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Night walker
6th December 2014, 08:31
Hello, especially hello Ray,
Wondering if there is any knowledge or use of the above supplement. Also called magic bullet. It forms part of the Deanna Protocol I think but they talk about not being able to take enough.
Just wondered if anyone has any more info than is on Wikipedia if you take it where do you source it from and if you' r any experiences good or bad around it.

Hope everyone enjoys today.
Ta
Sylv x

Terry
6th December 2014, 12:12
Hi Sylv;

Oxaloacetate was not on the Deanna P when I took it. DP did have sheets that explained very clearly what each supplement did so I don't know if an updated one is available. Clearly Ray is a good person to ask. I did google it and found this link but I don't know how reliable the info is;-

http://www.naturalhealthadvisory.com/daily/natural-health-101/3-ways-an-oxaloacetate-supplement-can-protect-you/

Oxaloacetate is an obscure molecule that plays a role in energy production. Researchers have learned that it can also remove excess glutamate from the bloodstream. Glutamate can cause extensive brain damage in the event of a stroke or concussion, and it is a preferred fuel for many different types of cancer cells. Oxaloacetate’s removal of glutamate has a protective effect against these hazards.

Regards Terry

john
6th December 2014, 12:23
This is an update on what is in the DP posted today on alstdi. You will find oxaloacetate listed below and information as to what is does suggested dose(one an hour) and a manufacturer.



Deanna Protocol 3.0 is out, FWIW. Out with caprylic acid and (to some extent) GSH. From the most dauntingly complicated of protocols, DP has turned into just about the simplest. At this rate, DP 6.0 will have zero ingredients:=)

Code:

AAKG 18g/day
AKG 300mg every hour
5-HTP 50mg/day in PM with Niacin
Niacin 250mg/day
GABA 250mg x2 /day
Ubiquinol 400mg 3xday


A. Alpha Ketoglutarate [AKG] and Arginine Alpha Ketoglutarate [AAKG]:
AKG is a key supplement to providing energy to the cells.
• We suggest both AAKG and AKG for the following reasons: 1) AAKG, due to the Arginine, is
more palatable and easier on the stomach. The Arginine allows you to receive a larger dose of
the AKG with minimal stomach discomfort. However, Arginine has limitations; if you exceed
18g of Arginine AKG per day, it may cause stomach and intestinal discomfort. The Arginine
also produces Nitrous Oxide [NO], a free radical. This may have unwanted side effects. A side
effect of NO is swelling of the lower extremities, which is already a side effect in ALS. Arginine
can also aggravate a preexisting heart condition. Arginine can also activate the Herpes simplex
virus. Arginine also may have beneficial effects in ALS. Recent research reveals that when
cells die they release glutamate into the extracellular space [Space between cells].This
glutamate causes the death of nearby cells. Blood vessel cells in contact with nervous tissue
absorb the glutamate and pass it into the circulating blood. Since the NO produced by Arginine
increases blood flow by dilating blood vessels NO might be beneficial by helping to remove
glutamate from the nerve tissue by increasing blood flow to the area. Future research will
attempt to determine the value of Arginine. 2) Plain AKG does not have Arginine and will
allow you to continuously deliver energy to nerve and muscle cells in between doses of AAKG.
AKG is less palatable and harder on the stomach, but manageable in smaller doses. Page 2 of 4
12/4/2014
• AKG is an important source of energy for nerve and muscle cells. We do not know how long
the AAKG or AKG remain in the body. Our goal is to make sure the body has AAKG or AKG in it
whenever the cells need energy.
AKG/AAKG DOSE - The dose is determined by the amount needed to suppress muscle
symptoms [fasciculations, twitching, tremors, and cramps]. Based on reports from PALS and
laboratory research, on average, a minimum of 16-18g of AAKG is required to have an effect.
AAKG may cause diarrhea and bloating. Our experience has found that if you start with a low
dose and gradually increase the dose not to exceed 18 grams over time these symptoms may
be lessened or will stop. Do not take total dose at one time. Deanna takes 18g of AAKG and
divides it between breakfast, lunch and dinner. In addition, she takes 4, 300mg capsules of
AKG every 1hr-1.5hrs between doses of AAKG up until bedtime. For the reasons stated above,
if you need to increase the dose of AKG to decrease muscle symptoms, use AKG not AAKG. If
you are very active, you may notice an increase in muscle symptoms. This means you have
used up your energy supply and likely need more AKG.
• AKG is a supplement your body requires daily to keep cells alive. Your body does not store it
or build a reserve. So taking it daily is essential. Please note with AAKG and AKG you may
not notice an immediate change but changes should occur over time and may be subtle such
as lessening of spasms, twitches/fasciculations, saliva, tremors, etc.
• The AAKG you buy should have a 1:1 ratio of Arginine to Alpha Keto-Glutarate (To our
knowledge, Prima Force and Simplesa* are the only 2 companies that manufacture AAKG with
a 1:1 ratio) Most people tolerate it, but some people can’t tolerate it. If you find the AAKG
with the 1:1 ratio causes gastritis even after giving your body time to adjust then use the
AAKG with a 2:1 ratio.
• PALS that have a cardiac condition should consult with their cardiologist or treating physician
before taking AAKG as the Nitrous Oxide in Arginine increases stress on the heart.
B. Complex 1: Complex 1 consists of the substances needed in the metabolism of AKG in the
Krebs Cycle [energy cycle].
1. Ubiquinol is a more potent form of Co Q10. The most effective form Idebenone has
been taken off the market. Thus, it is unavailable, except by prescription and very
expensive. Laboratory data suggests taking 1,000 mg - 1,400mg of Ubiquinol daily. If
a more effective form, such as, Idebenone is used less may be required.
2. NADH can’t be absorbed by the GI system, which is why the DP consists of Niacin, a
precursor to NADH, which can be absorbed by the GI system. Another precursor to
NADH is 5-hydroxytryptophane [5-HTP], and is also absorbed.
C. Gamma Amino Butyric Acid [GABA]: GABA is the primary inhibitory neuro transmitter and
is recommended to counteract the spasticity caused by the quantity of GABA being diminished.
Grogginess is a possible side effect.
• Dose-changes according to the degree of spasticity present in the individual with ALS.
Deanna takes 250 mg 2 times per day. If she feels more spastic, she increases the dose.
NOTE: Before you begin the protocol, take note of all your symptoms especially your muscle symptoms i.e.
muscle twitching, tremors, spasms etc. If after taking the Deanna Protocol™ for 1 to 3 months, you doubt that
protocol is beneficial, stop it for a few days and notice the difference in your muscle symptoms. If the
symptoms worsen or increase, you know the protocol is working. Beginning the protocol again, should
diminish the symptoms. Page 3 of 4
12/4/2014
Please note we have included the following as part of the WFND program for ALS. They are
NOT part of the Deanna Protocol™
II. Antioxidants: Glutathione [GSH]
GSH is the most effective nervous system antioxidant known to man. The best delivery system for
GSH is IV 3000 mg once a week. The dose is determined by what is currently used by neurologists
and wellness clinics. GSH can be delivered by suppository, Liposomal GSH, and Sustained release GSH
[Sold by Thorne Research*]. Deanna gets the IV and takes sustained release GSH. In recommending
this, we have accepted a large amount of research indicating the effectiveness of GSH in neutralizing
ROS [reactive oxygen species] which we know are detrimental to nerve cells.
III. Exercise
Suggested-Respiratory therapy, speech therapy, personal training and/or physical therapy (not to
exhaustion) - including active range of motion exercises, progressive resistance exercises [PRE]/
strengthening exercises, aerobic exercises, hand exercises, stretching to maintain joint mobility. PALS
on the Deanna Protocol™ have reported improvement with PRE. Therefore, we suggest doing
strengthening exercises, but not to exhaustion (the point at which you can’t use the muscle).
IV. Massage
Massage with extra virgin coconut oil. Anecdotal evidence reveals that muscle strength and size can
be improved with this regimen. We have anecdotal evidence that massage with coconut oil can
increase the size of atrophic muscles. Once per day massage oil into muscles that have atrophied or
diminished. Massage oil over entire body twice a week. The coconut oil is absorbed through the skin
and supplies energy directly to the cells in muscle and nerves.
V. Oxaloacetate
Research has shown that Oxaloacetate is a supplement that neutralizes extra cellular glutamate,
which is responsible for nerve cell death. Unfortunately, it only stays in the body for 15 to 30 minutes.
It would be ideal to take one capsule every hour. The only manufacturer we found that makes it is
Natural Dynamix and the product name is Endure DX.
Ancillary Supplements
These are NOT part of the WFND program for ALS because we have not done research on these
substances and don’t have anecdotal evidence of their benefit. However, since they are recommended
by the NIH we felt we should mention them.
These supplements can be supplied by a healthy diet, but PALS may need more than the normal
population. The proper dose for ALS patients is unknown. The NIH has published a manuscript
“Nutrition and Supplements in Motor Neuron Diseases”. Please refer to this document for details
www.ncbi.nih.gov/pmc/articles/PMC2631353/. These supplements come in various forms. For
example, Deanna takes B12 orally and via IV or injection.
*Please note not all companies make quality supplements. It is important to get good quality supplements.
Your local health food store or wellness clinic should be able to advise you regarding good quality
supplements. Some of the people taking the supplements have purchased from the following companies:
Thorne Research, Life Extension, Prima Force, Simplesa, Kirkman Labs, Natural Dynamix and NOW. WINNING
THE FIGHT, INC does not endorse these companies, and there are likely other companies that sell quality
supplements.
Mike
Limb onset 11/13, UMN MND diagnosis 5/14

Terry
6th December 2014, 12:39
Hi John;

Interestingly enough, all apart from the Niacin 250mg/day were on the original list, there was something that done a similar job to Niacin on the list. All other ingredients were the same apart from now taking 3X as much Ubiquinol.

Regards Terry

ccinjersey
6th December 2014, 19:42
Hi John

Just wondering, does anyone know how Deanna of the Deanna Protocol is doing these days ? When my friend was on the protocol, and I had asked Dr. Tedone how his daughter was doing he said she was ‘stable’ that was two years ago. Wondering also if stable meant no further progression ? Does she or her father visit the alstdi site?

CCxox

john
6th December 2014, 20:33
Hi CC,

No they don't visit at all. I don't know if they post on winning the fight website.
People occasionally ask if anyone has any good experience using it but no one replies yes. I think because everybody has a different experience with this disease treatments probably also need tailoring to individual needs in the same way Ray has experimented to arrive at a regime that suits him. Not very satisfying but it suggests if people have the time experiment it may be possible to make some impact on disease progression. A shame the medical industry aren't willing to explore and see what can be achieved.

John

ccinjersey
6th December 2014, 20:59
Yes it really is a shame and very disheartening that the medical community won’t even take a look at what Dr. Tedone was/is trying to achieve with his protocol.

What’s astonishing it that he is a Doctor himself, and the few email exchanges I shared with him he was struggling, but determined to get his medical profession colleagues on board with his protocol. One would think that a doctor trying to save his daughter’s life, and devoted his to finding something, anything to help her would at least deserve some investigating, and recognition from his own profession. He was finding ’Hope’ in many, many bottles as Ray seems to have found as well.

How I wish my friend stayed on his protocol all this time…who knows maybe the decline would not be, and she would be holding ’stable’ as well, but coulda, woulda, shoulda, is really pointless thinking.

All the best to those giving all possibilities a try, if it can work for some it can for many in my opinion.

CCxx

ccinjersey
7th December 2014, 00:08
For anyone interested on the Deanna Protocol. I went to the Winning the Fight site, they seem to be still going strong. Dr. Tedone presented a video at that can be watched on this site.

It’s a very, very interesting video. He spoke about many of the same nerve degeneration and rebuilding of cells that Ray here speaks about. He also seems to be tackling the illness in many of the same ways Ray does, restoring and rebuilding dying cells with replacement supplements, as well as a diet regimen.

He stated his daughter first showed symptoms in 2007 but was diagnosed with als in 2009. Deanna is still posting there, and the most recent picture of her shows she has a trach as well, not surprising since it quite common here to have it done if needed.

It is a very informative site for anyone interested in the protocol. One thing that stood out that Deanna posted was something along the same lines that Rays says. I will paraphrase it because I can’t remember it word for word but she was basically saying; it’s hard to see the improvements or just stabilizing the condition, it a gradual process, the only real way to see it is when stop taking the protocol, and notice if there is a difference for the worse if so then you know it is working.

Will say one thing for sure that Winning the Fight seems to be offering that nowhere else does, Hope :)

CCxx

fishmate12
7th December 2014, 01:34
Hi Sylvia,
I've never heard of it, and not even Googled it,.from a little bit i read, it only lasts 30 mins in the body,
So is the body's natural defenses attacking it/removing it, or what, personally i wouldn't trust something that can only last a short time,
it doesn't sound right,..like it's some form of alien substance the body quickly renders "harmless"...the jury's out on this,.

CC,
The most important point about DP is,...has anyone other than his Daughter,..stopped or slowed progression,..in the past 5 yrs,
it's been on the go that long, but i've never came across any Site claiming of a success for anyone.
If Deanna is now on a Trach,...does that not mean she's progressing still, albeit slowly.
Take care,
Ray x

ccinjersey
7th December 2014, 03:39
A good question Ray. There seems to be forum members on that site that state they are feeling the benefits of the protocol, to what extent all seems very individual.

If Deanna experienced her first symptoms in 2007, and we are now heading into 2015 does it mean she is just slowly progressing with this illness or is it the effects of the protocol ?? There are forum members here living with mnd just as long, and not on the protocol. Are they too just slow to progress or would taking the DP or your protocol allow them to progress even slower ??

I guess it comes down to a leap of faith, a shot in the dark, a chance, a hope, possibilities, but when the chances are slim to none it seems to make sense to go with slim, and of course quality of living.

You have stopped your progression, if it can work for you it’s very possible it could work for someone else. Your doing here what he is doing there. Maybe consider joining forces with Dr. Tedone, your both on the same page already, you both might have the missing pieces to this puzzle.

CCxx

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