For me, PD is a choice, maybe it is for you too


#1

I have not had any PD symptoms for over 4 months.  I am no longer on any medication.  I also feel like I am 20 again.  Perhaps you can too...

Sleep

Recommendation:  Minimum of 8.5 hours of quality sleep per day.  Wake up naturally instead of with an alarm.  If your body needs more sleep, then let it sleep.

Exercise
Recommendation:  Minimum of 20 minutes of cardio 3 times per week (60-80% maximum heart rate).  Full body resistance training once per week, or divided into muscle groups throughout the week.

Stress Management
Recommendation:  Identify consistent and predictable stress in your life and work to minimize environmental stressors and when not possible, at minimum, learn how to control your reaction to such stress in the most positive way.

Clinoptilolite
Recommendation:  Take two tablespoons at bedtime, at least one hour after any supplements or medications have been taken.  Do this on for one month and then off for one month.  Continue this cycle.

Coenzyme Q10
Recommendation:  800mg at morning, 400mg at lunch, 400mg at evening, and 400mg at bedtime. (adjust slowly if it upsets stomach)

Reishi
Recommendation:  540mg at morning, 540mg at lunch, and 540mg at evening

B Vitamins (Lypo-Spheric - Fully Active)
Recommendation:  Take 1 packet at morning on an empty stomach.  Do not eat for 15 minutes

Glutathione (GSH) (Lypo-Spheric)
Recommendation:  Take 1 packet at morning on an empty stomach.  Do not eat for 15 minutes

Lipoic Acid (R-ALA) (Lypo-Spheric)
Recommendation:  Take 1 packet at morning on an empty stomach.  Do not eat for 15 minutes

Vitamin C (Lypo-Spheric)
Recommendation:  Take 1 packet at morning on an empty stomach.  Do not eat for 15 minutes

NAC
Recommendation:  600mg at lunch, and 600mg at bedtime

L-Tyrosine
Recommendation:  500mg at lunch, 500mg at evening and 500mg at bedtime

Vitamin D3
Recommendation:  5000iu at morning

Astaxanthin
Recommendation:  4mg at morning, 4mg at lunch, 4mg at evening and 4mg at bedtime

Omega 3
Recommendation:  500 EPA/250 DHA, morning, noon, evening, and bedtime

Chaga (Dihydroxybenzalacetone)
Recommendation:  350mg at morning, 350mg at evening and 350mg at bedtime

Horse Chestnut (Triterpenoids)
Recommendation:  350mg at lunch, and 350mg at bedtime

Green Tea (GTPs)
Recommendation:  400mg at evening

Resveratrol 
Recommendation:  200mg at lunch, and 200mg at bedtime

Amino Acids  (Complete Complex)
Recommendation:  4 capsules at morning, 4 capsules at evening

Iron (Gentle Iron Recommended) 
Recommendation:  25mg at bedtime

L-Carnosine
Recommendation:  500mg at morning, 500mg at lunch, and 500mg at evening

L-Carnitine
Recommendation:  500mg at lunch

PQQ (Pyrroloquinoline Quinone): 
Recommendation:  20mg at evening

Curcumin:
Recommendation:  630mg at lunch

5 HTP:  
Recommendation:  200mg before bedtime

MK-7; VItamin K-2:
Recommendation:  100 mcg at breakfast

Probiotic: 
Recommendation:  1 capsule before bedtime

Caffeine: 
Recommendation:  200mg to 400mg per day, preferably not after 3pm and not in the form of sugary drinks.  Increase dosage slowly.

DHEA (7-Keto):    
Recommendation:  100mg at morning (male) 25mg at morning (female)

Multi-Mineral Support:  
Recommendation:  4 capsules at morning, and 4 capsules at bedtime

High Quality Multi-Vitamin Support:  
Recommendation:  1 dosage at morning


#2

All of this is backed by a collection of clinical research.  So far, there is no "magic pill" for PD...but, maybe "magic pills" :)

If you try this for 3 months, please let me know how it went for you.  


#3

Hi, JDS,

It is great that you are still symptoms- free after 4 months ! You also say you are feeling so much better. I am so pleased for you. I do sincerely hope this will continue.

However, do you have to keep taking those supplements for the rest of your life?

Also, as we said before, many of us cannot afford to buy all those supplements, so following the protocol is not really practical for the majority of people.

Only time will tell if you have found a cure for Parkinson's. I wish you all the very best. Do keep us informed. Thank you.

Take care

 

 


#4

I would also like to thank you for making the effort with this, and I wish you well.

As for myself, there are enormous practical difficulties in meeting the whole script. Have you any idea which items are the more significant, and which are not? "Protocol Light?"

Thank you again.

 


#5

How long since you were diagnosed? It is very difficult for a Parkinson patient to achieve 8,5 hours of quality sleep . How much do these supplements cost? Do you still eat a normal diet? What did you eat and which supplements did you take before you were diagnosed? And did you exercise ? Why do you think your body needs these high dosages ?

You say it is backed by a collection of clinical research. Where can I find  any articles, publications of this?You must realize by now that I am a sceptic. If you believe it works it will probably work. I hope you are on the right path. And I still believe in miracles, but would prefer a simpler and cheaper solution to the problem, of course. Good luck, Kate


#6

Even if my PD was not going to come back after discontinuing taknig the pills, I would still take them.  I feel so young again, and my body and skin actually seem like they are reversing aging.  As long as I don't have any side effects, my goal is to keep on the protocol forever.  

 


#7

Result !!  Back of the net !!

jds 1  Parkinsons 0

I`ve said this before and I`ll say it again - jds, you`re an inspiration to us all.


#8

Hi Oldun,

There are two paths to consider.  

1) Trying the whole protocol for 3 months and see if symptoms disappear or are significantly reduced, then reduce the lesser priority supplements after three months and see if symptoms return. 

2) Start with the lesser priorty and see if any benefit is realized after three months.  If benefit is realized, then consider whether or not it might be worth adding on the lesser priority supplements to see if any further benefit could be gained.

The difficult in assigning priority is the reality that every item below is included to deal with a certain element of PD.  Where there are minor redundancies, the priority level was reduced in the below.

The Protocol 

Sleep (High Priority)
Recommendation:  Minimum of 8.5 hours of quality sleep per day.  Wake up naturally instead of with an alarm.  If your body needs more sleep, then let it sleep. 

Adequate sleep is critical for neural health.  Some of the primary functions of sleep is to detoxify the brain of toxic substances that accumulated throughout the day, eliminate free radicals, restore vital nutrients, and repair and restore damaged cells.  Because Parkinson's is a chronic neural disease, inadequate sleep would only accelerate disease progression whereas sufficient sleep would contribute to slowing down progression.  In addition, "The Protocol" is primarily based on nutrition.  Sufficient sleep enables the brain to take full advantage of the nutrition that "The Protocol" makes available.  Sleep is foundational to "The Protocol."

Research 1; Research 2


Exercise (High Priority)
Recommendation:  Minimum of 20 minutes of cardio 3 times per week (60-80% maximum heart rate).  Full body resistance training once per week, or divided into muscle groups throughout the week.

Besides all of the regular benefits and increased general wellness of exercise, Parkinson's patients benefit greatly with a disciplined exercise program.  Parkinson's threatens mobility control and balance, whereas exercise can enhance these things.  Exercise increases blood flow to the brain, which is the delivery system of all of the nutrients found in "The Protocol."  Exercises assists the body with various types of stress, which allows the body to focus on healing instead of managing stress.  Lastly, sweating is a means of your body to rid yourself of toxins.  Toxins residing in the brain is believed to be the number one cause of Parkinson's.

Research 1; Research 2; Research 3


Stress Management (High Priority)
Recommendation:  Identify consistent and predictable stress in your life and work to minimize environmental stressors and when not possible, at minimum, learn how to control your reaction to such stress in the most positive way.

Stress has shown to amplify Parkinson’s symptoms and quickly accelerate cell death.  Stress alone has been clinically shown in animals to actually create Parkinson’s disease.  Positive thinking and mitigating stressful situations are not only ideal, but critical.  When the body is fighting stress, it is not as focused on healing or repairing your cells, tissues, or body systems.  A Parkinson's patient needs to maximize the body's ability to heal, restore, and maintain cellular function.

Research 1; Research 2; Research 3; Research 4

Clinoptilolite (High Priority)
Recommendation:  Take two tablespoons at bedtime, at least one hour after any supplements or medications have been taken.  Do this on for one month and then off for one month.  Continue this cycle.

Coenzyme Q10 (High Priority)
Recommendation:  800mg at morning, 400mg at lunch, 400mg at evening, and 400mg at bedtime. (adjust slowly if it upsets stomach)

Reishi (Medium Priority)
Recommendation:  540mg at morning, 540mg at lunch, and 540mg at evening

B Vitamins (Lypo-Spheric - Fully Active) (High Priority)
Recommendation:  Take 1 packet at morning on an empty stomach.  Do not eat for 15 minutes

Glutathione (GSH) (Lypo-Spheric) (High Priority)
Recommendation:  Take 1 packet at morning on an empty stomach.  Do not eat for 15 minutes

Lipoic Acid (R-ALA) (Lypo-Spheric) (High Priority)
Recommendation:  Take 1 packet at morning on an empty stomach.  Do not eat for 15 minutes

Vitamin C (Lypo-Spheric) (Low Priority)
Recommendation:  Take 1 packet at morning on an empty stomach.  Do not eat for 15 minutes

NAC (High Priority)
Recommendation:  600mg at lunch, and 600mg at bedtime

L-Tyrosine (High Priority)
Recommendation:  500mg at lunch, 500mg at evening and 500mg at bedtime

Vitamin D3 (High Priority)
Recommendation:  5000iu at morning

Astaxanthin (Medium Priority)
Recommendation:  4mg at morning, 4mg at lunch, 4mg at evening and 4mg at bedtime

Omega 3 (High Priority)
Recommendation:  500 EPA/250 DHA, morning, noon, evening, and bedtime

Chaga (Dihydroxybenzalacetone) (Medium Priority)
Recommendation:  350mg at morning, 350mg at evening and 350mg at bedtime

Horse Chestnut (Triterpenoids) (Low Priority)
Recommendation:  350mg at lunch, and 350mg at bedtime

Green Tea (GTPs) (Low Priority)
Recommendation:  400mg at evening

Resveratrol (High Priority)
Recommendation:  200mg at lunch, and 200mg at bedtime

Amino Acids  (Complete Complex) (Low Priority)
Recommendation:  4 capsules at morning, 4 capsules at evening

Iron (Gentle Iron Recommended) (Low Priority)
Recommendation:  25mg at bedtime

L-Carnosine (High Priority)
Recommendation:  500mg at morning, 500mg at lunch, and 500mg at evening

L-Carnitine (High Priority)
Recommendation:  500mg at lunch

PQQ (Pyrroloquinoline Quinone): (High Priority)
Recommendation:  20mg at evening

Curcumin: (High Priority)
Recommendation:  630mg at lunch

5 HTP: (Low Priority - Mostly for mood)
Recommendation:  200mg before bedtime

MK-7; VItamin K-2: (Low Priority)
Recommendation:  100 mcg at breakfast

Probiotic: (Low Priority)
Recommendation:  1 capsule before bedtime

Caffeine: (High Priority)
Recommendation:  200mg to 400mg per day, preferably not after 3pm and not in the form of sugary drinks.  Increase dosage slowly.

DHEA (7-Keto): (Priority Level Dependent Upon Personal Lab Data)  
Recommendation:  100mg at morning (male) 25mg at morning (female)

Multi-Mineral Support: (Medium Priority)
Recommendation:  4 capsules at morning, and 4 capsules at bedtime

High Quality Multi-Vitamin Support: (Medium Priority)
Recommendation:  1 dosage at morning


#9

I will edit the above post to include all research and a brief reasoning for each supplement....stay tuned...the above post will contain more info soon.


#10

Nevermind...it only gives you three minutes to edit the post... I will make a new post when it is ready.


#11

Hi Kate,

I was diagnosed officially in March 2014.  

My symptoms included:
Uneven walking and gait
Balance issues
Tremor/pill rolling on my left hand about every 15 minutes for about 20 seconds.
Minor depression
Chronic fatigue
Significant loss of smell
Poor sleep
Lack of dreaming
ED issues and loss of sex drive
Lack of focus and interest
Flat emotions
Occasional difficulty in swalowing 

I was dealing with these symptoms to various degrees for at least 8 years.  I am currently 36.

My nutrition was fair to poor prior to diagnosis.  I took the occasional multvitamin and mineral.

I still eat the same diet, perhaps more fair than poor now.

I started to exercise again in Oct. 2013 prior to my diagnosis as I was trying to deal with my chronic fatigue and other issues.

I live in CR.  I know how much the cost of the supplements are for me to import, but the U.S. has much better opportunity on pricing.  But, I realize I am talking to those in the UK, so you might be in the same boat as me.  I use both iHerb and Vitacost.  They ship for only $4 to me internationally (if order is under $80 and 4 pounds), and their pricing is fair.  If you order enough, they put you in a VIP program and then you get 5% to 14% off with orders.  That might be a good place to start to but together a package and budget.  If one is the U.S., and shipping internationally is not needed, then I have been told that eVitamins.com is even better on pricing.

I currently pay about $400 to $500 per month.  I will be paying less soon because I am working with Dr.s now to introduce many of these products to residents of Costa Rica and I will be able to get these products at wholesale and could then use that pricing also for my own personal use.

Prior to being on this protocol, my sleep was very poor as well, but I did not realize how poor it was till I began the protocol.  One week into the protocol, good sleep and having dreams again was the first thing that occured.

CoQ10 is one of the products that are a high dosage in the protocol.  The reasoning is that PD patients have a mitochondrial disfuntion in their cells.  CoQ10 saturation is necessary to support the mitochondria (energy power houses of the cells.  PQQ and Vit B's also support this process.  Without functional mitochondria, your cells stop functioning correctly and/or die...thus not produce dopamine.

Most other dosages in the protocol are standard.  However, the dosages outlined are based on the clincial studies and are not of my own opinion.

I will post the research in a moment.

It is good to be a skeptic.  I am naturally a skeptic as well.  I am data driven.  I make decisions based on evidence and data.  This protocol is a reflection of that mentality.

I would love to be optimistic that PD will be solved by a daily pill someday, but I do not expect it.  A vaccine might be possible, but not after diagnosis.

Here is the reason.

By the time symptoms show, there is already so much cellular damage and necessary cellular processes affected.

In addition, the root cause of PD is both related to aging causes and envirnomental toxins.

To fix any process, whether it be cellular or manufacturing, it is better to fix the process on the front end.

The primary fix needed for PD is to remove toxins and free radicals.  That will stop the cause, but secondary damage is already in play and would continue to allow PD to progress.  Those secondary causes are, neural swelling, mitachondrial disfunction, and dopamine defficiency.

Every item in the protocol targets the above issues.  This is why it works.

This is why there is no "cure" yet, because all issues need to be attacked in parallel.  So, they focus on solutions at the back end, which is dopamine production.  That is symply a symptom, and not a cause.

No one does attempts to address all of the primary and secondary root causes, because it seems to overwhelming to them, or the cost is prohibative. 

But, I believe the cure is already there (based on research and myself as a case study), but only to the extent that dopamine producing cells are not already dead, but symply inactive.  

Alzheimer's protocol is about 90% similar to PD.

I hope that helps.  I am sorry for the lenghth of all of that. smiley
 


#12

Ok...it takes too long to transfer the research into a respectable format on the forum.

If one is so inclined, visit my personal profile for this forum.  I list my personal website.  Visit the "protocol" section.  ALL of the research I have accumulated is there with the links to the studies behind them.

If anyone has more research to add, PLEASE let me know.  I will add it for the benefit of others.

I would have preferred not to direct to the website because I also list links on how to purchase products and sometimes those that are skeptical assume I am trying to sell something or gain a commission.  That is a respectable and valid concern.  I am also biased to Now Foods, but Life Extenction, Dr.'s Best, Source Naturals, and Natural Factors all produce their products in a GMP rated facility.  Just make sure you buy products created using and rated as "Good Manufacturing Proceses" (GMP).

Keep in mind, there are online stores that sell the same products for much less than iHerb.  I only use them because I import to Costa Rica and they ship to me for less.  There are other online retailers out there.

I say all of that, and offer a plethera of options so that I cannot be accused of promoting something that is self-serving.

Kate...I hope that helps.  At minimum, that page could serve as a launch point to further your own research.

This is the important thing to keep in mind.  

Nutrition is a clasic example of synergestic benefits.

The PD patient might receive a 5% benefit from using PQQ, or 5% benefit from glutathione, but put them together and you might receive a 20% benefit.  The whole is greater than the sum of the parts.

The reasoning is that you can not expect fantastic results if you help the mitochondria of your cells and not help the neural swelling.  You need to help both, or your cell processes still have a productivity bottleneck.

You need to free up all cell processes by removing all issues commonly found in PD...again, this also illustrates why a "one pill solution" cure is still lacking in mainstream science.

That is all said to say that if one only takes 20% of the protocol, you might be just wasting money.  It might be better to try it all for 3 months, and then determine how much benefit there is to it...and then, perhaps reduce the supplements to see if one can obtain the same benefit or close to it.

I hope that is helpful to those reading.  I am not an authority on anything.  I am just a regular guys obsessed with data and research, and understanding how PD works...and trying to apply it.
 


#13

Sounds really good if only they could bring a pill out that covers all this protocol would be brillant

with regards to excercise you are so right it promotes feel good factors endorphins if you can and you are mobile enougth then excercise should be classed as a very important part of the treatment for PD be it a walk or a swim or a jog/cross trainer anything is better than nothing we can all sit in a chair and think of what might have been but we need to live in the present and deal with the cards we have been dealt ............good luck all and great informative post......................Paul


#14

Hi, What exactly do you mean ' a packet of eg Glutathion - is that a tablet ? Also do you take probiotics? There is a lot of evidence recently that PD is connected to the gut issue. Any thoughts? 


#15

How do I get into your personal profile pls? I m interested in hearing where you get the supplements from. We live in Australia and I use I herb but I m interested in getting them cheaper from anywhere! Thanks 


#16

Hi britabroad,

You can read our article on the research around gut bacteria and Parkinson's here. If you have any questions please do let us know and we can pass them on to our research team. 

And this forum thread is from a couple of years ago so the original posters might not be around, and we'd also recommend speaking to your doctor or nurse before using new supplements. We have a Helpline which you can email at hello@parkinsons.org.uk if you'd like any information or advice about medication, supplements and symptoms.

I hope this is helpful!

Best wishes,

Joanne - Digital team. 

 


#17

Interesting thread. How are you now Jon? Disease still cured?

You seem to have gone very quiet...are you still on this forum?

And I know this is going to sound like I'm trolling you, sorry, but here goes...

You tell us you were dx in early 2014 then in October 2014 you're declaring yourself more or less miraculously cured by a long list of food supplements you researched and concocted.

Wow! Just 6 months to find a cure!  What have those lazy good-for-nothing doctors and scientists been doing all these years...?

And then I see your profile links to a web site where a one-pill-cures-all remedy is for sale at $250 a bottle.

Are you a fake?

Am I being rude? Yes. Because I really want a cure like so many others here and I get offended when someone tries to dupe us.

I'd be delighted if you told me I was wrong (and rude) and yes you're still cured. Might even reach for my wallet!

Marc


#18

There has been a lot of research done with food supplemments, vitamins, etc etc , often with only small groups an inconclusive or vague. And some are not recommended, like Co-enzyme Q10, because there has not been enough research done into the effect of the large doses necessary .

jds' Parkinson diagnosis, based on his symptoms would have been subject to revision after 6 months or so, it would not been an open and shut case in the early stages. 


#19

@Kate yes you are right regarding Co-enzyme Q10: