I feel like I am out on an island

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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KWhitney
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I feel like I am out on an island

Post by KWhitney »

Greetings from NC,
My name is Kate and I am a 44 yr old mother of 4 who may or may not be having some denial with my Apoe 4/4 status ;) I found this information out years ago after 23 & me and honestly felt bummed but didn't think much more about it.

Over the past few years I have been dealing with chronic illness, and truly it all came crashing down after my first Covid 19 sickness in Jan 2021- I was down and out for 17 days. Since then my Hashitmoto's has gone bonkers, and I just "knew" my EBV had reactivated, I lost my taste and smell until my first vaccine which brought back most of it ( Thank God) had my second dose, and then got Covid again literally down to the same day in January as the year prior. My joint pain, inflammation and brain fog have been off the charts. This has led me down the functional medicine podcast rabbit hole which is where Apoe4/4 was mentioned over and over again and started really freaking me out.

I downloaded my raw data from 23 & me and have started seeing a functional medicine doctor who is running a ton of tests. So much of this genetic code makes sense to me, when I get sick, I get real sick... like 6 weeks out with Mono/EBV at age 17... I have little to no ability to grasp spatial concepts like " step back 3 feet" my brain has literally always gone blank! I have always had higher cholesterol even though I have been in shape- Now I know why... thank you 4/4 -HA

The one thing that is tripping me out the most is that only my Grandmother had Dementia so far in my family, she had "Pics" disease now known as frontal lobe. My Father and Grandmother passed away at 51 and 61 so maybe one of them could have ended up with it? But this is hereditary correct? Heart disease and high cholesterol have run rampant on my mother's side of the family - so can the Apoe4 present more in that manner and less with AD. I am so confused? I do feel there is so much more to this gene and am determined to learn all I can and also I really want to help in the fight against AD in anyway I can.

Has anyone met with a genetics counselor about the Apoe 4/4?

Thank you so much for listening and I wish us all healthy and clear minds for as long as we desire :)
Alexia C
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Re: I feel like I am out on an island

Post by Alexia C »

KWhitney wrote: Wed Oct 26, 2022 3:28 pm Greetings from NC,
My name is Kate and I am a 44 yr old mother of 4 who may or may not be having some denial with my Apoe 4/4 status ;) I found this information out years ago after 23 & me and honestly felt bummed but didn't think much more about it.

Over the past few years I have been dealing with chronic illness, and truly it all came crashing down after my first Covid 19 sickness in Jan 2021- I was down and out for 17 days. Since then my Hashitmoto's has gone bonkers, and I just "knew" my EBV had reactivated, I lost my taste and smell until my first vaccine which brought back most of it ( Thank God) had my second dose, and then got Covid again literally down to the same day in January as the year prior. My joint pain, inflammation and brain fog have been off the charts. This has led me down the functional medicine podcast rabbit hole which is where Apoe4/4 was mentioned over and over again and started really freaking me out.

I downloaded my raw data from 23 & me and have started seeing a functional medicine doctor who is running a ton of tests. So much of this genetic code makes sense to me, when I get sick, I get real sick... like 6 weeks out with Mono/EBV at age 17... I have little to no ability to grasp spatial concepts like " step back 3 feet" my brain has literally always gone blank! I have always had higher cholesterol even though I have been in shape- Now I know why... thank you 4/4 -HA

The one thing that is tripping me out the most is that only my Grandmother had Dementia so far in my family, she had "Pics" disease now known as frontal lobe. My Father and Grandmother passed away at 51 and 61 so maybe one of them could have ended up with it? But this is hereditary correct? Heart disease and high cholesterol have run rampant on my mother's side of the family - so can the Apoe4 present more in that manner and less with AD. I am so confused? I do feel there is so much more to this gene and am determined to learn all I can and also I really want to help in the fight against AD in anyway I can.

Has anyone met with a genetics counselor about the Apoe 4/4?

Thank you so much for listening and I wish us all healthy and clear minds for as long as we desire :)
Hello Kate,

Welcome to the forum!

I am so glad you found us. I hope we can be a source of information and support as you move forward with your health journey. I see you are already working with a functional medicine doctor and are doing all the recommended tests. Your courage, curiosity and determination clearly come across in your post. I am sure as you get the test results your Dr. will provide you with concrete guidelines to assist you with your symptoms and long-term health.

Regarding your genetic counselor/Apoe4 inquiry, I have no doubt other members will provide you with some answers or share their experiences.

As a welcome intern, I would like to point out some resources to learn more about ApoE4. 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.

In addition, the How-To Guide offers tips on how to navigate forums, including how to quote members when you respond to posts so they get an email notification of your post (use the quotation icon in the upper right of any post). This guide also shows you how to use the search function and how to subscribe to topics of interest in the forums.

If you would like to tell us more about yourself or are interested in learning more about other members check out Our Stories. You might find members with similar experiences to yours that can steer you in the right direction.

I hope you find these tools useful. Please reach out if you need further assistance navigating the site. I encourage you to keep sharing your experiences. Personally, having a close family member with AD, I understand how all the information can be overwhelming. Having a caring community to support you can make all the difference.

Thank you for your healthy and clear mind wishes! Indeed, we must all strive to keep a healthy mind. I personally take tiny steps at a time as I incorporate all the best lifestyle practices. It is not always easy. (I am 53 :D )

Please know we are always here to listen and support you.

I look forward to hearing from you in the future.

Warmly,

Alexia C
mike
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Re: I feel like I am out on an island

Post by mike »

KWhitney wrote: Wed Oct 26, 2022 3:28 pm The one thing that is tripping me out the most is that only my Grandmother had Dementia so far in my family, she had "Pics" disease now known as frontal lobe. My Father and Grandmother passed away at 51 and 61 so maybe one of them could have ended up with it? But this is hereditary correct? Heart disease and high cholesterol have run rampant on my mother's side of the family - so can the Apoe4 present more in that manner and less with AD. I am so confused? I do feel there is so much more to this gene and am determined to learn all I can and also I really want to help in the fight against AD in anyway I can.
Kate, the ApoE variant is hereditary, but having 2 copies of ApoE4 does not mean you have to get AD, it just raises your chances. This site talks about ways to lower those chances through lifestyle changes. There is also exciting research being done that may finally lead to treatments. You are young and have time. Exercise is critical. Doesn't have to be crazy - go for walks.
Sonoma Mike
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Re: I feel like I am out on an island

Post by TCHC »

Hi Kate
I haven't had genetics counselling, so I can't help with that, but I would echo Mike's point, having the gene doesn't mean you get the disease. What you've actually done, is arm yourself with information that you can use to minimise (eliminate?) your risks.
By contrast, my Mum has ApoE3/4 (she's on the protocol and doing really well) and I'm ApoE3/3, but she has passed on other genetic SNPs that could have an impact, so I'm on a prevention protocol myself. The healthy lifestyle can only help in all areas of health, not just dementia risk. If anything, finding this info has allayed any fears I had.
You're doing the right things; arming yourself with the facts, getting help from an FM Practitioner, testing and adjusting your lifestyle.
I wish you the very best with your journey.
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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