Begi aning Bredesen protocol

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RossKrupp
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Begi aning Bredesen protocol

Post by RossKrupp »

Hi, My husband Jim is 74 years old has been diagnosed with early stage dementia and started the Bredesen protocol about 10 days ago. His test results showed Mercury toxicity and digestion issues such as leaky gut. My concern is that on this first 10 days he's feeling worse. Memory is worse and his overall feeling of well being has declines significantly. Is this normal? I've read on another FB group that some times people experience toxic dump symptoms and the solution seems to be to stop the supplements for a few days then restart. He is taking all the supplements recommended in the Recode program although his probiotics have not arrived yet so he's taking digestive enzymes for now. I would appreciate any thoughts or comments others may be able to provide.

I found mention of this site in the Bredesen book and am looking forward to hearing from people who are further along than we are.
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Re: Begi aning Bredesen protocol

Post by NF52 »

RossKrupp wrote:Hi, My husband Jim is 74 years old has been diagnosed with early stage dementia and started the Bredesen protocol about 10 days ago. His test results showed Mercury toxicity and digestion issues such as leaky gut. My concern is that on this first 10 days he's feeling worse. Memory is worse and his overall feeling of well being has declines significantly. Is this normal? I've read on another FB group that some times people experience toxic dump symptoms and the solution seems to be to stop the supplements for a few days then restart. He is taking all the supplements recommended in the Recode program although his probiotics have not arrived yet so he's taking digestive enzymes for now. I would appreciate any thoughts or comments others may be able to provide.

I found mention of this site in the Bredesen book and am looking forward to hearing from people who are further along than we are.
Welcome to our site, RossKrupp,

You and your husband may be feeling overwhelmed with his diagnosis and changes in your daily lives and now with the concerns about his reaction to supplements in the Bredesen protocol. I am not an expert on the Protocol, but as a 67 year old spouse, I know that having the stress of a new diagnosis, with probably what feels like an endless list of questions no one can answer--and not even knowing which are the first things you should do--is something that can feel like being caught in whitewater rapids without a paddle.

So while it might seem counter-intuitive, I would suggest that you give yourself and your husband permission to not start everything at once--to not take ALL the recommended supplements right away. I have several friends around my age who have found that certain supplements on the Protocol interfered with prescribed medications in ways that they hadn't realized, and that others simply seemed to disagree with them at the recommended dosages. We already know that people over the age of 60 often need a lower dose of medication to have the same effect as someone in their 30's or 40's.

Stavia, who is a family physician and also ApoE 4/4, has a helpful section on Supplements here: Supplements, yet they are only # 8 in her list of recommended strategies in her Primer
She also notes that:
I and this community are not touting any particular brand or type of supplement. I and this community carefully consider the evidence for each supplement and we all make our individual decisions. This is not a black and white area, there is uncertainty about the efficacy of many of these supplements, about what dose is optimal, and what blood levels to target
.

Some of our most senior members recommends starting slowly, with one or two areas that are particularly below recommended values and have been linked in studies to improved health and cognition, such as Vitamin B-12 and Vitamin D3.

It's just as important, in my opinion, to talk with your husband (and friends and family) about what is important to him and how to keep those experiences and people in his life. People who feel socially engaged and optimistic tend to do better on most measures. In addition, exercise has been well-studied as helping maintain brain health in mild cognitive impairment and early stage Alzheimer's. Not every 72 year old has a history of going to the gym, but if he will go on walks, join a group at the local gym or community center for strength training and geared to men, or use an exercise bike while watching the news, he might feel and sleep better.

Here is the conclusion of a recent study of aerobic versus strength training exercise in people with early AD:
Aerobic exercise in early AD is associated with benefits in functional ability. Exercise-related gains in cardiorespiratory fitness were associated with improved memory performance and reduced hippocampal atrophy, suggesting cardiorespiratory fitness gains may be important in driving brain benefits.
Aerobic exercise for Alzheimer's disease: A randomized controlled pilot trial

Dr. Stavia and the wonderful health coaches who intern on our site like to say that it's important to listen to our bodies, and to remember that we have a great deal of learned wisdom with what works for us as unique individuals. So give yourself and your husband a chance to take a deep breath, remind yourselves that you have no doubt faced many uncertain times in your lives, and that you don't have to do everything right away, but can take small steps and monitor how well they help.

Hugs from a spouse who admires your grit and love in the face of this challenge.
4/4 and still an optimist!
RossKrupp
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Re: Begi aning Bredesen protocol

Post by RossKrupp »

Thanks so much for your informative reply! it's such a help to have a resource like this for ongoing discussions. My husband Jim is quite slim and has very little body fat. He's also quite active including aerobic exercise on a stationary bike (has not been doing this for the past couple weeks due to feeling so crappy), 2 sessions/week at the gym with a personal trainer and Tai Chi 1/week - both of these he has continued during the past couple weeks.

His test results showed some candida, Mercury toxicity, and high level of CRP at 4.24 and as you know, should be 1. His Dr wants him to take probiotics as he had no lactobacillus in his stool test (haven't received them yet so that will start next week when the supplement arrives). We have just started digestive enzymes in the last couple days. His stool test showed high fat content so he's not digesting fats and he'll be taking a calcium glucurone supplement to help stabilize the beta glucurone - also a supplement that has not yet arrived.

I'll advise him to maintain the program for now, add epsom salt baths, and make sure he's drinking enough water and see what happens in the next couple weeks.
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Re: Begi aning Bredesen protocol

Post by Davida »

RossKrupp wrote:Hi, My husband Jim is 74 years old has been diagnosed with early stage dementia and started the Bredesen protocol about 10 days ago. His test results showed Mercury toxicity and digestion issues such as leaky gut. My concern is that on this first 10 days he's feeling worse. Memory is worse and his overall feeling of well being has declines significantly. Is this normal? I've read on another FB group that some times people experience toxic dump symptoms and the solution seems to be to stop the supplements for a few days then restart. He is taking all the supplements recommended in the Recode program although his probiotics have not arrived yet so he's taking digestive enzymes for now. I would appreciate any thoughts or comments others may be able to provide.

I found mention of this site in the Bredesen book and am looking forward to hearing from people who are further along than we are.

Good day RossKrupp and welcome to the Apoe4 community. I am so glad that you found this site and had the fortitude to comment and ask questions. I commend you for being so proactive and supporting your husband in such a positive way. I'm sorry to hear of his recent turn of events. To understand the complexity and biochemistry underlying cognitive decline not to mention each individuals constitution is challenging to say the least.

As NF52 said, it can be very overwhelming at first and confusing knowing what to do next. She gave some very sound recommendations and I'm sure others will chime in as well. Taking a look at our Primer, written by a physician member has a wealth of information you may find useful. Also, Our Stories is a thread where you can read more of other's journey and perhaps continue to post more of your own.

We learn so much from each other as I'm sure you have during your caregiving. Spouses have proven to be remarkably helpful! That being said, don't forget yourself along the way. Having been a caregiver myself I eventually learned the importance of maintaining my own well being and that included allowing others to give help and support as well.

Thanks again for your contribution and we look forward to hearing more from you.

My best, Davida
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Reversing Cognitive Decline for Coaches Certification 2018
mike
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Re: Begi aning Bredesen protocol

Post by mike »

Is your husband doing a detox currently? If so, that will make him feel lousy until they are out of his system. If so, I would back off on any other changes until this has run its course.
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Re: Begi aning Bredesen protocol

Post by retiredguy »

Hi RossKrupp
I'm very interested to hear how things unfold for you and your husband. I am also new to this sight. My wife is 72 years old and has been diagnosed with Mild Cognitive Impairment (MCI). We are probably a couple of months behind where you and your husband are. I approached Dr. Bredesen's book with a great deal of skepticism but nonetheless have decided to go ahead with the protocol. The Bredesen book contains many anecdotes about success stories. No treatment is 100% and I did not see much time devoted to failures. Naturally, the more advanced the disease the less likely the treatment will work. I am glad to hear that your husband is active for his age and exercising. That unfortunately is not the same for my wife.

I am very interested in hearing how things progress for your husband. You can communicate with me either publicly or privately.
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Re: Begi aning Bredesen protocol

Post by NF52 »

RossKrupp wrote:
retiredguy wrote:Hi RossKrupp
I'm very interested to hear how things unfold for you and your husband. I am also new to this sight. My wife is 72 years old and has been diagnosed with Mild Cognitive Impairment (MCI). We are probably a couple of months behind where you and your husband are. I approached Dr. Bredesen's book with a great deal of skepticism but nonetheless have decided to go ahead with the protocol. The Bredesen book contains many anecdotes about success stories. No treatment is 100% and I did not see much time devoted to failures. Naturally, the more advanced the disease the less likely the treatment will work. I am glad to hear that your husband is active for his age and exercising. That unfortunately is not the same for my wife.

I am very interested in hearing how things progress for your husband. You can communicate with me either publicly or privately.
HI retiredguy,
I've added a "quote" to your post, so that RossKrupp will be notified by email of your post. You can also "subscribe" to a forum conversation to be notified of any new posts on that specific "thread". I hope you two find that you have much in common and can support each other, either on the forum or, if you both choose, through Private Messages. Here's a link to the handy guide (complete with screen shots) of how to use quotes, how to subscribe and how to send Private Messages (PMs):"How-To" Get the most out of the ApoE4.info website
4/4 and still an optimist!
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Re: Begi aning Bredesen protocol

Post by RossKrupp »

"Dear Mike,

we're starting detox next week. However, he has started digestive enzymes and some probiotics so they may be providing a detox function of sorts. next week we'll get into more substantive detox."
RossKrupp
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Re: Begi aning Bredesen protocol

Post by RossKrupp »

NF52 wrote:
RossKrupp wrote:
retiredguy wrote:Hi RossKrupp
I'm very interested to hear how things unfold for you and your husband. I am also new to this sight. My wife is 72 years old and has been diagnosed with Mild Cognitive Impairment (MCI). We are probably a couple of months behind where you and your husband are. I approached Dr. Bredesen's book with a great deal of skepticism but nonetheless have decided to go ahead with the protocol. The Bredesen book contains many anecdotes about success stories. No treatment is 100% and I did not see much time devoted to failures. Naturally, the more advanced the disease the less likely the treatment will work. I am glad to hear that your husband is active for his age and exercising. That unfortunately is not the same for my wife.

I am very interested in hearing how things progress for your husband. You can communicate with me either publicly or privately.
HI retiredguy,
I've added a "quote" to your post, so that RossKrupp will be notified by email of your post. You can also "subscribe" to a forum conversation to be notified of any new posts on that specific "thread". I hope you two find that you have much in common and can support each other, either on the forum or, if you both choose, through Private Messages. Here's a link to the handy guide (complete with screen shots) of how to use quotes, how to subscribe and how to send Private Messages (PMs):"How-To" Get the most out of the ApoE4.info website
Dear Retiredguy,

I wrote quite a long reply to you this morning but apparently didn't understand how to properly get something posted so I don't think it went through. I wanted to give you a bit of history on my husband Jim's symptoms and how we got where we are but really it probably doesn't matter much. Suffice it to say we though he'd had several TIA's and now the conclusion from his neurologist is that it's dementia, not stroke at all. A functional medicine person introduced us to Bredesen and since there aren't any other options, how could we not pursue it? Jim is complaining about how many pills he has to take with all the supplements but he's getting it done. The more challenging thing for me is that I'm used to him being very task oriented, a get it done person, and he's lost that vitality and general interest in day to day things to do. We read the book by Francis McNear mentioned on this site, "Defeating Dementia" and the author talks about that same sense of lethargy and procrastination and just says that under the Bredesen protocol it went away but there's no discussion of how long that took, was it gradual, or what. In general we found the book to be disappointing in that it's really focused on a person admitting there's a problem, all the various symptoms that a person may avoid or deny, and how it affected the author's life. Then he finds Bredesen and the story ends there. I would like to have known a lot more about his experiences starting and how the improvement unfolds on the Bredesen program.

Jim is not APOe4, he's 3/3 on the gene type. He may not ever actually get Alzheimers. My question is how effective is the Bredesen protocol for just dementia, without Alzheimers?

Also Jim's blood, stool, and urine testing showed problems with his digestions, specifically he's not digesting fats well, is low in B vitamins, and has zero lactobacillus in his stool. Also he is high in Mercury. He's added the B vitamin supplements, digestive enzymes, and probiotics to his list of pills. He has one remaining Mercury amalgam and we've scheduled that to be removed by a holistic dentist. Next week he's start a detox program which is supposed to include either saunas or epsom salt baths every day for 20 mins. I'm not sure that is going to be well received as it's 90 degrees here in MI.

Speaking of heat, actually another thing I've noticed is that his metabolism has changed quite a bit in the last couple years. He always "ran hot" so to speak and had high body heat. Now he is cold more often and sleeps in flannel robe. I'm curious to see if that's going to change as his digestion improves.

I hope this helps,

Stephanie
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Re: Begi aning Bredesen protocol

Post by NF52 »

RossKrupp wrote: ...I wanted to give you a bit of history on my husband Jim's symptoms and how we got where we are but really it probably doesn't matter much. Suffice it to say we though he'd had several TIA's and now the conclusion from his neurologist is that it's dementia, not stroke at all. A functional medicine person introduced us to Bredesen and since there aren't any other options, how could we not pursue it? Jim is complaining about how many pills he has to take with all the supplements but he's getting it done. The more challenging thing for me is that I'm used to him being very task oriented, a get it done person, and he's lost that vitality and general interest in day to day things to do....
Jim is not APOe4, he's 3/3 on the gene type...Speaking of heat, actually another thing I've noticed is that his metabolism has changed quite a bit in the last couple years. He always "ran hot" so to speak and had high body heat. Now he is cold more often and sleeps in flannel robe. I'm curious to see if that's going to change as his digestion improves.

I hope this helps,

Stephanie
Thanks for sharing so much of yours and Jim's story, Stephanie. I think it's easy to look track of how all the subtle and seemingly (to outsiders) minor changes in loved ones may cause a seismic shift in relationships, especially ones like long-term marriages where we have a sense of "how things are". I spent several years working with kids and their families affected by traumatic brain injury (TBI) and it helped me to learn about "family systems theory": the idea that you don't have a child with a brain injury; you have a family with a brain injury. Established roles can often dramatically change almost overnight; the lack of a clear path forward, or even the ability for professionals to predict the next 6 months to a year, is beyond frustrating to families. So terms like "feeling you're on a rollercoaster" or "feeling that you're mourning a loss of the old Jim when Jim is still healthy and here" are very real and important to validate.

I suspect that Jim's change of personality from being "very task oriented, a get it done person" to not having vitality and a general interest in day to day things may be due to both a psychological impact of his own realization of the changes he's experiencing, the new regimen and the diagnosis and, maybe more importantly, to the specific profile of his neurological damage. I don't know whether the neurologist was able to do an MRI (or if Jim would even be able to tolerate the noise and staying still) but cognitive testing, and interviews with you may show that he has "executive function" deficits from localized changes in his frontal lobes, a common area for early impact. Our frontal lobes are in charge of most of the areas we think of as "us": our time management, our goal-setting, our ability to organize our things, our schedules, our planning for the future, our ability to choose one restaurant over another, or one activity over another. Some people with frontal lobe injury from TBI have shown benefit when given neuro-stimulants such as Neurontin. I believe that some of the drugs approved for early-stage dementia are also targeted to improving neural connections in the frontal lobe, but would at least think it's a question to bring up to the neurologist.

Since two different problems can happen in one person, I also wonder if Jim's sensitivity to cold might be a sign of low thyroid, which becomes more common in people over the age of 60. A blood test would be an easy way to find out; if Jim has hypothyroidism, it is easily treated with medication.

For yourself, I would think about workarounds: can some of those pills be combined in a protein smoothie he would enjoy? Are there ways to pair pill-taking with a preferred activity so he has something to look forward to afterwards? If he was the "Task Rabbit" guy around the house and yard, this is a perfect time to think about out-sourcing those things to someone else, or deciding that they don't have to be done as often. Millennials have figured this out way before our generation, which is why two of my three kids have a cleaning lady while I still feel a tiny bit guilty about not maintaining the German standards of my mother's generation. If Jim handled writing checks, you can simplify bill-paying by putting most accounts into automatic deposit and withdrawal. He can still feel needed by checking statements online, if he enjoys that. It's also a good time to have Jim sign a durable power of attorney for you and maybe a back-up person, a health care proxy, and an advanced care directive (most states have downloadable forms which can be done online and then printed out and given to your local hospital for entry into a universal registry system for all providers to see, with approved access. All of those are things that our generation is learning to do years before we may need them, often because of difficult experiences with our parents' generation.

And a final thought: reach out to those people who ask what they can do and give them a task that helps Jim and you, like taking him to a ball game while you have a break, playing cards or watching a movie while you get a mani-pedi to relax, etc. It's not selfish to take care of yourself--it's what airlines recommend: First, put on your own mask.
4/4 and still an optimist!
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