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lioness818

Potential Alternative Treatments for Parkinson's Disease

2 posts in this topic

I am a pwp diagnosed 3 years ago at the age of 37.  At first I accepted the diagnosis and figured no big deal not realizing that PD is a lot more than tremors.  Now that my quality of life has been greatly impacted, I've decided it's not enough to take pills to alleviate symptoms but I need to take a more aggressive approach to finding ways to heal and repair my body.  I've done a bit of research but I need some feedback from my fellow pwp.  If any of you that have tried alternative/natural treatment options would please take a few minutes to answer a 10-question survey regarding these methods, it would be a great help.

 

 https://www.surveymonkey.com/s/SCGNGLR

 

I would be more than happy to share the results.  Also feel free to share the survey link.

 

Thanks in advance and be well.

 

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Lioness...My name is Jon.  I was diagnosed at 35, March 13th, 2014.  

Basic Symptoms -> Fatigue (especially afternoon), left index tremor 15 seconds every 20 minutes, apathy and severe flat emotions, unrestful sleep, diminished smell, no dreams, left side less arm swing, left foot some drag, balance issues, dizziness, some lack of focus and motivation, anxiety.  Balance issues, dizziness, constant tremor appeared November 2014.  My symptoms are light and manageable, but progressing.  In looking back, my smell may have started to diminish significantly 4-6 years ago.  I had some difficult in swallowing 3-4 years ago with some personality changes.  As of the last 1-2 years my severe flat emotions began to impact family relationships.  In October 2013 the tremor showed up.  In February 2014 I saw my first Neurologist.

Theoretical Root Cause -> I was on antibiotics for basically a year in 2001/2002.  I believe my digestive system became so unbalanced that it caused my GERD and throat ulcer, as well as mitochondria damage in surrounding cells in the lower digestive system.  The mitochondria damage spread to my smell frontal region of my brain, and then progressed to my substantia nigra causing Parkinsons.  This is hypothetical, and only based on research I have read on correlations with familial Parkinson's studies.

Background ->  I am a Six Sigma/Lean process improvement engineer who focused on healthcare/patient driven processes at a U.S. top 10 world class hospital that employed 9,500 people at the hospital, and 27,000 people in the system.  I also created and head an international Internet ministry dedicated to creating free teachings that has a regular audience of about 150,000.  I currently live in Costa Rica and I have lived there for nearly 3 years.  Because of Parkinson's, I have had to learn, or relearn, the value of nutrition.  In talking with the top U.S. trained doctors in Costa Rica, I realized that GNC has a monopoly here in the area of nutrition and that they charge nearly 300% more here than in the U.S. with limited product diversity and availability.  I am currently partnering with the CR Ministry of Health and top doctors in CR to create GNC's first (and last) competition in this country using Six Sigma/Lean methodology.  We will offer GMP certified products at 50-80% of GNC costs.  I am now biased to nutrition (disclaimer), but recognize the value of pharma, and my approach to PD has also been based on Six Sigma methodology.

My PD Journey ->  After my "L-DOPA" test I discontinued Sinemet.  I began taking Seleguline (5mg x 2)(MOA-B inhibitor) beginning March 2014.  I began collecting all research on any substance or compound that showed positve results in 1) in vitro models, 2) insect or animal studies and/or 3) human studies, combined with the most up-to-date information available on the complexities of what actually causes PD.  I quickly learned that the standard approach to PD management was to elevate dopamine.  To me, as a six sigma engineer, this was not acceptable as a primary solution.  Any response that did not address the root cause is not a solution.  It is equivalent to a patient with a gun shot wound bleeding out, and the solution is to keep pumping in more blood, all while the patient is continued to be receiving more gun shot wounds.  I wanted to stop the PD "gun."  This is especially the case since, in theory, I have decades of life span left.

The PD Problem Statement
I learned that PD is not a dopamine problem, but a cellular mitochondria problem.  This causes at least two main problems.  

1) The mitochondria no longer has sufficient means to produce cellular energy through the "Complex I, II, III, and IV" ATP process.  This in turn causes affected neurons to go dormant (not produce dopamine) to conserve energy.  Eventually, after some time, the mitochondria turns on a process that causes cellular catabolism and death, thus taking a dormant cell not producing dopamine into a state in which dopamine production will never be recovered.

2)  The second problem is that the mitochondria either overproduce α-synuclein, misfold the protein, and/or can no longer break that protein down, thus causing α-synuclein fibrosis and protein clumping.  This affects neurotransmitter communication, which can cause dementia when a certain threshold is reached.  This also interrupts the dopamine pathways in an already dopamine starved environment, thus enhancing PD symptoms.  In addition, this activates panic by surrounding neurons, and the microglia is activated as part of the body's immune system to try to cope and remove the problem.  The immune system assumes properly functioning mitochondria to assist in this process, but the mitochondria are not equipped to corporate.  This causes the defective mitochondria to entertain a process that does not work, and the mitochondria attempt to work harder and spin their wheels, but accomplish nothing.  This takes resources from the mitochondria and further diminishes the ability to create adequate energy, fueling problem number 1.  Now that the mitochondria are in activity hyper mode, but really accomplishing nothing, the mitochondria, as a waste product, create a massive surplus of free radicals.  In an crisis management attempt to neutralize these free radicals, the surrounding cells attempt to create glutathione, R-ALA, CoQ10, and other primary antioxidants, plus deploy ingested antioxidants (Vit-C, Vit-D, etc).  The amount of free radicals vs available antioxidants is a war of numbers, and the antioxidants lose, presenting a very antioxidant poor environment.  The free radicals, in combination with the body's immune response, creates neural swelling.  The oxidation and neural swelling causes additional cellular stress, also contributing to additional cell dormancy, and cellular death, thus, less dopamine.

Of course, the problem is much more complicated than that, but there it is, the best I understand it, in a nutshell.

My Response (an attempt to attack the core of PD)

Sleep - Goal is to sleep at least 8 hours, and more if needed (promote nutrition utilization, mitigate cellular stress, support brain detoxing)

Exercise - 30 min 5x per week. (increase dopamine production, increase neural nutrition transmission, toxin elimination)

Stress Mitigation - Recognize and eliminate stress. (minimize stress response, reserve resources for neural support)

Clinoptilolite - 1TBS Bedtime / 1 week on 1 week off (toxin management)

Coenzyme Q10 - 2,000mg (oxidation, mitochondria ATP deficiencies) 

Reishi - 1620mg (oxidation, neural swelling)

B Vitamins Complex (Fully Active)(LypoSomal) - 1 Packet (mitochondria ATP deficiencies)

 

NAC - 2,400mg - (oxidation, neural swelling) 

L-Tyrosine - 1,500mg (dopamine underproduction)

Vitamin D3 - 5,000iu (oxidation, neural swelling)

Astaxanthin - 16mg (oxidation, neural swelling)

Omega 3 - 2000/1000 Omega/DHA (neuroprotectant)

Chaga (Dihydroxybenzalacetone) - 1050mg (oxidation, neural swelling)

Horse Chestnut (Triterpenoids) - 700mg (oxidation, neural swelling, neuroprotectant)

Green Tea (GTPs) - 400mg (oxidation, neuroprotectant)

Glutathione (GSH) LypoSomal - 1 Packet (oxidation - NOTE: Does NOT cross BBB.  Idea is to oversupply GSH elsewhere to allow better neuro GSH synthesis.)

Resveratrol  - 400mg  700mg (oxidation, neural swelling, neuroprotectant)

Amino Acids Complex - (cellular disfunction, dopamine deficiency)

L-Carnosine - 1,500mg (neuroprotectant)

R - Lipoic Acid (BioActive /LypoSomal) 1 Packet - (oxidation, neural swelling)

PQQ (Pyrroloquinoline Quinone) 30mg - (mitochondria disfunction, oxidation)

Curcumin - 630mg - (oxidation, neural swelling, neuroprotectant)

5 HTP - 200mg - (depression)

MK-7; VItamin K-2: 100mcg - (mitochondria disfunction)

Probiotic Complex - Standard dosage - (typical PD digestive issues, nutrition absorption issues)   

Caffeine (supplement) - 400mg (neuroprotectant, dopamine deficiency)

DHEA (7-Keto) - 100mg (neural inflammation)

Vitamin C (Fully Active)(LypoSpheric) - 2 Packets - (neural swelling, oxidation)

Multi-Mineral Support and Multi-Vitamin Support - (Cellular Disfunction)



Results:
I discontinued usage of Seleguline (MOA-B inhibitor) on June 22, 2014.  I was symptom free until November 11, 2014.

Conclusion:
The nutrition helped restore some of my dormant cells to functioning cells, which enhanced dopamine production, thus eliminating symptoms without the artificial means of the MOA-B inhibitor.  By default, this also means it must slow down PD, as it is reducing (but not eliminating) the stressors that cause cell death.

Why the return of symptoms?
The symptoms returned during a time of multiple cases of severe personal stress.  When the brain is stressed, it requires more energy.  Despite the nutritional mitochondria support, it was not enough.  The energy crisis returned and it returned with a vengeance.  New symptoms (balance/dizziness/tremor severity) all appeared.

What was the response?
I resumed Seleguline (November 2014) and attempted to understand the problem better, and what could be done to solve for it.  Symptoms retreated 80%.

Results of further research.
I discovered that since I cannot fully repair the defective mitochondria and the deficient ATP process creating a cellular energy crisis, that another solution must be found.

Ketones are a form of cellular energy that only brain cells can use as an alternate to ATP glucose centric energy.  The pharma world knows this, and drugs exist to deliver ketones, and studies show that ketones help PD, but they are expensive.  An alternate solution is medium chain triglycerides (MCT oil).  This is derrived from coconut oil, which is 63% MCT oil.  When ingested, the MCT oil goes straight to the liver and is turned into ketone energy that the brain can use.  MCT oil made a huge difference.  Missed or late dosages are correlated with an increase in PD symptoms.   MCT oil filled the 20% gap that Seleguline could not.

The following was added to the nutritional protocol:

Melatonin - 5mg (neuroprotectant, oxidation, sleep deficiencies)

Medium Chain Triglycerides (MCT) - 6 TBS Daily - (ATP energy deficiency)

Ginger - two caps daily - (neural swelling)

Nicotine (supplement) - 8-10mg daily (neuroprotectant)

Safety
A labs analysis for kidney, liver, and cardio stress is completed every 3 months.



Latest Change (exciting)
A compound was discovered that restores mitochondria function back to normal in PD patients (in vitro models / mouse models) called UDCA.  As of December 16th, 2014 I have discontinued the nutritional protocol (minus caffeine and nicotine) and Seleguline to fully bring back my PD sytmpoms.  Once my MOA-B functioning is restored (5-7 days) I plan to test UDCA and determine its value or non-value in PD.  A whole thread dediated to this subject and upcoming test can be found here (LINK).



I hope that some of that was useful to you, but in seeing your approach so far, I imagine this is the sort of information you are seeking.


Jon

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