Rough dsy, just got test results I have 1 copy

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Wendi
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Rough dsy, just got test results I have 1 copy

Post by Wendi »

Hello all,
So grateful to find this forum. I just listened to a voice mail from my doctor's office. I have 1 copy of the APOE4.
Do I tell my siblings to get tested?
I am not totally surprised since my mother had Alzheimer's. But I am shocked and very, very sad to hear this.
I am hoping to find the top 10 of things to do now. Down the rabbit hole of google.
Sad puppy.
Wendi
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Tincup
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Re: Rough dsy, just got test results I have 1 copy

Post by Tincup »

Wendi wrote:Hello all,
So grateful to find this forum. I just listened to a voice mail from my doctor's office. I have 1 copy of the APOE4.
Do I tell my siblings to get tested?
I am not totally surprised since my mother had Alzheimer's. But I am shocked and very, very sad to hear this.
I am hoping to find the top 10 of things to do now. Down the rabbit hole of google.
Sad puppy.
Wendi
Hi Wendi,

Understand how you feel, we've all been there. My mom passed with dementia as well. If there was nothing to do, then it would indeed be sad news, but we feel like there is quite a bit of things that can alter the trajectory of your path. Knowing your status, doesn't change it, but it enables you to learn and change your lifestyle. Places to start learning include our Primer, our Wiki, Dr Bredesen's books here and here.

As to telling your sibs, you might wait till you've done a little spadework and can give them some background, too.

Though you've been tested, you might read our wikion the topic, prior to talking to your sibs.
Tincup
E3,E4
Wendi
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Re: Rough dsy, just got test results I have 1 copy

Post by Wendi »

Hi Tincup,
Thank you for this. I have the Bredesen book, I have been reading it the last week since I had a talk with my Dr about my memory fears.
Dr Gundrey is also a great resource. I have been eating Keto for over a year, and intermittent fasting, which I see is a part of the plan. I will start testing my ketones and getting things dialed in. .
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Tincup
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Re: Rough dsy, just got test results I have 1 copy

Post by Tincup »

Wendi wrote:Hi Tincup,
Thank you for this. I have the Bredesen book, I have been reading it the last week since I had a talk with my Dr about my memory fears.
Dr Gundrey is also a great resource. I have been eating Keto for over a year, and intermittent fasting, which I see is a part of the plan. I will start testing my ketones and getting things dialed in. .
Hi Wendi,

Sounds like you are off to a good start!

My wife & I are Gundry patients and have posted links to transcripts of 10 hour-long consults here.
Tincup
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SusanJ
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Re: Rough dsy, just got test results I have 1 copy

Post by SusanJ »

Wendi wrote:I just listened to a voice mail from my doctor's office. I have 1 copy of the APOE4.
Do I tell my siblings to get tested?
I am not totally surprised since my mother had Alzheimer's. But I am shocked and very, very sad to hear this.
Welcome, and we're glad you found your way to our site. It is shocking and sad to get this news! I felt the same way when I found out I was a 3/4. I wasn't surprised because my dad died from it, as did some of his relatives. But it was a gut punch none-the-less.

I'd like to say that it was pretty callous of your doctor's office to leave you this information on your voice mail! They really should have asked you to come in for an appointment to tell you the news, and so you could ask questions. Please, feel free to look around here and ask any questions you might have and someone here will likely have some information.

I would personally wait a little while before you tell your siblings. I took my time, and worked through other genetic info (from my 23andme) that I thought could also be important like problem variants in methylation, choline and vitamin D processing. When I did let them know, I shared some of the other genetic information and what they might do to address them, and what tests they should probably do to assess their risks. Just know that not everyone wants to know, or actually want to do anything about their potential risks. You'll need to assess whether your siblings will likely take any action if you tell them.
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carrie
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Re: Rough dsy, just got test results I have 1 copy

Post by carrie »

Wendi wrote:Hello all,
So grateful to find this forum. I just listened to a voice mail from my doctor's office. I have 1 copy of the APOE4.
Do I tell my siblings to get tested?
I am not totally surprised since my mother had Alzheimer's. But I am shocked and very, very sad to hear this.
I am hoping to find the top 10 of things to do now. Down the rabbit hole of google.
Sad puppy.
Wendi

Hi Wendi!

As an intern on the ApoE4.info forum, I wanted to extend a warm welcome.

I absolutely understand the sadness upon hearing the news from your doctor. For me, I discovered last year I carry one copy of the ApoE4 allele. I wasn't looking for it specifically but rather did my sequencing out of curiosity. Based on family history I knew it was a possibility. However, I was still surprised by my emotions with the discovery. While the science is evolving, I find hope in the information around lifestyle interventions and the research being conducted.

As you have discovered, the Apoe4.info site contains a wealth of information and an interactive community. To help you navigate, I would encourage you to take a look at the How-To. It contains helpful tips such as using the quotes button when replying to a post which will alert the other member via email of your reply. There are other handy tips explaining how to search and subscribe to your topics of interest and more.

Again, a big warm welcome. If you have any questions about the site, please don't hesitate to ask.
Looking forward to seeing you around the forum.

Best wishes,
Carrie
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floramaria
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Re: Rough dsy, just got test results I have 1 copy

Post by floramaria »

Wendi wrote:Hello all,
So grateful to find this forum. I just listened to a voice mail from my doctor's office. I have 1 copy of the APOE4.
Do I tell my siblings to get tested?
I am not totally surprised since my mother had Alzheimer's. But I am shocked and very, very sad to hear this.
I am hoping to find the top 10 of things to do now. Down the rabbit hole of google.
Sad puppy.
Wendi
Hi Wendi, It is great that you found this website and are already taking steps that improve your chances of living a long healthy life, both physically and cognitively. As you can already tell, you will get a lot of support here on your journey. And this Website can save you from going down a few rabbit holes. There is a wealth of information here, and also a wealth of science-based and experience-based hope. As a fellow carrier of one copy of the ApoE4 allele with a maternal line history of AD through several generations, I welcome you. And agree with SusanJ that your doctor’s office should have had the sensitivity to discuss your genetics with you rather than leaving a voicemail. I hope you will let them know that this caused you distress. Your telling them that may save others from the shock you experienced.
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
ReCODE 2.0 Health Coach with Apollo Health
Wendi
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Re: Rough day, just got test results I have 1 copy

Post by Wendi »

Hi, Thank you for your support. I will call the doctors office today for more help. I am getting started on the Bredesen protocol.
Since I just moved to Hawaii I had several boxes shipped, one with all of my supplements. It has been 7 days and no boxes have arrived. Being in quarantine for 14 days makes it tough to replace all the supplements since amazon is taking really long to deliver orders and I am in a condo/hotel temporarily without an address and the front desk will not receive deliveries. I was already taking many of the supplements needed and I have been keto for over a year.
Do any of you use the Brain HQ program that is mentioned in the Bredesen?
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Bharati
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Re: Rough dsy, just got test results I have 1 copy

Post by Bharati »

Hi Wendi and All

I've not posted before here but find this website invaluable and have been dipping in and out of the wealth of information for some while now.

I found out I was ApoE3/4 in the autumn of 2018 (I'm in the UK) and initially felt my life had been ruined by the knowledge (that lasted about a week!). My maternal grandfather died of AD and I had also had my suspicions of my genetic status. I've had word finding symptoms for over 10 years now and sometimes I feel my brain is in a bit of a fog. The latter has dramatically changed since adding in methylcobalamin and adenosylcobalamin sublingually, alongside regular injections. I've had a diagnosis of Vitamin B12 deficiency for about 20 years. I now know I have both of the Vitamin B12 SNPs, rs602662 and rs601338, which means I don't absorb this vitamin very well. I also had 25 years of leaky gut which has now pretty much been addressed over the past two years via a functional diagnostic nutritionist.

My husband and I have just started doing regular intermittent fasting plus exercise (strength training on alternate days) and moving towards being keto. I've tested my levels of BHB (Beta-hydroxybutyrate) before breaking the fasts (18+ hours twice a week at the moment) and I'm struggling to get into ketosis (my level is usually 0.3 and yesterday it was 0.4). For years I had episodes of hypoglycaemia mid-morning which seemed to be related to eating grains for breakfast. But I realise now that I probably have some level of insulin resistance, at least in my brain, thanks to reading Dr Bredesen's new book which I'm on my second read through. Thank you Julie G for your wonderful input. I've been recommending the book to everyone as I feel it is a script for a healthy lifestyle for all (I used to be a medical doctor).

Just as an aside, I don't know how to make a link to one of the other forum users in order for them to know I have made a comment for them.

Thank you all again.
Bharati
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Re: Rough dsy, just got test results I have 1 copy

Post by NF52 »

Wendi wrote:Hi, Thank you for your support. I will call the doctors office today for more help. I am getting started on the Bredesen protocol....Do any of you use the Brain HQ program that is mentioned in the Bredesen?
Bharati wrote:Hi Wendi and All

I've not posted before here but find this website invaluable and have been dipping in and out of the wealth of information for some while now.

I found out I was ApoE3/4 in the autumn of 2018 (I'm in the UK) and initially felt my life had been ruined by the knowledge (that lasted about a week!). My maternal grandfather died of AD and I had also had my suspicions of my genetic status. I've had word finding symptoms for over 10 years now and sometimes I feel my brain is in a bit of a fog. The latter has dramatically changed since adding in methylcobalamin and adenosylcobalamin sublingually, alongside regular injections. I've had a diagnosis of Vitamin B12 deficiency for about 20 years. I now know I have both of the Vitamin B12 SNPs, rs602662 and rs601338, which means I don't absorb this vitamin very well. I also had 25 years of leaky gut which has now pretty much been addressed over the past two years via a functional diagnostic nutritionist.

My husband and I have just started doing regular intermittent fasting plus exercise (strength training on alternate days) and moving towards being keto. I've tested my levels of BHB (Beta-hydroxybutyrate) before breaking the fasts (18+ hours twice a week at the moment) and I'm struggling to get into ketosis (my level is usually 0.3 and yesterday it was 0.4). For years I had episodes of hypoglycaemia mid-morning which seemed to be related to eating grains for breakfast. But I realise now that I probably have some level of insulin resistance, at least in my brain, thanks to reading Dr Bredesen's new book which I'm on my second read through. Thank you Julie G for your wonderful input. I've been recommending the book to everyone as I feel it is a script for a healthy lifestyle for all (I used to be a medical doctor).

Just as an aside, I don't know how to make a link to one of the other forum users in order for them to know I have made a comment for them.

Thank you all again.
Bharati
Welcome, Bharati!

We're so glad you took this opportunity to share a little about yourself. I've used the quotation mark in the upper right corner of the post to bring over an excerpt of Wendi's latest post., so she will get an email notification of your kind response.

Your experience with methylcobalamin is similar to mine (I had been taking the "store" version and was alerted to my low levels as part of a clinical trial for healthy people with ApoE4.) Your insights into the benefits of a second read-through of Dr. Bredesen's are exactly the same as "JML", one of our Senior Support staff and a certified health coach, who said she read it once to see the big picture and then a second time to dive deep into various sections. You may be interested in the Virtual Book Club discussion she's going to be leading starting this Saturday, Sept. 26 at 9:30 PM British DST time. (A little late, I realize). More info on that is here:
VIrtual Book Club. If you'd like to join, please send a Private Message to JML, by clicking on the envelope icon in the upper right corner next to your user name. That will open a window to compose a "new message" and you can put her user name "JML" in as the recipient.

Here are a few resources that may be helpful using quotes, sending PMs and finding other great resources:
The Primer is written by a doctor who herself carries two copies of ApoE4 and who believes that we all can take steps, often small ones initially, that will improve our overall health and increase our brain's ability to dial down the risks associated with Apoe4 and dial up our innate cognitive reserves and brain resilience.

"How-To" Get the most out of the ApoE4.info website was developed to help new (and veteran) members learn how to quote others so that the intended audience receives an email notification of your reply, how to search for topics of interest, and how to subscribe to topics of interest.

As you say in the UK "Cheers!"
4/4 and still an optimist!
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