4/4 and both parents

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Tabby
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4/4 and both parents

Postby Tabby » Thu Apr 23, 2020 1:48 pm

I found out my 4/4 status a few months ago from 23andMe. I am an active 53 year old woman with teenagers at home. I knew I had a good chance of getting Alzheimer's since both of my parents had it, but it was still a shock to get genetic confirmation. Both of my parents were highly educated and trim. Neither of them had heart disease or diabetes, so I am assuming their demise was mostly genetic. I have been lurking for several months now, studying the wiki, the primer, and the how to, but I have several questions that I hope you can answer.

Fats
I have been trying to figure out which fish oil to get and I know we need it to be in phospholipid form. In 2014 krill oil was the thing to take. Now it appears that the levels in krill oil are too low. Are there any supplements available that have sufficient phospholipid content?I try to eat SMASH fish but I have a really hard time eating fish from a can. I have to try really hard not to see the little vertebral columns, and to force it down without gagging. I love salmon but I cant eat it every day. Also, I usually avoid eating from cans but this is how most of these fish come. I bought a small container of salmon roe which was equally hard to get down, but I found if I froze the roe, I could swallow them like little pills without chewing. How are other people getting sufficient amounts, in the correct form of EPA and DHA? Is anyone buying the roe in bulk? If so, from which company and how do you manage to eat it? Should I still be taking regular fish oil? Cod liver oil? Is there value in taking these since they are in ester form? Should I get a separate DHA supplement?

B vitamins
I am heterozygous for both of the MTHFR. I take a multivitamin (Pure encapsulations) with 500mcg of methylcobalamine, but I know this is not enough and I need to take another supplement. Which brand and which formulation should I get?

APOE 4
I sent my raw data to Promethease. The first thing that pops up is that I have two copies of APOE4, then at the bottom in a pink box it says possible false positive. Does everyone's report have this? Is it just a disclaimer? It recommends that I see a genetic counselor but I want to my genetic issues confidential.

Covid-19
As APOE4s we supposed to keep our inflammation to a minimum. Is Covid-19 even more dangerous to us? It does have some affect on the nervous system since it decreases smell and taste. I am still working, and at some point the teenagers will escape from the house so my risk of exposure is pretty high.

Protecting data
One of the reasons I did 23andMe was to find relatives. Now I am afraid to release any of my data. Will putting my data out there to identify family increase my risk of losing confidentiality?

Thank you in advance for answering my questions. I hope it isn't too much to ask so many at one time.

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Re: 4/4 and both parents

Postby NF52 » Thu Apr 23, 2020 3:12 pm

Tabby wrote:I found out my 4/4 status a few months ago from 23andMe. I am an active 53 year old woman with teenagers at home...I have several questions that I hope you can answer...
Welcome, Tabby, from another ApoE 4/4!

You've asked great questions! This is a community built on helping ourselves by helping each other. I'll offer my views on a few of your questions. I found out my results six years ago through 23&me and was frankly horrified to see the results. Having just turned 68, and knowing from participation in a 2-year clinical trial that my cognitive scores have not changed, I have more confidence that we have lots of paths for resilience.

As an example of knowledge your parents couldn't have had, the May issue of Scientific American (available onlnine) has an article relevant to someone your age: Menopause Predisposes a Fifth of Women to Alzheimer’s. Among other important researchers on women's health such as Dr. Lisa Mosconi, they quote Dr. Roberta Brinton, a researcher who is studying ApoE 4 and menopause. Dr. Brinton sees APOE4 status as
“a wake-up call, not a death sentence”: plenty of women with APOE4 do not have the disease...The take-home message is that sustaining metabolic health sustains cognitive health,” Brinton concludes. “You can't change your chromosomal sex or age or your gene variant. But you can change your metabolic health and thus your level of risk.”
In the fall of 2019, Dr. Brinton received a grant for $37 million from the National Institute on Aging to study ApoE 4 using a version of a natural steroid drug (allopregnanolone) that showed promise in actually regenerating hippocampal cells and reducing brain inflammation. it will probably study people with Mild Cognitive Impairment--but research almost always extends knowledge and opens doors for more and earlier approaches.

Like you, I used Promethease to get their easy-to-read reports on my genes. I take their caution of the 4/4 results as just that and an unlikely event, since 23&me claims to have above 99% accuracy. I assume your family history is like mine: two parents who each had a gene shared by 20-25% of people of European descent. Not lucky in my ApoE4 status, but lucky in so many other ways to have had those parents. (One died of cardiac arrest at age 67; the other of heart failure with moderate AD at age 86.)

Here's some helpful info from 23& me about your genetic data: You have full control over what people see when they check out their DNA relatives:
https://customercare.23andme.com/hc/en-us/articles/212170838-DNA-Relatives-Privacy-Display-Settings
Participation in DNA Relatives
If you choose to opt in and participate in DNA Relatives, all of your matches will be able to view the following information about you:
Your display name Your profile sex (Male/Female) Your profile picture
The percent DNA and number of segments you share, but not the location of those segments
Relatives in Common
Finally, I too take 500mcg daily of methylcobalamin, originally recommended by the Study Site Dr. based on the extensive blood and biomarker testing done in clinical trials. That got my B12 levels to the mid 600's, comfortably above the 500 level recommended by both Dr. Bredesen and the Study Site Dr. I also am heterozygous for MTHR mutations, by the way. You may want to check out our Wiki on methylation, if you haven't seen it yet.

We have so much to learn about COVID-19, and I can only imagine what it's like to keep teens inside! But I have seen nothing that convinces me that our status confers an extra risk of neurological damage if we are otherwise healthy. You could suggest to your kids that when they go out into a crowd without a mask, they will have to strip out of their clothes in the garage, bag them, change into sweats before a shower, then wash everything in hot water and clean the bathroom. That might make video games and Instagram more appealing!

Be well, and trust that we will all feel better about our futures in the near future!
4/4 and still an optimist!

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Re: 4/4 and both parents

Postby RAJ64 » Thu Apr 23, 2020 9:05 pm

Tabby wrote: I have been lurking for several months now, studying the wiki, the primer, and the how to, but I have several questions that I hope you can answer... Thank you in advance for answering my questions. I hope it isn't too much to ask so many at one time.

Welcome, Tabby! So nice to have your participation on the ApoE4.info forums! I see that you have already been diligently studying various parts of the site which we usually point out to newer members. That's commendable! I see that your studies have paid off in the types of questions you are asking. :)

NF52 has addressed many your questions in detail, but please feel free to keep asking and by doing so, learning and helping others learn. You are doing a wonderful job advocating for yourself and your health. The ApoE4 community is here to support you on your journey. Best to you!

Warmly,
Rachel
RAJ64, BSN, RN
ApoE4.info Intern
Functional Medicine Certified Health Coach
With the new day comes new strength and new thoughts. ~ Eleanor Roosevelt

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Re: 4/4 and both parents

Postby SusanJ » Fri Apr 24, 2020 6:08 am

Tabby wrote:How are other people getting sufficient amounts, in the correct form of EPA and DHA?


Welcome. We've had several discussions about this. I did a search and several threads come up that you might want to explore. I just put "phospholipids fish oil" in the search box and got these results.

Keep exploring and asking questions!

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Re: 4/4 and both parents

Postby FitFoodie » Mon Apr 27, 2020 2:56 pm

Tabby wrote:
Fats
I have been trying to figure out which fish oil to get and I know we need it to be in phospholipid form. In 2014 krill oil was the thing to take. Now it appears that the levels in krill oil are too low. Are there any supplements available that have sufficient phospholipid content?I try to eat SMASH fish but I have a really hard time eating fish from a can. I have to try really hard not to see the little vertebral columns, and to force it down without gagging. I love salmon but I cant eat it every day. Also, I usually avoid eating from cans but this is how most of these fish come. I bought a small container of salmon roe which was equally hard to get down, but I found if I froze the roe, I could swallow them like little pills without chewing. How are other people getting sufficient amounts, in the correct form of EPA and DHA? Is anyone buying the roe in bulk? If so, from which company and how do you manage to eat it? Should I still be taking regular fish oil? Cod liver oil? Is there value in taking these since they are in ester form? Should I get a separate DHA supplement?


I'm a big fan of getting nutrients through food if at all possible -- but I also happen to love the taste of fish and fish roe. I toast a little sourdough or Danish Rugbrød and put the roe on top. Cream cheese under the roe, if you're doing dairy fat.

This is where I got it from. Much better than Amazon. I froze it into more manageable vacuum-sealed pouches. I defrost a pouch, put it in a little clean jar and enjoy for a week or two. I'm still working on the 1 kg I bought in mid Feb, and I have a husband and teens who eat it too.

https://olmafood.com/store/pink-salmon-roe-caviar-1kg

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Re: 4/4 and both parents

Postby Tabby » Mon Apr 27, 2020 5:32 pm

Thank you for the replies. I feel much better about using my 23andMe to search for relatives.

Rhonda Patrick supposedly takes Norwegian Pure Omega 3 but it is constantly out of stock. Is there any way to get it?

It is really difficult to find Omega-3 in triglyceride form. Most supplements dont specify so I assume they are ethyl esters, and so not helpful for E4s. NN Phospholipids at least specifies triglyceride but only has 200mg DHA. It seems we need 800-1000mg DHA. One person here is taking Carlson Elite DHA gems but since they dont mention what form the DHA is in, should I assume they are ethyl esters, so maybe not what I want? Is there a better one? Am I on the right track? Also, the EPA is only 190mg. Is that sufficient? I feel like I am getting paralysis through analysis. I have read through so many threads (and many several times) and the wiki, but I want to be sure that I am ordering the right thing.

At least I feel like I can't go wrong with the roe, provided I can get it down. Thank you FitFoodie, I am going to order the Olma roe tonight. You are lucky your teens will eat it.

Phosphatidlycholine??? Should I order this too? Or, does this overlap with the phospholipids I am considering ordering.

I am pretty sure my computer will suffer a slow death from all of the windows I have open looking at different threads and supplements to consider. Please, save my computer and help me make some decisions.

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Re: 4/4 and both parents

Postby laurie » Thu Apr 30, 2020 10:13 am

Tabby wrote:I found out my 4/4 status a few months ago from 23andMe. I am an active 53 year old woman with teenagers at home. I knew I had a good chance of getting Alzheimer's since both of my parents had it, but it was still a shock to get genetic confirmation. Both of my parents were highly educated and trim. Neither of them had heart disease or diabetes, so I am assuming their demise was mostly genetic. .


You mention genetics in regards to your parents having Alzheimer's. There may be a genetic component to your parents getting Alzheimer's but it may not be what you think. Familial AD is believed to have a genetic link but accounts for only 1-2% of AD cases.

Below is more information about APOE4 and Alzheimer's. Here is an excerpt from an evidenced based book my husband has written. His mother in law has late onset Alzheimer's and he has been able to help her. She is 93 and is living on her own in her own home. I have several posts in this forum you may want to take a look at. Let me know if you have any questions. The number of cases of Alzheimer's is rising too rapidly for the cause to be solely genetic. Environmental factors need to be considered and there is mounting research in this regard. Here is an excerpt from my husbands book.

"Sporadic AD accounts for the remaining 98-99% of AD cases and after extensive searching only the apoE4 gene has been found to increase the risk for sporadic AD. Carriers of the apoE4 gene, about 20% of the population, have a 60% chance over age 80 of having AD versus a 10% overall risk of AD over age 80 in the general population. Therefore the difference in risk for AD between carriers and non-carriers of this gene is 50%. In 2002 there were 9 million people in the U.S. who were 80 years of age or older. A 50% chance of AD in the 20% of those over 80 with the apoE4 gene corresponds to 10% of 9 million people or 0.9 million cases of AD. There were 2.7 million AD cases in the U.S. in 2002. This means approximately 1/3 (33%) of the sporadic AD cases in the U.S. could be due to genetics involving the apoE4 gene.
Carriers of the apoE4 gene are more vulnerable to AD because they have higher than normal levels of Aβ peptides that can result in higher levels of Aβ oligomers and Aβ plaques. ApoE proteins are chaperones that complex with Aβ peptides and facilitate their transfer across the blood-brain-barrier and out the brain. Carriers of the apoE4 gene may be more vulnerable to AD because they produce an Aβ peptide chaperone molecule apolipoprotein E4 (apoE4). This chaperone works with a slow receptor that slows Aβ peptide clearance from the brain. Also carriers of the apoE4 gene have less apoE protein in their serum and this also slows Aβ peptide clearance from the brain. Therefore carriers of the apoE4 gene have higher than normal levels of Aβ peptides in their brains that can result in higher levels of Aβ oligomers and plaques in their brains."

Research has reached a tipping point and Aluminum is a causal factor of Alzheimer's and here is one reason people with APOE4 are at higher risk of Alzheimer's. Those who have the ApoE 4 or 4/4 gene have higher concentrations of beta amyloid oligomers that react with aluminum forming a toxic complex that kills neurons. This complex is 10 times more toxic than beta amyloid and amyloid plaque.

The good news is drinking water high in silica is effective at removing aluminum from your body and brain.
"True prevention is only possible by first discovering the cause of a disease such as Alzheimer's."
Dennis N Crouse

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Re: 4/4 and both parents

Postby FitFoodie » Sat May 02, 2020 5:36 am

Tabby wrote:I am pretty sure my computer will suffer a slow death from all of the windows I have open looking at different threads and supplements to consider. Please, save my computer and help me make some decisions.


Yep -- that's why I ended up buying the salmon roe. I spent a long time wading through the results published here and decided it was easier to hunt down a caviar wholesaler. I should amend, only two of my three teens eat it. One is vegetarian. Keeps the bill down when we (very occasionally) splurge on sushi LOL.

viewtopic.php?f=16&t=6966&p=74064&hilit=fish+oils#p74064


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