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The End of Alzheimer's

eli395
eli395 Member Posts: 29
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Hello, i'm new here. Months ago, my husband asked if i'd research Alzheimer's for him. He's noticing some congnitive decline. i resisted but then this book came to me: "The End of Alzheimer's" by Dr. Dale E. Bredesen. i read it and am 1/2 through his next book: "The End of Alzheimer's Program". i'm wondered if anyone here has any experience with his KetoFlex12/3 program? I'm getting ready to begin experimenting with it. Peace be with us. thank you.
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  • GothicGremlin
    GothicGremlin Member Posts: 857
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    What @M1 said.

    When my sister was first diagnosed, my brother found The Bredesen stuff. To be honest it feels like Bredesen is throwing everything at the wall in hopes that something sticks.

    Bredesen's comments about best practices are good - diet, exerciese, and sleep are all hugely important, but he phrases it as if he invented best practices. He didn't. The keto diet stuff will certainly cause you to lose weight, if that's what you're after (my sister lost a good amount of weight herself after being on that diet), but it didn't do anything for her Alzheimer's.

    Then there are the scammy parts. In order to participate, you have to sign up for their $75 a month newsletter, which looked to me like articles pulled off of the internet, and prettied up into newsletter form. And you have to subscribe for a year before you can unsubscribe (ah yes, this is now reminding me to contact the CA state AGs consumer fraud office).

    If you decide to go with one of Bredesen's "practicioners", it'll cost you. I spoke with one of them and got all of their materials. If we had gone with that guy, it would have been about $5,000 just for the first month (because vitamin/mineral supplements) and other things.

    I guess I believe at its core, there are some useful bits of information, and his studies are probably useful. But man, it's all done in just the most scammy way possible.

    The reason why I know all of this is because my brother hounded me to have our sister go with the Bredesen protocols. When I did all of my due diligence on this topic, I even went deep into the wellness community. I found several personal website with people who were on the Bredesen protocols literally bragging that they'd spent $10,000 one month or $15,000 another month, and how great they all felt.

    I know these folks were acting out of fear and that's how they were justifying spending large sums of money over the course of the year. Most of them seemed to have some version of the APOE gene (based on what they said in their blog posts) which increases your chances of getting Alzheimer's.

    So yeah, in my opinion Bredesen is seeing a money making opportunity and acting on it.

  • eli395
    eli395 Member Posts: 29
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    thank you. did u read his book(s)? did u try his protocol?
  • eli395
    eli395 Member Posts: 29
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    Thank you, GothicGemlin. Good to know. I am going to give it a go w/o subscribing. We r willing to experiment for now with what i get from the Bredesen books. (Library books so no $$). I m new to keto dieting so i have to learn.

  • GothicGremlin
    GothicGremlin Member Posts: 857
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    I'm sorry if I sound harsh, I don't mean to, but even now that several years have gone by, it all still leaves a bad taste in my mouth. I just hate it when I see people take advantage of others in this way.

    The fear is real. I didn't want this for my sister, and if I had thought for even a moment that there was some hope here, I would have followed through with it.

    But yeah, the cost of a book, or getting one from the library, is absolutely worth it. At the very least it will give you peace of mind.

  • eli395
    eli395 Member Posts: 29
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    Hello GothicGremlin

    i appreciate your share of honesty & warnings.

    i know that launching into this protocol will be a full-time job and i'm willing to try the protocol the best that i can. I m curious to see if it works. Interpreting lab tests i see as a huge challenge. Working with a trained KetoFlex12/3 doc would be preferred, but is costly and insurance will probably not pay for most of the costs.

    I appreciate and understand the premise to give the Body what it needs to heal and the body's electrochemical system that can be compromised and corrected. So i'm curious to know anyone's experience in trying the protocol.

    thank you.

  • GothicGremlin
    GothicGremlin Member Posts: 857
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    @eli395 - I think the most important thing here is to have no regrets. This disease is miserable enough without wondering if you did all you could do for your LO.

  • jfkoc
    jfkoc Member Posts: 3,874
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    If it worked this site would not exist but go ahead. Let us know how it is going.

  • ImMaggieMae
    ImMaggieMae Member Posts: 1,028
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    I read the book about 5 years ago. While it has a lot of information about diet and exercise, much of it is about often expensive lab tests that should be done by one of the doctors or clinics in their program. He also recommends expensive supplements that are sold by their clinics. I haven’t read all that many of the customer reviews of the Amazon site which sells the book, but none that I’ve seen claims to have seen a cure after following the protocol. Some thought the program slowed it down, but then we all know the roller coaster nature of Alzheimer’s and how progression sometimes slows no matter what we do. If his program worked, it would be making headlines all over the world, and everyone would be doing it.

    That said, I think exercise and a healthy diet can be beneficial even if not a cure.

  • trottingalong
    trottingalong Member Posts: 413
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    Don’t do it. They prey on people who are looking for the magic cure, which does not exist. There is so much good, free information out there. I’m with all the others, beware of something that is too good to be true, and costs money to get it.

  • upstateAnn
    upstateAnn Member Posts: 103
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    I agree with much said. Three things help. Good diet, exercise, social contact. Bit there is no cure. The disease will progress. You do not have to pay for that advice.

  • eli395
    eli395 Member Posts: 29
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    Thank you all for your comments.

    Here's another question:

    Do you know of a good online support group?

    🦋

  • SSHarkey
    SSHarkey Member Posts: 298
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    This one! As you’ve noticed, everyone has chimed in with their replies and stories. Anytime someone needs help or encouragement or information, everyone shares what they know. Overall it’s a caring group of people who are in this journey together.
    As for the protocol, a friend of ours who was diagnosed at the same time as my DH and followed it for several months. Other than the benefits of healthy lifestyle as recommended, everything else was money down the drain. I spoke with his wife about it later in the progression of the disease, and she admitted that it was a Hail Mary attempt out of fear. Wasted time and money until they could accept the reality of the diagnosis and get onboard with the appropriate treatment plan.

  • Iris L.
    Iris L. Member Posts: 4,414
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    Spend time learning caregiving. Learn from Teepa Snow, the late Naomi Feil, CareBlazers and others. Learn from alz.org and the wonderful, knowledgeable members here. You cannot find better online support in all the internet!

    Iris

  • eli395
    eli395 Member Posts: 29
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    Thank you.

    and what is "the appropriate treatment plan"?

    🦋

  • eli395
    eli395 Member Posts: 29
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    Thank you Iris.

    🦋

  • M1
    M1 Member Posts: 6,788
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    Eli, sadly this remains an untreatable disease. Most of us go through at least some diagnostic steps to make sure there is nothing else going on. Then it is a matter of individualized steps to live with the present symptoms and prepare for the future-most of the heavy lifting done by the primary caregiver. I personally have not seen benefit from any of the current dementia medications (others here would disagree) but think that many symptoms can be relieved by appropriate use of antianxiety and antipsychotic medications as the disease progresses. So each person's treatment plan will vary. No one here has enough experience with the new anti-amyloid medications (Aduhelm, Leqembi) to render an opinion yet.

  • harshedbuzz
    harshedbuzz Member Posts: 4,470
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    Is this meant to be sarcasm?

    I mean, you've already landed on an excellent support group even if the welcome committee isn't enthusiastic about a protocol about which I have never seen a positive result described in my time here. If you need something specific to this treatment plan, there is likely a FaceBook group out there for it as there is for nearly every complementary or alternative dietary approach to a condition.

    I, personally, am intrigued by the impact of diet on function.

    Keto— specifically— is sometimes used for people with seizure disorders. One issue you might run into is that many caregivers report that their LO's palate changes with the disease. Classically, PWD tend to not only crave sweet foods— cookies and ice cream are currency when attempting to get PWD to comply with hygiene or get unstuck around a distressing topic.



    In the mid-1960s my younger sister had some serious behavioral issues as a young kid. Today, she'd likely be labeled with ADHD and Oppositional Defiant Disorder. Our doctor at the time, who was something of a diagnostic wizard, had mom make notes about behavior and diet for my sister. The doc looked at it and instructed mom to give sis a big glass of Tang (not something we normally had) and see what happened. Sister went ballistic. Doc put sis on a modified version of the Feingold Diet and she was so much better. Yellow #5 was a huge trigger for her. That said, the diet has largely been debunked after being accepted as gospel for decades. Avoiding ultra-processed food is probably still a good idea.

    HB

  • SSHarkey
    SSHarkey Member Posts: 298
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    For them it was getting under a doctor’s care and taking what medication helped slow it down as long as possible. Once they did that, they were able to focus on the time they had left together.

  • M5M
    M5M Member Posts: 117
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    edited April 10

    just a few days ago, in another post there was mention of a pamphlet with description/ overview information about Alz. I followed the link and read several pages of the publication. It came from some “ official” source. I meant to download and print it but got interrupted and didn’t. I can’t find it now, buried in some comments. Can someone lead me back to it? It looked like great overview without too much of the dreadful details ……sort of information for newbies.

  • Quilting brings calm
    Quilting brings calm Member Posts: 2,477
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    edited April 10

    ‘appropriate treatment plan’.

    Translation: a care plan that attempts to keep them safe and cared for the rest of their life as they progess down the path that is dementia.

    There’s no cure, no treatment, although there are medications that may mask or control some symptoms for a time. Symptoms such as memory, anxiety, depression, agitation, insomnia.

    Then there’s the part of the plan that keeps them safe and cared for: caregivers, aids, AL or MC facilities, locks, gates, etc.

    This is an excellent support group - but I think you might be asking about zoom meetings - and I don’t know of any of those. One of the pluses of this group is I can ask my question or vent at my convenience and other people can reply at theirs. 24/7/365. Anonymously. In my pajamas.

  • Heartbroken17
    Heartbroken17 Member Posts: 3
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    We tried the Bredesen protocol when my husband was first diagnosed 6 years ago. It was expensive - all the supplements/vitamins, diet changes, etc. and the only difference it made was he ended up with severe gastrointestinal issues that continue to this day. As most people have stated, it is basically a money grabbing scam. Stick with real medicine. If you want to try experimental treatments, get involved with a clinical trial. My husband did that, and I do think it did help a little bit during the three years he was enrolled. Unfortunately it wasn't successful enough for the drug to be tested further or approved. The only way this disease is going to be cured is for more people to participate in clinical trials.

  • T. Slothrop
    T. Slothrop Member Posts: 37
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    Like others here, we tried the Bredeson protocols when DW was first afflicted. It made sense to us, a pair of highly educated professionals. We went to a practitioner of the protocol, paid for the tests, bought some of her supplements, used them for a while. It was not easy, nor did we notice any improvements. And we ended up feeling as if we had fallen for charlatans, both Bredeson and this doctor. I recommend against it.

    Tyrone

  • eli395
    eli395 Member Posts: 29
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    no, i am not being sarcastic. (that word has an origin: "ripping of flesh")

    I don't always believe what i'm told or what i read. I fired my doctor when he told me that i had Chronic Fatigue Syndrome, with no cause no cure and i had to learn to live with it. It took a little while but i am cured. that was in 2006. Been super ever since. i m an amatuer athlete.

    Then in 2015 i got Clostridium difficle. Knowing nothing about it, my laptop & i started researching. Two drs almost killed me telling mi to take Immodium, which is contraindicative and can cause explosive, usually fatal, Toxic MegaColon. Then different docs prescribed antibodies. I read the drug inserts. Carcinogen & one was banned in the UK. i refused their prescrptions and they yelled at mi, "You're gonna end up in the ER & probably die." I didn't. They do not know everything. I have trust in the healing abilities of the Human body andSpirit, if it has what it needs and gets rid of the toxins.

    Bredesen explains the amyloid hypothesis, the overload of the amyloid protein precursor, and recommends how to lessen it. And he does have a book re: survivors: "The First Survivors of Alzheimer's". We are reading it now. Yes, the protocol is complex and requires much time and work. I am willing to try, with the help of my higher power.

    🌟🙏🏼🌟

  • mommyandme (m&m)
    mommyandme (m&m) Member Posts: 1,468
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    Doesn’t Bredesen have recommendations for an online support group? I’d think all those invested in his treatment plan should have a place to share, compare and vent that’s facilitated by the doctor’s staff.

    This forum is the best, IMO. You can find local support groups in your area and virtual groups through the Alz Assoc at this link:

    https://www.communityresourcefinder.org/

  • eli395
    eli395 Member Posts: 29
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    i haven't looked into a Bredesen ALZ support group cuz i haven't paid the $$ to be part of the club. This support here is great, so far, helpful, blunt & honest. Thank you. I'll see if Bredesen has a free support group.

  • wizmo
    wizmo Member Posts: 98
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    Direct experience here - we tried the Bredesen protocol around 7 years ago when it was relatively new, worked with a local practitioner and traveled to see a neurologist practicing combination of regular and functional medicine as well. Did all the expensive supplements, true keto diet (daily blood checks like diabetic patients do), brain exercises, electrode stimulation, 2-3 month blood tests from lab to check everything was getting “optimized”. I did the diet with DW for support and because it would have been hard for me to manage different meals between us. It was a lot of effort without expected results. They openly say the program fails for 50% of participants and do not know why. I suspect failure is much higher. Bredesen has faced some harsher criticism more recently for less than rigorous science.

    I still have some belief the combination of everything we did helped in some way to slow or delay progression in earliest stages but certainly did not stop or reverse it. Hard to say if we had just done a more relaxed Best Practices and vigorous exercises if it would have come out the same in the end. I don’t regret trying everything we could do at the time but would hesitate to endorse it today.

    Eventually progression accelerated. DW age 59 entered memory care mid stage 6 a month ago, 7 years after diagnosis

  • eli395
    eli395 Member Posts: 29
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    Thank you for your reply, wizmo🌟

    this helps. i appreciate your connecting.

    my gut says that it is possible.

    50% feels better than 0%.

    it could also be vascular dementia. we r new at this.

    Thank you again🌟🙏🏼🌟

    🦋

  • jfkoc
    jfkoc Member Posts: 3,874
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    eli…you are not going to find a more informative, supportive or honest support group than this one.

    I applaud you for your advocacy for your husband as well as for yourself. Go ahead and try the protocol. I do not think it is harmful to anything except your finances.

    Please do report back if there is a support group for the program.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more