Parkinson's Movement
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Simon and Mucuna Pruriens

Guys. Simon of Science of Parkinsons fame, wrote the following about Mucuna Pruriens. I'm pretty disturbed by this as I'm a MP taker and somewhat puzzled as elsewhere he claims that in trials MP has consistently performed much better than CL when it comes to dyskinesia. I thought that this was the appeal of MP (in that we are less likely to get dyskinesia from it). Would be interested to hear from folk who have taken Cl and MP at the same time for a considerable period who have either not developed dyskinesia or those of you who support Simon's statement. And of course any analytical contributions very welcome:

'So, with that said: If I had PD I would definitely NOT be supplementing my normal L-dopa treatment regime with any supplements that contain mucuna pruriens extract (certainly not without discussing it with my clinician first).

This is for one simple reason: high levels of L-dopa (in the lab at least) does bring on abnormal involuntary movements (or dyskinesias) a lot quicker than low levels of L-dopa.

Supplementation of normal L-dopa treatment regimes with mucuna pruriens could significantly increase the level of L-dopa that the body is receiving, raising the risk of developing side effects like dyskinesias. While the short term benefits may be pleasing, the long term picture could be more troublesome as a result of this approach'.

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For me, this is the key sentence: " high levels of L-dopa (in the lab at least) does bring on abnormal involuntary movements (or dyskinesias) a lot quicker than low levels of L-dopa"

The sentence lacks context, and so its meaning is unclear/ambiguous. It would have helped if he had included a reference. Perhaps he did give a reference earlier in the article. I'll have to read more of the article to check for this.

Here is the link, in case others also wish to read more of the article:

scienceofparkinsons.com/201...

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That sentence sure does lack context. He makes it sound like once dyskinesia occurs it is a permanent condition. However this not at all the case. Dyskinesia can be temporarily induced in anyone quite easily – when I was first diagnosed I experienced dyskinesia as a result of taking a 50/200 C/L immediate release. Dyskinesia is merely the result of too much dopamine in the brain.

For early-stage patients who are still producing dopamine, in the event of taking levodopa, internal production of dopamine in the brain will self regulate so the total amount present is what should be, unless you take too much. Late stage patients no longer have the ability to self regulate because of little or no dopamine production. At that point getting the right concentration of dopamine in the brain is much more difficult, and dyskinesia is more likely.

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I'm with park bear. I was experiencing aggressive dyskinesia at one point from taking too much Mucuna pruriens and Julie grace gave me a heads up. I cut back on the Mucuna and taking B1 and the dyskinesia is gone. My neurologist said the same, too much dopamine.

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to clarify, do you mean u cut back on macuna AND B1, or u cut back on macuna and added B1?

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Just lessened the Mucuna dosage only. The results of having no more dyskinesia, I believe are from reducing (which advice I got from juliegrace) the 100% pure mp levadopa from nutrivita along with continuing the B1 dosage of 4 grams a day as per Dr C

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Ernie, do you take decarboxylase with your pure L-dopa from MP? Pure L-dopa from MP doesn't have natural decarboxylase as in whole bean powder.

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Hi Despe, no I don't. What is that? I take a bunch of herbs in powder form.

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It's carbidopa. Sinemet has levodopa and carbidopa. Carbidopa lets dopa get to the brain while it helps with nausea. Natural "carbidopa" are green tea ECGC extract and vitamin C. Those two substances act as the synthetic carbidopa.

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Some of the herbs I take are mao inhibitors which does the trick, Tribulis terestris is one of them

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Can you share the names of other herbal MAOI s?

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botanical-online.com/englis...

Go to this link and find a list of some of them plus a detailed explanation of what they do.

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Thanks!

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MJF has dyskinesia. You suppose he takes too much L-dopa? :)

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It could be. It could also be he doesn't use B1. But long term use of sinemet is also said to cause dyskinesia.

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I think this is a very interesting area for research... i.e. dyskinesia with MP/non-synthesised L-Dopa.

My husband, after a year of success with taking 99% L-Dopa has developed some slightly disturbing (to me) head movements when at peak dose.

What isn't known is do these dyskinesias get worse with non-synthesised L-Dopa?

If they weren't present when he first started taking it, then surely this means they could get worse.

I don't think anyone including consultants completely understand dyskinesias and they seem to be fairly unique to each sufferer?

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When you say your husband has had success with Ldopa @99% do you mean Mucuna?

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yes, we get it from nutrivita shop, it's pure, not the whole bean...

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you didn't answer jeeves question. He is asking what you meant by "your husband has had success with Ldopa @99% "

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I have had dyskinesia from both c/l and as little as 40 mg of the 99% pure (Nutrivita) MP and a 1/4 of a 25/100 c/l. I don't think one is worse than the other. For me, it's completely dose dependent.

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Julie, what is your reasoning to buy 99% pure extract?

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I don't use it. I tried it, using the Silvestrov protocol to see if it would cause less dyskinesia for me.

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Julie, did you take green tea ECGC extract capsule and or Vitamin C with the MP?

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Yes.

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Julie, How how long have you been taking Silvestrov's protocol and how do you feel it's working for you?

Marc

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Marc,

I tried it for a short time a while back. It didn't work any better than c/l and very low doses caused dyskinesia, so the inconvenience of measuring minute doses of powder and combining with supplements was simply not worth it to me. 1/32 of a teaspoon is equal to 100mg of levodopa. I currently take a10/100 c/l 3-4x daily. I still have mild to moderate dyskinesia most of the time but it is better and more predictable than it was on 25/100 c/l or the 99% MP or Rytary. I only take c/l during the day and after a "wearing off" period during which my dyskinesia increases (that directly contradicts the 'too much l-dopa is the only cause of dyskinesia' theory), I am dyskinesia free for the night - usually about 12-14 hours - until my first pill kicks in in the late morning. I am pretty functional during this time.

Julie

p.s. A few months ago I tried whole bean MP 20% l-dopa 500mg capsules. One, two and three capsules had no effect. Four capsules gave me a short "on" time with fairly significant dyskinesia.

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Chemically, L-DOPA from MP is no different in any respect to synthesised L-DOPA. So if you take both you should calculate exactly how much L-DOPA you're actually taking, and focus on that number, not how much comes from which source.

There is one difference in the formulations. C/L has carbidopa, which lengthens the survival time of L-DOPA, giving you more bang for a lower buck. It also helps to prevent nausea. As far as I'm aware, there are no degradative enzyme inhibitors in MP (happy to be corrected on this).

The only way I could imagine how dyskinesia development would be different for either synthetic or MP-derived L-DOPA is the faster turnover of MP - but that would also bring lower efficacy.

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The problem with MP is that non of those “whole bean powders” have the same strength and because of that the dosage is hard to find. Technically people are either overdosing themselves with (MP) dopamin in peripheral blood because of the dopamine decarboxylase OR taking less where has no effect at all. Even if they find the right dosage the peripheral dopamine decarboxylase will break them all to Dopamine. Too much Dopamine in peripheral vascular system has several side effects including: Irregular heartbeats,Nausea,Vomiting,Anxiety, Headache,Chills,Goosebumps, Shortness of breath.

Serious side effects of Dopamine include:

Heart arrhythmias that can be life-threatening

Kidney damage,Gangrene of digits at the higher doses,Dopamine may cause cardiac conduction abnormalities (e.g., ventricular arrhythmia, atrial fibrillation, widened QRS complex, ectopic heartbeats), tachycardia, angina, palpitation, bradycardia, vasoconstriction, hypotension, hypertension, dyspnea, azotemia, piloerection.

In my humble opinion,MP is a good source of boosting energy with aphrodisiac effects for a healthy individual that doesn’t need to take it as a substitute to the Dopamine in central nervous system, but for us ,the PwPD, that “60% to 80% of our Dopamine producing neurons are lost “ canot be a substitute to Sinemet or alike.

Dr Costantini is totally against MP as a substitute to Levodopa. (I personally asked him about it).

Kia

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Hi Kia

I find synthetic ldopa possible side effects concerning

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I think it’s all about the total amount of l dopa you are taking. I’m not sure it matters from which source. The difficulty with mp is that the strength is not clear (which is why I’m not taking it but sticking to a low dose of madapor). I guess you should just take the minimum amount you can that makes you feel ok.

Everything to do with this condition is all so conflicting. Who to trust?!!

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My husband is on MP. We are slowly tapering him off LDopa. Fromm 600 mg. down to 300 mg. LDopa can cause tachyphylaxis (tolerance andcwith it, dtskinesias,etc,)

We buy Solaray brand. It has standardized doses in capsule form.

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MP works because it is/has L-dopa. You are trading, not eliminating.

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What do you mean from 600mg down to 300mg? L-dopa or whole extract weight?

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Does that mean it’s easy to calculate how much mp you need ??

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We use Dopabean by Solaray 325 mg.

for which its L-dopa is 15%, equating to abt. 50 mg.

We sre not only replacing but taperibg off very slowly at the same time and my hubby is good so far.

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I read that post from Simon a while ago and I took it to mean that combining c/l and MP may cause levels to be higher which can cause dyskinesia. I think if one experiments carefully combining may work just fine as a bridge between c/l doses especially as some MP comes in smaller doses than c/l. I've gotten the impression from some posters onHU that they don't think of MP as levodopa and don't count it as part of their total daily amount of levodopa. As Cagey84 said in a comment above, l-dopa from MP is the same as l-dopa in pharmaceuticals.

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I personally take MP and believe an important weakness in the C/L approach is the inability to zero in on the ideal dose. I use a .00 scale to stay consistent and precise enough. Not to mention combining my dose with nutritonal supplements aimed to sustain MP effectiveness over time and hopefully at least slow down progression.

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I measured it with a jeweler's scale and combined with supplements, also. I need such a low, continuous dose it just did not work for me.

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hello

would you be able to share which nutritional supplements you take?

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There will be no more MP trials. No $$$ for big pharma. Green tea and Vitamin C are NATURAL decarboxylase!

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this decarboxlase enzyme is B6 dependant

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A question for those who understand this better than I -- I understand that carbidopa helps get more levodopa into the brain, allowing a lower dose of levodopa than if one takes MP. Is it the amount of levodopa in the brain, or the total amount of levodopa in the body, that causes dyskinesia? If it's the amount that gets to the brain, then a larger dose of MP than C/L would produce the same level of dyskinesia...

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It's the amount in the brain, and your conclusion is correct (IMHO).

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I agree with jeffreyn, it's the amount in the brain.

“… then a larger dose of MP than C/L would produce the same level of dyskinesia...”

I don’t know that we can conclude that. It may be that some combination of, or synergy among, the 400 other compounds allow for higher dose with less side effects/dyskinesia.

As you said, Cagey89 makes an important point that the L-dopa molecules in Mucuna P are identical to the L-dopa molecules in carbidopa/levodopa, which is to say there is no such thing as high-quality and low-quality L-dopa, which is to say the least important part of the plant is the L-dopa because if it’s just L-dopa you want, there are better ways to get it -- it’s the 400 other compounds in the rest of the plant that is the reason to take it.

For example, “It has been suggested that although Levodopa per se can increase DNA damage through copper ions in the brain, some other compounds in Mucuna alleviate this damage via exerting a metal chelating effect.[20] This insinuates less potential DNA damage from copper ion excess with Mucuna relative to Levodopa. The general co-ingestion of anti-oxidants alongside metal chelators may confer additional protection.[21]”

examine.com/supplements/muc...

I suspect the rest of the plant does additional things like this which Carbidopa doesn’t do, yet there’s something the plant that does what carbidopa does.

Simon did say it, but I don’t think it gets enough emphasis that it is not the L-dopa in Mucuna P that causes it to be better absorbed, longer-lasting, and with less dyskinesia, it’s the rest of the plant.

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God that's a good question!

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I've now read the whole article, but I can't find anything to support the key sentence: "high levels of L-dopa (in the lab at least) does bring on [dyskinesias] a lot quicker than low levels of L-dopa". I think it's mainly his use of the phrase "a lot quicker" that puzzles me.

I also can't find anything in the article to support the following sentence: "While the short term benefits may be pleasing, the long term picture could be more troublesome as a result of this approach."

If this is what he believes, it would be interesting to hear his view on the key finding of the Ghana trial (his first reference), as summed up in the final sentence of the Ghana trial abstract [1]: "Hence, the practice to withhold levodopa therapy with the objective of delaying the occurrence of motor complications is not justified."

As park_bear put it, he makes it sound like once dyskinesia occurs it is a permanent condition, but this is not at all the case.

On the general issue of the pros and cons of taking MP, I'm fairly happy with the main points that Simon has made:

1. Some lab trials have found that MP causes less dyskinesia, but more research is needed.

2. The quality of available MP supplements is likely to vary (both with product and with batch) - see his answer to "Henry" in the comments section of the article.

[1] The modern pre-levodopa era of Parkinson’s disease: insights into motor complications from sub-Saharan Africa, Roberto Cilia et al., 2014.

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Nice post

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Reading your doubts about the reaction of taking MP causing dyskinesia was experienced by me too.i was on sandopa an Indian L dopa tablets produced in India, when i was advised to start taking MP along with "sandopa " tablets. in the beginning it was working like i have found a substitute for chemically prepared and in the long run when "SANDOPA" will stop working MP could replace the same and i could live comfortably on MP. but that was not to be. intake of MP caused constipation; nausea; slightly giddy and overall discomfort. also now-a- days as soon as i take SANDOPA i feel my legs are not easy to walk and today only trying to find what DYSKINESAI did i realize that this new trouble which was not there so far started to give me trouble. There fore as i could not find the source of this new inconvenience convinced me that it has come from MP causing due to

more supply of L DOPA in the blood. now can someone tell me that is there any truth in

that chemically prepared L dopa could be replaced by MP and help me to come over the handicaps created PD.

regards.

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Hi billiards,

Thanks very much for your comment. I googled "sandopa" and found something called "syndopa". Here is part of what it said: "There are two types of responses seen with the administration of Syndopa Plus Tablet: The short-duration response which is related to the half-life of the drug. The long-duration response depends directly on the accumulation of effects over at least a two week course, during which ΔFosB accumulates in nigrostriatal neurons. When used in the treatment of Parkinson's disease, this response is seen only in early therapy, as at that stage the inability of the brain to store dopamine is not yet a concern."

This was of great interest to me because it explained something which I experienced recently. A couple of months ago my neuro increased my levodopa dose. For the next 2 or 3 weeks nothing happened, and then suddenly my tremor virtually disappeared, and has remained that way since then. The syndopa text explains what happened, and also reveals to me that I am still in the early stages of PD. Happy days!

Anyway, getting back to your question, if you are now experiencing dyskinesia, you could try halving your dose of sandopa/syndopa, and taking it twice as often.

Also, as others have said, if you are taking sandopa/syndopa and MP, you are getting levodopa from two sources. With the sandopa/syndopa you know exactly how much you are getting, but with the MP you don't really know.

Jeff

P.S: I have no idea what "ΔFosB" is. I suspect it is a misprint.

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Zandopa

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My interpretation is that all he's saying is:

MP works, therefore just like any L dopa type compound can, under certain circumstances, cause dyskinesia. His caution applies to the use of MP in connection with POM L dopa and the fact it is natural and self-prescribed, which leaves the total LED somewhat ambiguous.

The answer, of course, is to reduce one or both elements until dyskinesia subsides and hopefully there's sufficient symptom control.

Top bloke our Simon!

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Some people make a success of it but I have read the papers he refers to and agree with his advice. Park Bear is spot on - it is complicated enough getting the end state dopamine levels right without confusing the issue with variable quality L-Dopa via MP without carbidopa. We only have our individual symptoms as a marker and they vary so much anyway that dosage choice is never easy. So no surprise that neuros trying their best to advise on dosage really don't like MP.

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My neurologist has no problem with me taking my instead of cl

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Lucky you! :)

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I think Parkbears observation is a good one in that early PWPs have enough naturally to manage own levels biologically but that later stage don’t have such ability. Can’t wait!

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My experience as I have used both separately and together is the mp has a better response in controlling the tremors than the sinemet. And when taken together I've had to watch the sum total as Juliegrace stated otherwise I'd experience dyskinesia and even if too much from any source either mp or sinemet also brought on dyskinesia. So the sum total is the problem because ldopa is ldopa the difference is one is from a natural source therefore less harmful side effects in the long run.

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just because something comes from a "natural" source does not mean it is safe. There are many "natural" things that can be toxic and others that are useless.

This is a silly example but natural raspberry flavor comes from the anal glands of an animal. One would assume natural flavor comes from the fruit or vegetable source but not always. Also since supplement companies are not regulated, you cannot be sure of the purity of the content.

Be cautious and discuss with your Medical Team any supplements before you start them.

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Are you in the medical field?

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I am a retired RN and my husband had PD. Many people feel if a product is sold over the counter, it is safe. Most drugs are derived from the same compounds as OTC's but their strength is regulated and may contain unknown additives. Docs need to know everything a patient takes and that they are taking all prescribed drugs as ordered to avoid over prescribing and side effects or interactions.

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I thought so. You write like a medical professional. NO MEDS for me or my husband, just vitamins and MUCUNA. I don't trust or believe medical doctors!

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Wow - that's pretty extreme!

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I too had been reading about mucuna pruriens and spoke to my neurologist about it when I saw him recently. I currently take Sinemet Plus and Rasagiline. He suggested that it would be unwise to use mucuna pruriens as the amount of levadopa in it can be an unknown quantity, whereas we know exactly how much there is in the Sinemet plus tablets.

I know that many of us with PD would prefer to take a natural substance but there is little incentive for the pharmacy companies to investigate it as there is little likelihood of them being able to get any commercial benefit. Whilst this may be disappointing to us it is a fact of life - companies have to make a profit. We need a philanthropist to take an interest in this and fund the research - otherwise, it will continue to be a bit of a guessing game as to dosage etc.

Colour Purple

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Even if you know the exact amount in Sinemet Plus, how do you know that it is the right dose for you in the long run?

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In my copy of the Madopar PI document (i.e. Prescribing Information), Roche describe a process for arriving at the correct dosage of levodopa. If I've understood it correctly, they say to keep increasing the dose in small steps until either the motor symptoms disappear, or dyskinesia appears. If it's the latter then back off a little.

"The appearance of involuntary movements should be regarded as a sign of levodopa toxicity and as an indication of overdosage requiring dose reduction. Treatment should, therefore, aim at maximal benefit without dyskinesias."

guildlink.com.au/gc/ws/ro/p...

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Dr Marty Hinz has developed a protocol for using Mucuna and no pharmaceuticals. Many published papers and many Drs are treating Parkinson’s this way. Neurologists have never heard of it ( my experience) because it’s not the “gold standard “in medicine. I believe the gold standard is pretty tarnished when you look at long term carbidopa users. He believes carbidopa is cause for the downfall in Parkinson’s treatment. Its not simple or cheap but it has worked for me. I’ve substituted alternate sources for some of the amino acids to lower costs n B1 has reduced the volume needed but natural amino acids can treat Parkinson’s successfully I believe. I guess I had to decide what’s Parkinson’s really costing me and money is only part of it. My wife is a DVM ,PhD pharmacological toxicologist so we went into this with our eyes wide open. It’s worth exploring. Best of luck!

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We have to learn a lot from you! :)

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I was on Hinz's protocol for 2 years and it didn't work out for me. So I went conventional with C/L. My neurologists will not even acknowledge those 2 years as being treated. I had sensitivity to MP then and I have sensitivity to C/L now :(

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I prefer the well-documented research (In book form now available to us) entitled Mucuna vs. Parkinson--Treatment with Natural Levodopa written by Dr. Rafael Gonzalez Maldonado, Neurologist. It is available online through Amazon.com, and possibly other sources. Get the facts straight from the research.

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Right, got the book. Very informative and useful for those using MP.

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". . .(certainly not without discussing it with my clinician first)."

If you know of a clinician other than homeopath who is willing to discuss MP protocol, please let me know, Simon! :(

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this is why you must tell your MDS about each and every supplement you take regardless of how insignificant they may seem. You must all work as a TEAM and withholding info of any kind can be devastating.

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My husband's neurologist didn't even want to hear about MP or vitamins. There goes the TEAM work!!!

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sorry your neuro is closed minded. Maybe you need a new one

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I am in the US. Things are different in different regions

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Not a lot around where I live. Medical doctors stick to their big pharma medicine.

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I do live in the US, guess WRONG STATE!

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The trouble is that the 3 I’ve known haven’t been interested in working collaboratively. My previous to current one used to just say ‘whatever works’ and slightly shrug his shoulders and the one before him reckoned I didn’t have PD but charged me £220 for 25 minute consultation. They all seem bemused when you raise diet, exercise or supplementation and seem to lack the insight to appreciate how powerful a medicine it is for a patient to believe that they can take control of their lives. That’s my experience anyway.

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I emailed Simon to let him know about this thread. He replied that he is pretty flat out at the moment and so he will not be able to join in the discussion directly.

However, he says that he is planning to add another addendum to his SoPD blog post as a result of our discussion.

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Sounds like a bad case of CYA.

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