I just purchased micro ingredients organic Mucuna 20:1 extract. Is this a good company? Does anybody else take this? It seemed to have very good reviews. How much should I start out with daily? Right now I take a half a cup of fava beans in the morning, and a quarter cup in the evening . I'd like to eliminate the morning Fava beans and replace it with this powder. Thank you
Hello, just recently diagnosed with pd. A... - Cure Parkinson's
Hello, just recently diagnosed with pd. Also have ms. I'm 53 and want to try to go to the natural route and not take any medicine.
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Kelrjd
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78 Replies
•
Welcome to the forum, Keljrd. I can certainly understand your desire to go with the natural stuff during your initial stages of Parkinson’s. However, taking any kind of processed Mucuna Pruriens is a waste of money and effort. You might as well take the synthetic Sinemet. There’s plenty of processed Mucuna out there from 15% pure Levodopa to 98% Levodopa. They are all pharmaceuticals from a honest perspective.
The good news however, is that the Mucuna seeds ground into a raw coarse powder with nothing else done to it is also available although much more expensive. Truth be told, this was exactly the stuff that was used in the clinical trials that you might have read about. The investigators in Europe used the raw stuff, measuring 30 grams each and they found that the trial participants got much better On times with no dyskinesia.
I have used Banyan brand Mucuna powder which is available at Amazon and Banyan’s own website and they do have the good stuff. You can use a kitchen micro scale to measure out the exact quantity.
The natural Mucuna works very well during the initial years of the disease, but is difficult to manage, tightly portion, titrate and obtain the same kind of sustainable dosing as Sinemet. If you have an active member day job, it can become a problem. The difference is the convenience and of course less dyskinesia if you take the raw stuff. I found that it is also very gentle on the stomach.
There are a lot of forum members who are followers of the Mucuna protocol and some might disagree with my opinion, but it has been scientifically speculated that the raw powder presents added benefit through other natural components of the Mucuna seed that might help Parkinson’s, but is stripped away when the pharmaceutical process produces the white stuff.
Good luck to you and my best wishes for a hopefully long and good quality of life. Your journey has started with a jolt, but you will travel with fellow sufferers who will understand your pain and provide you with a supportive hand.
May I ask when you were diagnosed? Thank you
Thank you so much for your informative post. Would that be 30 grams per day? Or per dose? If per dose, how many times per day? Thanks!
Hi dvoranel. Good morning. Sorry for my late response. I completely missed responding to your question. I had drafted a response the other day and I forgot.
30 grams per dose in a fruit smoothie is good. I found that it lasted for about 12 hours initially. I suspect that it would eventually require more doses per day to give you the same amount of relief. Hopefully it helps.
This was the product:
banyanbotanicals.com/kapika...
Hi pd patient, thanks so much for your reply. Can you please tell me approximately what 30 grams would be in teaspoons? Also, do you have an idea of how much levodopa would be in that amount? Thank you so very much! This could be a great solution for me.
It’s 7.2 tsp 
Thank you so much. Do you happen to know how much levodopa we get in that 7.2 tsp? Also, I understand this gives you approximately 12 hours relief?
It might give you 12. I can go 3 hours to 10 or 12. No day is the same for me. In terms of how much levo is in 7.2 teaspoons I would revert that back to the group and ask. I’m not really sure.
Rwor thanks for answering that question. Dvoranel, I didn't use teaspoons, so I don't know. I used a kitchen scale.
If I remember correctly, Banyan answered my question at that time by saying that the Levodopa content in the powder could be anywhere between 5 and 6 percent depending upon the crop. Because it is a natural product with no alterations, they said
that they couldn't give a specific number.
I am glad that you are doing very good research and due diligence bed plunging isn't a widely adopted but unregulated ayurveda inspired regimen. I never asked those questions and couldn't convince my MDS to allow me to continue the protocol.
Allopathic or Western medicine relief on tightly controlled doses under a well regulated environment. So, I also need to warn you that if you ever need to get treated in a hospital, then all bets are off because they won't let you continue with the Mucuna under their watch.
As a word of advice, I strongly urge you to consult with an ayurveda doctor and I recall some members of the forum recommending a doctor who will see your over Zoom or Skype.
Thank you Rwor. I have just started using Barlowe's capsules. 40% levodopa. I think it might be wise to have all the constituents of the Mucuna rather than the 100% Nutrivita extract. 2 capsules gives me maybe 3 hours. But not as "dramatic" as the Nutrivita so far. I tried taking 2 Barlowes with 1/16 tsp Nutrivita and that combo for some reason made me nauseous. Still experimenting and looking forward to trying Banyan after a while.
Do you find that the dyskinesia is less with the Mucuna seeds/powder?
Rwor, no dyskinesia at all. As I said in my previous reply to Dvoranel (which I just edited, so you might want to read it again), the only downside is that it will be a deal breaker if you ever need to get treated at a hospital. Also, ironically, I got questioned quite a bit at the airports when I used to travel extensively for business. They wanted me to explain what the stuff was. I say ironic because it was one of the reasons I went the Sinemet/Rytary route. And now, I don't foresee getting on a plane anytime soon and nor would I ever take a job that requires travel. I will say that hospital policies are a deterrent though.
Are you seriously asking this forum to help you manage a double barrel neurological disorder?
We are not doctors.
There may be lots of advice, even with the limited profile you offer, but I fear you may be doing yourself an injustice 🌺
I am going to disagree. The poster is simply asking a question about using Mucuna for Parkinson's, and did receive a quality reply above.
Doctors are propagandized to believe that supplements can do no good and pharmaceuticals can do no harm. Many buy into this. Some know better. This forum is the right place to ask about Mucuna.
Indeed it may be the right place: there are countless post on it. My spouse takes a Manuca/Levodopa combo herself - ‘DopaBoost’.
What alarms me particularly is the naive assumption that going natural is the best way to go.
And with Kelrjd I am particularly rattled by her PD/MS diagnosis, for which she has already selected a product. She now seeks information on dose requirements for her product of choice 🧐
Ironically my post was simultaneous with pdpatient. Would have held my tongue had I seen the post.
And maybe next time I will just move along when I see such request 🌺
I hope you don't feel you should "move along," but we don't want to discourage people from asking questions because if they don't ask it here, they will ask it somewhere else and HU generates the highest quality information.
Yasssss
I believe you have learned a lot from this site.
I don't understand Casey. Every single participant on this forum ask for other people's advice and opinions.
I think that's the purpose of the forum.
See my response to park_bear 🌺
• in reply toMBAnderson
You don't understand why someone might feel that this forum mightnt be the best venue for what is effectively medical advice for someone with Parkinsons AND MS?
Seriously?
MBAnderson• in reply to
In your eagerness to nitpick with me, you have mistaken what I don't understand. I fully understand that he may not consider this forum the best professional medical advice.
When I said I don't understand, I was saying I don't understand why he would discourage someone from asking for advice and opinions.
You, along with every other person on this forum has asked for other people's opinion and advice. Call it medical advice if you want, call it whatever you want, people come here for advice and opinions that's not from their doctor.
• in reply toMBAnderson
And some people, especially when they've provided no info beyond 'hey I've PD and MS and wanna use Mucuna' should be turned around and sent straight back to their doctor.
You wouldn't know it by reading HUPM, but you can actually damage yourself going down 'the natural route', and someone with TWO major nervous system disorders is probably a great candidate for that.
MBAnderson• in reply to
If you don't mind, I disagree with sending people back to their doctor. They knew very well they could call their doctor before they came on here. They came on here because they wanted someone's opinion other than their doctors.
I am not 1 of those who believe you should only do what your doctor says because most traditional doctors don't know whole lot about alternative and complementary therapies
• in reply toMBAnderson
And all of that is fine, but few of us (if any) are going to understand the first thing about multiple sclerosis.
Yes, people are aware that they can call their doctor. That doesn't mean that they don't need to be encouraged to do it. People are aware of all sorts of things they should do, yet don't, unless they receive the appropriate encouragement.
Now, if this poster provided significantly more detail, like
"this is what I've done, this is what my Neuro said, they said ldopa wouldn't interfere with my MS meds (or MS), I asked about mucuna and they said that, whilst they couldn't or wouldn't advise me about it, they thought it would be fine",
THEN we'd be better placed to help.
MBAnderson• in reply to
There are several cohorts on this forum and 2 of them are those who believe you should only do what your doctor says and you should not do anything without your doctor's approval and the others are those who believe that there may be ways to slow the progression that their doctors are not familiar with.
if your doctor is dismissive of nutrition and supplements and alternative and complementary therapies and you only do what they say, you have no possibility of slowing the progression. You would be turning responsibility over to someone who cannot improve your health and no one cares as much about your health as you do.
I am of the cohort who believe there are people who are succeeding in slowing down their progression from things they learn from this forum.
I am satisfied that there is a very good chance that some of the things I do which I've learned on this forum are slowing down my progression and none of the things that I do which my doctors advise are slowing down my progression (and I see several very fine doctors at the VA all of whom I respect, are very competent and very knowledgeable.)
Do not misconstrue this. I believe everyone should consult with their doctors, but if their doctors deal exclusively in pharmaceuticals, their doctors are not going to improve their health or slow the progression, whereas information on this forum likely can.
marc
• in reply toMBAnderson
You are resorting to straw-man arguments again.
MBAnderson• in reply to
Take a moment and read what I said and if you disagree with the substance, explain why - rather than characterize my comments.
• in reply toMBAnderson
It's off topic, Marc. Your position on mixing doctor's advice and forum advice is well understood. Our issue here was that the OP also has MS, which as Chartist pointed out could present contraindication issues that we are not qualified to consider. You haven't addressed that at all.
Anyway OP had provided much more info now so I'll leave it at that.
MBAnderson• in reply to
I didn't address that because I don't offer opinions on pharmaceuticals, as I've pointed out to you before, for the very reason you site.
• in reply toMBAnderson
It's quite frustrating when you pivot from discussing the points that are actually being made (the MS is the issue, and I went to some trouble to make that clear) to those that you like making (here's how I feel about HU and alternative therapies). The very issue here is the presence of an accompanying chronic illness.
MBAnderson• in reply to
And what I said about MS is that I know a guy who believes he addresses it by eliminating gluten.
I was responding to the position that we should not offer opinions, but instead to your belief that he should be sent back to his doctor.
What concerns me about your responses to my comments is that you characterize my comments instead of responding to the substance. If you disagree with the substance and explain why you might benefit somebody's health. Characterizing my comments may feel good to you but is of no value to anybody else.
• in reply toMBAnderson
Your long post about the value of this forum had nothing to do with my point, which was that MS makes the situation a minefield that we should avoid until we know more. That's why I called it a straw-man argument because it wasn't refuting the point I had actually made, but was refuting points that I hadn't.
I absolutely agree! My husband also has MS. His previous neurologist wanted him to try a new medication that came out, one of the side effects was cancer. When we questioned the neurologist about this, he said, and I quote, "well we know how to treat cancer."needless to say, we didn't take the medicine and we switched neurologists. I am not anti medicine or anti doctors, but there's so much more out there that you can do to help yourself that doctors may not be aware of.
Both you and your husband have MS (conjugal) and now you have a PD diagnosis?! You need to take a hard look at your living environment and toxic exposures. There are several environmental medicine practitioners to help you detoxify and start rebuilding your health. I highly reccomend Terry Wahls book and you can watch her videos on YouTube. Dr. Wahls has MS and recovered with functional medicine.
There are many forms of Parkinsonism, PD is one of them. I do not subscribe to the medical dogma that these neurodegenerative illnesses are separate, there is considerable overlap and interrelationships between them, with 25% percent of people diagnosed with PD getting a changed diagnosis- 24% of people with ALS are diagnosed at autopsy. Blind faith in our conventional medical system to manage chronic illness is misplaced.
My original diagnosis was Parkinsonism with tremors due to the toxic effects of pesticides. I now have a diagnosis of MND/ALS. It is ALS plus syndrome aka Parkinsonism. Sadly we are now in the process of pursuing my husband's diagnosis of ALS. Conjugal anything is not a coincidence, you are both being poisoned. The first priority is to remove yourself from this environment.
I hope others on this forum recognize that first and foremost this is a support group, we are all struggling with neurological injury(s).
Imparting personal experience and wisdom is not tantamount to giving medical advice. This is absolutely the right place to ask questions for the community to answer and debate. You are the ultimate gatekeeper for yourself, you get to decide what you want to do. I have learned so much from others on this forum, you have an army of researchers (citizen scientists) at your disposal and you should take full advantage of this think tank.
Blessings,
SE
Silentechoes, so well said!
Agreed!
Precisely!
Yes!!!
No one said he/she is a doctor. You have been discouraging! We all express our personal therapy protocol and how works/doesn't work for us.
CaseyInsights is just concerned that someone may take the advises blindly and get themselves into trouble without doing adequate research. I know he is a huge proponent of alternative therapy and self-education, and I'm sure he was just worried the OP wasn't seeking professional help for his serious illnesses.
My comments were indeed discouraging. They were so intended 🐣
Do read my reply to park_bear who first objected to my approach 🤓
I cannot help you with your question about Mucuna, but I know somebody with MS who appears completely symptom-free and he believes that's because he has totally eliminated Gluten from his diet.
Hi, I can't speak for the specific Mucuna product but I use a few other products made by Micro Ingredients without issue.
If you haven't read the following helpful post on alternative therapies yet, I suggest you check it out.
healthunlocked.com/parkinso...
Also, as for the processed Mucuna, you should be fine at the lower 20% or even a bit higher. It may be advantageous in that they allow for more precise controlled administration of l-dopa as to one being overwhelmed with huge amounts of seed powder with inconsistent l-dopa per batch.
"Taken as a whole, efficacy data with MP powder from roasted seeds are in line with previous preclinical/clinical studies with MP extract (using pharmacologic processing), all consistently reporting a shorter latency to on and longer on duration with reduced dyskinesias as compared to LD+DDCI."
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
I also recommend you read the following article to gain additional insight.
intechopen.com/books/parkin...
Additional article to help with MS including the use of Mucuna and other nutrients -
Klerjd,
I do like a natural approach, but not to the exclusion of working with a neurologist at the same time.
That combination of these two diseases is quite serious and there may be contraindications between what you use for one disease to the other disease. Seems a little crazy to try and go it alone without a neurologist in the picture to help. I doubt more than one or two people on this forum would have any idea if mucuna might be harmful for MS. You don't normally treat MS with PD drugs.
Art
Thanks for all the info everyone. This is my weekend to work that's why this is my first chance to respond. I have had MS since I was 15 years old. When you have it as long as I have, 38 years, it plateaus. I won't get better, but I won't get worse. I've tried all the medicines for the ms, but sometimes the cure is worse than the disease. My Ms is stable and has been for years. I was diagnosed with PD in October of last year. Although, I believe I've had symptoms for at least seven years and just thought it was due to my MS. I have an MS neurologist that I see once or twice a year, and I have a wonderful movement specialist neurologist for the PD I've seen her three times since October. She is the one who recommended being on the folic acid ,coconut oil, thiamine, and fava beans. She knows I'm holistic and organic, and vegaterian, and she respects that . The fava beans really do help the muscle pain, but I didn't want to get that many calories everyday, that's why I wanted to switch to the Mucuna powder. I find this site usually very helpful, only have been a member for about a month now. That's why I figured I would ask if anyone has tried that brand and how much they use. That doesn't mean I would do exactly what they said, I research weeks and weeks before I attempt to do something.
Hi, you're certainly welcome here!
Please excuse us - it gets a bit heated here sometimes, because the members care. : )
I completely understand what you're saying about pharmaceutical treatments causing harm to worsen a diseased condition, especially when dealing with a faulty immune system control by further suppressing the immune system.
MS is an autoimmune disease often linked with leaky gut, genetic predisposition, nutritional deficiency, toxins, traumatic events, etc. - at the heart of it, the disease has many similar etiology to PD.
One of the first thing to address is the diet if you haven't already - You must remove/reduce refined carbs and sugar. Leaky gut is highly associated with overgrowth of Candida albicans and other pathogen that thrive with empty calories that create holes in the gut triggering confused immune response to toxins, bacteria, food particles, etc., eventually body's own tissue/nerves. What's worse is that these pathogenic bacteria produce thiaminase and cause B1 deficiency that can engender all types of serious diseases including dysautonomia, mitochondrial dysfunctions, and CFS. I highly recommend that you try the high dose B1 therapy along with other supporting nutrients (B's, Mg, Zn, etc) but you need to avoid high calorie malnutrition concurrently.
You may be interested in visiting the following site as well.
Have you heard of Dr Terry Wahls? She has extensive knowledge of MS since he has it herself, she went the pharmaceutical route but ended up in a wheelchair so she decided to try diet and supplements. She was eventually able to resume her normal active life style and wrote a book, the Wahl's Protocol. I have it but haven't made it all the way through yet, she also has recommendations for PD as well, there may be something there that could help you deal with both. I belong to an FB group run by her people, they post lots of info and videos by Dr Wahls. I take the processed Mucuna and find I can handle dosing and symptoms very well. Have not found any online specifics about the pharm version being sourced from the mucuna pruriens, but the ldopa I take is sourced from mucuna.
Will you share what you take snd where you get it? I have not heard of any non synthetic L-dopa.
My Dr has it formulated especially for his patients and I take that. Other folks get the powder from Nutravita, take with water or in capsules.
Wow interesting. Who’s the doc and where is he?
He's in eastern Oregon, a Chiropractic Neurologist, does not dispense pharms, only natural products. I had several symptoms of PD, which he caught, was going downhill fast. I'm now leveled off for the most part, stiffness in the neck and shoulders is my only real issue, many things have improved from before diagnosis, Mucuna is what turned it around.
A good set of videos on YouTube re Dr. Wahls.
Thanks for the background info: it is a critical frame.
You can start your research here
healthunlocked.com/parkinso...
And do use the query window to search for more threads on any topic of interest. Also check the sidebar on threads that you access for related post.
Welcome 🌺
Thank you. I did read that article the other day, it was very informative. it's the article that actually made me decide to try the powder
Very well then.
You have chosen to experiment. So go right ahead. Every one reacts differently to these powders.
And even if you got someone using your brand the dosage is going to be different.
But I will leave it up to one of the more experienced users to suggest dosage. ✨✌🏾✨
Hi Kelrjd. Are you not interested in a non-medication way of reversing your symptoms? No medication I know of has the ability to reverse Pd symptoms, they only deal temporarily with the symptoms.
If you are interested in going the mon-medication route, let me know!
I endorse the view you should not use advice from the forum as a substitute for medical advice from a doctor , and note that your doctor has recommended fava beans
I don't know the company
I don't use the product
Regarding how much to use, we're metric here in Europe, but I believe a cup of fava beans is about 16 grams and has between 100-200mg levadopa
So you are on between 50-100 mg in the morning and 25-50mg in the evening. I can't see specific claims for the levadopa content of the micro ingredients organic Mucuna 20:1 extract, but assuming the 20:1 is a reference to levadopa in the Mucuna, and not Mucuna in the product, it would appear to be 5% ldopa.
So, if we take the average values for your fava beans 75mg morning, 40mg (rounded) in the evening, you would be looking at about 1.5 grams of powder morning and 3/4 gram in the evening.
Those are very low levadopa levels, and if effective indicate that your PD is at an early stage. The "evil" conventional pharma route would start with maybe 12.5/50 CL TDS - which if you use the rule of thumb that the Dopa Decarboxylase inhibitor (DDCI) allows 5 times as much levadopa to reach the brain , is 250mg 3 times a day or 750mg a day
750mg compared with your (average) about 110mg - roughly 7 times as much. PD is progressive and at the point you need 750mg you would be looking at 3-6 cups of fava beans a day.
People on this forum like Royprop taking 50/200 sinemet QDS you are looking at 4000mg equivalent a day - in the region of 20-40 cups of fava beans. Probably a bit impractical. And aside from the sheer volume of food, that much levadopa would probably make you sick.
Start with 2 g of mucuna, 3 x a day, 1 hour before meals. Mucuna has much more levodopa than Fava beans.
Would it not help In this instance to ‘take -1 capsule of green tea extract in the AM. ‘ as you reported here in your thread ‘Optimizing Levodopa’
healthunlocked.com/parkinso...
Absolutely, 1capsule of green tea extract in the AM helps a great deal. The tricky part is not to take it on an empty stomach. A solution would be to ingest some fruit with your meds in the morning, or take one omeprasol 20mg half an hour before your meds in the AM. Do not take mucuna with any protein (milk, yogurt, etc). You should take your protein 1 hour after your meds, with your full breakfast.
Thanks for the update 🌺
No friend of PPI’s (Omeprazole belongs to a class of drugs known as proton pump inhibitors (PPIs).
The fruit and some crackers should be just fine 🌺
These responses are exactly why I love this forum. The debate is necessary to really develop pearls. The fire gets more people to respond and more people eek out what they have learned over the course of their disease. I have gleaned many things from these people. For example, everyone charts their own course with this unique-to-you disease. I dynamic dose to correspond to my lifestyle. My neurologist is a prescription only type but I can work with him because he listens to me. I occasionally fast, have eliminated sugar from my diet and only eat protein at dinner. And I walk, golf or exercise every day.
Works for me right now and I am prepared to change if needed. Or if read something that compels me to try something new?
i tried mucuna amino route for several years ended up on sinemet to avoid spending my life measuring out powders aminos etc. good luck! cheers!
Fantastic that you want to try the natural way. Look up John Pepper and reverse Parkinsons, good luck to you
I would suggest before you do anything that you read a book called "The Wahls Protocol" by Dr Terry Wahls. She had MS and was in a wheel chair, she cured herself by changing her diet and using supplements. She is American and has some good insights on how to relieve PD symptoms as well.
Thank you to everyone who replied. I really appreciate all the advice. I do plan on responding to everyone, it was just a bad week pain wise and work wise.
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