www.perpetualcommotion.com
"Give with a free hand, but give only your own."
 -- J.R.R. Tolkien The Children of Hurin
Nutritional Alternatives

I have nothing to sell you.

The purpose of this web site is to provide you with information for when you meet with a physician to discuss what can be done for someone suffering from brain failure.  You will have a list of questions to ask, and sources to read so that you can ask them intelligently.  I want to share some of the information I've accumulated in my search to help my mother.

Synthetic pharmaceuticals and physician supervised treatment is certainly the preferred course of action to help the brain failure suffererBut while you wait for the physicians (who may have treatments) to get off of their duffs and try something, here are some things you can try.  Research the following multi-front attack:

[Update: Nov. 30, 2008... The following material is old and needs to be updated.  See Patricia's Protocol for what I feel are the essential supplements she is getting.]


See also Dale's List


The following is speculation.
- MCTs           - to provide an alternative energy source due to neuronal glucose
                   hypometabolism
- Phytic Acid   
- (a.k.a. IP6) to chelate free metal ions involved with nerve cell damage
- Curcumin       - to dissolve
amyloid-β proteins which might cause neuronal damage
- Lithium        - to prevent tau protein corruption, induce neurogenesis
- Cinnamon       - to prevent tau proten correuption, aggregation and undo aggregations
                   already formed
- Niacinamide    -
to prevent tau proten correuption, aggregation and undo aggregations
                   already formed
- Methylene Blue - To prevent tau protein corruption, aggregation, undo aggregations
                   already formed, and prevent neuronal senescence.

Unfortunately, medicines and therapies don't always work for every person.

For the most part, we don't discuss health food, but rather, naturally-sourced medicines from plants* and animals, and therapies that are on the fringes of medical research. Most medicines originate from plants and animals, so discussing and trying those that may help is appropriate. Every new therapy for treating a disease starts out as a radical idea on the fringes that the mainstream is slow to accept.

Some of us want to try some of these unproven things because we know that the clock is ticking and the conventional "standard of care" doesn't help much.

The flow usually goes like this. Some observation is made about an aspect of the disease or the effect of a substance. Then people scour the available literature to find research to back up the observation and report what they find. Finally, some take it upon themselves to try something-- usually based on a research paper they found-- and report on their success or failure. We've had few successes. But it is important to know what other people have tried so that the rest of us can either duplicate a success or learn from a failure. If we know what was tried, how much, how often, how long, and what with, trial and error may lead us to a correct strategy.

It seems likely that there are more than one path that lead to the same destination. MCT oils (used as a medicine) may work for one a person on one path, but not for another. Eradication of the Helicobacter pylori bacteria may halt the progression of Alzheimer's disease for those individuals who have an H.pylori infection, but not for those who's AD was initiated by head injury or genetic predisposition.

So, is it possible that one man's medicine is another man's poison? Certainly.

-----

*Note this observation from Schubert's page on the Salk Institute's web site:

...Because plants lack an immune system, they instead synthesize drug-like molecules to defend themselves against infectious pathogens and insect predators. Most of these molecules have numerous biological activities, and they are the basis of much of the current pharmacopoeia. They have not, however, been exploited for the treatment of chronic neurological diseases...
http://www.salk.edu/faculty/schubert.html

Nutritional Alternative Protocols
:

The PC Protocol:

Curcumin:          300-500mg 2 to 3 times per day, at least 8 hours apart, if
                   possible.
                   Targetting amyloid beta and "oxidative stress" from iron and
                   copper
  (~12mg/lb of body weight)
Phytic Acid (IP6): 1/2 tsp. (heaping ~400 to 500 mg) in orange juice, on an empty
                   stomach, at bedtime or first thing in the morning, 1 hr before
                   breakfast.
                   Targetting excess iron and other excess minerals
Cilantro           1/2 cup, chopped (about 5 stalks)... for 3 weeks, every 6 months
                   Used to "dislodge" minerals and metals like mercury, lead,
                   aluminum, etc., which are later flushed out by IP6 or other
                   chelators (possibly curcumin?)
Resveratrol        (red wine extract), 200mg, 1 to 2 times per day.  Antioxidant.
                   (Jarrow "Resveratrol Synergy": Resveratrol 200mg, grape seed
                    extract 50mg, grape skin 100mg, green tea 200mg, vitamin C 100mg)
Green Tea          (extract), 200mg, 1 to 2 times per day.  Antioxidant.
                  
(Jarrow Resveratrol Synergy)
NAC                (N-acetyl-cisteine), 500mg, 2 times per day
                   precursor to Glutathione, and antioxidant (Jarrow ThioNac)

Vitamin E          400 IU
Vitamin C          500 mg  Optional if fruits or juice are included in diet.  Also,
                   should not be taken simultaneously with NAC.  See note 7.
Asprin             81 mg           
Ginkgo             120 mg
Vitamin B6         ~50 mg    -Can be a "B complex" with B6, B9, & B12
                             May need a 30 mg magnesium supplement.  Bananas are
                             a good source.
Folic acid(B9)     800 mcg
Vitamin B12        500 mcg

Garlic extract     600 mg
Fish oil           1000 mg  Antioxidant properties (DHA/EPA??)

CDP Choline        250 mg once per day (to start with)  (Jarrow Citicoline)
                   A possible symptom reliever, to improve mental abilities.  Not
                   a preventative.
CoQ10              30 mg per day (to start with) coenzyme Q10.  To improve mental
                   alertness, energy, and hopefully slow disease progression
Silymarin          250 mg per day (Jarrow milk thistle) antioxidant

Cranberry          8 oz. of cranberry juice cocktail per day.  To help prevent
                   urinary tract infections (UTI).  Also high in tannins.

Most pills are crushed and capsules opened.  They are mixed with about 6 oz. of applesauce and about 1/8 tsp. of cinnamon (to cover the taste of he supplements).

Target effect of the supplements:

1)  The McDougall diet of complex carbohydrates, whole grains, fruits, nuts without
    animal protein, added fat, or dairy products.

    There are many health benefits to following this diet even if diet alone is not
    enough to address A.D.  It basically adheres to a vegan diet, but since small
    amounts of meat on special holidays is OK, just not the typical "three feasts per
    day" American diet, it isn't a strict vegetarian diet.  Benefits commonly
    reported that would help a vascular dementia sufferer:
    -  Lowers cholesterol without drugs
    -  Lowers blood pressure
    -  Eliminates Type II diabetes symptoms
    -  Eliminate angina and allows the body to reverse artery disease

2)  Curcumin (extract of the curry spice turmeric)
    In studies done with transgenic mice, curcumin "disaggregated" the amyloid-β
    plaques that have been proven to cause the symptoms of Alzheimer's disease.
    Piperine found in abundance in common black pepper has been found to increase
    the amount of curcumin that gets into the blood.  But piperine may cause problems
    absorbing other medications, so it may not be a good idea to use it.  Perhaps
    using a little more black pepper on food would be good enough.  Curcumin is also
    an iron and copper chelator.
    Note:  Curcumin may adversely augment the effects of prescription blood thinners.

3)  Phytic Acid (a.k.a. myo-inositol hexakisphosphate, InsP6, or IP6)
    This supplement is generally sold as an "immune system builder" for those
    suffering from cancer. 
Since the elimination of excesss iron has been shown
    to have a positive influence on arresting the progression of AD, phytic acid
    supplementation may have a positive effect.
   
Taking 1000 to 2000mg per day (on an empty stomach) for 30 to 90 days, along with
    daily doses of curcumin,
ginkgo, cilantro, and garlic; toxic metal ions might be
    successfully flushed out of the body
.
   
    After the initial 30 to 90 days, a lesser amount might be adequate for
    maintainence. 
    Please note:  Someone who is anemic (not enough red blood cells) may need more
    iron in their diet, and phytic acid would not be appropriate.

    Another thing-- since phytic acid is found naturally in abundance in whole
    grains, legumes, and nuts, the McDougall diet might provide more than enough for
    maintainance.

4)  Ginkgo-biloba
    This herb is used in Europe to treat early stages of dementia (from various
    causes). It is claimed to be just about as effective as those expensive
    prescription drugs the pharmaceutical companies are pushing.  But that isn't much
    of a recommendation.

    It is also a anti-coagulant.  That's good for those at risk for a stroke, but it
    can magnify the effects of other anti-coagulant drugs like prescription heparin.

5)  Garlic
    This is another natural anti-coagulant and a mild metal chelator.

6)  Vitamin B12 and Folic Acid

7)  Vitamins C and E
    Note: avoid administering vitamin C and NAC simultaneously during inflammatory
    response, as it may promote hydroxyl radical formation in the presence of iron
   (Fe2+).

8)  Cilantro-- three weeks of 1/4 cup (chopped) per day for 3 weeks
    This is part of a "home toxic metal chelation" procedure.  Cilantro is said to
    "dislodge" metal ions that are just hanging around in various body tissues, and
    up to no good.  But after the metals are flushed out into the open, so to speak,
    you need a metal chelator to grab onto them, and flush them out.

9)  Scyllitol (a.k.a. scyllo-inositol, cocositol, quercinitol)
    In mice, this naturally occuring plant sugar does wonders for AD.  It has been
    proven to actually dissolve the amyloid beta plaques that are thought to cause
    brain damage in AD sufferers; and restore near normal mental capacity.  We can
    only hope that it would be as effective in humans.  However, even in plant foods
    rich in scyllitol, like the coconut, it is only something like 500 parts per
    million.  Ethanol (grain alcohol) consumption has been linked to increased levels
    of scyllitol in the brain, but ethanol itself may have side effects that make
    consuming it in large enough quantities to have an effect inadvisable.  So, what
    we need is a source for scyllitol supplements, or a process for concentrating it
    from plant scources.

10) Resveratrol
11) N-acetyl-cisteine
12) Green Tea
13) CDP-choline (a.k.a. citicoline)
14) CoQ10
15) Lithium (lithium orotate)
16) Medium Chain Triglycerides (MCT)
17) Cinnamon (water soluble extracts)
18) Magnesium
19) Acetyl-L Carnitine (or L-Carnitine)


Sharon Comden's Supplement Protcol for combating her Corticobasal Syndrome symptoms

Longvida curcumin,1000 mg (bioavailable curcumin, available in capsule and powder forms from phytosensia.com)
Vitamin C 500 mg (at least)
[ 8/14/2012: reports that she "increased the curcumin in the regimen to three times a day and a total daily intake 3500 mg (3.5 grams)." That's a LOT of curcumin!]

DHA/omega 3 fish oil 1200 mg (one enteric coated, from Costco, Kirkland brand)
     - on an empty stomach in the morning and at bedtime.

CoQ10 600 mg [Later revised down to 300??]

Trehalose 25 grams (NeuroCoatT, 1 tablespoon twice a day dissolved in a beverage or with food),
    - a commercial sweetener shown to be safe and beneficial with Huntington's Disease.
    - seems to improve articulation as well and compliments the action of the Longvida curcumin.

Baby aspirin every other day.

Improvements in speech after four weeks on the curcumin/DHA/etc.
At 4.5 weeks the curling fingers were gone, and gait/limb movements returned to normal speed.
The dose of Longvida curcumin was lowered my to 500 mg twice a day after a few weeks, following the "initial induction phase" when the curcumin levels are rising to therapeutic levels in the brain.

Later added:
[I think I would investigate adding MCT oils to the regimen at least during the "initial induction phase" since the damaged but still viable brain cells are having trouble using glucose.  See Dale's List for an example.]

See these files:  Neuro-preservation Regimen Background
                                            July 2012 update

Dr. Mary Newport's Regimen
4 tablespoons of 50% MCT oil + 50% Coconut Oil at each meal and then another 2 tablespoons at bed time.

NO HYPE protocol for Dementia with Lewy Bodies (DLB):
For your consideration, a protocol devised by "NO HYPE" on the BodyBuilding.com forum.

"Current protocol [March, 2008] consists of:"

TUDCA [tauroursodeoxycholic acid - NO HYPE reported good results before adding this]
NAC
Na-R-ALA
resveratrol
grape seed extract
gingko biloba
vitamin C
silymarin [extract of milk thistle?]
curcumin
CDC choline [CDP-choline? stands for cytidine 5-diphosphocholine]
EPA/DHA [fish oil?]
Coenzyme Q10
melatonin
B-complex
Methyl B-12
folic acid


"Supplements that I would like to add:"

Pyritinol
vincamine
Hydergine
Scyllitol [need a source!]

"Note: considering EDTA for iron chelation"

"Throughout the timespan of about 10 months, I have literally witnessed a DRAMATIC, visible transformation in physical appearance, cognitive function, and overall way of life."

"I started him on the [protocol] (along with other supplemental nutrients), and within about 3-4 WEEKS, he was walking WITHOUT the walker, his posture had SIGNIFICANTLY improved, the severity of autonomic dysfunction had lessened, and the tasks that were a nightmare in previous weeks soon became simple once again."

"Additionally in my opinion, I STRONGLY feel that these antioxidants when taken regularly, will significantly reduce the risk of developing this disease."

"With the exception of alpha-synuclein accumulation and somatic dysfunction, inflammation and oxidation are the key physiological substrates underlying the progression of dementia."

"The inhibition of oxidation and the attenuation of inflammation can be achieved (among other nutrients) via polyphenol antioxidants. Polyphenols have been found to effectively inhibit ROS (wich in excess, causes significant damage and/or death to cell structures) and peroxynitrite (one of the main mediator pro-inflammatory molecules)."

"Other non-polyphenol antioxidants that aquire the synergistic potential to accomplish the above mentioned tasks include: N-Acetyl-Cysteine, ALA, ubiquinol/idebenone, curcumin, selenium, fish oil, vitamin C, vitamin A, vitamin E, melatonin, ect. These antioxidants will also assist in inhibiting excessive cytochrome P450-induced, free radical cell damage."



Cerebral's "Ultimate Alzheimer's Cocktail"

1. Galantamine (4-16mg/day)
Prevents the breakdown of acetylcholine, facilitates memory functions, appears to modulate both beta amyloid plaques and cytokine proteins.

2. Alpha GPC (500mg-1.5grams/day)
Precursor of acetylcholine, increases human growth hormone secretion to build new cells, crosses the blood-brain-barrier (BBB) better than any other choline source.

3. Spirulina (300-800mg/day)
Enhances the immune system, exceptional protein source, modulates cytokine and tumor necrosis factor (TNF) proteins that contribute to AD pathogenesis, source of B vitamins and omega fatty acids DHA and EPA.

4. Ashwagandha (500-800mg/day)
Boosts immune system functioning especially in regards to the brain, facilitates nervous system rejuvenation, prevents stress-related mental decline.

5. Fish Oil (1,000mg/day)
Exceptional source of omega fatty acids that help fuel the brain.

6. Curcumin (1000-3000mg/day)
Helps immune cells clear out amyloid-beta plaque build-up.

7. Resveratrol (200-1,000mg/day)
Reduces inflammation, attacks cancer cells, and aids in neuroprotection.

8. Piracetam (500-1,000mg/day)
Increases blood flow and oxygen to the brain, and helps to slow decay of brain cells.

9. High quality multi-vitamin rich in B vitamins
Critical to the formation of red blood cells, assists in overall brain development and nutrition.

10. Cinnamon (1,000-3,000mg/day)
May help with Tau tangles, modulates glucose.

11. Blueberry Extract (500mg/day)
Exceptional antioxidant, high anthocyanin content, vitamins C and E.

12. Ginkgo Biloba (500-1,000mg/day)
Increases cerebral circulation and brain cell oxidation.

13. Green Tea Extract (500mg/day)
Excellent antioxidant with L-theanine.

14. Uridine (50-100mg/day)
Building block of RNA and DNA, contributes to the production of phosphatidylcholine

15. Aspirin (250-500mg/day)
Anti-inflammatory, increases cerebral circulation, and manages pain.

16. Acetyl-l-carnitine (1,000mg/day)
Reverses damage to mitochondria associated with aging and has neuroprotective properties.

17. Cat's Claw (uncaria tomentosa)
Assist's the immune system, reduces inflammation, help with beta-amyloid plaques, inhibits TNF (tumor necrosis factor).

And please do not forget a healthy diet consisting of fresh fruits and vegetables, fish, nuts and seeds (such as walnuts), and clean water.

synapse@cerebralhealth.com
http://alzheimers.infopop.cc/eve/forums?a=tpc&s=387101241&f=762104261&m=1891020913&r=5691062913#5691062913


SunHiker's list

Supplement                            Amount Per day
----------                            ------ -------
B-12 (sublingual methylcobalamin)     5000 mcg  1

Galantamine hydrobromide                 8 mg   3
Lithium orotate                         10 mg   2
DHA                                    500 mg   2
EPA                                    200 mg   2
Alpha lipoic acid                      600 mg   3
Ginkgo biloba                          120 mg   2

N-acetyl cysteine                      600 mg   2
Vinpocetin                              60 mg   1
Cinnamonium verum                      600 mg   5
Curcumin                               500 mg   3
DMAE                                   130 mg   1
Bacopa                                 250 mg   2
Melissa                                500 mg   4
Melatonin                                3 mg   2

Pantothenic acid                       100 mg   3
Choline                                200 mg   3
Acetyl L-carnitine arginate DiHCl      300 mg   2
Acetyl L-carnitine HCl                 300 mg   2
Gotu kola                              300 mg   2
Uridine                                 50 mg   2
IP6 (inositol hexaphosphate)           500 mg   2
A-GPC                                 1800 mg   1
Phosphatidyl serine                    300 mg   1

He also takes multi-minerals, B, C, E, and K vitamins, CoQ-10, folic acid, and a few others.

--C
http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/8421076613?r=6331085913#6331085913

   
I have posted on this topic earlier this month but will update you with my observations. I am providing a host of treatments for my wife that include at least a dozen supplements and a few prescribed medications, the most obviously effective being prazosin for sleep and for emotional outbursts including sundowning and also delusions.  Additionally, she has been receiving acyclovir 200 mg 2x/day for several months now.  She is APOE4+ meaning she has the so-called AD gene.  She has a life long history of cold sores occurring at a rate around 6/year.  Before trying acyclovir I did try l-Lysine but stopped it when she developed a cold sore on her lower lip that would not go away until I started acyclovir at which time it resolved quickly.  Because she is receiving so many supplements and three prescribed medications (Aricept, prazosin, and Acyclovir) it is impossible for me to be able to determine what if anything might be helpful for her.  However, it is my impression that her AD has been progressing very slowly if at all over the past several months so it is indeed possible that acyclovir might be a contributor to slowing or perhaps even halting for the moment disease progression.  However, just to be cautious, I should add that it is my impression that AD progression can be highly variable within as well as between patients so I may simply be detecting a temporary lull in her disease progression that has little or nothing to do with the many things I am giving her to treat her condition. Since starting acyclovir at a relatively low dose, she has had one mild and short lived cold sore. To conclude, it appears that for the past several months my APOE4+ wife who has a long standing history of cold sores may be experiencing some sort of remission in AD progression.  This happy result may be due to a combination of factors, or may be due to nothing I am doing for her at all.  However, in the treatment mix I am giving her is included acyclovir. I have had her on Nutiva coconut oil for maybe 2 yrs and more recently MCT oil (10 drams 2x/day). It is possible the changes I have observed may be attributable to that as well.

I do believe something is working for her...just not sure what.
http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/6984024187?r=3024005287#3024005287

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References:

Natural options for Alzheimer’s Disease treatment - Alternatives to Alzheimer's Medication

While scientists have not fully determined the actual causes of Alzheimer’s disease, a number of treatment options have been proposed or tried over the years. Although much more research needs to be done in order to find out the role of these supplements in Alzheimer's disease treatment, I think it is appropriate to give them a try since this condition currently has no cure or effective treatment. You are not likely to find this information in any official Alzheimer's disease association or Alzheimer's foundation. Some natural options for Alzheimer's disease treatment or prevention include (discuss with your doctor first)

[Interesting and lengthy discussion.  Note the part about "inhaled anesthetics isoflurane and halothane, may be another cause of Alzheimer's disease"]
http://www.raysahelian.com/alzheimer.html
http://www.raysahelian.com/curry.html

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Updated: December 20, 2009
Inception: June 5, 2006