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Thoughts on RECODE

Posted: Fri Feb 02, 2018 12:53 pm
by antimatter37
I am new to this forum, and recently finished reading the book "The End of Alzheimers....". I find this work very interesting, and applaud the researchers for their new, multi-component approach to the prevention and treatment of Alzheimer's. Personally, I am a 62 year old male with a 4/4 APOE. I have no apparent cognitive decline up to this point (knock on wood!). I do have some thoughts on this research and the RECODE protocol, however, and wonder if anyone else in this group may also want weigh in.

What caught my attention more than anything else in the book was the fact that persons who were benefiting from RECODE and subsequently interrupted the protocol, even briefly, very abruptly began a regression to their previously impaired state. I find this worrisome with regard to the overall cellular models for improvement that the author proposes (I note that this issue is briefly addressed later in the book). It seems implausible to me that if the neuronal death/life cycle is being reversed by RECODE, including the reduction of AB and the formation of "new connections" within the brain, such a rapid regression back to cognitive impairment when the protocol is interrupted simply should not happen so quickly. Even if the protocol interruption does indeed result in a subsequent return to the formation of the negative neuronal death cycle, why should this occur so quickly?

If the cognitive regression after RECODE interruption is due to a sudden increase in AB, shouldn't this be easily detected by retinal/PET scans? Has anyone actually tested this?

Is it possible that RECODE does not actually result in the formation of new neuron growth or connections, but instead simply slows/halts the disease progression and possibly helps enhance the functioning of existing neurons without actually expanding their population or functionality? This may help explain why regression upon protocol interruption occurs so rapidly.

Some published research indicates that APOE 4/4 results in slower, possibly much slower, nerve and nerve related growth throughout the body. Might it be that very long, multi-year (or decade), RECODE protocols are needed to truly see permanent, positive changes in neuron growth or connectivity?

Overall, the research in the book seems logical and sensible to me even though some questions remain. I will be one of those persons slowly working my way into the protocol over the next few months. The RECODE protocol seems to have an increasingly impressive catalog of anecdotal evidence supporting it. If RECODE can survive an actual double blind clinical trial, it may ultimately become the basis, or starting point for research into means for further improvement, including permanently halting or reversing the disease. I look forward to the upcoming clinical trails.

Re: Thoughts on RECODE

Posted: Fri Feb 02, 2018 1:26 pm
by rianlees
Hi antimatter,
Welcome to the ApoE4 community. I really enjoyed your post. it sounds like you have begun researching into the potential influencers of cognitive health and might I say, overall health as well. Have you seen the primer on this site,you may find a number of crossovers with the Recode information?

You asked some great questions in your post, and that is one of the reasons for the existence of this site. It is a place to ask questions, gather information, tap in to support amongst other things. At this point there are still many questions which we haven't all the answers to though hopefully the upcoming trials will answer some. In my personal opinion, we may never have all the answers (does that ever happen in life) and good solid guidelines may be enough...often an answer gained leads to more questions ;)

I wish you well in integrating the recode modifications into your lifestyle and all the best in your wellness journey and once again, welcome to the community.

Re: Thoughts on RECODE

Posted: Fri Feb 02, 2018 6:18 pm
by NF52
antimatter37 wrote:Is it possible that RECODE does not actually result in the formation of new neuron growth or connections, but instead simply slows/halts the disease progression and possibly helps enhance the functioning of existing neurons without actually expanding their population or functionality? This may help explain why regression upon protocol interruption occurs so rapidly.

Hi Antimatter,
Your question is fascinating, since I too have noticed peer-reviewed studies that show that some ApoE4 individuals have a longer pre-clinical periods in spite of a higher amyloid "burden", and then a steeper decline. Among the theories I've seen (but can't put my finger now on citation) is the hypothesis that the protective factor of higher cognitive skills, for which "higher education level" is used as a surrogate on some studies, masks the slowly increasing effects on the pre-clinical phase. That could result in higher levels of reported "subjective memory complaints" (SCD) or "subjective cognitive disorder" (SCD) even before results on neuropsychological tests confirm the diagnosis. Those may be people who would be likely to seek out the Bredesen protocol, and show benefit from it. If they pause for any reason, including more difficulty with frontal lobe goal-setting, planning, self-monitoring, then the resultant changes may simply be the progression, not "regression". That's just a hypothesis, and I think Dr. Bredesen's protocol offers great hope and specific advice important for almost everyone. Here's one source that suggests also that maybe some people are in early stage MCI and so show positive benefits; others, who have more memory-related (amnestic) impairments, quickly progress to diagnosed AD. Not the fault of the protocol, or a brief break from it, possibly, but just a clinical picture of a different stage of the disease.

...longitudinal studies involving AD have reported that higher education is associated with more rapid cognitive decline. We aimed to evaluate whether highly educated amnestic mild cognitive impairment (aMCI) participants show more rapid cognitive decline than those with lower levels of education. ..
Late-stage aMCI participants with higher education showed faster cognitive decline in language, memory, and Clinical Dementia Rating Sum of Boxes (CDR-SOB) scores. On the contrary, early-stage aMCI participants with higher education showed slower cognitive decline in MMSE and CDR-SOB scores.
Conclusions: Our findings suggest that the protective effects of education against cognitive decline remain in early-stage aMCI and disappear in late-stage aMCI.

Effects of education on the progression of early- versus late-stage mild cognitive impairment

Re: Thoughts on RECODE

Posted: Sat Feb 03, 2018 7:47 am
by Jan
Hi, antimatter37, here's a link to the Primer rianlees referred to. It was written by physician member Stavia and contains a wide range of information that might be helpful to you. Like rianlees and NF52, I was intrigued by your question. Thanks to NF52 for an on-point article. We're delighted you found our site, and look forward to your observations as you explore further implementing the ReCODE protocol.

Re: Thoughts on RECODE

Posted: Sat Feb 10, 2018 11:35 am
by Fiver
Hi antimatter. Good questions. I imagine it as having a system that is sensitive, and tips the wrong way quickly. I enjoy learning the details of the biochemistry. But I also take comfort in the fact that must of the protocol is basic stuff that would benefit anyone - don't hit your head, eat less sugar and more veggies, exercise, etc. I know that's a simplification but I feel better following the program, plus I know it probably lowers my risk of many other health issues.

I too look forward to the larger clinical studies, even though I'm already pretty convinced from current studies that we are on the right track.

About the speed at which people can decline when they stop the program I'm not sure of the exact timecourse but it doesn't surprise me. Some recent work shows that neurons don't die so much as shrink and disconnect. That could happen pretty fast if the conditions are bad.

So much more to learn....

Re: Thoughts on RECODE

Posted: Sat Feb 10, 2018 11:46 am
by Stavia
Antimatter, this is an excellent question.
If I cheat too much or fall off the wagon completely, I do get ongoing daily brain fog and feel awfully tired. It takes about 2 to 3 to 4 weeks to reverse completely. Time dependent on how long the fog has been there. Obviously this is not AD as it comes and goes too quickly. But is it a sign of a process/processes that may eventually become irreversible if prolonged for an unknown time?
In other words is this reversible effect contributory to the irreversible effects?

We have more questions than answers huh

Sent from my SM-G930F using Tapatalk

Re: Thoughts on RECODE

Posted: Mon Feb 12, 2018 11:25 am
by antimatter37
Thanks everybody for the very thoughtful responses. Scientific evidence regarding the effects of chronic inflammation on many different diseases, especially those that also have a correlation to age, now almost overwhelmingly points to this highly complex
system response as a significant contributor to these various diseases. What combination of diet, exercise, supplements and medications will be the ultimate solution to controlling inflammation in APOE4 carriers without simultaneously destroying the beneficial and needed immune system itself? As pointed out, the RECODE program is undoubtedly a very healthy lifestyle with no easily identifiable downside. Maybe it will indeed turn out to be that holy grail of inflammatory system sweet spot targeting for the APOE4 community and others.

Also, as pointed out, interrupting the RECODE protocol might simply put the individual back into the inflammation cycle, with all of its associated side effects for that particular person. If that person is, for example, pre-LOAD, this could result in reentering the slow decline into AD owing to inflammatory and other effects with the additional immediate inflammatory symptoms of fatigue or brain fog particular to that person. What would still concern me, though, is if interrupting RECODE also somehow results in a rapid resurgence of AB within the brain.

Thanks again for he responses!

Re: Thoughts on RECODE

Posted: Mon Feb 12, 2018 11:53 am
by Jan
antimatter37 wrote:... I will be one of those persons slowly working my way into the protocol over the next few months. ...

I gather you are phasing things in slowly, antimatter. Are you implementing the program 'area' by 'area'? For instance, starting with nutrition, getting that in order, then focusing on perhaps exercise? Or, a little of each area, and a little more each month? Are you giving yourself a particular ending point, at which time you expect to have the entire program on board? Just curious, if you'd like to share.

Re: Thoughts on RECODE

Posted: Tue Feb 13, 2018 1:51 pm
by antimatter37
I would be happy to share what I am doing to enter as much of the RECODE protocol as I can do for now. I will divide into individual sections and try to explain in some cases why I am doing these particular things.

1. Exercise. I have been exercising, primarily jogging, for 4 decades. To this day, I am amazed at the clarity of thought and focus I experience while running, and the overall reduction of stressful mind activity that also occurs. I have never been a good runner, more of a “plodder”. I jog three days per week (9-12 miles total) and walk/hike 30 minutes one additional day if possible. I do not do any strength training. For RECODE, I am not altering this exercise in any way yet.

2. Sleep. I usually sleep reasonably well. My wife indicates that when I was heavier by about 20-30 lbs., she noticed much more snoring and occasional interruptions that may be related to sleep apnea. Losing weight put an end to most of that. There seems to be a direct correlation between my weight and any snoring or apnea episodes. Just another reason to try and keep overall weight under control. For RECODE, I have added 3 mg of melatonin 10 minutes or so before heading to bed.

3. Supplements. Since I am APOE 4/4, I concentrated mostly on the inflammation related supplements identified in the book. To these I have added some mitochondria and metabolism related supplements along with vitamins B complex, C, D3, and E. Added fish oil. Finally, 100 mg resveratrol and “Niagen (nicotinamide riboside)”. The total is about 20 supplements. These may change depending on future data.

I will be visiting my primary care physician shortly, and I will try to convince her to add some additional blood tests to the standard group that she usually uses. The additional tests will include CRP, T3, T4, and LDL particle statistics. My normal total cholesterol with 10 mg atorvastatin is 140 – 150 with a good ratio of LDL/HDL. Without the statin, my total cholesterol is about 160-180, with a good ratio as well. Needless to say, my doc likes to prescribe statins. For RECODE, I will probably stop the statin dose. I also have a normal TSH, but somewhat higher than what the book recommends. Hence the T4 and T4 tests. My blood sugar levels always have tested good. My blood pressure is pre-hypertensive, so I also take a small dose of Losartan.

4. Diet. The diet portion of RECODE is a nightmare for me. I have been a lifelong carnivore, love all grains and hate vegetables. I pass cardio stress tests (2 of them) with flying colors, and have no symptoms of any heart disease. What to do?

I have begun intermittent fasting, eating only within an 8-hour window each day. Pretty easy to do for me.

I have eliminated most sugar intake, with occasional exceptions. Again, this has been relatively easy for me, as I have a history of low-carb dieting which required the same thing.

I am in the process of switching to gluten free whole grains. I do not have Celiac disease but let’s see what the 100% whole grain plus gluten free does for me. Experiment in progress.

I have Cut back on dairy 80%.

In a desperate attempt to add vegetables to my diet, I am using a “veggie powder” that contains spinach, kale, broccoli, and beets. It also contains some blueberry powder for taste. I do this once per day. I realize this is not what folks say I should be doing to get my daily servings of vegetables. My particular formula does not contain any wheat grass, only what I have listed.

I am slowly reducing meat intake, especially beef. Keeping eggs (about 6 per week) for now.

Overall, the diet portion of recode will be very difficult for me to fully implement right away. My hope is that the huge reductions in sugar and processed carbs will have major benefits (how could they not?).

When I look at the full RECODE diet, it seems extraordinarily healthy in just about every way. People who follow this diet and the rest of the RECODE protocol will invariably liver longer, healthier lives. How could anyone argue against better diet, exercise, sleep and healthy supplementation? For those of us who are APOE 4/X or 4/4 isn’t “life extension through healthy living” what we are really trying to achieve? Carrying APOE4 alleles does not mean we will develop LOAD while others won’t, it means that we have a higher probability of developing EARLIER what everybody else will also eventually develop if they live long enough. RECODE may or may not be a true “cure” for LOAD, only a real, large scale clinical trial can scientifically prove this. If RECODE only delays the onset of symptoms, maybe significantly, until we pass away from something else, that is good. If it can improve some brain functionality in those who may already have some symptom of LOAD, that is even better.

Re: Thoughts on RECODE

Posted: Tue Feb 13, 2018 2:35 pm
by Jan
Really thoughtful, well-honed plans, antimatter. Thank you for posting. It's helpful to see how others are prioritizing things, and often it's just the inspiration that someone at an impasse needs to move forward.