Lisa in LJ

[Lisa in LJ]

My mother, who is 73, is the current patient. She has had memory issues for about 6-8 years. Her previous Neurologist said it was non-Alzheimer's dementia. I'm not sure how he decided that as he didn't do any specific tests. He said it was because when he prompted her to remember things, she could do so, and that's not possible with Alzheimer's. She's since moved and her new Neurologist disagrees with that statement. She has been on Aricept and Namenda for about 3 years. She refused prior to that as she said that her memory problems were normal aging. She scored 22/30 on the one test this year. Two years ago it was 26/30. She drew the clock almost perfectly, but reversed the hour and minute hands, although she has no problem telling time. This Neurologist ordered several blood tests to rule out different things and the APOE. Everything was normal, but her APOE was 4/4 so she's in the "lucky" 2-5%. Of course that means that all 3 of her children also have at least one APOE4. Her mother lived to be 100 with no significant memory issues. Her father died at 58 from a heart attack, had no memory issues, but was a heavy drinker. My mother is in excellent physical health. She is not overweight, has never smoked, never drank more than a rare glass of wine, and used to run marathons. Until about 6 months ago, she walked about 3 miles a day. She had surgery on her Achilles and hasn't been able to walk as much while it recovers, which can take at least a year. Of course my greatest fear is that her body will live to be 100 like her mother and her brain will stop at 80. Her physician started her on Axona so hopefully that will be some kind of miracle. Other than that, I guess we'll just keep watching it deteriorate.

Knowing I have at least one APOE4, I now have a great reason to take better care of myself. I'm 52, not overweight and have never been more than 15 pounds overweight, but I don't get enough exercise. I eat a fairly good diet, but it can be better. I've had my share of health issues - a mechanical mitral valve at 36 due to Rheumatic Fever when I was 14, controlled high blood pressure since I was a teenager, and Lymphocytic Colitis are the biggies. I've had high cholesterol since the first time I ever had it checked in my 20s. I've never taken anything for it as I've heard there are links between Statins and memory problems. Before I had my heart surgery at 36, I had a cardiac cath and it showed no blockages. I've never had any reason to think I have blockages now. I'm really of the mind that the whole high cholesterol kick has been a way for drug companies to make money. I take Coumadin (Warfarin) because of the mechanical heart valve, Cholestid (a bile blocker) for Lymphocytic Colitis, Benazepril HCTZ for my blood pressure, and Vitamin D because I was once extremely low.

As I read more about APOE4, I'm finding that I have a lot of risk factors. First, I've had at least 4 autoimmune diseases and my Rheumatoid Factor and ANA are high. I also have inflammation that goes along with autoimmune diseases. Second, I've had high LDL for a long time with no corresponding heart disease. Third, I had an extremely low Vitamin D level. I'm sure there are more.

I'm not going to have my APOE tested yet. Knowing I have at least one APOE4 is as much as I can handle and I really wouldn't do anything different if I found out I was 2/4, 3/4, or 4/4.

So, I'm here to learn and to get some support. I'm new at this so it might take awhile.

[Welcomeaboard]

Welcome to the forum.

[Stavia]

Hi Lisa, welcome. Settle in, there's a lot to read through. If you would like to see the full text of any paper PM me.

[Julie G]

Welcome Lisa! I'm so sorry to hear about your Mom. I'm hopeful that the Axona (especially started this early) will prove helpful. I'm proud of you for recognizing the potential danger your E4 represents and for taking steps to minimize your risks.

I would love to hear more about your Grandmother, who was an ?/4 and lived to 100 cognitively intact. Tell us about her lifestyle/diet. It sounds like you've also got some pretty strong protective genes too

I basically agree with you re. your APOE genotype. Learning you were a 4/2 might be important. E2s are particularly carb intolerant AND the 2/4 combo would put you still about average risk of AD. That might offer you some degree of relief...

[Lisa in LJ]

I found my most recent test results from November, 2013.

Cholesterol 348
Triglycerides 238
HDL 74
LDL, Direct 251
Chol/HDL Ratio 4.7

ANA Screen Positive
ANA Titer 1:160 (I think this is negative?)
Nuclear Pattern Homogeneous

Neutrophil % and Bilirubin showed as slightly high. Choloride was slightly low.

Hepatitis B Core Total Ab and Hepatitis B Surface Ab were Reactive. Everything else on the Hepatitis Panel was normal. Apparently I had Hepatitis B at some point in my life, but I don't know when. Possibly when I was working as a Phlebotomist when I was a teenager or when I worked for the prison system hospital when I was in my mid-20s.

[Lisa in LJ]

I would love to hear more about your Grandmother, who was an ?/4 and lived to 100 cognitively intact. Tell us about her lifestyle/diet. It sounds like you've also got some pretty strong protective genes too

My grandmother grew up in a large family (10 kids) in Arkansas. 2 of the 10 kids lived to their late 70s, 5 lived into their late 80s/early 90s, one is still alive at 96, and my grandmother lived to 100. One died as a young man in WW2. None had memory issues or heart disease. All except 2 had various types of cancer. My grandmother beat two bouts with breast cancer and several skin cancers of all types. She moved with her family to West Texas as a teenager. She went to Business School and worked as a Secretary. She moved to Louisiana when she got married and started working at Ft Polk as a secretary during WW2. Later, they moved to Kentucky and she worked at a college as the switchboard operator. Always sedentery jobs and she worked until she was 78. Her diet was whatever she wanted, but she liked fried foods and spicy foods. She was a Southern girl and liked Southern foods, which aren't known for being especially healthy. As she got older, she ate a cereal "cocktail" for breakfast every morning - Grape Nuts, All Bran, something like Special K, and banana, strawberry, or blueberries. She also enjoyed her wine and butter pecan ice cream! She walked quite a bit, even as she got older. After she retired, she moved to Williamsburg, VA with my uncle. For awhile, she volunteered at some of the government offices in the area, driving the "older ladies" around. (That's kind of scary because she wasn't a great driver, ever!) At 97, her body was aging quickly and she moved to a nursing home. She became blind at 99 for no apparent reason. She did have failing memory in the last 3 years, but could always do Math in her head, read until she became blind, and could hold conversations.

[Julie G]

Hey Lisa, thanks for sharing biomarkers. Here is a link to a spreadsheet where other members of our community have added their numbers. Feel free to plug in whatever numbers you have: https://wiki.apoe4.info/wiki/index.php?title=Biomarkers if you need help, just ask. Someone can do it for you.

With higher lipid numbers, it's really important to keep blood glucose and inflammation markers low. Do you know your fasting blood glucose or A1C? A good test to gauge inflammation would be a homocysteine test. These are all basic tests your family doctor can run to help you track and monitor your progress.

It's really interesting to hear about your Grandmother's diet and lifestyle. No doubt her many years of working and staying actively engaged help her build reserve and maintain her cognition. Spicy good is also supposed to be very protective. Wouldn't it be amazing if new research revealed fried chicken, biscuits, and gravy prevents Alzheimer's? My fingers are crossed.

I like your Grandmother's spunk. The visual of her driving the older ladies around makes me smile Thank you for sharing.

[Lisa in LJ]

With higher lipid numbers, it's really important to keep blood glucose and inflammation markers low. Do you know your fasting blood glucose or A1C? A good test to gauge inflammation would be a homocysteine test.

My fasting glucose has always been normal, except when I was pregnant and had Gestational Diabetes. It went back to normal once my baby was born. I don't know that I've ever had a homocysteine test. I had several sed rates when I had Rheumatic Fever, and again after my heart surgery when I had Pericarditis, which also measures inflammation. The problem with having auto immune diseases is that they all cause inflammatory response of the immune system, so my guess is that any test I have would be high. My lymphocytic colitis is not in remission and it definitely causes an inflammatory response. However, I'll ask my doctor about it.

[RedNailz]

Welcome, Lisa! Thanks for telling us about your grandmother. We really like stories about E4's that stay sharp in their later years!

[Sandraz]

Hi Lisa,
You will find all kinds of info here. It is awesome!
I read about your mom being on axona, which I know is expensive. The thing in it that is supposed to help are MCT's (medium chain triglycerides). You can buy for less money, coconut oil that is 65% MCT or buy purified MCT oil on line or at some stores like whole foods.

I just did a continuing education on natural ways to help AD and here is the part on MCT and ketones:

"Medium chain triglycerides (MCTs) have been getting a lot of attention as a potential treatment for Alzheimer’s disease. Some research suggests that there is decreased metabolism in some parts of the brain in patients with Alzheimer’s disease. The brain primarily utilizes glucose as an energy source, but at times of fasting it can use ketone bodies such as beta-hydroxybutyrate, acetoacetate, and acetone. Taking MCTs increases levels of ketone bodies. Therefore, it is theorized that taking MCTs might improve energy metabolism in the brain and improve symptoms of Alzheimer’s disease.17028 Ketone bodies produced by consuming MCTs might also inhibit beta-amyloid damage in the brain.17029

Clinical research evaluating MCTs has involved a specific medical food called Axona. One preliminary clinical trial shows that taking Axona 20 grams daily does not significantly improve cognitive function in patients with mild to moderate Alzheimer’s disease compared to placebo after 90 days of treatment. However, in a subgroup of these patients with the APOE4 gene variant, taking this product did significantly improve cognitive scores compared to placebo.17028 Another preliminary clinical study shows that a single dose of this same MCT-containing product improves measures of cognitive function in patients with the APOE4 gene variant, but not in patients without the gene variant.17029"


Notice the mention of apoe4 being the only subgroup that MCT OIL helped! I personally take 1/2 to 1 TB of it daily to help me stay in ketosis on a low carb diet in hopes of preventing AD and keeping my blood sugar down.