Amino acids with Macuna pruriens - Cure Parkinson's

Cure Parkinson's

26,504 members27,915 posts

Amino acids with Macuna pruriens

Littlerody profile image
78 Replies

Anyone using the amino acid therapy with the mp? Any advice would be greatly appreciated. Thanks Judy

Written by
Littlerody profile image
Littlerody
To view profiles and participate in discussions please or .
Read more about...
78 Replies
silvestrov profile image
silvestrov

I have read about the protocol and its basic premise is to balance the levels of dopamine and serotonin and replenish sulfur amino acids. It is a difficult balancing act to do without testing protocols and then adjust the amount of supplements accordingly. I don't want to be discouraging but outside of a clinic it is a difficult therapy to achieve.

Just to be sure here is the link to Amino Acid Management: ncbi.nlm.nih.gov/pmc/articl...

If you are interested I have developed a method to absorb levodopa from mucuna pruriens using anti oxidants and fatty acids. It can be done at home and is inexpensive.

Rich

12stargate profile image
12stargate in reply tosilvestrov

silvestrov I would love to know how you do this. Is there way to get off of levodopa carbidopa using mp?

silvestrov profile image
silvestrov in reply to12stargate

I am not certain but I think I may have posted this for you before??

Levodopa + carbidopa = sinemet

Levodopa can be extracted from MP in its pure form, 99%+ levodopa.

Couple this with EGCG - a polyphenol from green tea. Like sinemet, EGCG is a decarboxylase inhibitor. Carbidopa and EGCG inhibit the aromatic l amino acid decarboxylase enzyme thus preventing the body from converting levodopa into dopamine so it can enter the brain and central nervous system.

The problem with EGCG is it is not well absorbed. In a German study the researchers concluded that EGCG is best absorb is to take it on an empty stomach upon waking and at 4:00 PM. It also has to be taken with 1,000 mg of salmon oil and 200 mg vitamin C. No calcium, milk or hard water can be taken with EGCG because they will inhibit absorption. EGCG must be at least 94% pure or better.

EGCG decarboxylase inhibitor: ncbi.nlm.nih.gov/pubmed/113...

The EGCG absorb-ability study: ncbi.nlm.nih.gov/pmc/articl...

EGCG as an MAO-B inhibitor: ncbi.nlm.nih.gov/pubmed/204...

So substitute the exact amount of levodopa you are taking with pure levodopa derived from mucuna pruriens and combine it with 94% pure levodopa with 1,000 mg of salmon oil and 200 mg of vitamin C.

Upon waking and at 4:00 PM.

The PD drug entacapone inhibits the comt enzyme (Catechol-O-methyltransferase) thus preventing the body from converting levodopa into dopamine so it too, like carbidopa, and target the brain and central nervous system.

Another component of green tea, quercetin, is also a comt inhibitor. Like EGCG it is poorly absorbed so it must be taken with the pineapple enzyme bromelain. Bromelain greatly increases absorption of quercetin.

Many PD patients take 3 or 4 doses of levodopa a day and, with the EGCG+ protocol, the morning and 4PM doses could be substituted.

With the quercetin/bromelain combo the late morning and late evening (if needed) can be substituted.

Quercetin as comt inhibitor: ncbi.nlm.nih.gov/pubmed/127...

As a comment, EGCG is a moderate natural MAO B inhibitor but it has several advantages over alternatives. EGCG has one of nature's most powerful antioxidants and scavenges free radicals; it is also an iron-chelator and has antimicrobial activity. Brain iron deposits are a known pathology for PD because it leads to the production of hydroxyl radicals and nerve degeneration.

Helicobactor pylori, resides in the stomach and is a known cause of gastric ulcer, cancer and GERD (which many PD patients suffer from), makes the drug levodopa harder to absorb and this is a confirmed problem for PD patients.

parkinson.org/find-help/blo...

EGCG can inhibit the toxins of H. pylori: ncbi.nlm.nih.gov/pubmed/156...

So can quercetin: ncbi.nlm.nih.gov/pubmed/186...

Constipation is a problem for PD patients and the bacteria Clostridium difficile, C. diff, is a known cause:

the-scientist.com/?articles...

It just so happens that EGCG is toxic to C. diff: ncbi.nlm.nih.gov/pubmed/265...

I do not have constipation but did EGCG affect my gastrointestional tract? Yes. Rather than being constipated my Parkinson's symptoms included hemorrhoids and, thankfully, within 3 days of taking EGCG+, they went away. Good riddance!

Anxiety is a problem for PD patients and EGCG is a natural anxiolytic (anti-anxiety) agent:

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

In conclusion, EGCG is a moderate decarboxylase inhibitor, a moderate MAO-B inhibitor, a powerful antioxidant, a powerful iron-chelator, an anxiolytic agent and effects multiple pathogenic bacterial strains (including the bacteria which causes tuberculosis).

I hope this helps and let me know if you want more info.

12stargate profile image
12stargate in reply tosilvestrov

silvestrov Thank you ever so much!! Let me digest this.my ECGC arrives tomorrow:)

silvestrov profile image
silvestrov in reply to12stargate

When I first did this therapy it felt like a warm ball of light was floating in my head -very pleasant. The first several days have the strongest effect then it becomes 'normal'. I hope you have a positive response like I did.

HeartSong profile image
HeartSong in reply to12stargate

12stargate, please let us know if you experiment with this and what the results are.

whack-a-mole profile image
whack-a-mole in reply tosilvestrov

Or, you can streamline the process a bit and simply wait for the Canis lupus arctos to howl 3 times, quickly stir 1 Tbsp of crater dust from the planet Kronos into 8 oz of breast milk from the Baiji White Dolphin - drink quickly - and you're set! (don't knock it until you try it)

Littlerody profile image
Littlerody in reply towhack-a-mole

That's kind of how it read lol

Tribselyov profile image
Tribselyov in reply towhack-a-mole

I always enjoy your comments

Littlerody profile image
Littlerody in reply tosilvestrov

Can you come to my house and medicate me lol. I probably did post this when I found out about mp. I have a bag of 25% pure supposedly mp and a scale sitting on my table for the last month. I just walk by it and dream lol. My next post will be looking for stem cell receivers. Thanks once again. Be patient with me I had a lot of confidence in the neurologist I have been with for 7 years. But you know what none of them have an answer for us. Judy

Donzim profile image
Donzim in reply tosilvestrov

Sylve, old boy....that was yeomans work! BUT too much for my brain.😂. I need Sylvestrov For Idiots. Are you saying that what we want to do is inhibit comt? I am sure you will be aghast, after reading some of my posts that I could ask such an ignorant question. But like the whole cholinergic thing, I just don't get it. i am confused between the actual good that choline does and the cholinergic aspect of things like Benedryl.

Back to the subject: We used entacapone with the c/l to extend until it stopped doing so. Don't know the chemistry of that re comt.

need to adapt the concept to Dons needs...cherry picking so to speak as he also has other issues than PD now. I don't think he could go whole hog into a major change anymore so I would like to do some things but maybe not all if I can understand what you say. Can you break it down to 1)2)3) for us lesser minds? Maybe that way I can say, 'yes, we can do that but not this' and get some relief if not all. Maybe that doesn't work but i have to ask.

So far, what I get is keep taking quercetin but add ECGC. Take the latter with bro melanin. Actually take bromelain w quercetin as well.

We use a LOT of Theanine as an anxiolytic (400mg 3x + 200+100). Is it Theanine or ECGC in tea which does this or maybe both.

Have used quercetin for years and there is a version which is much better absorbed than regular q....alpha glycosyl..isoquercetrin from Integrative Therapeutics. A really good firm with interesting products. That's where I get lavender oil caps(the bomb!), Glycation Manager, and just ordered something for sinus (for me) that I have high hopes for.

Maybe in writing this I cleared up some questions I had but maybe not.

Read PubMed on ECGC on heart and that's GOOD since Don lost 80% function from taking Mybetriq while having edema (a dubious choice by the dr), resulting in a UTI resulting in sepsis, resulting in kidney failure and having been left overnight on a fracture bedpan after, at hospice....he can use some help with his heart but it's now much harder to swallow so have to be selective. He is home now so can still whip up smoothies. Put quercetin in that...have no idea what dose to aim for. Got used to using large ones when he had brown urine in the distant past...probably due to dehydration from too much urination. Found an Army medical article about how US soldiers in the Middle East are routinely given quercetin IV when they come off the field because the combined heat and weight of their gear causes too rapid dehydration.

found a source for bulk supplements which in making smoothly helps a lot but still open a lot of caps!

Didn't mean to get into all that....sorry!!!

Can't wait to hear from you...always love your posts even when they remind me of my high school math teacher who was so smart, she was too smart...we could only understand part of what she was teaching. Btw, her name was (I am not making this up), Miss Smart.

silvestrov profile image
silvestrov in reply toDonzim

I think it is possible to make the therapy liquid in order for Don to swallow it. Let me summarize what I wrote. Levodopa and carbidopa is the standard Parkinson's drug called Sinemet. Caridopa inhibits an enzyme which prevents the body from converting levodopa into dopamine so the levodopa targets the brain and central nervous system. This combination reduces the required dose of levodopa by 75% and cuts down the the major side effect on levodopa - nausea.

EGCG also inhibits the same enzyme as carbidopa - though to a lesser extent. So by taking EGCG with pure levodopa (as derived from the mucuna pruriens plant) more levdopa will be targeted for the brain and central nervous system.

The problem with EGCG is it is not easily absorbed but when combined with 200 mg of vitamin C, 1,000 mg of salmon oil (on an empty stomach with no calcium, milk or hard water - which contains minerals) it is better absorbed.

Azilect (rasagiline) and Deprenyl (selegiline) are commonly prescribed for Parkinson's disease because they are MAO-b inhibitors. As we age the MAO enzyme destroys certain brain neurotransmitters including dopamine and MAO-b inhibitors help to prevent the breakdown of dopamine.

EGCG is a moderate MAO-b inhibitor - not as strong as Azilect. So, in addition to being a decarboxylase inhibitor, it is an MAO-b inhibitor.

Absorption of levodopa in the stomach is difficult because many patients have Helicobacter pylori infections which can cause GERD. EGCG has the ability to inhibit the toxins from H. pylori which will aid the the absorption of levodopa.

Parkinson's patients also have problems with constipation and a cause is the bacteria Clostridium difficile. Dr. Borody (Australia) has performed faecal microbiota transplants on 3 PD patients (perhaps more) and the patients symptoms went away to the point where other neurologists could not identify the patients as having Parkinson's. EGCG has been shown to have an inhibitory effect on the virulence of C. diff. I do not have constipation but another gastrointestinal problem: hemorrhoids. And after EGCG supplementation they thankfully went away. At this point I did an internet search to see if EGCG has effect on C. diff or hemorrhoids and yes on both accounts.

The EGCG has to be at least 94%+ pure to be totally effective but with Don's swallowing problem perhaps a liquid form of EGCG will work:

vivaherbals.com/

As for the dose, well, this is a therapy in progress so doses have not been determined scientifically nor do I have the capability to work out the metrics so trial and error rule the day. The EGCG (green tea extract) I take is 98% pure:

amazon.com/Extract-capsule-...

EGCG has anxiolytic activity but theanine is by far the stronger anti-anxiety agent. I too take theanine and since it and EGCG are components of green tea we know they are safe for consumption.

The article I referenced to about the absorb-ability of EGCG also mentioned salmon oil and vitamin C. There are so many studies showing fish oil being good for PD it is a 'no brainer' to use this for PD patients. Obviously salmon oil comes in liquid (non-capsulated form) and it added with the (liquid) EGCG might work:

vitalchoice.com/shop/pc/vie...

200 mg of vitamin C melts easily in water so adding this is not a problem. Levodopa only comes in pill or power form and I am not sure how well it dissolves in water. Though a liquid form of levodopa is being developed and it requires a pump for it to be delivered under the skin:

parkinsons.org.uk/news/8-ja...

In summary, EGCG + levodopa + salmon oil + vitamin C should be taken upon waking and at 4 PM preferably 1 hour before a meal. I have tried other fish oils and they upset the stomach whilst salmon oil does not.

The drug entacapone, a COMT inhibitor, has similar action to carbidopa - it inhibits a different enzyme which prevents the body from converting levodopa into dopamine so it is targeted for the brain and central nervous system. Quercetin is also a COMT inhibitor but is better absorbed with the enzyme from pineapples - bromelain.

Thank you for posting the better form of quercetin - Alpha-Glycosyl Isoquercitrin because this may make the quercetin/bromelain combination unnecessary.

PD patients take multiple doses of Sinemet, 4 doses is not unusual and the EGCG + method could replace the early morning and late afternoon dose(s). This leaves the (near) lunch time dose and the evening dose. At least 1/2 hour to having lunch combine MP levodopa with Alpha-Glycosyl Isoquercitrin and bottoms up. When I speak of pure levodopa this is what I mean (not a mucuna powder with levodopa - PURE levodopa):

nutrivitashop.com/products/...

Not that I am recommending this brand (it might be great?) but the emphasis is on the purity of the levodopa. By administering pure levodopa you will cut down on the size of the dose because the other parts of the plant are absent. Hence it is easier to swallow. Now that I think of it this powder levodopa might dissolve in water?? Also, if the dose of levodopa (Sinemet) is 100 mg + 25 mg carbidopa, then use 100 mg of natural levodopa + EGCG, etc.

Let's go back to Helicobacter pylori. Quercetin, like EGCG, To quote an article about quercetin and H. pylori:

"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."

Translation: Oral administration of quercetin decreases HP infection and reduces inflammation and the decay of fat into free radicals.

Both EGCG and quercetin are powerful antioxidants and they can prevent oxidation - biological rusting. Ever watch an old car slowly rust and fall apart? That is what happens when free radicals are set loose in the brain; they 'rust' nerve cells and destroy them.

Sorry about the lengthy response but it is unavoidable. I often am in a rush, I have too much on my plate, and my responses can be fact heavy - I realize this, and if you need more clarification it would be my pleasure. The EGCG/quercetin is experimental and is open to adjustment.

There is a lot in your response and, again, I am short on time (as usual) so if you want to re-post any questions, please do so.

Rich

Donzim profile image
Donzim in reply tosilvestrov

Thanks so much! When I read the Marty Hinz article I almost dropped to the floor. We have done practically everything one can do and reading that brought it home that I always knew I was operating on a smattering of knowledge, and ability to grasp the big picture even when I don't get the details and knowing that I was missing all the blue pieces in the puzzle. I don't interpret his approach as a cure but certainly a better way to manage the disease and the c/l. Poor Don has suffered from intense nausea off and on daily for 12 years and it always threw him into panic mode. A cardiac doc whose father had PD told us years ago that we hD to get the panic under control because each attack caused the tissues of the heart to harden. We were never able to do that pharmaceutical lay and the reason he had rTMS. Now we don't travel for that so we resorted to massive doses of Theanine and lavender oil which help hugely. Now he has major amyloidosis from all this...hardening of the heart tissue and it is terminal from loss of heart tissue as formerly described. Still, people live with partial hearts. Living with PD is something else.

I have always tried to get blood and plasma levels on certain things....had several Spectracell tests

Hinz is an hour away!

Donzim profile image
Donzim in reply toDonzim

I forgot...I don't know how to convert the c/l. He is on Rytary which for some reason doesn't use the same language re dosage. I am reducing that as he is now very thin and not ambulatory. This is complicated.

Do think testing is a good thing. Short of going to Hinz, I can't figure how to do this, other than just start giving him EGCG, more Nac and isoquercetrin. Don't know how to handle the serotonin.

recently bought an Orthomolecular Products brand CereVive -a combination of a number of those things mentioned which I suspect is geared toward the treatment we are discussing. It's a combo of a number of the ingredients but not all or in the ratio discussed in the article. Of course, Hinz et al did say it was a highly individual thing when it comes to dosing. I am convinced that dons persistent nausea comes from the imbalance Hinz speaks of.

Just some trivia, things I found helpful:

High dose niacin stops hallucinations.

Phosphytidyl serine is a must.

Isoquercetrin is almost a cure all.

Coconut oil gives energy but believe it does this for people who cannot access energy from carbs and must rely on fat...that would make it a metabolic prob.

Vit. C is wonderful

DMSO IV is a CNS anti inflammatory. Maybe the best! But The sulphur smell will stay in your carpets, furniture and curtains forever. They will smell you coming.

Fructose is a problem.

CoQ 10 in large doses has been our friend since 2003.

Chiropractic helps put one back into sync if there has been muscular overcompensation.

Glutamine is a wonderful thing for the gut and constipation.

Adrenaline is not our friend.

Lavender oil caps and Theanine are fantastic for anxiety.

Hyperbaric O helps a lot. IV glutathione helps but just like rTMS, it doesn't last.

Bulk supplements help with smoothies.

Zandopa was a good thing when we were trying to delay taking c/l....in spite of what the head of neurology in the movement disorder dept at Emory in Atlanta said.

Supplements are a good thing, in spite of what the head of the movement dept. at Shands in Gainesville, Fl. said.

Vit. E is our friend but almost impossible to give w swallowing problems.

The Japanese are brilliant for among other things, putting fish oil in all baby food and more, figuring out how to microscopically encapsulate unpalatable stuff into powder form. Waiting for it.

Sea buckthorn is fantastic for a lot of things. The Siberian kind.

Tea tree oil is good...straight not diluted on the skin.

Electrolytes daily are a must. PureCaps powder.

Zinc carnosine is the only thing I have found to control h pylori other than yogurt which I get tired of eating.

Ashwagandha is good as it is an adaptogen.

Epsom salts baths are good...the absorbed magnesium relaxes the muscles.

Any exercise which strengthens the core or going neck deep in the pool which does that is good.

Big and Loud program is good.

Ever hear of EMST device for improving speech, breathing and swallow. Look it up on YouTube. Trying it next week as soon as Don's aspiration problem is gone.

We must not forget mustard plasters for chest infections.

Crushed fresh ginger in a teaspoon of olive oil did what no med could do when Don has a deadly (I mean that literally) aspiration event but couldn't cough up the phlegm. Got that from the Haitian aide we use and I can tell you it works!

Putting the sea buckthorn oil in the vaporizer did also.

Until those two things were used, he was dying and that is no exaggeration. I called the children to say that daddy wouldn't last the day. He had been unresponsive for 48 hours- not sleeping, unresponsive- and after the vaporizer trick, he opened his eyes and looked around. Then we used the ginger. Half an hour later he wanted to know what was there to eat. We fed him carefully but the next morning he got up and ate oatmeal, toast, scrambled eggs,sausage and cantaloupe. We have kept up both treatment abut particularly the ginger.

I mention this as many PD era have aspiration problems and are too weak to cough.

Any suggestions on the salmon oil?

glenandgerry profile image
glenandgerry in reply toDonzim

Donzim and silvestrov you've given us information overload! But some great tips here nevertheless.

Which salmon oil do you recommend btw?

How old is Don and for how long has he had PD? My hubby is 62 - been diagnosed 11 years. We use a lot of supplements many of which are the same as the ones you give Don (thanks for the spreadsheet you emailed btw) but just wanted to ask - what benefit is derived from using tea tree oil directly on the skin? Also why is fructose bad?

What do you mean when you say you don't know how to handle the serotonin?

We're still experimenting to see which supplements work best but it's a long, arduous and expensive hill to climb, hence why my hubby is still taking sinemet as it is at least one thing we do not have to pay for as it's on the NHS. We dabbled with Mucuna for awhile but couldn't find a product with a high enough percentage at a low enough price so have stopped using it now.

Once again, thank you both for all your research, tips and advice....please keep all the info coming!

silvestrov profile image
silvestrov in reply toglenandgerry

Only unrefined Salmon Oil, preferred sockeye salmon oil is best. Here is an article from the Huffington Post:

"Wild Pacific salmon, especially sockeye salmon, have the highest astaxanthin content. However you’d have to eat about 6 ounces (165 grams) daily to get a 3.6 milligram dose. [11] Since studies show that doses greater than that provide anti-inflammatory benefits, I always suggest an astaxanthin supplement."

"A 2007 study analyzed several popular antioxidants and their antioxidant power. [10] This study found astaxanthin was 6,000 times stronger than vitamin C, 800 times stronger than CoQ10, 550 times stronger than green tea catechins and 75 times stronger than alpha lipoic acid."

huffingtonpost.com/suzy-coh...

Astaxanthin and esters thereof for protecting neurocytes and treating Parkinson's disease

google.com/patents/EP186732...

Running short of time here and will have to continue this later.

silvestrov profile image
silvestrov in reply toglenandgerry

In terms of fish oil, sockeye salmon is the best because of the astaxanthin it contains but there is another oil containing astaxanthin which I am going to experimentally substitute: Krill oil.

nootriment.com/krill-oil-da...

In terms of 5HTP, a precursor to serotonin, is a supplement to be handled with kid gloves because excess use can lead to serotonin syndrome:

mayoclinic.org/diseases-con...

Levodopa is a precursor to dopamine and tryptophan is a precursor to 5-htp.

Tryptophan > 5-HTP > Serotonin > Melatonin

And there is a relationship between tryptophan and PD:

L-tryptophan supplementation in Parkinson's disease.

ncbi.nlm.nih.gov/pubmed/274...

Like other amino acids tryptophan should not be taken with levodopa/sinemet because it competes for absorption when crossing the blood brain barrier. It is best taken at night before bedtime. In addition to taking pure tryptophan, Evening Primrose oil is also high in tryptophan:

what-when-how.com/parkinson...

More later....off to work....

silvestrov profile image
silvestrov in reply toglenandgerry

The only reason I could find to use tea tree oil for PD is Seborrheic dermatitis:

scielo.br/scielo.php?pid=S0...

SKCW profile image
SKCW in reply toDonzim

This is so kind of you to write this helpful, hard-won advice. I am keeping this to help my mom. I am at the beginning of the whole process with her. I am leaning toward the Mucuna Pruriens option at the moment, because she is slower, but functional and has no tremor. You said you found it helpful? It is confusing because the mainstream doctors/associations disregard.

Warm Regards,

Sarah

Donzim profile image
Donzim in reply tosilvestrov

Don't see anything on ECGC dosing. I have a couple of bottles of decaf green tea extract caps with 70% ECGC 100mg. But don't know what to do with it.

silvestrov profile image
silvestrov in reply toDonzim

In the following article the author describes the factors which help EGCG absorb-ability which includes: 94%+ pure EGCG with 200 mg vitamin c, 1,000 mg salmon oil. Everything, including the levodopa, need to be taken upon waking with no calcium, milk or hard water (which contains minerals that contain minerals inhibiting absorption).

The article:

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

"One oral dose in the morning after an overnight fasting period [17,18] at least 30 min before breakfast, and a second dose in the afternoon with fasting period of at least 4 h, at least 30 min before dinner, seem to be necessary to reach high plasma levels of EGCG."

Hard Waters

"Since elevated concentration of calcium, magnesium and other metals in water would affect EGCG absorption [11], it is advisable to soften drinking hard waters with commercial available methods."

Vitamin C

"Ascorbic acid alone may improve EGCG bioavailability [6,18] by preventing oxidation, the addition of sucrose may even accentuate this effect by enhancing its absorption in the digestive tract."

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

As for the dosage in this still experimental therapy EGCG dosage is to be determined. In lieu of not knowing the dose I purchased the largest, 98% pure dose of EGCG I could buy:

It contains 670 mg total capsule size with 409 mg of EGCG.

Donzim profile image
Donzim in reply tosilvestrov

Have you googled Werner hunstein, the man who experimented on himself re this? If not, you are in for a reading treat. I was particularly interested because his condition was not PD but amyloidosis which is what Don has along with PD.

Re Hinz....hmmm, maybe not. I am sure he is at the forefront of the amino acid stuff but he was suspended twice from practicing medicine and fined due to being bipolar and not taking care of business. Also taken to task over misdiagnosing or wrongly prescribing for 32 patients. He recently went on a cursing rant on an online forum in response to some pretty mild questions and had to be cautioned by the site manager. I hate it when brilliance gets side tracked but we already went to one bipolar dr in Florida and spent a fortune. The man needed to be institutionalized or at least medicated. At this stage, I will try to work out a formula myself, with help. I can't stop the Rytary c/l and reduce it to pure levodopa in dons frail condition so wonder if I can add this stuff on top?

silvestrov profile image
silvestrov in reply toDonzim

Glad to know that about Hinz. I have been in contact with people on amino acid management therapy and it is not an easy therapy. The major complaint is nausea and anxiety caused by excess levodopa.

Will check into Werner hunstein and look when I have some time, say Sunday. Also, " I can't stop the Rytary c/l and reduce it to pure levodopa in dons frail condition so wonder if I can add this stuff on top?"

Again, will look into it Sunday. It is midnight and I have a 13 hour day tomorrow.

silvestrov profile image
silvestrov in reply toDonzim

Is Don on any heart medication(s) (beyond his PD meds?) Plus what is the total list of meds he is on?

Donzim profile image
Donzim in reply tosilvestrov

metoprolol, lasix, potassium, synthroid only pharmaceuticals....lots of supplement. got a letter from one of the

authors of the Hunstein study on EGCG, salmon oil, etc. who did the genetic part. if you want, i can send it to you via email. it is exactly the same dosing as the one we are discussing but used for cardiac amyloidosis. can't exactly get the connection beyond the fact that they both involve plaque. don't know how the regimen would lessen the use of c/l unless plaque causes symptoms which require more c/l and regimen decreases plaque, thereby reducing need for c/l. one would think this would take a while if so. tell me if you want it emailed....too long and specific to put on this site.

silvestrov profile image
silvestrov in reply toDonzim

Sure just send me a message through this website - the message goes strait to my email account.

Donzim profile image
Donzim in reply tosilvestrov

Ordered it. Still not sure re necessity of salmon oil. Study seemed to reject others mainly cod liver because of its characteristics. Now with a lot of quality products are made from anchovy maybe the idea of salmon is passé .

silvestrov profile image
silvestrov in reply toDonzim

I tried 3 different oils for the EGCG therapy: A 900 mg dose of fish oil high in DHA and EPA - it made my stomach gurgle and feel queasy. I used state-of the-art molecularly distilled cod liver oil and there was some minor discomfort with its use. 1,000 mg of salmon oil caused no discomfort and I only felt the effects of the EGCG and levodopa. So I obviously favor using the Salmon oil.

Donzim profile image
Donzim in reply tosilvestrov

Getting it together. What dose do you think for piperine ?

silvestrov profile image
silvestrov in reply toDonzim

The people who clinically test piperine and the manufacturers of piperine are not on the same page. It is recommended to use piperine at 5 mg doses, three times a day. I have only been able to find 10 mg capsules of piperine. 15 mg a day is the recommended maximum dose but I have noticed that resveratrol supplements are augmented with piperine for increased absorption at a dose of 20 mg a day. I just don't get 'it'. How everyone can get it wrong.... I tried piperine + EGCG +++ and it (piperine addition) upset my stomach more than any of the fish oils I tried. Finding it at 5 mg dose is desirable and if you find it let me know.

enjoysalud profile image
enjoysalud in reply tosilvestrov

Rich, I greatly appreciate your research and that you site where you got your information. QUESTION: you mention that you use THEANINE for anxiety. WHAT BRAND and how much during the day? My son has anxiety and will NOT go on prescription meds. Thanks!

Donzim profile image
Donzim in reply toenjoysalud

Any brand will be Suntheanine as it is patented. My husband has severe anxiety and we use large doses..400mg every 3-4 hrs during the day, tapering off to 200 at dinner and 100 at bedtime. More at bedtime keeps him awake all night. We also use Integrative Therapy lavender oil caps for calming down..1-2 as needed. Fantastic. All that panic can develop into amyloidosis of the heart....it did in our case and its terminal.

silvestrov profile image
silvestrov in reply toenjoysalud

Donzim gave good advice and I would follow his recommendations. I use less theanine because I use it in combination with baicalin, niacinamide and magnesium. Magnesium is a chill pill which too can calm (and focus) the mind. Magnesium works well with theanine.

enjoysalud profile image
enjoysalud in reply tosilvestrov

Thank you, Silvestrov. I am so sorry that you have PD, but grateful that you research, that you post, and though a toll on your time answer questions. Bless you!

silvestrov profile image
silvestrov in reply toenjoysalud

It's my pleasure to respond to posts. While researching my PD documentary I must have read about 2 - 4 thousand articles and it (sometimes) sounds like I swallowed a few too many books. As for the PD, I am doing well and feel fortunate. Prior to exhibiting symptoms I watched my father go through standard therapy; dopamine agonists made him into a zombie whilst entacapone gave him bad dyskinesias - he quit both therapies. In addition, I had an adrenal problem treated by an orthomolecular doctor (a doctor who uses high doses of supplements like drugs) and I learned how to use supplements by studying his methodology. It was remarkable. The doctor gradually placed me on progressive doses of high tech vitamin C until I was taking over 23,000% per day for months (plus many other vitamins, fatty acids.....) This is why I post ad nauseam about vitamins, minerals, etc... To put it simply, they changed my life and I am just passing on the info.

enjoysalud profile image
enjoysalud in reply tosilvestrov

What PD documentary? Can I access it?

Thank you!!!!!

silvestrov profile image
silvestrov in reply toenjoysalud

What I need to do is update it then purchase a vimeo professional site so I can post it in sections. It is a bit on the long side, over 4 hours long, so it would be better to have it in sections so people can watch it at their leisure. It has been a bit of a long haul to complete the project. I will let you know when it is online.

Tryguy profile image
Tryguy in reply tosilvestrov

Just an fyi that I have viewed several of the installments - Thank You!

stevie3 profile image
stevie3 in reply tosilvestrov

You did say at some point you would post on your anti-oxidant regime - NAC etc. I am looking forward to it - I copy many of your posts and save them in my 'useful' folder. I do appreciate your sharing the research you do.

silvestrov profile image
silvestrov in reply tostevie3

For my money the most important antioxidant I consume is CoQ10. Let me give you some context: About 5 years ago (or so) I started to feel a non-specific sickness which included depression, nausea (lots of it), my food had lost its flavor and later I realized my sense of smell was compromised; I slept poorly, had tons of anxiety, and then I could watch my right lower eyelid start to shake on its own. My chest had horrible tremors and my right hand was starting to shake a little. I was weak and had no energy to go walking - my favorite exercise. Plus there were other symptoms too. Years ago I took the amino acid tyrosine for depression - an unrelated condition, and always had a bottle in my medicine cabinet. So one afternoon I took a capsule for depression and I slept better than I had in months and awoke with a startling realization: I had some form of PD. My father had PD and I know the symptoms well but could not see the forest from the trees - until I took the tyrosine. Tyrosine is not used for PD patients because most have too much neuro-degeneration to convert tyrosine to the amino acid levodopa. I stayed with tyrosine for 3 years until I was just strung out from it. Tyrosine produces nor-adrenaline and I was so stressed out I transitioned to natural levodopa. After about a week it became apparent that tyrosine was not going to take care of my PD (my 'hobby' was looking at my chest twitch uncontrollably!) so I did some research and tried CoQ10 in large doses, 1,200 mg a day. Like a miracle my chest fasciculations went away and it placed my condition in remission. CoQ10 has a mixed clinical history with some studies showing it helps PD and some showing it does not. Officially it gets a 'C' rating for PD supplements so it is a great hit or miss. It should be tried on every PD patient because it will do no harm and can only help.

The initial C0Q10 study I read:

ncbi.nlm.nih.gov/pubmed/123...

Another study showing CoQ10 does not slow the progression of PD:

pdf.org/en/science_news/rel...

So it is a mixed bag, to say the least. Plus there are additional issues as to what form of CoQ10 because after the age of 40 people can lose the ability to inter-convert ubiquinone, standard coq10, into ubiquinol - the reduced form of CoQ10. Though it has never been tested in a clinical trial I believe that PWP should try taking PQQ and ubiquinone. PQQ is a new form of Coq10 which has been shown to help regrow mitochondria:

lifeextension.com/magazine/...

Beyond CoQ10 I think the most powerful antioxidant I take is not NAC but the combination of acetyl l carnitine (alcar) and alpha lipoic acid (ala). Both ALCAR and ALA have been shown to be tested successfully for PD and Alzheimer's disease. But when used together, they work at "100 to 1,000" lower concentrations:

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

This is the antioxidant to purchase and not NAC. It should be taken on an empty stomach but it can cause upset stomach and anxiety so they should not be taken late in the day plus 1 capsule only should be taken at a time (divided doses twice a day). If upset occurs I have taken them with a protein free meal because, like most amino acids, alcar and ala compete with other proteins to cross the blood brain barrier. So try it on an empty stomach, say between breakfast and lunch and see how it goes, I first feel it in my stomach and then in my head - it is that strong. This combo has been shown to slow early to moderate alzheimer's disease, diabetic peripheral neuropathy, etc....

I will continue this thread but have to go now.

Rich

stevie3 profile image
stevie3 in reply tosilvestrov

Really helpful, Rich, thanks. I am taking ALCAR and ALA but have been a bit sporadic with Q10

Tryguy profile image
Tryguy in reply tosilvestrov

Hey, nice to see you here again! We had corresponded about a year ago regarding your protocol and I try for brief periods to see if I can get the right dosage of Quercetin and EGCG along with Vit C and the salmon oil.

I was trying the Hinz protocol for 14 months and had to surrender to L/C. My initial dosage (4x/day 25/100 was too low so I invented my own preparation consisting of 1/2 a 25/100 pill chased by a solution of water, lemon juice and 100% L-dopa from Mucuna (nutrivitacost). I am always experimenting with amounts, but it has improved my life drastically. Still, I power on to eliminate the Carbidopa eventually. Do you know of anyone who has tried something like this? It is not so far fetched..

Thanks!

AB

silvestrov profile image
silvestrov in reply toTryguy

Nice to hear from you and glad you are doing well. The Hinz protocal is a viable alternative to Sinemet/Madopar but it too has limitations. Such high doses of MP/levodopa causes cramping and nausea makes it difficult to 'balance dopamine and serotonin' levels and I have communicated with several people who abandoned the protocol. I know Buzz has had some success experimenting with a mixed protocol combining Sinemet, MP levodopa, quercetin etc. Recently I read an article comparing natural MAO-i with Azilect and Selegiline and the 3 best were: 1) curcumin 2) chlorogenic acid and 3) quercetin. Chlorogenic acid is a major component of green coffee beans but much of it is diminished by the roasting/browning/Maillard reaction of coffee beans. Interestingly quercetin is also a component of coffee:

isoquercetin.net/coffee/

Recently I have been re-investigating the components of (primarily) black tea and coffee and now need to update my documentary segment called 'coffee and cigarettes' because of the above info and much more.

Perhaps you should make a posting on the specifics of your hybrid therapy because it may help others.

Janlavelle profile image
Janlavelle in reply tosilvestrov

Hi, I've been using Mucuna and trying to follow the protocol. Would you mind just writing out a simple list of what you take?

bassofspades profile image
bassofspades in reply tosilvestrov

Great post! Thank you Silvestro

silvestrov profile image
silvestrov in reply tobassofspades

Here is the MAO-i study comparing Azilect/rasagiline and selegiline/Deprenyl with natural MAO inhibitors.

globalresearchonline.net/jo...

Judy78 profile image
Judy78 in reply to12stargate

I got off of sinemet got on mucuna D5

Littlerody profile image
Littlerody in reply toJudy78

You're a braver woman than I. But I would have to do it without med assistance Feel better Judy

in reply toJudy78

What is mucuna D5?

Judy78 profile image
Judy78 in reply to12stargate

What's mp ? If it's mucuna then I can tell you the doctor took me off sinemet cold turkey and put me on mucuna. I wouldn't do this to anyone it's unreal

12stargate profile image
12stargate in reply toJudy78

Judy78 oh that is terrible! I am learning, and what is true for me is that I can't go off L/C cold turkey.? I was wondering about that, and now I know. I am not consulting my doc about this, because they don't know either. Some doctors do, but no doctor knows our bodies like we do ourselves.

Keep up the good work👍👍🎈🎈

Littlerody profile image
Littlerody in reply tosilvestrov

Thank you rich as I lay in bed last night trying to get to sleep as I ate too late and too much and paid severely, I had all that info that I found on your recommended website rolling thru my head. All I could think of is imagine being stage 2 pd and trying to keep up that regimen. It only added to my pain. I'm glad to hear from someone who thinks as I do. Basically my Drs office has no help for me now that the ans is being compromised. So I hit the Internet for the day only to overwhelm myself. But as you say I can't imagine weaning myself off the c/l and trying to find a balance. This website has been a wealth info and a great support system for me. From the amino acids therapy I went to stem cell info. The amino acid and stem cell therapy offices are popping up all over th US. Very skeptical as they are all patient funded most likely due to the lack of support from the government cus the pharmetceutical and insurance companies won't hear of it

Afterall they really run the country!!

Thanks again Judy.

Judy78 profile image
Judy78 in reply tosilvestrov

I was on sinemet, new dr dropped sinemet cold turkey & started me on 40% D5 mucuna with supplement b6. I'm up to 24grams a day & insomina & severe pain between doses. I never know if mucuna is going to " kick in " and for how long . Protein dismisses the effect of D5 . Very expensive the D5 is and my arm has tremors all night. Any suggestions would be greatly appreciated

12stargate profile image
12stargate in reply toJudy78

Judy78 i am going to let someone else more knowledgeable than me answer the question. But I would not wait for Mucuna to kick in. I am taking Mucuna along with C/L and I feel fine. It is keeping me from increasing the L/C dosage.

batwing profile image
batwing in reply tosilvestrov

Hi Rich. I am using Sinemet for nearly nine years and take 1100 mg of levadopa with carbidopa fr. I take 300 mg from Zandopa mostly. I need to reduce my Sinemet. Do you suppose your concoction might help me in this?

silvestrov profile image
silvestrov in reply tobatwing

I have a few of my own: How are you doing on sinemet? Do you have on/off.....the usual problems associated with sinemet? And finally, how are your 1,100 mg doses of sinemet divided during the day?

Regardless if you try the experimental protocol (or not), which consists of EGCG, 1,000 salmon oil and 200 mg of vitamin C, you can immediately go on the vitamin C component alone. With research I discovered a article which showed that 200 mg of vitamin c aids in the absorption of levodopa:

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

"In conclusion, AsA (ascorbic acid) can improve LD absorption in elderly PD patients with poor LD bioavailability."

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

So every time you take levodopa in any form take 200 mg of vitamin C. It is difficult finding 200 mg capsules of vitamin c so I resorted to taking childrens 'gummys'.

In a word yes, I think it will help. Of course, it is good to take things slowly and if you try it, I would only substitute one dose a day (leaving all the rest unaffected) to see how you react.

Also, I have been researching why salmon oil is the preferred choice, over, say, cod liver oil, and I think I found a compelling reason why PD patients would benefit for taking salmon oil alone or with egcg + levodopa therapy:

"Only unrefined Salmon Oil like ours contains the powerful, red-hued antioxidant called astaxanthin, which is stripped out of refined Salmon oil supplements.)"

vitalchoice.com/shop/pc/art...

Astaxanthin and esters thereof for protecting neurocytes and treating Parkinson's disease

google.com/patents/EP186732...

"A 2007 study analyzed several popular antioxidants and their antioxidant power. [10] This study found astaxanthin was 6,000 times stronger than vitamin C, 800 times stronger than CoQ10, 550 times stronger than green tea catechins and 75 times stronger than alpha lipoic acid."

"Wild Pacific salmon, especially sockeye salmon, have the highest astaxanthin content."

huffingtonpost.com/suzy-coh...

In a nut shell: 1,000 mg of salmon oil is in of itself good for PD and helps the absorption of levodopa. 200 mg of vitamin c is good for PD and aids in the absorption of both egcg and levodopa. EGCG is good for PD (and about everything else) and aids in the absorption of levodopa through its carbidopa-like chemical activity and MAO activity.

The other part of the therapy, using quercetin, which is good for Parkinson's disease (arthritis, allergies....) also aids in the absorption of PD.

This is still very experimental and I am working out the details on myself. I now take 1/2 a dose of the EGCG supplement (335 mg with 200 mg EGCG) with 1,000 mg salmon oil and 200 mg vitamin c and 250 mg of natural levodopa, upon waking and at 4PM. I have used quercetin + but, at this present time, the above combo is enough.

If you have any questions please send them this way.

Rich

enricomoraca48 profile image
enricomoraca48 in reply tosilvestrov

Can you explain your method of absorbing levudopa from mucuna pruriens using antioxidants and fatty acids? Many Tks.

Bridielena profile image
Bridielena

Oh I love this response. Haven't laughed like this for a long long time. I know I'm not dumb but I would prefer a simpler explanation.

Littlerody profile image
Littlerody in reply toBridielena

If you get one please post lol

stevie3 profile image
stevie3

Having read this, it made me smile this morning as I took delivery of my monthly parcel of supplements (which I order from the states as you can't get a lot of the stuff like melatonin in the UK). Am I fooling myself? I don't know. Certainly, I derivive great benefit from MP, I take a range of other supplements, which may or may not slow this thing down, which may or may not be neuro-protective. But the most useful things I've found are Emergen C for stiffness, camphor oil for my hand and magnesium for cramps. They definitely work. And cake.

Hikoi profile image
Hikoi in reply tostevie3

Stevie,

I thought melatonin was available in UK but only on prescription,

stevie3 profile image
stevie3 in reply toHikoi

Yes, sorry, Hiloi, it is available on prescription, you are absolutely right, I quite forgot that. But doctors here are quite reluctant to prescribe it. I use it occasionally so when I'm getting my supplements I quite often order some melatonin as well.

12stargate profile image
12stargate in reply tostevie3

stevie3 Cake for sure!!!!😎😎👍👍

movinngroovin profile image
movinngroovin

I concur. I did it for a year-expensive & tricky

laglag profile image
laglag

You can tell PD has not messed with Silvestrov's mind! I have never tried MP and/or amino acid therapy, but have a friend that I take to my exercise class that just started an amino acid therapy in February. He gradually went off his meds & started an amino acid therapy with the help of a doctor in Northern Indiana (do not have his name). He has NOT done well. With the exception of a couple of days, he has gone down hill. He was walking pretty well before the therapy with a little bit of a balance problem, but recently has needed a cane & then a walker. He has not been able to talk to me on the phone for at least 3 weeks. His wife answered and all she said was he will not be going to exercise class and has started his meds again and is gradually increasing the dosage and she may need to have someone come in to help her with his needs. I know at one time he told me that it's recommended if you start this type of therapy, it's best taken in the earlier stages, but he was willing to give it a try (he was diagnosed around 20 yrs ago & is in his mid to late 70's). Like everyone understands, everyone is different, but I wanted to put this out here to let you think about it. If I talk to him, I will find out his views on his experience and get back to you.

Littlerody profile image
Littlerody in reply tolaglag

Thank you for that input. I feel 70 is probably the cut off for these kinds of therapy. Just my opinion. I guess that's why I'm being as inquisitive as I am. I am 59. Even the stem cell dr stated the younger you are the better. Plus I'm already seeing advances in the disease. Judy

12stargate profile image
12stargate in reply toLittlerody

Littlerody I think we all need to get our anxiety under control before we start experimenting with anything regarding this condition!!

Bridielena profile image
Bridielena

The fact that I can still laugh , cry, drive myself, shop, cook, eat, sleep, write, type, read and think positively says I'm doing OK........70 is the next one however I expect I shall still be doing OK.

HGE

12stargate profile image
12stargate in reply toBridielena

Bridielena You shall be doing just fine👍🌺🎈😎

Bailey_Texas profile image
Bailey_Texas

Funny i just take my C/L, azilect and requip and get on with my day. No guessing just adjust as needed. Have faith in quantity and content of meds because of oversight by government. Doing the things this post suggest takes too much time and effort and time is one thing i don't have enough of and can not get more. Meds are meds so called natural and RX they are the same.

stevie3 profile image
stevie3 in reply toBailey_Texas

But Bailey, you are passionate about exercise and you often attribute the fact that you are doing so well to that. I read your posts about exercising with some awe but I know I couldn't do it to the level you take it to. I guess my point is that we are all different in our approaches to managing our condition. I'm a bit mix and match - exercise, as low a dose of meds as I can get away with and yes, a lot of experimentation with supplements. I have that luxury as I'm still in relatively early stages - probably 4 years down the track. I truly value the experiences and information people take the time and trouble to post here. Where else can you get such fantastic information?

Bailey_Texas profile image
Bailey_Texas in reply tostevie3

I agree that is a great site. I hope that people here can find a solution.

Just want people to be careful with natural meds they can be harmful just like RX meds.

Littlerody profile image
Littlerody in reply toBailey_Texas

Another reason I'm so hesitant to try supplements and stop the c/l.

Bailey_Texas profile image
Bailey_Texas in reply toLittlerody

This may sound silly but supplements are like a box of chocolate you never know what you going to get.

rainbow676 profile image
rainbow676

Dear silvestrov,

First, thank you so much for your incredibly informative posts — I have learned so much from reading them! Your research is really impressive.

I was wondering if you might have any insights regarding my (very wonderful and cherished) mother. She was diagnosed with PD five years ago. She did well on Sinemet for 3 years but about 2 years ago the medicine stopped working well. She takes about 700mg Sinemet daily, divided between doses of Sinemet IR and Sinemet CR.

The medicine does not work well — she gets about one hour of relief from each dose, if any. She also has dyskinesia and dystonia, particularly in her legs and arms when the medicine is not working or is wearing off. Her worst symptoms are shortness of breath (a respiratory dyskinesia) when the medicine is loading or wearing off, as well as the sensation of “restless legs.” She does not have a pronounced tremor.

Lately, she has been having sweating episodes when the medicine is not working on when it is wearing off. This is possibly an autonomic nervous dysfunction related to PD.

For a few weeks, she was taking mucuna + carbidopa (lodosyn) in place of sinemet once or twice each day. Unfortunately, this seemed to make the sweating worse. Do you know whether the formula of fish oil + vitamin C + EGCG + mucuna or mucuna + quercetin/bromelain might allow her to take mucuna without the bad side effect of sweating? (She also felt that the mucuna wore off more quickly than sinemet.)

In terms of general fitness (in case that is helpful background info), my mom is 69 and tries to do about 10-15 minutes of exercise per day. But sometimes this is hard because she is feeling too badly to exercise or even leave the house. She is also underweight and has lost 25 pounds since diagnosis, owing to the fact that food seems to interfere with her medicine. So any suggestions would certainly be welcome. Thank you again for your truly outstanding posts.

Best regards,

Elizabeth

silvestrov profile image
silvestrov in reply torainbow676

Elizabeth,

Sorry to hear of your mother's difficulties with Parkinson's and levodopa side effects. As for your question, "Do you know whether the formula of fish oil + vitamin C + EGCG + mucuna or mucuna + quercetin/bromelain might allow her to take mucuna without the bad side effect of sweating?"

I have never been asked that before and no one taking the EGCG+ experimental therapy has levodopa-induced sweating so some research is required. I individually researched the components of the EGCG therapy and found fish oil, when taken in large quantities can induce sweating.

Fish oil: ehealthme.com/ds/fish+oil/s...

As for EGCG I found conflicting information online and am searching for a scientific study on the subject - most likely an Asian study. On a weightlifting website, weightlifters - I was a weightlifter when I was a young man, are pretty well versed in nutrients of all sorts. On one site they note the side effects of green tea:

Common side effects with very large doses of green tea (exceeding 5 cups of green tea per day):

bodybuilding.com/fun/hashmi...

But on a chemotherapy website - this information is down below in the comments, a person had their sweating decreased by taking EGCG.

"I had nightsweats during the period of being diagnosed with CLL (2004) and first being treated with Rituxan (2008). By 2007 I was relying on 125 mg capsules of EGCG to work its wonders on my protruding lymph nodes. It didn’t do much to slow the swelling. My neck, by 2008, had swollen to 19″ in circumference from a starting point of 16.5″ pre-diagnosis. But the EGCG was immediately effective in putting an end to my nightsweats. The most dramatic instance was an occurrence of daysweats around noon one day when I began soaking through my couch. I took an EGCG capsule and stopped the sweats within minutes. This may have been a fluke event but it actually happened.

"

I took EGCG in a unique way. I dissolved the powder in two teaspoons of water and kept the solution under my tongue for twenty minutes, swishing it around in my mouth. This allowed me to bypass the digestive process that destroys the EGCG before it can reach the blood. Perhaps the nightsweats being discussed above are more ferocious than any I experienced, but I did wake up damp, cold or soaked many nights before I became an EGCG enthusiast.

"

chemobrain.wordpress.com/20...

So the answer to your question is a definite maybe or maybe not. I need more info.

There would really be one way to find out and that is to try the EGCG+ combo.

Whether that happens or not, there is an important issue that needs to be addressed: excessive sweating causes of the loss of basic nutrients in the body and this can only worsen your mother's PD symptoms and levodopa side effects.

From several internet searches the number one herb to decrease sweating is sage.

herbs.lovetoknow.com/Can_He...

annemcintyre.com/salvia-off...

I prefer taking herbal supplements in standardized form because when drinking tea for a therapeutic benefit, the dose of catechins, caffeine, theanine, theaflavins......may be different with every cup so a consistent benefit may not be possible.

After I did an internet search I found the following supplement and it may be worth while to try on a 1 month basis to see if it can make a difference:

dermidry.com/?gclid=CJOCsYK...

The question is, are the components in dermidry good for PD?

Astragalus - yes - ncbi.nlm.nih.gov/pubmed/194...

B-complex - yes - no research is needed. B vitamins are energy vitamins and sweating depletes B vitamins.

Chamomile - yes - sciencedaily.com/releases/2...

Passionflower - yes - It contains harmaline, and harmalol which are categorized as beta carbolines and they are MAO inhibitors.

onlinelibrary.wiley.com/doi...

Calcium and magnesium: Calcium should never be taken as monotherapy and I am of the opinion that it is a dangerous supplement if taken alone. Calcium should always be taken with magnesium because magnesium regulates calcium. Magnesium is great for PD and I take it myself.

Vitamin C - yes - multiple studies show vitamin C is good for PD including the following:

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

Vitamin E - there is conflicting information about E and PD. Conflicting meaning it helps the condition or does nothing at all. In so many words, vitamin E could only help because sweating depletes it.

Selenium - yes and no. Selenomethionine is the organic form of selenium and I take 200 mg a day and it has a positive clinical (lab) trial for PD:

ncbi.nlm.nih.gov/pubmed/163...

The only worrying point about selenium is it has been shown to be high, along with iron, in the brains of PD patients with on/off:

ncbi.nlm.nih.gov/pubmed/174...

Then again, sweating increases the loss of selenium so it needs to be taken because Se is an essential micro nutrient. All things considered I think you should try a one month trial to see if it does help.

As for the EGCG +, like I said, not enough information exists to come to a definitive conclusion.

I hope this helps.

Rich

PS. If you have any more questions I am happy to try and answer them.

rainbow676 profile image
rainbow676 in reply tosilvestrov

Silvestrov -- I can't thank you enough for this very helpful and thorough reply. It is really kind of you to take the time to send me such detailed and well-researched information. (And my mom says thanks, too!) We will look purchase Dermidry and carefully review your other suggestions.

With thanks and best regards,

Elizabeth

SKCW profile image
SKCW in reply tosilvestrov

Dear Rich,

I wonder if you are a doctor? A biochemist? Or maybe you are a bottle cap maker with hidden genius. When I'm trying to learn from your posts, you often mention that you are pressed for time. So I like to think that you are rushing off to a secret, underground laboratory concocting a cure for Parkinson's Disease.

Meanwhile, I'm where I live in Switzerland trying to figure out how to help my mom treat this condition, which is so incredibly diverse and could take so many different pathways of expression. I wish that I could invite so many of the wise people on this site over for a huge roundtable discussion. I would make my famous cream puffs with dark chocolate topping and serve coffee, and we could all talk until a solution would miraculously become clear. That's the world I'd like to live in.

But instead, I have questions. I know I wrote you before, but I will try to summarize my questions better so that they maybe are not so time-consuming to answer.

1.) Do you think that Carbidopa the devil it is made out to be in this article?

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

Raising death rates and binding vitamin B that can't be added or it will undo the Sinemet's effectiveness? And if it is, what's a person to do? They seem to have added it to every Levadopa drug.

2.) How do you know the best percentage, most reliable source of Mucuna Pruriens that won't be tainted with contaminants or not at all what it claims to be? I heard a study that found one in every three supplement containers does not have what it claims to have within.

3.) Though a number of people say they have been helped by the Hinz Amino Acid Therapy Protocol, others seem to indicate it is very expensive and that the urine assays they do to test the levels of amino acids in the body are not even accurate. Hinz's protocol seems to make such sense, but I know he's had his med license suspended for a time and some chastising for supplement claims. The doctor who could do this in California wants 450 dollars for the first appointment (not insurance covered) even if she does not decide to go with the treatment. If she does decide to go forward, she's committed to 2500 for the first month's treatments. While a number of reviews are good on the doctor, others imply his focus is on selling. I hesitate to cancel the appointment, though, because he seems one of a few licensed medical doctors who run this Hinz protocol (others being chiropractors, etc.) It seems like mainstream med wants to wash its hands of everything besides Sinemet, dopamine agonists (which Dr.Stanley Fahn does not like to give to patients over 70yrs because of hallucinations and confusion youtube.com/watch?v=utVZaOL... ). The American Academy of Neurology won't even claim that there is evidence that exercise helps, even though all signs scream it does, greatly. They won't endorse supplements, even though people talk about how much they help. They turn their heads from Mucuna, even though it is my understanding that it has been used on people for thousands of years in India. What madness is this? It reminds me of when the cigarette companies kept saying that they couldn't prove for sure that cigarettes cause cancer. The doctor's seem to have only pharmaceutical solutions, some which come with heavy physical/psychological costs.

4.) Do you know if use of Mucuna Pruriens causes any dyskinesias? Is it ok to start using it early or is it like Sinemet (where you try to wait until you really need it because it's average length of effectiveness is 6 years before it stops working and leaves the fallout of dyskinesias).

It also makes me wonder, all this focus on just putting more dopamine in, letting less get destroyed, putting in chemicals that act more like dopamine might be sending some people towards the temporary experience/symptoms of schizophrenia/paranoia with all that excess of dopamine. Less emphasis is put on its synergistic partner, serotonin.

Ok, so it looks like I lied and did not summarize this to be less time consuming!!! I owe you cream puffs (without vitamin C or salmon oil, just hard core, straight, good for the soul stuff).

Warm Regards,

Sarah

Not what you're looking for?

You may also like...

Parkinsons & Amino Acids

Hi All, I was diagnosed with Parkinson's a couple of years ago. A bit of investigating pointed me...
Harleybob08 profile image

Macuna Pruriens capsules

Hi all, just wondering if anyone has experience of using these capsules, 700mg macuna pruriens....
Lamadre profile image

Barlowe's herbals elixirs Macuna Pruriens

Seed extract 650mg. 40% PILL form it's white, I thought I was getting the whole herb which is...
akgirlsrock profile image

Long term use of Macuna Pruriens

Are there any negative side effects in using Macuna Pruriens, such as the side effects of long term...

Macuna

What is the latest and greatest info about Mucuna?

Moderation team

See all
CPT_Aleksandra profile image
CPT_AleksandraAdministrator
CPT_Anaya profile image
CPT_AnayaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.