Alternative Therapy that MAY act on a root cause of PD.

[sunvox]

After reading and posting on this site for over a year I realize that there is a vast difference in underlying knowledge so if my opening comments are old news my apologies.

First, people should understand that none of the medicines available for PwP today treat the underlying causes of PD. They all treat symptoms. Next people should know that many, if not most, of the "alternative therapies" and "supplements" espoused on this site also only treat symptoms. In addition to those facts, it is important for PwP to understand that increasingly scientists and researchers are coming to the conclusion that alpha-synuclein is the common pathogen that links all Parkinson's patients, and therefore any therapy that "cleans out" alpha-synuclein from the brain is a potential "cure". By "cure" I mean something that can slow or stop progression, NOT something that fixes the underlying problem. Scientists are still unsure WHY PwP produce alpha-synuclein in a way that causes trouble because everyone produces the protein, but why PD patients produce "bad" alpha-syn is unclear.

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EDIT: As I point out in my posts on my complete regimen, this is but one part of a "complimentary" therapy. I do not think EGCG alone can fix anything, but when taken as PART of a package it hopefully helps. ALSO and equally important for people with severe symptoms YOU MUST REALIZE nothing we know to date can REPAIR damage already done. What this means to me is that EGCG may only be working to SLOW progression and if that is true you will not FEEL any benefit, but personally that wouldn't stop me from taking 1 pill a day for the rest of my life just in case it is actually just SLOWING progression.

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parkinsonsnewstoday.com/201...

scienceofparkinsons.com/201...

ncbi.nlm.nih.gov/pmc/articl...

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So what's my point . . .

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My point is that any molecule that potentially helps clean out alpha-synuclein from the brains of PwP is worth examining closely because it is acting at the root cause of the illness rather than treating just the symptoms. Mannitol is one such example, but this post is about a second supplement that I find intriguing. I first wrote about this supplement several weeks ago, but as I do not have PD, but rather I have SCA1 my initial research was not focused on PD. Today I spent most of the day reading papers on "Green Tea" extract and Parkinson's and my conclusion is . . . If you have PD there are 2 supplements that have zero risk, but hold great potential so I think every person with PD should be taking mannitol and epigallocatechin gallate, but as always I will add that no one should EVER try ANYTHING based on some internet comments without first doing their own research and talking it over with their doctor.

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So, the question is why . . . and the answer is, the amount of research into this supplement is significant. For those who don't find reading science jargon exciting the short version is simply to say research in animal models, cell cultures, and computer models points to the ability of EGCG to "clean out" and minimize the impact of alpha-synuclein. Sadly because this is a "supplement" and there is no money to be made and western science generally scoffs at "supplements" there is very little research in humans, but the little that exists is positive so that's something .

michaeljfox.org/foundation/...

ncbi.nlm.nih.gov/pmc/articl...

scienceofparkinsons.com/?s=...

fegt.org/en/clinical-studie...

ncbi.nlm.nih.gov/pubmed/293...

ncbi.nlm.nih.gov/pubmed/288...

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ncbi.nlm.nih.gov/pubmed/286...

ncbi.nlm.nih.gov/pubmed/282...

ncbi.nlm.nih.gov/pubmed/273...

ncbi.nlm.nih.gov/pubmed/272...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/268...

ncbi.nlm.nih.gov/pubmed/250...

ncbi.nlm.nih.gov/pubmed/168...

ncbi.nlm.nih.gov/pubmed/286...

ncbi.nlm.nih.gov/pmc/articl...

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In conclusion I will add that the immediate response of any doctor and or researcher will be to say that this supplement does not cross the Blood Brain Barrier, BUT I will counter that by saying I find that to be illogical because the fact is Natural History studies (that means studies of actual people and their actual habits) show that people who drank Green Tea had delayed onset of Parkinson's. That could be because some amount of EGCG is making it into the brain, but the amounts may be so tiny that science can't yet detect. Regardless, the fact remains people who drank green tea saw a real benefit, and research to date shows that if a food has benefit then a supplement probably can magnify that benefit.

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onlinelibrary.wiley.com/doi...

ncbi.nlm.nih.gov/pubmed/169...

academic.oup.com/ajcn/artic...

ntp.niehs.nih.gov/ntp/htdoc...

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I will finish by saying I believe I have developed a regimen that "cures" neurological disorders for patients who are symptom free but have a genetic diagnosis and/or are young and have only minor symptoms, and by "cure" I mean an alternative therapy that delays onset long enough so that a patients life span and time without symptoms is long enough to be considered "normal". Obviously this doe not fix whatever is wrong with the patients body that is making it produce "bad' proteins, but rather it is giving the body help in fighting the negative impact of the "bad" protein.

healthunlocked.com/ataxia-u....

[Xenos]

Great post, SunVox. Thanks. Especially when one knows you don't have PD.

I am taking mannitol, and also thiamine hcl. I noticed you don't mention the latter in your list. Is there a reason ? Is it because you consider it purely aiming at symptoms ?

[sunvox in reply to Xenos]

Perhaps you read a post from earlier when I stopped taking Benfothiamine. As of now, I am taking Thiamine hcl 200 mg twice daily. Below is a current list of all that I am doing . . .

[dadcor]

Hi sunvox, can you share your daily protocol.. What are you taking actually..?

[sunvox in reply to dadcor]

Glad to:

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1) Treadmill running 4-5 times a week for 30 minutes at 85% max heart (5.7 mph and 0% incline) with a 5 minute cool down walk (3.5 mph and 7% incline).

2) A diet mostly vegetarian with little or no dairy, processed food, sugar or meat and rich in cruciferous vegetables. Lots of oatmeal, egg white omelettes, salads, broccoli, spinach, Kale, brown rice, chicken breasts, and salmon.

3) Supplements: 2 slightly rounded tsp of mannitol in 1 cup of coffee, 3 squirts of trehalose infused water per day in my nose, 500 mg of niagen twice daily, 50 mg of pterostilbene once daily, 2000 IUs of vitamin D once daily, 1 725 mg Mega Green Tea Extract (decaffeinated) from Life Extension, 200 mg Nature's Way Thiamine HCl twice daily, Nature's Bounty 1000 mcg vitamin B12 (this last one is to treat recurrent apthous stomatitis, but I list it as it is part of my routine - there is a hint of evidence it may help prevent general neurodegeneration, but just a hint)

4) yoga 3 times a week

5) meditation weekly

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I update my alternative therapy regimen whenever I make a change. Here is a link to my latest update. Although I do not have PD the concept is the same because my disease also has a protein like alpha-syn as the root cause and the same molecules that "clean out" alpha-syn work on ATXN1 (that is the bad protein in my brain) as well:

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healthunlocked.com/ataxia-u....

[Juliegrace in reply to sunvox]

Is your B12 methylcobalamin? If it is not you might want to consider changing. Even though cyanocobalamin has only a trace of cyanide, I believe the concern is that it collects in the liver (you're the ace researcher, no sarcasm intended) and for all of us who are comprised, even a little is too much, IMO.

[sunvox in reply to Juliegrace]

I am sorry I mssed this post and did not respond earlier.

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Your post is an excellent example of how the internet spreads information that only tells half the story and/or is misleading. Yes, it is true most forms of B-12 on the market today contain cyanide, but the amount of cyanide contained in B-12 is 5 to 20 times less than that consumed by most people daily in their foods. If you want to eliminate cyanide from your body you will need to stop eating a great many foods.

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Joe

[2donkeys]

Thanks so much SunVox. Lots of info there.

[sunvox]

Anyone following this post should reread the main post because I have found a great deal more information and made significant edits. Clearly I am late to the party on this topic as even the MJF Foundation has been studying this for a long time. Sadly there are still no completed and large clinical trials with results.

[Grumpy77 in reply to sunvox]

I am aware that your illness is not PD, nonetheless I'll just like to know -what are your symptoms? Does it include asymmetric tremor? Or any tremors at all?

If i get you right, to clear the brain of bad protein you are suggesting green tea correct? Green tea is EGCG?

Edit.: the 2 supplements are mannitol and green tea ?

I will have to Google mannitol. .. I need to know if I could get it without prescription.

Many thanks

[Xenos in reply to Grumpy77]

Hi Grumpy ! For mannitol you have to do two things :

- go to Clinicrowd.com and have a look (it works better with Internet Explorer)

- go to a large internet store and type mannitol. It's a sugary powder used in pastries, chewing gum etc.

- Register at Clinicrowd and begin your supplementation

[Grumpy77 in reply to Xenos]

Many thanks xenon . Thanks for the info on how to get mannitol

I wasn't really sure if mannitol is relevant to my symptoms and healing my PD since **sunvox** stated he is taking it for a another illness that is not PD. In fact he states that he doesn't have PD

That's why I was so much interested in knowing his symptoms first before I go for it. So still waiting for his reply

But many thanks anyway

[sunvox in reply to Grumpy77]

Hi G

My symptoms were: inability to stand on one foot, trouble with speaking clearly, difficulty walking down stairs, fatigue, worsening hand writing, and inability to increase strength through exercise.

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Mannitol was originally studied in Israel to help Parkinson's patients.

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You can click on these links for much more information:

healthunlocked.com/ataxia-u...

healthunlocked.com/ataxia-u...

healthunlocked.com/parkinso...

[deedee777 in reply to sunvox]

Wondering why you chose Decaffienated Mega Green Tea extract, rather than Caffienated? I thought when taking mannitol, it needed Caffiene to cross the Brain Blood Barrier?

[sunvox in reply to deedee777]

Hi D,

The link to caffeine is not scientificly well documented, but I take the pill with coffee in the morning. However based on my understanding of the research available to date I do not believe caffeine is necessary. There is a tiny bit of research I have found that says caffeine itself may be helpful for slowing neurodegeneration. It's all just an educated guess, and again I feel strongly that its not about any single element but rather the combination of therapies you choose.

Joe

[JohnPepper]

Somewhere in this long and interesting post you stress that nothing has been found to reverse the symptoms of Pd. That is not true! The study performed in the Frenchay Hospital in Bristol in 2003 showed that all six patients given the infusion of a natural substance called GDNF (Glial Derived Neurotrophic Factor) got better.

They were infused with a manufactured version of GDNF.

My question is, "Why did nobody start looking for ways to get the brain to produce more GDNF? That seems to me to be the first thing to try after such a successful result of that study.

The answer to my own question is very simple - Nobody will gain anything financially by finding a way to produce more GDNF naturally. It is a 'No Brainer'

I think that FAST WALKING produces more GDNF, otherwise why did I get so much better after I started doing the fast walking? Maybe other forms of exercise also are capable of producing more GDNF?

Come on guys, can't you see what is going on here?

[alexask in reply to JohnPepper]

Fast walking if you can. Running if you can. Exercise bike if you can. Rowing machine if you can. Boxing if you can. Dancing if you can. Anything that involves a decent amount of Cardio Vascular.

[JohnPepper]

Good advice! There is one missing factor:

If you are aiming to reduce the level of your symptoms you must do two things;

1. Do whatever exercise you choose at your highest level and maintain that level until you are unable to go any further. Then repeat that exercise every second day for two weeks. At the end of two weeks you will be able to add a little more time and then do the exercise at that new level for another two weeks. Keep going like that until you reach one hour per session.

2. Don't exceed one hour but do continue to go faster, and DON'T DO IT EVERY DAY!!!

If you want to learn more about this then look at my website - reverseparkinsons.net and contact me.

[Namitaytrev]

Hi Joe

Curious why did you switch from trehalose to mannitol in your coffee? I take trehalose so would love to know your thoughts.

Also, can you share how you prepare the trehalose nasal mist?

Thank you as always for sharing your vast research findings with us!

Nami (Texas)

[sunvox]

Hi Nami -

I am working on a science based guess that Trehalose and Mannitol act the same in the brain, but mannitol has 1.6 calories and the CliniCrowd data for Parkinson's patients seems to show efficacy with a mere 10g or so per day, but I'm hedging my bets by continuing to take Trehalose in nasal spray form.

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For the spray I boil a water/Trehalose mixture (4:1) let it cool and put it in a plastic spray bottle. I throw it out every 2 weeks or so and start fresh to prevent bacteria from growing.

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Joe

[p-oui]

Hi Joe, I am sorry to hear you have SCA1. I have PD for almost 2 years now, taking selegiline, NAC (mirroring the oral part of Thomas Jefferson trial) 600 MG 2x day, and 1.8 victoza 1x day. I also exercise.

Your research and posts on your regimen is interesting to me and I appreciate you sharing your insights. I would like to begin Mannitol and NIAGEN - 500 mg of niagen 2x day sounds like a lot and so I wanted to ask you about that...any recommendations are appreciated.

[Lana666 in reply to p-oui]

Could you please share your experience with victoza? If you are getting it off label,does the insurance cover? Thanks

[KERRINGTON]

Thanks much for all this research. It is so helpful.