardiac risk factor. None of our parents could have known that as ApoE 4 carriers, they were prone to Alzheimer's plaques and tangles, coronary artery disease, carotid artery plaques, and high LDL, but their difficult stories are a gift, in my view, that allows us to take action to change our family history.

The good news is that we can support both our heart and our brains. Keeping our hearts healthy likely dials down both vascular lesions in the brain and inflammation. No neurologist outside of specialized labs looking as rare variants can test for genes being identified as slightly changing the risk up or down for ApoE4. But unlike our parents, we are empowered to act on knowing our ApoE 4/4 status.

Here's what I did at your age, that had the benefit of giving me some targets for supplements and dialing down my anxiety when I got the results, which I update periodically and share with my PCP:
  • I got a prescription from my PCP for a coronary artery scan to see if my arteries were like my dad's. It wasn't paid for by insurance, but for about $150. and a quick, painless CT scan, I learned that I had no plaques and a "cardiac age" of 39.
  • I got direct-to-consumer testing from Life Extension, which has periodic sales on blood tests for the NMR Lipid Profile, which shows LDL-C and LDL-P (particles) and an Lp(a) test, as well as tests for Vitamin B-12, Vitamin D. HbAIC, C-reactive protein and insulin resistance.
  • I learned that I didn't have systematic inflammation or high homocysteine or insulin resistance (although I learned to eat better and lost weight).
  • I learned that I had high Lp(a), an inherited lipoprotein that is less sensitive to diet and can increase the risk of aortic stenosis, which my dad had in addition to coronary artery disease.
  • I had a CT scan to rule out aortic stenosis and aortic aneurysm. That was paid for by insurance, based on my Lp(a) score. No stenosis was a relief!
  • So while statins are not a decisions everyone agrees with, I went on atorvastatin because I have heart and cerebral vascular disease on both sides.
If you know that about your family history you may be able to dial your risk way down with both diet, exercise and, if needed medication.

As for clinical trials, I'm in the AHEAD-45 trial of the drug lecanemab now for people with normal cognition who have "intermediate" or "elevated" levels of amyloid plaques on a PET scan, which means I am further along with Alzheimer's biomarkers than I'd like to be. From what I've heard from the organizers of this trial, about 15% of the people enrolled have ApoE 4/4, even though we're only about 2% of the population. All trials have risks, which are explained in both written consents and verbal discussions, but if you'd like to read about "ChicagoGirl's" experience with screening and being in the trial, check our this topic: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401).

In 2025 or 2026, there is likely to be another large Phase 3 trial looking ONLY for people with normal cognition and ApoE 4/4, using a drug called ALZ-801. Here's a slightly wonky post I did about Phase 2 study results of ALZ-801 a few months ago: Alzheon ALZ-801 results presentations tomorrow. ALZ-801 is an oral pill and does not have the risk of ARIA-E (edema) and ARIA-H (micro-hemorrhage) seen in current anti-amyloid infusions (which come with careful safety monitoring to reduce that risk).

One advantage for you in waiting a year or two to enroll in a clinical trial may be that you could skip the PET scans. Blood plasma tests for amyloid and tau are close to being recognized by the FDA as accurate enough to identify people without a PET scan.

Some trials are also moving to online digital assessments done at home. If you want to try an online assessment that currently has about 50,000 people using it every 3 months in an "observational" trial with no obligation to continue, try the APT Webstudy. It takes about 10 minutes, gets easier when you do it every three months, and will help researchers learn more about how those of us with ApoE 4/4 keep our brains working into our 60's an beyond. (I'm 72 and doing just fine on it.)

You can be notified about trials that you might qualify for, with no obligation, by signing up for the Alzheimer's Prevention Registry and/or Trial Match, through the Alzheimer's Association. All clinical trials would be thrilled if you are also using lifestyle interventions to support your brain, so it's not an either/or choice.

Final note: We ApoE 4/4s seem to have an edge in verbal intelligence. You are showing that in being your own investigator for more information, proving that we also can use our "cognitive reserves" to build "cognitive resilience".

Keep up posted on how you are doing!

Nancy
4/4 and still an optimist!
PDW
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Re: New member

Post by PDW »

Hi Nancy!

Thank you so much for your post. The information you relayed is a huge help and right on the spot for my family history. I’ve never heard the term “mixed dementia” but it makes perfect sense. You are correct that my mother and sisters never saw a cardiologist and my mom would tell me stories of her older relatives, who had, “hardening of the arteries” that caused their minds to be “bad”. I like how you refer to the knowledge that we now have as “a gift…that allows us to take action to change our family history”. The empowerment that you speak of because of our 4/4 knowledge gives me hope.

I had an MRI which showed “moderate burden” hardening of the arteries. Brain volume was good. Like you, I have started taking atorvastatin. I am scheduled for a PET scan. I am going to pursue the blood tests that you mentioned. I have changed my diet and lost approx. 20lbs. I have always been dedicated to exercise, both cardio and weights. I am also on HRT. My sleep is a continuing problem (I can’t turn my brain off)!!

I am currently registered for trials with GeneMatch (Alzheimer’s Prevention Registry) and I will look into the others that you mentioned. The APT Webstudy sounds like a good way to self-track.

Wow! I can’t thank you enough for your reply to my “intro post”. You gave me more advice than I have ever received from the medical community. I especially appreciate the details you gave regarding where to go for the blood tests and exactly the type of tests to request. I will keep you posted on how I am doing and I look forward to hearing about your journey.

PDW
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Re: New member

Post by mike »

PDW wrote: Wed Jun 05, 2024 2:18 pm My sleep is a continuing problem (I can’t turn my brain off)!!
Welcome from another 4/4! When you say you can't turn your brain off, it sounds a bit like me. Most folks would say this is crazy, but I find a TV show that I enjoy, and turn it on very quietly. I listen for a bit and then fall asleep rather than go down rabbit holes. You don't want something that will grab your attention, or get you stirred up in any way. Anyway, maybe worth a try.
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Re: New member

Post by TCHC »

PDW wrote: Wed May 29, 2024 11:02 am Hi everyone! I’m a 64 year old female who is 4/4. I found out about a year ago through 23andme. My mom and her 3 sisters had Alzheimer’s and I have had one male 1st cousin and 1 female 1st cousin who have it. My mom started with MCI in her late 50s and progressed rapidly to total impairment. She lived to be 81 and was in skilled care and 100% bed ridden the last 10 years of her life. Since finding out my status, my biggest challenge has been dealing with the medical community. For many years, I was discouraged by my primary doc from being tested. When I got my results I was able to get a referral to a neurologist and have had some testing done. I pushed for further genetic testing that only told me I didn’t have 34 genes that were associated with ALS, Parkinson’s, etc. No genes (good or bad) relating to Alzheimer’s were tested. Talking to docs about HRT, klotho, etc is futile. There are no functional/precision docs in my area. I have also been disappointed with the trials that I have reached out to. Most require you to have MCI which (thankfully) I don’t and there are other criteria that I don’t seem to fit. I registered with SiteRX and have heard nothing from them. I reach out every couple of months and they have nothing new to tell me. I have educated myself by immersing in Dr. Bredesen, Dr. Isaacson, medical studies and reading this website. It’s a journey!
Hi PDW

I see you had 23andme done. Did you know you can run that through nutrahacker.com, the $37 report is thorough enough and that will tell you if you have other genetic SNPs worth working around. It lists each SNP, what it's supposed to do, what your SNP means for you, what to eat and what to avoid. For example, that's where I discovered my MTHFR SNP meaning I don't process B vitamins well. So I take methyl Bs now.
I hope that helps!
Lindsey
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Functional Medicine Certified Health Coach (FMCHC)
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Re: New member

Post by PDW »

Lindsey:

Thanks for the information about nutrahacker.com. I am going to look into that along with promethease. That would give me 2 more tools to utilize.

I had disappointing results from my Amyloid PET Scan. "moderate burden of amyloid plaques in the brain as would be seen with Alzheimer's disease" (neurologist response). I know the amyloid issue is a hypothesis but my PET scan results have impacted me mentally more so than my 4/4 status.

PDW
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Re: New member

Post by TCHC »

PDW wrote: Mon Jun 17, 2024 10:45 am Lindsey:

Thanks for the information about nutrahacker.com. I am going to look into that along with promethease. That would give me 2 more tools to utilize.

I had disappointing results from my Amyloid PET Scan. "moderate burden of amyloid plaques in the brain as would be seen with Alzheimer's disease" (neurologist response). I know the amyloid issue is a hypothesis but my PET scan results have impacted me mentally more so than my 4/4 status.

PDW
Hi PDW,

I can only imagine how that might have affected you!
And, Dr. Bredesen always says the amyloid plaques are a defence mechanism, so I really hope that all the good work you're doing will lead your brain to heal and clear the soon to be unnecessary plaques.

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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