Hi! I'm new, and have ApoE questions

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Lynne
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Hi! I'm new, and have ApoE questions

Postby Lynne » Thu Feb 21, 2019 4:59 pm

Hi everyone! So glad I found this forum.

My mother has Alzheimer's, both of her parents had it, her two brothers had it, and her grandfather had it. Also my grandmother on my paternal side had it. So I have 7 close family members who have/had Alzheimer's.

I had my mother and I both tested through 23andMe, and then ran the raw data through Promethease, and my mother has ApoE3/ApoE3. I have ApoE3/ApoE4. So I got the E4 gene from my father's side.

I'm wondering how common it is to have Alzheimer's with E3/E3 like my mother? And since her E3's are not really neutral, is it like I have two E4's, since I got my "E3" from her?

She was only diagnosed a year ago, and it's hard watching her go through this. She was always very independent and self-sufficient, and now she needs help with so much. And of course, I'm worried about myself getting it, because I have no significant other or children to take care of me. I have no-one and no money, not sure what I would do if I develop it.

I also recently found out by poking around online that certain medications contribute to developing dementia, and I've been taking 2 of them daily. I am currently working on figuring out replacements for them, they are: Sanctura/trospium (I've been taking for 3 years for bladder spasms), and Silenor/doxepin (I've been taking for 25 years for sleep maintenance disorder).

Both of the medications are to help me get good sleep, and of course, not sleeping well also contributes to dementia, so I'm trying to figure out something that will still let me get the sleep I need without taking these particular medications.

**EDITED BECAUSE I HAD MISTAKENLY LISTED MEDICATIONS (like Lexapro/escitalopram) THAT DO NOT CONTRIBUTE TO DEMENTIA. Here is a useful article that describes which medications to avoid, and it has a handy chart at the bottom that gives possible replacements for them.

https://www.health.harvard.edu/mind-and ... your-brain

Thanks in advance for any info on the ApoE gene questions I have! :-)
Last edited by Lynne on Wed Feb 27, 2019 1:51 pm, edited 2 times in total.

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Chameleon
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Re: Hi! I'm new, and have ApoE questions

Postby Chameleon » Thu Feb 21, 2019 6:59 pm

Hi Lynne,

Thank you for sharing some of your story. With so many family members who have had Alzheimer's, it is good you are researching it more.

I am sure cutting down on some of those medications could be tricky. Perhaps if you work with a functional medicine doctor they could help you wean off those medications and at the same time might be able to help you get to the root cause of your sleep issues and other issues at the same time.

So much of what is part of the Bredesen Protocol is making sure you are in the optimal range for many important factors, like thyroid and hormones. Anything you can do now will help you down the road.

I do want to also point out there is a Primer page that is very helpful and for a listing of some potential doctors you can use this link.

Welcome to the community!

Lynne
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Re: Hi! I'm new, and have ApoE questions

Postby Lynne » Thu Feb 21, 2019 7:35 pm

Thanks for the welcome, and the links. :-) After I submitted my post, I found that Primer link, so much useful info on there! Thanks for the doctors link, I had not seen that.

I try to be proactive with my health. I know some people don't want to know if they have the E4 gene, but I want to know so I can take steps to stave off the dementia as long as possible (I'm 56).

I had not heard of the Bredesen Protocol, thanks for that info! I do see an endocrinologist for my hypothyroidism and am taking Levothyroxine for my thyroid. I use Premarin vaginal cream twice a week to help with my bladder issues, but do not take any other hormones. I am post-menopausal and my estrogen level is 0.
Last edited by Lynne on Fri Feb 22, 2019 1:06 am, edited 1 time in total.

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Re: Hi! I'm new, and have ApoE questions

Postby floramaria » Thu Feb 21, 2019 8:19 pm

Lynne wrote:Thanks for the welcome, and the links. :-) After I submitted my post, I found that Primer link, so much useful info on there! Thanks for the doctors link, I had not seen that.

I like to be proactive with my health. I know some people don't want to know if they have the E4 gene, but I want to know so I can take steps to stave off the dementia as long as possible (I'm 56).

I had not heard of the Bredesen Protocol, thanks for that info! I do see an endocrinologist for my hypothyroidism and am taking Levothyroxine for my thyroid. I use Premarin vaginal cream twice a week to help with my bladder issues, but do not take any other hormones. I am post-menopausal and my estrogen level is 0.


I add my welcome to Chameleon's. I am sorry to hear of the impact Alzheimer's has had on your family. As a proactive 56 year old, there is a good chance that by intervening now with healthy diet and lifestyle changes, you will be able to break the long chain of dementia in your family.

In answer to your question in your first post, "..... since her E3's are not really neutral, is it like I have two E4's, since I got my "E3" from her?", though I am not a doctor (or a geneticist) from what I understand your ApoE3 and her ApoE3 alleles ARE neutral. Something other than the ApoE3 alleles your mother carries is driving her disease. Since Alzheimer's is a complex disease, there can be many contributing factors, and the ApoE4 allele is just one widely studied genetic variant that can be a factor. As you'll learn as you read the Primer and look around the site, within this community there is a widespread belief that we can live in ways that minimize the risks that ApoE4 allele carries.

As you have discovered, the Primer is a rich resource, and a great starting point in getting an overview of The ApoE4 allele.
Take your time reading and digesting the it which will give you a great background from which to expand your knowledge and determine a path that will serve you well. Implementing changes slowly, step by step, is often advised as a way to keep from becoming overwhelmed.

In addition to the link that Cameleon gave you to Providers, which is one section of our Wiki,
the whole Wiki
delves deeply into several other important areas and also includes a section on getting the most our of this website, which has helpful tips. Since you mention not being familiar with The Bredesen Protocol, you may find the section of the WiKi devoted to Dr Bredesen's work interesting. There are also many people on this website who follow Dr Stephen Gundry with excellent results, and Dr Gundry's ideas may also be of interest to you.

You can access a Search function with the magnifying glass to the left of your user name. That allows you to look up all past posts on any word or phrase you enter.

Again, sending you a warm welcome. You'll find that in addition to being a source of knowledge, this is caring community that will be here to support you as you take steps along your journey. As questions arise, please ask them.
And let us know how you are doing!
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)

JohnThomas
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Re: Hi! I'm new, and have ApoE questions

Postby JohnThomas » Thu Feb 21, 2019 11:27 pm

Hi Lynne,

Thanks for your post. I'm 64 and I recently found out that I'm an ApoE 2/4 and I'm just now starting to research what that means to my lifestyle and my diet. I'm glad that you mentioned medication. I'm currently only taking an 81mg aspirin per day and 12.5mg of HCZ to help with the fact that I've had several kidney stones over the years.

My daughter called me today and said "Thanks Dad!!" When I asked her for what, she said that she just found out that she is an ApoE 3/4. My wife is a 3/3, so she got the 4 from me. I reminded her that at 64, I still have a sharp mind and all of my memories, including short term. I can tell you every shot I hit from my last two rounds of golf last week and what I made on each hole if that means anything.

Also, I reminded her that no one on either side of our families has ever been diagnosed with AD or ever been considered feeble minded. She is 40 with 4 young children and as one would guess, she doesn't have the time to do any research on ApoE. I'm a retired engineer and I'm used to analyzing data, so I own that project. :-)

If anyone can point me towards 2/4 or 3/4 info, I'd appreciate it.

John

Lynne
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Re: Hi! I'm new, and have ApoE questions

Postby Lynne » Fri Feb 22, 2019 2:03 am

Thanks floramaria and JohnThomas for your replies. I can't get over how knowledgeable the people on this forum are! I have found the perfect website for me. I love science, this is all fascinating to me, and just the kind of help I needed.

I had also posted my ApoE question on 2 large Facebook Alzheimer's groups, and not one person on there had any idea what I was talking about, they had never heard of an ApoE. I think those groups are mainly for support and commiseration, not education (even though the name of one of the groups is "Alzheimer's Xplained").

floramaria, thanks so much for the answer to my question about my mother having E3/E3, I understand it much better now.

JohnThomas, I had to smile when you related your story of your daughter saying "Thanks Dad!". I can just imagine her sarcastic tone, too funny!

Thanks to everyone for the warm welcome!
Lynne :-)

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Re: Hi! I'm new, and have ApoE questions

Postby Fiver » Fri Feb 22, 2019 9:04 am

Hi Lynne, and welcome.

I'm curious about what you found regarding Lexapro. I'd been reading studies showing a slight protective effect - reduced incidence of cognitive decline - from SSRIs. I'd be interested to read what you've been reading - it's a constant learning process!

Also, I was wondering how old your relatives were when they developed cognitive problems. Sometimes that is a useful clue.
Four relatives with AD. Concerned, but hopeful. Introverted, but will talk about science.

mike
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Re: Hi! I'm new, and have ApoE questions

Postby mike » Fri Feb 22, 2019 10:01 am

Lynne wrote:I'm wondering how common it is to have Alzheimer's with E3/E3 like my mother? And since her E3's are not really neutral, is it like I have two E4's, since I got my "E3" from her?

Lynne, as was already mentioned, your mom's E3 is neutral, but not all Dementia/AD is caused by ApoE4. Often it can be caused by nutrition deficits in the brain. It looks like mitochondrial problems can also cause dementia. And mitochondrial DNA actually comes down only from your mom. One good way to add nutrition to the brain is to start a keto diet. It might still work for your mom. I'm glad you like science - this is a VERY active field right now, and this website is a great place to start learning. I also found both the Primer and the Wiki to be fantastic resources. Also, use the magnifying glass at top right to search for things like "mitochondria" to learn more. And ask questions.
Sonoma Mike
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Re: Hi! I'm new, and have ApoE questions

Postby NF52 » Fri Feb 22, 2019 6:39 pm

Lynne wrote:Hi everyone! So glad I found this forum.
My mother has Alzheimer's, both of her parents had it, her two brothers had it, and her grandfather had it. Also my grandmother on my paternal side had it. So I have 7 close family members who have/had Alzheimer's.

I had my mother and I both tested through 23andMe, and then ran the raw data through Promethease, and my mother has ApoE3/ApoE3. I have ApoE3/ApoE4. So I got the E4 gene from my father's side.

I'm wondering how common it is to have Alzheimer's with E3/E3 like my mother? And since her E3's are not really neutral, is it like I have two E4's, since I got my "E3" from her?...
Welcome Lynne!

You ask wonderful questions, that any geneticist or neuroscientist would respond to with something like "I wish we could provide a definitive answer to those great questions, but we're just not there--yet." But I do think I might be able to shed a little light on your question of whether your mother and her family's got some evil-twin version of ApoE 3 that's acting like an ApoE 4.

Here's a couple reasons why that's probably not the case:
People with ApoE 3/3 can and do still get Alzheimer's. I was at a meeting of scientists rating applications for funding for Alzheimer's research in December and they said: The biggest risk factor for Alzheimer's overall is advanced old age. Currently about 1/3 of people over the age of 85 would be likely to get a diagnosis of either Mild Cognitive Impairment (MCI) or Alzheimer's disease (AD), according to a summary of the 2018 international Alzheimer's Association conference. That's actually an improvement over previous decades, when about 50% of people over 85 had AD. If your mother and her parents and brothers developed dementia in their late 70's or 80's, it's possible that it was from a combination of risk factors (including pollution and dietary habits that you don't have).

It's also the case that "Alzheimer's" has become something of a catch-all diagnosis. My own mother was given that diagnosis shortly before she died, after years of slowly worsening memory issues, and a much earlier MRI that showed white matter disease. It's likely that she actually had primarily vascular dementia from years of uncontrolled high blood pressure with some AD pathology in addition. Her own mother died of a stroke at age 45, another indication of vascular issues.

It's also possible that they had some other genes that contributed some risk. An example from a scientist who studies autism that I like is the idea that the genes that can cause autism spectrum disorders are very common, like keys on a key board. If a few of them that are highly associated with autism are "expressed", the child may have an evident, early diagnosis of autism. If the child has several of the "minor" keys associated with autism, he or she may be diagnosed much later in school due to subtle difficulties with social, language, and other skills.

So what we think of an an all or nothing diagnosis may in fact be a very wide spectrum of disorders that affect brains in many different ways in different people. You only inherited 50% of your mom's genes. And they only get "expressed" under the right conditions. For me, with ApoE 4/4, I have outlive my maternal grandmother's stroke, my paternal grandfather's cancer death at 48, and my father's severe coronary artery disease that led to his death at 67. So I know genes are not destiny!

Be well, Lynne.
4/4 and still an optimist!

Lynne
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Re: Hi! I'm new, and have ApoE questions

Postby Lynne » Sat Feb 23, 2019 12:22 pm

Fiver wrote:Hi Lynne, and welcome.

I'm curious about what you found regarding Lexapro. I'd been reading studies showing a slight protective effect - reduced incidence of cognitive decline - from SSRIs. I'd be interested to read what you've been reading - it's a constant learning process!

Also, I was wondering how old your relatives were when they developed cognitive problems. Sometimes that is a useful clue.


Hi! Thanks for your comment about Lexapro! I don't know where I got the idea that it was bad for my brain, I just poked around some more, and I don't see it on the list of offenders. Here's a link I like because it has a handy chart at the bottom (I hope I'm allowed to post links here, if not admins please delete). Lexapro was the medication I stopped first because I had only recently started it, and I wasn't even sure how much it was really helping me, so it was easy to stop taking it.

https://www.health.harvard.edu/mind-and ... your-brain

As for the age of onset for my relatives, my paternal grandmother (which is where I got my E4 from) didn't develop dementia until she was 90. On my mother's side the age of onset varies between 65 and 75.

Thanks for the welcome and the useful information. :-)
Last edited by Lynne on Sat Feb 23, 2019 3:58 pm, edited 1 time in total.


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