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Old 03-31-2020, 07:51 AM #1
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Default WE ALREADY KNOW ENOUGH: This is the key to getting out of Parkinson's prison.

WE ALREADY KNOW ENOUGH: This is the key to getting out of Parkinson's prison and the truth that we are reluctant to accept.

A call to change the way we view the disease and the treatments.

I know this from my own experience. And I've seen it in most of them over the last 10 or 15 years, which is when I've been most awake and attentive to these issues.

The most powerful treatment for Parkinson's is a change in the way we see everything: the disease, the treatments and the world around us (from large companies and health ministries to associations and the family itself).

If we do not see the disease in another way, we remain prisoners of the Parkinson's "labyrinth". Negative beliefs depress and paralyse us more than the disease. Two examples:

1. For 70 years it was believed that an adult could not create new neurons. Since 1998 it has been known that he can;

2. We have grown up with the idea and the fear that if we were born with certain genes, there is no solution: today we know that Epigenetics rules, that genes do not have the last word (vitamins like B12 and D or minerals like magnesium, activate or silence the genes, correct them).


I'm going to repeat several of the ESSENTIAL things I've learned over the years (1994-2020):

1. Vitamin B6 is as important in Parkinson's as levodopa. and since 1975, when carbidopa is used, there are usually no problems with up to 25 mg a day (see the levodopa package insert).

2. If homocysteine is not controlled with vitamin B9 there is nothing to be done. Parkinson's will remain as we know it today.

3. The possibility that Parkinson's disease is caused or facilitated by multiple deficiencies (dopamine is one of them) opens up a new world.

4. Current Medicine has entered a dead end (possibly, it is just my opinion). dealing with parkinson's only with levodopa-carbidopa and a few other medications (without vitamins B1, B2, B3, B6, B9, B12, C, D, etc), is like going into a boxing ring to fight a boxer and having one hand tied behind your back (maybe both).

5. Until something better than levodopa is discovered, we should make the most of it: minimum necessary dose, enhance its effectiveness with vitamins c and b3, correct its harmful effects with vitamin c, green tea, glutathione, milk thistle and vitamin b9.

6. Even if nothing of this is true, it is not harmful. And the mere fact of having hope, changes the prognosis of the disease in a decisive way. But it turns out that not only are there thousands of studies on the subject, but many more keep coming out. With only 100 studies from the last 3-5 years we could change everything.

7. We already know enough to significantly improve the lives of the sick. But we still wait for a miracle results study, which seems to me as impossible as finding a unicorn. There is no pill or surgery capable of changing by itself the complexity of the damage that Parkinson's produces year after year (glutathione deficiency or excess homocysteine would be catastrophic if they were the only problem).

8. The house starts to be built on the foundation, not on the roof. If we don't control homocysteine with vitamin B9 or the oxidation of levodopa with vitamin c, there is little point in tango or boxing (very good things, but they form the roof, not the foundation).

I invite you to read what is written on the wall (at least the last 30 publications). But reading them over and over again will pierce the thick layer of prejudice and error that we all have about Parkinson's (in my case too, of course. I have to fight every day to get rid of them). If we don't look at Parkinson's in another way, there's nothing to be done.

No single supplement is strong enough against Parkinson's. The disease is a giant that can only be defeated by an army of "dwarves".

And I invite you to discuss any changes with your doctor and pharmacist (caution).

Remember, courage to be informed and prudence to make changes.
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Old 03-31-2020, 07:56 AM #2
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Default WE ALREADY KNOW ENOUGH (II). What would I do if I had Parkinson's?

WE ALREADY KNOW ENOUGH (II).
What would I do if I had Parkinson's? As far as I know today, 3/31/2020.

This is a delicate question to ask for someone who does not have the disease. I asked myself that question many times while caring for my father (I write this again because there are many new readers, who will wonder how I dare to ask that question and propose an answer). And I have asked it again many more times since then. The truth is that in my father's lifetime we barely scratched the surface of Parkinson's. I will try to answer it honestly.

For the first time in the modern history of Parkinson's, thanks to magnificent studies, the Internet and the recommendations of some specialists (Ahlskog, Lombard, Marjama Lyons, Siniscalchi...), we can decisively influence the course of Parkinson's. We can change the Parkinson's labyrinth. To stop the degenerative waterfall with our own hands, which makes it a chronicle.

The key is not whether I will take Immunocal, Mucuna, Atremorine, Marian thistle or the Omega 3, but that all this must be done for the right reason in order to integrate it into a strategy to deprive Parkinson's of its food sources, to starve it:

1.- If Parkinson's feeds on OXIDATION (Jenner, Olanow) itself and more so on levodopa, that's why we take vitamin C, green tea, grape resveratrol, etc.

3 .- If Parkinson's feeds on a high level of HOMOCYSTEIN, so we look for foods rich in folate, folic acid or vitamin B9 (Ahlskog, Siniscalchi, Marjama Lyons), along with the richest natural supplement, brewer's yeast, and some mild supplement of 400 mcg or more (as taken by pregnant women to prevent damage to the developing child).

4 .- If Parkinson's is a lack of DOPAMINE in certain areas of the brain, so we try to give you enough vitamin B6 but not interfere with levodopa (up to 25 mg according to some neurologists and the prospects of levodopa, thanks to the carbidopa that carries levodopa since 1975). Vitamin B6 (the pyridoxal phosphate) is essential for converting levodopa to dopamine within the brain. Always consult your neurologist, because there are people who are very sensitive to vitamin B6. Sources: pistachios, brewer's yeast, vitamin and mineral supplements, etc.

5 .- If Parkinson's is fed by the weakness of the LIVER (already the traditional Chinese medicine related Parkinson's with a disorder of the liver more than 1000 years ago and there is even an encephalopathy caused by its malfunctioning), so we use the milk thistle (Lombard, Marjama Lyons). Also vitamin C, artichokes or glutathione.

6 .- If Parkinson's is nourished by SEDENTARISM and lack of physical exercise, we will give vitamin C (carnitine) and spinach (coenzyme Q10) to have energy and desire to spend it, while we take walks, do some exercise at home, practice the usual sports or dance tango, boxing well advised, etc. Always adapted to your own circumstances by the specialist.

And so a long etcetera: Vitamin D from the Sun and from supplements, omega 3 EPA and DHA pearls for Parkinson's in general and for depression in particular, etc.

As long as this is lacking in diets and treatments for Parkinson's, something very important will be missing.

When we begin to see Parkinson's in this way, we understand why it progresses as it does. And the ways to slow it down or stop it from progressing, depriving it of the environment it likes to keep growing. I think it's better understood that way. For explanations with scientific language we already have very good books, guides and studies.

Don't forget to always consult your doctor and pharmacist.
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Old 03-31-2020, 10:19 PM #3
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Interesting on the Homocystein and I don't have P.D. but my integrative MD began to test my Homocystein levels probably close to 10 yrs ago and the levels were elevated, so I have been taking supplements to keep it in the lower end of range. Good Info....

Sad allopathic doctors don't do other testings,,,,
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Old 04-01-2020, 06:02 PM #4
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My personal experience of PD is confined to that of an uncle of mine in NZ who lived with it for many years.

My understanding of it, based on reading the professional literature, is that it is a very complex condition which can have many contributing factors.

I would be surprised if it would ever have a single "silver bullet" treatment (taking supplements or anything else).
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Old 04-02-2020, 02:07 AM #5
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I am completely convinced that only a treatment that combines drugs and vitamins (and other nutrients) will be able to tackle Parkinson's. HOMOCYSTEINE, GLUTATHIONE and VITAMIN B6 seem to me to be some of the "pillars" of that future protocol. Of course, no "magic bullet", as prestigious neurologists have already stated, has dared to step forward and advise what is still not accepted in the day-to-day treatment. It has already been proven with levodopa along with coenzyme Q10 (ubiquinol) and with vitamin C in advanced stages.

The question of why they are not applied in daily clinical practice would lead us to address issues that are too controversial. I am content with trying to improve the daily lives of patients and their families, so that they do not have to go through a daily hell like my father and my family did.

After waiting (with total confidence), not for a cure but for an important improvement in the quality of life of the patients - and their families - we realized that it was going to take too long and we started looking. And since 1994, 26 years have passed without any significant developments.

Three issues alarmed me:

1. Why was NOTHING done against the very dangerous and neurotoxic HOMOCYSTEINE, despite being scientifically proven that levodopa raises it and that a vitamin B9 supplement allows to control it (and more if used with B6 and B12)?

2. If we know that GLUTATHIONE is reduced by almost 50% in the immune system of Parkinson's patients - and that it is lost up to 98% and that no trace of glutathione was found in the autopsies -, how is it that substances that elevate glutathione such as vitamin C, alpha-lipoic acid, milk thistle or a precursor such as NAC are not administered?

3. Why after Fahn's promising study in 1992 with 3 grams a day of VITAMIN C and 3200 IU of vitamin E did no one continue on that path? No further study has been conducted. For example, with doses spread throughout the day (every 4-5 hours) and the combination of normal vitamin C with the liposomal form. This is just an idea.

And these three examples still seem inexplicable to me from any point of view you can imagine.

I don't care if the ultimate treatment is levodopa with something else, a new drug, a cocktail of vitamins and other nutrients accompanying levodopa-carbidopa or it can be patented or not. What I want is for all of that colossal, resource-guzzling machinery to work NOW. If it doesn't, it's failing. And it has to be said.

And I continue to argue that we know enough to make life much better for the sick and their families. Thanks to the studies and recommendations of great and courageous scientists.
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Old 04-02-2020, 08:13 PM #6
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I am curious about your views on the role of misfolded a-synuclein in the pathology of PD.

There is considerable evidence that this is significant; a PubMed search (Parkinson's Disease synuclein) returns more than 9000 papers.

There does not seem to be any reported evidence, also from PubMed, of any interactions between synuclein and the low molecular weight compounds (homocysteine, glutathione, Vitamin B6, Vitamin E and Vitamin C) that you mentioned.
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Old 04-03-2020, 10:40 AM #7
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Quote:
Originally Posted by kiwi33 View Post
I am curious about your views on the role of misfolded a-synuclein in the pathology of PD.

There is considerable evidence that this is significant; a PubMed search (Parkinson's Disease synuclein) returns more than 9000 papers.

There does not seem to be any reported evidence, also from PubMed, of any interactions between synuclein and the low molecular weight compounds (homocysteine, glutathione, Vitamin B6, Vitamin E and Vitamin C) that you mentioned.
I wasn't aware of the enormous amount of studies you point out about synuclein. As many scientists sense and are investigating, this is one of the key points of Parkinson's. But no less so than the dysfunction of the mitochondria. And they are possibly related (internal and external toxins: pesticides, homocysteine, cortisol?).

I realized a few years ago that sometimes when studies don't appear in search engines like Pubmed (perhaps because there are few searches in that direction or because of the algorithms), books come to help us in those gaps.

Magnesium in Parkinson’s disease: an update in clinical and basic aspects - Magnesium in the Central Nervous System - NCBI Bookshelf

In one of them I found Oyanagi's 2010 study with magnesium and MPTP in mice. It was impossible for the group that received the highest dose of magnesium to provoke the experimental parkinsonism with MPTP. And I kept looking and found that in 2002, Golts had published a study on the ability of magnesium to inhibit alpha-synuclein aberration, both spontaneous and iron.

Later, something similar happened to me with green tea and its main polyphenol, EGCG. Xu's 2016 study was the only one I knew of.

Magnesium and green tea. But in recent years, many studies have come out that shed light on the whole world of Parkinson's: also vitamin C, astaxanthin, glutathione, vitamin K, vitamin B12, etc.

Possibly the same cellular "environment" that produces neuronal death, is the one that damages the mitocondria and produces the "madness" or aberration of alpha-synuclein. Oxidation, inflammation, elevated homocysteine? All together?

Green tea, magnesium or vitamin C act on all the possible mechanisms that produce degeneration in Parkinson's: oxidation, inflammation, homocysteine, alpha-synuclein, etc.

And "curiously" they all prevent or reduce the risk of Parkinson's and delay or stop the disease from getting worse.


1) Magnesium:

* Golts (2002). Magnesium inhibits spontaneous and iron-induced aggregation of alpha-synuclein. J Biol Chem.


2) Green Tea (EGCG polyphenol) -and also protects from damage produced by rotenone, paraquat...-.

Lorenzen (2014). How Epigallocatechin Gallate Can Inhibit α-Synuclein Oligomer Toxicity in Vitro. J Biol Chem

* Xu (2016). Epigallocatechin Gallate (EGCG) Inhibits Alpha-Synuclein Aggregation: A Potential Agent for Parkinson's Disease. Neurochem Res.

* Roy (2017). Suppression, disaggregation, and modulation of γ-Synuclein fibrillation pathway by green tea polyphenol EGCG. Protein Sci.

Yang (2017). EGCG-mediated Protection of the Membrane Disruption and Cytotoxicity Caused by the 'Active Oligomer' of α-Synuclein. Nature.

Singh (2011). Green tea catechin, epigallocatechin-3-gallate (EGCG): mechanisms, perspectives and clinical applications. Biochem. Pharmacol.

* Bieschke (2010). EGCG remodels mature α-synuclein and amyloid-β fibrils and reduces cellular toxicity. Proc. Natl. Acad. Sci. USA.


3) Glutathione.

* Seung (2003). Oxidized glutathione stimulated the amyloid formation of α-synuclein. FEBS Letters.

Jewett (2018). Glutathione S-Transferase Alpha 4 Prevents Dopamine Neurodegeneration in a Rat Alpha-Synuclein Model of Parkinson's Disease.
Front. Neurol

Trinh (2008). Induction of the Phase II Detoxification Pathway Suppresses Neuron Loss in Drosophila Models of Parkinson's Disease. J Neurosci.

* Koo (2013). α-Synuclein-mediated defense against oxidative stress via modulation of glutathione peroxidase. Biochim Biophys Acta.


4) Vitamin B6 and B2.

Pyridoxine is key in the sense that glutathione and magnesium are, since it stimulates glutathione synthesis and improves magnesium assimilation (somewhere I read, but I have not been able to rescue the quote, that brings magnesium to the interior of the neuron).

Wei (2020). Pyridoxine induces glutathione synthesis via PKM2-mediated Nrf2 transactivation and confers neuroprotection. Nature.

Pouteau (2018). Superiority of magnesium and vitamin B6 over magnesium alone on severe stress in healthy adults with low magnesemia: A randomized, single-blind clinical trial. PLoS One.

Abraham (1981). Effect of vitamin B-6 on plasma and red blood cell magnesium levels in premenopausal women. Ann Clin Lab Sci.

Schuchardt (2017). Intestinal Absorption and Factors Influencing Bioavailability of Magnesium–An Update. Curr Nutr Food Sci.


Riboflavin. And since vitamin B2 activates B6, I am not surprised by the results of studies on how riboflavin prevents Parkinson's by 50% (McCormick 1988) and improves motor skills by 44-71% (Coimbra 2003).


5) Vitamin B12.

Jia (2019). Vitamin B12 inhibits α-synuclein fibrillogenesis and protects against amyloid-induced cytotoxicity. Food and Function.

6) Vitamin C.

Khan (2012). Effect of L-ascorbic Acid on the climbing ability and protein levels in the brain of Drosophila model of Parkinson's disease. Int J Neurosci.

Wang (2010). Redox reactions of the α-synuclein-Cu(2+) complex and their effects on neuronal cell viability. Biochemistry.


7) Possible link between Homocysteine and alpha-synuclein.

Enomoto (2019). Alpha-synuclein phosphorylation by homocysteine. Alzheimer's and Dementia

https://aanddjournal.net/article/S15...19)30853-2/pdf


8) Vitamin K:

Silva (2013). Vitamins K interact with N-terminus α-synuclein and modulate the protein fibrillization in vitro. Exploring the interaction between quinones and α-synuclein. Neurochem Int.

9) Astaxanthin:

Wang (2018). Reversal of homocysteine-induced neurotoxicity in rat hippocampal neurons by astaxanthin: evidences for mitochondrial dysfunction and signaling crosstalk. Cell Death Discov.


10) Baicalein (fungal flavonoid):

Zhu (2004). The flavonoid baicalein inhibits fibrillation of a-synuclein and disaggregates existing fibrils. J. Biol. Chem.


Numerous substances that function as antioxidants, anti-inflammatories, protectives of alpha-synuclein integrity, regulators of the neurotoxic homocysteine, are known to prevent or reduce the risk of Parkinson's, have anti-Parkinsonian epigenetic activity, improve motor and non-motor symptoms, slow down or stop the disease. Magnesium depends on B6, B6 on B2 and so on an endless chain of the fascinating mechanism of neuroprotection of the human body, which fails against the multiple degenerative factors in the disease. And it seems to me that they point to Parkinson's not only as multifactorial but also as multicarential (both obvious and subclinical deficiencies). Even if the recommended amount is consumed, as is the case with homocysteine, because the body "consumes" vitamin B9 (and B6 and B12) in an attempt to reduce its level.
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Old 04-08-2020, 04:58 PM #8
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hello parkinsons here-now :

What is the best time of day to take vitamins (B 1, B3, B6, B9) so that they won't interfere with levadopa med? I take primarily mucuna bbeginning 9AM to 6 pm..


Kind Regards,

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Old 04-12-2020, 09:50 AM #9
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Quote:
Originally Posted by moondaughter View Post
hello parkinsons here-now :

What is the best time of day to take vitamins (B 1, B3, B6, B9) so that they won't interfere with levadopa med? I take primarily mucuna bbeginning 9AM to 6 pm..


Kind Regards,

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Hello moondaughter

Sorry for the delay in answering.

My opinion comes from neurologists and from the experience of the participants of my forum, "Parkinson's Here and Now" (in Spanish). My father never dared to take any vitamins.

In many ways, we are moving into uncharted territory.

There is hardly any information. Some recommend taking them all away from the dose of synthetic or natural levodopa. Others divide them into three doses and take them with the main meals.

If you take mucuna (without carbidopa), I think you should separate the B6 from the others and take it as far as possible from the Mucuna intake and increase the dose little by little.

----

As for the interference with levodopa:

B1, no problem. Studies by Luong and Nguyen, Costantini, etc.
B2, either. Coimbra in 2003 used 30 mg three times a day for months and achieved an improvement of 44-71 %.
B3, no problem because it is recommended to improve the absorption and duration of the effect of levodopa.
B6, there are neurologists who set the limit at 25 mg. This seems to me to be the safest, as it agrees with the comment in the levodopa leaflets (since carbidopa is added, 10-25 mg is not a problem).
B9, I have not read any information about problems.
B12, either.

As for the caution with the vitamin itself:

B3 with the dose, because it could cause flushing.
B6, with caution because there are very sensitive people who perhaps with 5-10 mg already reach their maximum.
B12, because some supplements have a lot of quantity and could produce headache.

My reference is the neurologist Ahlskog, who has repeated the recommendation in successive editions of his book to control homocysteine:

25 mg of B6.
2.5 mg of B9.
2 mg or 2000 mcg of B12.

Although it is always advisable to consult a specialist, I think it could be a good choice:
- foods rich in the different B-group vitamins (nuts like pistachio or California nut);
- natural supplements like brewer's yeast;
- and some vitamin and mineral supplements with moderate amounts.

For some more potent supplements I would be very careful. There are some that include 100 mg of vitamin B6. And as they say in my country: neither one nor the other. Neither prohibit even eating pistachios (as my father was told), nor take 100 mg (much higher amounts have been used in studies for dyskinesias by neuroleptics, but to use it along with levodopa I don't know). If I had Parkinson's, I wouldn't dare. Especially not with Mucuna.

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Old 01-17-2021, 11:38 PM #10
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I've gone from 100/25 three times a day to (2) 250/25 x three times a day i get about 3 hours and then i drag my foot when i walk untill the next dose.
66 yrs old had this start 3 yrs ago . Dr just increases meds
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