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Reversing Alzheimer's: What Could it Mean for Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia?

Discussion in 'General' started by Cort, Aug 1, 2016.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Alzheimer's is the elephant in the room facing the medical systems of United States and other developed countries. Alzheimer's is a devastating disease to have, to watch and ultimately to die from. Already the third to sixth leading cause of death in the U.S. (depending on who you ask), it's expected that millions more people now living will eventually be diagnosed with Alzheimer's.

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    It's also incredibly expensive. Treating Alzheimer's and other forms of dementia are believed to cost the U.S. economy over $200 billion a year. Several drugs may be able to slow the progression of the disease but the benefits are usually small,and none have been able to reverse it.

    Alzheimer's is a disease affecting the hippocampus and other areas of the brain that ultimately results in death as patients lose control of their bodily functions. The cognitive problems in chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) are much milder but some are similar to those found in early Alzheimer's. They include getting lost, losing things, forgetting dates and appointments, difficulty finding the words to express oneself, slowed information processing, difficulty multitasking and difficulty planning. All three diseases are believed to have an neuro-inflammatory component.

    Recently an unusual study attempted to treat Alzheimer's in a new way. The authors - most of whom work at UCLA - believe that Alzheimer's results from an environment in the brain which promotes synaptic death and nervous system reorganization. Their goal was to create an environment in the brain conducive to synaptic growth.

    This study included ten patients with "mild" Alzheimer's. Mild in Alzheimer's, it turns out, is mild only in reference to severe Alzheimer's. The cognitive problems faced by the people in this study made it difficult for many to continue working. Problems recognizing faces, adding numbers, getting lost close to home, etc., etc. were common. One person had begun shutting down his business; was considering committing suicide. Another had lost the ability to speak in different languages. Others had lost jobs. One couldn't play guitar anymore. The long term prognosis for each was bleak.

    MEND

    The UCLA doctors put them on a personalized treatment protocol called metabolic enhancement for neurodegeneration (MEND). The protocol contained some drugs but relied heavily on alternative health modalities, including supplements, diet, exercise, brain stimulation, stress reduction and sleep practices.

    Supplements.jpg
    Doctors typically treat patients based on whether their test results indicate a pathological situation is present. This group, however, tried to optimize their patients results even when they fell into the normal range. They also attempted to treat systems not parts of systems; i.e. they endeavored to enhance the workings of entire central nervous system network implicated in Alzheimer's in an attempt to return to homeostasis.

    A look at this large protocol will find alternative treatments that many in the ME/CFS and FM community are familiar with; ketogenic, low grain and low inflammation diets, melatonin, testosterone, tryptophan, L- carnitine, curcumin, CoQ10, Ashwagandha, antioxidants, probiotics, resveratrol were just some of the possible supplements suggested. Some drugs ( T3, progesterone, pregnenolone), stress reduction (meditation, yoga) and sleep practices rounded the protocol.

    Tests for insulin resistance, sleep apnea, homocysteine, serum B-12, CRP, heavy metals, cortisol, estradiol, progesterone, thyroid and others were done.

    Results

    It was pretty audacious to propose that a program focused mostly on supplements, a few drugs, diet, exercise, sleep and stress reduction could achieve remission in a disease like Alzheimer's. Alzheimer's, after all, gets almost $1 billion a year in NIH funding and is considered a death sentence. Could a protocol that uses mostly alternative health treatments be the best answer right now for it?

    The study size was small the authors think so. They called the magnitude of the improvements they saw "unprecedented", and asserted that their results "have far-reaching implications for the treatment of Alzheimer's disease, MCI, and SCI" (i.e. dementia)" and for the development of "personalized programs that may enhance pharmaceutical efficacy"

    All of the participants in the trial met the criteria for Alzheimer's before the trial. None of them met the criteria for it or dementia afterwards. Neuropsychological testing indicated that all had normal cognitive functioning results afterwards.

    Individual Results

    Some of the improvements were astonishing. One man's his CVLT-IIB (cognitive test) score increased from 3rd percentile to 84th percentile (3 standard deviations), another from the first 1st percentile to 50th percentile, another from the 13th percentile to 79th percentile, and another from 24th percentile to 74th percentile. This person went from considerably below average to considerably above average in many of his cognitive tests.

    Another person who had been an excellent student bumped up her test results from the 35th percentile to the 98th percentile.

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    A professional writer and editor with a master's degree in English, often misplaced or used the wrong words, and had problems with spelling. Her overall cognitive assessment (neurocognitive index) increased from the 16th percentile to 73rd percentile; her composite memory from the 1st percentile to 61st percentile; her verbal memory from the 3rd percentile to 93rd percentile; her executive function from the 14th percentile to 58th percentile; and her processing speed from 37th percentile to 81st percentile.

    A 49 year old who had lost the ability to speak in two languages was able to do that again. The guitarist was able to play his guitar again. Some patients had more modest gains but the fact that all posted gains in cognitive functioning was, according to the study, highly unusual for Alzheimer's.

    Except for one patient who went off the protocol and subsequently declined, the patients in this study - some of whom have been followed for four years - have maintained their progress. (When the one patient went back on the protocol he improved again.)

    Multi-varied Approach Necessary (?)

    This small study suggests that the standard approach to clinical trials - provide a drug and determine if there's a response - may be insufficient for many chronic diseases. Because by their nature most chronic diseases are complex entities that affect several systems it makes sense that a diverse protocol might be the most effective. Unless a core pathway is discovered a multi-varied approach is probably best. This study suggests that many clinical trials may fail not because the treatment in question doesn't work but because it hasn't been tested with other treatments.

    The cancer community figured this out long ago. Six factors that are present in every cancer have been identified. Because hitting one factor isn't always enough, a variety of drugs that target several often used.

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    The authors used an analogy similar to the leaky boat analogy often used in ME/CFS and FM:

    The patients didn't need to do the dozens of interventions possible; in fact, none of the patients did all the recommended treatments - they just needed to do enough of them to have an effect - to reach what these researchers believe is a threshold for change. That sounds very similar to Dr. Myhill's statement (paraphrased) that her job is getting her ME/CFS patients to 51%; after that the body does the rest.

    Diabetes of the Brain?

    Some researchers believe Alzheimer's is primarily a metabolic disease and call it "diabetes 3" or "diabetes of the brain". That idea rests on the finding of impaired glucose uptake in the hippocampus. It turns out that the same factor in the brain that clears out amyloid deposits in the brain also clears out insulin. That factors preference for insulin over amyloid proteins means that people with high insulin levels may have trouble clearing out amyloid deposits.

    In "A Nutritional Approach to Healing and Preventing Alzheimer's and Metabolic Syndrome" Amy Berger, MS NTP proposes that Alzheimer's Disease (AD) is the result of high insulin levels, insulin resistance and difficulties metabolizing glucose - not in the body as with Type II diabetes, but in the brain. She believes that the brain cells in Alzheimer's are essentially starving in the midst of plenty because they've lost the ability to produce energy efficiently from glucose.

    Berger proposes that a low carbohydrate, low glycemic diet (a Paleolithic-like diet) will shift the basis from energy production in the brain from glucose - which is being poorly metabolized - to by-products of fat metabolism called ketones. Several studies suggest these diets may be helpful in Alzheimer's.

    ME/CFS and FM: Diabetes-Like Illnesses?

    Ron Davis has resisted the pull to have the neurological institute NINDS take over ME/CFS because he believes it's too early to know what ME/CFS is. His preliminary metabolomics results suggest ME/CFS may be a metabolic disorder that better belongs in the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

    Some time ago, Marco noted some of the similarities between ME/CFS and FM and diabetes in a blog. First there's the energy problem:

    Anecdotally we do seem to have problems with blood sugar regulation and share some early symptoms of diabetes (dry eyes and mouth, frequent urination). Plus the physical and mental fatigue and exercise problems in ME/CFS and FM suggest some (unidentified) problem with energy metabolism. One theory suggests that an altered metabolic stress response in ME/CFS patients results in the ‘selfish brain’ starving the peripheral organs and muscles of glucose.

    Marco pointed out that fatigue, exercise intolerance, early muscle pain and difficulty recovering from exercise are all found in Type II diabetes. Autonomic nervous system dysfunction is also present in the form of low heart rate variability and slowed heart rate recovery after exercise.

    Small fiber neuropathy - found in about 40% of FM patients - is common in diabetes. Leptin resistance - a real possibility in ME/CFS given the normal leptin levels found thus far - is also common. The cognitive problems - slowed mental speed and processing - found in diabetes are similar as well.
    Unfortunately insulin and cerebral glucose intake are not well studied in either ME/CFS or FM but a trend towards metabolic problems may be present. A finding of increased insulin resistance in FM patients with memory issues, and FM patients overall in another has been found. Another study found significantly higher insulin levels in ME/CFS patients.

    A couple of studies suggest that the risk for metabolic syndrome may be increased in either fibromyalgia or chronic fatigue syndrome (ME/CFS). In metabolic syndrome carbohydrate intake results in high levels of glucose or insulin, elevated triglycerides, LDL and reduced HDL.

    Brain glucose uptake studies have had mixed results in ME/CFS and FM. Reduced glucose uptake in different brain regions in different people were found in a significant number of ME/CFS patients in one study but another very small study found little evidence of it. Cerebral glucose uptake was also normal in a small FM study.

    Conclusions

    This was a very small study (10 people) but the objective evidence and the findings - that all the participants improved - was startling in a disease like Alzheimer's. The study, which is being expanded, suggested that a multidimensional approach that relies mostly on alternative treatments may be successful even in horrific diseases like Alzheimer's if they are caught early enough. The fact that the improvement has lasted up to four years is encouraging as well. The study also suggested that treatments need each other to work properly, and that more treatment protocols should be tested in clinical trials.

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    Dr. Teitelbaum's chronic fatigue syndrome (ME/CFS) study of some years took a similar approach. Teitelbaum's use of personalized treatment protocols made it impossible to provide a set protocol but the study did move the needle on ME/CFS for many.

    ME/CFS and FM, of course, provide some unique difficulties that Alzheimer's patients do not. We don't know the locus for either, both are probably filled with subsets, and because so much less is known about each, much more guesswork is needed.

    Cognitive problems are common, and inflammation is believed to be a key factor, and metabolic problems may be present as well in all three diseases. Many of the recommendations make sense for people with ME/CFS and FM. The UCLA researchers attempt to improve brain health in Alzheimer's might very well have resonance for ME/CFS and FM.
    Resources
     
    Last edited: Oct 3, 2017
    Rachel Riggs, Veet, Tony L and 4 others like this.
  2. Issie

    Issie Well-Known Member

    Having my mom and dad both die with a form of dementia - this is a subject I'm interested in. I just finished listening to a week long seminar on the subject. You pretty much summed it up with this blog. The main thing from the speakers (there were 32), is no dairy, gluten, refined sugar. Lower carbs and a whole food, as organic as possible, ketogenic diet. This doesn't mean alot of meat. It means alot of the good kinds of fats - avocado, nuts, seeds, coconut oil - etc. In fact they kept saying you can be a vegan and obtain the desired results - without meat. The other biggie was heavy metal detox and parasite or protozoa detox. There is a strong connection with Lyme and Alzheimmers. Exercise of at least 30 minutes was stressed. And drinking enough and staying hydrated.

    Now to put it all into action. My next step is heavy metal detox.

    Issie
     
    Last edited: Aug 1, 2016
  3. Wow! But where can we begin? Paleo diet? Which supplements? Eating more blueberties? I know, Cort, that you don't have the answer, but what are some things that have seemed to help others?
     
  4. Thanks, Issie, I didn't see your post.
     
  5. Dianne Riley

    Dianne Riley Member

    What is a ketogenic diet?
     
  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    It's interesting given that ME/CFS, in particular, is often triggered by an infection that the idea that Alzheimer's Disease is caused by an infection has really caught hold. Check out this thread here
    Also we know that medical marijuana can be very helpful for FM in particular and cannabanoids may be able to remove plaques from the brain...
     
    Lissa likes this.
  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    It's interesting because I'm finally instituting this diet more. I've upped fats a lot and that has helped to reduce carbs and I have felt better. I am certainly curious about the insulin and metabolic syndrome connection. Something is going with carbs and alcohol and me - I don't know if I have metabolic syndrome but that problem with those items as been there for 30 years.

    I just added a link to one of Marco's posts to the blog
     
    Lissa and Issie like this.
  9. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I just added a bunch of stuff from Marco's fascinating blog on the possible intersections between diabetes and ME/CFS

     
  10. Issie

    Issie Well-Known Member

    https://en.m.wikipedia.org/wiki/Ketogenic_diet

    Here's the wiki explanation. But, please note.......there are some health issues that people who have them, can't do this diet. I have some of those things. But I have recently gone grain free and will be doing a modified version of it. Dr. Hyman calls himself a paleovegan (or something like that). A cross between the two. Not only is he advocating this diet more, but so is Dr Perlmutter and Dr Ben Lynch. We will see if It makes a difference. I still plan to stay more vegan.

    Some of the docs recommend intermediate fasting and or doing occasional several day juice or smoothie fast. I've done two of the smoothie fast and it made noticeable differences.

    Thanks for bringing some of @Marco thoughts and research back. He has a brilliant progressive take on things. I haven't talked to him in awhile.

    Inflammation was a big part of the picture. And doing things to get that down is important. It's was a nice seminar and very enlightening. I thought one of the keys was what we put in our mouth.....be it food, meds, supplements or toxins in or on those. Detox is a must.
    Issie
     
  11. Phil Hayward

    Phil Hayward Member

    "...A look at this large protocol will find alternative treatments that many in the ME/CFS and FM community are familiar with..."

    Wow, absolutely. Great article, Cort. There are so many possible hypotheses on why these multi-pronged alternative / natural approaches might work for more than one related condition. You've done a great job bringing the threads together for what many different conditions have in common. I had forgotten that there is small blood vessel damage in diabetes, and this leads to similar symptoms under exertion, to FM.

    Maybe the mechanisms are different in each condition but the benefit can be had regardless. I have assumed that the blood flow difficulties in FM are due to blood vessels being trapped in stuck myofascia, and theoretically, unsticking the myofascia might allow the flow to be restored. But my inability to sustain any slow jog as yet, suggests that I am not there yet in spite of all the progress I have made.

    Heavy metals; yes - my cadmium poisoning may take years to flush out, if ever. Unfortunately cadmium does not show in hair mineral analysis testing until it has reached saturation in the renal system.
     
  12. Sue Stevenson

    Sue Stevenson Active Member

    Wow. Super thought-provoking and much info here. Thanks, Cort
     
  13. This all makes good sense to me. I recovered from ME/CFS many years ago by doing something very similar. I did it because orthodox medicine clearly did not offer effective treatment so I decided to give the alternatives a try since I ad nothing to loose. I followed various alternative options which amounted to an approach very similar to the one advocated here. People have asked me what 'worked'; the answer is all of them together. i can't single out any thing in particular but I used heaps of supplements and on the diet front i did find 'green juice' useful. i.e. a juice based on organic celery and cucumba with anything else you fancy added. I also used lots of fresh oil and added to me DHA intake by grinding linseed in a price grinder everyday to make sure t was fresh.
    I do hope all these suggestions help some give it a go to follow and that some people gains some improve. Phillida
     
  14. Issie

    Issie Well-Known Member

    I cleared high arsenic with cilantro. Took months.

    Word of warning - chollera is highly talked about to use for heavy metal detox - I threw up til I couldn't any more. Seems it's a common thing to happen and not all is without issues. It won't be something I plan to try again.

    Phil, what are you doing for cadmium?

    I plan to do more smoothie fast and get some EDTA.. Of course cilantro will continue. I do lots of liver support and lymph drainage supplements. And use D Earth (silica was one thing talked about to help with/prevent Alzheimmers.) Takesumi charcoal as a binder. I have a bentonite clay but haven't used it yet. As you detox, be sure to use binders to take it out of the body or it recirculates. You have to have good elimination in place before attempting this. If you dont, then enemas may be temporarily needed. (I personally don't agree with long term colonics. I know people who became totally dependant on them and their bowels would no longer work on their own. They also became addicted to them.) Herbals work well if you get the combo correct. Aloe is wonderful.

    The immune system is mostly in the gut. Get it working properly, eliminate parasites, protozoa and toxins. Feed your body whole, organic, unrefined foods. Detox and rebuild. Good probiotics and prebiotics. Get inflammation down by eliminating grains and using good whole food sources of fats. Use low glycemic fruits only. And have a rainbow of colorful veggies daily. If you aren't vegan - antibiotic free, hormone free, non GMO fed meats. They said no big mouth fish. Salmon was talked about, but not farm raised.

    If I think of more, I'll add on.

    Issie
     
    Last edited: Aug 3, 2016
  15. Issie

    Issie Well-Known Member

    Oh, they talked about the fact that we can be genetically predisposed to Alzheimmers. Some do have the gene. But they felt it could be left dormant by doing all these things. Environment and what we do, they felt played a larger role in it. But we start to get it in our 20s and it takes however long it takes to manifest itself. So what we do when we are younger may determine our final outcome. But.....can be, possibly, reversed if we put all these things in place.

    Issie
     
  16. Ria Roegiers

    Ria Roegiers Member

    Hi all, marine phytoplankton is very good for the brain.
    My old dog was showing signs of dementia last year (it took me a while to figure out what it was that was ailing her) and after giving her the plankton for a couple of days she got the alert look back in her eyes, her head was not drooping anymore and she walked instead of stumbled. She gets it as a daily supplement now, as does my other dog and I of course.
    I started oil pulling five days ago, with organic sesame oil, once a day. Bad day yesterday, headache and completely listless, probably a good sign :) It's early days yet but brainfog seems less!!
    Does anyone have experience with this technique?
    Gut problems (chronic stomach inflammation and IBS), inflamed shoulder muscle, cleared with qigong (Yuan Gong) which is an ongoing practice.
    Self compassion and self love.
    All the best.
    Maria
     
  17. Issie

    Issie Well-Known Member

    I use a DHA that is a vegan source from algae. Not sure if that's the same as what you are talking about. It does help.

    Issie
     
  18. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    How important was pacing for you Phillida?
     
  19. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Yes, they highly recommended that everyone get tested for the APoe gene, I think it was, polymorphism and if positive for it, get on the right diet and add supplements, do stress reduction, etc. Most doctors don't test for it because there's been no treatment for AD The damage that causes Alzheimer's begins early before there are any symptoms.

    This study was funded entirely by foundations and individuals - no NIH money involved - which doesn't surprise me. I believe that a larger study is underway.
     
  20. Snow Leopard

    Snow Leopard Active Member

    A small number of case studies? It's interesting, but I'm fairly jaded these days, I don't get excited over uncontrolled pilot studies.
     
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