She seemed cured, then she wasn't

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Post Reply
AerwykF
Contributor
Contributor
Posts: 6
Joined: Tue Nov 05, 2019 5:57 pm

She seemed cured, then she wasn't

Post by AerwykF »

Hello Gang, I show up again....

After 4 years of trying to defeat my wife's insulin level, we were victorious. She's E4 Alzheimer's. With the insulin
lowered, her new memory took off like a rocket. She was remembering everything! Now, three weeks later, it's
the same old story, she remembers very little. Frequently, she doesn't remember what she just said. I have a
glucose/ketone meter. While not perfect, the readings are close enough. We get essentially the same readings now
that we got when her memory returned -moderately lowered glucose, moderately high ketones. If anyone wants
numbers, I kept a record. We are scheduled to get glucose, insulin, ketone and A1C scores at the laboratory tomorrow.

Once her memory returned, I was careful to try to keep everything the same as to what produced the
breakthrough. My reasoning is that a moderately high ketone score doesn't allow for a very high insulin score. But, then on various occasions before, I have been known to be wrong. This is so heart breaking. Any thoughts of what has occurred would be helpful. You can get a good idea about our fight from my previous postings.

God bless you all,
Aerwyk
TLS
Contributor
Contributor
Posts: 77
Joined: Thu Jan 05, 2017 6:29 am

Re: She seemed cured, then she wasn't

Post by TLS »

While I don't have an answer to your specific question, I can tell you that my mother who has Alzheimers has good and bad days. I am not sure what drives it. I would say, stick with the program and hope things go in the right direction where she has some more good days.

Another possibility is to review the medications and supplements she is on. Sleep is important too.

Best of luck and hopefully someone on the forum has more information.
apoe 3/4
NF52
Support Team
Support Team
Posts: 2772
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: She seemed cured, then she wasn't

Post by NF52 »

AerwykF wrote: Sun May 28, 2023 6:13 pm Hello Gang, I show up again....

After 4 years of trying to defeat my wife's insulin level, we were victorious. She's E4 Alzheimer's. With the insulin
lowered, her new memory took off like a rocket. She was remembering everything! Now, three weeks later, it's
the same old story, she remembers very little. Frequently, she doesn't remember what she just said. I have a
glucose/ketone meter. While not perfect, the readings are close enough. We get essentially the same readings now
that we got when her memory returned -moderately lowered glucose, moderately high ketones. If anyone wants
numbers, I kept a record. We are scheduled to get glucose, insulin, ketone and A1C scores at the laboratory tomorrow.

Once her memory returned, I was careful to try to keep everything the same as to what produced the
breakthrough. My reasoning is that a moderately high ketone score doesn't allow for a very high insulin score. But, then on various occasions before, I have been known to be wrong. This is so heart breaking. Any thoughts of what has occurred would be helpful. You can get a good idea about our fight from my previous postings.

God bless you all,
Aerwyk
So nice to hear from you again Aerwyk!

I hope that life in Panama provides some beauty and peace to your wife, who is so lucky to have you as a devoted, NIH/PubMed reading husband! I too have been known to get immersed in topics above my pay and knowledge grade on the sites, and have gained a great appreciation for just how complex any question of Alzheimer's can become.

If my math is correct, you are now 87 or 88. At age 71, I can only hope to be as intellectually curious as you--if I make it to that age! So I won't minimize your wife's "sliding downhill with a few interruptions" as you described a few years ago. It must be heartbreaking to try everything available to you and still see those changes.

Yet I would gently suggest that she too has a resilient brain--even if she's not able to read NIH documents. If she is about your age, with one copy of ApoE 4, she has outlived most people without ApoE4 of your generation. I'm guessing she had lots of cognitive reserve (intelligence, education, adult-life learning), good health habits and little to no coronary artery or vascular disease when she first began showing changes.

I get to talk with and watch presentations from Alzheimer's researchers as a member of the ACTC Research Participant Advisory Board and a Consumer Reviewer on Dept. of Defense grants for Alzheimer's research. What they say again and again is that ALL people with dementia in their 80's have a mixed presentation with multiple co-morbidities: senescent cells, amyloid and tau plaques, misfolded TDP-43 and alpha-synuclein proteins, seen in Parkinson's and Lewy body dementia, and aging blood vessels, with weak walls on the miles of micro-vessels in the brain. All of that makes changing the direction of changes more difficult, although ALL the researchers also say that changes seem to happen more slowly, similar to how cancer in people in their 80's may be something they die with, not from.

Her leap in memory skills is wonderful, even if transitory. Like chemo treatments that cannot stem the insidious nature of cancer cells, or metabolisms that fight against people's efforts to lose weight and keep it off, it may be that the connections re-tooled were fragile and couldn't hold for long. Of course, you've probably considered other questions: Is her protein intake on ketosis still adequate, are her B-12 levels good, is she sleeping okay?

I'm not one to recommend giving up the fight (I'm in a clinical trial for prevention of AD right now, even knowing it poses some risk to me with ApoE 4/4), but I also have had heart-to-heart talks with my wonderful husband about my values and preferences if I end up living with, and progressing onto later stages of AD.

Even when our memories fade and new ones are fleeting, we will still have the ability to recognize the kind voice, touch and support of a beloved husband. Wishing you moments of joy on this path.

Nancy
4/4 and still an optimist!
mike
Senior Contributor
Senior Contributor
Posts: 851
Joined: Fri Mar 09, 2018 4:55 pm
Location: CA - Sonoma County

Re: She seemed cured, then she wasn't

Post by mike »

AerwykF wrote: Sun May 28, 2023 6:13 pm Once her memory returned, I was careful to try to keep everything the same as to what produced the
breakthrough. My reasoning is that a moderately high ketone score doesn't allow for a very high insulin score. But, then on various occasions before, I have been known to be wrong. This is so heart breaking. Any thoughts of what has occurred would be helpful. You can get a good idea about our fight from my previous postings.
It could be that with good ketones she is getting more fuel to the brain and that might improve things. Were her ketones higher when her memory returned?
Sonoma Mike
4/4
User avatar
TCHC
Contributor
Contributor
Posts: 109
Joined: Mon May 02, 2022 6:56 am
Location: UK
Contact:

Re: She seemed cured, then she wasn't

Post by TCHC »

Hi AerwykF

How strange! But I'd take that as great news that she was able to improve. That sounds like her neuroplasticity is good and that what she's done once, she can achieve again.
How did the labs come out?
You didn't mention if you're sticking well to the Bredesen 7 - which are the good/tricky areas for you?

Lindsey
TCHC - Lindsey Byrne - The Cognitive Health Coach - UK
Functional Medicine Certified Health Coach (FMCHC)
Certified Re:CODE 2.0 Health Coach
AerwykF
Contributor
Contributor
Posts: 6
Joined: Tue Nov 05, 2019 5:57 pm

Re: She seemed cured, then she wasn't

Post by AerwykF »

I have returned after a long hiatus and a lot of multiple computer problems. I did read Nancy's reply. It floored me.
It had so many faces to it. One moment, as I read, it was like words from my mother. Then, a best friend, then an old girlfriend and on and on. I have read it many times. I printed it out before my computer problems occurred. I cherish it.

Now the latest:

Eventually, I got things on track. I got her to remember things from yesterday and the day before that.. And, even offer
memories on her own. She suffers from berberine headaches; sometimes rather badly. Any ideas? I really don't
like to jump on the ibuprofen or amphetamine train. I've been using aspirin, but that has it's limitations as well.
There's a number of other issues as well. The present doctor wants us to discontinue berberine and take
metformin once a day for a month to let my wife recover from the headaches and some afternoon cortisol problems.

I demurred but she insisted. This has resulted in a memory that lasts 10 to 14 seconds. I've timed it. She doesn't
seemed to think insulin is not that much of a problem. In my opinion, the insulin is the problem and is "eating" my wife's brain. I gave the doctor a copy of Bredesen's first book, which she has read. Frankly, I terrified of this. I believe the first step is to attack/treat the insulin problem, then at the same time any other problem, She is more interested in my wife's glucose numbers. I told her they don't matter as long as she has the ketones to compensate. She did not like that at all and does not believe it's possible. My take on this is that insulin leads the way; not glucose. When we discussed fasting and low carb/high fat diet, she remarked, "Vegetable fat of course". I told her no, not vegetable fat, animal fat. She thought that absolutely incredulous and talked about all kinds of problems with cholesterol and saturated fats. She felt the same way when I told her about the British guy that fasted for over a year and finished with a glucose number under 5 and was completely normal - no hypoglycemia.

In the meantime, I'm going back to the routine that got my wife's memory back to the length I mentioned
above; glucose numbers be damned. By the way, I monitor all of this. I use a Keto Mojo meter. I have a fairly good medical memory, but not one to be able to discourse with her at length.

As a young guy of 85 years, I tend to have frequent senior moments; any suggestions on? There's more, but my
wife is calling me for dinner. God bless all o you out there. Aerwyk
User avatar
Tincup
Mod
Mod
Posts: 3558
Joined: Fri Aug 08, 2014 2:57 pm
Location: Front Range, CO

Re: She seemed cured, then she wasn't

Post by Tincup »

AerwykF wrote: Thu Aug 17, 2023 3:21 pm She doesn't seemed to think insulin is not that much of a problem. In my opinion, the insulin is the problem and is "eating" my wife's brain. I gave the doctor a copy of Bredesen's first book, which she has read. Frankly, I terrified of this. I believe the first step is to attack/treat the insulin problem, then at the same time any other problem, She is more interested in my wife's glucose numbers. I told her they don't matter as long as she has the ketones to compensate. She did not like that at all and does not believe it's possible.
Do you have copies of any of the George Cahill & associates studies from the 1960's? From memory, they had obese guys they fasted for 40 days, then injected insulin dropping their glucose to an average of 18 mg/dL. They had no cognitive symptoms at all. In my case, I once dropped my glucose to 32 mg/dL. To make a point, I went to the gym and set PR's on my lifts. When I told a neurologist climbing partner of this experience, he replied that he'd only comatose people with glucose in the 30's. I replied they obviously weren't adapted.

Here are some links from Drs Cahill as well as Veech :
https://coconutketones.com/wp-content/u ... erfuel.pdf
https://coconutketones.com/wp-content/u ... 01_241.pdf
https://coconutketones.com/wp-content/u ... bolism.pdf
https://coconutketones.com/wp-content/u ... n_1967.pdf
https://coconutketones.com/wp-content/u ... cover1.pdf
https://coconutketones.com/wp-content/u ... n_2005.pdf

You might find others you are interested in, here is Dr. Mary Newport's repository:
https://coconutketones.com/scientific-research/
Tincup
E3,E4
NF52
Support Team
Support Team
Posts: 2772
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: She seemed cured, then she wasn't

Post by NF52 »

AerwykF wrote: Thu Aug 17, 2023 3:21 pm I have returned after a long hiatus and a lot of multiple computer problems. I did read Nancy's reply. It floored me.
It had so many faces to it. One moment, as I read, it was like words from my mother. Then, a best friend, then an old girlfriend and on and on. I have read it many times. I printed it out before my computer problems occurred. I cherish it.

Now the latest:

Eventually, I got things on track. I got her to remember things from yesterday and the day before that.. And, even offer
memories on her own. She suffers from berberine headaches; sometimes rather badly. Any ideas? I really don't
like to jump on the ibuprofen or amphetamine train. I've been using aspirin, but that has it's limitations as well.
There's a number of other issues as well. The present doctor wants us to discontinue berberine and take
metformin once a day for a month to let my wife recover from the headaches and some afternoon cortisol problems.

I demurred but she insisted. This has resulted in a memory that lasts 10 to 14 seconds. I've timed it. She doesn't
seemed to think insulin is not that much of a problem. In my opinion, the insulin is the problem and is "eating" my wife's brain. I gave the doctor a copy of Bredesen's first book, which she has read. Frankly, I terrified of this. I believe the first step is to attack/treat the insulin problem, then at the same time any other problem, She is more interested in my wife's glucose numbers. I told her they don't matter as long as she has the ketones to compensate. She did not like that at all and does not believe it's possible. My take on this is that insulin leads the way; not glucose. When we discussed fasting and low carb/high fat diet, she remarked, "Vegetable fat of course". I told her no, not vegetable fat, animal fat. She thought that absolutely incredulous and talked about all kinds of problems with cholesterol and saturated fats. She felt the same way when I told her about the British guy that fasted for over a year and finished with a glucose number under 5 and was completely normal - no hypoglycemia.

In the meantime, I'm going back to the routine that got my wife's memory back to the length I mentioned
above; glucose numbers be damned. By the way, I monitor all of this. I use a Keto Mojo meter. I have a fairly good medical memory, but not one to be able to discourse with her at length.

As a young guy of 85 years, I tend to have frequent senior moments; any suggestions on? There's more, but my
wife is calling me for dinner. God bless all o you out there. Aerwyk
Hello, my young friend of 85,

Apologies for adding a few years to your age before; apparently this English major was wise to steer clear of math! Warm thanks for your kind comments on my post. You cherish my reply; I will cherish yours. (And I have to believe that at least one of the people you referenced tended to be long-winded as I tend to be--and that you were also patient with them.)

I have no ability to offer advice on the insulin/ketone/glucose issues--so will probably foolishly venture into a question you didn't pose: Which makes more difference to your wife's experience or quality of life- her headaches or cortisol issues or her memory? If she is agitated because she can't remember things, then whatever you can do to help that would improve her quality of life. If the headaches left her in frequent and debilitating pain, she might have seen the loss of memory that you find terrifying as a welcome tradeoff, especially if she seems unaware of the change.

If she is experiencing headaches, do you know for sure that they are from berberine because they ended when you stopped using that? Has the doctor discussed other possible reasons for the headaches (muscle or arthritic changes, vascular issues, edema, sinus or salivary gland infections?) Is your wife able to describe where they are located and what they feel like (pressure, pulsing, throbbing) or rate them on a 1-10 scale (10 being "the worst headache I've ever had)? If the headaches had a cause other than berberine, it might be possible to address that cause, and reinstitute berberine along with a ketogenic diet.

As your wife's care partner for these last 4 years or so, you have every right to choose how and whether she has various medications. So don't worry about whether your medical discourse matches the doctor's--focus on meeting your wife where she is today--and striving for a return of those days of remembering events. One way to help her long-term memory enjoy a breath of fresh air, even if she short-term memory seems to have left the room, would be to use music from her young adulthood, or pictures of her or her childhood community or home, or even ask about relatives and friends (even boyfriends) you never met. Memories from 50-70 years ago, particularly ones associated with sense memories or strong emotions, are likely to have well-trod neural paths she can still access. My mother shared some amazing--and long-held--stories of colorful relatives that I knew had to be true based on some family gossip in her 80's. I believe that her brain only allowed them to come out once she was not focused on remembering the nightly news verbatim. She also loved looking at a Renoir museum exhibit around that time, not long before she forgot that my dad had died 20 years before and called to ask where he was. It was a bittersweet time, but also sometimes lightened by laughter, that I would not have thought possible before experiencing it.

And I don't believe for a NY minute that your "senior moments" would keep you from living a full life--but if you want a suggestion, every researcher I read and hear puts exercise (cardio/strength training/weight bearing) of any duration and intensity at the top of their "help your heart/help your brain" list.

Nancy
4/4 and still an optimist!
Post Reply