New to the list

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Lindy
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New to the list

Postby Lindy » Sun Feb 11, 2018 7:34 am

Hello, I have lurked a bit here wanting to post a cheery intro, but I’m just not feeling that chipper right now. Thank you to Julie and Stavia and all the moderators for creating such a great web resource. I have read the Primer.

I was recently diagnosed E4/E4 (less than two weeks ago). My beloved father died of AD two years ago and I resemble him in a lot of ways (except diet – he was a lifelong junk food junkie and I have been a nutrition label-obsessed organic vegetarian/vegan, with a bit of cold water fish, for more than 20 years). Having supported my father emotionally and physically through much of his decline, watching his normally cheerful face crumple when he thought I wasn’t looking, I have no love for the disease and want it wiped off the face of the earth.

At 58, 3 years ago, I was already experiencing so many “senior moments” that I could not maintain my demanding high-flying academic career, which needed me to be at the top of my game. My husband was my guardian angel, persuading me to come back to our home base (he had held down the fort at home while I pursued my pinnacle job across the country). Having Skyped with me every night for the three years, he had been a great support through my round of medical specialists (ENTs, cardiologists, neurologists, cognitive behavioral therapist) as I tried to figure out why I was losing my grip – undiagnosed sleep apnea turned out to be a part of that, though I had some abnormal Holter results. Eventually my hubby persuaded me to come home and take a break.

I have now spent three more years being an unpaid support person for dying relatives (including my father), volunteering on charity boards, writing a book with colleagues, regaining my health, and finding my footing, though the memory and confusion issues persisted. I took Food for the Brain's online cognitive function test for the past three years and was shocked to be ranked in 36th percentile in 2015, 51 in 2016 (after following FB's protocols), and 40.25 in November 2017. I'm sure you can imagine how I felt about this and I know some of you have fought your way back, so your stories are an inspiration.

Soon after my first test I consulted a memory clinic here at home, was tested as "normal," and signed up for AD drug trials. I was kicked out of the first one for elevated GGT and a long QT interval according to the drug trial standards (though not clinically significant). Now that I’ve had the genetic results I am qualified for another drug trial. I intend to pursue it because I want AD stamped out in my lifetime and if being a guinea pig will help the chances for my children, a guinea pig I will be.

Due to a sudden departmental reform, my husband’s steady professional job and medical insurance is now in jeopardy after almost 30 years. The announcement of this occurred about the same time as my gene test results – a double whammy for us. We can’t access our retirement funds yet, so it’s a scary time. It’s possible he may keep his job, but age discrimination has become endemic in his field (my sister who also works in healthcare was laid off last year, along with other senior members of her department.)

Although I’m now running a nonprofit (as a volunteer), I will need to find a paying job to give us a buffer in case my husband loses his. I’m trying to be his emotional support now, while coping with my E4/E4 status.

The day I received my results, I immediately bought and read “The End of Alzheimer’s.” I started out determined to be proactive and make lists of things to eat and compare protocols, but recently I find myself sinking into despair because of all the contradictory information (from Dr. Gundry and others) that makes it seem like there is no clear bright line to follow. Eating lots of saturated fats, even plant-based, seems a scary move after many years of eating a “healthy” vegan or vegetarian diet that avoided sat fat and supplemented with whole-food vitamins. I’m a little concerned about entering ketosis because, after losing 30 pounds with the help of Cronometer over the past year, my BMI is 20.4 and I already feel as though I don’t have all the fat reserves I might need in case of an illness. Adding more exercise on top of that and I am having trouble every day getting enough calories to prevent further weight loss. Although I don’t have anorexia, I’m worried I might experience similar effects.

I wake up with heart racing every night (hence I am posting this in the wee hours), although to be honest I did that before the diagnosis and my husband’s situation, mainly due to concerns about my family, work stress, and my stalled career. I have a monthly therapy visit, my sleep apnea has been well controlled with an APAP over the last couple of years, and I take melatonin and magnesium before bed, but my sleep has been very disturbed since the big reveal (and to be honest, wasn’t always the best). I have been on atorvastatin and losartan potassium for quite a while and am now experimenting with not taking them. I haven’t noticed a big change in my condition from that, but I’m a little nervous about not taking the losartan because Cronometer tracking (which I’ve done for over a year) shows that like most Americans I have not been able to meet my potassium intake requirements and there are no supplements available for more than 3% RDA. Trying the Bredersen protocol has been a challenge in the sense of cramming food. Without dairy or any sugars or convenience foods to pad the calories, it feels like I am eating a refrigerator full of vegetables and way too many nuts each day, and I’m concerned about mercury and other contaminants if I rely too heavily on fish.

In our current situation we can’t afford off-insurance testing and doctor visits, so I am relying on my wonderful young internist who is untrained in AD but willing to order blood tests.

I see that others have posted their bloodwork results. I don’t know which ones are relevant but here are mine as of November, after almost a year of diet and exercise tracking on Cronometer:

CMP: all within normal limits

CBC-AD: all within normal limits

Vitamin B-12: 834 pg/mL (180 - 914 pg/mL)

Ferritin: 43 ng/mL (10 - 291 ng/mL)

Folate: 16.3 ng/mL (>=5.9 ng/mL) (Deficient 0-3.9 ng/mL, Borderline 4.0-5.8 ng/mL, Optimal >= 5.9ng/mL)

TSH: 1.108 mU/l (0.400 - 4.00 mU/l)

Vit D2 25-Hydroxy: <1 ng/mL
Vit D3 25-Hydroxy: 35 ng/mL
Vit D Total 25-Hydroxy: 35 ng/mL (32 - 100 ng/mL) (0-14 ng/mL = Severely deficient, 15-31 ng/mL = Mildly deficient, 32-100 ng/mL = Optimal)
(Note: I didn’t notice the low D2 until I copied and pasted these results just now – is D2 significant?)

Free T4: 1.19 ng/dL (0.84 - 1.51 ng/dL)

Homocysteine Quant: 8.3 umol/L (5.0 - 14.0 umol/L)

MMA Quant Blood: 0.17 umol/L (0.00 - 0.40 umol/L)

I also had a normal brain MRI in November.

Since those all seemed to be normal, my internist thought my memory problems are related to depression. She is willing to refer me to a neurologist. I am worried about putting much into the record, though.

So, with apologies for this long rambling narrative, here are my questions:

1. Do you see any red flags among all these normal results?

2. Are there any tests other than this that I should be considering?

3. I realize a lot of you are pursuing various protocols on your own without medical oversight. It feels like a leap of faith, one that I’m uncomfortable with even though I’m trying to stick with Dr. Bredersen’s, which seems vegetarian/vegan-friendly. How did you personally choose which protocol you thought would work for you?

4. Since the inception of this list, have any of you switched protocols based on newer information? How did that affect you?

5. How did those of you with a sweet tooth manage the transition away from all sugars? Are there any "healthy" sugars that I could sneak in? I got rid of the ice cream in the freezer. :-( I am trying to limit fruit to 2 low-glycemic servings a day, but it feels like a deprivation.

6. How do you keep your spirits up and manage stress when you have a bad cognition day?
APOE-ε4/ε4 on the voyage of discovery.

NF52
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Re: New to the list

Postby NF52 » Sun Feb 11, 2018 9:57 am

Lindy wrote:How do you keep your spirits up and manage stress when you have a bad cognition day?


Dear Lindy,
As a soon-to-be-66 year old with ApoE 4/4, I have days (and nights) like yours, and I and some of my ApoE 4/4 friends have had some of the same challenges in jobs, cross-country commutes and family care-giving challenges. So I send you hugs first and always. You are going to feel better! We are here to support you while you get there and beyond.

My answer to your last question, which may be the most important question you posed, is this:
"I have been, and continue to be, a woman with many good qualities. I am wise in some things I have studied, and curious about many I have not. I have learned compassion and acceptance from caring for others, and the effects of the stress that caused has dissipated over time. My memory is not what it was, but my reasoning, problem-solving, judgment, use of heuristics and strategies--these things have been honed over years and will serve me well for years to come. Most of all, I have a husband, and children and grandchildren who give me love and hope that what I do will teach them about embracing life in all its forms. The Stoics say we can work hard to make the journey a great one; we cannot choose the outcome of the journey."

And then of course, I sometimes just give myself permission to be mightily pissed about it all!

P.S. I am in a clinical trial; it's one of the best things I've done for myself, since I enjoy the people at the site, enjoy reading research articles, and get to combine sight-seeing and "son-seeing" when I visit the site. Good luck on your recent acceptance into a trial.
4/4 and still an optimist!

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SusanJ
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Re: New to the list

Postby SusanJ » Sun Feb 11, 2018 10:59 am

Hi, Lindy, and first off welcome. Sorry you have faced so many challenges. And good for you that you have been interested in your own health and done a lot of reading!

Lindy wrote:How did you personally choose which protocol you thought would work for you?


I started many years ago, before anyone had a protocol, before functional medicine, by working with an integrative doctor who actually didn't test much or push supplements. He went by how one felt. Gluten makes your joints ache? Throw it out of your diet. Stressed? Take up meditation and yoga. And eat some meat now and then. (At the time, I ate a lot like you do now, vegan with some fish and for me, eggs.) And his advice helped, a lot. Since then, I did genetic testing and found out about E4, and MTHFR and a handful of other bad gene actors, so have spent more time understanding what my specific genes suggest I should be doing for optimum health.

And just a couple of off-the-top observations.

Not sure where you got the idea that you should eat more saturated fats. Bredesen, for example, says use MCT oil to make the shift to creating ketones, but encourages healthy mono-saturates like avocado, EVOO and nuts for the long run. Many of us see shifts in lipid panels with the addition of saturated fats, some good, some bad, so it differs between folks.

Eating a mostly vegan diet, do you know if you are getting enough choline, or are you supplementing choline is some manner? I ask because you need choline to make acetylcholine and other useful biochemicals needed for good brain function. (And a deficit can lead to depression.) Being under stress can make you burn through both methyl groups (B vitamins) and choline.

And stress, yep, it will throw every metabolic and neurotransmitter process out of whack. (I know, just saying you have to manage stress feels, well, stressful!) When I have an off day, I always ask, did I get enough sleep? Am I stressed about something? And have eaten reasonably well? Instead of thinking your memory is bad, maybe shift your focus to fixing what isn't working for that one day? String those actions together and you might find strategies that help you improve over time.

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Jan
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Re: New to the list

Postby Jan » Sun Feb 11, 2018 11:20 am

Hi Lindy ... welcome to the site! I am particularly glad you found us, as I know we have site members who have encountered - and gotten through - similar situations. I am encouraged at the high level of cognitive reserves I sense that you have. Through your words I can clearly see the stress that you are currently experiencing, but overriding - and corralling - that stress, I see character strengths of perseverance and hope. And I note the strong force of family that undergirds your overall path.

Concerning your lab results, I'm not medically trained so cannot give a recommendation. My thoughts are that some of your levels seem to vary from what I believe Dr. Bredesen recommends in his book. I think that he would probably say that your homocysteine is high (page 176 - "if ... over 6..."); Vitamin D3 is somewhat low (pages 126-7 - "50-80"); and thyroid is not optimal (pages 128-9 - Free T4 - "1.3 to 1.8"). But those are only guesses on my part.

Concerning sugar cravings, some people report that using spices - particularly cinnamon - helps with cravings. I would encourage you to experiment with many spices to find one that helps in your case. Others say that drinking water immediately upon feeling a sugar craving, can actually stop the craving. I personally find that allowing my mind to 'ruminate' about something can bring on a sugar craving - so, I give myself one minute to ruminate, and come up with a diverting task during that one minute. :-) (Ahem, not always successful ...)

When you get a chance to read more of the threads on the site, I think you will see that what might look like a leap of faith is actually a reasoned, definite, articulate choice. There are many 'citizen scientists' on this site. Some 'follow' a particular path, but virtually all 'question' every path. There are very few things that truly are 'definite' or 'settled.' (Stavia's Primer does an excellent job of clearly stating if something is 'settled' or not.) I don't think that there is one diet that is perfect for everyone, but I think there is one diet that would be perfect for each person. It's just up to that person to figure it out. :-)

You have many kindred spirits on this site. Strong individuals who are happy to share, and to help. We are glad to have you among us.
mrc cfnc fmchc
IFM/Bredesen Reversing Cognitive Decline training 2017
E2/E2
What is, is. What is, can be changed.

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Re: New to the list

Postby Fiver » Sun Feb 11, 2018 2:25 pm

Hi Lindy. Sympathies. I can understand some of your worries. You'll get great advice here and be able to expand a bit beyond just what is in Bredesen's book (which is a lot, though). I'm not a medical doctor but my experiences with family and Bredesen-trained docs is that they would want your vitamin D up: 50-80 is a commonly mentioned range, though latelyI've heard 75-100 some. And that's easy. Just research supplement dosages. I'd guess that +2500 IUs would put you ~75. Hmmm. Better check with your doctor to be sure. Otherwise, I'd suggest that maybe tou don't have quite enough data to know if you have an inflammation problem or a low trophic support (hormones) problem. I didn't see fasting glucose or insulin, though with your great diet they are probably ok.

You're a hero for what you've done for your family members and your desire to enter a clinical trial.

Diet-wise you seem to have years of good eating in your favor. The specifics of some diets differ but all are rich in veggies, low in excess sugar, and good about omega-3s. You've had all that covered for years right? That's awesome! I also work to tweek my diet and lower the sat fats - a work in progress. But, heck, it's sooooooo much better than a "normal" diet. I miss crunchy food. But I have no real sugar cravings and do really well in a little ketosis.

Emotionally, I have it much easier than most here. Helping to care for my mom - who is too far advanced for any of this protocol. I'm just determined that I'll do all I can to improve the odds for the rest of the family. I also enjoy the science - reading journal articles is my nerd hobby.

Sorry. That was a long post....
Concerned, but hopeful. Introverted, but will talk about science.

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Re: New to the list

Postby KatieS » Sun Feb 11, 2018 5:00 pm

Hi Lindy, I agree that your vitamin D could be higher. Are you supplementing vitaminD with K2?
Do you have a APAP machine that you can immediately access your data? Waking up at night with your heart racing can be the adrenalin surge from hypoxia, so your data might reveal areas to tweak your machine for optimal treatment. Although I have been on APAP for over six years now, I still have to tweak my machine, particularly recently due to family stress. With your 30# weight loss, your doctor might want to re-adjust the pressure, since too high can cause awakenings. Possibly like you, I think sleep apnea lead to me opt for earlier retirement. Particularly if your sleep apnea had significant desaturations, the brain takes years to heal. Please feel free to PM me if I can help.
I also take a statin, experimenting with one that seems to not affect my memory and might even have evidence of AD benefit. Presumably you're on losartan for hypertension, which is likely to be a good drug to preserve good cerebral blood flow. Most of the studies find that most anti-hypertensives lower AD risks, since controlled blood pressure lessens the co-morbid vascular damage.

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Re: New to the list

Postby slacker » Sun Feb 11, 2018 5:36 pm

Hi Lindy;

More comments to your initial post, mostly adding to the good advice already given by other members.

Vitamin D target is total (D2 plus D3). D2 is considered a less bioavailable form of D, so a low level of it is not of concern.
Jan is spot on about looking at optimal levels of blood tests versus "normal range." Consulting with Dr Bredesen in book form is helpful with this. There is a lot of information in the wiki on how to improve homocysteine, but I'm not sure this is job one for you at this point.

Your glucose must have been in the normal range in your CMP blood test, but other tests like HgA1C, fasting insulin, and triglycerides give more in depth information about your insulin resistance state. Figuring this out is probably one of the most important steps. Given your underweight status, IR is possible but much less likely. Getting to a more normal weight, for you, is important. Doing this with more unsaturated plant fats like avocado, olive oil, and nuts is idea. A little coconut is fine. Eat some fatty fish if you are willing - it will also provide some DHA omega 3 fatty acid, which is considered important for brain health.

Consider reviewing the primer on recommended lab tests, stress management, and sleep.

I am also a sugar-holic. I like Jan's suggestion about cinnamon. You might want to try cocoa nibs; they are sugar free (unless the sugar is added.) I get mine from Trader Joe's. I find that if I can avoid sweets for a few days, I lose my cravings. I have very few sweets in the house, where I have some control. There are certain situations that make me feel that I "deserve" something sweet. Finding a substitute at these times is helpful. Sugarless gum, a cup of tea, a quick walk outside - any healthy distraction.

Keep us posted!
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Re: New to the list

Postby Searcher » Sun Feb 11, 2018 6:32 pm

NF52 wrote:How do you keep your spirits up and manage stress when you have a bad cognition day?

"I have been, and continue to be, a woman with many good qualities. I am wise in some things I have studied, and curious about many I have not. I have learned compassion and acceptance from caring for others, and the effects of the stress that caused has dissipated over time. My memory is not what it was, but my reasoning, problem-solving, judgment, use of heuristics and strategies--these things have been honed over years and will serve me well for years to come. Most of all, I have a husband, and children and grandchildren who give me love and hope that what I do will teach them about embracing life in all its forms. The Stoics say we can work hard to make the journey a great one; we cannot choose the outcome of the journey."

And then of course, I sometimes just give myself permission to be mightily pissed about it all!


Simply beautiful and wise. Thank you.

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Re: New to the list

Postby rianlees » Sun Feb 11, 2018 7:12 pm

Hi Lindy,
So great that you have come to this site, I'm sure it will become a great resource for you.I have included a link to a pubmed article on chromium and cognitive function-I noticed you mentioned sugar cravings and nutritional chromium plays an important rolein glucose metabolism and may help reduce sugar cravings, along with cinnamon as pointed out in a previous post.
You sound like a busy, highly functioning, very capable woman. I have no doubt that you have the determination to continue asking questions and seeking out the best support for yourself. From what I know about stress and sugar cravings (as a nutritionist) and what I am hearing about your personal stress levels past and present, asking how to better mangae stress and exploring ways at which you can do that may potentially have a huge impact on your wellbeing- not to mention your sleep- which of course will impact on your wellbeing. Have you ever been interested in or had success with any relaxation strategies?
I personally use an app called Breathinig Well on occassions when Iam finding it hard to get off to sleep.


https://www.ncbi.nlm.nih.gov/pubmed/20423560

Lindy
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Re: New to the list

Postby Lindy » Mon Feb 12, 2018 12:30 am

Wow! I am so grateful to all of you who welcomed me and offered your sage (even eloquent) advice. Having this kind and gentle support brings tears to my eyes. It is such a relief to have companions on this road.

It's the end of a very long day and I don't have the energy to reply to each of you individually tonight, but I will do so soon. I look forward to it. Thank you so much!
APOE-ε4/ε4 on the voyage of discovery.


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