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.