giving mucuna prurien powder a try - Cure Parkinson's

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giving mucuna prurien powder a try

BUZZ1397 profile image
109 Replies

So, after reading many of your posts noting the benefit of eating/drinking mucuna prurien I've decided to go there. Just ordered a pound of the powder from Banyan, the american supplier. Buy American! Should be here in a week or so. I'll experiment around with it. I hope to be able to stop taking C/L but I'll be happy with any improvement in my movements. It doesn't cost very much happy to discover.

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BUZZ1397
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109 Replies
Jash profile image
Jash

best of luck; keep us posted

stevie3 profile image
stevie3

Will be interested to know how you get on.

nanmayer profile image
nanmayer in reply to stevie3

... AND

pen1 profile image
pen1

Can anyone tell me if there are any disadvantages to using Mucuna Pruriens(sp?) instead of, or alongside, Madopar? (Apart from it not being available on prescription in the UK and therefore presumably costing more than the standard prescription charge).

And as it apparently doesn't cause dyskenesias can anyone tell me why it isn't used and prescribed more in the UK?

Has anyone found it didn't help? Sorry to sound negative - I don't mean to be; I'm wondering whether to give it a go but feel I need to know a bit more before taking the plunge. . .I've read very positive reports which sound very promising and just want to check I've got a rounded view. If it's not successful I'm worried that I won't come back to the state I was in before taking it and will end up even worse.

I've also been told that broad beans somehow increase dopamine levels in the brain and that drinking the water they've been boiled in is very beneficial. Sounds fairly vile - anyone else experimented with broad beans?

SuperMNew profile image
SuperMNew in reply to pen1

I don't know about Madopar, but I took Mucuna Pruriens alongside ropinirole until I could stop the ropinirole. I now use only Mucuna Pruriens. It's a natural source of L-Dopa. I have not noticed any side effects like I did with ropinirole alone, and MP has NOT stopped working for me. I use the 98% Mucuna EXTRACT powder from Powder City. Get the extract. It's the pure L Dopa without fillers. powdercity.com/search?type=...

ruthgt profile image
ruthgt in reply to SuperMNew

Hi SuperMNew

I also use the 98% from powder city. Please d

Share with the doses you ar taking

cshamb profile image
cshamb in reply to SuperMNew

I have asked before but how much of the 98% powder do you take. I want to start taking with siminet. I have only taken now product capsules 15% so far but that's not enough. Thanks again for your help

tarz profile image
tarz in reply to cshamb

The claim which seems to imply 98% L-dopa is actually misleading. If you read the question-answer section of the ads, some of the companies will tell you that the 98%, in fact, refers to the purity of the mucuna powder, not the quantity of L-dopa in the capsules. Several companies are using this gimmick, seemingly to deliberately deceive the public into purchasing their product.

JohnAD profile image
JohnAD in reply to SuperMNew

Hi

How are you getting on with mucuna? I too am on Ropinirole after rejecting Madopar, Sinemet, Sertraline because of their horrendous side effects of severe fatigue and headaches, but still get almost as bad effects with it.

I have just found your post and am seriously considering trying mucuna (who wouldn't!).

Regards John

SuperMNew profile image
SuperMNew in reply to JohnAD

Hi John. I am three years taking mucuna. It is natural L-dopa and for me it provides more relief than ropinirole ever did. And I get consistent relief the same every night as long as I take mucuna on an empty stomach. If there is food on my stomach, I may not get any relief from symptoms at all.

When I decided against taking prescription meds for my situation, I did not even look back. I determined that there must be a natural remedy for me, and there sure was. I read the research on Mucuna, and how safe it is, and how many years (hundreds) it has been used to control Parkinson's tremors. Mucuna may not work for some folks, but it sure works for me. On several of my posts here on this blog, I have given a link to where I purchase Mucuna. God bless you!

Yo1ku profile image
Yo1ku in reply to SuperMNew

You are on the right track, I agreed. My husband just go “medication zero” Theo weeks now- he has his life back. Also he can smell my perfume and food aroma now. Good luck on your journey💪

JohnAD profile image
JohnAD in reply to SuperMNew

Thank you so much for your reply. I'm really sorry it's taken me so long to reply!

I am aiming at reducing my prescription medication down as far as possible, nil hopefully, to get rid of the side effects of fatigue and headaches.

Still waiting for my mucuna to arrive from India! Can't wait to try it.

All the best to you.

KERRINGTON profile image
KERRINGTON in reply to SuperMNew

Hi ! I'm on this wonderful site for 6 weeks now( it took yrs for me to come across it ) and happy to find someone like myself who is carefully using natural remedies. Presently I'm experimenting with the mucuna dose at 1/4 tsp 1 or 2 times daily, and 150 mg altihiamine 2 x daily, along with assortment of b complex, coq 10, fish oil,turmeric etc...I get my mucuna from Banyon.

yeramian profile image
yeramian in reply to SuperMNew

Hello,

My friend started on a %15 mucuna, but then had a meltdown and went onto Sinemet. I wonder what percentage the L-dopa is in your Mucuna and where you get it, also how much do you take each day? Lots of questions: Thank you

Sincerely

Gail

SuperMNew profile image
SuperMNew in reply to yeramian

Hello Gail: 15% Mucuna extract has 85% filler; it will not give you relief; it may make you feel good for a while. 15% is not strong. I have tried 15%, 45%, 75% and 90%, all in capsules. Now I have found 100% mucuna extract--no fillers. All of it is Mucuna extract. Here is the place I order from: nutrivitashop.com/l-dopa-10...

This is powerful stuff! It is in powder form, 100% pharmaceutical grade. Powder dissolves and goes to work faster than capsules that have to dissolve first. I take 1/2 tsp. of the powder dissolved in about a half cup water, followed by a full glass of water ON AN EMPTY STOMACH. If you have food on your stomach, you will probably vomit everything up in a short time after taking the mucuna. It has no taste, so it is easy to take. In about a half hour of taking this first dose, I can sleep 4 hours with no symptoms. Then, I have to get up again (symptoms return) and take another 1/2 tsp. I can then sleep another 4 hours or more. It's not ideal, but I've tried prescription meds, and I won't go there any more! I have no augmentation from the mucuna, and the same dose works every time. I have not increased the dose like I would have to do with prescription meds. I've been on this dose about three years. I hope this helps, Gail. Ask me anything. I want to help if I can.

ncpete profile image
ncpete in reply to SuperMNew

Now some 2 years after your post are still using 100% Muuna Pruriens extract? and what is your dosage for day time use?

SuperMNew profile image
SuperMNew in reply to ncpete

Yes, I am still using Mucuna. Same dosage I've used for several years, more than 2 years. I used 1/2 tsp. of the pure powder (I get mine from nutrivita--I've given the address in prior postings). The same dosage for me for these years has given the same relief each night. This natural powder does NOT induce side affects the same as drugs did for me. I will continue using it to provide my brain with the dopamine that it is not producing naturally. Hope this helps you.

Harleybob08 profile image
Harleybob08 in reply to pen1

Hi Pen,

I have been on a Mucuna regime for a year. I have never taken NHS medicines. I am 2 years from diagnosis, and my nurse, and neurologist are both impressed with my health.

I spent a year or so searching and experimenting before coming up with a solution. There is a guy named Marty Hinz who has been working on Parkinsons for 10 years or so using amino acids with some success. The problem with conventional medicines lies with the Carbidopa that is given to help with the nausea caused by the LDopa. Dr. Hinz uses 5HTP instead. It's a bit more complex of course, but the bottom line is that Carbidopa damages the body, 5HTP doesn't.

Ok, my search finished at the Cargioli Centre in Indiana. Dr. Ron Cargioli took me through the process of balancing my amino acids using FaceTime. He started on a couple of short sessions per week, and latterly just one per week. He charges about £2000 for a year of consultations, and a couple of the aminos are bought from him. The down payment is an act of faith, but I have found Ron to be extremely fair and honest; and, to be honest, it's an act of faith for him also.

My ongoing costs come to about £25 per week, but that is dependant on the cost of the Mucuna that's available. My costs initially were nearer £100, but hopefully supply and demand will keep prices down.

Why isn't this on the NHS? Because it hasn't been through the rigorous testing of Pharma drugs. Why not ? Because naturally occurring compounds cannot be patented. I think it's a scandal, but I'm biased.

Hope that helps. God bless.

AmyLindy profile image
AmyLindy in reply to Harleybob08

What is the conversion to dollars for the amounts you cited above please? And is Dr C a neuropath, OD, Doctor of Osteopathy/Chiropractics or other ? FaceTime- great!

Harleybob08 profile image
Harleybob08 in reply to AmyLindy

$1.34 per £1

Think Chiropractor, but not sure; should be on website. :-)

pdkid profile image
pdkid in reply to Harleybob08

Hello, Are you still on the Mucuna / 5HTP regime? Wondering what your dosages and frequency of dosages are. Just for clarification, the 5HTP acts the same way as Carbidopa does with Mucuna? What is the ratio of 5HTP to Mucuna you are taking? I just started my dad on Mucuna, but he still takes his sinemet for the carbidopa. Its helped alot in preventing his off periods, which have become horrible in the last 6 months. Thank you!

Harleybob08 profile image
Harleybob08 in reply to pdkid

Yes, still on mucuna. (100% ldopa. NutriVita)

6am & 2pm

1.3g mucuna

1g L Tyrosine

1Tab CysReplete

1 Tab NeuroReplete (5 HTP)

0.001g Folate

100mg vitamin b6

10am

As above, but no 5HTP, or folate.

I also take 250mg vit b1 morning and afternoon.

That is my regime, but it won’t be yours. We are all different.

I would strongly advise against mixing aminos and Carbidopa. They have a totally different effect on the blood brain barrier. It’s a disgrace we have to mess about like this with no professional help.

God Bless

pdkid profile image
pdkid in reply to Harleybob08

Wow thank you this is really helpful. And you're right, good reminder that everyone is different. So appreciated, take care

SuperMNew profile image
SuperMNew

Buzz, you may be disappointed in the results of the whole bean powder. It's great stuff, but it's low in L-Dopa. What you need to try is the EXTRACT. I bought mine from powdercity.com (powdercity.com/search?type=.... It cost me $3.71 for 10 grams. This is the 98% pure extract. It is very effective, at least for me. God bless.

silvestrov profile image
silvestrov in reply to SuperMNew

There is a way to use a natural replacement for carbidopa (sinemet = levodopa + carbidopa). Carbidopa is a aromatic l amino acid decarboxylase inhibitor, it inhibits an enzyme which prevents the conversion of levodopa into dopamine in the body so (the majority of the l-dopa) will be delivered into the central nervous system.

Use pure (natural) levodopa from the mucuna pruriens plant and combine it with (at least) 94%+ pure EGCG from green tea. EGCG is a decarboxylase inhibitor:

ncbi.nlm.nih.gov/pubmed/113...

If you are taking a MAO inhibitor some caution must be exercised when taking large doses of EGCG because it is also a MAO B inhibitor (which is good news if you are not on a MAO B inhibitor like azilect or selegiline):

ncbi.nlm.nih.gov/pubmed/204...

The problem with taking EGCG is it is not bio-available - readily absorbed, by the body. German researchers noted that 94%+ pure EGCG is better absorbed when taken with 200 mg vitamin C and 1,000 mg of omega three from salmon (salmon oil). Other conditions: EGCG is best absorbed on an empty stomach upon waking and again at 4:00 PM and caffeine, calcium, milk or hard water (heavy in minerals) must not be taken with the EGCG - they will prevent absorption) information source:

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

Are omega 3s good for Parkinson's (yes):

articles.mercola.com/sites/...

What other components of salmon oil are good for PD?:

Salmon oil and vitamin D:

livestrong.com/article/2855...

Is vitamin C good for PD (yes):

"CONCLUSIONS: Whereas vitamin C has a strong link with Parkinsonism..."

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

Is EGCG good for Parkinson's (yes): lib.dr.iastate.edu/etd/13626/

This combination could present itself for the early morning and late afternoon doses of levodopa, but what about the late morning and evening dose?

Entacapone is a Parkinson's drug used for on/off syndrome. Entacapone inhibits the catechol o methyl transverase enzyme which prevents this enzyme from converting levodopa into dopamine in the body - it has similar action to carbidopa. It just so happens than another catechin from green tea, quercetin, is also a comt inhibitor:

ncbi.nlm.nih.gov/pubmed/127...

Is quercetin good for Parkinson's (yes):

ncbi.nlm.nih.gov/pubmed/217...

But quercetin is not well absorbed so it has to be taken with bromelain - an enzyme from pineapples:

"Additionally, as I stated earlier, bromelain assists in increasing your body’s absorption and utilization of quercetin."

quercetinbromelain.org/

Upon waking - EGCG plus C, Omega 3 + levodopa

11:30 AM - Quercetin/bromelain + levodopa

4:00 PM - EGCG plus C, Omega 3 + levodopa

9:00 PM - Quercetin/bromelain + levodopa (if needed)

After having tried all of the above the only side effect I encountered was stomach gurgling from the salmon oil. The cheaper the salmon oil, the more gurgling you will experience.

Carbidopa = 94%+ pure egcg with 200 mg vitamin c and salmon oil

Entacapone = quercetin and bromelain

I developed this method over months (years) of research and make the most of it.

Rich

pen1 profile image
pen1 in reply to silvestrov

What a fascinating and informative post. Lots to study. Thank you Rich.

silvestrov profile image
silvestrov in reply to pen1

My pleasure. The only side effect I encountered from the EGCG + therapy was some stomach irritation....the cheaper quality salmon oil you buy the more stomach irritation you will have. Make sure it molecularily distilled to remove toxins. I have posted this many times because there are people who are looking for alternatives to Sinemet/Madopar and this is a viable alternative. The major question is proper dosing levels of the green tea extract/egcg and levodopa. A good combination of quercetin/bromelain is: allstarhealth.com/de_p_ref/...

94% pure egcg: pureencapsulations.com/teav...

98% pure egcg (and it's cheaper): amazon.com/dp/B00GZQFGGG?psc=1

SuperMNew profile image
SuperMNew in reply to silvestrov

Thanks so much, silvestrov! What about dosage? Can you give us more info as to what you are doing? Do you have RLS or PD?

silvestrov profile image
silvestrov in reply to SuperMNew

I have PD. My use of levodopa + EGCG....has evolved quite a bit. I previously used the amino acid tyrosine but, with time, I became agitated because tyrosine produces a lot of noradreniline and I was wired up and had to quit. Since large doses of levodopa are required (wthout carbidopa) I was taking 500-1,000 mg/day). I have been investigating the medicinal properties of tea and I noticed EGCG is a decarboxylase inhibitor and quercetin is a comt inhibitor. I taken (in the morning) 500 mg (mucuna pruriens) levodopa with a 670 mg standarized green tea extract containing 400 mg of 98% pure EGCG (a massive dose). Along with 1,000 mg salmon oil & 200 mg vitamin C.

amazon.com/dp/B00GZQFGGG?psc=1

NOW has a green tea supplement and it is only 400 mg (60% catechins).

As for yourself, I would try to imitate the time and dose of Sinemet/Madopar you currently take combined with EGCG.....quercetin, etc.

There are other reasons to take EGCG:

If a PD patient has a Helicobacter pylori stomach infection it can interfere with the absorption of levodopa. EGCG is antagonistic towards Helicobacter pylori:

"Thus, our result implies that continuous intakes of green tea could prevent the deleterious consequences of H. pylori infection."

ncbi.nlm.nih.gov/pubmed/156...

PD patients also have constipation problems and the bacteria involved is Clostridium difficile.

the-scientist.com/?articles...

EGCG and C. diff:

"...EGCG has significant antipathogenic effects on C. difficile and can be used to prevent or treat C. difficile-associated diseases or C. difficile infections."

ncbi.nlm.nih.gov/pubmed/265...

Quercetin and H. pylori:

"CONCLUSIONS:

Our results indicate that in vivo oral quercetin administration decreases H. pylori infection in the gastric mucosa and reduces both the inflammatory response and lipid peroxidation."

ncbi.nlm.nih.gov/pubmed/186...

I am fortunate I do not have to take additional amounts of levodopa (in addition to 500 mg in the AM). The reason is my body responded to a combination of CoQ10, magnesium, multiple B vitamins............other minerals. CoQ10 responsiveness is unpredictable. In clinical trials it has earned a 'C' because it sometimes works and sometimes does not. It worked for me. After taking 1,200 mg CoQ10 a day my chest fasciculations went away and PD essentially went into remission. I feel rather lucky.

Rich

PS. Silvestrov (Ukrainian) is one of my favorite composers:

youtube.com/watch?v=bakdjEC...

SuperMNew profile image
SuperMNew in reply to silvestrov

Thanks so much, silvestrov! You were very thorough in your explanation. I appreciate your help. There is so much desperation "out there" from folks who cannot find natural methods to help their situation. I absolutely HATE drugs; my two experiences with prescription drugs both ended badly. So I am NOT going to repeat drug therapy if I can help it. My doctor has a good heart and is willing to work with me, so I feel blessed. After a lot of late-night research for natural modalities that had some science behind their use, I actually, TOLD him what I was going to do; I did not ask him. He was okay with it and appreciated receiving the printouts I supplied.

BTW, how long have you been taking your current protocol?

silvestrov profile image
silvestrov in reply to SuperMNew

I have been experimenting over the last 2 months with either EGCG or quercetin/br and EGCG does work best with salmon oil. I tried (non-health food store) high potency fish oil and it gave me some indigestion. High(er) quality (Norwegian) cod liver oil caused very mild upset and salmon oil, no upset stomach at all.

When I first tried the EGCG + therapy with 500 mg levodopa from MP it felt like a warm ambient light was gently floating in my head. Amongst its other qualities, EGCG has anxiolytic (anti anxiety) activity (and it certainly was pleasurable): sciencedirect.com/science/a...

BUZZ1397 profile image
BUZZ1397 in reply to silvestrov

Oh, yes, the warmth I have been feeling that too. As I am experimenting I am not knowing if that warmth is withdrawal of the C/L or the effect of the EGCG/MP. Time will tell. So far the only positive effect is in fluidity of movement (decreased cog-wheeling) and increasing grip strength in my effected hand. The other apparent effect is visual and may be because I am a little high on MP but it seems my eyesight has improved. But I cannot trust that it is so. Probably a placebo effect.

silvestrov profile image
silvestrov in reply to BUZZ1397

Well, if the effect lasts longer than 2 years it is not a placebo effect - time will tell. I am glad to hear you feel some improvement (for whatever the reason). This therapy needs to be experimented with because everyone may have a different 'sweet spot' for the dose of levodopa required.

Perhaps the EGCG is positively effecting your eyesight because I did a search and found the following article:

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

It was difficult finding 200 mg vitamin C so I ordered childrens 100 mg 'gummys' to take with the EGCG. It is a hell of a lot easier (and faster) chewing a couple gummys than measuring out 200 mg of vitamin c from a capsule. What a pain in the neck!

BUZZ1397 profile image
BUZZ1397 in reply to silvestrov

Holy moly! I use moisture drops every day sometimes twice for dry eyes on recomendation of the opthallmologist. What a serrindipitous outcome is the EGCG fo me. Hey that rhymes.

silvestrov profile image
silvestrov in reply to BUZZ1397

You just never know where things may go.....sorry about that. Yes it is a truly strange result....but a happy one. May it continue.

tbirchf profile image
tbirchf in reply to BUZZ1397

BUZZ1397, How are you doing with the mucuna pruriens powder? My husband tried replacing some of his Carba/levo with mucuna, but does not like the nausea it causes, even in small dosage (50mg). No fun to feel sick.

Toogood profile image
Toogood in reply to silvestrov

Could you let me know what EGCG is please

Alenaf profile image
Alenaf in reply to silvestrov

Dear Silvestrov, What dosing of quercetin/bromelain +ldopa has worked for you?

Thank you in advance!

Alena

silvestrov profile image
silvestrov in reply to Alenaf

This 'protocol' is experimental and with no lab tests to monitor the metabolites of dopamine in the urine I had to guess about the dose size and frequency of the quercetin/bromelain dose. I looked for a product which offered 6 pills per day so the dose could be divided into 2 que/bro per dose of levodopa. The product that best fit these criteria is made by NOW. The NOW label states 2 capsules equal 800 mg of que and 165 of bro. They are to be taken 20 minutes before a meal but that rule can be broken. I have been taking them for a while (not sure for how long) and have had no side effects when taking them at least 1 hour before a meal. With que/bro I take 400 mg of EGCG twice a day (90% EGCG) and it is high purity. I take about 450 mg pure levodopa too with 1000 mg salmon oil and 200 mg vitamin C. Of course, everyone's dose of dopamine needs to be experimented with so it may go up or down depending on your needs. What made me consider this idea was, in addition to EGCG being a decarboxylase inhibitor like carbidopa, and quercetin being a COMT inhibitor like entacapone, is because levodopa can be toxic to the substantia nigra and antioxidant support is recommended to try and prevent free radical damage. Hence EGCG and Quercetin/bro are both free radical scavengers and perhaps, I hypothesized, the combination would be a multi function therapy: dopamine replacement and free radical scavenging. When I first tried this combo there is a subjective state in the mind that I experienced (and Buzz felt it too). I know this sounds 'hippy-dippy' but it was as if a gentle light was rising in my head and it was a very relaxing experience. EGCG is and anxiolytic and binds to the GABA A receptor and perhaps this is a measure of EGCG absorption: an anti anxiety effect.

Anxiolytic properties of green tea polyphenol (−)-epigallocatechin gallate (EGCG)

sciencedirect.com/science/a...

As I stated the dose of EGCG should not be too big because it will be too relaxing and can cause de-motivation. (You zone out.) To hedge my bets I also take milk thistle, NAC and the combination of alpha lipoic acid and acetyl l carnitine to protect my liver from possible effects of EGCG. I have noted that dieters have had temporary liver damage from taking large doses of EGCG thus the use of neuroprotective and liver protective components like the ones I listed.

In clinical trials 800-1,200 mg of egcg was taken per day with no consequence so I have to ask how much EGCG/green tea extract were the dieters actually taking?

I hope this helps and off I go...

NOW quercetin/bro:

images.iherb.com/l/NOW-0307...

Alenaf profile image
Alenaf in reply to silvestrov

Dear Silvestrov, thank you for the response! It helped a lot! If you do not mind me asking, how much water (not liquid, but water) do you drink per day? Thank you. Alena

silvestrov profile image
silvestrov in reply to Alenaf

Really I never counted how many glasses of water I drink per day but as a guess???? I would have to say about 6 -8 then some tea/coffee to that list.

Mucuna123 profile image
Mucuna123 in reply to silvestrov

I have a question for you. Did quercetin give you bad headaches? I tried mucuna 100 % and quer Erin and had a horrible headache and bad reaction. Any idea why it happened?

BUZZ1397 profile image
BUZZ1397 in reply to Mucuna123

Never but I do not use 100 % mucuna And only use quercitin Once in the mornings. Later doses of mucuna are taken with green tea extracts. Guess maybe should try adjusting size of doses. One size does not fit all

rebtar profile image
rebtar in reply to silvestrov

This isn't a new post hopefully my question will be seen. When you say "pure" (natural) levodopa do you mean the form of mucuna with it's natural percentage of LD content, rather than an extract? I was planning to try the extract mucuna with high LD content.

silvestrov profile image
silvestrov in reply to rebtar

I use 99% pure levodopa derived from mucuna and I buy it in bulk from either India or Thailand via Ebay. Pure levodopa can be purchased online from other countries but it is more expensive. In Canada only a 3 month supply can be purchased at a time. The effective dose of of levopdopa, from those who tried this method, is between 350 and 700 mg per serving. The dose of EGCG people have tried is between 400 and 1,000 mg and I think 400 mg is best.

The following article discusses the conditions under which EGCG is best absorbed (and this includes EGCG purity +94%):

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

1,000 mg is a high dose, most clinical studies max out between 800 and 1,200 mg. High dose EGCG, can cause liver problems and most interestingly, for the woman who took 1,000 mg, she became demotivated and unproductive. The people who had liver problems were dieters and if you have concerns take a Milk thistle/silymarin supplement because it has been shown to protect the liver in various models including toxic tuberculosis antibiotics & TB patients. NAC, n-acetyl cysteine, is good for the liver and, like M. thistle, is good for PD too. Either isoquercetin or a quercetin/bromelain combination is best for stabilizing and absorbing EGCG. In a caco cancer cell model, quercetin reduced EGCG methylation and increased absorption:

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

I am adding the info on quercetin, EGCG...because this thread discusses combining various supplements with EGCG to reduce the conversion of natural levodopa in the body so it can enter the brain and central nervous system to be converted into levodopa dopamine. Normally, only 5% of levodopa will reach the blood brain barrier to be converted into dopamine without the use of a 'dopa decarboxylase' inhibitor like carbidopa/benserizide. Quercetin, like entacapone, is a COMT inhibitor and the above article mentions this fact.

Year's ago, in the infancy of levodopa use, there was a B complex vitamin called Larobec which does not contain pyridoxine:

archive.org/stream/northwes...

Pyridoxine increases the conversion of levodopa to dopamine in the body and carbidopa decreases this conversion. In old science PD articles, 2-6 grams of pure levodopa were given daily. In Oliver Sachs book, Awakenings, he gave encephalitis lethargic patients 1-4 grams daily. Both natural and synthesized levodopa can cause niacin deficiency so taking 250 mg slow release niacin is recommended. Niacin also reduced inflammation from the GPR 109a (niacin) receptor and GPR 109a is known to be inflamed in PD patients.

rebtar profile image
rebtar in reply to silvestrov

Thanks so much for your reply! I have a few more questions that I'm hoping to get help with.

1- Is there anything you can recommend that would help with possible MP gastrointestinal side effects? I have a sensitive gut and when I tried MP for the first time (NOT a pure extract) I had horrible bloating and the runs. I've now purchased the pure extract, but I'm still wondering what I can do, if my gut reacts badly.

2- I take several supplements first thing in the am and before bed, on an empty stomach (DL Phenylalanine, 5MTHF, NAC and GABA) . Can these be taken together with the MP protocol, or do I need to separate them?

3- Are there any B complex supplements without B6 that you know of? I currently take a B complex with B6 so I'd have to suspend that. I remember seeing somewhere that B5 is also a problem, is this the case?

4- You shared a protocol of four daily doses, two with EGCG salmon oil and VC, and two with quercetin/bromelain. Are these interchangeable? If I need fewer doses, should I still divide between EGCG and quercetin?

Much gratitude for all of your research and sharing of knowledge and experience.

silvestrov profile image
silvestrov in reply to rebtar

Sorry about the late reply but I have been brutalized by work/life and my time has been limited.

1- Is there anything you can recommend that would help with possible MP gastrointestinal side effects?

I would try using the pure mucuna extract because if you did not have GI side effects with Sinemet/Madopar, pure synthetic levodopa with a decarboxylase inhibitor, there is a good chance that the non-levodopa component of you mucuna pruriens extract is causing the issue(s).

"Mucuna pruriens contains many diverse Phytochemicals like 1-methyl-3-carboxy-6,7-dihydroxy-1 2,3,4-tetrahydroisoquinolone, 5-hydroxytryptamine, 5-methoxy-n,n-dimethyltryptamine-n-oxide, 5-oxyindole-3-alkylamine, 6-methoxyharman, Alanine, Arachidic-acid, Arginine, Aspartic-acid, Behenic-acid, Beta-carboline, Beta-sitosterol, Bufotenine, Choline, Cis-12,13-epoxyoctadec-trans-9-cis-acid, Cis-12,13-epoxyoctadec-trans-9-enoic-acid, Cystine, DOPA, Gallic-acid, Glutamic-acid, Glutathione, Glycine, Histidine, L-DOPA, Lecithin, Leucine, Linoleic-acid, Mucunadine, Mucunain, Mucunine, Myristic-acid, N,n-dimethyltryptamine, N,n-dimethyltryptamine-n-oxide, Nicotine, Oleic-acid, Palmitic-acid, Palmitoleic-acid, Phenyalanine, Phosphorus, Proline, Protein, Prurienidine, Prurienine, Saponins, Serine, Serotonin, Stearic-acid, Threonine, Tryptamine, Tyrosine, Valine, Vernolic-acid."

google.com/patents/US7470441

And with this many chemical component in the herb, who knows which combination is causing your problem?

2 - "I take several supplements first thing in the am and before bed, on an empty stomach (DL Phenylalanine, 5MTHF, NAC and GABA). Can these be taken together with the MP protocol, or do I need to separate them?"

I don't think 5MTHF will effect levodopa therapy but and NAC and DL Phenylaline might (more on DL P below) because they are amino acids. I take 5MTHF with food and, and at the same time, I take methylcobalamin. So yes, I would move it to a meal but for the reason of getting better absorption. In terms of B vitamins this combination is kinda like a dynamic duo because they work so well together. Both help to lower (levodopa induced) homocysteine levels and are methyl donors. DNA methylation is one of the reasons why L-dopa stops working and 5MTHF and methylcobalamin are essential to take while taking any form of levodopa.

parkinsonsnewstoday.com/201...

I would change the timing on taking NAC because it can be taken between or with meals.

DL Phenylalanine will interfere with the conversion of levodopa into dopamine because it is a precursor of levodopa.

DL Phenylalanine is converted into: Tyrosine is converted into: levodopa is converted into: dopamine.

(Both DL P and tyrosine are converted into other neurotransmitters but for sake of simplicity I focused on dopamine production.)

In the article Amino acid management of Parkinson's disease the authors use mucuna puriens levodopa and tyrosine at the some time and this is a parallel to the use of DL Phenylalanine with levodopa.

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

In the article on endotoxin.com an unfortunate young lab assistant was infected with 10 mcg of lipopolysaccharide from Salmonella Minnesota through a cut and it destroyed her substantia nigra thus causing permanent parkinsonism. One of her therapies was taking DL Phenylalanine (though she later started L-dopa therapy and I am not sure she took the two together):

Parkinsonism caused by Lipopolysaccharides

of Salmonella Minnesota (a Case Report)

"The symptoms of parkinsonism are treated with the racemate DL-phenylalanine. L-phenylalanine increases the concentration of dopamine in the brain and D-phenylalanine the concentration of ß-phenylethylamine so that this treatment restores the balance between the phenethylamine-dopamine and the acetylcholine-serotonine-tryptamine side. DL-phenylalanine has no side effects like L-dopa and it is not toxic for the dopaminergic neurons."

endotoxin.gmxhome.de/

Summation: Take 5MTHF with food. Move NAC between meals (or with meals). DL P may increase the dose of required levodopa (in any form) so it is highly experimental to take the two at the same time. In the Amino acid mgt article, the authors balance the use of tyrosine, levodopa and 5-htp with urine metabolite testing. So it is complicated to use them together but it is possible. If you decide to move the DL P it would depend on your timing of taking the levodopa and you are right in taking it on an empty stomach - protein will interfere with its conversion into downstream products. If it has benefited you continue taking it sometime. I previously took tyrosine for years but I found it 'geeked' me out - too much noradrenaline was produced so I was in a state of constant 'fight or flight' syndrome. Now I cannot touch tyrosine and stick to pure levodopa from MP.

GABA should not effect the conversion of levodopa to dopamine. I am glad GABA is helping you and I am sorry it is helping you. Whaaat? GABA does not cross the blood brain barrier and it should not relax you because of this fact. But in people with neurological diseases GABA can reach the brain because the BBB is porous, for an undetermined reason.

3- Are there any B complex supplements without B6 that you know of? I currently take a B complex with B6 so I'd have to suspend that. I remember seeing somewhere that B5 is also a problem, is this the case?

Because most B complex supplements have generic forms of the B vitamins I take them individually and in better forms. I cannot take B5 - pantothenic acid, I run like an old automobile carburetor with too much gasoline and 'stall out' (crash and go to sleep). Yes I have read B5 can interfere with levodopa but it is a component of Larobec - though only at 20 milligrams. For whatever reason Larobec does not contain biotin? I think that was an oversight. Really of all the B vitamins panthothenic acid has little or no use in the treatment of neurological conditions. Biotin, on the other hand, has been used to treat neurological conditions:

msard-journal.com/article/S...

ncbi.nlm.nih.gov/pubmed/242...

Sure B complex vitamins all work together for energy production but some are clearly more important than others especially for people with a neurological condition.

4- You shared a protocol of four daily doses, two with EGCG salmon oil and VC, and two with quercetin/bromelain. Are these interchangeable? If I need fewer doses, should I still divide between EGCG and quercetin?

My division of the EGCG doses was decided on after reading the article,

Epigallocatechin-3-gallate (EGCG) for Clinical Trials: More Pitfalls than Promises?

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

The authors tried to maintain EGCG in the plasma blood and divided the doses 1) upon waking - I think 7 AM, it has been a while since I read it, and 4 PM with salmon oil, vitamin C, 94%+ pure EGCG with no minerals/calcium/magnesium, hard water (which is heavy in minerals), milk or caffeine. Food interferes with EGCG absorption so empty stomach is a must. It occurred to me that those times coincide with taking levodopa and at this point I decided to combine the supplements. Quercetin is a comt inhibitor and it was a no brainer to add it in the cocktail because it also helps absorb the EGCG.

If you need fewer doses use all the components together. EGCG + Quercetin/bromelain + vit C + salmon oil + MP pure levodopa

I have to go and do my taxes I am been procastinating and enough is enough.

I hope this helps.

rebtar profile image
rebtar in reply to silvestrov

Fabulously helpful, as always, Silvestrov. All of your research and lucidity on this is impressive and I'm most grateful for your help.

silvestrov profile image
silvestrov in reply to rebtar

"Cowhage also contains prurieninin, which might slow heart rate, decrease blood pressure, and stimulate intestinal peristalsis."

This component may explain your physical reaction to mucuna.

rebtar profile image
rebtar in reply to silvestrov

Which b vitamins do you reccommend taking?

silvestrov profile image
silvestrov in reply to rebtar

I decided to not list the B vitamins in any specific order and will relate them to PD. First of all a high protein diet inhibits the functionality of L-dopa therapy because proteins inhibit (compete with) the conversion of levodopa into dopamine so it is recommended that PD patients eat a meat-free diet for breakfast and lunch then consume protein with dinner. This improves the conversion of levodopa into dopamine but has nutritional consequences. First of all, red meat is a great source of cobalamin - vitamin B12, and B12 and folate are needed in higher doses by the human body because any form of levodopa (synthetic or natural) raises homocysteine levels:

Homocysteine and levodopa: should Parkinson disease patients receive preventative therapy?

ncbi.nlm.nih.gov/pubmed/153...

.......preventative therapy?

Hyperhomocysteinemia in L-dopa Parkinson's disease patients: effect of cobalamin and folate administration

"Analysis of data revealed that Hcy levels were higher in L-dopa treated PD patients when compared with age- and sex-matched controls and that supplementation of the diet with cobalamin and folate is effective in reducing Hcy concentrations;"

deepdyve.com/lp/wiley/hyper...

The best form of folate is methyltetrahydrofolic acid (MA). If you buy folic acid it needs to be converted (reduced) into MA. Most doses of MA are 400 or 800 mcg in dietary supplemental. I take 400 mcg and there is a another question at hand, is there a relationship between folate/folic acid/MA and PD?

Folic acid could suppress Parkinson’s – new study

www2.le.ac.uk/offices/press...

The most potent form of cobalamin, and I swear by this stuff, is methylcobalamin.

Most purchased B12 supplements (and doctor's injections) contain cyanocobalamin (CBLN). CBLN is not used in Europe or Japan and is an inferior form of B12 because it has to have the trace amount of cyanide removed by the body before it can be transformed into the bioactive forms which include methylcobalamin (MCBLN). Cyanocobalamin is more stable than MCBLN because it is not light sensitive like MCBLN.

A standard 'maintenance' dose of cobalamin is 1 mg/day and for those with neurological conditions larger doses are required. Scientists have experimented with huge therapeutic doses of methylcobalamin on ALS, Bell's palsy, MS patients.....with no side effects other than extending the lives of the patients. The following article discusses how doctors used up to 50 mg a day! of intravenous MCBLN on ALS, etc.. patients with perfect safety:

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

"Also in Japan, in 2007, patients with the incurable neurodegenerative disease ALS (Lou Gehrig’s disease) received daily injections with 25 mg methylcobalamin for 4 weeks, followed by daily injections of 50 mg intravenously, followed by 50 mg a week. In the long term, treated patients survived for longer because of this, than did untreated patients."

stichtingb12tekort.nl/weten...

I have taken between 2.5 - 5.0 mg/day sublingual dose of MCBLN for at least 5 years and have had no negative side effects. In studies sublingual B12 is just as effective as injections for raising B12 levels.

Levodopa can cause peripheral neuropathy:

Neuropathy in Parkinson’s Disease May Be Related to L-Dopa Exposure

"Cumulative L-dopa exposure was associated not only with PN, but also with elevated fasting MMA levels across all IPD patients in the study. L-dopa exposure was also associated with PN severity in the IPD patients with PN."

medscape.com/viewarticle/72...

And what can be used as therapy?:

Folate and cobalamin.

Folate responsive neuropathy.

ncbi.nlm.nih.gov/pubmed/817...

The peripheral neuropathy of vitamin B12 deficiency.

ncbi.nlm.nih.gov/pubmed/609...

So there are many reasons to take B12 and folate.

For those people taking levodopa/carbidopa or benserazide (Madopar) they have to take P5P - pyridoxyl 5 phosphate. P5P is the bioactive form of pyridoxine (vitamin B6) and carbidopa can cause deficiency of B6 (and niacin) because it is a hydrazine deravitive.

Brain Neurotransmitters in Pyridoxine Deficiency*

biochemsoctrans.org/content...

"Several medications, including anti-tuberculosis drugs, anti-parkinsonians, nonsteroidal anti-inflammatory drugs, and oral contraceptives, may interfere with vitamin B6 metabolism. (More information)."

"High levels of circulating homocysteine are associated with an increased risk of cardiovascular disease. Randomized controlled trials have demonstrated that supplementation with B vitamins, including vitamin B6, could effectively reduce homocysteine levels."

lpi.oregonstate.edu/mic/vit...

As stated pyridoxine should be taken by every person taking carbidopa/benserazide. Unless you take consistent doses of EGCG and quercetin to inhibit conversion of dopamine from levodopa in the body, pyridoxine is not recommended for use with mucuna pruriens alone.

Inhibition of Kynurenine Hydrolase by Benserazide, Carbidopa and other

Aromatic Hydrazine Derivatives : Evidence for Sub-clinical Iatrogenic Niacin Deficiency

biochemsoctrans.org/content...

In my opinion every single PD patient should take 250 mg/day of time released niacin. In addition to offsetting niacin deficiency it also relieves inflammation by binding to and offsetting inflammation from the GPR109a receptor (niacin receptor 1):

Upregulation of GPR109A in Parkinson’s Disease

researchgate.net/publicatio...

Low-dose niacin supplementation modulates GPR109A, niacin index and ameliorates Parkinson's disease symptoms without side effects

researchgate.net/publicatio...

In the above article they state niacin but not nicotinamide (the amide form of niacin) effects GPR109a. The author's also state that niacin and nicotinamide are neuroprotective in PD but have different ways of doing so. Consequently, both should be taken simultaneously. 250 mg of extended release niacin and up to 3,000 mg of nicotinamide (the maximum recommended tolerable dose by regular allopathic doctors). In the 1930's a doctor by the name of Kaufman experiemented with nicotinamide and discovered that low doses are safely absorbed and can be taken throughout the day. Nicotinamide/niacinamide has a 1 1/2 hour cycle of injestion to conversion of NAD - nicotinamide adeninine dinucleotide, an important source of energy as noted in this non-melanoma UVB study:

Oral nicotinamide protects against ultraviolet radiation-induced immunosuppression in humans

1 1/2 cycle:

oup.silverchair-cdn.com/oup...

The entire study:

academic.oup.com/carcin/art...

PD patients are more prone to getting non-melanoma skin cancer (NMSC) and the article stated that 500 mg/day of nicotinamide affords protection against NMSC.

PD & NMSC:

link.springer.com/article/1...

Nicotinamide/niacinamide will only protect against non NMSC and not melanoma.

Regular science studies use at least 1,000 mg niacinamide per dose (with food) and it is generally well tolerated but at the 250 mg dose there are no side effects. I have taken 12 doses a day (every 1 1/2 hours) and it works but it is tedious. Given my busy life I take 500 mg of nicotinamide with every meal (1,500 mg/day).

One reason why I use nicotinamide is it is good for osteo arthritis:

The effect of niacinamide on osteoarthritis: A pilot study

"Global arthritis impact improved by 29% (95% confidence interval [CI] 6, 46) in subjects on niacinamide and worsened by 10% in placebo subjects (p=0.04). Pain levels did not change but those on niacinamide reduced their anti-inflammatory medications by 13% (95% CI 9, 94; p=0.01)."

link.springer.com/article/1...

Remarkably, niacinamide has been shown to be a potential therapy in Parkinson's, MS, ALS, AIDS, Alzheimer's and Friedreich's ataxia.....

Niacinamide also comes in a slow release from with varying dosages and this may alleviate the need to use 250 mg every 1 1/2 hour.

In a Brazilian PD study PD patients were diagnosed with a riboflavin deficiency and were placed on 30 mg of riboflavin every 8 hours and they also quit eating red meat:

High doses of riboflavin and the elimination of dietary red meat promote the recovery of some motor functions in Parkinson's disease patients.

ncbi.nlm.nih.gov/pubmed/145...

In Alabama USA researchers are doing important research work about PD and proteosome inhibitors and found that riboflavin prevented cell damage by proteosome inhibitors (PI) (there is a PI model of PD):

Mitochondrial dysfunction, oxidative stress, and neurodegeneration elicited by a bacterial metabolite in a C. elegans Parkinson’s model

"In these experiments, riboflavin treatment significantly rescued Streptomyces venezuelae neurotoxicity (Figures 4a, c, and d)."

nature.com/cddis/journal/v5...

The PI model of PD is very serious and in addition of S. Venezualae bacteria another bacteria, Nocardia asteroides, also produces PI and were investigated by Dr. Blaine Beaman in his PD/NA studies:

Scientists link soil particles to Parkinson's

"He and his colleagues took samples of nocardia and infected mice with them. Many mice developed abnormal movements - shaking, hunched posture and slowness in action - similar to those displayed by Parkinson's patients."

"The effects were like those produced by Parkinson's in the brain: protein clumps formed in monkey brains and dopamine-producing cells were killed off. But the Californian team also found that once bacteria produce such brain damage, they die without leaving any evidence. 'That means we cannot expect to find bacteria in Parkinson's patients and so confirm our theory,' said Beaman."

theguardian.com/uk/2001/sep...

The last B vitamin (which is important to PD) is thiamine. There is evidence of subclinical deficiency of thiamine (B1) in PD. If PD patients had a clinical deficiency of B1 they would concurrently have Beriberi, or Wernicke–Korsakoff syndrome.

The Role of Thiamine Deficiency in Alcoholic Brain Disease

pubs.niaaa.nih.gov/publicat...

Considering I did not find any cases of PD in Beriberi patients or alcoholics with Wernicke–Korsakoff syndrome I concluded that thiamine deficiency may contribute to the severity of PD but is not a cause of PD.

Studies have shown that intravenous thiamine can improve the symptoms of PD patients but this option is not available for most PD patients. There is a synthetic form of thiamine which was developed by the Japanese as a response to their submariners having thiamine deficiency. It is called sulbutiamine and it has been tested on PD patients:

Use of sulbutiamine in the treatment of Parkinson's disease, schizophrenia, alcoholism, and dysthymia

Effects of Sulbutiamine on Cognitive Slowing, Objective and Subjective, and on the Feeling of Fatigue of Parkinson's Patients

"In Parkinson's patients, treated with sulbutiamine, an improvement in the cognitive, executive and mnesic functions was observed, with diminution of the sensation of fatigue."

freepatentsonline.com/58639...

Arcalion (Sulbutiamine) - 200mg (60 Tablets)

There are other, less expensive suppliers of sulbutiamine.

is pharmaceutical grade sulbutiamine and it should NOT be taken by people with bipolar disorder:

Sulbutiamine, an 'innocent' over the counter drug, interferes with therapeutic outcome of bipolar disorder.

sweb.uky.edu/~zyu224/drug-a...

The combination of thiamine and magnesium is essential because magnesium facilitates thiamine use in the body:

Aggravation of thiamine deficiency by magnesium depletion. A case report.

ncbi.nlm.nih.gov/pubmed/405...

The 2 best forms of magnesium I have used are magnesium threonate and magnesium chloride. Heavy metal toxicity is associated with PD and magnesium chloride can be used to detox metals:

A pilot study to determine the

impact of transdermal magnesium treatment on serum levels and whole body CaMg ratios

cnelm.com/NutritionPractiti...

Magnesium threonate is currently being tested on patients with dementia:

clinicaltrials.gov/ct2/show...

I consider pantothenic acid, B5, the 'chicken soup' of B vitamins because though a deficiency can cause neurological problems a B5 deficiency is extremely rare and almost impossible to get. B5 is in almost every food source and the following article spells out this fact:

whfoods.com/genpage.php?tna...

I think these B vitamins are the best and most important ones for PD:

Thiamine (B1)

Riboflavin (B2)

Niacin/Niacinamide (B3)

Pyridoxine (B6) - depending??

Folate (B9)

Cobalamin (B12)

-----------

B5 is in every food and may influence the use of L-dopa therapy (I read this a long time ago - can't find the source). And considering it does not agree with me, I don't take it.

Biotin has been used for other neurological conditions and though there are no concrete links with PD, I have taken it also.

Gotta go here and finish my taxes.

Rich

rebtar profile image
rebtar in reply to silvestrov

Many, many thanks, my friend. Now I have a lot to sort through to come up with my protocol.

kaleiann profile image
kaleiann in reply to silvestrov

is there a brand of egcg that you prefer on vitacost or amazon? thank you!!!

silvestrov profile image
silvestrov in reply to kaleiann

The EGCG capsule from Swanson is the right size and quality.

swansonvitamins.com/swanson...

kaleiann profile image
kaleiann in reply to silvestrov

thanks ! you like that better than my relentless improvement EGCG green tea extract ? I thought I saw that you recommended that one before.

silvestrov profile image
silvestrov in reply to kaleiann

Basically whichever EGCG supplement you purchase it must conform to the criteria stayed in this article:

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

It is your choice and the supplement should be around 400 mg. Most clinical trials use EGCG in 400 mg doses. EGCG should be accompanied with quercetin/bromelain to prevent EGCG methylation and enhance EGCG absorption.

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

kaleiann profile image
kaleiann in reply to silvestrov

Hi so in total per day do you only take 800mg egcg( 2 caps), querc 1600 mg/brom 330mg (4 caps) 2000mg salmon oil(2 caps)and 400 mg vitamin c divided into 2 doses each?

Thanks for clarification

kaleiann profile image
kaleiann in reply to silvestrov

Just to make sure i'm understanding dosages in total per day are you only taking 800mg egcg, 1600 mg querciten/ 330 mg bromelain, 400mg vit c, and 2000mg salmon oil in addition to the mucuna plus other assorted supplements?

thanks! appreciate your help!

silvestrov profile image
silvestrov in reply to kaleiann

Yes this is correct plus I take additional DHA omega 3's because I have concluded that it is one of my most important supplements I take. Unless you are on a blood thinner (fish oil thins the blood) taking 3,000 mg of fish oil a day is safe.

AmyLindy profile image
AmyLindy in reply to silvestrov

Great info 🤠

Mucuna123 profile image
Mucuna123 in reply to silvestrov

I have tried quercetin and it gives me strong headaches. Do you have the same problem?

BUZZ1397 profile image
BUZZ1397 in reply to SuperMNew

Thanks for the info. I'll see...baby steps, baby steps

tbirchf profile image
tbirchf in reply to SuperMNew

Powdercity's web site tells me there is no payment method available in my area when I try to order, so I cannot place an order. They do not answer when I email them (3 times!), and they do not have a phone number that I can find. Anyone else have this problem with Powdercity?

SuperMNew profile image
SuperMNew in reply to tbirchf

Try this website. It is much better. nutrivitashop.com/products/...

GrandNan profile image
GrandNan in reply to SuperMNew

Good evening ~ I am new to this forum, and when my husband and I both went to PowderCity.com - all that came up were capsules from a company that was not Powder City. I cannot seem to find the powder which you speak about in your comments. Could you send your link? thank you!

nancy

SuperMNew profile image
SuperMNew in reply to GrandNan

Nancy, try this link: nutrivitashop.com/l-dopa-10...

GrandNan profile image
GrandNan in reply to SuperMNew

Thank you so much!! My husband was diagnosed 1/2018, and just has right hand tremors and some slowing in his gait. He refused all medications after researching side effects. He's gone keto the last 2 years, mostly organic, switched off all soda (good thing) and will now add green tea & Rooibos instead of just black tea. This forum has been SO beneficial, especially the fast response times to my questions. Very thankful and most appreciated!

Lord bless your journey as well

Nancy

SuperMNew profile image
SuperMNew in reply to GrandNan

Thanks for your kind words, Nancy. I, too, refused drugs. That's why I chose Mucuna Pruriens. I've used it for several years...never had side effects (once I got my dosage right) and have not had to increase it at all. Same amount every night. I can live with that rather than all the side effects that come with drugs. God bless!

pen1 profile image
pen1

This is so fascinating and makes so much sense. I am especially interested in the focus on gut bacteria as I have had 'gut' problems since a child (i'm 59) and am sure that this was the first indication of Parkinsons. (Both my adult children have similar gut issues and although I've said nothing to them it worries me. I've just become involved in research into gene alteration in people with young onset here in the UK - if they find any changes then my family may be investigated.) I've got a feeling, from the occasional piece of research or paper that have been popping up, relatively unremarked, recently that this is the way to go to find if not a cure then a way of stalling the development of PD. Disgusting as it sounds I'd willingly be a guinea pig for faecal transplant - the trouble is I don't know that anyone is researching it in the UK.

silvestrov profile image
silvestrov in reply to pen1

Disgusting or not, faecal transplant was done on 3 patients who had continuous constipation problems and after the transplant, their Parkinson's went away to the point where other neurologists did not think the patients had PD. Sounds like a good idea to me.

12stargate profile image
12stargate in reply to silvestrov

silvestrov what is faecal transplant?

silvestrov profile image
silvestrov in reply to 12stargate

Taking faecal matter from a donor and replacing the faecal matter in your body. The fekalier, I looked it up online, has to be tested to make sure it has a normal distribution of bacteria. It is a good idea and if someone has constant constipation while having Parkinson's disease I would look into it.

silvestrov profile image
silvestrov in reply to 12stargate

thefecaltransplantfoundatio...

I am off to bed.....have a good day tomorrow.

BUZZ1397 profile image
BUZZ1397

Still waiting for my EGCG (?) to arrive but received a lb of powdered MP and started using it as a supplement to my routine C/L a few days ago. Mixing 1/2 tsps into warm pineapple juice. No harmful effect. Tasted a bit like raw peanut alone not in the juice. Not much effect at all either way. Hope that using the EGCG with it causes a noticeable benefit. If not I'll increase the amt. and see what goes on.

silvestrov profile image
silvestrov in reply to BUZZ1397

It is probably a good idea to not take EGCG with MP/levodopa, salmon oil and vitamin C, together with Sinemet. In order to test whether you respond to the combined therapy it needs to be taken all by itself. The amount of levodopa can be experimented with to see if there is a 'range' of response. Since I was previously taking large doses of levodopa daily (500 mg) without carbidopa, the first time I took the combined therapy I felt it immediately. Perhaps the large dose of levodopa was part of the reason for my response. But like everything with PD, there is no guarantee that people will respond the same way. It seems to be a ailment which eventually evolves into therapeutic trial and error.

12stargate profile image
12stargate

silvestrov Hi! So I am sitting here looking at a bottle of EGCG 1000mg, Mucuna Pruriens 500mg, Salmon oil 690mg and Vit C 1000mg. Is it ok to use that much Vit.C?

I start tomorrow morning, and I am excited!!

What time in the morning do you take your 'coctail' silvestrov?

And then again at 4 pm.

Thanks!!

silvestrov profile image
silvestrov in reply to 12stargate

Keep a level head about the therapy. Just see what happens....

Just to make sure you are taking what was specified in the article.

Is the EGCG 94%+ pure?

1,000 mg of salmon oil is required so perhaps you should double up on the oil. 1,380 mg total. I am not sure what effect more salmon oil will have on the absorption of EGCG.

I have extra capsules of pills I do not use and dump the old pills out and 'cut/guess' 1/3 of it into the empty capsule. EGCG requires acidity to be absorbed but how much?

Just try this once in the AM upon waking and see how you respond. With the salmon oil you will not feel any stomach upset. Other oils including state of the art purified cod liver oil cause gurgling....but not salmon oil.

When I combine my 98% pure 407 mg of EGCG (in a 670 mg capsule of green tea extract) I feel no stomach upset.

I hate to nitpick but the article was pretty specific...

Whatever happens you are all the better for keeping an open mind and being a trooper. It took me 2 months of experimentation and research to figure out this protocol.

Skål!

silvestrov profile image
silvestrov in reply to 12stargate

Tomorrow I would just try one dose in the morning and see how you feel. It is good to start slow. A 500 mg levodopa dose is pretty big and, with experimentation, a smaller dose may be required later in the day. Just start and take it slow...

Gypsyzebra profile image
Gypsyzebra in reply to silvestrov

Silverstrov hi!

My father wa diagnosed with Parkinson's disease 3 years ago.

After therapy with prescribed drugs his life became awful because of the side effects. No sence of smell, joy, no fillings at all.

We have been doing a reasearch for a while and put together a protocol which might work based on research. Since your knowledge is amazing I would be happy and thankful if you could give us a comment on that:

So protocole is:

7 AM - before breakfast

- kurkuma

- ginger

- cinemon

- lime juice

7.30 AM - before breakfast

- 500 mg mucuna 98% levodopa extract

- Salmon oil 1000 mg

- EGCG 400 mg

- Vitamine C 1000 mg

9.00 AM - after breakfast

- 25 mg Ibogaine HCL

- half tea spoon of mushroom Lion's mane

- half tea spoon of mushroom reishi

- Vitamine B1 250 mg

- Magnesium

2 PM - after lunch

- Ashwaganda - tea spoon

- brahmi - tea spoon

- Inhaling Boswellia

4 PM

- 200 mg Mucuna 98% levodopa extract

- Vitamine B12

7 PM - after dinner

- OMEGA 3

- Lion's mane - half tea spoon

- reishi -half tea spoon

- SYRIAN RUE (mao inhibitor) - 50mg

- Magnesium

9 PM - before sleep

- Melatonin pill

What do you think?

Many thanks!

Nejc

12stargate profile image
12stargate

silvestrov I am chickening out. I am going through something very stressful. Now may not be the time to do this.Because when I get right down to it, it stresses me out. Right now I do not need more stress.

The Omega oil is just fish oil from Norway. I thought it was salmond oil..

I don't know if the Green Tea exctract is 94 % pure. It says 98%TP, 50 % EGCG.

What does that mean?

I wish I had your knowledge. Are you a chemist??

I need to let this sink in a little more.

silvestrov profile image
silvestrov in reply to 12stargate

What brand of fish oil is it? I am not a chemist but most companies post the information about their oil ..... no problems with delaying the therapy because of a stressful situation. If you have anxiety I know a bunch of good anti-anxiety agents. Hang in there!

12stargate profile image
12stargate in reply to silvestrov

silvestrov I just posted on my fb page about anxiety.

I would love to hear your anti-anxiety agents!! :)

BUZZ1397 profile image
BUZZ1397

Received my order of green tea extract. Tried it out in combo w/salmon oil and MP last night at a time when I ordinarily would have taken some of my usual regimen that includes some C/L. Surprisingly it worked so well that after a half hour I felt better, but about an hour later I began to feel some heat and palpitations as usual when I have waited too long between C/L doses. Therefore, I medicated w/good result and slept. I tried the same this morning on an empty stomach right upon rising and again I felt PD relief but soon enough I got the body sense that my body was "needing" me to take the C/L. So, if MP in combo with green tea extract and salmon oil is to take the place of my C/L I believe I might need to carefully titrate my C/L to avoid a CNS revolt. There is probably a good reason not to abruptly cease C/L, like NMS or something so I won't risk that. I will test the possibility of titration over the next few weeks. If I find it is possible I will report back. Either way I will find out soon enough.

12stargate profile image
12stargate in reply to BUZZ1397

BUZZ1397 I found the same thing yesterday when I did the green tea regimen. After a while I needed l/c or C/L. I may try it again in a few days.

I too am thinking that I can't go cold turkey off L/C.

silvestrov profile image
silvestrov in reply to 12stargate

How did it totally effect you? Like I once posted, Parkinson's patients react so differently it is difficult to predict if something works or does not. Did you use 500 mg of levodopa?

12stargate profile image
12stargate

silvestrov If you mean 500mg of Mucuna, yes.

a few hours after a took the morning dose without the L/C, I started feeling really lethargic, and I knew I needed l/C. I took one tablet, and felt ok. I also took L/C with my 4 pm dose. Felt so wierd I decided I can not go off L/C cold turkey!

silvestrov profile image
silvestrov in reply to 12stargate

Could you do me a favor and post what type of EGCG/green tea extract you are using? Also, are you using salmon oil? I figured out how to not have to measure 200 mg of vitamin C every morning: children's vitamin C: Children's Vitamin C Chewable have 100 mg of vitamin c in 1 gummy.

pureformulas.com/vitamin-c-...

12stargate profile image
12stargate in reply to silvestrov

silvestrov I appreciate your mentoring.

This is what my bottle says:

Green Tea Extract

90 tablets

Green Tea Extract(98% TP 50 % EGCG) 1000mg

I am using Norwegian Fish oil

Thanks for the reminder about the children's chewable C.

silvestrov profile image
silvestrov in reply to 12stargate

I noted feeling a bit tired too after taking EGCG and found this on an anti-anxiety website:

socialanxietysupport.com/fo...

You mentioned you felt lethargy and if your PD symptoms did not worsen, then the levoopa was absorbed but the unintended consequence is sedation. Who knew? I certainly did not realize that this may happen. The dose of EGCG you are taking is larger than mine hence a more pronounced feeling of lethargy. I noticed it and about 1 1/2 hours later drank a dark cup of English breakfast tea - the most heavily caffeinated black tea, to counterbalance the effect. Did you PD motor symptoms worsen along with the feeling of fatigue? I cannot wait for the children's vitamin C to arrive because trying to measure the proper amount of C from a capsule is maddening. Plus, the article said some sugar actually helps the absorption of EGCG and the children's gummy has natural sweetener.

12stargate profile image
12stargate in reply to silvestrov

silvestrov I am blessed in that I do not have many motor dysfunctions. My only one is that I walk funny when i get dizzy.

Dizziness, dry mouth and constipation are my worst symptoms. And of cource, anxiety.

Please tell me how to treat constipation?

Thank you!!

silvestrov profile image
silvestrov in reply to 12stargate

I am looking into it. I am fortunate I do not have that problem. I am looking for solutions that are good for constipation and PD. Nothing else is a good solution.

silvestrov profile image
silvestrov in reply to 12stargate

I think I may have found something that works for both constipation and Parkinson's disease: Psyllium Husk (Isabgol) (Plantago Ovata:

amazon.co.uk/Psyllium-Husk-...

A randomised clinical trial to evaluate the effects of Plantago ovata husk in Parkinson patients: changes in levodopa pharmacokinetics and biochemical parameters

Conclusions

:

"Plantago ovata husk administration caused a smoothing and homogenization of levodopa absorption, providing more stable concentrations and final higher levels, resulting in a great benefit for patients."

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

In so many words Plantago Ovata will decrease the frequency of on/off syndrome associated with use of levodopa/carbidopa.

It looks like a winner and I would certainly give this a try.

Rich

12stargate profile image
12stargate in reply to silvestrov

silvestrov thank you so much Rich!!! :)

12stargate profile image
12stargate in reply to 12stargate

silvestrov I just ordered it!! :)

silvestrov profile image
silvestrov in reply to 12stargate

Great! I did a little further research about the relationship between vitamin C and levodopa and the following study notes that 200 mg of vitamin C "can improve LD absorption in elderly PD patients with poor LD bioavailability." In other words, to improve levodopa absorption you should take 200 mg with every dose of levodopa/sinemet regardless of what it is.

The effect of ascorbic acid on the pharmacokinetics of levodopa in elderly patients with Parkinson disease.

ncbi.nlm.nih.gov/pubmed/156...

silvestrov profile image
silvestrov in reply to 12stargate

Here is an interesting article about dry mouth:

breezecare.com/mediacenter/...

12stargate profile image
12stargate in reply to silvestrov

silvestrov Very interesting indeed. I have dry mouth, only the sticky kind. And it is aweful, so say the least.

I am not ready to buy the product yet. And I will try EGCG before I do.

As always, Silvetro, thank you. This was just what I needed.

I did buy a bottle of Aloe Vera to drink from Amazon.

:)

Today I went to Whole Foods, and purchased several 'Superfoods.'

I believe some of our symptoms can be alliviated by the right foods!

I will let you know when I figure it out :)

silvestrov profile image
silvestrov in reply to 12stargate

Another constipation article.

Use of probiotics for the treatment of constipation in Parkinson's disease patients.

CONCLUSION:

"This pilot study showed that a regular intake of probiotics can significantly improve stool consistency and bowel habits in Parkinson's disease patients."

ncbi.nlm.nih.gov/pubmed/215...

The EGCG product they mentioned for dry mouth is:

camellix.com/products/might...

BUZZ1397 profile image
BUZZ1397

Sure Sylvestrov. Salmon oil is vital choice -wild alaskan sockeye salmon oil (omega 3 600 mg, EPA 240 mg, DHA 220 mg). Green tea extract is Swanson superior herbs-TEAVIGO brand- standardized 90% EGCG, caffeine free (150 mg EGCG).

BUZZ1397 profile image
BUZZ1397

So, I'm done experimenting with MP and conclude it is useful. As the raw material source for Leadopa, MP has earned a place in my daily regimen. But I won't quit taking CL due to the benefit of CL's portability. If I was completely home bound I could see not needing CL.

I start every day (until something better comes along) with half a cup of warm pineapple juice with 3/4 tsp of MP stirred into it and with that I swallow a capsule of EGCG and my vit D and a capsule of salmon oil. After about half an hour I also take half a tab of 25/100 CL and my capsule of GABA-plex. This routine has improved the duration and the stability of my level of dopamine out to about 4 hours depending on how successful I am at avoiding processed protein. In the mornings I consume none, just an apple and my vegetable/fruit puree drink and some ginger snap cookie if needed. The cost of Dole pineapple juice is a bit high but worth it as a liquid for mixing up an MP drink. Well that is all I have to say about me and mucuna pruriens.

BUZZ1397 profile image
BUZZ1397

Gosh! This post has longevity, covering so many aspects of our struggle to avoid synthetic Rx. I am very pleased that my curious nature has engaged so many of you and Silvestrov. This has become a go-to soource of information about how to use mucuna pruriens. Amazing! :)

SuperMNew profile image
SuperMNew

Hi Buzz! I hope you ordered the EXTRACT! I reviewed and ordered Banyan's mucuna once, but it was the powdered bean that I received and tried. It did not work for me. it's just the bean all ground to powder. If you are suffering from RLS or Parkinsons, you need the EXTRACT! The extract is as powerful as prescription medication, but Mucuna does not drive you into augmentation. It is natural. I take 1/2 tsp. of the pure 100% pharmaceutical grade mucuna pruriens as found at the NutriVita website. It's the purest extract I have found anywhere. Here is the web address I use: nutrivitashop.com/products/...

God bless!

BUZZ1397 profile image
BUZZ1397 in reply to SuperMNew

Thank you. I am using an extracted form of mp these days. Again, gosh this post has longevity. Source naturals is the brand, it is supposed to be standardized 100 mg levodopa per capsule. But I suspect they are not evenly packing the capsules. Some are stronger, some are weaker but it works ooout.

SuperMNew profile image
SuperMNew

The capsules can be very expensive, and they take longer to act once you've taken them. I take the Mucuna Extract powder, and it goes to work withing 15 to 20 minutes, depending upon what I have in my stomach that the Mucuna has to work around. I took the 98% capsules for a while, but if you need them every night to sleep and to give relief from the shaking, it gets quite expensive. I take the powdered Extract, 100% pharmaceutical grade. nutrivitashop.com/products/...

BUZZ1397 profile image
BUZZ1397 in reply to SuperMNew

I want to know, since you mentioned sleep, how long can you sleep on average between doses? I have the darnedest problems being able to sleep a whole night. My poor MS stricken wife calls me over the monitor every once in a while for re-positioning or some other need that I can meet nights. Oh I wish I was able to sleep longer during the times she is not in need. I curretly add a tab of 25/100 C/L to my MP dose at bedtime since the C/L has that side-effect of drowsiness but that only helps me fall asleep. Staying asleep for more than 3 hours is a challenge. I awake hot, sometimes sweating and have to dose again sitting up on the headboard for about 15 minutes while that settles to the stomach's bottom before a get horizontal again. What a pain in the butt!

AmyLindy profile image
AmyLindy

I wish this post were on a document I could save- great stuff and references! Thank you 🙏🏻

Mucuna123 profile image
Mucuna123

Thank you so much. Are you taking just mucuna or c/ l +mucuna?

BUZZ1397 profile image
BUZZ1397

I have some CL that I use only if my MP his late arriving in the mail which has happened twice over the last two years

Banyan is only “American” by name. As far as I can see, most if not all of their products are sourced from India. I don’t think Mucuna is grown in USA. That being said, they are indeed a very solid and safe supplier. I found that I have to use two tablespoons of powder with warm water and it works in 30 minutes. Good luck to you.

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